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

(New York) – The latest revisions to China’s Criminal Law impose up to seven years in prison for “spreading rumors” about disasters, Human Rights Watch said today. The revised law, which took effect November 1, 2015, does not clarify what constitutes a “rumor,” heightening concerns that the provision will be used to curtail freedom of speech, particularly on the Internet.

“The revised Criminal Law adds a potent weapon to the Chinese government’s arsenal of punishments against netizens, including those who simply share information that departs from the official version of events,” said Sophie Richardson, China director at Human Rights Watch. “The authorities are once again criminalizing free speech on the Internet, which has been the Chinese people’s only relatively free avenue for expressing themselves.”

The National People’s Congress Standing Committee approved the addition of a provision to article 291(1) of the Criminal Law (Criminal Law Amendment Act (9)), which states that whoever “fabricates or deliberately spreads on media, including on the Internet, false information regarding dangerous situations, the spread of diseases, disasters and police information, and who seriously disturb social order” would face prison sentences – with a maximum of seven years for those whose rumors result in “serious consequences.” The vagueness of the provision means that individuals doing nothing more than asking questions or reposting information online about reported local disasters could be subject to prosecution.

In the past, the Chinese government has detained netizens who questioned official casualty figures or who had published alternative information about disasters ranging from SARS in 2003 to the Tianjin chemical blast in 2015, under the guise of preventing “rumors.”

The revision was made in the context of a wider effort to rein in online freedom since President Xi Jinping came to power in 2013:

  • In August 2013, the authorities waged a campaign against “online rumors” that included warning Internet users against breaching “seven bottom lines” in their Internet postings, taking into custody the well-known online commentator Charles Xue, and closing popular “public accounts” on the social media platform “WeChat” that report and comment on current affairs;
  • In September 2013, the Supreme People’s Court and the Supreme People’s Procuratorate (the state prosecution) issued a judicial interpretation making the crimes of defamation, creating disturbances, illegal business operations, and extortion applicable to expressions in cyberspace. The first netizen who was criminally prosecuted after this took effect was well-known blogger Qin Huohuo, who was sentenced to three years in prison in April 2014 for allegedly defaming the government and celebrities by questioning whether they were corrupt or engaged in other dishonest behavior;
  • In July and August 2014, authorities suspended popular foreign instant messaging services, including KakaoTalk, claiming the service was being used for “distributing terrorism-related information”;
  • In 2015, government agencies such as the State Internet Information Office issued multiple new directives, including tightening restrictions over the use of usernames and avatars, and requiring writers of online literature in particular to register with their real names;
  • In 2015, the government has also shut down or restricted access to Virtual Private Networks (VPNs), which many users depend on to access content blocked to users inside the country and also help shield user privacy;
  • In March 2015, authorities also deployed a new cyber weapon, the “Great Cannon,” to disrupt the services of, an organization that works to document China’s censorship and facilitate access to information;
  • In July 2015, the government published a draft cybersecurity law that will requires domestic and foreign Internet companies to increase censorship on the government’s behalf, register users’ real names, localize data, and aid government surveillance; and
  • In August 2015, the government announced that it would station police in major Internet companies to more effectively prevent “spreading rumors” online.

Activists in China are regularly prosecuted for speech-related “crimes,” Human Rights Watch said. The best known of these crimes is “inciting subversion,” which carries a maximum of 15 years in prison. But authorities have also used other crimes such as “inciting ethnic hatred,” as in the case of human rights lawyer Pu Zhiqiang, who has been detained since May 2014 for a number of social media posts questioning the government’s policies towards Uighurs and Tibetans.

While providing the public with accurate information during disasters is important, the best way to counter inaccurate information would be to ensure that official information is reliable and transparent, Human Rights Watch said.

Above all, journalists should have unimpeded access to investigate and inform the public about these events, and the wider public should have the freedom to debate and discuss disaster response.

“The casualties of China’s new provision would not be limited to journalists, activists and netizens, but the right of ordinary people and the world to know about crucial developments in China,” Richardson said. “The best way to dispel false rumors would be to allow, not curtail, free expression.”

Posted: January 1, 1970, 12:00 am

A syringe used for injecting the opioid heroin. 

© Chaiwat Subprasom / Reuters

As we approach 2019 – the year set out by the UN a decade ago as the target date by which to “eliminate or reduce significantly and measurably” illegal drug markets – the International Drug Policy Consortium, a global coalition of 170 nongovernmental organizations working on drug policy issues, argues that this goal has been “spectacularly missed.”

The Consortium’s report, drawing on data from government and nongovernment sources, provides a comprehensive evaluation of the 10-year UN drugs strategy and concludes by urging UN member states to conduct their own honest and thorough assessment of the strategy, something that has so far not happened.

According to UN data analyzed in the report, illegal cultivation of opium poppy and coca bush increased by 130 and 34 percent respectively between 2009 and 2018; the number of adolescents and adults who had used drugs at least once in 2016 grew by 31 percent compared to 2011; and drug-related deaths surged by 145 percent from 2011 to 2015. Meanwhile, the global drug market continues to flourish with annual turnover estimated at US$426 to US$652 billion. More than half of the gross profits from the drug trade are laundered, with law enforcement seizing less than one percent of that money.

Overly punitive drug policies have exacerbated violence in countries like Afghanistan, Colombia, and Mexico, the report said, resulting in countless deaths, enforced disappearances, and displaced persons.

UN data shows that one in five prisoners worldwide is behind bars for drug offences, the overwhelming majority for mere drug possession. In some countries, as many as 80 percent of women in prison are there for drug offences.

Rates of HIV, hepatitis C, and tuberculosis infection among people who use drugs continue to be far higher than in the general population as most countries lack prevention and health services, or people are reluctant to use health services because drug use is criminalized.

At the UN General Assembly, US President Donald Trump recently called for member states to sign a document supporting “action on the global war against drugs”. Sixty-three countries did not sign, saying the document was too narrow, without enough focus on health, human rights, and appropriate punishments.

The report recommends that the next global drug strategy focus not on creating a “drug free world” but on improving health outcomes, compliance with human rights norms, and promoting development, peace and security.

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

Lebanon: Burning Trash Poses Serious Health Risk

Lebanese municipalities are endangering the health of residents by openly burning waste despite the passage of a national solid waste management law banning the practice. 

After years of researching Lebanon’s waste crisis, I was horrified to find out it had come to my family’s village. Open waste burning at unregulated dumps across Lebanon creates serious health risks for people living nearby. Mine and other Lebanese families regularly go to our ancestral villages to escape the crowds, noise, and pollution of the cities. Learning that the local government is polluting our villages by burning trash has brought the crisis and my own research home for me in a critical way.

According to a 2017 Ministry of Environment and UNDP report, there are more than 941 open dumps across Lebanon, including 617 municipal waste dumps, more than 150 of which are being burned on a weekly basis. Open burning poses serious health risks like heart disease, cancer, skin diseases, asthma, and respiratory illnesses. Despite the recent passage of a law clearly banning the practice, open burning continues.

The most recent analysis available indicates that open burning of waste is taking place in some of the poorest areas of the country. In other words, those populations least equipped to manage the health impacts of open burning or to escape from sites near open dumps are among those most negatively affected.

We have to protect ourselves and our neighbors. Residents can call on officials within the Ministry of Environment, Environmental Police, and Public Prosecutor Offices to stand up for our health. If you see open burning or dumping of waste call the Ministry of Environment on 1789 and file a complaint. Together we can #StopTheBurning.

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

Lebanon: Burning Trash Poses Serious Health Risk

Lebanese municipalities are endangering the health of residents by openly burning waste despite the passage of a national solid waste management law banning the practice. 

(Beirut) – Lebanese municipalities are endangering the health of residents by openly burning waste despite the passage of a national solid waste management law banning the practice, Human Rights Watch said today. Following decades of mismanagement of solid waste, Lebanon’s parliament passed the law on September 24, 2018, during the first parliamentary session since elections in May.

Municipalities are flouting the law, which bans open dumping and burning of waste and sets penalties for violations. The law gives the Environment Ministry an oversight and monitoring role and mandates the ministry to develop a national waste management strategy within the next six months.  

“Now that parliament has passed the long overdue solid waste management law, the Lebanese government needs to carry it out,” said Lama Fakih, deputy Middle East director at Human Rights Watch. “Unless violators are held accountable, Lebanese will continue to suffer devastating impacts on their health and their environment.” 

Signs of burning at the al-Qantara dump, including soot from recent burns and ash deposits, October 11, 2018, Qantara, Lebanon. 

© 2018 Lama Fakih for Human Rights Watch

Lebanon’s waste crisis gained international recognition in 2015, when garbage overflowed in the streets of Beirut. But Lebanon’s mismanagement of its waste, including by burning it at dumps, is decades-old. Human Rights Watch found in a December 2017 report that burning waste at more than 150 open dumps was risking the health of nearby residents. The practice violates Lebanon’s obligations under international law, including the government’s duties to respect, protect, and fulfill the right to health.

Human Rights Watch researchers visited two villages in south Lebanon, al-Qantara and Qabrikha, on October 11 and spoke with residents in al-Qantara who had witnessed the open burning of waste in the municipal open dumps in both villages in previous days. Media have reported that the practice continues in other towns and villages across the country.

Signs of burning at the al-Qantara dump, including soot from recent burns and ash deposits, October 11, 2018, Qantara, Lebanon.

© 2018 Lama Fakih for Human Rights Watch

The dump at Qabrikha was still smoking when Human Rights Watch researchers were on the site and there were clear signs of burning at the al-Qantara dump, including soot from recent burns and ash deposits. Residents said that municipal open dumps in neighboring al-Ghandoriya, Rab Thalatine, and Beni Hayyan were also still burning waste in spite of the new law, but Human Rights Watch was unable to verify these claims through site visits.

One resident said that, despite repeated requests to the head of the Qabrikha municipality about the burning over the past week, the burning persisted. “We got to a point where we can’t sleep anymore,” he said. “It [the Qabrikha dump] is continuously on fire and affecting us…The smell would get stuck in your nose. It’s a problem. My son is 6 years old, he has a cough…Two days ago, when they burned in the morning, you couldn’t see the surrounding towns.”

