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 GreatFire.org, 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

Video

Pakistan: Garment Workers’ Rights at Risk

Pakistan’s government is failing to enforce laws that could protect millions of garment workers from serious labor rights abuses. 

(New York) – Pakistan’s government is failing to enforce laws that could protect millions of garment workers from serious labor rights abuses, Human Rights Watch said in a report released today.

The 73-page report, “‘No Room to Bargain’: Unfair and Abusive Labor Practices in Pakistan,” documents a range of violations in Pakistan’s garment factories. They include a failure to pay minimum wages and pensions, suppression of independent labor unions, forced overtime, insufficient breaks, and disregarded regulations requiring paid maternity and medical leave. Human Rights Watch also identified problems in the government’s labor inspection system. Pakistan authorities should revamp labor inspections and systematically hold factories accountable for abuses. Domestic and international apparel brands should take more effective measures to prevent and correct labor rights abuses in the factories that produce clothing for them.

“Pakistan’s government has long neglected its obligations to protect the rights of the country’s garment workers,” said Brad Adams, Asia director. “Prime Minister Imran Khan’s government should urgently enforce the labor laws and adopt new policies to protect workers from abuse.”

Human Rights Watch interviewed more than 140 people for the report, including 118 garment workers from 24 factories in Pakistan, as well as union leaders, government representatives, and labor rights advocates. Human Rights Watch conducted most of the field research for this report in Pakistan from June 2017 to December 2018.

In recent years, Pakistani garment workers have expressed serious grievances through strikes and protests. In December 2018, garment workers protested at a training institute in Lahore run by a major Pakistani brand, which they said abused a government incentive program. Workers alleged that the training institute actually operated as a factory, extracting free labor from “trainees.” In May 2017, workers protested after Khaadi, a leading Pakistani apparel brand, fired 32 workers for demanding their rights under Pakistani law.

Garment workers making shirts at a factory in Karachi, Pakistan, February 2015. 

© 2015 Rizwan Tabassum/AFP/Getty Images

In September 2012, a fire at the Ali Enterprises garment factory in Karachi killed at least 255 workers and injured more than 100. Investigations found a series of irregularities and an almost complete absence of fire and safety systems. Survivors reported that the management made no immediate efforts to rescue the workers and instead attempted to save their merchandise first.

Some of the larger factories in Pakistan, which are part of the organized sector of the industry, supply international apparel brands. But most garment factories in Pakistan cater to the domestic market, with the work carried out in small unregistered workshops in unmarked buildings that escape labor inspectors’ scrutiny.

The working conditions in these smaller factories are usually worse than those in larger ones that are more likely to be inspected, Human Rights Watch found. Owners often refuse to pay the statutory minimum wage and hire workers on short-term oral contracts. However, Human Rights Watch documented violations of labor rights including long working hours and extended temporary employment without job security or benefits even in large Pakistani factories, including some that supply garments to international retailers and brands.

Workers, many of them women, also said that they experienced verbal abuse, were pressured not to take toilet breaks, and were even denied clean drinking water. People demanding their rights could be threatened or fired. In two factories, Human Rights Watch documented beatings of workers by managers.

“I know that the payment is below the government minimum wage, but who will hear our complaint?” said a worker who earns about $90 a month after eight years. “If I protest to the manager, I will be fired in a heartbeat.”

Some garment factories producing for domestic brands use home-based workers for special orders or on a seasonal basis. Women working from home are often denied labor law protections. They are not able to join factory unions or unionize, and their work remains unregulated and vulnerable to middlemen, who often refuse to pay minimum wage.

Labor rights activists described union-busting by many large factories. Factory managers often keep workers on short-term contracts to discourage their participation in union activities. Workers also alleged that factory owners manipulate the labor law to create obstacles to register trade unions. Several factories register fake or “yellow” unions consisting of chosen or non-existent employees, making it close to impossible for workers to register real unions.

Pakistan should amend its labor law to comply with international standards including International Labour Organization (ILO) conventions. In the interim, rigorous enforcement of the existing law would go a long way in protecting workers’ rights, Human Rights Watch said. Labor inspectors and other authorities are frequently overstretched, or complicit, and let abuses persist.

