Each month, about one million people cross through checkpoints like Stanytsia Luhanska in east Ukraine. More than half are older people traveling into areas under Ukrainian control to collect social benefit payments. Between January and early April, according to the Organization for Security and Co-operation in Europe (OSCE), at least 19 people died while crossing these checkpoints, mostly older people with heart-related complications. Ukrainian officials have voiced deep suspicion and even hostility toward this population, suggesting they are “anti-Ukrainian.” The government also forces them to register as internally displaced persons and to provide addresses in government-controlled areas – a legal fiction which often involves paying monthly fees to landlords there – and to make the difficult journey through Ukrainian crossing points at least once every 60 days. If they fail to register or cross, the authorities automatically stop paying their pension. Spend an hour in Stanytsia Luhanska and it becomes clear just how arduous these requirements are for older people. Dozens pass by in wheelchairs, while others can walk only with crutches, walkers, or canes. Some people pay up to 200 hryvnia (about US$7.60) to be ferried one half of the journey in hand-pushed carts – no small price for someone on a pension of 2000 hryvnia (US$76).

Posted: January 1, 1970, 12:00 am

More than 13,500 asylum seekers remain trapped on the Greek islands in deplorable conditions as winter begins on December 21, 2017. Greece, with support from its European Union partners, should urgently transfer thousands of asylum seekers to the Greek mainland and provide them with adequate accommodation and access to fair and efficient asylum procedures.

Author: Human Rights Watch, Human Rights Watch
Posted: January 1, 1970, 12:00 am

Shantha Rau Barriga is the founding director of the disability rights division at Human Rights Watch. She leads research and advocacy on human rights abuses against persons with disabilities worldwide including: the shackling of people with psychosocial disabilities, denial of education for children with disabilities, violence against women and girls with disabilities, institutionalization of children and adults with disabilities, and the neglect of people with disabilities in humanitarian emergencies. She has worked on projects on Australia, Brazil, Central African Republic, China, Croatia, Ghana, India, Indonesia, Iran, Morocco, Nepal, Peru, Russia, Serbia, South Sudan, Tanzania, Uganda, the United States, and Zambia.  

Shantha is a founding member of the International Network of Women with Disabilities, member of the Amnesty International Advisory Group on Disability Rights, expert advisor to the Catalyst for Inclusive Education Initiative and a senior advisor to the Global Campaign for Mental Health. She also served on the UNICEF Advisory Board for the 2013 State of the World’s Children report.

Before joining Human Rights Watch, Shantha participated in the UN negotiations toward the Convention on the Rights of Persons with Disabilities, working as part of a global coalition to advocate for strong protections on non-discrimination, accessibility, education, legal capacity, independent living and international monitoring. She also previously worked with UNICEF Tanzania, carrying out an assessment on children with disabilities in refugee camps in Kibondo.

Shantha received degrees from the Fletcher School of Law and Diplomacy at Tufts University and the University of Michigan, and was a Fulbright Scholar to Austria. She speaks German and Kannada. Shantha is married and has two sons.

Posted: January 1, 1970, 12:00 am

Summary

At that stage he couldn’t walk, only shuffle, he was very, very depressed, just crying all the time. And he couldn’t swallow… He would say, “My mind is a hell to me.” He wouldn’t be engaged in a conversation… All his symptoms are side effects of the antipsychotics, and they disappeared after he went off [them].

– Susan Ryan describing her father in 2013, June 2019

Susan Ryan was describing Ray, her 78-year-old father, when he was being chemically restrained in an aged care facility in 2013. Ray is one of approximately 450,000 people estimated to be living with some form of dementia in Australia. Dementia is a progressive, degenerative brain disease – associated with loss of memory and other cognitive abilities – that tends to occur in older age. Over half of the people living in aged care facilities have dementia. In Australia, staff at aged care facilities are giving older people with dementia drugs to control their behavior even though the drugs are not required to treat medical symptoms – a practice known as chemical restraint.

Restraining older people with drugs can have grave consequences. One woman described her grandmother, who in 2018 was living in an aged care facility in southern Queensland:

“Everything about her, her health, her spirit, declined after that drug. We went to see her after the meds, and she couldn’t hold a conversation, she was dropping off to sleep, [just] like that. She wouldn’t get up to go to the toilet until the last second because she was so tired.”

These and other relatives of older people living with dementia in aged care facilities described a dramatic deterioration in the conditions of their family members, including formerly energetic, talkative people who became lethargic and, in some cases, unable to speak. Many said that their relatives slept heavily, often for long periods, and could not be awakened without difficulty. They experienced serious weight loss, often because they were not able to stay awake long enough to eat.

Video

Video: Fit and Healthy After Getting Off Chemical Restraints

Ray Ekins, 78, has dementia and was prescribed olanzapine, an antipsychotic prohibited for use in older people with dementia. His daughter Susan asked his geriatrician about significant changes in his mood and behavior. He told her that her father was old, and she and Ray would just have to accept it. Susan moved Ray to a new facility in 2014 which helped to wean him off the drugs. 

Video

Video: Nursing Homes in Australia Routinely Sedate Older People

Monica has dementia and lives with her husband in a facility near Melbourne. Her son realized she was being given a cocktail of drugs when he asked to see her charts. After extensive negotiation, Monica’s doctor and facility staff agreed to wean her off the drugs. Monica went from being hunched and unbalanced to being able to sit, eat, greet people, and dance when her grandson visits and sings.

 Medications should only be given when they have a therapeutic value. Medication for the purposes of controlling behavior without a therapeutic purpose is chemical restraint. The long-term, continual use of this practice on older people with dementia in aged care facilities in Australia appears to be driven by a number of factors, including understaffing of aged care facilities and inadequate training in dementia support, leading to an inability to appropriately support the needs of people with dementia. For understaffed facilities, chemical restraint can make managing people with dementia easier, especially when staff lack adequate training in supporting people with dementia. “They don’t have enough staff or supervision so they knock them out,” the daughter of a woman with dementia told Human Rights Watch. In many facilities, inadequate staff and training make it almost impossible to take an individualized, comprehensive approach to supporting people with dementia. Many aged care facilities have staffing levels well below what experts consider the minimum needed to provide appropriate care.

This report is based on interviews with family members, doctors, nurses, and advocates, and documents the use of medications as chemical restraint in 35 aged care facilities in three states in Australia: Queensland, Victoria, and New South Wales. In all three states, Human Rights Watch research indicated that older people were restrained with sedatives and antipsychotic medications. The report is based on interviews with 89 individuals, including 37 family members of older persons who are living in aged care facilities or deceased (plus one older person living in an aged care facility), aged care facility staff, doctors, nurses, aged care experts and disability rights experts, advocacy organizations, and government officials between April 2018 and August 2019.

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© 2019 Human Rights Watch

Human Rights Watch documented the use of various drugs used in chemical restraint, including antipsychotic drugs, benzodiazepines, and sedative-hypnotic drugs, sometimes known as “tranquilizers,” “sleeping pills,” or “sedatives”; and opioid analgesics, also known as narcotic painkillers.

Clinical studies in the United States have found that antipsychotic drugs increase the risk of death in older people with dementia. Benzodiazepine use in older people is associated with increased risks of falls, pneumonia, and death. The government of Australia has not approved the use of many of these drugs in older people, citing these studies.

As best as Human Rights Watch can determine, staff in the aged care facilities where we conducted research did not seek or secure informed consent prior to giving these medications. Informed consent requires a decision based on a discussion of the purpose, risks, benefits, and alternatives to a medical intervention, as well as the absence of pressure or coercion in making the decision. Individuals receiving medication should only receive it after they have given their free and informed consent in accordance with international human rights standards.

In addition, family members who have powers of attorney (legal authority to act on another’s behalf) to make decisions on behalf of their relatives in aged care facilities told Human Rights Watch that facility staff did not seek their informed consent for the medications used as chemical restraints. Many relatives said they only learned that their relatives had been given medications after they received pharmacy bills listing the medications. For example, one woman described her shock and confusion after receiving a pharmacy bill listing an antipsychotic medication, among others, that staff were giving to her husband in an aged care facility in northern Queensland. She told Human Rights Watch that the facility had not discussed this with her, much less sought her informed consent, even though she holds power of attorney for her husband.

When families confronted facilities with requests for the removal of chemical restraints, they said they were met with intimidation and retaliation.

Chemical restraint is not a necessary or last-resort option. Clinical studies have shown that non-medical interventions focused on an individual’s unique qualities as a person and building and nurturing relationships are effective tools for addressing symptoms of dementia, including agitation and aggression. These symptoms can be distressing for the people who experience them, their families, and aged care facility staff.

Positive interventions include exercise, music, and redirection to a different activity. Human Rights Watch documented several cases in which family members described how relatives with dementia who were taken off medications used to restrain them regained much of their vitality, once again talking and interacting, and staying awake during the day. However, some relatives continued to experience the negative physical and cognitive impacts consistent with the effects of chemical restraints, such as the loss of muscle strength and the inability to swallow.

Australia’s existing legal and regulatory framework is inadequate to protect older people in aged care facilities from chemical restraint; it explicitly allows it. Until the introduction of a new regulation by the Commonwealth Minister for Senior Australians and Aged Care that came into effect on July 1, 2019, there was no regulation of chemical restraint in aged care at all. The regulation purports to minimize the use of physical and chemical restraint, but it does not because it does not prohibit chemical restraint, guarantee the right to informed consent, or provide for a complaint mechanism when a person has been chemically restrained.

Under international human rights law, governments are obligated to respect the inherent dignity of persons with disabilities, including older people, by acknowledging them as persons on an equal basis with others. This includes recognizing that they have the right to live independently in the community without being forced to live in an institution, and to have all their human rights protected if they choose to be in institutions such as aged care facilities. Governments should also prevent discrimination and abuse against people with disabilities and remove barriers that prevent their full inclusion in society.

Australia’s Aged Care Quality and Safety Commission, the agency that regulates aged care and handles complaints about aged care, closed 5,738 complaints in the fiscal year ending June 30, 2018. Seventy-five percent of the complaints were about residential aged care; the remainder came from other areas it oversees, such as home care. Those whom Human Rights Watch interviewed who had attempted to use the system in 2016, 2017, and 2018 did not find it to be an effective mechanism to challenge facilities’ use of chemical restraints on their family members.

The provision of any medication without informed consent violates the right to informed consent to medical treatment and interventions and the right to the highest attainable standard of health. It violates human dignity, bodily integrity, and equality. The use of drugs as a chemical restraint could constitute cruel, inhuman, and degrading treatment under international law.

Appropriate support for people living with dementia will require legislative and regulatory change and enforcement by prohibiting chemical restraint as well as increasing numbers of trained staff, particularly as the older population of Australia continues to increase. Inaction is not an option. The consequences of inadequate legal and regulatory frameworks to prevent chemical restraint are needless suffering, increased disability, and even death.

The Australian government should end the use of chemical restraints as a means of controlling the behavior of older people in aged care. The government should develop support and interventions, including person-centered care, for persons experiencing agitation, emotional distress, or challenging behaviors in aged care facilities. Any new law should also ensure informed consent for all treatment and ensure independent monitoring and effective, accessible, independent complaint mechanisms, including for individuals in aged care facilities and their families. 

Key Recommendation

Parliament should enact legislation to prohibit the use of chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of facility staff. The legislation should include:

  • Mandatory training for all aged care facility staff in dementia and alternative methods and skills to de-escalate unwanted behavior and support the needs of people with dementia;
  • Adequate minimum staffing levels to provide support to older people; and
  • Adequate enforcement mechanisms to protect older people’s rights.

Methodology

This report is based on Human Rights Watch interviews with 89 people conducted between April 2018 and August 2019 in the Australian Capital Territory; in and around the cities of Brisbane and Cairns in Queensland; in and around Melbourne, Victoria; and in and around Sydney in New South Wales. The three states were selected based on their high populations of older people and number of aged care facilities. Human Rights Watch conducted additional phone interviews from January 2019 through August 2019.

This report focuses on the human cost of Australian aged care facilities’ use of non-medically required drugs to control the behavior of older people with dementia. Many older people in aged care facilities are at risk of this abuse.

Our research documented the accounts of family members who observed older people with dementia under chemical restraint in aged care facilities. We interviewed them about what changes they saw, what they learned about their family member’s drug intake, and whether they raised any concerns with facility staff or the government complaints agency. Some of the people interviewed requested anonymity. All instances where pseudonyms have been used are referenced in the footnotes. In some cases we have withheld additional identifying information to protect a person’s identity.

We found interviewees through Australian state aged care advocacy organizations, dementia advocacy organizations and advocates, and referrals from people we interviewed. In most cases, relatives of people in aged care had contacted organizations for advice, legal representation, or other support. Those organizations then facilitated introductions.

For this reason, the families of older people interviewed for this report cannot be said to reflect the most isolated and at-risk people in aged care facilities: people who are on their own, without family or friends visiting or communicating with the facility staff, and who have disabilities that impair their ability to communicate or advocate on their own behalf.

We interviewed 37 relatives of older people aged 59 to 103 years. We interviewed one older person who has dementia and experienced chemical restraint. We did not conduct interviews with other older people who had experienced chemical restraint. Some people had passed away by the time of our interview with a family member, some had been taken off chemical restraints, and some were still being restrained.

We interviewed people in the locations they indicated as most comfortable to them: in their homes, at advocacy organization offices, and in cafes or other public locations. We conducted three interviews in aged care facilities with relatives of a person with dementia, with the person who has dementia present. We conducted one interview with a person with dementia in an aged care facility. We conducted interviews in private so that individuals could speak without fear of potential retaliation from aged care facility staff or relatives.

Human Rights Watch obtained the informed consent of each interviewee; explained the aim of the research; how information collected would be used; and informed them that they could discontinue the interview at any time and could decline to answer questions without consequence. Human Rights Watch provided no personal service or benefit and told interviewees that their participation was voluntary, and their identities would be kept confidential where requested.

We interviewed 36 experts, including three doctors, two facility managers, one director of nursing, four professional advocates, two nurses, one physiotherapist, and one pharmacist. We also interviewed lawyers, academic researchers, professors, and representatives from advocacy and interest groups.

In order to obtain the perspectives of aged care facilities, Human Rights Watch sent letters requesting to meet with facility managers at 21 facilities chosen at random in Queensland, New South Wales, and Victoria. We received two responses: one declined, the other accepted. We interviewed one other facility administrator, as well as other staff members speaking in their personal capacity, not for their institution. We did not seek interviews with facilities where family members told us their relatives were facing chemical restraint to avoid any risk of reprisals.

Human Rights Watch shared some of the key findings of this report with Leading Age Services Australia, a trade association for aged care providers; Aged and Community Services Australia, a trade association for non-profit aged care providers; and the Aged Care Guild, requesting their perspectives. Leading Age Services Australia and Aged and Community Services Australia responded, and we met with Aged and Community Services Australia.

We also met with 15 government officials including from the Department of Health, Office of the Public Advocate for Victoria, the Australian Human Rights Commission, the Queensland Public Guardian, and the Department of the Prime Minister and Cabinet. We met with advisors to the Minister for Aged Care and the Attorney General.  We wrote a letter requesting a response from the Department of Health. The department’s response is reflected in relevant sections of this report and is also included in Annex I. We requested a meeting and wrote a letter requesting a response from the Aged Care Quality and Safety Commission, the primary agency responsible for monitoring aged care in Australia, in respect of this report’s findings, but had not heard back at time of writing.

Responses received are reflected in the report.  Our letters and correspondence are included in the annex.

I. Background

Overview of Aged Care in Australia

Australians aged 65 and over make up about 15 percent of the total population of Australia. By 2057, it is projected they will make up 22 percent of the population.[1]

Australia’s Aged Care Act 1997 defines residential aged care as: personal care or nursing care, or both personal care and nursing care, that is provided to a person in a residential facility in which the person resides, including appropriate staffing to meet the nursing and personal care needs of the person; meals and cleaning services; and furnishings, furniture and equipment for the provision of that care and accommodation.[2]

Care is generally provided by personal carers, enrolled nurses, and registered nurses.[3] There is no federal legislative requirement for aged care facilities to have on-site nurses 24 hours per day.[4] The number and type of staffing is not regulated in aged care facilities in Australia.[5] Such ratios of support are regulated for other settings, such as childcare settings and hospitals.[6] There is no national minimum standardized training requirement for aged care personal carers, including on dementia care.[7]

As of June 30, 2018, there were 2,695 residential aged care facilities in Australia, with capacity for 207,100 people.[8] More than half of the people living in aged care facilities in Australia have dementia.[9] New South Wales has 882 aged care facilities, Victoria has 760, and Queensland, 456.[10] About 45 percent of these facilities are for-profit, 40 percent are religious and charitable organizations, 13 percent are community-based organizations, and about three percent are run by state, territorial, and local governments.[11]

Aged care in facilities is paid for by both the Australian government and by contributions from the residents. The government pays “subsidies and supplements” to approved providers for each resident receiving care under the Aged Care Act, based on an assessment of residents’ support needs.[12] Most residents will pay at least a basic fee every two weeks of AU$576 (US$393), plus, in some cases, additional contributions based on income and assets.[13] For the fiscal year 2017-18, government contributions averaged AU$65,600 (US$44,784) per permanent facility resident (as opposed to short-term residents).[14]

The total government expenditure on aged care in fiscal year 2017-2018 was AU$18.6 billion (US$12.7 billion), according to the Aged Care Financing Authority, an independent agency providing independent advice to the Australian government on the sustainability of the aged care sector.[15] Of this, 66 percent went to residential care; 12 percent to home care; 17 percent to home support; and 2.7 percent to flexible aged care, such as therapy after hospital stays, rural health, and aged care support and short-term programs.[16]

Older People “Prefer to Live at Home”

In 2015, the Australian government’s Productivity Commission, which provides research and advice on issues affecting the welfare of Australians, published a research paper analyzing housing decisions of older people.[17] The data revealed that older people prefer to “age in place,” meaning remain at home in their local community.[18] Most older Australians live in private residences (their own homes), and about 80 percent own their homes.[19] The research also revealed that “the majority of older people are satisfied with their dwellings.”[20]

The Commission recommends that the government provide greater support for people to remain in their homes and receive necessary support and care there because older people have expressed this preference. The Commission also notes that this policy may align with the government’s fiscal sustainability objectives to rein in spending, according to the report: “Although the care needs are typically higher for residential aged care, ultimately delivering home care requires much less public funding.”[21] The government has announced increased funding for services to enable older people to continue to live independently in their own homes.[22]

Dementia

Globally, in 2017, nearly 50 million people were estimated to be living with dementia.[23] Alzheimer’s disease is the most common cause of dementia contributing to an estimated 60 to 70 percent of all dementia.[24] In Australia, 447,115 people are estimated to be living with some form of dementia.[25]

Dementia is “the loss of cognitive functioning—thinking, remembering, and reasoning—

and behavioral abilities to such an extent that it interferes with a person's daily life and activities.”[26] It may change functioning of memory, language, attention, emotion and self-management, among other things. [27]

Dementia-related symptoms may result from changes in the body’s nervous system associated with dementia or from an external or underlying situation such as pain or personal needs.[28] Dementia is often accompanied by irritability, agitation, aggression, hallucinations, delusions, wandering, disinhibition, anxiety, and depression.[29] These symptoms may be a response to unmet physical needs like being hungry, thirsty, or cold, or to “environmental triggers,” such as being ignored. Alternatively, symptoms may be “consequences of a mismatch between the environment and patients’ abilities to process and act upon cues, expectations and demands.”[30] They can be distressing for the people who experience them, their families, and aged care facility staff.

Person-Centered Care

Research has found that person-centered care, focused on an individual’s unique qualities as a person and building and nurturing relationships between the individual and others, is an effective non-pharmacological intervention for improving symptoms of dementia, including agitation and aggression.[31] Non-pharmacological interventions can include physical exercise, music therapy, massage, redirection, and others. Several studies have confirmed the positive results of music therapy.[32] Other non-pharmacological interventions includes reducing boredom, pain, loneliness, and similar experiences by changing a person’s activities, surroundings, opportunities, and access to relationships; creating individualized sleep, hygiene, bathroom, and other daily routines that the person prefers; or ensuring staff are consistent and familiar with the individual.[33]

Studies from the United States have found that people with dementia treated with person-centered care interventions demonstrated signs of improved quality of life, decreased agitation and other “challenging behaviors,” improved sleep patterns, and maintenance of self-esteem.[34]

The World Health Organization (WHO) has found that aggressiveness and unwanted behavior can often arise when individuals are constrained by the inherently rigid nature of a facility that does not give adequate attention to an individual’s will and requirements.[35] The WHO is designing programs to train facility staff to prevent situations that can escalate into aggressiveness, violence, and behavior that could result in self-harm. One key element is creating an institutional environment that recognizes individual needs and requirements and provides services in a timely and dignified manner. Other alternatives are designing individualized plans to understand and recognize triggers, early warnings, and tense situations.[36] The Australian government does not currently require these practices.

Chemical Restraint

Chemical restraint is defined in Australia’s 2019 regulation on minimizing restraints as “a restraint that is, or that involves, the use of medication or a chemical substance for the purpose of influencing a person’s behaviour, other than medication prescribed for the treatment of, or to enable treatment of, a diagnosed mental disorder [mental health condition], a physical illness or a physical condition.”[37] The WHO defines it similarly: “medication which is not part of the person’s treatment regimen and is used to restrict the freedom of a person’s movement and/or control their behaviour.”[38] Some countries such as the United States have prohibited chemical restraint in aged care facilities.[39]

Recognition of the Problem of Chemical Restraint in Aged Care

Over the years, policy and legal experts in Australia have criticized the use of chemical restraint in aged care facilities. High-profile cases have helped spark public awareness about the dangers of over-medicating people with dementia. Bob Spriggs, 66, died in February 2016 from an overdose of an atypical antipsychotic drug at an aged care facility in Oakden, South Australia. He had dementia and Parkinson’s disease. [40] In 2017, a government regulatory review found that, “While the situation at Oakden is far from typical, the circumstances that led to it are certainly not unique.”[41] In September 2018, a widely watched television news program, 4 Corners, investigated a range of serious abuses in aged care facilities across Australia, including chemical restraint.[42]

Medical and legal experts have also raised the issue of chemical restraint and the lack of effective regulation. The Australian Society for Geriatric Medicine noted in 2005: 

The problem of … drug use is a very serious and significant one in residential care facilities… The answer to behavioural problems in patients with dementia, for example, is not to give them antipsychotic medications but to put in place [sic] appropriate behavioural and environmental strategies.[43]

In February 2019, the acting state coroner in Victoria published his findings in relation to the death of Margaret Barton in an aged care facility at the age of 83. The coroner found “there is sufficient correlation between Mrs. Barton’s multiple falls and the Oxazepam, to conclude that the medication regime contributed to her physical decline and death.”[44]

And the Australian Law Reform Commission noted in its 2017 report on elder abuse that “the use of restrictive practices…can deprive people of their liberty and dignity—basic legal and human rights.”[45] The Australian government’s Review of National Aged Care Quality Regulatory Processes in 2017, noted that in aged care facilities, “There are pressures on all sides that promote antipsychotics as a ‘quick fix,’ and once commenced, a ‘set and forget’ mentality can result.”[46] It also found that, “The standards [for aged care facility accreditation] do not [regulate] adequately in the area of restrictive practices.”[47] In 2017, the Queensland Office of the Public Advocate concluded that: “[T]he Aged Care Act does not currently act as an effective mechanism for reducing or regulating restrictive practices in the aged care sector.”[48] 

Medicines as Chemical Restraints

Different drugs can be used as chemical restraints. These include antipsychotics, sometimes known as neuroleptics, used to treat symptoms of delusions and hallucinations; or, benzodiazepines and sedative-hypnotic drugs, sometimes known as “tranquilizers,” “sleeping pills,” or “sedatives”; and others, like opioid analgesics, known as narcotic painkillers. Benzodiazepine use in older people is associated with increased risks of falls, pneumonia, and death.[49] Australia’s government subsidizes the cost of these medications.[50] 

Scientific studies have also documented the use of these drugs in aged care facilities in the country. A May 2018 study of 12,157 residents in 150 aged care facilities in Australia found that 22 percent were taking antipsychotics every day.[51] A 2010 study of aged care residents in 40 aged care homes throughout Tasmania found that 21 percent of residents were taking antipsychotics, and 43 percent were taking anti-anxiety or hypnotic medicines (commonly referred to as “sleeping pills”).[52] Other studies have estimated even higher rates of use in some parts of Australia, including a finding of 57,130 prescriptions of antipsychotics prescribed for every 100,000 people over 65 years of age in Yarra, Victoria in 2013-14.[53]

Antipsychotic Medications

Antipsychotics increase the risk of death in older people with dementia, according to at least 17 placebo-controlled clinical studies of the drugs, mostly conducted in the US.[54] The causes of death varied, but most were related to heart failure or infections like pneumonia.[55]

Aside from raising the risk of death, the side effects of antipsychotics can include severe nervous system problems, neuroleptic malignant syndrome (a life-threatening reaction associated with severe muscular rigidity, fever, and altered mental status); tardive dyskinesia (characterized by stiff, jerking movements that may be permanent once they start and whose likelihood of onset increases the longer antipsychotic drugs are taken); high blood sugar and diabetes; and low blood pressure, which causes dizziness and fainting.[56] Other side effects can include increased mortality, cerebrovascular events (stroke), cardiovascular effects, blood clots, central and autonomic nervous system problems, visual disturbances, metabolic effects, fall risk and hip fracture, irreversible cognitive decompensation, and pneumonia.[57]

One of the most widely used drugs for controlling the behavior of people with dementia in Australia is the antipsychotic drug risperidone.[58] According to the Department of Health’s Therapeutic Goods Administration’s website, risperidone is allowed in older people with moderate to severe Alzheimer’s dementia for psychotic symptoms, or persistent agitation or aggression unresponsive to non-pharmacological approaches for up to 12 weeks.[59]

In an October 2019 letter to Human Rights Watch, the Department of Health also specified that “Australian guidelines acknowledge that non-pharmacological therapies are the first line treatment for behavioural and psychological disturbances in patients with dementia. However, if pharmacological therapy is required to control hallucinations, delusions or seriously disturbed behaviour, risperidone is considered first line therapy” (emphasis added).[60]

The product information for risperidone, posted on the Australian government’s Therapeutic Goods Administration’s website, notes that its use in older people with dementia increases their risk of death and stroke.[61] Other drugs of the same class of atypical antipsychotic drugs have this same language, but include an additional statement such as: “[This atypical antipsychotic] is not approved for the treatment of patients with dementia-related psychosis.”[62] Risperidone does not carry this statement in Australia. It does carry a black box warning in the United States, meaning that manufacturers must

include on conventional and atypical antipsychotic drug labels, including risperidone, that older patients with “dementia-related psychosis” treated with antipsychotic drugs are at an increased risk of death.[63]

Product Information on the Australian Government’s Department of

Therapeutic Goods Administration Website

 

Drug Name

Class

Product Information, including information on studies finding increased risk of death for use in older people with dementia

Approved for Use in Older People with Dementia

Olanzapine

Atypical antipsychotic

Yes[64]

No[65]

Risperidone and similar drugs

Atypical antipsychotic

Yes[66]

Yes, for short-term (<12 week) use for people with Alzheimer’s[67]

Quetiapine

and similar drugs

Atypical antipsychotic

Yes[68]

No[69]

 

II. Use of Chemical Restraint in Aged Care Facilities

Through interviews with family members of people living or having lived in aged care facilities in Australia, Human Rights Watch documented the use of antipsychotic drugs and sedatives as chemical restraint on older people with dementia. The medicines were administered over long periods apparently to control and subdue people rather than ensure their well-being. Medicines were prescribed often at the request of nurses to doctors who were not physically present to evaluate the patients. Medicines were also often prescribed and administered without the informed consent of the individual or family members holding medical powers of attorney to make medical decisions on behalf of their loved ones. The practice of chemical restraint appears linked to both understaffing and a lack of staff trained in non-pharmacological, supportive interventions for people with dementia, as well as the absence of clear legal restrictions on this practice in Australian law.

The medicines being given to older people with dementia have been recognized by the Australian government’s Therapeutic Goods Authority as having serious risks of increased disability and death for older patients with dementia (see chart in Section I ). The potential for harm and lack of medical benefit for older people living in aged care facilities combined with the apparent intent of giving these medicines to control behaviors – without attempts to implement non-pharmacological interventions, indicates that this practice is chemical restraint.

We documented how aged care facility staff administered antipsychotic drugs, sedatives, opioids, and other drugs to residents. People were most commonly given the antipsychotic risperidone, often in combination with other drugs including, oxazepam, a sedative, and quetiapine, another antipsychotic.

Australian prescribing guidelines allow the use of risperidone in older people with Alzheimer’s after other interventions have been exhausted and only for 12 weeks.[70] We documented how aged care facility staff gave residents risperidone for periods beyond 12 weeks, in some cases for years. We also documented how staff gave older people antipsychotic medications that are approved for schizophrenia but are not approved for use in older people with dementia, such as olanzapine, also for weeks or months. None of the people who received these antipsychotic medications had a diagnosis of schizophrenia.

In all cases documented by Human Rights Watch in which relatives discussed the effects of the drugs with facility staff, interviewees told us how doctors or facility staff specified that the medication was given to control residents’ behavior.  Staff reported to families that they did this in response to behavior such as wandering or trying to leave. Some people we interviewed said that staff chemically restrained their relatives for reportedly doing things such as moving around in their bed at night or having verbal outbursts.

This report documents the use of chemical restraints in situations where personal support was not provided to individuals to help manage their behavior over time. Staff gave older people with dementia these medications over periods of weeks, months, and years. Those interviewed did not include individuals with complaints about single uses of these drugs during crises or emergencies.

Interviewees described how formerly energetic, talkative people became lethargic and, in some cases, unable to speak, during the period that the drugs were administered. Many reported that their relatives slept heavily, often for long periods, and could not be awakened without difficulty. They experienced serious weight loss and dehydration, often because they were not able to stay awake long enough to eat or drink. Many became so weak from not using their muscles that they lost mobility. They often lost the ability to perform self-care tasks such as using the bathroom or showering.

According to family members, in no cases that we documented had staff secured the informed consent of individuals’ chosen person holding powers of attorney. In some cases, families learned that their relatives had been given antipsychotic or other medications only when they received the pharmacy bill. The CRPD Committee, the body of independent experts that monitors states’ compliance with the UN Convention on the Rights of Persons with Disabilities, has held that any treatment of an adult with medications without consent is a violation of the right to equal recognition before the law and an infringement of the right to personal integrity; freedom from torture and inhuman and degrading treatment; and freedom from violent exploitation and abuse.[71]

Some family members also told Human Rights Watch that they were able to have their older relatives go off the medicines that were restraining them by removing them from the facility, by caring for them at home with out-of-pocket support, or by hiring private staff in a facility, and that, with support, they were again able to enjoy things like being with loved ones, going for an outing, and listening to music.

Excessive Lethargy and Sleep

Lethargy and excessive sleep are some of the most significant effects of chemical restraints and which impact all other aspects of an individual’s life. “Glynnis,” 84, moved into an aged care facility on the Gold Coast in Queensland in 2017. She had dementia. About a year into her stay, Glynnis left the facility one morning and walked nine kilometers to her daughter’s house. After that, the facility told her family that it would give her medication to control her wandering but did not specify which drug or explain potential risks. Her granddaughter Katie told us that her family found out that the facility staff were giving Glynnis the antipsychotics after she took a photo of a chart left by a nurse in her grandmother’s room. Katie explained her grandmother’s condition after the medications started:

Everything about her, her health, her spirit, declined after that drug. We went to see her after the meds, and she couldn’t hold a conversation, she was dropping off to sleep, [just] like that. She wouldn’t get up to go to the toilet until the last second because she was so tired. She was having trouble getting out of the chairs, when she had no trouble before … She wasn’t moving at all. She had to be showered [by staff] … She was falling asleep sitting up. Having trouble getting up. Her eyes would roll back in her head.[72]

Together with an advocate from ADA Australia, an older person’s rights organization, Glynnis’s family met with the facility management and asked that they stop the medication. The facility refused. Katie said, “The more I pushed for no medications [as restraints], the more they resisted.”[73]

“Linda,” 59, has dementia and lives in an aged care facility in Melbourne, Victoria. Her daughter, “Jessica,” who has her mother’s power of attorney together with her siblings, told Human Rights Watch that in late 2018, Linda started walking restlessly around the facility and, in response, the staff gave her antipsychotic drugs that she had been prescribed PRN, pro re nata, meaning on an “as-needed” basis, determined by the staff, in addition to regular doses of medications. Jessica said staff had not informed her about the additional medications. She started to ask questions when she noticed her mother was going to sleep by 10 p.m., not waking until 11 a.m., and then falling asleep again at noon:

Two weeks ago, I found out she was getting oxazepam [a sedative] PRN almost every night. A nurse told me she was starting to get concerned [my mother] is [already] getting [a] 9 p.m. [dose of another sedative] every night.

So, I stayed and watched until 11 p.m. She was waking at 10:30 p.m. and moving around the bed, setting off the sensor.