Scientific studies have documented the dangers that smoke from the open burning of household waste pose to human health. Children and older people are at particular risk.

Human Rights Watch interviewed the deputy head of the Qabrikha municipality, Imad Fahes, on October 12 by phone. Fahes admitted that the municipality was open burning nonrecyclable waste on a monthly basis. He said that while he was aware of the new waste management law and the penalties associated with open dumping and burning of waste, the municipality was waiting for instructions from the Jabal Amel union of municipalities on how to proceed.

“Perhaps we can adopt sanitary landfilling,” he said. “But we need expertise and to know whether it would affect groundwater. There’s also the funding issue…But the principal thing we need is instructions and technical guidance.”

Guidelines to municipalities and unions of municipalities on solid waste management were however already circulated by the Ministry of Environment in November 2017. 
Human Rights Watch tried unsuccessfully multiple times to reach the head of the al-Qantara municipality but did interview an employee from the al-Qantara municipality responsible for picking up the waste. He denied that the municipality was burning trash. When researchers told him there was evidence of burning at the dump site, he said this must be from old burning at the site. But visible ash deposits and black soot at the dump, and a noticeable absence of piles of trash, suggested that this was not the case. Residents also said the burning at the al-Qantara site was continuing and one resident provided photos to Human Rights Watch taken on September 24 that appeared to show smoke from the burning of trash at the al-Qantara dump.

Signs of burning at the al-Qantara dump, including soot from recent burns and ash deposits, October 11, 2018, Qantara, Lebanon.

© 2018 Lama Fakih for Human Rights Watch

The Environment Ministry should urgently begin monitoring compliance with the solid waste management law and ensure that violators are appropriately penalized, Human Rights Watch said. The ministry has set up a complaints process to receive information about environmental offenses like open dumping and burning of trash, including a hotline that residents can call by dialing 1789. The cabinet should consider the ministry’s budget requests to ensure it can carry out monitoring. The government should ensure that everyone in Lebanon who suffers a violation of their right to health through action or failures by state bodies has an effective remedy.

The environmental public prosecutor in each governorate should also be adequately resourced to investigate complaints received from the Environment Ministry and others and ensure that violators are held accountable. The Justice Ministry should publish the names of the environmental public prosecutors in each governorate to facilitate the reporting of violations, Human Rights Watch said.

In January, Human Rights Watch opened a campaign calling on parliament and the cabinet to pass a waste management law and develop a strategy on waste management for the entire country and comply with environmental and public health best practices and international law. Over 12,000 people signed a petition in support of the campaign.

The new law requires the Environment Ministry to establish a national strategy within six months. In January, the cabinet passed a a summary policy on Integrated Solid Waste Management, and the environment minister formed a committee on waste management, which includes a civil society representative.

Smoke rising from the smoldering dump at Qabrikha, October 11, 2018, Qabrikha, Lebanon.

© 2018 Lama Fakih for Human Rights Watch

In keeping with its obligations under the new law, the Ministry of Environment should build on the summary policy by developing a long-term strategy for waste management. It will need to detail plans for reduction, sorting, collection, transfer, storage, processing, and disposal of solid waste in a manner that takes into account the perspectives of the public health and environmental experts and local communities, Human Rights Watch said.

“The next six months present an opportunity for the community to work with the Environment Ministry to build on the summary waste management strategy that was passed in January,” Fakih said. “For the long-term strategy to be effective, it should take into consideration the concerns and expertise of local communities and public health and environmental experts.”

The dump at Qabrikha is adjacent to a recycling facility. Human Rights Watch researchers visited the facility and spoke with an employee there. He said waste that was not recyclable and non-organic was returned to the municipalities whose trash was processed at the facility. He said that Qabrikha municipality moved this waste into the nearby open dump, where he saw them burn it. He said trash at this dump included plastic bags and diapers. Human Rights Watch researchers also observed clothes and other household waste at the dump. Qabrikha is in the Wadi Hujeir Nature Preserve.

Residents could not specify when burning at the dumps began but estimated that it had been going on for years and said that burning in the past week had been particularly intense.

One woman who moved to al-Qantara in May 2017 said the municipalities have been burning the al-Qantara and Qabrikha open dumps since she arrived:

We can’t breathe at night. The smoke builds up and it moves towards us like fog. I can’t recover from the flu…There’s smoke every day. And the smell is strong at night. It’s the smell of nylon, it’s heavy and odd, something you can’t handle. I didn’t see a doctor or pharmacist regarding the symptoms. I take medicine for blood pressure and diabetes, why add to all this? I drink tea with lemon… The maximum I can do is close the windows, what more can I do?... And not just me, others, even my grandsons, they’re always sick.

Another woman, who has lived in al-Qantara for two and a half years with her husband, said:

The smell of trash, the burning, it’s unbearable. Especially the 2-3 days we went through last week…The smell is usually from Qabrikha…The latest incident was 3 or 4 days ago. I woke up at night suffocating. Smoke was filling the house. This is a village. There’s no pollution. Why would we have to wake up feeling like this? It was from Rab Thalatine. I knew because of the direction of the wind, which was from the east...The smoke smelled like trash… The main symptom was difficulty breathing and chest pressure…My husband had a surgery in the lungs. This smoke isn’t good for him. And of course he was irritated. He had difficulty breathing.

An older man also described his symptoms during the trash burning: “The symptoms are usually difficulty breathing. And some symptoms the next day, like black phlegm, from all the polluted air that gets into you. I experience this only when the burning takes place, otherwise no.”

Posted: January 1, 1970, 12:00 am

A group of Doctors meet in the University of Mississippi Medical Center in Jackson, Mississippi October 4, 2013. 

© 2013 Reuters

On September 13, Lambda Legal and interACT Advocates for Intersex Youth published a detailed guide on how to make hospitals compassionate, affirming, and evidence-driven centers for intersex health care. It is very badly needed.

I have interviewed dozens of doctors, surgeons, and mental health providers who care for intersex children in the US, and who work with parents of children born with genital differences.

Every practitioner I met across the United States told me they needed more data and guidance. Every parent told me they just wanted the information and advice they needed to raise a healthy and happy child. Every person with intersex traits whose story I heard spoke of the deep desire to make informed decisions about their own body. A 40-year-old intersex woman in California told me about the medical care she received as a child: ““I felt like I was being treated like I was on fire, and they were going to throw water on me because I was on fire.” She said: “But all that time, they didn’t realize I was drowning.”

Unfortunately, affirmative and respectful care for intersex people is not the norm — far from it.

“Intersex” refers to the approximately 1.7 percent of the population born with a range of bodily traits that do not fit conventional expectations of female or male. Their sex characteristics, such as chromosomes, gonads, or genitals, may differ from social expectations. These variations are medically benign.

But in the 1960s, American surgeons popularized cosmetic operations to “normalize” intersex children. These children generally have no medical problem. And no data has ever demonstrated that the operations help children “fit in” or “function in society,” which some surgeons say is the aim of the procedures. The operations, such as clitoral reductions, vaginoplasties, and gonadectomies, carry high risks of scarring, incontinence, sterilization, and psychological trauma.

I heard from parents who felt coerced — even bullied — into going ahead with cosmetic surgeries to which their children are not old enough to consent. Some surgeons, under the protection of anonymity in our interviews, described to me how they told parents that surgery could prevent their kid’s suicide — which is flagrantly untrue and deeply unfair to confused and distressed parents.

But most of the doctors I spoke with acknowledged the shortcomings of intersex health care, even in their own practice over the years. They wanted guidance and policy to help them do better, as a community of physicians who took an oath to “Do No Harm” by their intersex patients.

Now that guidance exists.

Lambda and interACT’s new guidelines make it clear: Intersex patients need specialized care, but above all, they need honesty and support from their doctors. There are parallels in transgender health care issues and good basic standards for informed consent that should be applied to all patients. Intersex people aren’t asking for anything groundbreaking or special — just respect and transparency, and an end to the coercive early surgery that has damaged so many lives.

The document outlines how hospitals should include variations in sex characteristics in their non-discrimination policies, establish and uphold policies ensuring that their surgeons will not perform medically unnecessary surgeries on intersex children who are too young to give their own informed consent, support parents of intersex infants, and refrain from stigmatizing intersex children.

Doctors have in recent years increasingly acknowledged that they need guidance on intersex issues to avoid repeating past mistakes.

In 2017, Dr. Ilene Wong, a urologist in Pennsylvania, acknowledged the harm in which she took part when she operated on an intersex child without her consent. She wrote in Newsweek: “Eight years ago, I did irrevocable damage to the first intersex person I ever met.” Dr. Wong, who has become a staunch intersex patient advocate, knows that her field of surgery has stuck stubbornly to an outdated and harmful paradigm.

“The psychological damage caused by intervention is just as staggering, as evidenced by generations of intersex adults dealing with post-traumatic stress disorder, problems with intimacy and severe depression,” she said.

Other doctors agree.

“It is harmful to make sex assignments based on characteristics other than gender identity,” said Dr. Deanna Adkins, the director of the Duke University Center for Child and Adolescent Gender Care, when she testified in a North Carolina court against the state’s notorious anti-transgender “bathroom bill.” Infants too young to walk or speak cannot express their gender identity. So the surgeries in question should be deferred until they can express their gender identity and give their informed consent for procedures that will alter how their bodies look and feel.

Alice Dreger, a bioethicist who served on a National Institutes of Health (NIH) intersex research project before resigning in protest in 2015, wrote of her two decades of engagement on the intersex surgery controversy: “While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent.”

The new guide from Lambda Legal and interACT gives those physicians footing to make a difference by creating policies that will make their intersex patients feel welcome in their clinics — and ensure they receive care that affirms them and their choices about their bodies, rather than subjecting them to other people’s ideals.

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

Maria Gabriela Silva Alves (“Gabi”), age 2, with her mother, Maria Carolina Silva Flor (“Carol”), at their home in Esperança, Paraíba state, Brazil in 2018. Gabi was one of thousands of children born with disabilities caused by exposure to the Zika virus in utero during the 2015-2016 outbreak.