Factory owners also need to make a commitment to reform, Human Rights Watch said. The All Pakistan Textile Mills Association (APTMA) and the Pakistan Readymade Garments Manufacturers & Exporters Association (PRGMEA) should ensure compliance with worker protection provisions, and sanction companies that abuse worker rights.

Under the United Nations Guiding Principles on Business and Human Rights, domestic and international apparel brands and factories supplying them have responsibilities to prevent and mitigate human rights abuses in factories and should take remedial action if abuses occur. All businesses, regardless of their size or where they are based, should “avoid causing or contributing to adverse human rights impacts through their own activities, and address such impacts when they occur,” the guiding principles say.

“The Pakistani government should ensure that garment factories stop using union-busting and other strategies to prevent workers from organizing and collectively demanding their rights,” Adams said. “Domestic and international brands should recognize that respecting worker rights makes for more competitive businesses.”
 

Selected Quotes

Absence of Written Contracts

“There is no written contract and the only proof of employment is a card. The factory management marks the attendance of the workers themselves and signs everybody out after nine hours so that if the record is ever inspected, it would appear that the management is complying with the law. In truth, we work longer hours and there is not even sick leave. Salary is deducted if someone is unwell even for a day. There is no maternity leave. Any woman who becomes visibly pregnant is told to leave.”

–Shabana (pseudonym), who has been working for more than eight years at a Lahore garment factory with about 500 workers.

Forced Overtime

“I was fired last Sunday for not working overtime. I have not received a termination letter. On Monday, when I went to work, my name was listed with the security guard at the gate and he told me that I had been ‘gate stopped.’ Gate stopped is the most fearful term in the garment industry since it means that you have been fired and are no longer allowed to enter the factory.”

–Akbar (pseudonym), worker at a factory manufacturing for a domestic brand in Karachi.

Denying Wages and Benefits

“I have been working at this factory for the past eight years. My salary is around 9,000 Pakistani rupees [US$90] per month. I know that the payment is below the government minimum wage, but who will hear our complaint? If I protest to the manager, I will be fired in a heartbeat.”

–Rehana (pseudonym), worker at a factory supplying domestic and international brands in Karachi.

Lack of Breaks

“We are allowed a lunch break for half an hour and two short bathroom breaks. If anyone asks for an additional bathroom break, the managers verbally abuse him and mock him for having a weak bladder. The only way to cope is to not drink water except during lunch.”

–Raza (pseudonym), worker at a factory in Hafizabad district, Punjab province.

Unsanitary Conditions

“There are 300 to 400 workers in the factory crammed in a small space. The factory is filthy, and the cleaning is done rarely. There is no clean drinking water in the factory. If any worker complains about feeling ill or nauseous, the managers give us a painkiller, deduct the cost of the medicine from our salary and tell us to get on with the work.”

–Kamran (pseudonym), worker at a factory in Lahore.

Maternity Leave and Child Care

“There is no maternity leave. Pregnant women are ‘left’ [an industry term for termination] and now whenever a woman worker becomes pregnant, she leaves the job herself to avoid the indignity of being fired.”

–Fehmida (pseudonym), worker at a factory in Karachi.

Home-Based Women Workers

“The work is given to us by a contractor who is our only point of contact. The contractor does not tell us if the garments are being made for an [international] brand or not. The payment varies from 2 to 4 rupees per piece [2 to 4 US cents]. At times, the contractor does not tell us the rate before production saying, ‘We will discuss the rate once you have finished the order.’ We can’t bargain because if we do then the contractor will not give us the order the next time.”

–Zahida (pseudonym), home-based garment worker based in Karachi.

Intimidation and Harassment of Independent Unions

“Union leaders have been harassed and intimidated multiple times. The management has used the local police to have fake [criminal] cases registered against union members and workers. I have been arrested, kept in a police lock-up, and tortured for calling a strike. Now any worker who is seen talking to a union leader is fired.”

–Ghulam Abbas, trade union leader based in Hafizabad district, Punjab.

Posted: January 1, 1970, 12:00 am

People are seen near a bus destroyed by an airstrike that killed dozens of children, in a photograph taken on August 12, 2018 in Saada, Yemen.