I talked with the nurse, and his exact words were, “But I have to give her medication to keep her in bed.” I asked, “Could you give her a walk for 10 minutes?” He says, “At night, there are only two staff members on, I can’t give her a walk.”[74]

In 2018, staff at an aged care facility in Queensland reported to “Lisa” that her father, “Gene,” 85, had hit a nurse and would need to be placed “on tablets” to control him.[75] A general practitioner (GP) in the facility put him on three daily doses of antipsychotic drugs. Lisa found her father sleeping at all hours of the day. Staff reported to her that he fell asleep in the shower. She found a new GP who took him off the drugs, but Gene experienced lasting physical damage, as described below.[76]

Raylene Liddicoat, director of Simply Chronic Care, a nursing consultancy working in aged care facilities, told Human Rights Watch about an older woman in the facility where she worked who was “on medication to keep her in bed… She’d started to fall out of bed because she didn’t want to be alone in her room. So they wanted to sedate her. I said to the staff that we’ll get her up for her meals… This lady wants to be interactive with the community, not in bed.”[77]

Significant Weight Loss and Dehydration

Human Rights Watch documented several cases in which older people with dementia lost significant weight in aged care facilities while receiving medication used to restrain them.

For example, Michal Brown, a nurse, cared at home for her father, Lafras, who had Alzheimer’s disease. She has his power of attorney for his medical affairs. On April 11, 2017, she placed him in an aged care facility’s short-term respite program so that she could take a business trip. Brown came back from her trip three weeks later to find her father dramatically changed. “When I arrived, he was totally unresponsive – eyes closed, mouth open, pants half down, lying in a pool of urine,” she said. He had also lost significant weight. She complained in writing to the facility:

The shocking and marked difference in my father’s appearance of the man I brought in on 11 April to the man I saw on 1 May… His weight was 67 kilograms on entering the unit.  I have finally been able to weigh him tonight, 3 [May] and he is weighing in at 58 kilograms! ... This weight was taken after having dad home for three days, of feeding my dad regular healthy meals. I would have like to have known his true weight on his return home on 1 May but due to his condition I have been unable to weigh him.[78]

Side-by-side photos of Lafras, 83, the week he went into a 20-day stay at an aged care facility in Queensland, and the week he returned home, having lost 20 pounds, April and May 2017.

© 2017 Private

A medication chart she later obtained appeared to be consistent with Lafras being given 0.5mg of the antipsychotic risperidone daily, double the amount she had given permission for, and half of a 15mg tablet of the sedative oxazepam initially, but later two full 15mg tablets per day. In her notes for the facility, it indicated that he could receive one oxazepam tablet if he became anxious but made clear that he should not be given it frequently, as he would sleep excessively for most of the next day.[79]

“Dean,” 75, has dementia and lives in an aged care facility in Northern Queensland. His wife, “Mae,” brings him breakfast and dinner each day, prompting him to eat each bite. She told Human Rights Watch that he cannot eat independently due to the medications he is on used to chemically restrain him for “behavior,” and staff do not take time to ensure he gets enough to eat.

Mae, who has her husband’s power of attorney, said her husband lost over 20 kilograms in his first five months at the aged care facility in 2017:

He was just sleeping when I was visiting before work and after work. I said he shouldn’t be on meds. I didn’t see him for two weeks because of a scabies outbreak [in the facility]. He lost two kilos. It’s a kilo a week if I don’t turn up with my meals.[80]

“Katie” told Human Rights Watch about her grandmother “Glynnis’s” serious weight loss and dehydration over about 18 months in 2017 and 2018 while she was on medication to restrain her in an aged care facility on the Gold Coast:

The weight loss started when she went on the drugs. She became gaunt. I was buying clothes for her, and she was always around a size 18. Then I had to buy size 12. I had to buy smaller bras for her. From an 18D down to a 14B. Every afternoon after work, I was going to feed her, and she was so dehydrated. They weren’t feeding her.

In October 2018 … they told us to say our goodbyes. So, I got my nurse friend to visit, and she gave [my grandmother] heaps of water, and then she could sit up. The nurse friend said she was dehydrated… She was skin and bone… Her collarbone was so far out. She hadn’t eaten or drunk for days.[81]

Glynnis recovered from the apparent dehydration but passed away two months later.

A geriatrician and neuropsychiatrist with more than 30 years’ experience working with people with dementia and other disabilities in Australia told Human Rights Watch of the negative impacts of chemical restraints:

I see [antipsychotic drugs] having a great impact on [older people’s] quality of life and physical health. And there usually isn’t a diagnosis to support these, so they are used as a chemical restraint, really.

The consequences are that we see otherwise healthy people develop horrible metabolic problems, diabetes, heart problems, stroke as a result of being on these psychotic medications. It’s all too common in the population I see of people with neurological disabilities [like dementia].

It’s a reflection of the fact that they have complex disabilities and the practitioners lack the expertise. It’s a question of making the right diagnosis and offering the right treatment, not just treatment to keep people’s behavior in line.[82]

Louis Fenech, 68, has dementia and lives in an aged care facility in southern Queensland. He experienced muscle spasms in his neck while he was on antipsychotic drugs as chemical restraints, March 2018.

© 2018 Private

Physical Effects

Louis, 68, has dementia, and his wife, Denise Fenech, holds his power of attorney. Fenech described how staff at the facility where he lives gave him drugs they said were to control his behavior:

They said he grabbed staff and held someone against a wall… He threw a soup spoon… They called a psychiatrist in… In March 2018, I was told, not consulted, that they had started him [on new drugs]. They introduced drugs for agitation, and anxiety… When on the drugs, he immediately went into a neck spasm. [His head was] forced down onto his chest, causing headaches. It was hard to eat and drink. The physio[therapist] was concerned about a drug interaction…They said they stopped giving the drug to him, and it took several months of physio[therapy], a very gradual return.[83]

 

Facilities’ Easy Access to Chemical Restraints

Registered nurses working in aged care homes, doctors, and pharmaceutical experts told Human Rights Watch that under current regulations in Australia, aged care facility staff may easily obtain the medications used in chemical restraint of older people. Facility staff can obtain a prescription for the medications used in chemical restraint, including antipsychotics, sedatives, and opioids, with a phone call at any time, day or night. Doctors can prescribe them without making an examination or even seeing the individual receiving the medications.

Raylene Liddicoat told Human Rights Watch about an illustrative experience while consulting at a facility, explaining how a staff member started her shift: “She hadn’t received handover, walked in, demanded the keys to the [medicines] cupboard, because she could see a lady escalated [agitated]. [She said,] “I’m not starting my shift because I know what she’s going to be like if I don’t give her her [diazepam] now.”[84]

Nurses or nursing assistants at facilities can ask that the prescription be issued with a PRN dosage. A PRN prescription means that the very people who are responsible for providing support to older people are the ones who can decide to give the person drugs instead of providing that support. As noted above, Human Rights Watch documented how older people in aged care facilities routinely received PRN medications.

Pamela, who has Alzheimer’s, was 72 in 2016 when staff at the aged care facility where she lived gave her risperidone PRN without the knowledge or informed consent of her daughter, who held her mother’s powers of attorney. Her daughter described an incident in which staff gave Pamela double the doctor’s prescribed maximum dose, which caused symptoms consistent with akathisia, “a state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.”[85] Pamela’s daughter described:

Mum is given risperidone, unconsented [without informed consent]. We knew nothing about it. To me, that was the attitude of the place. The following week I noticed a change, she was a little more lethargic. The following Friday I arrived to find her distressed in hallway, still in nightwear, her 1 p.m. lunch untouched. 

By 9 p.m. that night, [the facility called me] to say that she’s so highly agitated, we are worried about staff safety, and have called an ambulance. She has feces all over her. She doesn’t want to lie in a bed. They go to strap her down. I said, “Don’t you dare.” They say, “Your mum’s on risperidone; we’ve given her two doses.”

They’ve [given her] four doses [of risperidone] in less than 24 hours. We didn’t know she was on it.[86]

Dr. Harry McConnell, a neuropsychiatrist and geriatrician with over 30 years of experience in aged care in Australia described seeing his patients with akathisia linked to antipsychotic drugs:

It’s an inner restlessness, to which an older person is particularly susceptible. When someone prescribes, they think they’re helping, but they cause the problem. Nothing will settle you down when you have [akathisia]. When you have language problems and cognitive problems it will make it very hard to express what’s going on. It manifests as anxiety and aggression.[87]

Raylene Liddicoat, director of Simply Chronic Care, a nursing consultancy working in aged care facilities, has been a nurse for 30 years, and in management and senior leadership roles in aged care facilities since 2008. She criticized the ease with which aged care facility staff can obtain PRN prescriptions for medications to manage residents’ behavior. She explained the process based on her long experience: “If a nurse writes the note saying the person was upset, that GP’s going to say, ‘Yes, I’ll put them on a PRN.’ I don’t like PRN medications as psychotropics. It’s probably helping the helper more than the resident.”[88]

Veronica, a practicing registered nurse (RN) in New South Wales who has worked in aged care for 20 years, told Human Rights Watch that often due to the lack of staffing and training, facility staff resort to medication when residents experience challenging behavior and that medications are easy to obtain. She said, “Nurses will ask for increases in medication because the only thing she has in her back pocket is pain meds… In aged care, you can reach a doctor over the phone for medications, with someone interpreting the patient for the doctor. The doctor may never see the person.”[89]

Veronica also noted that this does not have to be the practice. “In this facility, we don’t have anyone on PRNs,” she said. “There is more abuse with that. Medication is just not the answer. We need symptom management. [Facilities] don’t always have enough staff to support everyone.”[90] 

Dr. McConnell, the geriatrician and neuropsychiatrist, explained the significant risks with PRNs:

There’s a huge problem with the PRN’s. I don’t really like using them… I don’t like using benzodiazepines [sedatives] and antipsychotic drugs as PRNs. [Often], you’ll see [a patient with] a regular dose, and then additional PRN’s of a similar medication. In a 24-hour period people can get quite a lot of medication that wasn’t intended. The effects of that are that person being over-sedated.[91]

Juanita Breen, a pharmacist and professor, told Human Rights Watch that her research on chemical restraints in aged care shows significant PRN use: “There is a lot of PRN use. It’s totally inappropriate, because usually the nurse decides when it’s being given, and may not refer to when it was [last] given, resulting in overdosing [too much medicine].”[92]

Facilities’ Responses to Complaints

Family members of people in aged care facilities described the difficulties they faced when raising concerns and complaints about chemical restraints with facility doctors, managers, and other staff. They talked about aged care administrators intimidating and attempting to force facility residents out. Other tactics included facility administrators applying to state guardianship bodies to remove persons with powers of attorney chosen by residents.

For example, Gene, 85, had dementia, and lived in a facility for one and a half years without being restrained. In January 2018, the facility told his daughter, Lisa, that he hit a nurse, and “needed tablets.” Lisa, who held powers of attorney for her father, said that the doctor and facility staff refused to acknowledge and address her concerns with his excessive sleeping, as detailed above, and instead pressured her to remove her father from the facility. At the meeting she requested with the doctor, she was shocked to find six other people at the meeting, beside the doctor: the lifestyle manager, duty manager, registered nurse, manager, assistant manager, and clinical nurse manager. She said: 

I was alone in the meeting. They were intimidating. They were saying that if I didn’t allow for this [he could move out]. The doctor said: “Oh, there’s another [aged care facility] that would take him that is more culturally appropriate.” (My father speaks Italian.) They suggested a far [away] home. I said it was too far. The doctor said “Well, you don’t have to walk there.”[93]

In another case, “Chloe” talked about reprisals from the staff when she filed a formal complaint about medication use for her mother, “Judy,” 91, whom Chloe had found unresponsive in her dementia unit’s lounge in November 2018.  Chloe told Human Rights Watch:

I made an incident report, with their form. I used the form from the intake packet. After that, I told the GP working [at the aged care facility I didn’t want her restrained on drugs]. The doctor said she couldn’t [stop] it, but she could halve it. She said she needed a wean.

After this, the nurses gave me a hard time. Two nurses approached me to say [my mother] was aggressive and needed more medications… [But I saw that] she hasn’t had an aggressive episode since halving the drugs. She still walks quite well and sweeps her floor there… She was worse on the medications, but they wouldn’t admit it.[94]

Chloe also called the Mental Health Commission in Queensland in January 2019, regarding chemical restraint of her mother. The commission referred her to ADA Australia for advocacy support with the facility and a few months later visited the facility and investigated. At a meeting with the facility staff shortly after the investigation, a nurse told Chloe to “get the commissioner off our backs.” At the time of the interview with Human Rights Watch, Chloe had not been given any information about the outcome of the investigation.[95]  Judy is still living in this facility.

Mark Viney told Human Rights Watch about the response of the facility in Queensland where his father lived after Viney made two formal complaints to the Aged Care Complaints Commission in 2017 about chemical restraint of his father:

The general manager at the next meeting… started making out I was making it impossible for them to do their jobs. The regional manager said I’m being unreasonable, asking for carers to do more things…

I put in a complaint to the federal government body… The facility swore in an affidavit that they weren’t trying to get rid of dad.

In January 2018, ADA [Aged and Disability Advocacy Australia] came to help…  ADA Australia told me that the facility had contacted the Adult Guardian of Queensland to try to have me removed as my father’s guardian. I actually never saw anything; ADA Australia told me. [Fortunately] their submission didn’t go anywhere.[96]

Staff in aged care facilities described different approaches to staff complaints. One facility manager told Human Rights Watch that if a resident or family member has a concern, then the manager will ask that they meet, together with other relevant staff. This manager indicated that she also recommends a family mediation service, rather than the government-designated aged care advocacy service.[97] A nurse working at another facility said that they give each new resident and their family members information about complaints systems and advocacy services and that it is also included in the patient handbook that each resident receives.[98] 

Informed Consent

In the cases documented by Human Rights Watch, doctors, nurses, and other facility staff did not ask for consent for medications that were used to chemically restrain people or from any individuals receiving the medications. Also, medical personnel often did not seek informed consent from relatives, who in all the cases that we documented had a power of attorney to make health decisions. Several interviewees described to Human Rights Watch the shock and confusion they experienced when they learned about medications given to their relatives only when they received chemist (pharmacy) bills for the medications or otherwise happened upon medical records. Some interviewees said that facility staff gave medications even when family members holding powers of attorney specifically refused.

Laws on informed consent are complex in Australia and governed by state and territory legislation.[99] Health departments for most states and territories issue guidelines on some form of consent for health care.[100] However, there is no clarity on requirements for obtaining informed consent for medical treatment in aged care facilities.

In the October 2019 letter to Human Rights Watch, the Department of Health said, “The responsibility for seeking informed consent of the consumer or their family for prescription of medications, including psychotropics, rests with the prescriber (rather than the approved provider).”[101] The department further specified that an aged care provider “has no power to impose the obligation to seek informed consent on visiting medical practitioners or nurse practitioners.”[102]

At the same time, the Aged Care (Single Quality Framework) Reform Act, 2018, a regulation that applies to all aged care facilities that receive Commonwealth government funding,[103] requires that, “Each consumer is supported to exercise choice and independence, including to: (i) make decisions about their own care.”[104] An example it offers in guidance to providers of aged care services, is “Consumers say the organisation supports them to make decisions affecting their health and well-being.”[105]

Australia’s international legal obligations require informed consent for all medical treatment and interventions, as a fundamental aspect of human dignity, bodily integrity, and freedom from torture and ill-treatment.[106] For persons who may wish to have support in making decisions, the government should ensure that this is available. Forms of support are detailed below in International Standards

“Marie” said she knew something was deeply wrong after returning from holiday to find her mother unconscious and strapped by her stomach to a chair in the aged care facility in Southern Queensland. She had her mother’s power of attorney, and decided to investigate her care more closely:

I looked on the chemists’ bills… I see [new drugs] started when we went away. I rang the chemist, who said, “[The drug] is to calm people down.” As I’m going through [more bills]; I see it again…

I rang the doctor, saying, “You prescribed risperidone. Could you explain why?” Because the nurses tell him to. On the strength of what the nursing staff told him.

I got information from the internet, printed the [United States government] black box warning that said it would [increase risk of] death. They said, “That’s American.” I went directly to each nursing staff with the black box warning. They kept restraining after I said not to.[107]

Mae said that she discovered that staff were chemically restraining her husband, Dean, who lives in an aged care facility in Northern Queensland, whose case is described in more detail above. She had learned he was on olanzepine PRN (a sedative), endone (a narcotic pain reliever), and tramadol (a narcotic-like pain reliever) after checking the pharmacy bill and discussing it with her general practitioner in March 2018.

She then started meeting with facility staff and doctor, together with an advocate, asking that they stop using the drugs. In September 2018, she took her husband home for a visit and saw that the facility sent him home with endone and targin (a narcotic pain reliever). After Mae’s repeated meetings with the facility staff, in February 2019, they agreed to begin reducing some of the drugs by lowering the dosage. Mae said that once they decreased the dosage, Dean was “actually having a life” and able to walk with support. At the time of the interview with Human Rights Watch, the facility had not fully stopped all chemical restraints.[108]

Ray Ekins’ daughter, Susan, who holds her father’s powers of attorney, found that he was on antipsychotic medication. She had asked the geriatrician about his drastic emotional and physical changes, as described above, and the doctor made no mention of medication.  She investigated further:

I asked for his medical chart to be sent to a new doctor I was working for as a receptionist. It came across my desk. Olanzepine is contraindicated for people with dementia, and it causes Parkinsonian symptoms. He had been on it for 15 months! We moved him immediately, and got him a new GP, and weaned him off them.[109]

In some cases, nursing staff and doctors gave patients medication even after relatives with powers of attorney forbade it. For example, David Viney, 88, has mild dementia and has had a major stroke. He gave his son, Mark, an enduring power of attorney for his medical affairs. In 2017, the facility’s geriatrician placed David Viney on quetiapine, an antipsychotic, which caused him to sleep excessively and have difficulty eating.

Mark complained to his father’s GP, who acceded to Mark’s request that his father no longer receive quetiapine or any medications to control him. Three months later, the facility’s geriatrician prescribed new, sedating medications, without the informed consent of David or Mark Viney. The geriatrician called Mark after prescribing them, angry that he and the general practitioner had not followed his earlier prescription:

He said, “Who do you think you are? Where’s your medical degree from? Good luck getting him off the drug I put him on.” I told him not to see my dad again.

At 2 p.m. the next day, they [aged care facility staff] came to give my dad meds. The staff told me that the doctor upped his dose to four times per day. She said, “I have to give it to him.” I said, “No you don’t. I have the PoA [power of attorney], and I asked my father, and he refused it.”[110]

As noted below, a new manager began working at the facility and David Viney is no longer being chemically restrained.

In some cases, staff at aged care facilities hid from relatives the fact that they were giving certain medications to an older person. Katie told Human Rights Watch that she learned in December 2017 that her grandmother was being given drugs that caused sedation after her grandmother had wandered out of the facility:

I spoke with [clinical nurse manager], who said … we were told by this lady [the manager at the facility] that the drugs would be the best thing, that we would be harming her [without them]. We were not told anything about antipsychotic drugs…

[She told me:] “It’s harmless medication. Ninety percent of our patients here are on these. It will be beneficial. Reduce stress levels. It may be a very small amount of[diazepam].”

[Later,] her chart was left by a nurse. I opened it and took a photo and showed my doctor. She was actually on quite a high dose of an antipsychotic, plus [diazepam]. The doctor was incensed because they had taken her off all of her other medications for her cholesterol, and heart medication. My doctor said the dose [of the antipsychotic] was quite high.[111]

Life after Chemical Restraints

Some family members told Human Rights Watch that they were able to have their relatives weaned off medications used to restrain them, by moving them to a different facility or back home, working with a different doctor, or, in one case, hiring an aide. They described how their relatives no longer slept excessively and could communicate and engage in daily activities more.

One husband said he and his family fought for his wife, Monica, whom he lives with in a facility near Melbourne, to be weaned off the drugs used to restrain her. They share a room in the facility, and he holds her power of attorney. He saw how staff gave her the medications when she cried out, wandered around the facility and did not sit still, disrupting the staff in their routines. After extensive negotiation, Monica’s doctor and facility staff agreed to wean her from the medicines after he paid for a private carer to stay with her in the facility 13 hours each day. He said his wife went from being hunched and unbalanced, to being able to sit, eat, greet people, and dance when her grandson visits and sings.[112]

Their son told Human Rights Watch,

On medication, her essence was gone. She could not lay down, had restless legs… I couldn’t calm her down. She’d be hollering and wailing… When she was on heavy medications, she wasn’t [engaging in group activities like] playing with balloons. When she was off, she could play with them. Interacting brought her to life.[113]

David Viney, 88, has mild dementia and has had a major stroke. Staff at a facility put him on chemical restraints after which he slept all day and had difficulty eating, swallowing, and sitting upright. When his son, Mark, complained, the facility took him off the drugs, and according to him, his father recovered significantly:

They stopped the drugs, and he was himself again by the end of three days. He was telling jokes and laughing. I hadn’t seen him that way for months. He can remember things. They didn’t want to take him off the drugs. I said I don’t want him on. Told them to cease.[114]

Ray Ekins, 78, has dementia and was discharged from a hospital after surgery in 2013 back to the aged care facility where he had been living. At the hospital, doctors had prescribed a new prescription for olanzepine, an antipsychotic prohibited for use in older people with dementia, to be given three times per day. His daughter, Susan, recalled the changes after the medication started:

At that stage he couldn’t walk, only shuffle, he was very, very depressed, just crying all the time. And he couldn’t swallow… He would say, “My mind is a hell to me.” He wouldn’t be engaged in a conversation… All his symptoms are side effects of the antipsychotics, and they disappeared after he went off.[115]

Susan asked his geriatrician about these significant changes, who told her that her father was old, and she and Ray would just have to accept it. Unable to change the doctor’s decision, Susan moved him to a new facility in 2014, which weaned him off the medications immediately. She described the change:

Now, he’s very, very much like his old self. He’s Irish, with a thick Irish accent, and he’s hilarious. He’s very funny. He likes to just go out and have lunch. We’ll often take a picnic. We’ll go for walks on the beach. If there’s music on in a pub, we’ll go in the afternoon, when he’s not too tired.[116]

Ray Ekins, enjoying time with his sister Brenda (left), and his daughter, Susan Ryan, in 2018 after he was no longer being given antipsychotic drugs.

© 2018 Private

“Elsa,” whose mother lost significant weight while on quetiapine, an antipsychotic, moved her mother to a new facility 2014, and the staff there agreed to take her off the drugs. Elsa described the improvements in her mother, but also lasting consequences:

She never really recovered from the drugs. She never got mobile again… She’d lost all her muscle tone, any muscles that could hold her up vertically were gone… She did perk up; we could take her out in the sunshine, and she would enjoy it. She was a lot more alert, but she lost her mobility in amongst it all.[117]

When Gene’s daughter saw that he was sleeping during morning and afternoon visits while on medications to control his behavior, as described above, she found a different doctor who took him off the drugs. Her father never fully recovered, however:

My dad was off all drugs, but he wasn’t even swallowing. The doctor took him off [the drugs] and said, “I think [the medications] made him unable to swallow.” My dad didn’t regain that ability.

The new doctor said he had had a big stroke and lots of little strokes [while on the medications]. He said this three weeks before my dad died [of stroke].[118]

III. Experiences with Government Complaint Mechanisms

People can make complaints about treatment, conditions, or other issues in aged care facilities to the Aged Care Quality and Safety Commission (ACQSC) (formerly known as the Aged Care Complaints Commissioner), the primary government agency responsible for monitoring aged care in Australia.[119] It receives complaints and accredits according to the Aged Care Quality Standards for Australian government-funded aged care services by accrediting, assessing, monitoring, and resolving complaints received regarding subsidized aged care services.[120] Starting in January 2020, it will also incorporate “aged care approval and compliance functions” from the Department of Health.[121]

The ACQSC can take the following actions in response to complaints: 1) early resolution, whereby the ACQSC advises the complainant, calls the service provider, or takes other similar steps; 2) refer the complaint to a service provider to address; 3) facilitate a resolution with the service provider and complainant; or 4) conduct an investigation.[122] The ACQSC may also ask the complainant and service provider to undergo a formal mediation process external to the ACQSC with an independent mediator.[123] Engaging with an independent mediator involves a separate cost, one that the complainant and the service provider “would need to discuss and agree to.”[124] In its October 2019 letter to Human Rights Watch, the Department of Health stated that the ACQSC notifies it of any findings of non-compliance and the department may take regulatory action, including imposing sanctions. However, the department did not provide further detail as to the nature or frequency of such sanctions.[125]

Individuals can also file complaints in the case of death with the local coroner, the Australian Department of Health or, local entities such as a health ombudsman, department of health, or in some places the local human rights commission, depending on the state or territory, or the police.[126] Coroners investigate the cause of death in individual cases warranting an inquiry, and in some instances, conduct inquests into multiple deaths where similar factors may have contributed to each death. Their reports and recommendations can serve to highlight systemic issues.[127] A person who has a complaint about a doctor or nurse, including about inappropriate prescribing, may complain to the Australian Health Practitioner Regulation Agency (AHPRA). Sanctions may be imposed against a doctor or nurse if their conduct is found to fall short of statutory standards.[128]

The ACQSC closed 5,738 complaints in the year ending June 30, 2018. Seventy-five percent of the complaints were about residential aged care. The remainder came from other areas it oversees, such as home care.[129] Complaints are finalized with a final decision. This may be with an agreement or other document stating that the concerns have been resolved between the complainant and the facility or the ACQSC believes the issues to have been addressed. If the ACQSC believes the service provider is not meeting its responsibilities, it may direct the service provider to make changes. The concern can be referred to the ACQSC Quality Assessment and Monitoring Group for other action, such as a compliance inspection or audit. It can also be referred to the Department of Health for further examination of compliance with the law and regulations.[130]

In its October 2019 letter to Human Rights Watch, the Department of Health stated that the ACQSC “assesses the use of chemical restraint during complaint handling processes,” as well as during its accreditation, assessment, and monitoring (see additional details below regarding the ACQSC). It said there were a total of 44 complaints about chemical restraint in 2018 and 18 in the first quarter of 2019. The department did not provide any information regarding the specific actions taken or outcomes of these complaints.[131] 

A complainant unsatisfied with a decision can request that the ACQSC review it again; or send a complaint to the ACQSC about how it managed the complaint; or ask the Commonwealth Ombudsman to review the ACQSC actions in the complaint process.[132]

Family members of aged care facility residents who filed complaints about chemical restraint to the Aged Care Complaints Commissioner (ACCC, as of January 2019, the ACQSC) and other agencies described that in some cases, complaint mechanisms were difficult to use. Some other family members said complaints officers referred them back to the facility, with complaints not being resolved.

For example, “Estelle,” 90, has dementia, and has been living in an aged care facility in Queensland since September 2016. In January 2018, she fell while on risperidone. Her daughter “Imogen,” who has her power of attorney, put in a complaint about the use of medication and the accident to the ACCC (now the ACQSC). Imogen told us:

I lost faith in [the ACCC] because they are supposed to be there for the resident, but I don’t think they fought enough. They didn’t investigate, just rang up the facility. I would use ACCC as a resource, but I wouldn’t rely on it. They believed the facility over me.

I went to my federal MP [member of parliament] – I wanted an appointment. They said to complain to the ACCC. When we complained, we were shut down.[133]

“Marie’s” 99-year-old mother had been given risperidone without her knowledge or informed consent in a facility on the Gold Coast. She had additional complaints about the facility using a physical restraint and inadequate numbers of staff to support residents to eat at mealtimes. She explained her experience when she called to file a complaint in 2016:

I rang up the Queensland Aged Care Ombudsman [now the Aged Care Quality and Safety Commission]. They were so rude I was in tears. They said, “You’ve got three [complaints], and you can only have one,” and she was angry. She said, “Make up your mind! You can have just the [complaint about] risperidone, the restraint on your mother’s stomach, or not feeding her.” It was cruel. I just left it.[134]

Katie told Human Rights Watch about her difficulty finding out how to file a complaint and initiating a complaint regarding treatment of her grandmother, including sleeping excessively all day while on medications, serious weight loss, and other concerns in November 2017. “It took two days to get it started,” she said. “It’s not easy. I rung them, emails, wait for calls back.”[135]

The complaints officer of Queensland Aged Care Complaints Commissioner

responded to Katie in an email that she would contact the aged care facility and ask a manager to meet with her and “ask the provider to report back to me with the agreed outcomes.”[136] Katie met with the facility manager, and the manager told her they would change her grandmother’s medications, but not stop them as Katie requested. She said, “They said they were going to cut out some medications and leave others. The chemist said [Glynnis] was on a lot more medications, and I spoke to with the doctor, who confirmed.”

Katie said that after this exchange, “The aged care complaints outcome? They simply said what the manager said… Aged care contacted me two months later. I told them I wasn’t happy with the outcome, and that they didn’t follow through. They told me I could put in a new complaint. After that, I just did everything myself.”[137] She started going to the facility daily to feed her grandmother, who was too sleepy to eat while on the medications.

Mark Viney said that he made two complaints to the Aged Care Complaints Commission (ACCC) (now the ACQSC) in mid-2017 and early 2018 about heavy sedation of his father, and the facility’s efforts to remove his father from the facility. “[I] put in another complaint [in 2018] to government saying, ‘They’re still trying to get rid of him,’” Viney said. “Complaints said they would help, then they went on holiday.”[138] They never contacted Viney again. He said that a new manager started at the facility and staff are no longer sedating his father.

“Jessica” went to great lengths to try to stop chemical restraint of her mother “Linda,” who has dementia and has lived in a facility since 2015. Jessica first raised the medications issue, among others, directly with the facility staff in 2017, who refused to make changes. She then filed complaints with the ACCC in May 2017. The commission responded by instructing her to meet with the facility staff again. She described that September 2017 meeting:

[My family] had a meeting with the facility… We went in with heaps of evidence, so we went in wanting a response from the provider with solutions. They sat down and talked in circles. The CEO … said, “We are not here to talk about the future. We are here to talk about what is in your complaint.”[139]

The facility staff refused to stop using the chemical restraints. After she filed a second complaint in March 2018, the commission visited the site. The commission closed the second complaint in January 2019 without requiring the facility to make any changes. She said, “it’s frustrating, they didn’t do much.”[140]

Jessica then tried to speak with an accrediting officer from the Aged Care Quality and Safety Commission during the government agency’s re-accreditation for the facility, hoping this might spur a resolution:

I knew accreditation was coming; I was hoping our issues would be picked up. They were only accredited to April 2019. When I met with the accreditor, instead of sitting down and hearing my concerns, [he told me how I should] deal with the facility manager. I brought all this evidence, meetings, emails, showing how we used internal feedback forms, trying to resolve it internally … I have complaint fatigue. And a fear of reprisals [from the facility].[141]

The facility had threatened to bring a bullying case against her, after she raised her voice with a nurse, having stayed up all night caring for her mother. “[The facility CEO] tried to frame it as a workplace health and safety issue,” she said. “As if you come in here and speak inappropriately to staff it threatens their safety.” She has asked for this to be formalized in order to be given the right of reply. At the time of the interview with Human Rights Watch, the facility had not acted against Jessica.[142]

In June 2017, Julie McAdams made a formal complaint to the Aged Care Complaints Commission about the “heavy sedation” of her mother, Avis Gross, 90, by staff at the aged care facility where she lived. The commission did not examine her case but referred her to the Australian Health Practitioner Regulation Agency (AHPRA) saying that psychotropic medications prescribed by a doctor was not within its jurisdiction. She complained again in November 2018, shortly before her mother passed away, and they again did not intervene.[143]

In December 2018, McAdams complained to the Commonwealth Ombudsman about what she saw as unsatisfactory responses she received from the Complaints Commission. In January 2019, the ombudsman’s office declined to investigate, finding nothing wrong with the commission’s actions. McAdams then appealed for a procedural review of the Commonwealth Ombudsman’s decision. The internal review concluded there were no problems with the way its office had handled her complaint.[144]

“Amber” filed a complaint with the Australian Health Practitioner Regulation Agency (AHPRA) about the doctor who prescribed drugs used to chemically restrain her mother “Phillipa,” 95, in an aged care facility. She had called the in-house doctor for the facility to ask about the drugs, and she said that he said that “he only prescribed what the nursing home told him.”[145]

The existing model of complaints does not appear to be uniformly addressing the complaints of older people in aged care facilities to a unified, high standard, and complaint mechanisms are no substitute for strong regulation that is fully enforced to protect older people from chemical restraint.

IV. Government Response

The Australian government has acknowledged problems in the aged care sector and taken some steps to reform. These steps include a Royal Commission of Inquiry into Aged Care Quality and Safety, a new regulation on physical and chemical restraint, and revised principles and guidance for providers of aged care services. Australia’s Council of Attorneys General has also created a National Plan to Respond to the Abuse of Older Australians, which includes chemical restraint in its commonly recognized forms of abuse.[146] However, these steps have not resulted in prohibitions on the use of chemical restraint, allowing staff of aged care institutions to continue this practice.

In September 2018, Prime Minister Scott Morrison announced a Royal Commission of Inquiry into Aged Care Quality and Safety (the Royal Commission).[147] It is tasked with examining the quality of aged care services and how these services currently meet the needs of older people; mistreatment and “all forms of abuse,” and how to best deliver services to “the increasing number of Australians living with dementia.”[148] The Royal Commission has been conducting hearings in towns and cities across the country and has received thousands of submissions from individuals and organizations.[149] Chemical restraint is one area of inquiry.[150] The Royal Commission is expected to deliver its final report in April 2020.