© 2018 Joselito Alves dos Santos
Listening to the candidates running for president in Brazil, one would never know that just three years ago the Zika epidemic radically changed the lives of thousands of Brazilian families.

Maria Carolina Silva Flor (“Carol”) and Maria Paula, who asked us to identify her only by her first name, are two women who gave birth to children with congenital Zika syndrome during the 2015-2016 outbreak in northeastern Brazil. The very serious effects of the virus were not well known back then, and they could not imagine how their lives would change. Today, as their children grow, and their needs evolve and change, both mothers struggle to raise their children without adequate support from the government.

Carol’s municipality, Esperança, does not offer the services her daughter, Gabi, needs. So three times a week, she travels half an hour each way to Campina Grande, a larger city in Paraíba state, for appointments with doctors and specialists.

In Recife, Maria Paula has a wheelchair to help move her daughter, Mariana, who now weighs 13 kilograms, to her medical appointments twice a week. But the buses she takes are not accessible, so she leaves the wheelchair at home and carries Mariana in her arms.

I first met Maria Paula and Carol in late 2016 while doing research for a Human Rights Watch report on the impacts of the Zika outbreak in Brazil. We found that families raising children with congenital Zika syndrome don’t have the support they need, much less services that protect their basic human rights to life and health. People in the area have limited access to clean water and sanitation services, and women and girls lack comprehensive reproductive health information and services.

Over the last few months, I spoke to some of the mothers again, including Maria Paula and Carol. While their children have been able to get some health care, many of them found it difficult to get all the services they need, and in many cases, they worried about the quality of that care. They also reported difficulties in scheduling surgery, getting to health appointments, and buying expensive medicine. Recently, mothers of children with Zika syndrome in Campina Grande protested against the lack of beds in intensive care units for their children, which contributed to the death of one baby born with disabilities linked to the virus. 

According to Ministry of Health data, as of June one-third of the children who have confirmed cases of congenital Zika syndrome have not been able to get primary pediatric care and two-thirds have not been able to get the specialized early stimulation that will be especially important for their development.

Caring for a child with congenital Zika syndrome is a strenuous routine without an adequate network of support services, such as personal assistance for parents. Some mothers described feeling emotionally exhausted, or said they faced discrimination or prejudice against them and their children at health centers or on public transportation. One mother told me that a bus driver initially refused to open the door for her and her daughter with Zika syndrome and then told her to “shut up” when she defended her daughter’s right to free transportation. The mother filed a complaint with local authorities, but after the hostile encounter, she developed panic attacks and felt unable to ride the bus and face the driver for several months. She couldn’t take her daughter to the therapy programs and medical appointments she needed. “I didn’t have the emotional state to take care of her,” she said.

Caregivers need support. One way of helping them is through providing day care centers with staff trained to work with children who have Zika syndrome. As one mother of a two-year-old boy with Zika syndrome told me, having day care that she trusted to meet her son’s special needs would enable her to look for a job that would help her support her son and get the services he needs.  

The lack of community-based services and support could have devastating consequences for children with congenital Zika syndrome. A recent Human Rights Watch report found people with disabilities living confined in institutions under inhumane conditions, with little contact with the community. Many enter institutions as children and remain there for their entire lives. Without the proper support, children with congenital Zika syndrome could end up in the same institutions.

At the height of the outbreak, Zika was all over the news, and authorities felt pressure to respond. But now, the families affected by the virus are in danger of being forgotten – by the public and the authorities. The decreasing number of children born with congenital Zika syndrome might give the impression that the Zika outbreak no longer requires attention from the state. Nothing could be further from the truth. For families with children affected by the epidemic, its consequences will last their whole life.

Maria Paula and Carol are trying to do the best for their kids, to give them the best quality of life they can have. Federal and local authorities should not leave them to struggle alone. These children need the best medical and developmental care available, and they need care within reach. Providing these services will not only help them and their families but will strengthen their entire communities. 

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

Gangashree walks through the village to manually clean human excrement from dry toilets in Kasela, Uttar Pradesh, which she will collect in her basket and carry to the outskirts of the village for disposal.

© 2014 Digvijay Singh

“We don’t get any other job no matter where we go. I have tried. I know this is discrimination, but what can I do?” In June 2014, when I met 18-year-old Bablu, he was working through a contractor for the government, cleaning garbage and excrement from drains in Bharatpur city in Rajasthan state.

Bablu is a Dalit. His parents were cleaners. After he completed eighth grade, more schooling than his parents had, he said he looked for a job that could lift him out of the status accorded at birth by the caste structure. He wanted something that better matched his skills.

Bablu says he was thrilled when he secured a job interview in a hotel because he wanted to train as a waiter. But as soon as the manager heard his caste, Bablu was hired instead to clean toilets. Others with a similar education who were not Dalit, got the waiter jobs.

Bablu quit the hotel job soon after. He is now among thousands of Indians who are “manual scavengers,” manually cleaning human excrement from private and public dry toilets, open defecation sites, septic tanks, open and closed gutters and sewers.

They are forced into this work because they are usually from caste groups customarily relegated to the bottom of the caste hierarchy and confined to livelihood tasks viewed as deplorable or too menial by higher caste groups. Bablu, like most people who do this work, is from the Valmiki caste, a sub-caste discriminated against even by other Dalits. They usually work without protective gear, not even gloves. For generations, women working as manual scavengers would carry baskets of human waste on their heads.

On September 15, Prime Minister Narendra Modi opened a nationwide movement, Swachhata Hi Seva (Cleanliness is Service), as part of his flagship program Swachh Bharat or Clean India Mission focused on ending open defecation and sanitation. He called on people to participate in the drive, describing it as a service to the nation and picked up a broom himself to set an example. But he didn’t address manual scavenging.

India reiterated the ban on manual scavenging in 2013 with the Prohibition of Employment as Manual Scavengers and Their Rehabilitation Act. The law recognises a constitutional obligation to correct the historical injustice and indignity suffered by manual scavenging communities by providing alternate livelihoods and other assistance.

However, as Human Rights Watch and others have found, the practice is prevalent throughout India not just in homes but perpetuated by governments. Urban municipal corporations hire men and women for this work, both directly and through contractors, as in Bablu’s case, based on discriminatory caste-based hiring practices. They work without regard to labor or occupational safety standards or protections.

The authorities continue to bury the problem by grossly underreporting it. The government reports only 53,000 “manual scavengers,” but has figures from only 121 of the more than 600 districts in the country. This also excludes most of urban India, those engaged in cleaning sewers and septic tanks, and data from the state-owned railways, the largest employers of manual scavengers, to wash the tracks.

A Dalit woman removes excrement from dry toilets in Kasela village in Uttar Pradesh, India, where the state has failed to enforce laws prohibiting the practice of “manual scavenging.” 

© 2014 Digvijay Singh

A Job With Fatal Consequences

The sanitation workers face serious consequences, even a risk of death. Government data shows that since January 2017, 123 people have been killed while they were engaged in this occupation. In September alone, 11 sanitation workers died while cleaning sewers or septic tanks without adequate protective gear. In one incident, five men died when cleaning a sewer in Delhi. The latest deaths prompted hundreds of people to protest in New Delhi on September 25, demanding an end to the practice and compensation for victims’ families.

The government data on these preventable deaths, based on newspaper reports and numbers provided by a few state governments, are far from complete. Safai Karmachari Andolan, a rights group working to rehabilitate sanitation workers, says that at least 300 people have died since 2017.

The government figures do not include those who continue the outlawed work of cleaning dry toilets by hand, overwhelmingly Valmiki women. They face severe health consequences, including constant nausea and headaches, respiratory and skin diseases, anemia, diarrhea, vomiting, jaundice, trachoma, and carbon monoxide poisoning.

‘Swachh Bharat’ Ignores Manual Scavenging

The government says that in the last four years, it has built 90 million new toilets.

But ending the use of dry toilets and open defecation is not sufficient to address manual scavenging. There has been little progress to end the caste-enforced practice of manual scavenging or rehabilitate those previously forced to do this work. A robust effort is needed to modernise sewage systems and regularise the sanitation workforce, with proper labor and occupational safety protections.

Instead, the Swachh Bharat Mission has at times ended up reinforcing or further perpetuating caste-based discrimination. Recent reports from Delhi, Uttar Pradesh, Gujarat, Madhya Pradesh and Uttarakhand show that some state governments are still hiring people directly or through contractors to clean human waste manually, in violation of the law.

Even in states like Gujarat and Uttarakhand, which have declared themselves upgraded, the use of dry latrines and open defecation persist. And thus, so does manual scavenging, raising serious concerns over reliability of government data.

In rural areas, the government subsidises affordable toilets – often two-pit latrines – but has failed to counter abusive practices that are still immersed in age-old notions of purity, caste and untouchability. Unlike more modern forms of sanitation, these latrines need to be emptied manually. In rural communities, clearing manual pits remains the job of the Dalits, a study by New Delhi-based Research Institute for Compassionate Economics shows.

In November 2017, the United Nations special rapporteur on the human rights to safe drinking water and sanitation, at the end of his India visit, expressed concerns that Swachh Bharat may fail to eliminate manual scavenging and “may involuntarily contribute to violating the fundamental principle of non-discrimination.”

Ending Caste-Based Discrimination

The Indian government has taken a step in the right direction toward universal access to sanitation, and removing health risks associated with widespread open defecation. But process is plagued by lack of accountability, unreliable government data, and a focus on building infrastructure that does not take into account or work to reverse the realities of entrenched caste prejudice.

It is in fact causing new abuses as officials rush to meet targets. Some district officials have even used public shaming or denied access to public services to check open defecation or coerce people to build toilets.

For Bablu and others like him to end this “most degrading surviving practice of untouchability in the country.” the government will need to do much more. In addition to mechanising sanitation systems and supporting a professional sanitation workforce, it should strictly enforce the anti-manual scavenging law, including against local government officials who engage in caste discrimination in the workplace.

Everyone engaged in manual scavenging should be properly identified to ensure that they receive entitlements provided by the 2013 law, including financial assistance, scholarships, housing, alternative livelihood support and other important legal and programmatic assistance.