© 2018 Mohammed Hamoud/Getty Images

(Beirut) – The Saudi-led coalition and the Houthi armed group engaged in a conflict in Yemen which have turned the country's humanitarian crisis into a full-blown catastrophe, Human Rights Watch said today in its World Report 2019.

Since the armed conflict escalated in March 2015, the warring parties have committed numerous laws-of-war violations, worsened the country’s humanitarian situation, and failed to hold those responsible for war crimes to account. The United States, United Kingdom, France, and other weapons suppliers have risked complicity in abuses through arms sales to Saudi Arabia and other coalition governments. The United Nations has warned that without a dramatic change in the situation, nearly half of Yemen’s population will be at risk of starvation.

“The Saudi-led coalition and Houthi forces have indiscriminately attacked, forcibly disappeared, and blocked food and medicine to Yemeni civilians,” said Sarah Leah Whitson, Middle East and North Africa director at Human Rights Watch. “Governments around the globe can either do nothing while millions sink closer toward famine or use the leverage at their disposal to press the warring parties to end their abuses and impose sanctions on those obstructing aid.”

In the 674-page World Report 2019, its 29th edition, Human Rights Watch reviewed human rights practices in more than 100 countries. In his introductory essay, Executive Director Kenneth Roth says that the populists spreading hatred and intolerance in many countries are spawning a resistance. New alliances of rights-respecting governments, often prompted and joined by civic groups and the public, are raising the cost of autocratic excess. Their successes illustrate the possibility of defending human rights – indeed, the responsibility to do so – even in darker times.

Yemen’s armed conflict has taken a terrible toll on the population. Fighting has killed and wounded thousands of civilians. Millions suffer from shortages of food and medical care, yet the warring parties continue impeding aid. Across the country, civilians suffer from a lack of basic services, a spiraling economic crisis, and broken governance, health, education, and judicial systems.

The coalition has conducted scores of indiscriminate and disproportionate airstrikes killing thousands of civilians and hitting critical infrastructure and other civilian structures in violation of the laws of war. Houthi forces have recruited children, used landmines and fired artillery and rockets indiscriminately into cities such as Taizz and Aden, and into Saudi Arabia. Houthi forces, government-affiliated forces, and the United Arab Emirates (UAE) and UAE-backed Yemeni forces have arbitrarily detained or forcibly disappeared scores of people. Houthi forces have held people as hostages. Yemeni officials in Aden have beaten, raped, and tortured detained migrants and asylum seekers from the Horn of Africa, including women and children.

The coalition has failed to conduct credible investigations into abuses, and coalition member countries have sought to avoid international legal liability by refusing to provide information on their forces’ role in unlawful attacks. The Houthi armed group also has not punished its commanders responsible for war crimes. Senior officials implicated in abuses remain in positions of authority across the country.

One cost of Yemen’s war has been the closing space for civil society groups. Warring parties have arrested, harassed, threatened, and forcibly disappeared Yemeni activists, journalists, lawyers, and rights defenders. Women activists, who have played a prominent role documenting abuses and advocating for their end, have been threatened, subjected to smear campaigns, beaten, and detained. Humanitarian aid workers have also been killed, wounded and detained.

“Rather than risk complicity in the next airstrike on a wedding or on a bus filled with children, the US, UK, and France should tell Saudi Arabia that weapons sales won’t continue until war crimes stop and those responsible are prosecuted,” Whitson said.

Posted: January 1, 1970, 12:00 am

Chinese President Xi Jinping gives a speech for the 40th Anniversary of Reform and Opening Up at The Great Hall Of The People on December 18, 2018 in Beijing, China. 

© 2018 Andrea Verdelli/Getty Images
(New York) – China’s government tightened its grip on all aspects of society in 2018, Human Rights Watch said today in its World Report 2019. President Xi Jinping’s abusive rule deepened, as evidenced by the constitutional amendment removing presidential term limits, and the oppression of Turkic Muslims in Xinjiang.

“China under President Xi has been a threat to human rights both at home and abroad,” said Sophie Richardson, China director. “Countries and international institutions will need to push back against the repressive policies of a rising superpower.”

China under President Xi has been a threat to human rights both at home and abroad.