Aged Care Quality and Safety Commission

In 2019, the Aged Care Quality and Safety Commission (ACQSC) revised its guidelines for aged care providers, known as the Aged Care Quality Standards. The User Rights Amendment (Charter of Aged Care Rights) Principles 2019, also amends the Quality of Care Principles, 2014. The government has issued guidance on this in the form of the Aged Care Quality Standards. The revised standards acknowledge the problems of chemical restraint but allow their use. Regarding antipsychotic medicines, the guidelines state:

There is concern that these medicines are being prescribed inappropriately in people aged 65 years and over for their sedative effects – that is, as a form of chemical restraint for people with psychological and behavioural symptoms of dementia or delirium.[151]  ... If an organisation uses restrictive practices such as physical or chemical restraint, these are expected to be consistent with best practice and used as a last resort, for as short a time as possible and comply with relevant legislation.[152]

Each aged care provider is to determine its own best practices.[153]

The 2019 Aged Care Quality Standards do not require facilities to report their use of chemical restraint. They only require that facilities demonstrate “a clinical guidance framework including ... minimising the use of restraint.”[154] The standards require providers to self-report three quality indicators: pressure injuries; the use of physical restraint; and unplanned weight loss.[155]

The ACQSC is responsible for inspections of facilities and monitors implementation of the Aged Care Quality Standards.[156] Quality assessors began unannounced visits to aged care facilities for the first time in 2019.[157] Of the 249 ACQSC site audits of aged care facilities in the first quarter of 2019, behavioral management was the second most frequent “not met” outcome, and clinical care was the fourth most frequent “not met” outcome.[158] The Department of Health reported to Human Rights Watch that in 2018, medication management was one of the five most frequent “not met” outcomes in residential care audits, and the most complained about issue. The department did not provide any details about chemical restraint findings from the ACQSC audits.[159]

Currently, it has the power to revoke accreditation of a service, meaning that they are unable to receive Commonwealth subsidies. From January 1, 2020 it will have compliance and enforcement functions, which currently remain with the Department of Health.[160]

Failure to Prohibit Chemical Restraint

Australian commonwealth laws do not prohibit chemical restraint. In July 2019, a new regulation issued by the Commonwealth Minister for Senior Australians and Aged Care, drafted by the Department of Health, purports to minimize the use of physical and chemical restraint. It set restrictions on physical restraints, including an explicit requirement for consent to their use, unless necessary in an emergency. It did not set those same limits and obligations regarding chemical restraints.[161] It amends the Quality of Care Principles 2014, the animating regulation for the Aged Care Act. Instead of eliminating the use of chemical restraint, the regulation tries to regulate the practice.

The regulation allows aged care facility staff to use chemical restraint for anyone in aged care if a health practitioner has assessed an individual as “requiring the restraint” and has prescribed the relevant medication. It requires the decision to use the restraint to be documented but does not require prior informed consent of the person or a representative, such as a family member. It says the representative should be notified in advance “if it is practicable to do so.” According to the October 2019 letter from the Department of Health to Human Rights Watch, referring to aged care facilities responsibilities under the regulation, providers must “inform the consumer’s representative around the time of administering the medication.”[162] The regulation does not state that this representative must be the individual’s chosen proxy, such as a person they have given powers of attorney.

The Department of Health stated at a parliamentary hearing about Minimising the Use of Restraints Principles 2019, that it does not regulate prescribing practices, and therefore does not regulate informed consent, safeguards, or a requirement of alternatives.[163] Other regulatory agencies, namely the National Disability Insurance Scheme, have chosen to regulate the practice of chemical restraint, including these prescribing practices, informed consent, safeguards and the requirement of alternative measures, among others.[164]

Pharmacists, lawyers, and policy experts have criticized the regulations for failing to prohibit chemical restraint, perpetuating the use of restraints to control people’s behavior, and failing to include a requirement for informed consent and provisions to allow for refusal.[165] The rules also do not include any specifications about complaints and recourse – there is no penalty or sanctions specified for facilities or staff that inappropriately administer medication. The regulation does not specify which entity is tasked with monitoring it.

The government does not have a clear policy plan to eliminate chemical restraint. In the October 2019 letter from the Department of Health to Human Rights Watch, the department noted that the Australian government spent AU$4.1 million (US$2.7 million) between 2013 and 2016 on projects to reduce “the use of sedative and antipsychotic medications in residential aged care facilities.”[166] In 2019, however, the letter states, the department’s focus is on education and “messaging,” including on the “appropriate use” of these drugs in aged care facilities as well as messaging on “alternative management strategies for behavioural and psychological symptoms of dementia….”[167]

In a July 2019 letter to Human Rights Watch, Leading Age Services Australia, a trade association of aged care providers, said chemical restraint should be a last resort, but appeared to acknowledge that not all providers implement this in practice:

In LASA’s view, the principle that restraint should be a last resort is widely accepted across the sector. There are few age services providers that would not support the principle of minimising the use of restraint. However, there is variation in the way that providers are able to operationalise the principle of minimising restraint.[168]

Failure to Set Effective Standards for Supportive Levels of Staffing

The Australian government has yet to ensure standards for supportive levels of staffing and training of staff in aged care facilities. Families of older people with dementia told us how low numbers of staff negatively affected the quality of care and increased the use of chemical restraints. Aged care facility staff, including registered nurses, reported the difficulties of providing adequate care due to limited staff.

Australian law does not require a minimum number of staff hours per person per day or a minimum number of staff in aged care facilities. Aged care providers must ensure staffing be “adequate” and “appropriately skilled.”[169]   

The right to health requires governments to ensure that health services are appropriate and of good quality.[170] The Australian Nursing and Midwifery Federation, the Australian Medical Association, the Royal Australian College of General Practitioners, and the Australia and New Zealand Society for Geriatric Medicine wrote in a letter urging legislation on staffing in aged care that “Studies identify that the main reason for missed care, or low-quality care in residential aged care facilities is that there is not enough staff available.”[171] Numerous studies around the world have shown that adequate staffing—sufficient quantity, training, and consistency of staff—is critically important to the quality of care aged care facility residents receive, and that inadequate staffing leads to substandard care.[172] Gross understaffing and under-training of staff may contribute to the use of chemical restraint.

Elsa, a former nurse, said that her mother, 86, who has dementia, was chemically restrained in an aged care facility in New South Wales in 2014. Elsa described how she would visit her mother to find her lying in soiled diapers, with the nurse call bell unanswered:

In the high care facility, there were maybe 100 [residents]. I would only ever see a maximum of four staff. [T]here were times I went to visit my mom and she was sitting in urine and feces, had been for a long time, and the light was on. It was on numerous occasions. When she rang the buzzer to go to the toilet, no one would come.[173]

A registered nurse with more than 40 years of experience told Human Rights Watch about how he felt compelled to leave his job in an aged care facility due to low staffing and the pressure and risk he experienced:

I resigned late last year, reluctantly, because my license was at risk... It’s impossible to supervise the numbers [of residents]. I worked every Sunday, with close to 80 or 90 residents, and no other RN [registered nurse] staff on Sunday… RNs were responsible for medication management; that consumed most of my day…

I was worried about what I’d find when I got there at 6 a.m. One shift starts at six, another ends. The providers don’t allow handover. There are falls, medications, messages from families, visits from doctors. But you’ve got to hit the ground running, and you can’t [take time to] go through [handover] notes.

I’d looked after one gentleman I’ve known for many years. He was dying. I simply didn’t have the time to spend with him that day I was working. It was very saddening. He was a lovely mate, and finally I just couldn’t provide the care I felt I needed with him. The only real time I had to spend with him was after my shift. It was going to hell in a handbasket.[174]

A registered nurse working in several aged care facilities across New South Wales described the low staffing that she typically encountered in her daily work:

In a hospital, the ratio of RN to patient is one nurse for three or four patients. In aged care it’s two care staff to 30 residents, and one RN for 200 residents, in different facilities. How are you supposed to effectively provide service? All it takes is two people to fall out of bed, or one person to be transitioning back to the facility from the hospital, and all the care staff is tied up. Staff is always stretched in the current environment.[175]

The Australian Nursing and Midwifery Federation’s National Aged Care Survey 2019 found that nearly 90 percent of aged care staff reported current staffing levels at their facility were not able to provide an adequate standard of nursing and personal care to residents. Problems with dementia management were one of the top concerns of aged care facility staff.[176]

Training of aged care staff is another key area of concern. One carer working in an aged care facility in Northern Queensland told Human Rights Watch about the training she receives: “There’s in-house training for hygiene and lifting, but not dementia. Every six months there’s a refresher. Nothing about dementia.”[177] A physical therapist with almost nine years of experience in aged care noted, “There is mandatory training for all staff on fire safety, infection prevention, and physical handling. There is no formal mandated training on behavior management. It’s up to the provider.”[178]

Juanita Breen, a pharmacist who has studied chemical restraint in aged care facilities in Australia, noted that staff levels and appropriate training are essential to move away from the use of chemical restraints. She said, “If we eliminate restraints, we need a workforce that understands how to manage dementia. There is no training for the workforce. I think it’s such a complex problem: legislation is needed and underlying that there needs to be a lot of education.”[179]

One study of a training for bathing people with dementia in the United States found it produced a statistically significant reduction in agitated behavior and antipsychotic drug use.[180]

Aged and Community Services Australia, a trade association for non-profit aged care providers, said in a letter to Human Rights Watch regarding the issue of staffing requirements:

  • We do not support fixed staffing ratios in residential facilities for a variety of reasons, including:
    • Facilities and variable acuity levels, both within facilities over time and between different facilities;
    • Fixed ratios do not account for the variety of differing service models within the sector; and
    • Fixed ratios do not account for other factors such as building design, technology etc.
  • However we support appropriate staffing levels underpinned by an appropriate skills mix and timely access to a responsive external health professional and specialist workforce.[181]

Older Australians should have the right to be free from chemical restraint. They should have easy access to complaint mechanisms empowered to address complaints about chemical restraint. Older people with dementia should have support from trained staff at properly staffed aged care facilities to file a complaint if they request such assistance.

The existing of government response to chemical restraint has been lacking. A regulation currently permits chemical restraints; the complaints system, though changed, still lacks navigability and has been unclear in its authority to address complaints of chemical restraint; broader systemic issues of undertraining and understaffing at aged care facilities persist.

V. International Standards and Australian Law

International Standards

Prohibition of Torture and Other Cruel, Inhuman, and Degrading Treatment

Australia is party to several international conventions that prohibit torture and other cruel, inhuman or degrading treatment or punishment, including the International Covenant on Civil and Political Rights, the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, and the Convention on the Rights of People with Disabilities (CRPD).[182] 

People living in aged care facilities, particularly those with dementia or other similar illnesses or conditions, are persons with disabilities for the purposes of the CRPD, in that they are people who “have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[183]

In its 2013 review of Australia, the United Nations Committee on the Rights of Persons with Disabilities, which monitors state compliance with the CRPD, criticized the use of chemical restraints in relation to Australia’s obligations to prohibit torture and ill treatment. It noted that, “persons with disabilities, particularly those with intellectual impairment or psychosocial disability, are subjected to unregulated behaviour modification or restrictive practices such as chemical, mechanical and physical restraints and seclusion, in various environments.”[184] The committee recommended that Australia take immediate steps to end restrictive practices, including by establishing an independent national preventive mechanism to monitor places where they may occur, to ensure that persons with disabilities are “not subjected to intrusive medical interventions.”[185]

In 2013, Juan Mendez, then the UN special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, warned of the danger of human rights violations in the healthcare setting where the perception persists that “certain practices in health-care may be defended by the authorities on grounds of administrative efficiency, behaviour modification or medical necessity.”[186] Mendez also noted that “medical treatments of an intrusive and irreversible nature, when lacking a therapeutic purpose, may constitute torture or ill-treatment when enforced or administered without the free and informed consent of the person concerned.”[187] He also emphasized that an act may constitute ill-treatment, even if it is “intended to benefit the ‘patient’” and may “exist alongside ostensibly therapeutic aims.”[188]

Mendez stated that such violations of rights are particularly likely to occur when the “treatments are performed on patients from marginalized groups, such as persons with disabilities, notwithstanding claims of good intentions or medical necessity.”[189] He also stated that the use of a “prolonged restraint” may constitute torture and ill-treatment when used against people with mental (psychosocial or intellectual) disabilities.[190]

Mendez concluded that “it is essential that an absolute ban on all coercive and non-consensual measures, including restraint and solitary confinement of people with psychosocial or intellectual disabilities, should apply in all places of deprivation of liberty, including in psychiatric and social care institutions.”[191]

Right to Health and Informed Consent

The right to the highest attainable standard of physical and mental health is enshrined in several international human rights conventions to which Australia is party, including the International Covenant on Economic, Social and Cultural Rights and the CRPD.[192] 

In accordance with the right to health, governments have a core obligation to ensure the right of access to health care on a non-discriminatory basis, especially for vulnerable or marginalized groups.[193] Governments also may violate the right to health through the failure to take appropriate steps towards the full realization of everyone’s right to health.[194]  Allowing aged care facilities to give antipsychotic medications for purposes other than the benefit of the recipient, especially over an extended period of time, is inconsistent with the right to health. It poses threats to life and well-being from adverse side effects and increased mortality associated with antipsychotic use. 

The CRPD requires informed consent for medical treatment and interventions. [195] The CRPD committee has determined that treating an adult with medications without consent is a violation of the right to equal recognition before the law, [196] the right to personal integrity, and the right to freedom from violent exploitation and abuse, as well as the right to freedom from torture and inhuman and degrading treatment.[197]

For persons who may require support in making decisions and giving their informed consent for medical treatment, support should be provided and can take different forms. These can include:

  • Accessibility measures and reasonable accommodation in understanding medical interventions, their consequences and side effects, as well as alternatives;
  • Advance directives; and
  • The appointment of one or more support persons chosen by the person concerned.

The CRPD Committee has acknowledged that in some cases, even after serious and sustainable efforts have been made, it may not be possible to determine a person’s will and preferences, due to communication barriers or for other reasons. This may be the case with some people with dementia. In such situations, every effort should be made to make the “best interpretation” of an individual’s will and preferences.[198] Consideration should be given to all forms of verbal or nonverbal communication, as well as a person’s relevant previously manifested preferences, values, attitudes, and actions.

The special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health has expressed that informed consent “is a core element of the right to health, both as a freedom and an integral safeguard to its enjoyment.”[199] In a 2009 report the special rapporteur noted:

Informed consent is not mere acceptance of a medical intervention, but a voluntary and sufficiently informed decision, protecting the right of the patient to be involved in medical decision-making, and assigning associated duties and obligations to health-care providers… [It promotes] patient autonomy, self-determination, bodily integrity and well-being.[200]

The special rapporteur on torture has similarly noted that informed consent is fundamental to “respecting an individual’s autonomy, self-determination and human dignity.”[201]

The special rapporteur on the right to health called on states to:

[R]adically reduce medical coercion… [and] not to permit [others] to provide consent on behalf of persons with disabilities on decisions that concern their physical or mental integrity; instead, support should be provided at all times for them to make decisions, including in emergency and crisis situations.[202]

The special rapporteur acknowledged that such change was “a challenging process that will take time” but that “deliberate, targeted, and concrete actions” were needed to end medical interventions without informed consent:

(a) Mainstream alternatives to coercion in policy with a view to legal reform;

(b) Develop a well-stocked basket of non-coercive alternatives in practice;

(c) Develop a road map to radically reduce coercive medical practices, with a view to their elimination, with the participation of diverse stakeholders, including rights holders;

(d) Establish an exchange of good practices between and within countries;

(e) Scale up research investment and quantitative and qualitative data collection to monitor progress towards these goals.[203]

Key Domestic Laws

The Australian Parliamentary Joint Committee on Human Rights

The Australian Parliamentary Joint Committee on Human Rights, which examines bills, legislation and regulations for compatibility with international human rights standards, said in December 2018 with regard to specific legislation in the disability support services sector that the use of restrictive practices, including chemical restraint, “may amount to torture, cruel, inhuman or degrading treatment or punishment,” recognizing that “Australia’s obligations in relation to torture, cruel, inhuman or degrading treatment or punishment are absolute (that is, they can never be subject to limitations).”[204] The Parliamentary Joint Committee on Human Rights has also said that the use of restrictive practices (including chemical restraint) can infringe on the right to liberty and security of the person, guaranteed by the International Covenant on Civil and Political Rights and the CRPD, as well as the following rights guaranteed under the CRPD: the right to equal recognition before the law and to exercise legal capacity; the right to respect for their physical and mental integrity on an equal basis with others; the right to freedom from exploitation, violence and abuse; and the right to freedom of expression and access to information.[205] 

Of the three Australian states where Human Rights Watch conducted research, only one currently regulates chemical restraint in some form. In New South Wales, the Guardianship Act and advanced care directives apply to the provision of medical treatment in hospital settings and aged care facilities. Consent for the provision of medical treatment is generally required, though medical treatment may be carried out on an individual without consent in certain circumstances.[206]   It defines special medical treatment for the purpose of the Guardianship Act and includes any treatment that involves the use of an aversive stimulus, whether mechanical, chemical, physical or otherwise. Only the New South Wales Civil and Administrative Tribunal can consent to special treatment.[207] Victoria’s legal framework does not regulate the use of chemical restraints in aged care facilities.  Queensland does not regulate chemical restraint in aged care facilities.[208]

In Australian criminal and tort law, giving a sedating medication without consent or other legal or medical justification (such as pursuant to a court order or for emergency treatment), may be a crime, a civil wrong (a tort), or both.[209]  Human Rights Watch is not aware of any Australian prosecution or civil suit in relation to chemical restraint.

Prohibitions on Age Discrimination

Australian national laws prohibit discrimination based on age or based on disability in certain circumstances. Each of the Australian states and territories also have laws prohibiting age discrimination and disability discrimination in certain circumstances.[210] The Age Discrimination Act 2004 prohibits age discrimination in certain circumstances, including in the provision of services and accommodation.[211]  Under the act, direct age discrimination occurs when a person is treated less favorably than a person of a different age would be treated in the same circumstances, because of their age or a characteristic that pertains to, or is generally imputed to, persons of their age.[212] Indirect age discrimination occurs if an unreasonable condition, requirement or practice is imposed to the disadvantage of persons of a specific age.[213] 

Giving drugs that chemically restrain older persons will constitute unlawful age discrimination under Australian law if an aged care facility would not give the medication to a younger person in the same circumstances, or unreasonably maintains the practice of giving medications to older persons.

Prohibitions on Disability Discrimination

The Disability Discrimination Act 1992 prohibits discrimination on the basis of disability, which under law includes dementia, in the provision of services or accommodation.[214] Under the act, direct discrimination occurs if a person with a disability is treated less favorably than a person without the disability would be treated in circumstances that are not materially different, including where there is a failure to make reasonable adjustments for the person with a disability.[215] Indirect discrimination occurs where an unreasonable requirement or condition is imposed that a person with a disability is not able to comply with, to the person’s disadvantage, including where reasonable adjustments are not made to facilitate compliance.[216]

Chemically restraining a person with dementia or a similar disability will constitute unlawful disability discrimination under Australian law if an aged care facility would not give antipsychotic medication to a person who behaved in a similar manner but did not have dementia or a similar disability. Such discrimination might occur if, for example, a person with dementia is subject to a chemical restraint as a result of behavior deemed aggressive, where a person without dementia, behaving similarly, would not be subject to a chemical restraint. Further, the use of chemical restraints may constitute unlawful discrimination if reasonable adjustments, such as moving a person away from another resident whose behavior is causing the person agitation, or calming them through other techniques, are not used in preference to chemical restraint.  

VI. Recommendations

To the Minister for Aged Care and Senior Australians

  • Introduce legislation to prohibit the use of chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of staff.
  • Any new law should also ensure:
    • Informed consent for all treatment or interventions;
    • Independent monitoring; and
    • Effective, accessible, independent complaint mechanisms.
  • Ensure all policies and actions implemented for aged care are consistent with the UN Convention on the Rights of Persons with Disabilities.
  • Develop more community-based services for older people with dementia to ensure support for older people to live independently in their communities, including at home.

To Parliament

  • Pass legislation to prohibit the use of drugs as chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of staff. The legislation should include:
    • Prohibition of the use of chemical restraints and outline penalties;
    • Requirement of informed consent for all treatments and interventions from the older person or, where that is not possible, a relative chosen by them;
    • Mandatory training for all aged care facility staff in dementia and alternative methods and skills to de-escalate unwanted behavior and support the needs of people with dementia;
    • Adequate minimum staffing levels to provide support to older people;
    • Adequate enforcement mechanisms to protect older people’s rights;
    • Independent monitoring and oversight of all facilities without obstacles;
    • Effective, accessible, independent complaint mechanisms, including for individuals in aged care and their families;
    • An amendment to the Aged Care Act to expressly grant access to aged care facilities to advocates and quality assessors.
  • Consider an Aged Care Ombudsman role, tasked with assisting Australians using the Aged Care system, and making policy recommendations, completely independent from the Department of Health and the Aged Care Quality and Safety Commission.

To the Department of Health

  • Strengthen the regulatory environment to end use of chemical restraint by addressing the following areas:

Ensure Free and Informed Consent:

  • Require a standardized protocol for obtaining free and informed consent from the individual whose care is concerned, including with support as needed in the decision, or the appointed representative of a person with dementia, as long as this representative is chosen freely and tasked with reflecting the individual’s will and preferences before, during, and for the continuation of medical treatment. 
  • Ensure meaningful penalties for failure to obtain informed consent.
  • Develop and implement models of supported decision-making to enable people using aged care services to make their own decisions about treatment and care.
  • Implement programs that ensure equitable access to preventative, diagnostic and care services for all people with dementia, including social and rehabilitative support. 
  • Introduce national and local public health and awareness campaigns to reduce stigma around dementia.
  • Ensure strong protections against eviction of older people from aged care facilities to better protect them from coercive threats of eviction.

For Adequate Minimum Staffing in Aged Care Facilities:

  • Require a 24/7 registered nurse presence in all aged care facilities and establish stronger minimum staffing levels and ratios or other enforceable minimum requirements to ensure continuous, person-centered support for older people in aged care.
  • Consider automatic penalties for facilities that do not meet minimum quantitative and qualitative staffing requirements.
  • Ensure adequate staffing to support older people.
  • Require training for all aged care facility staff in dementia support. Trainings should include how to recognize and analyze behaviors, verbal de-escalation techniques, tools to interact effectively with people with dementia, and side effects of medication.

For Ending Chemical Restraint:

  • Consider creating a new inspection survey protocol that can identify and document problems potentially arising from chemical restraint, for example, excessive sleeping, and problems around a lack of free and informed consent in accepting medications, and monitoring, proactively interviewing staff, residents, and residents’ families.
  • Ensure strong protections for whistleblowers to report chemical restraint.
  • Eliminate the permitted use of risperidone as a chemical restraint. 
  • Eliminate the use of PRN for drugs known to be used as chemical restraints.

To the Aged Care Quality and Safety Commission

  • Ensure complaints officers are empowered to investigate and address complaints of chemical restraint.
  • Ensure that inspections and monitoring assessors proactively and confidentially interview older people, residents’ families, and staff to identify indications of chemical restraint.
  • Publish data regarding chemical restraint findings, including numbers of allegations, investigations, and closed cases, facility names, and the amounts of fines or other penalties for this practice.

To the Council of Attorneys General

  • Establish legal support services for older people experiencing chemical restraint as a part of the National Plan to Respond to the Abuse of Older Australians, in coordination with existing state advocacy organizations.

To State and Territory Governments

  • Prohibit the use of chemical restraints as means of controlling the behavior of older people with dementia or for the convenience of staff. Ensure minimum staffing and adequate training in aged care facilities to support older people.

To the Coroner in Each State and Territory:

  • Review deaths that occur in nursing homes to assess whether use of chemical restraints may have contributed to the death.  Where appropriate, conduct inquiries or inquests into such deaths.    

Acknowledgements

This report was researched and written by Bethany Brown, researcher on older people’s rights in Human Rights Watch’s Disability Rights Division. Giorgi Gogia, associate director in the Europe and Central Asia Division; Jane Buchanan, deputy director in the Disability Rights Division; Elaine Pearson, Australia director at Human Rights Watch; Nicole Tooby, Australia coordinator at Human Rights Watch, and Laura Thomas, a former fellow at Human Rights Watch, provided research support.

The report was edited by Jane Buchanan, Elaine Pearson, and Joe Amon, a consultant on public health. Babatunde Olugboji, deputy program director, and James Ross, legal and policy director, provided programmatic and legal review respectively.

Cara Schulte, associate in the Disability Rights Division, provided research and production assistance. Layout and production were done by Cara Schulte; Jose Martinez, senior coordinator; Fitzroy Hepkins, production manager; and Remington Arthur, publications associate. Fortune Nyasha Nyamande, Mariam Matta, and Stephanie Mao, fellows and interns on older people’s rights, and Jinseul Jun, intern with the Disability Rights Division, provided additional research support. Lawyers acting on a pro bono basis helped us review pertinent domestic legislation.

This work would not have been possible without generosity and courage of so many individuals with family in facilities, people living in facilities, and their advocates, as well as facility staff. We are grateful to the many advocates, medical professionals, and scholars who shared their knowledge and experience with us.

This report would not be what it is without the support of ADA Australia’s team: Geoff Rowe, Karen Williams, and Jess Ma. Kaele Stokes and Sally Lambourne and their team at Dementia Australia supported this work throughout Victoria and New South Wales.

Human Rights Watch would also like to thank the many human rights organizations, activists, lawyers, and health professionals working in the field of older people’s rights and aged care who shared their insights and analyses with us or otherwise provided assistance.

Bill Mitchell of Townsville Legal Centre provided valuable legal background.

We would also like to thank ACT Disability and Aged Care Advocacy (ADACAS); Julie Reeves, the Australian Nursing and Midwifery Federation; Scott McDougall, formerly with Caxton Legal Centre and Cybele Koning, Caxton Legal Centre; Carmelle Peisah, Capacity Australia; Donna Swan, COTA Victoria; Kate Swaffer, Dementia Alliance International; Michael Gourlay, Pauline Meaney and Kate Dalton, Elder Rights Advocacy; Lise Barry, Macquarie University; Joe Ibrahim, Monash University; Amanda Alford, National Association of Community Legal Centres; Craig Gear, Older Persons Advocacy Network; Mary Burgess, Queensland Office of the Public Advocate; Natalie Siegel-Brown, Queensland Office of the Public Guardian; Margaret Duckett, Russell Westacott and Pat Joyce, Seniors Rights Service; Raylene Liddicoat, Simply Chronic Care; Andrew Byrnes, University of New South Wales; Terry Carney, University of Sydney; Juanita Breen, University of Tasmania; Nola Ries, Linda Steele, University of Technology Sydney; Lyn Phillipson, University of Wollongong; Lauren Adamson, John Chesterman, Victoria Office of the Public Advocate, and many others including those not identified by name to protect confidentiality.

Collier Charitable Fund generously supported this work. A special thank you to the Planet Wheeler Foundation for the financial support that made this research and report possible. Human Rights Watch would like to thank the Samuel Centre for Social Connectedness for its partnership throughout this research. Social connectedness is a guiding theme in Human Rights Watch’s work for older people’s human rights. We offer our deepest thanks to Kim Samuel for her unwavering belief in the power of social connectedness.

Annex

Glossary

Aged care facility is a residential facility in which a person resides, where they receive personal care or nursing care, or both, with appropriate staffing to meet residents’ nursing and personal care needs. These facilities also provide meals and cleaning services, furnishings, furniture, and equipment for residents.

Aged Care Quality and Safety Commission (ACQSC) began operations on January 1, 2019, as the primary government agency responsible for monitoring aged care in Australia. It replaced the Australian Aged Care Quality Agency and the Aged Care Complaints Commissioner. It accredits, monitors, assesses, and receives complaints regarding government-subsidized aged care services.

Australian Health Practitioners Regulation Agency (APHRA) is a governmental body supporting the national boards of health professions. It accepts complaints about practitioners’ behavior placing the public at risk or practicing their profession in an unsafe way.

Australian Department of Health develops and delivers policies and programs and advises the Australian government on health, aged care, and sport. It seeks to ensure better health for all Australians.

Chemical restraint is restraint that is, or that involves, the use of medication or a chemical substance for the purpose of influencing a person’s behavior other than medication prescribed for the treatment of, or to enable treatment of, a diagnosed mental health condition or intellectual disability, a physical illness, or a physical condition.

Commonwealth Ombudsman assesses complaints about the actions of Australian government agencies and private sector organizations it oversees, to consider if the actions were wrong, unjust, unlawful, discriminatory, or unfair.

Dementia is the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to such an extent that it interferes with a person's daily life and activities.

Informed Consent is a decision made with a full understanding of the purpose, risks, benefits, and alternatives to a medical intervention, in the absence of pressure or coercion.

Person-centered care is care focused on an individual’s unique qualities as a person. Such care builds and nurtures relationships between the individual and others.

Pharmacists and chemists are used interchangeably in Australia to refer generally to professionals trained and authorized to dispense medicines. However, formally, a pharmacist is qualified to prepare and dispense medicines, and a chemist is a broader term for an expert in chemistry. Chemist can also refer to a drugstore.

Power of attorney is a legal document in which one person nominates and gives legal authority to another to act on affairs on their behalf.

Quality Assessors conduct assessments in aged care facilities and have the authority to enter and search facilities. They work for the ACQSC (above) and are distinct from ACQSC complaints officers.

Risperidone is an antipsychotic medicine that is used to treat schizophrenia in adults and children who are at least 13 years old. In Australia, it is permitted for the treatment (up to 12 weeks) of psychotic symptoms, or persistent agitation or aggression unresponsive to non-pharmacological approaches in patients with moderate to severe dementia of the Alzheimer type. Risperidone is not approved by the Food and Drug Administration (FDA) in the United States for the treatment of behavior problems in older adults with dementia.

Royal Commission of Inquiry into Aged Care Quality and Safety was created by the Australian government in September 2018. It is holding hearings across the country and accepts submissions from the public to learn about aged care. It will conclude its activities in April 2020 with a final report making recommendations for improving aged care services. 

 

 

[1] Australian Institute of Health and Welfare, “Older Australia at a Glance,” https://www.aihw.gov.au/reports/older-people/older-australia-at-a-glance/contents/demographics-of-older-australians/australia-s-changing-age-and-gender-profile (accessed September 18, 2019).

[2] Australian Institute of Health and Welfare, Residential Aged Care Facility Identifying and Definitional Attributes, https://meteor.aihw.gov.au/content/index.phtml/itemId/384424 (accessed August 12, 2019).

[3] Quian, S., et al., “Nursing staff work patterns in a residential aged care home: a time-motion study,” Australian Health Review, November 2016, https://www.ncbi.nlm.nih.gov/pubmed/26615222 (accessed August 19, 2019). Enrolled nurses complete vocational studies of two years, while registered nurses complete theoretical studies of three years. See, The Difference Between a Registered Nurse and an Enrolled Nurse, https://www.myhealthcareer.com.au/nursing/the-difference-between-a-registered-nurse-and-an-enrolled-nurse-by-belynda-abbott/ (accessed September 18, 2019).

[4] Sarah Russell, Living Well in an Aged Care Home, 2017, https://apo.org.au/sites/default/files/resource-files/2017/10/apo-nid115961-1226316.pdf (Accessed September 20, 2019).

[5] Parliament of Australia, Advisory Report on the Aged Care Amendment (Staffing Ratio Disclosure) Bill 2018 , https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Ag... (accessed August 28, 2019).

[6] See Australian Nursing and Midwifery Federation, Ratios for Aged Care, http://anmf.org.au/campaign/entry/ratios-for-aged-care (accessed September 18, 2019); Queensland and Victoria have minimum nursing ratios for public hospitals. See, Ratios Now In Queensland, https://www.nswnma.asn.au/ratios-now-law-in-queensland/ (accessed September 18, 2019).

[7] Parliament of Australia, Future of Australia’s Aged Care Sector Workforce, 3.118, https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Communit... (accessed August 28, 2019).

[8] Aged care data snapshot—2018, Australian Institute of Health and Welfare GEN Aged Care Data, Fifth Release, October 19, 2018, https://gen-agedcaredata.gov.au/Resources/Access-data/2018/September/Age... (accessed August 14, 2019).

[9] Healthdirect, Dementia Statistics, https://www.healthdirect.gov.au/dementia-statistics (accessed August 28, 2019).

[10] Aged care data snapshot—2018, Australian Institute of Health and Welfare GEN Aged Care Data, Fifth Release, October 19, 2018, https://gen-agedcaredata.gov.au/Resources/Access-data/2018/September/Age... (accessed August 14, 2019).

[11] Hampson, Ralph, “Australia’s residential aged care facilities are getting bigger and less home-like,” The Conversation, September 23, 2018, https://theconversation.com/australias-residential-aged-care-facilities-... (accessed August 14, 2019).

[12] My Aged Care, “How Assessment Works,” May 14, 2018, https://www.myagedcare.gov.au/eligibility-and-assessment/how-assessment-...; Australian Department of Health, “Aged Care Subsidies and Supplements, New Rates of Daily Payments from 1 July 2019,” https://agedcare.health.gov.au/sites/default/files/documents/06_2019/age... (accessed August 14, 2019).

[13] This amount is calculated as 85 percent of the single basic Age Pension of AU$678.21 per fortnight. Grove, Alex, “Aged Care: a quick guide,” Parliament of Australia, June 5, 2019, https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parlia... (accessed August 16, 2019); My Aged Care, “Aged Care Home Costs and Fees,” https://www.myagedcare.gov.au/aged-care-home-costs-and-fees (accessed August 16, 2019).