There has been an outpouring of support from India and abroad for the Swachh Bharat Mission. Individuals, companies, international financial institutions such as the World Bank and concerned governments should insist that the government’s Clean India Mission includes abolishing caste-based practices that impose sanitation-related tasks on Dalits.

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

Corridor in a care facility for older people. 

© Flickr

The Australian government is taking an important step to investigate potential abuses against older people in care facilities and beyond. This week, Australian Prime Minister Scott Morrison announced a Royal Commission to investigate the industry responsible for providing support and health services to older people. Terms of reference are being drawn up now.

Sadly, the commission appears quite timely. The day after it was announced, a leading television news program exposed serious concerns in care facilities for older people, including lack of informed consent for the use of antipsychotic drugs. Another news story this week carried the claim by a geriatric specialist that 80 percent of people with dementia in nursing facilities in Australia are being given those drugs.

Human Rights Watch has found similar abuses in private nursing facilities in the US, concluding that people in such nursing facilities are often at heightened risk of neglect and abuse. This is frequently due to their physical or mental disabilities, and isolation from friends, family and the community. Often, they are unable or not allowed to leave the facility alone. Human Rights Watch determined that in the US, many people are forced to depend entirely on the institution’s good faith and have no realistic avenues to help or safety when that good faith is violated.

The experiences of older people should help shape the terms of reference for the commission. Older people who are most at risk will not have their perspectives included unless the government actively seeks them out. This investigation is about the daily lives of older people, and the Royal Commission has the chance to do this right by including the voices and perspectives of older people using aged care. 

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

Naloxone, a medicine that can reverse an opioid overdose. Massachusetts, US, August 8, 2017. 

© 2017 Reuters.
The opioid crisis in the U.S. rages on, with no end in sight. More than 72,000 people died of drug overdose in 2017, up from 63,000 the year before. In Florida, experts estimate that 20 Floridians are dying from overdose every day.


Video: Florida Needs Syringe Exchange

Syringe exchange programs have a proven record of reducing HIV and Hepatitis C infection, preventing overdose, and bringing people into treatment without raising rates of drug use or crime. 

Many of these deaths are unnecessary. From a public health perspective, we know what to do — we are just failing to do it.

Naloxone, for example, is not nearly as available in Florida as it should be. Naloxone is a safe, generic medication that when administered promptly can reverse the effect of opioid overdose, literally bringing someone back to life. Used for decades in emergency rooms and ambulances, it has no potential for abuse and can be administered by lay people with minimal training. But naloxone can only be effective if it gets into the hands of the people most likely to be at the scene of an overdose — people who use drugs, and their family and friends. The U.S. Surgeon General recently issued an advisory urging greater access to naloxone, but there are still too many unnecessary barriers.

Syringe exchanges are ideal sites for direct naloxone distribution, as people who use drugs go to exchanges to receive a range of health services in a non-judgmental setting. Syringe exchanges are saving an astounding number of lives every day. The University of Miami’s IDEA Exchange has reversed more than 700 overdoses since it began distributing naloxone in March 2017. 

Yet resistance to syringe exchange programs blocks their expansion. Drug paraphernalia laws, lack of understanding of how exchanges work, stigma surrounding drug use and other factors prevent offering this  proven public health service in many communities.

The IDEA exchange is the only such program in Florida, but Miami isn’t the only place where it is needed. According to the Centers for Disease Control, in 62 Florida counties rates of overdose death are higher than they are in Miami-Dade. In seven counties — including Franklin —people are dying of overdose at rates  three times as high as in Miami-Dade.

In 2017, state Sen. Oscar Braynon and Rep. Shevrin Jones sponsored legislation to permit other counties to establish syringe exchange programs in conjunction with their local departments of health. The bill gained substantial support from law enforcement, but failed to get to a floor vote in the House. Some people think making syringes available to people using drugs enables their habit and threatens to bring more crime to the community. But the facts indicate otherwise.

After decades of research in the U.S. and globally, there is no evidence showing increased drug use in communities with syringe exchanges. Indeed, the opposite is true. Exchanges have a strong record of helping to bring people into treatment. They are also incredibly cost-effective, as clean needles cost pennies while drug-related infections cost millions in emergency room visits, medications and hospital stays. 

This year, Sen. Braynon and Rep. Jones will re-introduce the bill to allow other Florida counties to start a syringe exchange. If it passes, by next year there could be better news to report.

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

Human Rights Watch submits this comment in response to the Notice of Petition for Rulemaking and Request for Comments on the continued exclusion of surgical procedures from the medical benefits package offered to transgender veterans by the Department of Veterans Affairs (VA). Human Rights Watch urges the VA to remove this exclusion as arbitrary and discriminatory. It should be seen as contrary to the statutory obligation of the VA to provide necessary medical care to veterans.

Under federal law, the Secretary of Defense is required to furnish to veterans “medical and hospital care that the Secretary determines to be needed.”[1] In implementing that directive, the Secretary has established the medical benefits package, and the criteria used for inclusion in that package is whether the particular care is “medically needed,” defined as “care that is determined by appropriate health care professionals to be needed to promote, preserve or restore the health of the individual and to be in accord with generally accepted standards of medical practice.”[2] In keeping with that definition, the VA covers and/or provides treatment for gender dysphoria for transgender veterans, including hormone replacement therapies, counseling, and other health services.

However, the VA has for decades excluded coverage for surgical procedures related to gender transition. For some individuals, however, surgical procedures for the treatment of gender dysphoria are necessary and meet the criteria for inclusion in the benefits package. Exclusion of surgery in all cases fails to meet the standards of care set forth by the World Professional Association for Transgender Health (WPATH), standards that are recognized as authoritative by numerous medical bodies including the American Medical Association, the Endocrine Society, and the American Psychological Association.[3]

The medical necessity of surgery for some individuals in care for gender dysphoria has been acknowledged by the Department of Veterans Affairs. In a letter from then Under Secretary for Health in the Department of Veterans Affairs David Shulkin, MD to Senator Elizabeth Warren dated November 10, 2016, Shulkin stated that “surgical procedures are now widely accepted in the medical community as medically necessary treatment for gender dysphoria.”[4] In this letter, Under Secretary Shulkin stated that the VA was considering issuing a Notice of Proposed Rule Making for removal of this exclusion from the benefits package.

Shortly thereafter, however, the Trump administration announced that the exclusion would not be removed, prompting a Petition for Rulemaking filed by transgender veterans including Gio Silva, a veteran who was denied a mastectomy by the VA because he is transgender. Mastectomies and other surgeries of many types are offered to cisgender veterans when determined necessary for mental or physical health.[5] As Human Rights Watch and others have extensively documented, transgender people face high levels of discrimination in health care settings, and continuation of this rule by the VA serves as yet another barrier to access to health care that is unnecessary and unjust.[6]

For these reasons, Human Rights Watch urges the Department of Veterans Affairs to remove the exclusion of surgical procedures for transgender individuals from the benefits package.

[1] 38 USC 1710

[2] 38 CFR 17.38 (b)

[3] WPATH, Standards of Care for the Health of Transexual, Transgender and Gender Non-Conforming People, Version 7, and Lambda Legal, “Professional Organization Statements Supporting Transgender People in Health Care,”  (accessed September 4, 2018.)

[4] See, appendix 1, Brief of Petitioners, Fulcher v Secretary of Veterans Affairs, USCA Federal Circuit, No. 2017-1460.

[6] Human Rights Watch, “You Don’t Want Second Best: Anti-LGBT Discrimination in Health Care ,” July 2018

Posted: January 1, 1970, 12:00 am

A general view of atmosphere as THINX lights up the Brooklyn Bridge and UN Secretariat Building to draw attention to period poverty on March 8, 2018 in New York City.

© 2018 Andrew Toth/Getty Images for THINX

Every girl around the world has feared it, or worse, felt it: the snickers of peers who see bloodstains on her clothes, the sneers of classmates as she slips a pad into her pocket. But what of the girls who can’t afford sanitary products, who have to ask teachers or friends for a pad or tampon? Many girls and young women face this burden, which can isolate them and contribute to their missing or even leaving school.

Scotland’s government is leading the way to change this, announcing this week that it will provide free menstrual hygiene products at all schools and universities across the country. This is reportedly a global first. Governments including those in Kenya, some states in India, and the US state of New York have made similar commitments for primary and secondary schools.

But in truth, few governments support girls and young women in overcoming barriers to managing menstruation -- something natural and universal yet intensely stigmatized.

“Period poverty” seems to have taken on new urgency in the United Kingdom after reports surfaced about women and girls having to choose between buying food or period supplies. In February, a survey in Scotland revealed women were using toilet paper, rags, and old clothes in place of sanitary pads, which they couldn’t afford; nearly 1 in 5 respondents said they went without period products due to financial strain. A 2017 survey revealed that 1 in 7 girls in the UK had struggled to afford sanitary products, and 1 in 10 reported being unable to pay for them. 

Distributing sanitary pads or tampons alone won’t eliminate the many and varied reasons girls worldwide miss or drop out of school – which include child marriage, sexual assault and harassment, pregnancy, and discrimination. But it is foolish to ignore periods and their economic, social, and physical toll on girls and young women, especially those struggling with homelessness, unemployment, or poverty

Periods shouldn’t come with sacrifices. The ability to manage menstruation is not a luxury – it’s essential to enjoying the rights to health, water and sanitation, education, work, and non-discrimination. The Scottish government sets an excellent example here. Other governments should follow its lead and commit to respecting the rights of all girls and young women by enabling them to manage periods with dignity—including by ensuring access to period products.

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


This submission focuses on the right to education including discrimination in education for children with disabilities and barriers for pregnant girls and adolescent mothers’ to education.  It also looks at protection of environmental activists, the rights of sex workers, and protecting education from attack.

Right to Education (Articles 13 and 14)

When South Africa ratified the International Covenant on Economic, Social and Cultural Rights (ICESCR) in January 2015, it included a declaration that the government “will give progressive effect to the right to education … within the framework of its National Education Policy and available resources.”[1] The declaration indicates a compromise of South Africa’s commitment to key international obligations on the right to education; notably the obligation to guarantee the right to free and compulsory primary education to all children.[2] Indeed, South Africa has yet to develop an action plan on how it will guarantee free and compulsory primary education to all children, pursuant to its obligations under article 14.

Free Education

South Africa does not guarantee the right to free primary or secondary education to all children in law or practice.[3] Research by Human Rights Watch in 2014 and 2015 found that the current fee-based system particularly discriminates against children with disabilities. It results in many children with disabilities paying school fees that many children without disabilities do not, as well as additional costs, such as for uniforms, food, transport, and to secure reasonable accommodations for the child’s disability.[4]

South Africa’s Schools Act mandates that the state fund public schools on an equitable basis.[5] The government in turn requires that the governing bodies of public schools—made up of teachers, parents, and other community representatives—adopt a resolution for a school to charge fees and supplement a school’s funding “by charging school fees and doing other reasonable forms of fund-raising.”[6]

Public schools may be classified as “no-fee” schools, a status granted to public schools by provincial governments, which means that those schools should not charge fees. Today, around 80 percent of schools across the country benefit from a “no-fee” policy, and approximately 60 percent of the current school population accesses “no-fee” schools. The “no-fee” designation is based on the “economic level of the community around the school,” and on a quintile system from poorest to richest, whereby the lowest three quintiles do not pay fees in designated public schools.[7]

Since 2014, Human Rights Watch has found that no special schools, where most children with disabilities are enrolled, are listed in any “no-fee” schools list produced by the government.[8]

Although a high number of students in special schools come from townships and predominantly poor areas of towns, many public special schools in urban areas are located in wealthier suburbs previously inaccessible to the majority of children under apartheid.[9] The income level of surrounding communities and locations means many special schools fail the “needs” or “poverty” test used to assess a school’s access to recurrent public funding or to qualify as a “no-fee” school.[10]

The high cost of education, including school fees and other school-related costs, continues to be a significant barrier keeping children with disabilities out of school. School fees in special schools visited by Human Rights Watch ranged from R350-R750 (US$24-$53) per each of the year’s four terms. In many cases, parents reported not having access to fee waivers. In some cases, parents paid as much as R5,000 ($353) per year in school fees alone. Parents with children who are referred to special schools which are far away from their families also pay for boarding or housing fees and transport for their children to travel long distances to school. Many are not able to pay these costs, which leads to children being excluded from school.[11]

In 2017, senior government officials indicated their intention to review school fees for children with disabilities but did not adopt any policy changes at the beginning of the school year in January 2018.[12] At time of writing, the South African government had not communicated an intention to adopt measures to ensure children with disabilities do not pay for school fees, on an equal basis with children without disabilities.

National Resources for Inclusive Education

Insufficient allocation of resources for inclusive education remains a concern. The majority of the limited budget for students with disabilities continues to be allocated to special schools rather than to inclusive education.[13] Most mainstream schools do not have additional budget lines to provide reasonable accommodation to students with disabilities.

In 2015, the government communicated its intention to publish “Draft National Norms and Standards for Resource Distribution for an Inclusive Education System,” which will have a binding effect on the national and provincial governments once they are adopted.[14] In September 2017, the minister of basic education, Angie Motshekga, announced the proposal of new “National Guidelines for Resourcing an Inclusive Education System,” which will only provide guidance but have no binding effect on governmental institutions.[15] At time of writing, neither of these documents have been finalized.

Discrimination Against Children with Disabilities in Education

In August 2015, Human Rights Watch released our report “Complicit in Exclusion”: South Africa’s Failure to Guarantee Inclusive Education for Children with Disabilities,” documenting barriers to inclusive, quality education for children with disabilities in South Africa. Many of the barriers we documented persist today, although Human Rights Watch acknowledges that the government has progressed in some critical areas, as detailed in this submission.[16]

There is a lack of disaggregated and transparent data concerning current numbers of children with disabilities who remain out of school or on waiting lists for public schools. In 2013, the government estimated that more than 500,000 children with disabilities remained out of school.[17] In 2015 and 2016, the government estimated that close to 600,000 children with disabilities remained out of school.[18]

Human Rights Watch notes that various government departments have agreed to improve data collection on children with disabilities.

In its reply to the Committee on the Rights of Persons with Disabilities, the government stated that “Ensuring the enrolment of children with disabilities, who are currently out of school because of impairment, is a work in progress.”[19]

Although South Africa’s constitution protects the right to a basic education, and protects individuals from discrimination on the grounds of race and disability, the government has not adopted legislation that specifically guarantees and the right to inclusive education for children with disabilities.[20] Despite a national policy to provide inclusive education for all children with disabilities, many children with disabilities do not have equal access to inclusive quality primary or secondary education and face multiple forms of discrimination and barriers.[21] South Africa’s Human Rights Commission has deemed that the education system continues to be exclusionary of children with disabilities.[22]

Many children with disabilities face discrimination when accessing public schools. A lack of governmental oversight of waiting lists and placements leaves school officials with the last word on enrolling learners, delaying children’s entry into schools beyond the age of compulsory education. Many mainstream schools deny children with intellectual or developmental disabilities a place in mainstream schools in their communities. Human Rights Watch found that social workers, district education officials, and health workers most often refer children to special schools based on their disabilities. The referrals system, overcrowding, and special schools operating at maximum capacity means children can wait for up to four years at care centers or at home for placement in a special school.[23] The Department of Basic Education’s statistics for 2017 indicate that 11,461 children with disabilities are on school waiting lists. [24] According to civil society and disability rights organizations, this remains an underestimate.[25]

When children are placed on long waiting lists or turned down by special schools, parents face the burden of having to find alternatives for their children, including special schools further away from their homes or communities. Consequently, they are not always able to register children in the most appropriate school. Traveling to schools to register children can be a very costly activity for many parents who already struggle to pay for basic needs.

Once in school, many children with disabilities do not have access to the same curriculum as children without disabilities nor to the necessary materials, including assistive devices and services in Braille or sign language. Many students in mainstream schools face discriminatory physical and attitudinal barriers they need to overcome in order to receive an education.

The Department of Basic Education has made progress in providing resources for learners who are blind or have low vision. In 2014, the government adopted a policy to ensure education officials adequately assess children with disabilities and provide them with the support they need. The government intends to fully implement this policy by 2019.[26] However, our findings indicate that insufficient resources—due in part to a lack of adequate financing allocated to inclusive education by regional governments, and lack of qualified personnel—mean the policy is being implemented inconsistently, particularly in rural areas and under-resourced townships.[27]

Human Rights Watch recommends the Committee ask the government of South Africa:

•         What measures has the government adopted to ensure children with disabilities have access to free quality inclusive education, on an equal basis with children without disabilities, particularly in rural and remote areas?

•         What binding measures has the government taken to ensure provincial governments respect and fulfil the right to inclusive education of children with disabilities?

•         What steps has the government taken to ensure legislation and policy reflect the government’s obligation to provide free education, and its obligation to provide reasonable accommodation to allow children with disabilities to access education without discrimination?

•         Will the government adopt legislation providing specific protections to children with disabilities and guaranteeing inclusive education?

Human Rights Watch recommends the Committee to:

•         Urge the government to ensure access to free and compulsory primary education and to secondary education to children with disabilities, including by developing a detailed plan of action for the immediate realization of free compulsory primary education, in line with its responsibilities under international human rights law.

•         Call upon the government to adopt stronger legal protections for children with disabilities to complement the South African Schools Act. This includes a clear duty to provide reasonable accommodation in public ordinary schools, accompanied by specific provisions that prevent the rejection of students with disabilities from schools in their neighborhood.

Insufficient Protections for Pregnant Students and Adolescent Mothers

South Africa has a high rate of teenage pregnancies: in 2016, around 16 percent of 15 to 19 year old girls and women had begun childbearing.[28] According to the government’s estimates, in 2015, over 85,000 students fell pregnant, representing 3.3 percent of the student population.[29] According to the government, only a third of students stay in school during a pregnancy and return following childbirth.[30]

South Africa has had a policy on the prevention and management of student pregnancies since 2007, which states that school children who are pregnant shall not be unfairly discriminated against and cannot be expelled.[31] However, research by South African NGOs indicates that this policy has not been fully respected by schools, and schools have often discriminated against female students.[32] Research conducted by South African organisations shows that some school officials continue to exclude pregnant girls from school or ask them to shift to other schools, contradicting their obligations to respect student’s right to compulsory education.[33]

In 2018, the government initiated a consultation to develop a new policy on management and prevention of student pregnancies.[34] Human Rights Watch recommends that the government removes any conditional measures –currently applied through the government’s 2007 policy—that impact on girls’ education or deter them from going back to school. For example, students should not have to wait a conditional period until they can return to school.[35]

The new policy should ensure that pregnant students can stay in school while they are medically able to, and that they return to school as soon as they are ready. Schools should also provide basic accommodations for adolescent parents, including: time to breastfeed during breaks, and time off in case a student’s child is ill or to comply with other medical or bureaucratic requirements.[36]

Through its policy, the government should communicate a clear obligation on all education establishments to respect girls’ right to stay in school. Schools should not be able to block a student’s return to school.

Human Rights Watch recommends the Committee ask the government of South Africa:

•         What steps will the government take to fully guarantee, in law and policy, pregnant students and adolescent parents’ right to education?

•         What measures will the government adopt to fully support pregnant students and adolescent parents’ return and retention in school?

•         How will the government ensure provincial governments’ and schools’ compliance with its forthcoming policy on pregnancy management and prevention in schools?

Human Rights Watch recommends the Committee to:

•         Encourage the government to adopt a human rights compliant policy that guarantees pregnant girls’ and adolescent parents’ right to education and includes basic accommodations to ensure parents are supported to stay in school. The government should regularly monitor this policy to ensure schools adhere to its provisions.

Protection of environmental activists (Article 12)

Community activists are on the frontlines advocating for the protection of their communities from the environmental impacts of mining. South Africa is one of the world’s biggest coal producers,[37] and a leading producer of a wide range of metals.[38]  The serious environmental, health, and social impacts of mining, coupled with a lack of transparency, accountability, and consultation, has increased public opposition to mining projects. The response to this opposition has at times resulted in harassment and violence against opponents of mines exercising their rights to a health and a healthy environment.