[14] Grove, Alex, “Aged Care: A Quick Guide,” Parliament of Australia, https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/rp1819/Quick_Guides/AgedCare2019 (accessed August 2019).

[15] Australian government Aged Care Financing Authority, Sixth Report on the Funding and Financing of the Aged Care Sector 2018, https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/08_2018... (accessed August 7, 2019).

[16] Ibid.; Australian Department of Health, “Flexible Care,” https://agedcare.health.gov.au/programs/flexible-care (accessed August 14, 2019).

[17] Australian Productivity Commission, “About the Commission,” 2014, https://www.pc.gov.au/about (accessed August 14, 2019); and Productivity Commission, “Housing Decisions of Older Australians,” December 2015, https://www.pc.gov.au/research/completed/housing-decisions-older-austral... p. 3 (accessed August 7, 2019).

[18] Ibid., p. 5.

[19] Ibid.

[20] Ibid., p. 6.

[21] Ibid., p. 16.

[22] The Conversation, Explainer: What is a home care package and who is eligible? http://theconversation.com/explainer-what-is-a-home-care-package-and-who-is-eligible-112405 (accessed September 20, 2019).

[23] “Dementia statistics,” Alzheimer’s Disease International, https://www.alz.co.uk/research/statistics (accessed August 15, 2019).

[24] “Fact Sheets: Dementia,” World Health Organization, December 12, 2017, https://www.who.int/news-room/fact-sheets/detail/dementia (accessed August 15, 2019).

[25] Dementia Australia, “Key Facts and Statistics,” https://www.dementia.org.au/statistics (accessed August 11, 2019).

[26] United States Department of Health and Human Services, National Institute on Aging, “Basics of Alzheimer’s Disease and Dementia,” December 2017, https://www.nia.nih.gov/health/what-dementia-symptoms-types-and-diagnosis (accessed August 16, 2019).

[27] Ibid.

[28] Abhilash K. Desai and George T. Grossberg, “Recognition and Management of Behavioral Disturbances in Dementia,” Primary Care Companion Journal of Clinical Psychiatry, vol. 3(3) (2001), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC181170/ (accessed September 8, 2017).

[29] Joseph E. Gaugler et al., “Direct Care Worker Training to Respond to the Behavior of Individuals With Dementia: The CARES Dementia-Related Behavior Online Program,” Gerontology & Geriatric Medicine, vol. 2 (2016), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4755277/ (accessed September 8, 2017); Laura N. Gitlin et al., “Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview,” Journal of the American Medical Association (JAMA), vol. 308(19) (2012), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3711645/ (accessed September 8, 2017); Alice F. Bonner et al., “Rationales that Providers and Family Members Cited for the Use of Antipsychotic Medications in Nursing Home Residents with Dementia, Journal of the American Geriatrics Society, vol. 63(2) (2015), http://onlinelibrary.wiley.com/doi/10.1111/jgs.13230/full (accessed September 8 , 2017).

[30] Gitlin et al., “Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview,” JAMA, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3711645/ (accessed August 16, 2019).

[31] Jessop, Tiffany et al. “Halting Antipsychotic Use in Long-Term Care (HALT): A Single-Arm Longitudinal Study Aiming to Reduce Inappropriate Antipsychotic Use in Long-Term Care Residents with Behavioral and Psychological Symptoms of Dementia,” 29.8 (2017): 1391–1403; and Testad, et. al, “The value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review,” International Psychogeriatrics, Vol. 26, Issue 7 (July 2014),

https://www.cambridge.org/core/journals/international-psychogeriatrics/a... (accessed August 9, 2019).

[32] Sung, Huei‐Chuan et al., “A Group Music Intervention Using Percussion Instruments with Familiar Music to Reduce Anxiety and Agitation of Institutionalized Older Adults with Dementia,” International Journal of Geriatric Psychiatry 27.6 (2012): 621–627.; Blackburn, R., and Bradshaw, T., “Music Therapy for Service Users with Dementia: A Critical Review of the Literature,” Journal of Psychiatric and Mental Health Nursing 21.10 (2014): 879–888. https://www.ncbi.nlm.nih.gov/pubmed/25303405 (accessed August 16, 2019).

[33] Kevin R. Scott and Anna M. Barrett, “Dementia Syndromes: Evaluation and Treatment,” Expert Review of Neurotherapeutics, vol. 7(4) (2007), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536654/pdf/nihms43078.pdf (accessed September 8, 2017); Desai and Grossberg, “Recognition and Management of Behavioral Disturbances in Dementia,” Primary Care Companion Journal of Clinical Psychiatry, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC181170/.

[34] Li, Junxin, and Porock, Davina, “Resident Outcomes of Person-Centered Care in Long-Term Care: A Narrative Review of Interventional Research.” International Journal of Nursing Studies 51.10 (2014): 1395–1415, https://www.ncbi.nlm.nih.gov/pubmed/24815772 (accessed August 16, 2019); Terada, Seishi et al., “Person-Centered Care and Quality of Life of Patients with Dementia in Long-Term Care Facilities.” Psychiatry Research 205.1-2 (2013): 103–108, https://www.ncbi.nlm.nih.gov/pubmed/22974519 (accessed August 16, 2019); Buchanan, Jeffrey A. et al. “Non-Pharmacological Interventions for Aggression in Persons with Dementia: A Review of the Literature,” The Behavior Analyst Today 8.4 (2007): 413–425, https://psycnet.apa.org/fulltext/2008-05985-003.html (accessed August 16, 2019); Dimitriou, T-D et al. “Non-Pharmacological Interventions for Agitation/aggressive Behaviour in Patients with Dementia: a Randomized Controlled Crossover Trial.” Functional Neurology 33.3 (2018): 143–147, https://www.ncbi.nlm.nih.gov/pubmed/30457967 (accessed August 16, 2019).

[35] World Health Organization (WHO), “Strategies to end the use of seclusion restraint and other coercive practices,” WHO Quality Rights Guidance and Training Tools, WHO/MSD/MHP/17.9, http://who.int/mental_health/policy/quality_rights/guidance_training_too... (accessed August 8, 2019).

[36] Ibid.

[37] Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019, amendments to the Quality of Care Principles 2014.

[38] World Health Organization, Strategies to end the use of seclusion, restraint and other coercive practices, 2017 https://apps.who.int/iris/bitstream/handle/10665/254809/WHO-MSD-MHP-17.9... p. 16 (accessed September 30, 2019).

[39] In 2018, Human Rights Watch documented the use of antipsychotic drugs in older people in nursing facilities in the United States in the report “They Want Docile.” The US prohibits chemical restraint. https://www.hrw.org/report/2018/02/05/they-want-docile/how-nursing-homes... (accessed August 27, 2019).

[40] Nicola Gage, “Spriggs Family Searches for Answers after Father was Overmedicated at Oakden Mental Health Facility,” ABC News, January 18, 2017, https://www.abc.net.au/news/2017-01-18/sa-father-overmedicated-at-oakden... (accessed August 14, 2019).

[41] Carnell, K., Paterson, R., “Review of National Aged Care Quality Regulatory Processes,” Australian Government Department of Health, https://agedcare.health.gov.au/quality/review-of-national-aged-care-qual..., p. 50 (accessed August 8, 2019).

[42] Anne Connolly, “4 Corners: Who Cares?,” ABC, September 17, 2018 9:35 p.m. Australia,  https://www.abc.net.au/4corners/who-cares/10258290 (accessed August 7, 2019).

[43] As cited in Australian Senate Community Affairs References Committee, “Quality and Equity in Aged Care,” June 2005, https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Communit... P. 53 (accessed August 8, 2019).

[44] “Finding into Death without Inquest – Margaret Elizabeth Barton, Coroners Court of Victoria,” February 4, 2019, https://www.coronerscourt.vic.gov.au/sites/default/files/2019-02/Margare..., (accessed August 11, 2019).

[45] Australian Law Reform Commission, “Elder Abuse – A National Response,” 2017 https://www.alrc.gov.au/publications/elder-abuse-report p.251 (accessed August 8, 2019).

[46] Carnell and Patterson, Review of National Aged Care Quality Regulatory Processes of 2017, https://www.health.gov.au/sites/default/files/review-of-national-aged-ca..., p. 118 (accessed August 8, 2019).

[47] Review of National Aged Care Quality Regulatory Processes Report https://agedcare.health.gov.au/quality/review-of-national-aged-care-qual... p. 45 (accessed August 8, 2019).

[48] Office of the Public Advocate (Queensland), “Legal frameworks for the use of restrictive practices in residential aged care: An analysis of Australian and international jurisdictions, June 2017, https://agedcare.royalcommission.gov.au/publications/Documents/backgroun... (accessed August 20, 2019).

[49] Westbury, J.L., et al. “RedUSe: reducing antipsychotic and benzodiazepine prescribing in residential aged care facilities,” Medical Journal of Australia, May 14, 2018, https://www.mja.com.au/journal/2018/208/9/reduse-reducing-antipsychotic-..., (accessed August 7, 2019).

[50] Subject to the certain conditions, under the Pharmaceutical Benefits Scheme, pursuant to the National Health Act 1953.

[51] Westbury, J.L., et al., “RedUSe: reducing antipsychotic and benzodiazepine prescribing in residential aged care facilities.”

[52] Westbury, J.L., et al., “Psycholeptic use in aged care homes in Tasmania, Australia,” Journal of Clinical Pharmacy and Therapeutics, April 2010, https://www.ncbi.nlm.nih.gov/pubmed/20456737 (accessed August 7, 2019).

[53] See Australian Commission on Safety and Quality in Health Care, “Antipsychotic Medicines Dispensing 65 Years and Older,” 2015,  https://www.safetyandquality.gov.au/sites/default/files/migrated/SAQ201_... (accessed August 8, 2019); Hollingworth SA, et al., “Patterns of antipsychotic medication use in Australia 2002–2007,” https://www.ncbi.nlm.nih.gov/pubmed/20307170 (accessed August 8, 2019); Snowdon, J., et. al, “Patterns of psychotropic medication use in nursing homes: surveys in Sydney, allowing comparisons over time and between countries,” International Psychogeriatrics  (2011); and Hollingworth, S.A., et al., “Psychiatric drug prescribing in elderly Australians: time for action,” Australian and New Zealand Journal of Psychiatry  (2011).

[54] See, for example, LS Schneider et al., “Effectiveness of Atypical Antipsychotic Drugs in Patients with Alzheimer’s Disease,” New England Journal of Medicine, vol. 355(15) (2006), https://www.ncbi.nlm.nih.gov/pubmed/17035647 (accessed September 8, 2017); Philip S. Wang et al., “Risk of Death in Elderly Users of Conventional vs. Atypical Antipsychotic Medications,” New England Journal of Medicine, vol. 353 (2005), http://www.nejm.org/doi/full/10.1056/NEJMoa052827#t=article (accessed September 8, 2017); “Public Health Advisory: Deaths with Antipsychotics in Elderly Patients with Behavioral Disturbances,” US Food and Drug Administration, April 11, 2005, https://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforP... (accessed September 8, 2017); Office of Inspector General, “Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents,” https://oig.hhs.gov/oei/reports/oei-07-08-00150.pdf p. 3; “Information for Healthcare Professionals: Conventional Antipsychotics,” U.S. Food and Drug Administration, June 16, 2008, https://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforP... (accessed September 8, 2017).

[55] See US Food and Drug Administration, “Prescribing Information,” https://www.accessdata.fda.gov/drugsatfda_docs/label/2009/020272s056,020... (accessed August 16, 2019).

[56] Office of Inspector General, “Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents,” https://oig.hhs.gov/oei/reports/oei-07-08-00150.pdf (accessed August 16, 2019).

[57] Martin Steinberg and Constantine G. Lyketsos, “Atypical Antipsychotic Use in Patients with Dementia: Managing Safety Concerns,” American Journal of Psychiatry, vol. 169(9) (2012), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3516138/pdf/nihms421959.pdf (accessed October 10, 2017); American Psychiatric Association (APA), The American Psychiatric Association Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia, (Arlington, Virginia: APA, 2016), http://psychiatryonline.org/doi/pdf/10.1176/appi.books.9780890426807 (accessed September 8, 2017).

[58] “Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.” Juanita Westbury, “Chemical Restraint Has No Place in Aged Care, But Poorly Designed Reforms Can Easily Go Wrong,” The Conversation, February 26, 2019, http://theconversation.com/chemical-restraint-has-no-place-in-aged-care-... (accessed August 19, 2019).

[59] Australian government’s Department of Health Therapeutic Goods Administration, “Medicines Safety Update Volume 6 Number 4, August 2015,” August 2, 2015,

 https://www.tga.gov.au/publication-issue/medicines-safety-update-volume-... (accessed July 1, 2019); See chart of antipsychotics for older people with dementia in Australia.

[60] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 (see Annex I).

[61] Risperdal Product Information, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 15, 2019).

[62] “Olanzapine is not approved for the treatment of patients with dementia-related psychosis.” Olanzapine AN Product Information, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 15, 2019); “Quetiapine is not approved for the treatment of elderly patients with dementia-related psychosis or behavioural disorders,” Seroquel Product Information, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 15, 2019).

[63] Prescribing Information on the US Food and Drug Administration’s website: “[Risperidone] is not approved for use in patients with dementia-related psychosis.” https://www.accessdata.fda.gov/drugsatfda_docs/label/2009/020272s056,020... (accessed August 27, 2019).

[64] Amneal Pharma Australia Pty Ltd, Olanzapine AN Product Information, “In placebo-controlled clinical trials of elderly patients with dementia-related psychosis, the incidence of death in olanzapine-treated patients was significantly greater than placebo-treated patients (3.5% vs 1.5%) respectively. Risk factors that may predispose this patient population to increased mortality when treated with olanzapine include age >80 years, sedation, concomitant use of benzodiazepines, or presence of pulmonary conditions (e.g. pneumonia, with or without aspiration).” Found on the website of the Australian government’s Department of Health Therapeutic Goods Administration, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 30, 2019).

[65] Ibid., Olanzapine AN Product Information, “Olanzapine is not approved for the treatment of patients with dementia-related psychosis.”

[66] Janssen, Risperdal, Risperdal Oral Solution Product Information, “Elderly patients with dementia treated with atypical antipsychotic medicines have an increased mortality compared to placebo in a meta-analysis of 17 controlled trials of atypical antipsychotic drugs, including RISPERDAL. In placebo-controlled trials with RISPERDAL in this population, the incidence of mortality was 4.0% (40/1009) for RISPERDAL treated patients and 3.1% (22/712) for placebo treated patients. The mean age (range) of patients who died was 86 years (range 67-100).” Found on the website of the Australian government’s Department of Health Therapeutic Goods Administration, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 30, 2019).

[67] Australian government’s Department of Health Therapeutic Goods Administration, “Medicines Safety Update Volume 6 Number 4, August 2015,” August 2, 2015,

 https://www.tga.gov.au/publication-issue/medicines-safety-update-volume-... (accessed July 1, 2019).

[68] AstraZeneca, Seroquel Product Information, “A meta-analysis of seventeen placebo controlled trials with dementia related behavioural disorders showed a risk of death in the drug-treated patients of approximately 1.6 to 1.7 times that seen in placebo-treated patients. The clinical trials included in the meta-analysis were undertaken with olanzapine, aripiprazole, risperidone and quetiapine.” Found on the website of the Australian government’s Department of Health Therapeutic Goods Administration, https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&i... (accessed August 30, 2019).

[69] Ibid., “Quetiapine is not approved for the treatment of elderly patients with dementia-related psychosis or behavioural disorders.”

[70] Australian government’s Department of Health Therapeutic Goods Administration, “Medicines Safety Update Volume 6 Number 4, August 2015,” August 2, 2015,

 https://www.tga.gov.au/publication-issue/medicines-safety-update-volume-... (accessed July 1, 2019); See chart relating Australian government approvals of antipsychotics for older people with dementia.

[71] CRPD Committee, General Comment No. 1, para. 41, citing CRPD arts. 15-17.

[72] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[73] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[74] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[75] Human Rights Watch interview with [name withheld], Queensland, March 17, 2019.

[76] Human Rights Watch interview with [name withheld], Southern Queensland, March 17, 2019.

[77] Human Rights Watch video conference interview with Raylene Liddicoat, June 3, 2019.

[78] Human Rights Watch interview with Michal Browne, Southern Queensland, March 18, 2019.

[79] Human Rights Watch interview with Michal Browne, Southern Queensland, March 18, 2019.

[80] Human Rights Watch interview with [name withheld], Northern Queensland, March 19, 2019.

[81] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[82] Human Rights Watch telephone interview with Dr. Harry McConnell, July 5, 2019.

[83] Human Rights Watch interview with Denise Fenech, Queensland, March 22, 2019.

[84] Human Rights Watch video conference interview with Raylene Liddicoat, June 3, 2019.

[85]“Akthasia,” Lexico Dictionary, https://www.lexico.com/en/definition/akathisia (accessed August 19, 2019).

[86] Human Rights Watch telephone interview with Deanne Morris, January 23, 2019;  Report into the medication management of Pamela Passlow by Dr Juanita Breen, July 2, 2019, on file with Human Rights Watch.

[87] Human Rights Watch telephone interview with Dr. Harry McConnell, July 5, 2019.

[88] Human Rights Watch video conference interview with Raylene Liddicoat, June 3, 2019.

[89] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[90] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[91] Human Rights Watch video conference interview with Dr. Harry McConnell, July 5, 2019.

[92] Human Rights Watch telephone interview with Juanita Breen (Westbury), January 23, 2019.

[93] Human Rights Watch interview with [name withheld], Southern Queensland, March 17, 2019.

[94] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[95] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[96] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[97] Human Rights Watch interview with facility manager, Queensland, July 19, 2019.

[98] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[99] Australian Law Reform Commission, “Review of State and Territory Legislation: Informed Consent to Medical Treatment,” 2017) https://www.alrc.gov.au/publications/10-review-state-and-territory-legis... (accessed August 17, 2019); it further notes that “Any new approach to informed consent would need to be reflected in guidance such as the Australian Charter of Rights in Healthcare, the National Safety and Quality Health Service Standards, the National Framework on Advance Care Directives, publications on communication with patients and the national codes of conduct of health practitioners.”

[100] COAG Health Council, A National Code of Conduct for Health Care Workers, 2015, https://www.aasw.asn.au/document/item/735.

[101] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019, p.3 (see Annex I).

Inquiry into Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019, https://www.aph.gov.au/~/media/Committees/Senate/committee/humanrights_ctte/activity/Quality%20of%20Care/Health%20department%20answers%20to%20QoN.pdf?la=en (accessed September 23, 2019).

[102] Ibid.

[103] Aged Care (Single Quality Framework) Reform Act 2019, Federal Register of Legislation, March 25, 2019. https://www.legislation.gov.au/Details/C2018A00102.

[104] Aged Care Quality and Safety Commission, Guidance and Resources for Providers to support the Aged Care Quality Standards, Standard 1(3)(c), https://agedcarequality.govcms.gov.au/sites/default/files/media/Guidance%20and%20resources%20for%20providers%20to%20support%20the%20Aged%20Care%20Quality%20Standards%20v3.pdf p. 17. (accessed 9/23/2019).

[105] Ibid., p. 19.

[106] See Section V on International Standards, below.

[107] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[108] Human Rights Watch interview with [name withheld], Northern Queensland, March 19, 2019.

[109] Human Rights Watch telephone interview with Susan Ryan, New South Wales, June 24, 2019.

[110] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[111] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[112] Human Rights Watch interview with Silvio Proy, Victoria, March 25, 2019.

[113] Human Rights Watch interview with Edgard Proy, Victoria, March 25, 2019.

[114] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[115] Human Rights Watch telephone interview with Susan Ryan, New South Wales, June 24, 2019.

[116] Human Rights Watch telephone interview with Susan Ryan, New South Wales, June 24, 2019.

[117] Human Rights Watch video call interview with [name withheld], July 13, 2019.

[118] Human Rights Watch interview with [name withheld], Southern Queensland, March 17, 2019.

[119] About Us, Australian Government Aged Care Quality and Safety Commission, April 12, 2019, https://www.agedcarequality.gov.au/about-us; Aged Care Quality and Safety Commission Rules 2018. Federal Register of Legislation, 2018, https://www.legislation.gov.au/Series/F2018L01837; Aged Care Legislation Amendment (Single Quality Framework Consequential Amendments and Transitional Provisions) Instrument 2019, Federal Register of Legislation, March 25, 2019. https://www.legislation.gov.au/Details/F2019L00515.

[120] About Us. Australian Government Aged Care Quality and Safety Commission. 12 April 2019. https://www.agedcarequality.gov.au/about-us.

[121] About Us. Australian Government Aged Care Quality and Safety Commission. 12 April 2019. https://www.agedcarequality.gov.au/about-us.

[122] The Complaints Process. Australian Government Aged Care Quality and Safety Commission. January 24, 2019. https://www.agedcarequality.gov.au/making-complaint/complaints-process (accessed August 16, 2019).

[123] Resolving concerns about aged care, Australian Government Aged Care Quality and Safety Commission, https://www.agedcarequality.gov.au/sites/default/files/media/acqsc_resol... (accessed August 16, 2019).

[124] Ibid.

[125] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 6 (see Annex I).

[126] Australian Health Practitioner Regulation Agency, “Other Health Complaints Organizations,” April 2019, https://www.ahpra.gov.au/notifications/further-information/health-compla... (accessed August 14, 2019). Referrals to Other Organizations. Australian Government Aged Care Quality and Safety Commission, December 21, 2018. https://www.agedcarequality.gov.au/making-complaint/referrals-other-orga... (accessed August 14, 2019).

[127] See, for example Queensland Courts, Coroners Court, https://www.courts.qld.gov.au/courts/coroners-court (accessed October 2, 2019).

[128] For example, in Queensland and Victoria the conduct must be “unprofessional conduct,” “unsatisfactory professional performance” or “professional misconduct.” Health Practitioner Regulation National Law (Qld), sec. 5; Health Practitioner Regulation National Law (Vic) sec. 5; in New South Wales, the conduct must be “unsatisfactory professional conduct” or “professional misconduct” Health Practitioner Regulation National Law (NSW), sec. 139B and 139E.    

[129] Aged Care Complaints Commissioner, Annual Report 2017-2018, https://www.agedcarequality.gov.au/sites/default/files/media/aged_care_c... (accessed August 14, 2019).

[130] Resolving concerns about aged care, Australian Government Aged Care Quality and Safety Commission.

[131] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 2 (see Annex I).

[132] Right to seek review of complaint decision or Commission’s process factsheet, Australian Government Aged Care Quality and Safety Commission, December 31, 2018, https://www.agedcarequality.gov.au/resources/right-seek-review-complaint....

[133] Human Rights Watch interview with [name withheld], Queensland, March 17, 2019.

[134] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[135] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[136] Email provided to Human Rights Watch from [name withheld], dated November 7, 2017.

[137] Human Rights Watch interview with [name withheld], Southern Queensland, March 21, 2019.

[138] Human Rights Watch interview with Mark Viney, Southern Queensland, March 18, 2019.

[139] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[140] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[141] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[142] Human Rights Watch interview with [name withheld], Victoria, March 25, 2019.

[143] Human Rights Watch interview with Julie McAdams, Victoria, March 24, 2019.

[144] Human Rights Watch correspondence with Julie McAdams, August 5, 2019.

[145] Human Rights Watch interview with [name withheld], Victoria, March 27, 2019.

[146] Council of Attorneys General, National Plan to Respond to the Abuse of Older Australians (Elder Abuse) 2019-2023 https://www.ag.gov.au/RightsAndProtections/protecting-the-rights-of-older-australians/Documents/National-plan-to-respond-to-the-abuse-of-older-australians-elder.pdf, p. 3 (accessed September 20, 2019).

[147] Prime Minister’s Media Release, “Royal Commission of Inquiry into Aged Care Quality and Safety,” September 16, 2018, https://www.pm.gov.au/media/royal-commission-aged-care-quality-and-safety (accessed August 7, 2019).

[148] Royal Commission into Aged Care Quality and Safety, Terms of Reference, https://agedcare.royalcommission.gov.au/Pages/Terms-of-reference.aspx (accessed August 14, 2019).

[149] Julie Power, “Staff Ignored Requests for Heart Medicine, Aged-Care Commission Hears,” The Sydney Morning Herald, May 6, 2019, https://www.smh.com.au/national/staff-ignored-requests-for-heart-medicin... (accessed August 14, 2019).

[150] See, Royal Commission into Aged Care Quality and Safety, Publications, https://agedcare.royalcommission.gov.au/publications/Pages/default.aspx  (accessed August 12, 2019).

[151] Aged Care Quality and Safety Commission, Guidance Resources for Providers to Support Aged Care Quality Standards, https://www.agedcarequality.gov.au/sites/default/files/media/Guidance%20... p. 62 (accessed August 28, 2019).

[152] Aged Care Quality and Safety Commission, Guidance Resources for Providers to Support Aged Care Quality Standards p. 63.

[153] Ibid. “Organisations providing clinical care are expected to make sure it is best practice” p. 188; “the organisation should have systems to manage how restraints are used.” p. 184.

[154] Department of Health, Aged Care Quality Standards, https://agedcare.health.gov.au/ensuring-quality/quality-indicators-for-a... (accessed August 8, 2019).

[155] Australia Department of Health, Aged Care Quality Standards.

[156] Ibid.

[157] “Ramping Up Inspections Not Enough to Improve Aged Care Experts Warn,” The Guardian, January 3, 2019, https://www.theguardian.com/australia-news/2019/jan/04/ramping-up-nursin... (accessed August 8, 2019).

[158] ACQSC, “Sector Performance Data,” https://www.agedcarequality.gov.au/sector-performance (accessed August 16, 2019).

[159] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p.1 (see Annex I).

[160] Parliamentary Joint Committee on Human Rights Hearing August 20, 2019, https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/QualityCareAmendment/Public_Hearings (accessed September 20, 2019).

[161] Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019, amendments to the Quality of Care Principles 2014. Protections regarding physical restraint include a health practitioner’s assessment; exhaustion of and documentation of alternatives; that physical restraint is the least restrictive choice; and informed consent of the person involved or their representative, unless necessary in an emergency. Quality of Care Principles 2014 (Cth), sec. 15F(1).

[162] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 3 (see Annex I).

[163] See Parliamentary Joint Committee on Human Rights Hearing August 20, 2019, “Inquiry Into Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019,” https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/QualityCareAmendment/Public_Hearings (accessed September 20, 2019).

[164] Ibid.

[165] See Parliamentary Joint Committee on Human Rights, “Inquiry Into Quality of Care Amendment (Minimising the Use of Restraints) Principles 2019,” https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/QualityCareAmendment/Public_Hearings  (accessed August 12, 2019).

[166] Letter from David Hallinan, A/G deputy secretary, ageing and aged care, general manager, policy and advocacy, Australian government Department of Health, to Human Rights Watch, October 7, 2019 p. 1. See Annex I.

[167] Ibid., p. 3.

[168] Letter from Tim Hicks, general manager, policy and advocacy, Leading Age Services Australia, to Human Rights Watch, July 3, 2019. See Annex V.

[169] Aged Care Act 1997, Federal Register of Legislation, C2019C00199, Chapter 4.1 Division 54-1(b).

[170] See UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), August 11, 2000, E/C.12/2000/4, available at: https://www.refworld.org/docid/4538838d0.html  (accessed September 28, 2019), para. 129d).

[171] Letter to Prime Minister Scott Morrison, dated December 15, 2018, http://anmf.org.au/images/uploads/Joint_Letter_To_ScottMorrison.jpg (accessed September 19, 2019).

[172] John R. Bowblis, “Staffing Ratios and Quality: An Analysis of Minimum Direct Care Staffing Requirements for Nursing Homes,” Health Research Services Research, vol. 46(5) (2011), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3207189/pdf/hesr0046-1495.pdf (accessed September 10, 2017); NB Lerner et al., “Are Nursing Home Survey Deficiencies Higher in Facilities with Greater Staff Turnover,” Journal of the American Medical Directors Association, vol. 15(2) (2014), https://www.ncbi.nlm.nih.gov/pubmed/24139163 (accessed September 10, 2017); HY Lee et al., “The Effects of RN Staffing Hours on Nursing Home Quality: A two-stage model,” International Journal of Nursing Studies, vol. 51(3) (2014), https://www.ncbi.nlm.nih.gov/pubmed/24182619 (accessed September 10, 2017).

[173] Human Rights Watch telephone interview with Elsa, July 13, 2019.

[174] Human Rights Watch telephone interview with [name withheld], Queensland, March 22, 2019.

[175] Human Rights Watch interview with Veronica, New South Wales [exact location withheld], July 17, 2019.

[176] Australian Nursing and Midwifery Federation, “National Aged Care Survey 2019,” http://anmf.org.au/documents/reports/ANMF_Aged_Care_Survey_Report_2019.pdf (accessed August 7, 2019).

[177] Human Rights Watch interview with [name withheld], Northern Queensland, March 19, 2019.

[178] Human Rights Watch interview with Kate, New South Wales [exact location withheld], July 17, 2019.

[179] Human Rights Watch interview with Juanita Breen (formerly Westbury), January 23, 2019.

[180] Gozalo, Pedro et al., “Effect of the Bathing Without a Battle Training Intervention on Bathing‐Associated Physical and Verbal Outcomes in Nursing Home Residents with Dementia: A Randomized Crossover Diffusion Study,” Journal of the American Geriatrics Society 62.5 (2014): 797–804. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584541/ (accessed August 16, 2019).

[181] Letter from Pat Sparrow, chief executive officer, Aged and Community Care Services, to Human Rights Watch, July 7, 2019. See Annex IV.

[182] International Covenant on Civil and Political Rights, adopted December 16, 1996, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc A/6316 (1966), art. 7; Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, adopted December 10, 1984, G.A. Res. 39/46, Annex 39, U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/810 at 71 (1948), art. 37; Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, U.N. GAOR, 61st Sess., Supp. (No. 49) at 65, U.N. Doc. A/61/49 (2006), art. 15.

[183] CRPD, art. 1.

[184] Committee on the Rights of Persons with Disabilities, Concluding observations on the initial report of Australia, adopted by the Committee at its tenth session (2-13 September 2013), U.N. Doc CRPD/C/AUS/CO/1, para. 35.

[185] Ibid., para. 36.

[186] UN Human Rights Council, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, A/HRC/22/53, February 1, 2013, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf , para. 28.

[187] Ibid., para. 32.

[188] Ibid., para. 22.

[189] Ibid., para. 32.

[190] Ibid.

[191] Ibid., para 63.

[192] International Covenant on Economic, Social and Cultural Rights, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), art. 12; CRPD, art. 25. 

[193] UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12 of the Covenant), August 11, 2000, E/C.12/2000/4, available at: https://www.refworld.org/docid/4538838d0.html  (accessed September 28, 2019), para. 43.

[194] Ibid., para. 49.

[195] See CRPD, art. 25 (“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” Article 25(d) further specifies that states shall: “[r]equire health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent” [emphasis added].).

[196] CRPD Committee, General Comment No. 1, para. 41, citing CRPD arts. 14 and 25.

[197] Ibid., para. 42, citing CRPD arts. 15-17.

[198] CRPD Committee, General Comment No. 1, para. 21.

[199] UN Human Rights Council, Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Dainius Puras, A/HRC/35/21, March 28, 2017, https://documents-dds-ny.un.org/doc/UNDOC/GEN/G17/076/04/PDF/G1707604.pd... (accessed September 10, 2017), para. 63.

[200] UN General Assembly, Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272, August 10, 2009, http://www.refworld.org/docid/4aa762e30.html (accessed September 10, 2017), para. 9; UN Human Rights Council, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, February 1, 2013, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session..., para. 28.

[201] UN Human Rights Council, Report of the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, February 1, 2013, http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session..., para. 28.

[202] UN Human Rights Council, Report of the special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, Dainius Puras, March 28, 2017, https://reliefweb.int/sites/reliefweb.int/files/resources/G1707604.pdf, para. 65.

[203] Ibid.

[204] Joint Parliamentary Human Rights Committee, Human Rights Scrutiny Report 13 of 2018, December 4, 2018

https://www.aph.gov.au/~/media/Committees/Senate/committee/humanrights_c... para 2.134 (accessed August 29, 2019).

[205] Joint Parliamentary Human Rights Committee, Human Rights Scrutiny Report 9 of 2018, 11 September 2018, https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Human_Rights/Scrutiny_reports/2018/Report_9_of_2018, paras 1.36 and 1.41 (accessed August 29, 2019).

[206] Guardianship Regulations 2016 (NSW).

[207] Ibid. secs. 9, 45.

[208] Office of the Public Advocate, “Legal frameworks for the use of restrictive practices in residential aged care: An analysis of Australian and international jurisdictions,” June 2017, (see https://www.justice.qld.gov.au/__data/assets/pdf_file/0005/524426/restri...) (accessed September 19, 2019).

[209] Royal Commission into Aged Care Quality and Safety, Restrictive Practices in Residential Aged Care in Australia, Background Paper 4, May 2019, https://agedcare.royalcommission.gov.au/publications/Documents/backgroun..., p. 1; Office of the Public Advocate (Queensland), Legal frameworks for the use of restrictive practices in residential aged care: An analysis of Australian and international jurisdictions, June 2017, https://www.justice.qld.gov.au/__data/assets/pdf_file/0005/524426/restrictive-practices-in-aged-care-final.pdf,

pp. 6-7; Secretary, Department of Health and Community Services v J.W.B. and S.M.B. (Marion’s Case) (1992) 175 CLR 218.