From March to July 2018, Human Rights Watch interviewed more than 40 community members and environmental activists from Limpopo, KwaZulu-Natal, North West, and Eastern Cape provinces. We also spoke with municipal officials, police, and prosecutors in these provinces.

Several activists and community members said they had received death threats related to their opposition of mining and their concerns over its environmental impacts. Some of the activists who experienced threats said they were also physically attacked or their property was damaged. Another issue we documented in several communities relates to limitations of protests about the right to a healthy environment. Several community members told us that the police, and in some instances a private security company, used teargas and rubber bullets to disperse peaceful protesters. Several of the people we interviewed were injured and one person was killed during these interactions. Activists also said that they are often arrested during protests and charged with “public violence.” Even if most of these cases did not result in a criminal conviction, the risk of being jailed or injured every time they participate in a protest deters some communities from protesting or mobilizing against environmental harm that impacts their communities.

Human Rights Watch recommends the Committee ask the government of South Africa:

•         How does the government respond to violence and harassment against environmental activists in mining-affected communities and ensure timely and impartial investigations?

•         How does the government ensure that activists in mining-affected communities can exercise their rights to health and healthy environment and freely voice their concerns during protests?

Human Rights Watch asks the Committee to:

•         Call upon the government to protect community members and environmental activists from harassment and violence, investigate threats or acts of harassment or violence, prosecute those responsible, and provide an adequate remedy for victims.

•         Call upon the government to ensure that community members and activists are free to safely engage in action to secure or promote respect for their rights to health and a healthy environment, such as through participating in protests.

Protection of Sex workers (Article 1, 7 and 12)

South Africa criminalizes the sale and purchase of sex, as well as related activities such as keeping a brothel or living on the earnings of sex work. However, in part because criminalization may be interpreted as at odds with South Africa’s constitution, decriminalization has been under active discussion for nearly a decade.[39]

In May 2017, the South African Law Reform Commission explored the need for reform of South Africa’s laws related to adult sex work.[40] The Commission recommended maintaining the criminalization of both the sale and purchase of sex, albeit with some modifications, or, as a second choice, that the sale of sex should be decriminalized but purchase and third-party involvement remain illegal (partial decriminalization, also known as the “Nordic” model).

Human Rights Watch is concerned about violations of the ICESCR against sex workers in South Africa under criminalization and recommends that the government instead decriminalize sex work. Criminalization of sex work has a direct impact on the right to health, and the right to self-determination and state’s obligations to “recognize the right to work, which includes the right of everyone to the opportunity to gain his living by work which he freely chooses or accepts, and … take appropriate steps to safeguard this right.”[41] Criminalization also interferes with the right to form unions protected by the convention, including at work, and the right to bodily autonomy.

In May and June 2018, Human Rights Watch interviewed 46 female sex workers in 10 interview sites in Limpopo, Mpumalanga, and Gauteng provinces. Almost all interviewees were unmarried mothers and supporting their children (as well as other dependents) was the main reason they chose and remained in sex work. Interviewees shared their experiences of police harassment and frequent, arbitrary detentions, which appeared to almost always be the result of police profiling, that kept them from their families and their work. Police have used their powers of arrest and detention to coerce sex workers into paying bribes or providing free sex. Many of the sex workers we interviewed were victims of violence, and other crimes such as theft and discrimination, at the hands of clients, men posing as clients, police, and community members. About a third of our interviewees said they had been raped in the past three years. Women told us how it is humiliating, useless or even dangerous to report crimes committed against them to the police who do not take them seriously, who see them as criminals, and who are sometimes the perpetrators of such violence.[42]

On a positive note, the sex workers we interviewed told us they had free, fairly straightforward, and non-discriminatory access to healthcare, including reproductive healthcare and HIV/AIDS treatment. Many remarked on their experiences of improved, friendlier services over the past six years. A driving force behind these improvements has been the South African Department of Health and the South African National AIDS Council (SANAC, which coordinates several government bodies) openly calling for services for sex workers and for decriminalization.[43] A whole-of-government approach towards sex work that recognizes the rights and needs of this vulnerable group would make more sense and help end police practices that obstruct SANAC’s goals of ending the pandemic, for example detaining sex workers without access to antiretroviral drugs.

Human Rights Watch recommends the Committee ask the government of South Africa:

  • How does the government plan to respond to the South African Law Reform Commission’s report on sexual offenses, released in May 2017, which recommended continued full criminalization of consensual adult sex work?

Human Rights Watch asks the Committee to:

  • Call upon the government of South Africa to impose an immediate moratorium on arrests of sex workers, including for loitering, indecent exposure, and other misdemeanors, at least until the future legal status of sex work is settled.
  • Call upon the government of South Africa to, in consultation with sex workers, introduce a new law to parliament removing criminal and administrative sanctions against voluntary, consensual adult sex work and related offenses, such as solicitation, living on the earnings of prostitution, and brothel-keeping.

Protection of Education during Armed Conflict (Articles 13, 14)

South Africa was among the first group of countries to join the Safe Schools Declaration when it was opened for endorsements on May 29, 2015. The Declaration outlines various common-sense actions that countries can take to reduce the negative consequences of armed conflict on education, including using the Guidelines on Protecting Schools and Universities from Military Use with respect to protecting schools from military use.[44]

In July 2018, the United Nations Security Council unanimously adopted resolution 2427 (2018) on children and armed conflict, which encourages UN member states to take concrete measures to deter such use of schools by armed forces and armed groups.

As of June 2018, South Africa was contributing 1,177 troops and 20 staff officers to UN peacekeeping operations around the world. Such troops are required to comply with the United Nations Department of Peacekeeping Operations’ UN Infantry Battalion Manual (2012), which includes the provision that “schools shall not be used by the military in their operations.”[45] South Africa’s peacekeepers are deployed in the Democratic Republic of Congo and Sudan — two countries where the military use of schools has been documented as a problem.

The Peace and Security Council of the African Union has recognized the importance of the Safe Schools Declaration in protecting education during armed conflict and encouraged states to support it, including urging “Member States to endorse and implement” the Declaration in June 2017.

Human Rights Watch recommends to the Committee that it ask the government of South Africa:

  • What steps has South Africa taken in line with UN Security Council Resolutions 2143 (2014), 2225 (2015), and 2427 (2018) to deter the use of schools for military purposes?
  • Are protections for schools from military use included in any policies, rules, or pre-deployment trainings for South Africa’s armed forces?
  • What further steps has South Africa taken to implement the commitments in the Safe Schools Declaration?

Human Rights Watch recommends the Committee:

  • Congratulate South Africa for having led the way in being one of the first states globally to endorse the Safe Schools Declaration.
  • Call upon the government of South Africa to take concrete measures to deter the military use of schools, including by bringing the Guidelines for Protecting Schools and Universities from Military Use during Armed Conflict into domestic military policy and operational frameworks.
  • Encourage the government of South Africa to champion the protection of students, teachers, and schools during armed conflict, and the Safe Schools Declaration, during its upcoming membership of the United Nations Security Council in 2019-2020.

[1] United Nations Treaty Database, “South Africa,” undated, (accessed August 10, 2018).

[2] Joint statement by Section 27 et al., “South Africa Government’s Declaration on Education Clause Mars the Welcome Ratification of the International Covenant on Economic, Social and Cultural Rights,” Johannesburg, January 21,2015.

[3] Department of Basic Education, “School fees and exemption,” undated,

[4] “School fees” are defined as “any form of contribution of a monetary nature made or paid by a person or body in relation to the attendance or participation by a learner in any programme of a public school,” South African Schools Act, Act No. 24 of 2005: Education Laws Amendment Act, 2005,, ch. 1 and s. 1(b).

[5] South African Schools Act, s. 34.

[6] Department of Basic Education, “School Fees and Exemption – No Fee Schools”, undated, (accessed August 9, 2018).

[7] Department of Education, “National Norms and Standards for School Funding,” General Notice 2363, October 12, 1998, (accessed August 5, 2018); Department of Basic Education, “Amended National Norms and Standards for School Funding,” January 16, 2015, (accessed August 5, 2018).

[9] Human Rights Watch found that this is particularly the case in Gauteng and Western Cape provinces where special schools were traditionally set up to cater for white children with disabilities. Within Gauteng Province, many full-service schools are mainly in the outskirts of the city and the majority are Afrikaans speaking.

[10] Provincial Departments of Education are guided by a “Resource Targeting Table” to define needs-based allocations, “National Norms and Standards for school funding,” pp. 27-28. See Department of Basic Education, “Amended National Norms and Standards for School Funding,” Government Gazette no. 38397, 16 January 2015.

[11] Human Rights Watch, “Complicit in Exclusion: South Africa’s Failure to Guarantee Inclusive Education for Children with Disabilities”, August 2015,

[12] Parliamentary Monitoring Group, “Inclusive Education and Special Education: DBE Progress Report; with Deputy Minister, Meeting Summary.”

[13] Department of Basic Education, “Progress Report on Inclusive Education and Special Needs Education, Portfolio Committee on Basic Education Meeting,” 30 May 2017.

[14] Department of Basic Education, “Draft National Norms And Standards For Resource Distribution For An Inclusive Education System,” June 2015, (accessed July 22, 2018).

[15] Department of Basic Education, “Statement by Minister of Basic Education, Mrs. Angie Motshekga on the occasion of the post-CEM Media Briefing,” September 15, 2017, (accessed July 22, 2018).

[16] Human Rights Watch, “Complicit in Exclusion; Alternate Report Coalition – Child Rights South Africa, Complementary Report to The African Committee of Experts on The Rights and Welfare of the Child, A Response to South Africa’s Second Country Report to The African Committee of Experts On The Rights And Welfare Of The Child On The African Charter On The Rights And Welfare Of The Child; United Nations Committee on the Rights of the Child, “Concluding observations on the second periodic report of South Africa,” CRC/C/ZAF/CO/2, October 27, 2016, (accessed July 21, 2018).

[17] Government of South Africa, Initial Country Report to the United Nations on the Implementation of the Convention on the Rights of Persons with Disabilities, 2008 – 2012, approved by Cabinet on 17 April 2013, (accessed July 17, 2018), paras. 204-206.

[18] Department of Basic Education, “Report on the Implementation of Education White Paper 6 on Inclusive Education: An Overview for the Period 2013-2015,” May 2015, (accessed August 15, 2018); Human Rights Watch, “Complicit in Exclusion.”

[19] Committee on the Rights of Persons with Disabilities, “List of issues in relation to the initial report of South Africa, Addendum – Replies of South Africa to the list of issues,” CRPD/C/ZAF/Q/1/Add.1, July 2, 2018, para. 152.

[20] Constitution of the Republic of South Africa, Act No.108 of 1996,

96.pdf, s.29(1)(a) and 2(a).

[21] In 2001, the government adopted “Education White Paper 6: Special Needs Education,” a national policy to provide inclusive education for all children with disabilities within 20 years, but key aspects of the policy have yet to be implemented. Department of Basic Education, “Education White Paper 6: Special Needs Education, Building an inclusive education and training system,” July 2001, (accessed August 5, 2018).

[22] South African Human Rights Commission, “National Human Rights Institution Report on the South African Government’s Initial Country Report under the International Convention on the Rights of Persons with Disabilities,” January 2018, (accessed August 15, 2018), para. 45

[23] Human Rights Watch, “Complicit in Exclusion;” and “South Africa: Little Progress for Youth With Disabilities,” August 19, 2016,

[24] Parliamentary Monitoring Group, “Inclusive Education and Special Education: DBE Progress Report; with Deputy Minister, Meeting Summary,” May 30, 2017, (accessed July 19, 2018).

[25] IESA/R2ECWD Response to the presentation, on progress in the implementation of inclusive education, to the portfolio committee on basic education scheduled for 30 May 2017,” May 30, 2017, (accessed August 15, 2018).

[26] Department of Basic Education, “Policy on Screening, Identification, Assessment and Support (SIAS),” December 2014, (accessed August 4, 2018).

[27] Human Rights Watch, "Complicit in Exclusion;” “South Africa: Little Progress for Youth With Disabilities.”

[28] Statistics South Africa, “Media release: South Africa Demographic and Health Survey,” May 15, 2017, (August 15, 2018).

[29] Department of Basic Education, “Portfolio Committee on Basic Education – Prevention and Management of Learner Pregnancy,” November 14, 2017, powerpoint slide 12. Available in Parliamentary Monitoring Group, “Learner Pregnancies: Basic Education, Social Development, Health Departments briefing,” November 14, 2017, (accessed August 10, 2018).

[30] Ibid.

[31] Republic of South Africa, Department of Basic Education, “Measures for the Prevention and Management of Learner Pregnancy,” 2007, (accessed August 28, 2018), pp. 6 – 7. Despite its existence, schools continue to expel pregnant girls in breach of South Africa’s constitutional laws. Lisa Draga et al, “Basic Education Rights Handbook – Chapter 8 – Pregnancy, (accessed August 28, 2018).

[32] Equal Education Law Centre and Section 27, “Equal Education Law Centre and Section 27 Submission to the Department of Basic Education in Respect of the Draft “National Policy on the Prevention and Management of Learner Pregnancy in Schools,” April 2018, (accessed August 15, 2018).

[33] Lisa Draga, Chandré Stuurman, and Demichelle Petherbridge, “Basic Education Rights Handbook – Education Rights in South Africa – Chapter 8: Pregnancy,” 2017,

[34] Department of Basic Education, “DBE Draft National Policy on the Prevention and Management of Learner Pregnancy in Schools,” 2018, (accessed August 15, 2018).

[35] Republic of South Africa, Department of Basic Education, “Measures for the Prevention and Management of Learner

Pregnancy,” 2007, (accessed August 17, 2018).

[36] Human Rights Watch, Letter to the Department of Basic Education regarding their draft pregnancy policy, August 16, 2018,

[38] United States Geological Survey,

[39] Sexual Offences Act, No. 23 of 1957, ss. 2, 10, 12, 12A, 19, 20; Criminal Procedure Act, No. 51 of 1977, s. 268(c); Criminal Law (Sexual Offences and Related Matters) Amendment Act, No. 32 of 2007, s. 11. The debate over decriminalization of sex work in South Africa began in earnest during the build-up to the FIFA 2010 World Cup in South Africa, though many advocates had been pushing for decriminalization long before 2009.

[40] South African Law Reform Commission, “Project 107: Report on Sexual Offences: Prostitution,” June 2015, (accessed July 18, 2018).

[41] Part III, Article 6.1

[42] The Women’s Legal Centre, a non-profit center that offers free legal advice to women in South Africa, analyzed data from cases of verbal, physical and sexual abuse reported to them by sex workers between 2011 and 2015, and found that over 60% of cases were from police as perpetrators. See Women’s Legal Centre, “Police abuse of sex workers: Data from cases reported to the Women’s Legal Centre between 2011 and 2015,” April 2016, (accessed July 18, 2018), p. 14.

[43] See, for example: Nelson Dlamini, “SANAC calls for decriminalisation of sex work,” SANAC News, March 9, 2018, (accessed July 10, 2018); South African Department of Health, “Health Sector HIV Prevention,” 2016, (accessed July 10, 2018). The Sex Workers’ Programme includes a plan for sex worker community mobilization and engagement, service provision, sensitization of service providers, advocacy, health systems strengthening, and strategic information. Advocacy efforts include a decriminalization campaign (see pp. 7-8).

[44] Safe Schools Declaration,
utvikling/safe_schools_declaration.pdf (accessed August 17, 2018); Global Coalition to Protect Education from Attack, Guidelines for Protecting Schools and Universities from Military Use during Armed Conflict, March 18, 2014,
guidelines_en.pdf (accessed August 17, 2018).

[45] United Nations Infantry Battalion Manual, 2012, section 2.13. Moreover, the 2017 Child Protection Policy of the UN Department of Peacekeeping Operations, Department of Field Support, and Department of Political Affairs notes: “United Nations peace operations should refrain from all actions that impede children's access to education, including the use of school premises. This applies particularly to uniformed personnel. Furthermore, … United Nations peace operations personnel shall at no time and for no amount of time use schools for military purposes.” UN Department of Peacekeeping Operations, Department of Field Support and Department of Political Affairs, “Child Protection in UN Peace Operations (Policy),” June 2017.

Posted: January 1, 1970, 12:00 am

The announcement from the task force gives more choices for detecting potential cancer cells.

© iStock

Black women in the United States are more than twice as likely to die from cervical cancer – a preventable disease – as white women. Yesterday, health insurance coverage for a comprehensive cervical cancer screening strategy was expanded. But will it help address this disparity?

The United States Preventive Services Task Force (USPSTF), an independent panel of private-sector medical experts appointed by the government, plays a big role in determining what health insurance covers. Among other responsibilities, the government-funded entity makes recommendations about preventive services.

Since 2012, the recommended standard of care for women ages 30 to 65 has been a Pap test every three years or “co-testing”– a joint test for the human papillomavirus (HPV), which is linked to cervical cancer, and a Pap test – every five years. Yesterday, the task force added high-risk HPV tests, which identify the strains of HPV that are most likely to cause cervical cancer, to its recommendations, meaning that most health plans will have to cover it without co-pay. Women won’t have to pay out of their own pocket.

Providing options to providers and women is overall a good thing. However, it’s not enough to address the US’s cervical cancer problem. Screenings, while necessary, will not prevent a single cervical cancer death unless women have access to further diagnostic follow up and treatment.

Women of color in particular struggle to access the life-saving care they need once they receive an abnormal screening. The Jeanette Acosta Invest in Women’s Health Act of 2018, which is being reviewed by committees in the US House and Senate, aims to address these disparities. Named after a former Hill staffer who lost her battle with cervical cancer last year at age 32, this bill would, among other things, help fund programs that expand access to cervical cancer screening and follow-up for low-income and uninsured women.

This week’s announcement from the task force gives more choices for detecting potential cancer cells. But detection has to be coupled with follow-up care to save lives. Passing the Jeanette Acosta Invest in Women’s Health Act could be a significant next step. 

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


Video: Oversedation in Nursing Homes across the United States

Nursing homes across the United States routinely give antipsychotic drugs to residents with dementia to control their behavior, despite regulatory prohibitions on this misuse of drugs as “chemical restraints.” This abusive practice remains widespread even though the use of antipsychotics is associated with a nearly doubled risk of death in older people with dementia. 

A year and a half ago in a Texas nursing home, I met an 84-year-old resident with dementia named Felipa Natividad. Her sister, Aurora Suarez, told me that the staff dosed Natividad with Haldol, an antipsychotic drug, to ease the burden of bathing her. “They give my sister medication to sedate her on the days of her shower: Monday, Wednesday, Friday,” Suarez said. “They give her so much she sleeps through the lunch hour and supper.” A review of Natividad’s medical chart confirmed the schedule.

Suarez said she had given her consent to use the drugs because she feared that the staff would not bathe her sister enough if she refused. But when Suarez saw the effect they had, she had second thoughts. She expressed them to the nursing home, but Natividad was taken off the antipsychotics only after she was placed in hospice care. She died a few months after my interview. Her family, seeing her in a reduced state and unable to communicate, wondered whether the drugs had compounded the losses associated with dementia; Suarez thought they contributed to her sister’s decline. “She gets no nourishment,” she told me not long before Natividad died.

The use of antipsychotic drugs as chemical restraints — for staff convenience or to “discipline” a resident — has a long history in nursing homes. In 1975, the Senate released a report, “Drugs in Nursing Homes: Misuse, High Costs, and Kickbacks,” documenting some of the same trends we still see, more than 40 years later. In the past decade, many manufacturers of antipsychotic drugs have faced civil and criminal penalties for misbranding the medications to promote them as appropriate for treating older people with dementia. For more than a decade, the Food and Drug Administration has required manufacturers to place the strongest caution, known as a “black box warning,” on the packaging to advise against the medicines’ use in these patients; such drugs almost double the risk of death for them and have never been approved as safe oreffective for treating symptoms of dementia. Despite the warning, nursing homes still often administer antipsychotic drugs in this manner, sometimes without seeking informed consent first, in violation of federalregulations and human rights norms.