[210] See, for example, Equal Opportunity Act 2010 (Vic), sec. 6(a), 7-9, 44 and 53; Anti-Discrimination Act 1977 (NSW), sec. 49ZYA, 49ZYN and 49ZYO; Anti-Discrimination Act 1991 (Qld), sec. 7(f), 8-11, 46 and 83 and  Equal Opportunity Act 2010 (Vic), sec. 6(e), 7-9, 44-45 and 53; Anti-Discrimination Act 1977 (NSW), sec. 49A-49C, 49M and 49N; Anti-Discrimination Act 1991 (Qld), sec. 7(h), 8-11, 46 and 83. 

[211] Age Discrimination Act 2004 (Cth), secs. 28 and 29.  

[212] Ibid., sec. 14.

[213] Ibid., sec. 15.

[214] Disability Discrimination Act 1992 (Cth), sec. 4; ibid., secs. 24 and 25. 

[215] Ibid., sec. 5.

[216] Ibid., sec. 6.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Image for HRW Film Festival, Nairobi 2019’s Opening Night Film Everything Must Fall by Rehad Desai © Daylin Paul

For the first time, people who are deaf or hard of hearing will be able to enjoy the Nairobi leg of the Human Rights Watch Film Festival, opening on October 15.

Rehad Desai’s documentary Everything Must Fall, a deep-dive into South Africa’s student activist movement, will open the festival. The film will have open captions, meaning written dialog and descriptions of sound effects will appear onscreen. The screening venue, Alliance Française de Nairobi, is wheelchair accessible, and there will be a sign language interpreter for the panel discussion following the screening.

The four additional films screening at the film festival, which ends October 18, are also fully subtitled.

Additionally, all screenings and panels are free to everyone.

The Human Rights Watch Film Festival currently screens in approximately 20 cities worldwide and features important films that discuss a range of human rights issues. The goal is always to reach as wide an audience as possible; however, making a film accessible for people with disabilities requires a commitment from the film industry. Costs can add up for independent filmmakers and production companies to budget for subtitles, open captions, or closed captions, which appear on personal devices instead of onscreen. Audio description, which describes what is onscreen via personal headset for people who are blind or visually impaired, is particularly costly. To use many of these features, the screening venues must provide closed-captioning glasses or personal screens, and audio-description headsets or assisted-listening devices.

We are exploring additional accessibility options in our other cities too. For example, Barbican Cinema, our partner venue for the London Human Rights Watch Film Festival, is offering ‘relaxed screenings’ for their films, where making noise or moving about during the movie is the norm. This can work well for people who have autism or who experience anxiety.

Outreach to people with disabilities is essential, both to raise awareness about accessibility at the festival and to encourage the film industry to invest in accessibility features. As our experience with Nairobi’s Opening Night film, Everything Must Fall, demonstrates, real change requires taking a wide variety of perspectives into account. For the Human Rights Watch Film Festival, increased accessibility efforts will help to ensure that even more people can engage with human rights conversations through film.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

 

After 15 years in and out of psychiatric care, Maya knows Belgium’s mental health system well. A striking young woman with enormous, sad eyes, Maya speaks in a heavy voice as if physically weighed down by worry.

At psychiatry’s heart, she says, is the constant threat of force. Not only physical coercion, but something more subtle. 

A photograph Maya took of an isolation room she was once held in. “I took this picture because I want people to know what happens behind the walls of psychiatric institutions,” Maya said. © 2019 Maya for Human Rights Watch

 

“It’s accepting to take a sedative pill to avoid a forced injection,” said Maya, a student in her late 20s who struggles with suicidal thoughts and episodes of self-harm. “It’s accepting to be tied to the bed knowing that if you walk out, they will call the police. You have to abide by their rules and play their game. The psychiatric system is overwhelmingly oppressive.” 

Like many people with mental health conditions, Maya (not her real name) has spent years bouncing between psychiatrists, hospitals, clinics, and various medications. Her experience had been highly negative and did little to help her cope with day-to-day life. 

Yet that all changed after an encounter in Brussels with the mobile team at TANDEMplus, which supports people with mental health conditions without diagnosis, hospitalization, or medication. The only “treatment” TANDEMplus offers is support, in the form of regular home visits to talk through people’s emotions and concerns. They help the person find coping strategies and tackle practical problems that have brought them to the point of crisis, be it a debt issue, help with household bills, or mending ties with family members. They also refer them to social workers or other services. 

TANDEMplus worker Céline Godart. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

The support is only given with the person’s full consent, reflecting TANDEMplus’ core philosophy: that the person has control over their own life. This model is unlike other outreach programs in Belgium and could be a model for European countries looking to support people with psychosocial disabilities in a way that respects their human rights.

After a friend referred Maya to TANDEMplus, an outreach worker named Céline visited her at home. Maya spoke about how she was feeling, honestly and openly, and says the result was eye-opening.

“With Céline, it was the first time I experienced such an equal relationship with a professional,” Maya said. “She has no power on me. She’s my ally in my battle.”

TANDEMplus is not like many other mental health outreach programs, which are often linked to hospitals. These often simply export what hospitals do – with an emphasis on medication and treatment – outside the hospital’s walls. Instead, TANDEMplus gives practical support to help people with mental health conditions manage daily life.

TANDEMPlus workers

▪ Staff initially work in pairs

▪ Short-term contact

▪ Staff are trained on the job

People can contact TANDEMplus directly or be referred by a friend, relative, or family doctor, who call a hotline staffed during office hours. Workers are then dispatched in pairs to make a home visit, usually within 24 to 48 hours of the initial call. They meet the person who wants help, and together they devise a plan to help make life feel manageable again.

TANDEMplus currently has a team of five outreach workers. Staff don’t need to be medically qualified, although most previously worked as health professionals or care workers. Experience, personality, and their ability to form a relationship are more important than any other qualification. The aim is to get people with mental health conditions back on their feet, while at the same time keeping them out of hospital. 

“We Don’t See A Schizophrenic. We See A Person. It’s A Very Big Difference.” Philippe Hennaux

TANDEMplus co-founder Philippe Hennaux. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Philippe Hennaux is a psychiatrist in his mid 50s who helped co-found TANDEMplus four years ago. He’s larger than life and bursts with energy and ideas. Decades of observing people bounce in and out of hospital inform his belief that the traditional psychiatric care model is flawed. 

“Psychiatric patients are one of the last groups whose rights are not respected,” said Hennaux. “This is because people are afraid of them and what they might do.”

He believes psychiatry should first and foremost be based on human rights – particularly the rights to autonomy, dignity, and informed consent. Instead, psychiatry often wavers between helplessness and force, he says. “Either they do nothing and say ‘I can’t do anything for your daughter.’ Or they say ‘I’m coming with my big muscles and my syringes.’”

TANDEMplus philosophy

▪ People, not patients

▪ No force. No diagnosis. No fee

▪ Full consent

TANDEMplus works in the area between these two extremes. 

There are only two rules,” Hennaux said. “We don’t abandon someone, and we don’t force someone. When people call us, they’re a citizen. Not a sick person, not a patient, not a user, not a client.”

TANDEMplus puts control in the hands of the person. It aims to avoid hospitalization, and does not hospitalize people against their will. Staff don’t deal with medication. The service is entirely free and doesn’t depend on the person having medical insurance. As a result, staff don’t need to ask for the person’s ID card before meeting them, or even register their name. The ability to remain anonymous is another way to let the person maintain control. 

“When People Go Back Home, It Starts All Over Again.” Céline Godart

TANDEMplus worker Céline Godart gets about Brussels by bicycle. © 2019 Stephanie Hancock for Human Rights Watch

Céline Godart has worked at TANDEMplus for three years. She has a calm manner and a soft, friendly face framed by round tortoise-shell glasses that reinforce a sense of earnestness. She used to work with teenagers in psychiatric hospitals but left because it was hard to make progress with patients in an institutional setting.

“In hospital you’re a bit stuck,” she said. “You see a person every day but don’t see them in their own living space. The environment is very important.” 

During a hospital stay ordinary life is on hold, and for many people when they go home, life can feel unmanageable. Godart says often it’s the small things in life that quickly become overwhelming, and that’s what she tries to fix. The aim is not to treat a person, but to be their partner instead.

A general street scene in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch (NB: No-one associated with TANDEMplus is depicted in this photograph)

“Small details create big mountains,” she said. Sometimes it can be as simple as someone not having changed their address, which means they don’t receive their bills to pay them on time. And this lands them in trouble with court bailiffs. 

“You get to their house and find there are thousands of Euros of debt for a small 10 Euro bill for a hospital blood test.  So when we arrive, we say ‘OK, first let's change your address, so that it doesn't start again.’ It's often small things that help us get going.”

The relationship, and much-needed trust, can develop fast.

“I quickly feel very close to the person,” Godart said. “We go to their house, meet their family, their children recognize us. Our work is to lay a foundation around the person that’s sufficiently solid for them to continue making progress psychologically.”

“In Hospital, You Don’t Get Better. In Bed, Nothing Changes.” Patrick Janssens

TANDEMplus co-founder, psychologist Patrick Janssens. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Patrick Janssens cuts an unassuming figure at TANDEMplus headquarters. He’s an attentive listener and speaks so softly you often have to strain to hear. These qualities might well explain his success in a world where people often feel that no one truly understands them.

“The problem with psychiatry is that people hope that if you receive medication you will be cured,” said Janssens, a psychologist and the program’s co-founder. “This is not, or rarely, the case.”

How TANDEMplus Works
 

A eureka moment for him came with the realization that most people they visit have already been treated in a hospital.

Sixty-one percent of people they see have previously been in long-term residential psychiatric hospital care, sometimes multiple times. And 78 percent of them already have a family doctor, or a psychiatrist, or both. The fact that people contact TANDEMplus even though they are receiving medical care suggests that the treatment they receive is not meeting their needs. 

Staff meeting at TANDEMplus offices in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

For people whose main experience of mental health treatment has been inside a psychiatric hospital, being supported at home can be a revelation. 

“No one gets better in bed,” Janssens said. “You get better when you’re in contact [with people], when you feel useful, or when you discover you’ve found your place.” 

In 78 percent of the cases where its staff are able to successfully establish regular contact, TANDEMplus helps people avoid going into the hospital, usually with a combination of psychosocial support or practical help on their own terms, but also by re-establishing people’s social support networks. These links to family and community, which provide a person’s sense of purpose and belonging in the world, are seen as key.

“If I See You Guys, I Calm Down a Lot.” Zaher Amiri

Zaher Amiri, an asylum seeker who struggles with depression. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Richard Boland is an experienced member of the TANDEMplus team. He’s worked a lot with refugees in the past, and can use this to his advantage. He’s been supporting Zaher Amiri, an asylum seeker from Afghanistan, for several weeks. Amiri was forced to leave his wife and two sons in an unsafe area under Taliban control, and he has spent years trying to meet the requirements to bring his family to join him in Belgium. To relieve stress, he cuts himself. He often feels suicidal.

TANDEMplus worker Richard Boland talking to Zaher Amiri in Amiri’s apartment. Amiri is an asylum seeker who struggles with depression. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

“His case is very complicated,” Boland said. “I got him a good lawyer, and we tried to straighten out his asylum procedure.” 

After weeks of regular visits, Amiri says he thinks of Boland as a friend now. “If I see you guys, I calm down a lot,” Amiri tells Boland as the pair chat over a flask of mint tea in his modest first-floor apartment, surrounded by the objects that now define his life: open packets of medication, piles of paperwork, a phone he uses to video call his sons. “You come, make appointments with lawyers, and accompany me to the doctor. That is very good for me.”

 

“When They Came, I Was In Crisis.” Florence

Street scene in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Florence has long blond hair and is wearing dark sunglasses when we meet at an outdoor cafe. They lend her a film star kind of look. But her sunglasses do not hide the tears streaming down her cheeks. Florence (not her real name) cries throughout our interview, even though she remains strikingly calm and composed throughout.

“When they came, I was in crisis,” said Florence, a 47-year-old mother and grandmother who survived a traumatic sexual assault and whose anxiety was so overwhelming she could no longer leave her house. “I was curled up in a ball at home. I weighed no more than 49 kilos.

“My family doctor suggested I see the mobile team. They came in a pair. They treated me with kindness, not pity. They helped me to verbalize certain things. They put in place follow-up appointments with a new psychologist. When you’ve been mistreated so much [by doctors], you forget how to trust. With them, I trusted them straight away.” 

“It's Not Our Ambition to Show That Hospitals Don't Work. But It's What We See.” Patrick Janssens

TANDEMplus worker Steven van der Auwera meets a woman at her home. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Despite the growing trend for mobile health teams, levels of forced hospitalization are high in Belgium. The country has one of the highest number of psychiatric beds per capita in the European Union – an average of 136 beds per 100,000 people, versus a European average of 69.

And the cost to the public is high. Thirty days in a psychiatric hospital costs €4,718 (US$ 5,179) while the same stay in a psychiatric ward of a general hospital costs €10,339 (US$ 11,349). But community-based care is far more cost-effective.

Mobile teams are a cheaper way to provide support to people in acute crises, and can support far more people than hospitals do with the same resources. And, as TANDEMplus’ own data shows, not only are hospitals more expensive, they are also not always effective.

TANDEMplus worker Steven Van der Auwera on his way to a home visit. © 2019 Stephanie Hancock for Human Rights Watch

This, co-founder Patrick Janssens admits, is a source of irritation for some.

“It's annoying [for hospitals] that our figures show that after hospitalization, lots of things aren't resolved,” Janssens said. “But we don't have our mind set on closing hospitals. The challenge for me is how we can continue our activities while being in competition with residential psychiatry.”

It’s worth stressing that mobile teams’ cost-effectiveness is not a reason to invest less in mental health – if anything, more resources are needed. The fact that so many people contact TANDEMplus for help, even after receiving specialized medical treatment, shows that the need for effective mental health care is greater than ever. 

“Our Strength Is Also Our Limit” Steven Lambrecht, TANDEMplus worker

Staff meeting at TANDEMplus offices in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

While TANDEMplus’ small team helps many people – on average around 400 a year – with more staff, they would be able to help even more people. Ideally the government would invest in more person-centered programs like TANDEMplus. There are other limits too, like the fact that calls are only accepted during office hours, and that there is no weekend coverage.

Another difficulty is how best to withdraw staff when they’ve bonded strongly with the person they’re visiting. TANDEMplus guidelines say engagement should be short-term – ideally not longer than six weeks. But Janssens admits this can be hard.

“We try to establish, or re-establish, a contact network around the person and then withdraw,” said Janssens. “It’s not easy because people will form an attachment.”

The flip side of TANDEMplus’ strict rules about consent – the very thing that sets it apart from its peers – is that some people who could benefit from help unfortunately do not receive it.

“The whole model rests on the person agreeing for us to come,” said Philippe Hennaux. “We have to drop a whole number of cases of people who say ‘We don't want to see you.’ I haven't invented a solution for that yet.”

Interactions can also end abruptly.

“If you invite me to your house, it's your house, not a hospital,” Hennaux said. “You can make me a coffee, [but] then tell me to get out and you don't want to talk to me anymore. And I have to follow your opinion.”

“She Says The Right Thing” Maya  

A general street scene in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch (NB: No-one associated with TANDEMplus is depicted in this photograph)

At the heart of the TANDEMplus philosophy is a sense of equality. For people like Maya, who’ve been subjected to forced treatment in the past, their fear of psychiatry is understandable.

“Even when you go voluntarily to the hospital, at any point it can become involuntary,” Maya said. “At any point they can inject you or not let you go home.”

Maya says forced treatment made her reluctant to cooperate in the past, but she trusts her TANDEMplus worker Céline Godart because she knows she won’t harm her.

And Godart, who once reached Maya within minutes of her phoning to say she wanted to jump off a bridge, has played a key role in keeping Maya safe.

“Céline is the only person who is on my side,” Maya said. “She can convince me to do things, to take care of myself, when others can’t.”

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am
Video

Brussels: Innovative Mental Health Support

Mobile Unit Helps Keep People Out of the Hospital

(Brussels) – A mobile team in Brussels, Belgium that supports people with psychosocial disabilities, or mental health conditions, in their own homes offers an innovative rights-based alternative to residential psychiatric care, Human Rights Watch said today in a new web feature. The feature is the first part of a new series documenting good practices to ensure the rights of people with disabilities, which may serve as useful models for European and other governments in carrying out the provisions of the United Nations disability rights treaty.

The web feature, “‘She’s My Ally In My Battle’: How Personal Support, Not Medicine, Is Helping People With Mental Health Conditions Get Back On Their Feet,” showcases the work of TANDEMplus, a mobile team in Brussels that provides mental health services to people with psychosocial disabilities in their preferred environment, rather than at a hospital. The team is currently composed of five outreach workers who meet people in their homes or in another place of their choice. TANDEMplus staff work hand-in-hand with people to support them in coping with everyday life and to find solutions together.

&quot;She’s My Ally In My Battle&quot;

"She’s My Ally In My Battle"

TANDEMplus works to put control in the hands of the people they assist. Read a special feature that shows how personal support, not medicine, is helping people with mental health conditions get back on their feet.

“This groundbreaking approach puts people with mental health conditions in the driver’s seat at all times,” said Shantha Rau Barriga, disability rights director at Human Rights Watch. “People supported by TANDEMplus fully control what support they receive, and maintain their autonomy and dignity throughout. No one is ever forced; people’s human rights are at the heart of TANDEMplus’ philosophy.”

A woman, who struggles with suicidal thoughts and had bad experiences of forced inpatient psychiatric care in the past said of the program: “[I]t was the first time I experienced such an equal relationship with a professional. She has no power on me. She’s my ally in my battle.”

A person seeking support can contact the team directly, or be referred by a friend, relative, or family doctor. When the mobile team receives a request for support, staff visit the person – initially in pairs – and try to establish a connection. They do not hospitalize people nor deal with medication. Instead they try to help the person regain control over their everyday life. This may mean solving an administrative issue, booking an appointment, or finding a new psychologist. The support is provided only in the short term, with the aim of creating or recreating a successful network around the person and then withdrawing.

Patrick Janssens, co-founder of TANDEMplus, explained why community-based services are essential. “No one gets better in bed. You get better when you’re in contact [with people], when you feel useful, or when you discover you’ve found your place.”

The mobile team avoids hospitalization by helping people tackle everyday problems that might have led to a crisis. The service is free, which also means that the person receiving support does not need to present their ID card and can remain anonymous.

Sixty-one percent of people the staff see have previously been in long-term residential psychiatric hospital care, sometimes multiple times. And 78 percent of them already have in place a family doctor, or a psychiatrist, or both. These figures strongly suggest that people with mental health conditions can benefit from an alternative approach, Human Rights Watch said.

Levels of forced hospitalization are high in Belgium, and mobile health teams can offer a rights-respecting alternative, Human Rights Watch said. The country has one of the highest numbers of psychiatric beds per capita in the European Union – an average of 136 beds per 100,000 people, versus a European average of 69. And the cost to the public is high. Thirty days in a psychiatric hospital costs €4,718, while the same stay on a psychiatric ward of a general hospital costs €10,339.

“Not only is this model effective, according to its users, it’s also cost-effective,” Barriga said. “It's perfectly possible to support people effectively without trampling all over their rights and their dignity. TANDEMplus shows that forced treatment isn’t a necessary evil, it’s unnecessary – period.”

 

Posted: January 1, 1970, 12:00 am

A mobile team that supports people with psychosocial disabilities, or mental health conditions, in their own homes offers an innovative rights-based alternative to residential psychiatric care.

Posted: January 1, 1970, 12:00 am

A man sits in the yard at a mental health facility in the city of Herat, April 2014.

© 2014 Aref Karimi/AFP/Getty Images

He carried his sister’s limp body over the mountain to escape the fighting. Bullets flew around them and her blood stained his clothes.

“There was no chance of taking her to the hospital, we had to care for the others,” Mirwais told me as we sat in a tent ripped half open by the wind and dust that battered the displaced people’s camp where he lives east of Herat, Afghanistan’s third largest town. “When we crossed the mountain, she had lost her soul.”

Her name was Guldastah. It means “bouquet of flowers” in English. She bloomed no longer than fourteen years.

Twenty-nine-year-old Mirwais – who did not want us to use his real name – is one of many Afghans who have suffered in that country’s four-decades of armed conflict, but his story should resonate with the hundreds of people gathering in Amsterdam today for the International Conference on Mental Health and Psychosocial Support in Crisis Situations. The conference aims to highlight the mental health needs of people in emergency situations.

Mirwais’ traumatic experiences actually began before his sister’s death. In less than two years, the farmer from Faryab province said he lost most of his cattle to drought and had to flee his home more than 20 times due to fighting between the Taliban and Afghan government forces. Guldastah died during one of those escapes.

A few weeks after her death, Mirwais began to experience flashbacks and bouts of anger. “I had headaches and was angry at my family,” he explained. “Especially when it is noisy. If my kids are next to me, I beat them.”

Mirwais told me that beating one’s family is no honorable thing, so he began to seek help.

Afghanistan has been devastated by violence, and it is estimated that half the population experiences depression, anxiety, or post-traumatic stress, which can have a disastrous impact on people’s mental health and the well-being of their relatives and friends. Despite this, the government only spends about US$0.26 per capita on mental health, out of $7spent annually per capita on health services in general.

The World Health Organization says an appropriate mental health system in low-income countries such as Afghanistan would require an investment of $3 to $4 per capita. International donors have invested heavily in health services but focused their attention on physical, rather than mental health.

So, when Mirwais went to see a doctor the first time, he encountered what many Afghans experiencing psychological distress face: instead of being offered psychosocial support, he was told he had a stomach problem. Unsurprisingly, the medication he received did not help.

In April 2019, I travelled to Afghanistan for Human Rights Watch and interviewed 21 people in Kabul, Kandahar and Herat who had experienced psychological distress after direct exposure to conflict-related violence, such as suicide attacks, aerial bombardments, ground fighting, and detonations of unexploded munitions. Thirteen of these people had received little to no psychosocial support from public health services. Nine of them said they did not know that public mental health services existed.

Having again fled his home because of the drought and fighting, Mirwais today has limited access to a psychosocial counsellor provided by a nongovernmental organization in the displaced persons camp where he lives. But for many Afghans, accessing psychosocial support and mental health services remains a daunting task. For women and girls, the barriers stand higher still.

Over the past 15 years, the government has trained roughly 750 psychosocial counselors who can provide basic mental health counseling and facilitate referrals. But less than 10percent of the population is using these services. Those who do use them can suffer abuse, such as forced hospitalizations and treatments.

The health-seeking behavior of Afghans with mental health conditions is influenced by individual, cultural and structural barriers, ranging from poor knowledge about health and available services to poverty, social exclusion, stigma, gender discrimination and the ongoing conflict. But the government can and should do more to provide access to adequate mental health services and ensure that these services are comprehensive and free from coercion. Access to health care does not mean doling out more pills.

To start, the Afghan government should conduct public awareness campaigns to inform people about mental health, reduce stigma and highlight available services. It should instruct health workers to proactively provide referrals to mental health services, with special attention to the needs of women and children, and consider less expensive ways of providing psychosocial services, such as remote counseling through mobile phones.

Afghanistan’s international donors, many of whom are gathering in Amsterdam today, should continue their efforts to improve the mental health system through technical assistance and greater support. They should focus on providing medical and psychosocial counsellors with longer trainings, ensure the full inclusion of counseling psychology in university curricula, and encourage the government to deploy and retain more psychosocial counsellors, especially in rural areas.

“Everyone from the president to the average person admits that mental health is a problem in the country,” one Afghan mental health professional told me. “It’s shameful that the budget is so low.”

This lack of resources has a clear impact on people like Mirwais, their families and the Afghan public. But it does not absolve the government of its obligation to provide adequate mental health care, especially when international donors are available to help. And help they should.

Access to psychosocial support and mental health services is a basic human right.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am
Video

Afghanistan: Little Help for Conflict-Linked Trauma

More than half the Afghan population, including many survivors of conflict-related violence, struggle with depression, anxiety, and post-traumatic stress, but fewer than 10 percent receive adequate psychosocial support from the state, according to government documents. The Afghan government and international donors should expand mental health services and outreach campaigns.

(Amsterdam) – The Afghan government is failing to provide sufficient psychosocial, or mental health, support to Afghans who have experienced traumatic events, Human Rights Watch said today.

More than half the Afghan population, including many survivors of conflict-related violence, struggle with depression, anxiety, and post-traumatic stress, but fewer than 10 percent receive adequate psychosocial support from the state, according to government documents. The Afghan government and international donors should expand mental health services and outreach campaigns.

“Decades of violence have left many Afghans experiencing deep psychological wounds, as well as physical ones,” said Jonathan Pedneault, conflict and crisis researcher at Human Rights Watch. “There is an urgent need for expanded psychosocial services to support Afghans exposed to violence, suicide bombings, and airstrikes, and prevent the long-term effects that can be debilitating to survivors, families, and entire communities.”

A man sits in the yard at a mental health facility in the city of Herat, April 2014.

© 2014 Aref Karimi/AFP/Getty Images

With large parts of the country facing armed conflict, a weak health system, and a lack of professional health and social workers, mental health services are largely failing to meet the population’s needs. People in rural areas, about 75 percent of the population, are particularly affected. Discriminatory social norms create extra barriers for women and girls.

Forty-one years of war have had a devastating impact on the mental health of millions of Afghans. A 2018 European Union survey found that 85 percent of the Afghan population had experienced or witnessed at least one traumatic event, and averaged four. Half of those surveyed had experienced psychological distress, with one in five Afghans “impaired in his or her role because of mental health problems.”

The government spends only US$7 per capita on health services annually, far below the $30 to $40 that the United Nations Commission on Macroeconomics and Health considered appropriate in 2001. The Public Health Ministry says only about 26 cents of that is spent on mental health. While the mental health budget has increased since 2006, it remains below the $3 to $4 per capita the World Health Organization (WHO) has determined is an appropriate investment for mental health systems in low-income countries such as Afghanistan.

The lack of services, as well as a distrust in public health care and corruption, lead people to pay about three-quarters of their health cost, despite government efforts to provide universal free health care. While adequate investment in mental health is important, the funds need to be spent appropriately, respecting human rights standards, Human Rights Watch said.

The Afghan government has an obligation under international human rights law to move toward the highest attainable standard of health, including mental health, to the maximum of its available resources and on the basis of informed consent. All parties to the conflict, including the Taliban insurgents, are responsible in the areas they control for the availability, accessibility, acceptability, and quality of health care, and to facilitate humanitarian aid.

In 2004, the government made mental health a high health priority and included it in the Basic Package of Health Services (BPHS), which outlined what every Afghan should be able to get within an hour’s walking distance of their home. While government services have fallen short, permanent and mobile clinics run by nongovernmental organizations for displaced people sometimes offer psychosocial services.

A man sits in the yard at a mental health facility in the city of Herat, April 2014.

© 2014 Aref Karimi/AFP/Getty Images

In April 2019, Human Rights Watch interviewed 21 Afghans – 14 men and 7 women – in Kabul, Kandahar, and Herat who had experienced psychological distress after direct exposure to conflict-related violence, such as suicide attacks, aerial bombardment, ground fighting, and casualties from unexploded munitions. More than half said they had received little or no psychological support from public health services. Nearly half said they did not know about existing mental health resources.

Human Rights Watch also interviewed 11 doctors and public health specialists who regularly encounter survivors of conflict-related violence, and eight aid workers who provide mental health care and fund programs.

The Human Rights Watch findings, while based on a small number of interviews, are consistent with recent reports and studies on Afghanistan’s mental health system.

Several people interviewed said they believed the lack of early mental health support exacerbated their psychological distress, which included flashbacks, depression, suicidal thoughts, and inflicting violence on family members. In some cases, they lost income or their jobs.

“Ahmad S.,” 23, was offered no psychological counseling after a suicide bombing attack that killed at least 20 people. “It was time to leave the office, about 4 p.m.,” he said about the attack near the Supreme Court in Kabul. “The suicide bomber passed by me and stepped on my shoe, so I took a tissue to clean it and then the explosion happened. I saw dead bodies all around me and parts of bodies.”

Ahmad was treated for injuries at the military hospital, but “Nobody came to ask about my mind,” he said. “They only treated my body.” Two years later, Ahmad sought help but the trauma remains. “I still have flashbacks, all night I can’t sleep,” he said. “I get angry easily, [especially] when people make noise. But I was keeping that anger inside, and I was very sad. I don’t know what kind of treatment should be provided but there should be people asking about our needs.”

In a September 30 email to Human Rights Watch, the Afghan public health minister, Dr. Feroz Ferrozuddin, confirmed that his ministry is aware of the inadequacies of mental health services and that “further policy and financial investment is required given the extent and scope of the challenge to ensure we can effectively address it.”

To begin addressing the shortfalls, the government should increase the scope and reach of its public awareness campaigns to raise mental health literacy and reduce stigma. It should instruct health workers to provide referrals to mental health services, with special attention to women and children. And it should consider less expensive ways to provide basic services, such as remote counseling through mobile phones, focusing intervention on specific communities, self-help training, and peer support groups, as well as incentives to increase the number of counselors in rural areas. All of this should be done from a person-driven approach that does not rely on involuntary treatment or hospitalization.

“This should not be about handing out pills but about getting people the support they need,” said Pedneault.

Afghanistan’s international donors should increase support for government efforts that strengthen the mental health system, particularly those focused on women and children. They should also help improve training for health workers and psychosocial counselors.

“Donor countries should continue to assist the government in prioritizing local psychosocial intervention and increase the availability of mental health services to survivors of conflict-related violence, country-wide,” Pedneault said. “Not doing so will exacerbate suffering from the war and carry many social costs.”

Lack of Mental Health Support

One-third of the 21 survivors of conflict-related violence Human Rights Watch interviewed said they received medical care at clinics or hospitals shortly afterward. All were treated for their physical injuries and described to medical staff how they were injured, but none were referred to mental health counselors or services, or were told such services existed. In part, this was due to the limited referral systems between components of Afghan’s health system. All survivors interviewed are identified with pseudonyms to protect their privacy.

“Armin B.,” a 38-year-old merchant from Kabul, described his reaction when his 13-year-old son was killed in a suicide attack on a Shia Muslim gathering in March 2018 and he recognized a piece of his son’s jacket at the bomb site: “I fell to the ground, I couldn’t control myself. My body was shaking, and I was trying to put Allah in my heart and accept what had happened.” As for mental health services, he said: “I am not aware about [these] services offered by the government. It would be necessary, but I don’t think they exist at all.”

More than a year later, Armin said he still struggled with the impact of his son’s death: “I get angry when my other children do something and then I regret it an hour later.”

“We should follow up with survivors [of traumatic violence], go to their homes and follow them over months,” said Dr. Shafi Azim, a psychiatrist working at the public Kabul Mental Health Hospital. “But the budget and resources do not allow for this.”

Health literacy – the capacity to obtain, process, and understand basic health information – remains low in Afghanistan and awareness of mental health conditions and services is even more limited. A third of those interviewed who experienced trauma-related distress had not considered seeking help because they did not know such services existed.

“Sayyid A.,” a 28-year-old law graduate from Kabul, said his education and work prospects were deeply affected after experiencing depression when his younger brother died in a bomb blast on the road to Maidan, just outside Kabul, five years ago.

“I was 23 and finishing my law studies [when he died],” Sayyid said. “It was difficult for the whole family. I was top in my class, but it changed my grades a lot.” While he remembers having an easy time connecting to people before the tragedy, he says he now finds it difficult to relate to life. “Back then, I was very enthusiastic. But now I don’t want to be in parties or places where there is laughter and happy people. Whenever I [do], I suddenly remember that I lost my brother and that there was so much sadness and crying.”

While Sayyid recognizes that he has been struggling with his brother’s tragic death, he didn’t try to seek help. “It didn’t cross my mind that I could share those thoughts with someone,” he said.

The lack of mental health literacy and the stigma and incomprehension that come along with it highlight the need for health authorities to reach out to victims of conflict-related violence and their relatives and increase public awareness campaigns about mental health and available services. The government’s 2019-2023 National Mental Health Strategy says, “the weakest aspect of the current mental health programme is the lack of sustained public mental health education to increase awareness and acceptance of mental health care.” Doing this would require improving the referral systems and their dissemination among all health personnel.

Health professionals should also be better trained to identify mental health conditions and to refer patients to community-based programs, social services, and psychosocial counselors.

“Siddiqui J.,” a 62-year-old man from Bamiyan, survived a suicide bombing during Ashura celebrations at Kabul’s Abu Fazl mosque in 2011. He lost a hand during the attack and received medical treatment. But when he looked for support to deal with the psychological impact, the doctors provided sleeping medication that he said did not help.

Siddiqui said that shortly after the attack, he began to experience psychological distress. “When I try to sleep, war memories come to my mind and my body starts shaking. Everything gets dark and I lose consciousness. I feel hot in the body and pressure on my shoulders, so I get out of bed and then fall unconscious,” he said.

Siddiqui finally sought help from a doctor six years later. “He only prescribed me a medication and said that I am OK,” he said. Since his condition did not improve, Siddiqui went to see another doctor six months ago. “I went for my body and said I can’t sleep and the doctor prescribed me medicine to sleep,” he said. “When the doctor asked why I can’t sleep, I told them what had happened, and I got a tablet and syrup. He referred me to a ‘brain doctor’ but [he] only prescribed me medicine to sleep.”

The scarcity of community-based support, social services, and mental health counseling and the lack of broader mental health promotion and literacy campaigns can exert a high cost on individuals, families, and society.

“Farzaneh G.,” 26, said that her life completely changed after her husband, Arash, survived two insurgent attacks in the Dasht-e Barchi neighborhood of Kabul. When he was treated at a hospital, no one asked him about his mental well-being. Shortly thereafter, he began to experience emotional distress and subject his family to outbursts of anger. “In the past, life was good,” Farzaneh said. “Not anymore. I was two months pregnant [when the second attack happened]. When I saw the injured body of my husband, I got shocked and lost the baby two days later.”

Adding to Farzaneh’s despair is her husband’s current psychological state. “Sometimes I feel bad, but I am forcing myself to manage the house and the children since my husband is sick,” she said. “When I get angry or sad or feel pressured, I don’t enter the house because I don’t want him to feel bad. Sometimes, I hit my babies and get in a corner of the room. I cannot breathe, I feel like I am suffocating and just start to cry loudly. If I don’t, it feels like I can’t speak.”

“Amiri K.,” an 18-year-old witness to the August 26, 2017 attack on Imam Zaman mosque and a survivor of the March 7, 2019 attack during a commemoration for an ethnic Hazara leader, Abdul Ali Mazari, killed in 1995 by the Taliban, explained how his experiences affected his life.

The young man, a gymnast, said he saw bodies without feet or a head and streets full of blood when he passed by the Imam Zamam mosque on his way back from training.

Amiri was then shot in the arm during the 2019 Mazari attack and hospitalized at the emergency surgical center for war victims. “Right after the incident, I took a tablet prescribed by the doctors to relax the body and the mind every night for two weeks,” he said, adding that the medication failed to improve his mental health. He said that over less than a month, between March and April 2019, he experienced three “shocks:”

When I get shocked, I remember all that happened and then everything becomes black and I lose consciousness. It usually happens when people talk about the war; the memories just return, and I cannot control it. If I don’t go unconscious by the time they have changed subject, [the memories] just continue. And in Afghanistan, most people talk about the war.

Amiri feels he has little hope for the future. “Misfortunes continue in Afghanistan, and people just continue to suffer in silence,” he said, adding that he has stopped going to school and abandoned gymnastics out of fear of further attacks.

Accounts of people who are receiving mental health services show how a trained psychosocial counselor’s attention can help to alleviate a person’s trauma and mitigate the long-term effects on mental health.

“Mahvash N.,” in her twenties, got psychosocial counseling, but only years after she began experiencing symptoms. As fighting between Afghan government forces and the Taliban intensified in her home province of Faryab after 2013, the United States carried out more airstrikes in the province, some of which hit near Mahvash’s home.

“Planes came and targeted areas outside the village,” she said. “We could hear the bomb and see the lights.” Whenever there was fighting, Mahvash and her children would cower in their house. “We would hide in the rooms and be by the side of a wall.…[T]he children were scared, but not crying, not saying anything. We were afraid to sleep for many nights after that.”

Mahvash’s oldest son, Naqibullah, died during fighting near her house. “The child was scared, and he ran and fell in the well,” she said. Ever since, Mahvash said, she experiences flashbacks: “When I remember this, there is too much burden on my heart. When I see boys the same age [as my son], I get too stressed. If my other children cry, I get angry with them and whatever I have at hand I throw at them.”

In 2018, Mahvash and her surviving children fled the violence and a drought in Faryab for Herat. She joined tens of thousands of internally displaced people living in a camp outside the city.

At the camp, she has been receiving some limited psychological counseling from HealthNet TPO, an international organization contracted by the Public Health Ministry to provide mobile health services. “With the counseling, it helps,” she said. “Now, when I have flashbacks, I go out and consult my heart to remember that everyone passes away.”

Exposure to Violence, Trauma

Afghanistan has been at war since April 1978. The extraordinary level of violence experienced and witnessed by tens of millions of Afghans over three generations has inflicted deep traumatic wounds. Conflict-related trauma can persist and worsen unless those affected have access to psychosocial support.

A World Health Organization review published in June 2019 that examined 129 studies of “mental disorders” in conflict-affected populations found that nearly one-quarter of these populations experienced depression, anxiety, post-traumatic stress, bipolar condition, and schizophrenia. The study, which included Afghanistan, highlighted the “humanitarian imperative to reduce suffering [and] implement scalable mental health interventions to address this burden.”

Conditions in Afghanistan are extreme, and the prevalence of psychosocial and mental health conditions may be higher as a result. Just how many Afghans are affected is difficult to assess, but a 2002 US Centers for Disease Control and Prevention survey in 50 districts with 699 Afghans without disabilities and 100 Afghans with disabilities found that 62 percent had experienced four or more traumatic events over the prior 10 years, including exposure to attacks, loss of relatives, and lack of water and food.

The study found that 68 percent of people without disabilities and 72 percent of people with disabilities reported symptoms of depression. 72 percent of people without disabilities and 85 percent of people with disabilities reported symptoms of anxiety. The prevalence of symptoms of post-traumatic stress was 42 percent in both groups.

A 2005 consultation by the Afghan Independent Human Rights Commission of abuses since the Soviet invasion gives a similar sense of the problem’s proportions:

The atrocities that were committed in Afghanistan are of an enormous scale, and the sense of victimization among the people we spoke to is widespread and profound. Almost everyone had been touched by violence in some way. When we asked 4,151 respondents as part of the survey whether they had been personally affected by violations during the conflict, 69 percent identified themselves or their immediate families as direct victims of a serious human rights violation during the 23-year period.

Another 2005 study found that 67 percent of Afghans reported experiencing the devastating effects of trauma or other psychosocial conditions from the ongoing conflict, with the unemployed, older people, and widowed women particularly affected.

A 2011 report published by the World Bank estimated that half of the Afghan population age 15 or older has experienced depression, anxiety, or post-traumatic stress.

In 2018, Human Rights Watch documented the enduring harm to families and communities from ongoing violence, insecurity, and economic hardship, including serious emotional and psychological trauma, and urged the government and donors to provide them support.

An employee cleans the corridor of the women's ward at the mental health hospital in Kabul, November 2012.

© 2012 Adnan Abidi/Reuters

Barriers to Services

Afghans who experience mental health and psychosocial conditions face a variety of hurdles to obtain services. The 2019-2023 National Mental Health Strategy says that fewer than 10 percent of the population are getting the services that are available.

Whether people seek help is influenced by an array of individual, cultural, and structural factors, ranging from poor health literacy to poverty, social exclusion, stigma, gender discrimination, and the ongoing conflict.

Women and girls face notable difficulties since their freedom of movement is often disproportionately affected by insecurity. Gender inequality and discriminatory social norms also create major barriers for women and girls. Their access to health services is often determined by male members of their household and may be conditioned on the availability of segregated services with female staff and segregated infrastructure, such as separate gates and waiting areas.

While a number of international and national groups are providing psychosocial services designed specifically for women and survivors of gender-based violence, the Public Health Ministry has a long way to go in ensuring equal access for women.

According to Public Health Ministry data, as of 2016, only 40 percent of health professionals (doctors, nurses, midwives) were female, 63 percent of them midwives. Because an estimated 87 percent of Afghan women and girls experience some form of abuse in their lifetimes, their mental health needs may be related to or compounded by abuse from the same men who determine whether they can seek services.

Human resources available for mental health programming are also limited. Across Afghanistan, only one psychosocial counselor is available for every 46,000 people, according to Afghanistan’s National Strategy for Mental Health for 2019-2023. Their ability to conduct successful therapy is affected by their lack of experience and limited training.

The WHO says the country has roughly only one psychiatrist for every 435,000 people and one psychologist for every 333,000 people. Only 200 beds are available in public mental health facilities, or one for every 172,500 Afghans.

As a result, few Afghans who describe experiencing the psychological impact of the conflict will seek professional mental health services. A 2018 EU-commissioned nationwide mental health survey found that 88 percent of the total respondents, half of whom had experienced psychosocial distress, never sought mental health assistance. Of the 12 percent who sought assistance, 47 percent said they consulted a doctor, 36 percent went to see community health workers, and 17 consulted an imam (prayer leader in a mosque).

There is heavy reliance on community health workers or volunteer community members, usually a married couple trained to provide limited health services at the community level, especially in areas where doctors are not nearby. The 2019-2023 Mental Health Strategy states that fewer than half of them are trained to provide psychological first aid. Similarly, religious figures are often ill-equipped to appropriately assist people experiencing psychosocial distress and sometimes contribute to disseminating stigmatizing beliefs, such as the notion that people with mental health conditions are possessed by evil spirits.

Six of the people interviewed came from rural areas and had been displaced to urban centers as a result of the conflict or environmental disasters. Most described struggling to get services in their home areas because of the insecurity, absence of nearby health facilities, and the costs, including travel expenses, medication, or private doctor fees. The government has abolished service fees, but the Public Health Ministry estimates in its 2016-2020 National Health Strategy that up to 74 percent of health expenditure consists of out-of-pocket expenses and that the delivery of health services is made worse by “persistent corruption.”

The Afghan mental health system remains largely hospital-based and struggles to meet the demand, particularly outside of urban centers. WHO estimates that to meet the health-related UN Sustainable Development Goals in low-income countries such as Afghanistan, a minimum of 23 health professionals – doctors, midwives, nurses – are needed per 10,000 habitants. But, according to 2016 Public Health Ministry figures, there were only 4.98 professional health workers per 10,000 habitants, with WHO figures showing that the number of physicians is as low as 0.6 per 10,000 habitants in rural areas, in comparison to 7.2 in urban ones.

“Firouzeh G.,” who was married at 15 and is now 20, was 17 when her husband departed their home province of Badghis for Iran, leaving her to care for their two children in a war zone. “He left for work,” she said. “He didn’t tell me anything, about how long he would go. He said, ‘I’m leaving and if I’m not captured, I’ll be back.’ My heart sank.”

Shortly before her husband left, fighting had increased in her district, which has experienced intense fighting between the Taliban and US-backed Afghan forces since 2016. Firouzeh said that Taliban fighters began to pressure wealthier villagers to support them and executed those who refused. “Once, we also witnessed an airstrike near the village,” she said. “It was a heavy strike and it was very close. It killed animals and there were body parts everywhere.”

Eventually, Firouzeh learned that her husband had been jailed in Iran and would not return. “That night, all night, I was just going in and out of the house,” she said. “I couldn’t control myself. I woke up in the morning and I would be in distress.” Firouzeh said there were no doctors in her area. “There were no doctors close because of the fighting, so [the community] brought me garlic and ice to feel better.” But the garlic and ice did not help. “When I would think about him, I would become impatient, my heart was heavy, and I became unconscious,” she said. “It happened once a day, at least. Sometimes up to five times.”

Firouzeh fled with her children to an internally displaced persons camp near Herat, where she receives psychosocial counseling from volunteers for HealthNet TPO.

International Legal Standards

Afghanistan is a party to the International Covenant on Economic, Social and Cultural Rights, which in article 12 obligates governments to recognize “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health,” and requires governments to ensure that health care – including mental health services – based on informed consent and to make them progressively more available, accessible, acceptable, and of good quality.

Non-state armed groups such as the Taliban that exert effective control over areas of the country are not legally bound by the covenant but should respect the right to the highest attainable standard of health.

Afghanistan is also a party to the Convention on the Rights of Persons with Disabilities and its Optional Protocol. The convention states that governments should provide health services “as close as possible to people’s own communities, including in rural areas,” and provide for “early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities.” It also states that governments should take “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict [and] humanitarian emergencies.”

Under international humanitarian law, or the laws of war, applicable to the conflict in Afghanistan, all parties to the conflict must use their best efforts to provide protection and care for the wounded and sick, which extends to mental well-being. The Second Additional Protocol to the Geneva Conventions of 1977 states that all wounded and sick people “shall receive, to the fullest extent practicable and with the least possible delay, the medical care and attention required by their condition” from the parties to the conflict. This includes “civilians, who, because of trauma, disease or other physical or mental disorder or disability, are in need of medical assistance.” Parties are also obligated to facilitate aid organizations to provide for the civilian population’s protection and care.

As a growing body of military and civilian studies demonstrates the pervasive psychological impacts of sustained exposure to conflict, medical attention to victims of conflict-related violence should include attention to their short and long-term psychological well-being.

The voices and needs of people with disabilities, including people with mental health conditions, have largely been absent from many countries’ peace and security agendas. On June 29, 2019, the United Nations Security Council adopted Resolution 2475, meant to protect people with disabilities in conflict, urging governments “to enable [their] meaningful participation and representation…in humanitarian action, conflict prevention, resolution, reconciliation, reconstruction and peacebuilding.”

Recommendations

The government of Afghanistan, with assistance from international donors, should expand and promote mental health services and psychosocial support for people who have experienced traumatic events related to the conflict. The following recommendations offer ways for the Afghan government and donors to provide timely and ongoing psychosocial support to survivors of attacks and other conflict-related trauma.

The Afghan Ministry of Public Health should:

Seek to increase the number of psychosocial counselors and trained health workers (community health workers, nurses, midwives, doctors), especially women, who can educate their communities and patients about mental health, perform psychological first aid, provide limited forms of psychosocial counseling, and ensure proper referral to mental health professionals (psychologists, psychiatrists, neurologists) if requested by the patient or as appropriate. Training should be offered in rural areas and those recruited should have adequate working conditions and other incentives to promote retention.

Establish monitorable and robust referral systems so that emergency, women’s, and other health departments can request and obtain appropriate mental health support for patients.

Set sufficient standards in the attribution of health service delivery contracts to aid agencies and other organizations to ensure that they deliver appropriate, timely, and culturally sensitive and consent-based mental health services.

Instruct health care providers and existing mental health professionals to offer available government-funded psychological first aid to survivors of conflict-related events free of cost.

Design and provide mental health services specifically targeted to help women and girls.

Take all necessary measures to ensure the availability and continuity of mental health services in areas controlled by the Taliban.

Increase outreach to the public about mental health and available services, such as through radio, television, and community events. Efforts should focus on groups who are less likely to access mental health services, including women and girls, and rural populations.

Investigate corrupt practices, such as charging patients at public hospitals for free services, both within the Public Health Ministry and by other health providers that hinder access to mental health services.

Consider raising with mullahs and other religious figures, in coordination with the Religious Affairs Ministry, the importance of referrals to appropriate services and support.

International donors to Afghanistan should:

Provide technical assistance to the Public Health Ministry to ensure more efficient appropriation of resources to help address budgetary under-investment in mental health services. These efforts should address the disparities in mental health services between rural and urban areas through less expensive community-based psychosocial services, such as increasing psychosocial first aid by community health workers and midwives and the expanded use of mobile clinics.

Assist the Public Health Ministry to provide remote mental health education and confidential psychosocial counseling by phone, possibly by strengthening and expanding services by the free “6464 Family Support Hotline.”

Support government efforts to develop mental health services that target underserved women and girls.

Support Public Health Ministry efforts to increase the number and professionalism of psychosocial counselors and trained health workers (community health workers, nurses, midwives, doctors) who can educate their communities and clients about mental health, perform psychological first aid, provide basic psychosocial counseling, and provide referrals as appropriate to mental health professionals (psychologists, psychiatrists, neurologists). The ministry should give priority to developing and retaining trained staff in rural and conflict-affected areas through better working conditions and job incentives.

Parties to the conflict should:

Cease all intentional attacks on civilians, attacks that do not or cannot discriminate between civilians and combatants, and attacks that are likely to cause disproportionate civilian harm.

Protect the right to health to all civilians living in areas under control, facilitate humanitarian access to populations in need, including for the provision of mental health support, and cease all attacks on medical infrastructure and personnel.

Posted: January 1, 1970, 12:00 am

Inspiring story of #Malawi musician and albinism activist, Lazarus.

 

Posted: January 1, 1970, 12:00 am

An Iranian student sits in a wheelchair in a classroom with fellow students.

© May 2019 Fars News Agency

(New York) – Children with disabilities face discrimination and significant barriers in getting an education in Iran, Human Rights Watch and the Center for Human Rights in Iran said in a joint report issued today as the school year begins.

The 52-page report “‘Just Like Other Kids’: Lack of Access to Inclusive Quality Education for Children with Disabilities in Iran” documents discrimination and barriers to education in the country’s public school system for most children with disabilities. A major obstacle is a mandatory government medical test that can exclude them from education altogether, the groups found. Additional barriers include inaccessible school buildings, discriminatory attitudes of school staff, and lack of adequate training for teachers and school administrators in inclusive education methods.

“Blocking children with disabilities from accessing education in an inclusive environment contributes to the social stigma millions of people with disabilities in Iran face daily,” said Hadi Ghaemi, executive director of the Center for Human Rights in Iran (CHRI).“Educating children with disabilities in the same environment as their peers improves learning for all children and benefits society as a whole.”

Human Rights Watch and the Center for Human Rights in Iran interviewed 37 people in Iran, including children with disabilities, parents of children with disabilities, activists, and government officials. This research follows a 2018 joint report by the groups that documented discrimination and lack of accessibility for people with disabilities in Iran, stigmatization of people with disabilities, abusive behavior by some state officials and employees, and barriers in getting transportation and health care.

Children with disabilities have the right to a quality inclusive education in which children with and without disabilities study together in mainstream schools with necessary support. Inclusive education is key to reducing stigma and promoting the rights of people with disabilities throughout their lives, the groups said.

Iran’s public school system subjects all children to a discriminatory medical assessment based on an IQ test to determine whether they are “educable.” Children with low scores are compelled to attend a segregated “special” school. Children with the lowest scores are denied education altogether. 

One parent described learning that her 7-year-old daughter, who is blind and has difficulty communicating, was deemed “uneducable” after her medical assessment: “The day they told me that they can’t register my daughter … was one of the worst days of my life.… I want her to go to school just as all other kids go. I had purchased all the school supplies for her, but she didn’t answer any questions in the assessment session, and the man there said that she is not educable. I brought her back home, crying all the way.”

Children with disabilities who do enroll in schools face various barriers. These include inaccessible buildings, classrooms, and toilets, or lack of aides and other support. The government should ensure reasonable accommodations so that children with disabilities have the support they need in the classroom and the building. These can include assistive devices such as hearing aids or educational materials in formats such as braille or audio.

The lack of such support can put a heavy burden on families. Some parents said that they had to accompany their child to school to carry them up and down stairs or to give them the assistance they need with writing or reading. 

Inaccessibility and lack of reasonable accommodations in schools can also compel children with disabilities to drop out of school or to enroll in a school far from home, or even in a residential “special” school where they are separated from their family and community.

Based on government figures, during the 2018-2019 school year only 150,000 children with disabilities of school age were enrolled in school, and more than half of them in “special” schools that segregate them from other students. Estimates put the total number of school-age children with disabilities in Iran at 1.5 million.

In recent years, the Iranian government has adopted some measures to improve access to education for children with disabilities, including significantly increasing the budget for their education and establishing physical accessibility requirements for newly built or renovated schools. It has also expanded some support to children with disabilities attending mainstream schools by offering accessible education materials, including materials in braille or audio formats. 

But in the absence of a comprehensive approach to guarantee inclusive education throughout the school system, these measures are insufficient to ensure that children with disabilities can access education on an equal basis with other children. Iran has ratified the Convention on the Rights of Persons with Disabilities (CRPD) and the Convention on the Rights of the Child, which guarantee the right to quality education for all children without discrimination. The CRPD also requires governments to provide reasonable accommodations and accessibility to support quality education.

“The Iranian government’s approach to education of children with disabilities risks keeping many children with disabilities in Iran on the margins of society,” said Jane Buchanan, deputy disability rights director at Human Rights Watch. “Iran should immediately end its reliance on medical assessments that deny children access to education and move to include all children with disabilities in mainstream schools with their peers.”

Posted: January 1, 1970, 12:00 am

Summary

For most children with disabilities in Iran, going to school is an out-of-reach dream. For the relative few who are able to attend, the experience is often a hard one.

During the 2018-2019 school year, only 150,000 out of an estimated 1.5 million children with disabilities of school age were enrolled in school; 43 percent in mainstream, and the rest in special schools. A 2017 Iranian government study found that disability was the most common reason for children to be out of the classroom.

There are many reasons for their exclusion, including a mandatory medical assessment, physical inaccessibility, discriminatory attitudes of school staff, and lack of adequate training for teachers and school principals in inclusive education methods.

In recent years, the Iranian government has adopted some measures to improve access to education for children with disabilities, including by significantly increasing the budget for their education, and establishing physical accessibility requirements for newly built or renovated schools. It has also expanded some support to children with disabilities attending mainstream schools by offering accessible education material, including in braille or audio formats.

But these measures are insufficient to ensure children with disabilities can access education on an equal basis with other children—as guaranteed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which Iran ratified in 2009, unless there is an overall focus on guaranteeing inclusive education throughout the Iranian education system. Inclusive education involves children with and without disabilities studying together in classrooms in mainstream schools in their communities, with support as necessary. Research shows that an inclusive approach can boost learning for all students and combat harmful stereotypes of people with disabilities.

This report is based on research—including 37 interviews with people in Iran, including children with disabilities, parents of children with disabilities, activists and government officials—conducted by Human Rights Watch and the Center for Human Rights in Iran (CHRI, formerly the International Campaign for Human Rights in Iran) between June 2016 and July 2018, as well as additional research by CHRI between August 2018 to March 2019.

It follows a 2018 report by Human Rights Watch and CHRI that documented, more generally, discrimination and lack of accessibility for people with disabilities, stigmatized abusive behavior particularly on the part of some state officials, as well as barriers in transportation and access to healthcare.

The Iranian government does not allow Human Rights Watch and CHRI to enter the country to conduct independent investigations. As a result, all interviews were conducted in Persian (Farsi) over secure messaging applications.

No child should be considered uneducable or otherwise excluded from education. International law, namely the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which Iran ratified in 2009, guarantees the right to a quality, inclusive education for children with disabilities. Iran’s Constitution guarantees free education for all until the end of secondary school.

The report identifies numerous barriers for children with disabilities to access a quality, inclusive education. In general, we found girls with disabilities, children with intellectual disabilities and autism, and children in remote or rural areas most likely to be excluded. One major obstacle is stigma and lack of information about the right to education among parents, who told us that they fear social judgment that wrongly attributes a child’s disability to parents’ sins or genetic defects, and that their children—both those with disabilities and siblings without disabilities—will be bullied in school.

Another significant barrier for children with disabilities to access a quality, inclusive education is the mandatory medical assessment for school enrollment that all Iranian children must undergo. The assessment determines whether children are “educable” based on an IQ (intelligence quotient) test, and whether they are allowed to enroll in a mainstream school, or if they must go to a special school. Children with an IQ below 70 are considered to have intellectual disabilities. Those with an IQ between 50 to 70 are deemed “educable” and must enroll in special schools; children with an IQ under 50 are considered “uneducable” and cannot attend any school.

One parent described learning that her 7-year-old daughter, who is blind and has difficulty communicating, had been deemed “uneducable” after her medical assessment:

The day they told me that they can’t register my daughter, even in special school, was one of the worst days of my life.…  I want her to go to school just as all other kids go. I had purchased all the school supplies for her, but she didn’t answer any questions in the assessment session, and the man there said that she is not educable. I brought her back home, crying all the way.

According to Iran’s Special Education Organization, responsible for the education of children with disabilities, there were 1,570 special schools in Iran in 2019; some are specialized according to disability, while others, particularly in rural areas, admit children with different disabilities. Special schools segregate children on the basis of disability and do not guarantee children’s right to a quality, inclusive education.

In some cases, mainstream schools refuse to admit some children with disabilities who have passed the mandatory medical assessment. Parents must jump through many hurdles and seek out several schools to enroll their children in mainstream schools, often arguing with resistant principals.

Children with disabilities who do enroll in schools face various barriers accessing a quality education once there. These include inaccessible buildings, classrooms, and toilets, and/or lack of aides and other support, known as reasonable accommodations. Reasonable accommodation is a key component of the right to inclusive education. Accommodations may include hearing aids; braille textbooks, audio, video, and easy-to-read learning materials; instructions in sign language for children with hearing disabilities; structural modifications to schools, such as ramps for children in wheelchairs; and additional qualified staff to assist children with self-care, behavior, or other support needed in the classroom. The denial of reasonable accommodations constitutes discrimination.

For example, children who are blind and teachers interviewed said that audio and Braille textbooks often arrived late, incomplete, outdated, and of low production quality.

Inaccessibility and lack of reasonable accommodations in schools may mean that parents must attend school with their children in order to move them around the school or to provide other support. These barriers may also force some children with disabilities to drop out of school, to enroll in a school far from home, or even have no choice but to attend a residential special school, where children live separated from their families often for many months at a time.

One mother, Najmeh, described how for three years she had made herself available every day to help her 9-year-old daughter Shabnam use the inaccessible bathroom at school. “They [staff] suggested that I put her in diapers, but Shabnam does not accept diapers at all,” Najmeh said. Since school staff did not allow Najmeh to wait inside the school, she sat waiting inside her car. When Shabnam’s father fell ill, Najmeh had to take care of him too. “Because of that, sometimes I couldn’t come to the school, and Shabnam had to spend the day without relieving herself,” Najmeh said.

Training for teachers in inclusive education methods remains limited, also hindering full access to education for children with disabilities. Instead of mainstreaming inclusive education methods and principles in all teacher curricula at universities, special education teaching is offered as a separate program at some universities. New teachers are either trained as special education teachers or as mainstream teachers without the skills and knowledge required for inclusive education.

The UN Committee on the Rights of Persons with Disabilities, which monitors countries’ compliance with their obligations under the CRPD, found in its 2017 review of Iran many of these same concerns. The committee criticized the low prevalence of special education, the low number of children in mainstream schools, and the gap between girls and boys with disabilities attending mainstream education. It also expressed concern about the lack of measures to train teachers, education personnel, and parents about inclusive education, as well as the lack of reasonable accommodation and support for students in mainstream settings.

The Iranian government should transform its approach to education of children with disabilities, replacing the current approach focused on medical assessments, exclusion, and special education with a human rights-based approach. The government should formulate all policy-making, planning and monitoring activities in a way that ensures all children, regardless of disability, can benefit from inclusive quality education on an equal basis. To fulfill this obligation, the government should end discriminatory medical assessments and ensure reasonable accommodations and accessibility in schools. The education system, including teachers, the school environment, and education methods should be reformed to meet needs of diverse learners. Failing to do this can mean thousands of children in Iran left out of education and cut off from one of the key pathways to participating in and contributing to society throughout their lives.

Recommendations

To the Iranian Government

  • Guarantee access to quality inclusive education for children with disabilities on an equal basis with others, including through the provision of reasonable accommodations, in line with the government’s international obligations.
  • Commit to transforming Iran’s education system to make it genuinely inclusive across the country.
  • Amend legislation to define inclusive education in a way that is consistent with the CRPD and the Committee on the Rights of Persons with Disabilities’ General Comment No. 4 on inclusive education, in particular:
    • Make clear that inclusive education is a right for every individual, regardless of disability, that cannot be denied based on a medical or other assessment by state bodies.
    • Repeal the regulations that allow children to be determined “uneducable” and excluded from education.
    • Include a provision that mainstream schools will provide reasonable accommodations and quality education on an equal basis with others to children with disabilities, including access to individualized support measures.
  • Adopt a national strategy on inclusive education that delineates the responsibilities of the Ministry of Education, the State Welfare Organization, and the Ministry of Health at a national, provincial, and district level to ensure a coordinated approach to guaranteeing quality, inclusive education.
  • According to international good practices and standards, collect data on the total number of children with disabilities in the country, including the number of children of compulsory school age in education and out of school, disaggregated by disability-type, location, and other demographic markers. Formulate educational policies, plans, and programs based on data. 
  • Commit to transforming the School Beginner Health and Educability Assessment. In particular:
    • Introduce provisions in law that make explicit that children are not required to have a health and educability assessment determination as a prerequisite to attend mainstream schools.
    • Ensure, and enforce through legal provisions, that assessments are solely for the purpose of determining the individual reasonable accommodations and support which a child will receive to ensure inclusive quality education.
    • Require all health assessment staff to attend disability rights and inclusive education training.
    • Ensure that the conditions under which children are assessed are disability-friendly, humane, and are carried out respecting the best interests of the child.

To the Ministry of Education and the Special Education Organization

Guarantee Equal Access to Education

  • Implement quality, inclusive education at all levels and reinforce the compulsory nature of education for all children. 
  • End any formal or informal practice that undermines the compulsory nature of education and permits school and other officials to rely on an assessment by the School Beginners Health Assessment Plan to deny children access to inclusive education in mainstream schools
  • Ensure maximum inclusion of children in mainstream classrooms and avoid segregation of children with disabilities in special schools, home education, or in separate classrooms within mainstream schools.
  • Ensure that children with disabilities and their parents have real choices and access to adequate comprehensive information regarding their educational pathways. Children and parents should not feel compelled to opt for special schools due to failures of mainstream schools to provide reasonable accommodations for children.
  • Ensure education for students with disabilities, particularly for students who are deaf, blind, or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development, in line with the CRPD.
  • Throughout the development and implementation of policies and programs on inclusive education, consult regularly and meaningfully with children and other persons with disabilities and organizations of people with disabilities. 

Reasonable Accommodations and Individualized Approach

  • Take all necessary measures to an individual-based approach to education for all children including children with disabilities.
  • Ensure reasonable accommodations for children with disabilities based on individual learning requirements. These can involve the provision of braille textbooks and other materials; digital, visual, audio, easy-to-read learning materials, and assistive technology; instruction in sign language for children with hearing disabilities; and aides to assist students with behavior, self-care, learning support, and other considerations.
  • Ensure all schools are physically accessible, including by ensuring that all schools have ramps, entrances to buildings, classrooms, and toilets, and that they comply with Universal Design standards, namely by adjusting the design and composition of an environment so that it may be accessed, understood, and used to the greatest extent possible with adaptation. 
  • In line with the CRPD Committee General Comment No. 4, promote instruction and a teaching culture that moves away from a one-size-fits-all approach to learning towards one that can adapt to different learning abilities and styles; meets the diverse needs of all learners; recognizes that each student learns in a unique manner; and identifies and builds on the strengths and talents of each individual.
  • Ensure an adequate number of trained teachers and other professionals, including, as a priority, aides for students with disabilities in mainstream schools. Allow for the flexible employment and training of aides as necessary to guarantee inclusive education, including as a component of reasonable accommodation.

Training

  • Embed in core teacher training, professional development, and in-service training for all current teachers and student teachers, courses on inclusive education for future school educators based on the human rights model of disability, including on means and formats of communication, educational techniques, and materials to support persons with disabilities. Incorporate practical training that includes, and is led by, people with disabilities.
  • Provide this training to school administrators, principals, vice principals, and other education officials, as well as the staff of the national, provincial and district education offices.
  • Train preschool staff to identify development delays so children can receive adequate support from a very young age.

Awareness-Raising

  • Support the development of a culture of inclusive education in schools and society at large. Specifically, conduct awareness-raising campaigns to combat stigma and prejudice, and offer classes on disability awareness and hold activities for children with and without disabilities together, with the aim of developing respect for people with disabilities.
  • Continue and expand initiatives to educate children with disabilities and their parents about children’s right to education, with the cooperation of the National Broadcasting Organization and the Ministry of Culture and Islamic Guidance.

Data Collection

  • Collect and make publicly available statistics on the number of children and adults with disabilities in various parts of the education system in Iran. Include annual attendance numbers and rates in all categories of schools and vocational colleges, as well as children studying at home, disaggregated by age, gender and type of disability. 

To the Office of the United Nations Children’s Fund (UNICEF) in Iran

  • Urge the Iranian government in private and in public meetings to ensure the rights of children with disabilities, including the right to inclusive, quality education, and support the government in its efforts to do so, including through financial and technical means. 
  • Share with the Iranian government models of good practice on guaranteeing quality, inclusive education for children with disabilities, at all levels of the educational system.
  • Consistently consult with and ensure disabled persons’ organizations, as well as NGOs working on disability rights, are included in and benefit from UNICEF’s activities in Iran to promote the rights of children with disabilities.

Methodology

The initial research of this report was conducted during a joint project by Human Rights Watch and the Center for Human Rights in Iran (CHRI, formerly the International Campaign for Human Rights in Iran) between June 2016 and July 2018. Additional research was conducted by the Disability Rights Division of CHRI between August 2018 to March 2019.

One researcher conducted 37 interviews with people living in Iran for this report, conducting all interviews in Persian (Farsi) over secure messaging applications. We interviewed 14 parents of children with different disabilities, and 4 children with disabilities all above 12. Interviewees also included: 9 teachers; 7 disability rights advocates, and 3 officials of the Special Education Organization, responsible for the education of students with disabilities.

This report uses pseudonyms for all interviewees except one and withholds other identifying information to protect their privacy and security. Locations of interviewees are also obscured for some interviewees to safeguard their security. Children’s ages are at the time of the interview. 