Last year, I visited more than 100 nursing homes across six states as part of Human Rights Watch research on the abuse of antipsychotic drugs in such facilities. Based on government data, we estimate that in an average week, more than 179,000 older people in nursing homes are given antipsychotic drugs without an appropriate diagnosis. The powerful medications were developed to treat schizophrenia, but staff most commonlyadminister them to older people with dementia. Too often, nursing homes use the antipsychotics for their sedative effects rather than to treat a medical problem. It’s true that the prevalence of antipsychotic drugs has declined in recent years, from 1 in 4 nursing home residents without an approved diagnosis in 2012 to 1 in 6 today, but that falsely suggests that a longtime wrong is being righted. Government enforcement of regulations prohibiting the use of the drugs as a chemical restraint or without informed consent remains weak. What’s more, two Trump administration decisions threaten the progress made in curbing the abuse.

These powerful drugs are misused for a variety of reasons, including a misperception by nursing home staff that the medications can help people with dementia; a lack of awareness of their dangers, despite the black box warnings; lack of training in dementia care; and, perhaps most significant, to compensate for understaffing. Nursing homes have been exaggerating levels of nursing and caretaking staff for years, according to an analysis of federal data by Kaiser Health News.

To understand the human toll of the misuse of antipsychotics, in my visits to the nursing homes I interviewed more than 300 people — residents, their families, staff, ombudsmen and doctors, as well as researchers and regulators. In most cases, I did not use their names in my report because they cited a fear of retaliation for speaking openly to me. Human Rights Watch did not identify the individual facilities in its report because the abuse is so pervasive in the industry, and not identifying nursing homes persuaded some staffers to speak with me. Further, the goal was not to expose particular private actors so much as to pressure government officials to enforce minimum health and safety standards for all providers.

Lenora Cline, 88, has lived in a nursing home for years. She has Alzheimer’s disease. Laurel Cline, her daughter, visits her twice a day and assists staff with the care-taking, fearing that otherwise, with the shortage of staff, her mother will not be turned, fed, or changed. She had to persuade the facility to discontinue antipsychotic medications. Before successfully objecting to their use, Ms. Cline said, “Every little thing, they want to put you on psych meds.” Los Angeles, California, August 2017. 

© 2017 Ed Kashi for Human Rights Watch

I found that too often, antipsychotic drugs are administered in harmful, avoidable ways and without the appropriate consent. They are used to control people. Nursing home residents and their family members repeatedly told me they were given these medicines without their knowledge, without awareness of the risks or over their objections. Staff members frankly admitted giving residents these medicines for their own convenience, with some saying they were not aware of an informed-consent policy. Nursing facility staff, pharmacists and medical directors described how doctors commonly prescribed the medications at the request of nursing staff, without even seeing the patients.

[How corporate funding can distort NIH research]

Nursing homes turn to antipsychotic drugs — among other classes of psychotropic medications — because dementia is associated with agitation, irritability, aggression, delusions, wandering, disinhibition and anxiety. While such symptoms are frightening for the people experiencing them and challenging for their caregivers, institutional or otherwise, antipsychotic drugs have not been found to be effective at managing them. In a small number of particularly complex cases, antipsychotic drugs may be appropriate as a last resort. But that is a far cry from how they are used. The American Psychiatric Association concludes that the drugs offer “at best small” potential benefits (such as minimizing the risk of self-harm in people with extreme agitation), while “on the whole, there is consistent evidence that antipsychotics are associated with clinically significant adverse effects, including mortality.”

On paper, federal regulations say that residents have the right to be fully informed of their treatment and to refuse treatment, which should amount to a right to informed consent. But nursing facilities widely ignore the rules, partly because they are rarely held accountable. Reviewing government data from 2014 through mid-2017, Human Rights Watch found that in 97 percent of citations for violations related to antipsychotic drugs, the incidents were determined to have caused “no actual harm” to residents. As a result, in almost no cases did the government impose financial penalties, which correspond to the severity of harm caused by the noncompliance. The prospect of enforcement actions, and the rare sanctions issued, unsurprisingly had little deterrent effect, our analysis found. Nursing homes cited for antipsychotic-drug-related issues did not reduce their rates of drug use any more than facilities not cited.

The way nursing homes obtain or define “informed consent” can also be a factor in the drugs’ misuse. “The use of specific medicines, particularly for somebody with dementia, who lacks the capacity to consent themselves, should require informed consent from their legal representative,” says Jonathan Evans, a former president of the American Medical Directors Association. “But in practice that seldom happens. Not just for that medicine but for any medicine.”

The former administrator of a nursing home in Kansas, who asked to remain anonymous, said: “The facility usually gets informed consent like this: They call you up. They say: ‘X, Y and Z is happening with your mom. This is going to help her.’ Black box warning? It’s best just not to read that. The risks? They gloss over them. They say, ‘That only happens once in a while, and we’ll look for problems.’ We sell it. And, by the way, we already started them on it.”

Despite the limited threat of penalties, many nursing homes have reduced inappropriate use of the drugs in recent years anyway, in response to increased public pressure. By 2012, congressional outrage over the widespread misuse of medications, costing hundreds of millions of Medicare dollars annually, had motivated the Centers for Medicare and Medicaid Services (CMS) to create the National Partnership to Improve Dementia Care in Nursing Homes . While the partnership is only a voluntary initiative offering educational support to train providers, the increased attention has been associated with the reduction in misuse. But it is hard to celebrate the decline when the government elects not to rigorously use the tools it has to protect Americans in nursing homes from irreversible harm.

What’s more, the national reduction may be misleading — and it may not last. First, there’s been a notable uptick in the diagnosis of schizophrenia (a disease that typically develops before age 30) in predominantly elderly nursing home populations. This increase corresponds to the rising pressure on facilities to reduce off-label antipsychotic drug use. There’s no proven link, but the trend does suggest that some homes seek false diagnoses to avoid red flags with the use of these medications. A second concern, recognized by CMS, is that nursing homes are simply replacing this closely watched class of psychotropic medication with other types of sedating drugs with similar health risks.

[Aging is not death. Stop conflating the two.]

Meanwhile, in response to an industry request, the Trump administration in July 2017 changed its guidanceon financial penalties, limiting the instances when inspectors can assess the heaviest fines. The guidance also favors one-time sanctions for harmful noncompliance with the law, rather than a per-day sanction that corresponds to the number of days the harm persists. As a result, in many cases facilities face less-significant consequences for harming residents than they used to. And last November , CMS imposed an 18-month moratorium on Obama-era revisions to some regulations — not updated since 1991 — intended in part to protect residents whose psychotropic medications are prescribed on an “as needed” basis. While it is unclear if those new protections will come into force, it is abundantly clear that this administration’s deregulatory scheme, which it calls “Patients Over Paperwork,” reduces oversight and enforcement in an already dangerously underpoliced industry.

Karla Benkula, daughter of a 75-year-old woman in Kansas, said that when the nursing facility began giving her mother an antipsychotic drug, her mother “would just sit there like this. No personality. Just a zombie.” Laurel Cline, the daughter of an 88-year-old woman in a California nursing home, said she thought the facility used antipsychotic medication to silence people whose symptoms disturbed the staff. Cline said it was obvious that her mother had physiological conditions requiring medical attention. “She would be sitting there, slumped over, mucus everywhere. I would go over and say, ‘She’s sick.’ ” But Cline’s mother wasn’t able to advocate for herself, and Cline had to intervene to demand appropriate medical care for a urinary tract infection, pneumonia and a pulmonary embolism, she said.

“Dementia’s already so hard,” said Ashley Plummer, a licensed practical nurse who works in a Kansas nursing home. “But on top of that, throw [on] a few Seroquels [a common antipsychotic drug], and then you’re just drooling. I mean, it’s taking away even your right to be upset about your disease process. It’s taking away your right to mourn what you’re going through.”

In my interviews, it was disturbing how frequently staff justified administering antipsychotic drugs for “behaviors,” a disconcerting term suggesting that residents could, and should, avoid acting in a disruptive way. A social worker in Texas who used to work in a nursing facility said the underlying issue is that “the nursing homes don’t want behaviors. They want docile.”

Many nursing home staff spoke to me about using antipsychotics to control residents as if it were a perfectly acceptable practice. Others told me that they had become aware that antipsychotic drugs were frequently misused only after the facility’s administration or corporate owners decided to cut down on their use. “It used to be like a death prison here,” a nursing director in a Kansas nursing home told me. “Half our residents were on antipsychotics. Only 10 percent of our residents have a mental illness.” Senior staff at the facility led an effort to reduce the antipsychotic drug rate after receiving financial penalties for administering unnecessary medications and after pressure from the chain’s owners. Another nurse in Kansas said: “We were at 55 percent antipsychotic drug rate before. Now we’re down to only people with a diagnosis [for which the FDA has approved the medications] on the drugs. They have a better quality of life because they’re not sedated.”

[I’m documenting my own Alzheimer’s disease while I still can]

Nursing homes, a mostly for-profit industry, control most aspects of their residents’ lives. Presumably, providers would be more inclined to meet minimum health and safety standards if it cost them dearly not to do so. “In this industry, there is a real cost-benefit analysis,” one long-term-care consultant told me. “If the fine will be $100,000, then they’ll hire the three nurse aides who will cost them about the same amount.”

Antipsychotic drugs may be an appropriate treatment for some people with dementia in nursing homes, but determining that requires a doctor and an informed patient (or proxy). And once told of the significant risks, unlikely benefits and possible alternative treatments — such as behavioral therapy, adjusting routine and environment, or alleviating the source of underlying loneliness, pain, boredom or fear — many people would probably reject the drugs. As one long-term-care pharmacist in Kansas said: “I don’t think antipsychotic drugs are presented well to the family in informed-consent conversations. Because if it were, they’d all reject it.”

An 81-year-old man in a Texas nursing home put it this way to me: “Too many times I’m given too many pills. I can’t even talk. I have a thick tongue when they do that. I ask them not to [give me the antipsychotic drugs]. When I say that, they threaten to remove me from the home. They get me so I can’t think. I don’t want anything to make me change the person I am.”

Hannah Flamm, an immigration lawyer at the Door’s Legal Services Center, reported on the misuse of antipsychotic drugs in nursing homes while she was a fellow at Human Rights Watch.

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