For the last 30 years, the Iranian government has rarely allowed international human rights organizations—such as Human Rights Watch and CHRI—to enter the country and conduct independent investigations. Iran’s record on independent criticism and free expression more broadly has been dismal, particularly over the past decade. Hundreds of activists, lawyers, human rights defenders, and journalists have been prosecuted for peaceful dissent. Iranian citizens are often wary of carrying out extended conversations on human rights issues via telephone or email, fearing government surveillance, which is also widespread across social media platforms such as Facebook, Twitter, and the Telegram messaging application. The government often accuses its critics inside Iran, including human rights activists, of being agents of foreign states or entities, and prosecutes them under Iran’s national security laws.[1]

Where available, Human Rights Watch and the Center for Human Rights in Iran incorporated government statistics and officials’ statements into this analysis.

The researcher sought to interview people from a range of socioeconomic backgrounds; however, most interviewees we were able to contact lived in urban settings in relatively good conditions, meaning they did not face significant economic hardship, often due to family support. Due to communication and security barriers, persons who are deaf and persons with intellectual and developmental disabilities are less represented among the interviewees compared to people with other types of disabilities. Persons who are deaf were interviewed in writing through secure messaging applications.

The researcher asked interviewees to suggest a time slot and asked them to feel free to interrupt the interview any time if they felt uncomfortable either with the questions or due to any perceived threat to their security.

All participants were informed of the purpose of the interview and the ways in which the information would be used and were assured anonymity. None of the interviewees received financial or other incentives for speaking with the researcher.

In February 2017, Human Rights Watch sent a letter to Iran’s Special Education Organization requesting information and response to questions about access to inclusive education for children with disabilities in Iran. At time of writing, it had yet to respond. The letter is annexed to this report.

I. Background: Education in Iran

Schools in Iran

The education system in Iran includes preschool, elementary school, lower secondary education, and higher secondary education. There are separate schools for boys and girls, and schools can be public or private. The Ministry of Education is responsible for basic and secondary education, including teacher-training programs.[2]

The Ministry of Education’s Special Education Organization (SEO) oversees the education of students with disabilities in special schools and mainstream schools.[3] The SEO has the responsibility to implement a mandatory school enrollment assessment, known as the School Beginner National Health and Educability Assessment (Educability Assessment); draft and publish educational material for children with disabilities in different formats; and employ, train and retrain teachers.[4]

As of the 2018-2019 school year, there were 1,570 special schools in Iran, including 28 boarding schools and 24 private schools.[5] In populated areas, special schools can be organized based on disability, such as for children who are blind, or for children with intellectual disabilities. A special school can also enroll children with all types of disabilities. This is common in smaller cities. Special schools that segregate children on the basis of disability do not guarantee children’s right to a quality, inclusive education.

In addition to providing education and rehabilitation services to students with disabilities, 800 special schools, known as “supporting schools,” support the education of children with disabilities who attend local mainstream schools. Each of these supporting schools support a few mainstream schools in their area with registering children with disabilities, including through assigning special education teachers (known as resource teachers) to support children with disabilities a few hours per week and providing educational materials in different formats, for example Braille or audio books.[6]

Not all mainstream schools enroll children with disabilities. Those which do are known as “admitting” schools. In our research we were not able to identify official data on the number of “admitting” schools. In some mainstream schools located in remote or rural areas, children with disabilities are educated in separate classrooms known as annex classrooms.

Children with Disabilities in Education

During the 2018-2019 school year, more than 14 million children were registered in primary and secondary schools in Iran.[7] That same year, according to a senior Iranian official, only 150,000 children registered with disabilities were enrolled in school. There are an estimated 1.5 million school-age children with disabilities in Iran.[8]  Approximately 65,000 children with disabilities attended mainstream schools and 85,000 attended special schools.[9] 

There are no reliable official statistics on the number of out-of-school children in Iran, including children with disabilities. A 2019 report by the Iranian parliament’s research center found that different government reports estimate the total number of children out of school to be as low as 130,000 or as high as 3 million. There is no comprehensive data on children with disabilities who are out of school.[10]

A 2017 research study led by the Ministries of Social Welfare, Communication, and Education identified 130,000 children ages 5 to 11 across Iran who were out of school. In interviews with 80,000 families of these children, parents indicated that disability is the main cause of children being out of school, primarily due to lack of physical accessibility in communities.[11]

Disability rights activists have found out that children with disabilities living in remote areas and small villages, especially girls and those living in poverty, are most likely to be excluded from education.[12]

According to the CRPD, governments should collect information, including disaggregated statistical and research data disaggregated by age, sex, gender, ethnic background, and migrant, asylum seeker and refugee status to enable effective policies to implement the convention.[13]  Iranian law also requires the national census to collect data on people with disabilities, including the type of disability.[14]

II. Exclusion of Children with Disabilities from Public Education

Human Rights Watch and the Center for Human Rights in Iran identified numerous barriers for children with disabilities to access a quality, inclusive education. One major obstacle is the School Beginner Medical Assessment, a mandatory medical assessment for school enrollment that determines whether children are “educable” or not, and if they are deemed “educable,” whether they can attend mainstream school or must go to a special school only for children with disabilities.

Staff of some mainstream schools refuse to admit some children with disabilities who have passed the medical assessment. Stigma, as well as a lack of information about the right to education among parents, also result in the exclusion of many children from education. Girls with all types of disabilities, children with intellectual disabilities and autism, and children living in remote or rural areas are the most likely to be excluded.[15] 

Ahmad Medadi, a former teacher and teachers’ rights activist, described some main features of Iran’s education system:

Firstly, segregation is their main policy. They categorize children based on gender, wealth, religion, and other features, and of course disability. The system is designed to place children with disabilities in special schools with specially trained teachers. That’s why I believe the system does not systematically allow inclusiveness.[16]

Medical Assessments Determine Educational Pathways

As a prerequisite for enrollment in primary school, every 6-year-old child in Iran must undergo the mandatory School Beginner Health and Educability Assessment jointly administered by the Ministry of Health, Ministry of Education, and the Special Education Organization.

At local assessment sites, a doctor and a nurse first examine the physical health of the child. Then medical professionals assess the child’s vision, hearing, cognitive abilities, and overall health. Five professionals are involved: a medical doctor, a nurse, an optometrist, an audiologist, and a psychologist. If they believe that the child may have a disability or health condition, the child is referred to a different assessment site for a secondary assessment.[17]

The secondary assessment includes an IQ (intelligence quotient) test. Children with an IQ below 70 are considered to have intellectual disabilities. Of these, children with an IQ between 50 to 70 are deemed “educable” but must enroll in special schools.[18] Children with an IQ under 50 are considered “ineducable” and can attend no school whatsoever. They are grouped as “trainable” (IQ of 25-50) and “care-needing” (an IQ below 25). Children with autism, regardless of their IQ, who are found not to “have control over urinating and defecating functions” are also not allowed to attend any school.[19] Children with an IQ below 25 are categorized as “care-needing” and may be placed in State Welfare Organization (SWO) residential institution.[20]

In recent decades, education experts and some scientists have criticized the legitimacy and usefulness of IQ tests, arguing that they are fundamentally flawed and have contributed to discrimination on the basis of race, socioeconomic status, and disability.[21] IQ tests have been used, among other things, to claim the intellectual superiority of whites and to justify sterilization of people with developmental disabilities in the early to mid-20th century.[22]

For children with disabilities, IQ tests have been used to segregate students in special education programs, rather than including them in the general education system.[23] Additionally, academic research has shown that autism and intellectual functioning are independent of one another, and that IQ test scores are a poor indicator of intelligence of people with autism.[24]

Iran’s Special Education Organization under the Ministry of Education is responsible for the education of children considered “educable.” The State Welfare Organization is responsible for children deemed “ineducable.” Children with intellectual disabilities or autism with an IQ below 50 may access rehabilitation, education, speech therapy, and occupational therapy in SWO’s day centers and “receive preparation to join the special education system.” “Some children manage to pass the test [Educability Assessment] in subsequent years and end up doing well at school,” one SWO official in a 2018 television interview said.[25]  Upon turning 14, those children categorized as “trainable” may also join vocational training centers to learn simple skills such as carpentry, handicrafts, and gardening.

Those who pass the so-called educability threshold during the medical assessment are categorized in two main groups. Those with so-called mild needs are allowed to attend mainstream schools. This typically includes children with sensory or physical disabilities or those with learning disabilities. Children whose needs are considered to be high must attend special schools specifically for children with disabilities. This includes children with intellectual disabilities as well as children with “moderate to high emotional-behavioral issues.”[26]

Parents of children who were excluded from education described their disappointment and anger at learning their children would be denied education. For example, Sudabeh, mother of Rojin, a 7-year-old girl who is blind and has communication challenges, explained:

The day they told me that they can’t register my daughter even in special school was one of the worst days of my life. … . I want her to go to school just as all other kids go. I had purchased the school supplies for her and even prepared her school uniform, but she didn’t answer any questions in the assessment session and the man there said that she is not educable. I brought her back home, crying all the way.[27]

Human Rights Watch and the Center for Human Rights in Iran could not identify any data on the number of children with disabilities identified as “ineducable” and excluded from education. Some local advocates working with children with intellectual disabilities and children with autism confirmed that many children are left out of education as a result of the medical assessment.

One activist in Tehran who has promoted the rights of people with intellectual disabilities for over 10 years said:

Each year around the school registration season, I meet many parents whose children with intellectual disabilities are denied school registration because their IQ is below 50. They are told that their kid can be trained in life skills but is not capable of attending school, not even special school.[28]

Another activist, Mona, manages an organization for people with disabilities in a city in eastern Iran. She interviewed dozens of children with disabilities excluded from education in 2018 and 2019. She described her findings:

Some of the kids I met were denied education because they were assessed as ‘ineducable.’ But when I talked to them, I couldn’t understand how the assessors have come to such a conclusion. For example, I met a 9-year-old girl who … answered my questions well. I was really surprised when I found that she has been diagnosed ‘ineducable’ due to intellectual disability. But as far as I could see, she was communicating and understanding well and just had tremors in her body.[29]

A high-ranking official of a provincial Special Education Office described how their local offices determine placement of children with disabilities in mainstream or special schools:

Deaf and hard of hearing children often attend mainstream schools from the first grade, but for blind students we often send them to special schools for primary education to learn Braille because we don’t have the capacity to teach Braille in mainstream schools. Families can somehow influence this process. For example, if a family really insists to register their blind child in a mainstream school, we allow that. But for children with intellectual disabilities … it is very rare that we allow them to register in mainstream school.[30]

Children with autism are among those frequently excluded from education. Based on World Health Organization estimates, there should be at least 118,000 children under 15 with autism in Iran.[31] However, only 7,000 school age children were registered with autism in Iran in 2018.[32] Of these, only 2,442 attended school: 2,264 in special schools, and 178 in mainstream schools, according to the government’s official figures.[33]

Children with Disabilities Denied Enrollment in Mainstream Schools

Regulations on education require local mainstream schools to admit children with disabilities who have passed the health and educability assessment. However, Human Rights Watch and the Center for Human Rights in Iran found that some mainstream schools denied children with disabilities entry, even after a medical assessment authorized mainstream school enrollment.[34]

Some parents we interviewed described their efforts to enroll their children with disabilities in mainstream schools. Several parents had to seek enrollment at several different schools and argue with reluctant principals. In some cases, schools also required families to bring a special reference letter for their child from the local education office. In other cases, school officials forced parents to sign a waiver assuming liability for any injury or harm to their child or other children as a condition of enrollment.

Mani is a 10-year-old boy with low vision living in a town in western Iran. His mother, Mahtab, told us about the difficulties she faces registering him at school each year:

At the beginning of each school year, we have lots of back and forth between the special education office, the special school, and mainstream schools to get Mani registered. The special school tells us Mani should go to a mainstream school, but we can’t find a suitable school for him, and if we do, the principal refuses to register him.”[35]

Because of the mainstream school denials, Mani has been forced to go to special schools for three years. Mahtab said that Mani does not like the special school because there are few children in a mixed-age classroom, and he misses attending school with his peers and neighbors. She also sees that the special school does not challenge him academically.  “He is not happy in the special school and no mainstream school accepts him. All this has caused him [to] hate school. He keeps crying and telling me that he doesn’t want to go to school anymore, which is really heartbreaking for me,” Mani’s mother added.[36]

Farideh managed to register her then 7-year-old daughter, Bahar, in a primary mainstream school in May 2017. Three other schools had refused to enroll Bahar, who uses a wheelchair and has difficulties using her hands. Farideh explained:

Every school we went to, the answer was negative. They either said that their school was not suitable for Bahar because there were so many stairs or said that other kids may push her, hurting her. To me, they simply seemed to feel having Bahar at school would be a burden. Finally, I got a letter from the local education office, and one school agreed to register her. But I had to commit to carry her upstairs to the classroom and be around for any support that she might need.[37]

Later, after taking Bahar out of school for some time due to the inaccessibility, Farideh and her husband managed to register Bahar in a school with accessible wheelchair ramps for the 2018-2019 school year. However, the school is far from their home, and they pay for transportation, which is a financial burden for the family. The principal of the new school also required Farideh to sign a document releasing the school from liability for any potential harm that might happen to Bahar at school.

Other parents of children with disabilities interviewed also said that mainstream schools required them to sign a document releasing the school from liability.[38] For example, Fozieh signed a release form in order to get her 14-year-old son Hatef registered in a mainstream school near their house in a town in northern Iran. Hatef has low vision and rickets, a condition that causes softening and distortion of bones. Fozieh explained:

I went to three mainstream schools near our house but none of them admitted Hatef. After a lot of insistence, finally the principal of one school agreed to register him on the condition that I sign a document stating that the school has no legal responsibility for any kind of harm that Hatef might experience at school. That day I was desperate and had no choice but to sign. But this was really unfair. This is the duty of the school to make sure that all children are properly protected while at school and should be responsible if they fail to do so.[39]

A high-ranking official of a provincial Special Education Office stated that he is aware of many instances in which principals denied children with disabilities admission to schools. He said that in justifying their denials, “Sometimes school staff say very inappropriate things about children with disabilities to their families.”[40]

Mahrokh, who works as special education officer in a city in northern Iran, also confirmed that school principals frequently refuse to admit children with disabilities, even those deemed eligible for mainstream schools by the medical assessment. “This is on us as special education officers to find a solution. We always try to solve the problem through negotiation. Sometimes we manage to convince the school to admit the disabled child. In other instances, we find another mainstream school willing to register the child.” Mahrokh said that as a result of these denials and the lack of nearby special schools, some children with disabilities remain out of education.[41]

With regards to the obligation of mainstream school to enroll children with disabilities, in 2017 Ali Rabie, Minister of Labor and Social Welfare, was quoted in a news outlet saying, “Only children with intellectual disabilities are not able to attend mainstream schools. Other than that, school principals have the obligation to register children with physical [and sensory] disabilities.”[42] Rabie added that, if reported, “school principals who denied education to children would receive a warning for the first offense and be held accountable in case of recurrence.” He did not provide any further information on the type of punitive measures taken against principals nor the number of principals actually held accountable.

Our research did not identify any regulations stipulating penalties or disciplinary measures against school principals who refuse to register children on the basis of disability. Mahrokh, the special education officer in northern Iran, confirmed: “I am not aware of any legal penalties for principals refusing to register disabled children, and I have never heard of any principal punished for refusal.”[43]

Stigma among Parents

Disability-rights advocates interviewed across Iran confirmed that many children with disabilities do not attend school because of pervasive social stigma and stereotypical beliefs about having a child with a disability. Parents whom we interviewed said they fear the bullying of their child with disability and the bullying of their other children. Some parents fear social judgment that attributes a child’s disability to parents’ sins or faults. Some families are also concerned that some individuals will consider that families with a child with a disability might have a genetic deficiency in the family. This could impact their other children’s prospects of finding a spouse willing to marry and start a family with them.

Parental stigma particularly affects girls with disabilities living in rural or remote areas. Sudabeh, mother of Rojin, a seven-year-old girl with communication difficulties who is blind living in a small town in western Iran, said that her husband does not support her efforts to enroll Rojin in school, and wants to keep Rojin at home:

He keeps telling me that it’s not good for our son that people learn about his disabled sister because other children would make fun and call her names. He says that with her disabilities, nobody would want to marry our daughter, so why we should try to get her an education. We should just feed her and make sure that nobody abuses her. He believes that my efforts for Rojin are useless and I should accept the reality and stop wasting time and money on her.[44]

Ehsan, a disability rights advocate in a town in western Iran, said that he knows many children with disabilities in his province who are currently out of school due to stigma:

I have faced many cases that even educated parents or parents with good government jobs have failed to register their children with disabilities at school. There have been also cases that schools denied registration, referring specifically to the child’s disability, and parents have given up trying to enroll their child. I even know a family who has kind of imprisoned their daughter with an intellectual disability at home for many years.[45]

Amin has worked as teacher in special schools in different towns near Tehran for more than 10 years, and confirmed that many children with autism do not access education due to stigma:

I believe that almost one out of three children with autism never walk into any school in their lives. Many parents fear the stigma and pitiful reactions of others, so they prefer not to let their autistic children be seen in public. The worst part is that during the medical assessment some parents may be told that their child is not capable of going to school.[46]

Mona, the disability advocate quoted previously, indicated that forcing children to enroll in special schools drives some parents to keep their child with disability out of school altogether. “For some, this is because they don’t want to be known as having a child who is not able to go mainstream schools. For others, they [wrongly] believe that by going to a special school their child would learn inappropriate behavior from other children,” she said.[47]

Lack of Sufficient Information

According to activists and parents interviewed, some children with disabilities do not attend school due to the government’s failure to inform parents, government workers, and the public-at-large about the importance of education, as well as the potential and abilities of people with disabilities to learn. This is particularly the case for children with intellectual disabilities, autism, or other developmental disabilities.

Reza, who lives in a small city in western Iran with Sahand, his 13-year-old son with autism, said that even social workers from the State Welfare Organization office do not have much information about autism. “Public awareness about autism is very low in our town. Even staff of the Welfare Organization and Special Education offices know little about it. They don’t speak to parents about education of their kids and refer them to schools or services.… They don’t bother to guide us,” he said.[48] Reza said that in their city, 25 children with autism are registered with the government, but only five go to school. He said: “Most children with autism are kept at home by families and hardly seen in public.”[49]

Mona, the advocate in eastern Iran quoted previously, also confirmed that parents frequently keep their children with disabilities out of school due to fear and lack of understanding. She said, “My colleagues and I have done a lot of research on this, and I can tell you that a strong majority of children with disabilities, I can even claim 90 percent, are not attending school. I have talked to many kids between 7 to 18 who have never gone to school because families were not aware that they could be educated.”[50]

Public national radio and television channels are the most widely available source of information for many families, even in rural and remote areas. If properly managed, these channels could play an essential role in raising public awareness about disability and combatting stigma and misconceptions about children with disabilities, including in education.

According to parents interviewed, the programs broadcast about children with disabilities are infrequent and mostly focused on drawing public empathy or charity, often viewing disability from a moral or religious lens. For example, Reza said:

A few times a year, they broadcast an interview with family of a kid with autism talking about barriers they face, or with a psychologist enumerating warning signs of autism and what parents can do to get early diagnosis and start therapies. I personally have not seen any program or short ad specifically informing parents about education options and facilities available for children with autism, nor I have heard [of] such program being broadcasted.[51]

III. Inaccessibility and Lack of Reasonable Accommodation in Schools

I really want to support students with disabilities in my class. But it’s just me and 30 to 35 students, 90 minutes’ class time, and a challenging curriculum to teach. Schools in Iran are generally very poorly equipped to fulfill any needs. We even lack suitable tables for left-handed students. With limited facilities and no training for me as a teacher, I am not able to do much. I must allocate my time fairly to all my students and at the same time show an acceptable class record to school principals at the end of the year.

—Ghasem, a teacher in a mainstream boys’ high school, Tehran, May 20, 2017

Human Rights Watch and the Center for Human Rights in Iran found that children with disabilities enrolled in mainstream and special schools face various barriers accessing a quality education. Barriers include inaccessible buildings, classrooms, and toilets; a lack of sufficiently trained and qualified staff to teach children with disabilities; and/or the lack of aides and other reasonable accommodations.

Inaccessibility and lack of reasonable accommodations in schools may mean that parents attend school with their children in order to move them around the school or provide other support. These barriers may also force some children with disabilities to drop out of school, to enroll in a school far from home, or even be forced to attend a residential special school, living separated from their parents, often for many months at a time. 

The CRPD requires the government to provide reasonable accommodations, or the “necessary and appropriate modification and adjustments, not imposing a disproportionate or undue burden, where needed in a particular case,” to ensure people with disabilities access education on an equal basis with others at all education levels. The denial of reasonable accommodations constitutes discrimination.

Under the CRPD, Iran is also obliged to ensure that schools are accessible to students with disabilities.[52] Facilities should be physically accessible to students, as should the education schools offer. This includes, for example, teaching materials and methods accessible to students who are blind or have hearing disabilities.[53] Iran is obliged to develop accessibility standards for the design of new facilities, products, and services and to take gradual measures to make existing facilities accessible.[54]

Lack of Sufficient Support in Classrooms

The Iranian educational system has an insufficient number of teachers overall. According to the Ministry of Education, in 2018 there was one teacher per 35 students in Iran. The student-teacher ratio is worsening, with many teachers scheduled to retire within the next few years.[55] In 2018, 23,000 special education teachers, the only educators trained in teaching children with disabilities, supported 150,000 children registered with disabilities in special and mainstream schools.[56]

Iran has a system of placing resource teachers, who are trained as special educators, in mainstream classrooms to provide individual academic support to children with disabilities. However, the government openly acknowledges that there are insufficient numbers of resource teachers available. According to a senior Special Education Organization official, referring to the situation in 2016 in mainstream schools:

The Special Education Organization is facing a huge gap in the provision of adequate numbers of resource teachers. Only 364 resource teachers are available to provide education support to 48,837 students with disabilities.[57]

This is a ratio of 134 students per resource teacher.

Ministry of Education standards stipulate four hours of support per week per student in mainstream schools on average. Thus, a single resource teacher can only support 11 students a week within their 44-hour workweek. This means that only about 4,000 students with disabilities in mainstream schools receive support from resource teachers; those that do may only receive four hours per week, which may not be sufficient to support their academic achievement.

Ahmad has worked for a few years as a resource teacher for blind students in a major city in southern Iran. He described his experience: “I am a resource teacher for 10 blind and visually impaired students attending three different schools in different areas of the city. I have to split my time in a way to allocate four hours to each student [per week].”[58]

Sahar, a 17-year-old high school student who is blind and attending a mainstream school, shared her experience with resource teachers:

“Last year, my resource teacher changed three times. The first one didn’t allow me to record her voice and said that she would read the books to me and I should learn that way. Then she left, and they sent me another [resource] teacher who was great, very knowledgeable and supportive. But she retired, so I had a third one for the last few weeks. This one said that I didn’t need to go to class and it would be better to sit with her. But I didn’t want to miss the classes.”[59]

Parents Required to Support their Children at School

According to disability rights activists, parents, and media interviews quoting government officials, schools in Iran, including special schools, are mostly inaccessible for children with physical disabilities, particularly those who use wheelchairs. Many have stairs at the entrance and inside, and no ramps, elevators, or wheelchair lifts. Toilets are inaccessible, often partly because of a lack of commodes that allow a person to sit down, which is a common problem in public buildings in Iran. Due to the lack of aides in school to support children in this environment, parents described how they felt they had no choice but to spend all day at school or pay frequent visits during the day to move their children with disabilities around in the school, including carrying them up and down the stairs, or help them use the bathroom.

For three years, Najmeh made herself available every day to help her 9-year-old daughter Shabnam use the inaccessible bathroom at school. She said that sometimes school staff even failed to help Shabnam call her mother to take her to the bathroom. “Her legs do not bend, so I have to hold her in my arms above the toilet. They suggested that I put her in diapers, but Shabnam does not accept diapers at all,” Najmeh explained. “School staff didn’t allow me to wait inside the school. So, I waited outside [in my car]. Last year, Shabnam’s father got sick, and I had to take care of him, too. Because of that, sometimes I couldn’t come to the school, and Shabnam had to spend the day without relieving herself,” she said.[60]

Najmeh had to give up taking Shabnam to school and decided to educate her at home for the 2018-2019 school year. “I realized I can’t do this anymore,” she said. “We had to sell our car, and so now I can’t get to the school two to three times a day. I have other kids and other responsibilities. So, I will teach her myself with help of her older brother. I might also hire a private teacher for math lessons.”[61]

Ghasem has been teaching in different boys’ high schools in Tehran for almost 20 years. He remembers a boy who used a wheelchair whose mother and school custodians helped carry him up the school stairs each day when he arrived at school. “He had to spend all day in the classroom, including during the break or exercise time. He didn’t drink or eat at school, so that he wouldn’t have to use the toilet. If he needed to, then he had to call his mother and get her to come help him. I could see in his face how disappointed and shameful he felt,” Ghasem said.[62]

In some cases, school directors refused to move the classroom from the upper floors to the ground floor to accommodate a student with physical disability. For example, Farideh told us that she had to carry her 7-year-old daughter Bahar, who uses a wheelchair, up and down stairs in the local school. According to Farideh:

Bahar’s classroom was on the second floor, up 10 stairs. There were classrooms available in the ground floor, but the school managers said that they were allocated for third grade students. So, every day, I had to carry Bahar and then her wheelchair up and down the stairs. This happened a few times a day because I didn’t want her to stay alone in class while other children were in the yard for recess.[63]

Farideh developed serious back problems from carrying her daughter and a heavy wheelchair up and down the school stairs a few times a day. With no other option, she withdrew her daughter from school: “My doctor said that I should immediately stop carrying heavy loads and start physiotherapy. So Bahar could not finish school last year. This year, [2018-2019 academic year], I found a school with ramps. But the new school is far from our house, and we have to pay for expensive transportation” she said.[64]

Physical inaccessibility of schools is a general problem, according to government officials and non-governmental activists. For example, Mohammad Ali Afshari, head of the Board of Directors of Hamedan Society for Disabled Persons—a leading disabled persons organization in Hamedan province in western Iran—said in a media interview that he was not aware of a single school in the province that is physically accessible.[65]

Children in Residential Special Schools

There are 28 residential special schools in Iran where most children with disabilities in rural areas may end up due to lack of accessibility in the community or lack of accessibility and reasonable accommodation in local mainstream schools.[66] In some cases, added costs of accessing local mainstream schools have compelled some children to attend residential schools.

In addition to accessibility and reasonable accommodations, Iran should provide compulsory, free primary and secondary education to all children on an equal basis, including through financial assistance for those in need.[67] Children and families should not pay additional costs to reach school or to secure reasonable accommodations in school.

For example, Sahar and her sister, both blind, attended a residential special school for one year. “We moved to a new city where the special school was far from our house. The school did not offer transportation to our neighborhood, and my father said that he couldn’t give us a ride to school, nor could he afford taxi fees. So, we had to stay in the dormitory.”[68] 

Sahar described her boarding school experience in a sad tone:

It was really difficult. It took me two months to start communicating with people. In the first week, I cried all the time and didn’t say anything but my name. My sister was younger, and it was even more difficult for her. My friends often saw her crying when I was not around.

Sahar and her sister faced difficulties remaining in contact with their family:

Cell phones were not allowed in the dormitory. There was a public phone, but you needed to purchase a prepaid card to use it. We didn’t have a card and there was nobody to buy one for us. Of course, we were not allowed to leave the dormitory unless our parents came to pick us up. So, weeks went by with us unable to talk to our family.[69]

Limited Efforts to Improve Physical Accessibility

The government’s efforts to improve physical accessibility in schools have not consistently met the actual needs of people with disabilities. The national Schools Renovation Organization (SRO) under the Ministry of Education and its provincial offices are responsible for monitoring and implementing any school construction or renovations.

According to government regulations, any newly built or renovated school must meet accessibility requirements including elimination of hazards, adjustment of blackboards to be visible to children sitting in wheelchairs, and making school hallways, entrances and bathrooms accessible including by installing ramps. The SRO must ensure that at least three schools are made physically accessible in each education district under the “plan to extend barrier-free schools.”[70]

We did not identify any government data on the number of new schools built in compliance with the official accessibility standards, nor on the measures that would be prescribed in case of failure to meet these standards.

Ehsan, a man with a physical disability living in a small town in western Iran, said that the single special school in his town – where students with all types of disabilities enroll – is not physically accessible. “Once they built an entrance ramp, but it was too steep and useless,” he added.[71]

In another case, Ahmad, who is blind and has worked in several mainstream schools as a resource teacher, said, “When the authorities specify a certain school as an admitting school in big cities, they try to pick those which have better physical accessibility. In two out of the three schools where I work, officials had installed ramps to make entrances accessible for wheelchairs. Unfortunately, the ramps were too steep and students who use wheelchairs told me they had difficulty using these ramps independently.”[72]

Obstacles for Children Who Are Blind and Have Low Vision

Many blind students in Iran enroll in mainstream schools, but they face many barriers to accessing a quality education. These include a lack of or low quality of education material in alternative formats, little opportunity to choose the preferred format of material, and inadequate support from school staff and teachers.

According to our research, teachers in Iran primarily rely on the remaining eyesight of children who have low vision by using larger fonts rather than teaching them to read Braille. This risks their future education and literacy should they lose their eyesight and are no longer able to use large font materials. In addition, Amin, an experienced special education teacher, explained, “This may cause extra pressure on children and sometimes damage their eyesight. Teachers may also fail to work on improving touch capabilities of younger children which can make it difficult for them to read Braille with their fingers if they wish to do so in future.”[73]

Blind children also face multiple barriers accessing quality educational material. Students and teachers interviewed said that both audio and braille textbooks often arrived late, incomplete, outdated, and are of low production quality.

Sahar and Nadia, two high school students who are blind, said that the content of standard textbooks is often updated, and had to rely on outdated audio or Braille versions of textbooks. Sometimes changes were so significant that they found the old audiobooks useless or even confusing. Sahar explained that in one recent school year her audiobooks arrived late. “I got some Braille books in the third month of the school year, and some more halfway during the year. The second volume of some books never reached me.”[74]

For students who are blind, books are provided either in Braille or as audio books. Children who are blind should be able to choose the book format most accessible and preferable to them, although schools in Iran do not always ensure a choice. Sahar said that she cannot read the Braille format of some textbooks. She explained, “I can’t read Braille contractions [short form of words to save space and reading time] in English, so even if I get those textbooks, I would still have difficulties. I requested to get an English textbook in ordinary Braille type instead of contraction form, but the local Special Education Office said it was impossible.”[75]

Ahmad, a teacher experienced in teaching students who are blind, explained that since producing Braille books is more expensive, the Special Education Organization produces them only for subjects for which a book is required in the classroom, such as math, literature, Arabic, or English language. For history, science, geography, and other subjects for which books are not considered essential for classroom learning, schools provide only audio books, which the student can listen to at home.[76]

Obstacles for Deaf and Hard of Hearing Students

Many children who are deaf or hard of hearing attend mainstream schools in Iran but do not receive sufficient support to achieve their academic potential. The CRPD requires States Parties to facilitate the learning of sign language and the promotion of the linguistic identity of the deaf community. Education of deaf children should be delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development.[77]

Iranian sign language is not part of the school curricula for deaf children. School subjects are taught in Farsi only, not in Iranian sign language.[78] Children who are deaf or hard of hearing should receive education in both Iranian sign language, which allows them to communicate easily with others, and Farsi, to ensure they can read and write.

Our research found that Iran’s education system discourages learning and usage of sign language for deaf and hard of hearing children. Sirous, a senior official in a Special Education provincial office, said that the main method of teaching children who are hard of hearing is based on improving the remainder of the child’s hearing: “We use what is called auditory verbal therapy which means that we try to make the child to use his remaining hearing abilities. In this method, the therapists or teachers even cover their lips so that the child can’t read lips and has no choice but to use his hearing.”[79] Mohsen Ghafoorian, deputy director of the Special Education Organization, acknowledged in a 2017 interview that teachers are instructed not to use sign language for dictation exercises for deaf children.[80]

Behdad is a 14-year-old boy who is hard of hearing and attends a mainstream school in a city in eastern Iran. In a written interview with the researcher, he explained some of the barriers he faces at school. Behdad does not receive speech therapy or support in developing lip-reading skills. He relies on his limited hearing and the skills he has developed himself to read lips. He said:

There are 36 children in my class, so the teacher is very busy and does not have time for me. None of my teachers know any word in sign language, and there is no one there to interpret. I sit in the front row and try to read their lips, but sometimes they turn their backs to me when writing on the board and then I can’t understand anything. I love my school, but when I can’t speak easily to my teachers and classmates, and when I see other boys making fun of me, I wish to go to special school. At least people would understand me there.[81]

Sign language is available in special schools for children who are deaf; however, as with all special schools, children are segregated from the community and isolated from their peers. A child should be not compelled to go to a special school due to the failure of a mainstream school to provide reasonable accommodations, such as sign language. For children who use sign language and attend mainstream schools where there may not be any or many other children who are deaf, schools can promote access to deaf culture and interaction between deaf children by cooperating with municipalities, other schools, and organizations of persons with disabilities.

Keyan, a 15-year-old boy who is hard of hearing, attends a special school for deaf boys but wishes to go to mainstream school. He explained, “Everyone speaks in sign language in my school, my teachers and all my classmates. But I would like to go to the same school as my brother. I want to make friends with hearing children as well.”[82]

Teachers in mainstream schools we interviewed confirmed that they have not received training in identifying or teaching deaf or hard of hearing students. Ghasem, a mainstream high school teacher said that once he found out that one of his students is hard of hearing only in the middle of the school year:

I noticed that he was not reacting properly when I asked him questions, and he was doing very poor in math. So, I called his parents, and it was only then that I learnt he has difficulty hearing. He had hearing aids, but he didn’t use them at school because he feared being teased by other children. Since then I’ve tried to help him more by making sure that he sits in the front row and can read my lips. I tried my best, but he was still behind in his classwork. I wish I knew what else I could do.[83]

Insufficient Teacher Training

Iran is not yet doing enough to ensure quality, regular training of teachers in inclusive education. Instead of mainstreaming inclusive education methods and principles in all teacher curricula at universities, special education teaching is offered as a separate program at some universities. Therefore, new teachers are either trained as special education teachers or as mainstream teachers without the skills and knowledge required for inclusive education. The Special Education Organization will employ graduates of these programs as teachers in special schools. Since the number of teachers needed is more than these graduates, the Special Education Organization also employs people as teachers who have not received teaching training.

In a 2016 news interview, Mohsen Ghafoorian, deputy director of Special Education Organization, said:

It is not feasible for us to train all teachers; we neither have the time nor the resources to do so. So, we started with revising the curricula in Farhangian University where future teachers are trained to include more disability-related material. For current teachers, instead of organizing training sessions and workshops, we have prepared training materials such as DVDs, so the teachers would have the opportunity to watch this training and ask their questions.[84]

None of the 10 teachers from different parts of the country interviewed for this research had received or heard of such DVDs. One education officer of the Special Education Office told us that even if the DVDs reach the teachers, there is no mechanism to ensure that the teachers have really watched and absorbed the trainings.[85]

Mainstream School Teacher Training

Our research found that many teachers working in mainstream schools have not received meaningful training on inclusive education methods or training on how to teach children with different disabilities. Shamsi and Ghasem, two mainstream teachers we interviewed, emphasized that the periodic mandatory professional trainings provided by the Ministry of Education do not include any information on disability inclusive teaching methods.[86]

Ahmad was working as a resource teacher for blind students in a mainstream school, when he learned that he had to teach a blind boy with autism. He described the situation:

It was the first day of the school year and I received a list of students in my class. Then the education manager told me that one of the boys in my class had autism. I was really surprised. I had heard and read a bit about autism but had no idea about teaching a child with autism. I told the director that I was not prepared, but he said that I should take it easy, and that I had priority over other teachers because I knew Braille. But teaching Braille to a child with autism was different from teaching Braille to other students. The day I went to teach him was the first day in my life I met a child with autism. Anything I did to teach him was solely based on my own research, trial and error.[87]

Sahar, a girl who is blind, spent the first five years of her education in a special school for the blind and enrolled in a mainstream school in sixth grade. She described how the teacher was not prepared to support her inclusive education. “In the first semester in mainstream school, the teacher kept telling me that she had no idea what to do with me. I couldn’t learn anything, so my school marks dropped off a lot,” Sahar explained.[88]

In some cases, school staff refrain from registering children with disabilities due to the lack of training capacity for teachers. Ghasem, a mainstream high school teacher, said that staff once refused to admit a blind high schooler in the school where he worked:

We had no idea how to teach him. As a math teacher, I don’t know how to explain math to a blind child. I use the board a lot in class, but a blind student can’t see that. So I think it was better for both that child and the school staff not to have him in in these circumstances.[89]

Special School Teacher Training

Our research also found that even in special schools, where teachers should be specialists in teaching children with disabilities, teachers also do not receive regular or sufficient training on disability-inclusive teaching methods and some teachers have no training whatsoever to educate children with disabilities. Special school teachers interviewed described the training offered to them by the Special Education Organization of the Ministry of Education as inadequate, irrelevant, and trivial.[90] 

Ahmad, who works as a resource teacher, said, “When I first started my job, [the Ministry of Education] gave me a general training on teaching skills which did not include much detail. They do organize some training workshops to update special education teachers and retrain them, but I have never been invited to any.” Ahmad also said he did not receive enough support in his job. “When they assign you to teach a class, you will be on your own. All other teachers in the school are as busy as you are, so you should not expect support from anyone.”[91] 

Amin, a special school teacher with experience teaching children with different disabilities said that professional development courses are only offered for teaching methods for deaf students and students with intellectual disabilities, and that he is not aware of any training available for teachers teaching children with other types of disabilities.[92]

In some cases, Special Education Offices assign teachers to special schools who have not even received training in teaching children with disabilities. Zohreh, who works in school for girls with intellectual disabilities, said:

It happens a lot that they assign someone to teach in our school who is specialized in something quite irrelevant. For example, once they sent a young woman who had just graduated from university with a degree in Persian literature to teach kids with intellectual disabilities, without providing any additional training to her.[93]

Karim, also a special school teacher, said that he has seen philosophy, mathematics, theology, and civil engineering graduates being assigned to teach primary school children with disabilities in mainstream and special schools without proper training. “Except those specifically educated in teaching kids with disabilities, no one else can be really helpful in our school. Even an education management graduate is not a suitable teacher because they do not learn about teaching methods needed here,” he said.[94]

IV. National and International Legal Obligations: Access to Education

National Laws and Policies

The Iranian Constitution guarantees free education for all through the secondary level.[95] The 2016 Charter on Citizenry Rights provides that persons with disabilities “must enjoy education and opportunities to develop their skills consistent with their capabilities, and no one should be deprived of the opportunity to acquire knowledge or job skills due to their disabilities.”[96] The government’s education regulations also commit to make the mainstream education content and school environment accessible for students with disabilities. Those who register in mainstream schools should receive support from resource teachers and have access to necessary rehabilitation services.[97]

However, there is no legal guarantee of every child’s right to access inclusive education.  The 2015 Comprehensive Plan to Protect Disability Rights stipulates that students with “severe learning, intellectual or multiple disabilities and any students who, according to the assessment of the experts from the Special Education Organization,” are “not able to study in regular educational environments” will be placed in segregated “special government educational centers.”[98]

International Standards

Inclusive and Quality Education

The CRPD Committee calls inclusive education “a fundamental right of all learners.”[99] Inclusive education is the practice of educating children with disabilities in mainstream schools in their neighborhood with the provision of supplementary aids and services where necessary, to allow children to achieve their full potential. The CRPD requires states to make education inclusive at all levels.[100]

As detailed by the CRPD Committee, inclusive education has been acknowledged as the most appropriate means for governments to guarantee universality and nondiscrimination in the right to education. An inclusive education system should focus on the full and effective participation, accessibility, attendance, and achievement of all students, especially those who are at risk of being excluded or marginalized.[101] The education system should provide an individualized educational response, rather than expecting the student to fit the system.[102]

Inclusion is different from segregation, where children with disabilities are placed in educational institutions that are separate from the mainstream education system, such as special schools, or in separate classrooms in mainstream schools. Inclusion is also different from integration of children with disabilities, where children are placed in mainstream schools so long as they can fit in these schools and meet their demands.

Accessibility

The CRPD Committee also notes that the realization of the right to education requires that the entire education system be accessible, including buildings, information and communication, curriculum, education materials, teaching methods, assessment and language and support services, transportation, water, hygiene and toilet facilities, school cafeterias, and recreational spaces. The Committee calls on states to establish a clear time frame for all existing education environments to be rendered accessible and to “prohibit and sanction the building of any future education infrastructures that are inaccessible.”[103]

Reasonable Accommodation

To realize the right to inclusive education, the CRPD requires that states ensure “reasonable accommodation.” “Reasonable accommodation” is defined as the “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case” that would ensure people with disabilities the enjoyment of all human rights and freedoms on an equal basis with others.[104] A government’s obligation to provide reasonable accommodation is “enforceable from the moment an individual with an impairment needs it in a given situation… in order to enjoy her or his rights on an equal basis in a particular context.”[105]

The government should provide reasonable accommodations to support individual learning. This can include assistive devices, such as hearing aids; braille textbooks, audio, video, and easy-to-read learning materials; instruction in sign language for children with hearing disabilities; structural modifications to schools, such as ramps for children in wheelchairs; and qualified learning support assistants, either shared or on a one-to-one basis, depending on the requirements of the student, to assist children with note-taking, self-care, behavior, or other support.[106]

Provision of non-material accommodations, such as changing the location of a class, allowing a student more time, reducing levels of background noise, alternative evaluation methods, or replacing an element of curriculum by an alternative element should also be considered.[107]

State parties also have an obligation to ensure that education of people with disabilities, especially those who are deaf and blind, is provided “in the most appropriate languages and modes and means of communication for the individual,”[108] and to promote the availability and use of assistive devices.[109] The CRPD Committee has noted different students with the same disability may require different accommodations.

An important part of ensuring reasonable accommodation is training teachers, school administrators, and education officials in methods to support persons with disabilities. Training should include “disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities.”[110] 

Assessing the “reasonableness” of accommodations involves an analysis of the relevance and the effectiveness of the accommodation and the expected goal of countering discrimination. While the CRPD Committee acknowledges that availability of resources and financial implications should be considered when assessing whether provision of a certain accommodation poses a disproportionate burden, using the lack of resources and financial crises as justification for failure to make progress towards inclusive education violates the right to education.[111]

Quality

Beyond their accessibility obligations, governments need to ensure that the form and substance of education, including curricula and teaching methods, are of “good quality” and meet minimum education standards. The aim is to ensure that “no child leaves school without being equipped to face the challenges that he or she can expect to be confronted with in life.”[112] According to the UN Committee on the Rights of the Child, an education of good quality “requires a focus on the quality of the learning environment, of teaching and learning processes and materials, and of learning outputs.”[113] The system should establish high expectations for all learners, without discrimination.[114]

Nondiscrimination

International law prohibits discrimination on the basis of disability, which is defined under the CRPD as any “distinction, exclusion or restriction… which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms.”[115] In terms of education, the CRPD requires that “people with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability.”[116] This obligation of nondiscrimination applies to both public and private actors, and at all levels of education, including higher education and vocational training.[117]

Acknowledgements

This report was researched and written by a Persian-speaking researcher who remains anonymous for security reasons. The researcher worked jointly with the Disability Rights Division and Middle East and North Africa Division of Human Rights Watch and with the Center for Human Rights in Iran during the research process and was working full-time with the Center for Human Rights in Iran while writing the report.

At Human Rights Watch: Jane Buchanan, deputy director in the Disability Rights Division, edited the report. Michael Page, deputy director of the Middle East and North Africa Division, Tara Sepehri Far, Iran researcher, and Elin Martinez, senior researcher in Children Rights Division, reviewed the report. Danielle Haas, senior editor in the Program Office, provided program review. Clive Baldwin, senior legal advisor, provided legal review. Diana Naoum, coordinator, and another associate in the Middle East and North Africa Division of Human Rights Watch provided editorial and production assistance. The report was prepared for publication by Fitzroy Hopkins, production manager.

At the Center for Human Rights in Iran: Hadi Ghaemi, executive director, Omid Memarian, deputy director, and Karen Kramer, director of publications, reviewed the report for the Center for Human Rights in Iran. The disability rights associate assisted with finding cover photos and proof-reading.

We are grateful to the individuals who shared their personal stories, as well as the service providers and disability rights advocates who agreed to be interviewed. Many of those interviewed also dedicated their time and passion to connect us to other interviewees. They did so knowing that we are not able to acknowledge them each individually, due to security considerations. We are additionally thankful for their efforts, given the challenges of doing the interviews remotely due to our lack of access to Iran.

 

 

[1] “Iran: Harsh Sentence for Rights Lawyer Threatens Activism,” Human Rights Watch and Center for Human Rights in Iran news release, May 20, 2019, https://www.hrw.org/news/2019/03/20/iran-harsh-sentence-rights-lawyer-th...

[2] Education System Iran, Nuffic (Dutch Organization for Internationalization of Education) version 3, August 2015, https://www.nuffic.nl/en/publications/education-system-iran/  (accessed September 1, 2017).

[3] The organization was established in 1990 upon adoption of the Islamic Consultative assembly (the parliament) and has an independent budget, human resources, and administrative mechanism. Law Establishing Special Education Organization (قانون تشکیل سازمان آموزش و پرورش استثنایی)، December 12, 1990, https://rc.majlis.ir/fa/law/show/91853 (accessed February 7, 2017).

[4] Constitution of the Special Education Organization, adopted by the Islamic Consultative Assembly (Parliament), August 20, 1991, https://rc.majlis.ir/fa/law/show/91925.

[5] Majid Ghadami, head of the National Special Education Organization, as quoted in Mehr News Agency, November 12, 2018, https://www.mehrnews.com/news/4455643/ (accessed August 14, 2019).

[6] Mohsen Ghafoorian, Education Planning and Rehabilitation director of the Special Education Organization, addressing a news meeting, as reported by Tasnim News Agency, October 25, 2017, https://www.tasnimnews.com/fa/news/1396/08/03/1555770/ (accessed September 18, 2018).

[7] Seyed Mohammad Bathaie, Minister of Education: “More than 14 million students in current academic year,” (بیش از 14 میلیون دانشآموز در سال تحصیلی جدید)، Islamic Republic of Iran News Network, September 10, 2018, http://www.irinn.ir/fa/news/625069/ (accessed May 14, 2019).

[8] According to World Health Organization, 10-15 percent of world’s population live with some disability. Applying this estimate to Iran, we calculated a conservative estimate of 1.5 million of the 15 million children in the country are children with disabilities.

[9] Majid Ghadami, head of Special Education Organization, Islamic Republic News Agency (IRNA), September 11, 2018, http://www.irna.ir/zanjan/fa/News/83030560 (accessed May 14, 2019).

[10] Report on the Situation of Exclusion from Education and Illiteracy in Iran’s Education System, Islamic Parliament Research Center Of The Islamic Republic of Iran, March 18, 2019, http://rc.majlis.ir/fa/news/show/1123823 (accessed May 14, 2019).

[11] The findings are not exhaustive; the project is ongoing. It includes children without birth certificates. Ahmad Meidari, deputy to the Minister of Social Welfare, as quoted in Iran Newspaper, December 23, 2018, http://www.magiran.com/npview.asp?ID=3846663 (accessed May 14, 2019).

[12] Researcher interviews with Mona, disability rights advocate, in a city in eastern Iran, August 7, 2018; with Ehsan, disability rights advocate, in a town in western Iran, August 6, 2018; and with Peiman, disability rights advocate, a city in western Iran, August 8, 2018. Zuraidah Don, Ali Salami & Amir Ghajarieh, “Voices of Girls with Disabilities in Rural Iran,” Disability & Society, 30:6, 805-819, (2015), accessed September 8, 2017, DOI:  10.1080/09687599.2015.1052042.

[13] United Nations Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res 61//106, entered into force May 3, 2008, ratified by Iran in 2009, art. 31.

[14] Law to Protect the Rights of the Disabled (قانون حمایت از حقوق معلولان), adopted by Islamic Consultative Assembly March 11, 2018, published in the official Gazette No. 21303, May 3, 2018, http://www.rooznamehrasmi.ir/Laws/ShowLaw.aspx?Code=16936.

[15] Researcher interviews with Pooya, disability rights advocate, Tehran, May 24, 2019; with Nasim, advocate for persons with intellectual disabilities, Tehran, August 10, 2018; with Mona, disability rights advocate, a city in eastern Iran, August 7, 2018; and with Ehsan, disability rights advocate, a town in western Iran, August 6, 2018.

[16] Researcher interview with Ahmad Medadi (real name), former teacher and teachers’ rights activist currently living in Washington DC, August 8, 2018.

[17] Directive on the Implementation of Physical Health and Educability Assessment of Primary School Beginners, (دستورالعمل اجرایی طرح سنجش سلامت جسمانی و آمادگی تحصیلی نوآموزان بدو ورود به دبستان) 1394 (2015) Directive No. 29056, Ministry of Education of Iran, May 13, 2015, http://phc.mui.ac.ir/sites/phc.mui.ac.ir/files/docs/dastooramal sanjesh 94- 95[1].pdf (accessed August 28, 2017).

[18] Special Education Organization “Definitions and Terms” (تعاریف و واژه‌ها)، 1391 (2012), http://csdeo.ir/uploads/تعاریف_و_واژه_ها_سازمان_آموزش_و_پرورش_استثنایی.pdf (accessed July 28, 2017) and researcher interview with Jafar, March 31, 2017.

[19] Executive ٍRrules on Registering Special Students, adopted by Special Education Organization, with special needs (شیوه‌نامه ثبت‌نام دا‌نش‌‌آموزان استثنایی) http://a.csdeo.ir/uploads/7.pdf, Article 14.

[20] Hosein Nahvinezhad, rehabilitation director of the State Welfare Organization, Islamic Republic News Agency, November 12, 2017, http://www.irna.ir/fa/News/82727102 (accessed May 15, 2019).

[21] Korchin, S. J., “Clinical psychology and minority problems,” American Psychologist, 1980, 35(3), 262; Padilla, A. M., & Medina, A. (1996), “Cross-cultural sensitivity in assessment: Using tests in culturally appropriate ways,” in Suzuki, L. A., Meller, P. J., & Ponterotto, J. G., Eds., Handbook of multicultural assessment: Clinical, psychological, and educational applications, 1996, San Francisco, CA and Jossey-Bass, et al.,  “Disproportionality in Special Needs Education in England” The Journal of Special Education, 2008, Vol. 42, No. 1, pp. 36-46.

[22] Reddy, Ajitha, “The Eugenic Origins of IQ Testing: Implications for Post-Atkins Litigaion,” DePaul Law Review 57 (2008), pp. 667–1093.

[23] Morison, P., White, S. H., Fever, M. J., Eds., “The use of IQ tests in special education decision making and planning,” 1996, Washington, DC: National Academy Press.

[24] Estes, A., Rivera, V., Bryan, M., Cali, P., & Dawson, G., “Discrepancies between academic achievement and intellectual ability in higher-functioning school-aged children with autism spectrum disorder,” Journal of Autism and Developmental Disorders, 2011, 41(8), 1044-1052, DOI: 1007/s10803-010-1127-3; Hoekstra, R. A., Happé, F., Baron‐Cohen, S., & Ronald, A., “Limited genetic covariance between autistic traits and intelligence: findings from a longitudinal twin study,” American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 2010, 153(5), pp. 994-1007; Grondhuis, Sabrina N. et al., “Differences in Verbal and Nonverbal IQ Test Scores in Children with Autism Spectrum Disorder,” Research in Autism Spectrum Disorders 49 (2018): pp. 47–55; and Bardikoff, N., and McGonigle-Chalmers, M., “Testing Nonverbal IQ in Children with Autism Spectrum Disorders.” Research in Autism Spectrum Disorders 8.9 (2014): pp. 1200–1207.

[25] Quoted from a program Education Channel of government television, Mehr News Agency,  April 14, 2018, https://www.mehrnews.com/news/4270425/ (accessed May 15, 2019).

[26] Executive ٍRrules on Registering Special Students, adopted by Special Education Organization, with special needs (شیوه‌نامه ثبت‌نام دا‌نش‌‌آموزان استثنایی) http://a.csdeo.ir/uploads/7.pdf, Article 14.

[27] Researcher interview with Sudabeh, small town in western Iran, August 7, 2018

[28] Researcher interview with Nasim, advocate for persons with intellectual disabilities, Tehran, August 10, 2018.

[29] Researcher interview with Mona, disability rights advocate, a city in eastern Iran, August 7, 2018.

[30] Researcher interview with Sirous, education planning office in Special Education office in a central province of Iran, May 10, 2018.

[31] Based on World Health Organization estimates of rates of autism and official Iranian government data on the numbers of children under 15. World Health Organization, Factsheet on Autism Spectrum Disorders, April 4, 2017, http://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders (accessed September 10, 2018). The National Management and Planning Organization, analyzing outcomes of the 2016 National Public Census on Individuals and Housing, November 2017, https://www.mporg.ir/FileSystem/View/File.aspx?FileId=e11f9244-a361-4698... (accessed October 10, 2018). This analysis categorizes individuals into four main groups: 0 to 14, 15 to 29, and older groups. There is no data superficially for statistics for children under 18.

[32] Fars News Agency, September 1, 2018, https://www.farsnews.com/news/13970610000703/ (accessed September 10, 2018).

[33] Monireh Azizi, Education director of SEO, on the Occasion of Autism Awareness day, Iranian Students News Agency (ISNA), April 14, 2019, https://www.isna.ir/news/98012409797/ (accessed May 24, 2019).

[34] Researcher interviews with Keivan, 21-year-old blind man recently who graduated from mainstream schools, May 12, 2017; with Farideh, Alborz province, May 24, 2017; with Mahtab, a town in western Iran, May 24, 2017; and with Fozieh, a town in northern Iran, May 24, 2017.

[35] Researcher interview with Mahtab, a town in western Iran, May 24, 2017.

[36] Ibid.

[37] Researcher interview with Farideh, Alborz province, May 24, 2017.

[38] Researcher interviews with Fozieh, a town in northern Iran, May 24, 2017; and with Farideh, Alborz province, September 15, 2018.

[39] Researcher interview with Fozieh.

[40] Researcher interview with Sirous, May 10, 2018.

[41] Researcher interviews with Mahrokh, Special Education Officer, a city in northern Iran, May 10, 2017 and May 22, 2019.

[42] Young Journalists Club news outlet, December 11, 2017, https://www.yjc.ir/fa/news/6354370/ (accessed May 22, 2019).

[43] Ibid.

[44] Researcher interview with Sudabeh, small town in western Iran, August 7, 2018.

[45] Researcher interview with Ehsan, a town in western Iran, August 6, 2018.

[46] Researcher interview with Amin, teacher working in a special school for boys, Tehran suburbs, June 8, 2017.

[47] Ibid.

[48] Researcher interview with Reza, a small city in western Iran, May 23, 2019.

[49] Ibid.

[50] Researcher interview with Mona, disability rights advocate, a city in eastern Iran, August 7, 2018.

[51] Researcher interview with Reza, a small city in western Iran, May 23, 2019.

[52] CRPD, art. 9.

[53] UN Committee on the Rights of Persons with Disabilities, “General Comment No. 4 (2016) Article 24: Right to inclusive education,” CRPD/C/GC/4 (2016), http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx? symbolno=CRPD/C/GC/4&Lang=en (accessed January 16, 2017), paras. 13-26.

[54] Ibid., para. 24.

[55] Interview broadcast by the Education Channel, Islamic Republic of Iran television, reported by Tasnim News Agency, July 7, 2018, https://www.tasnimnews.com/fa/news/1397/04/16/1769765/ (accessed September 21, 2018).

[56] Majid Ghadami, head of the Special Education Organization, Mehr News Agency, November 12, 2018, https://www.mehrnews.com/news/4455643/ (accessed August 14, 2019). 600-700 of these teachers retire each year with only 250 replacing them. Majid Ghadami, head of the Special Education Organization, Tasnim News Agency, May 29, 2019, https://www.tasnimnews.com/fa/news/1398/03/08/2021523/ (accessed August 15, 2019). 

[57] Mohsen Ghafoorian interview with Iran Newspaper, 18/6/1395, September 8, 2016, http://www.iran-newspaper.com/Newspaper/BlockPrint/149924 (accessed February 10, 2017).

[58] Researcher interview with Ahmad, resource teacher for blind students, a city in southern Iran, May 9, 2017.

[59] Researcher interview with Sahar, a town in northern Iran, May 14, 2017.

[60] Researcher interview with Najmeh, Tehran suburbs, March 30, 2017.

[61] Researcher interview with Najmeh, Tehran suburbs, September 15, 2018.

[62] Researcher interview with Ghasem, teacher in mainstream high schools for boys, Tehran, May 20, 2017.

[63] Researcher interview with Farideh, Alborz province, May 24, 2017.

[64] Researcher interview with Farideh, Alborz province, September 15, 2018.

[65] Interview with Fars News Agency,1394 (2015) http://www.farsnews.com/printable.php?nn=13940912000598 (accessed May 2, 2017).

[66] United Nations Convention on the Rights of Persons with Disabilities Committee, Replies of Islamic Republic of Iran to the List of Issues, January 13, 2017, CRPD/C/IRN/Q/1/Add.1, para. 138.

[67] CRPD, art. 24; CRPD General Comment no. 4, paras. 17, 20, 24, and 41; International Covenant on Social, Economic, and Cultural Rights, art. 13.

[68] Researcher interview with Sahar, a town in northern Iran, May 14, 2017.

[69] Ibid.

[70] Mohsen Ghafoorian, Education Planning and Rehabilitation Director, Special Education Organization, Fars News Agency, October 25, 2017, https://www.farsnews.com/news/13960730000276/ (accessed July 12, 2019).

[71] Researcher interview with Ehsan, disability rights advocate, small town western Iran, August 6, 2018.

[72] Researcher interview with Ahmad, a city in southern Iran, May 9, 2017.

[73] Researcher interview with Amin, a Tehran suburb, June 8, 2017.

[74] Researcher interview with Sahar, a town in northern Iran, May 14, 2017.

[75] Ibid.

[76] Researcher interview with Ahmad, a city in southern Iran, May 9, 2017.

[77] CRPD, art. 24(3).

[78] Researcher interviews with Karim, deaf children teacher, a town in western Iran, June 10, 2017; with Hajar, deaf rights advocate, Tehran, March 6, 2017; and with Ladan, researcher in linguistics, April 10, 2017.

[79] Researcher interview with Sirous, May 10, 2018.

[80] Mohsen Ghafoorian, Education Planning and Rehabilitation Director, Special Education Organization, Iranian Students News Agency, October 25, 2017, https://www.isna.ir/news/96080301874/ (accessed Jul 12, 2019).

[81] Researcher interview with Behdad, 14-year-old hard of hearing boy, a city in eastern Iran, July 28, 2018.

[82] Researcher interview with Keyan, 15-year-old hard of hearing boy, a city in eastern Iran, July 28, 2018.

[83] Researcher interview with Ghasem, teacher in mainstream high schools for boys, Tehran, May 20, 2017.

[84] Interview with Iran Newspaper, 18/6/1395, September 8, 2016, http://www.iran-newspaper.com/Newspaper/BlockPrint/149924 (accessed February 10, 2017).

[85] Researcher interview with Sirous,, May 10, 2018.

[86] Researcher interviews with Ghasem, teacher in mainstream high schools for boys, Tehran, May 20, 2017; and with Shamsi, teacher in mainstream high school for girls, May 28, 2017.

[87] Researcher interview with Ahmad, a city in southern Iran, May 9, 2017.

[88] Researcher interview with Sahar, a town in northern Iran, May 14, 2017.

[89] Researcher interview with Ghasem, mainstream teacher in high schools for boys, Tehran, May 20, 2017.

[90] Researcher interviews with Ahmad, a city in southern Iran, May 9, 2017; with Amin, teacher working in special schools for boys, Tehran suburbs, June 8, 2017; and with Karim, special education teacher, a town in western Iran, June 10, 2017.

[91] Researcher interview with Ahmad, a city in southern Iran, May 9, 2017.

[92] Researcher interview with Amin, teacher working in special schools for boys, Tehran suburbs, June 8, 2017.

[93] Researcher interview with Zohreh, education manager, school for girls with intellectual disabilities, November 17, 2016.

[94] Researcher interview with Karim, special education teacher, a town in western Iran, June 10, 2017.

[95] Constitution of Islamic Republic of Iran, Article 30, (قانون اساسی جمهوری اسلامی ایران) 24 October 1979, (official translation),  http://www.refworld.org/docid/3ae6b56710.html (accessed July 8, 2017).

[96] Charter on Citizenry Rights (منشور حقوق شهروندی)  launched and signed by President Rohani, Congress on the Constitution and Nation’s Rights, December 19, 2016, Ministry of Foreign Affairs, Section 111, http://kazan.mfa.ir/uploads/متن_کامل_منشور_حقوق_شهروندی.pdf (accessed March 22, 2017).

[97] Executive Rules on Integrated Education, art. 2(1).

[98] Comprehensive Plan to Protect Disability Rights, Regulation No. 77303, adopted by Cabinet of Ministers, 1394 (2015) sections 6 and 15, http://rooznamehrasmi.ir/laws/ShowLaw.aspx?Code=5834.

[99] CRPD Committee, General Comment No. 4, https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx, para. 9.

[100] CRPD, arts. 24 (1) and 24.

[101] CRPD, art. 24(1), and CRPD Committee, General Comment No. 4, paras. 8 and 9.

[102] CRPD Committee, General Comment No. 4, paras. 9 and 12(c).

[103] CRPD Committee, General Comment No. 4, para. 21.

[104] CRPD, art. 2, para 4.

[105] CRPD Committee General Comment No. 2, para. 26, and General Comment No. 4, para. 33.

[106] CRPD, art. 2, para. 4.

[107] CRPD Committee General Comment No. 4, paras. 29 and 32.

[108] CRPD, art. 24, para. 3(c).

[109] CRPD, art. 26, para. 3.

[110] CRPD, art. 24, para 4.

[111] CRPD General Comment No. 4, paras. 27 and 29.

[112] United Nations Committee on Economic, Social and Cultural Rights, General Comment No. 13, The Right to Education, UN

Doc. E/C.12/1999/10 (1999), para. 6 c); United Nations Committee on the Rights of the Child, General Comment No. 1, The

Aims of Education, UN Doc. CRC/GC/2001/1 (2001), para. 9.

[113] Committee on the Rights of the Child, General Comment No. 1, paras. 5 and 22.

[114] CRPD Committee General Comment No. 4, para. 12(c).

[115] CRPD, art. 2.

[116] CRPD, art. 24, para 2(a).

[117] CRPD, art. 4, para. 1(e) and art. 24 paras. 1 and 5.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

The names of the months in French and sign language are depicted inside a classroom for deaf students in Leveque, a community where a group of deaf people relocated after the 2010 earthquake in Cabaret, Haiti, April 17. 2016.

© 2016 AP Photo/Dieu Nalio Chery

We often take for granted our ability to interact with others in our own language. But significant barriers to communicating in sign language are depriving many deaf people of enjoying even these basic interactions.

More than 70 million deaf people around the world use sign languages to communicate. Sign language allows them to learn, work, access services, and be included in their communities. The United Nations Convention on the Rights of Persons with Disabilities calls on states to accept, facilitate, and promote the use of sign languages with the goal to ensure that people with disabilities can enjoy their rights on an equal basis with others.

But Human Rights Watch research around the world finds deaf people often struggle to access basic services. In India, Iran, and Russia, lack of sign language interpreters and information in accessible formats hampers access to public services and courts. In these and other countries, communication barriers also impede access to health care for deaf people. In one case, Shahla, a deaf woman in Iran, told us she can’t visit the gynecologist unless her mother accompanies her. “But this is very embarrassing to share everything when my mom is there. So it’s better not to go,” she says.

We have documented cases of deaf children in Nepal, China, and northern Uganda who were denied their right to education in sign language. In Brazil, we found many deaf people living in institutions spend their lives without being able to meaningfully communicate because they were never taught how to sign.

Everyone should be able to access information equally. Human Rights Watch offers multiple formats to increase accessibility of more of our products, including videos in sign language, closed captioning, and reports in easy-to-read format.

On this International Day of Sign Languages, governments should remember their obligation to ensure deaf people are able to access schools, jobs, medical treatment, and other services, and fully support their equal inclusion in society.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

(New York) – The United States government has proposed new rules for facilities administering antipsychotic drugs that would increase the risks to older people, Human Rights Watch said today. Human Rights Watch submitted formal comments to the Centers for Medicare and Medicaid Services (CMS), the government regulator for nursing facilities in the United States.

Under US regulations, a physician or prescriber must evaluate every 14 days a person who is being given antipsychotic drugs on an as-needed basis. The proposed rule would lengthen the review period for most residents to every 70 days, decreasing prescriber supervision for drugs that increase the risk of death when used for older people with dementia. 

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“Older people face a documented threat of overmedication with potentially dangerous drugs in US nursing homes,” said Bethany Brown, researcher on older people’s rights at Human Rights Watch. “The proposed rules appear to heighten the risk to older people and should be withdrawn.”

Human Rights Watch urged CMS to withdraw the proposed changes and instead improve enforcement of existing protections against overuse of antipsychotic medications. These drugs can be inappropriately used to control people’s behavior or for staff convenience – a practice known as chemical restraint – rather than to treat medical symptoms. They also pose special health risks to older people with dementia.

CMS should ensure that nursing home residents and their families are informed of treatment alternatives and have the right to refuse medication. The government should also ensure that  nursing  homes employ sufficient staff to provide supportive care to residents rather than using chemical restraint.

In a 2018 report, “‘They Want Docile’: How Nursing Homes in the United States Overmedicate People with Dementia,” Human Rights Watch documented US nursing facilities’ inappropriate use of antipsychotic drugs in older people as well as the administration of the drugs without informed consent. This practice occurred mostly as a result of inadequate enforcement of existing laws and regulations.

Nursing home residents who had been subjected to overmedication told Human Rights Watch about the trauma of losing their ability to communicate, think, and remain awake. Their family members described the pain of witnessing these losses in loved ones.

The US Food and Drug Administration (FDA) has never approved antipsychotic drugs for use in older people with dementia and warns against their use for symptoms of dementia. Clinical research has found that on average, antipsychotic drugs almost double the risk of death in older people with dementia.

CMS is facing scrutiny from the US House of Representatives Ways and Means Committee for  failing to enforce existing regulations regarding inappropriate antipsychotic drug use in nursing homes.

“The Centers for Medicare and Medicaid Services should improve protection for nursing home residents by enforcing existing rules, not look for ways to lower the bar,” Brown said. “Residents should have the support they need to live in dignity.”

Posted: January 1, 1970, 12:00 am