Sophie Richardson

China Director

In the 674-page World Report 2019, its 29th edition, Human Rights Watch reviewed human rights practices in more than 100 countries. In his introductory essay, Executive Director Kenneth Roth says that the populists spreading hatred and intolerance in many countries are spawning a resistance. New alliances of rights-respecting governments, often prompted and joined by civic groups and the public, are raising the cost of autocratic excess. Their successes illustrate the possibility of defending human rights – indeed, the responsibility to do so – even in darker times.

The Chinese government dramatically stepped up repression against the 13 million Turkic Muslims in China’s northwestern Xinjiang region. Authorities have carried out mass arbitrary detention, torture, and mistreatment. About 1 million Turkic Muslims are being held indefinitely in “political education” camps, where they are forced to learn Mandarin Chinese and praise the government and Communist Party. Outside the detention facilities, authorities severely restrict movement, politically indoctrinate people, and have over a million officials to monitor residents by regularly staying in their homes.

In 2018, authorities continued politically motivated prosecutions of human rights lawyers and activists. Lawyer Wang Quanzhang has been detained for “subversion of state power” since August 2015 amid a national crackdown on rights lawyers. In July, a court sentenced veteran democracy activist Qin Yongmin to 13 years in prison for “subversion of state power.” Huang Qi, a longtime activist detained since November 2016 on charges of “leaking state secrets,” suffers from serious health conditions without adequate treatment.

Authorities also expanded their assault on the freedom of expression, detaining journalists for covering human rights issues, tightening ideological control over universities, and expanding the internet censorship regime to suppress political information and ostensible “vulgar” content. As the #MeToo movement gained momentum in China in 2018, censors deleted social media posts exposing sexual harassment linked to prominent men. In August, the media reported that Google had been developing a censored search engine app for the Chinese market.

Central and Hong Kong government authorities sought to limit rights in the territory. The government disqualified further pro-democracy figures from running for seats on Hong Kong’s Legislative Council, or Legco. In September, it took the unprecedented step of banning the nonviolent, pro-independence Hong Kong National Party, saying the group’s political stance “poses a real threat to national security.” In October, authorities rejected without explanation a Financial Times journalist’s application to renew his work visa after he hosted a talk by a pro-independence activist.

China’s growing global power makes it an exporter of human rights violations, including at the United Nations, where in 2018 it sought to block critics. In March, the UN Human Rights Council (HRC) adopted a resolution proposed by China that focused on China’s vision for “win-win cooperation” and omitted any mention of accountability for rights violations. China’s “One Belt, One Road” development initiative pressed ahead without safeguards or respect for human rights in many participating countries. Major Chinese technology companies, including Huawei, iFlytek, and ZTE, which have close relations with the government and contribute to police mass surveillance efforts, sought to expand abroad in 2018.

In one of its only human rights concessions all year, Chinese authorities allowed Liu Xia, an artist and the widow of 2010 Nobel Peace Prize winner Liu Xiaobo, to leave for Germany in July after eight years of legally baseless house arrest.

“More than ever, protecting human rights inside and outside China requires governments and institutions working together to end Xi’s abuses,” Richardson said. “No one should be giving a green light to China’s rampant violations.”

Posted: January 1, 1970, 12:00 am

Activists hold a candle light vigil for victims of the extra judicial killings in the drug war of the government in front of a church in Manila on September 16, 2016.

© 2016 TED ALJIBE/AFP/Getty Images
(New York) – Philippine President Rodrigo Duterte’s administration heightened its repression in 2018, Human Rights Watch said today in its World Report 2019.

The government’s murderous “war on drugs” expanded to cities outside Manila. Attacks escalated against activists, journalists, and critics of the government. Donor governments should intensify pressure on Duterte to end targeted killings and to drop politically motivated criminal cases.

“President Duterte has used the killing of thousands of largely poor drug suspects as a tool to bolster his popularity,” said Brad Adams, Asia director. “He’s also targeting anyone who might undermine that popularity, from outspoken senators to journalists documenting his abuses.”

President Duterte has used the killing of thousands of largely poor drug suspects as a tool to bolster his popularity.

Brad Adams

Asia Director

In the 674-page World Report 2019, its 29th edition, Human Rights Watch reviewed human rights practices in more than 100 countries. In his introductory essay, Executive Director Kenneth Roth says that the populists spreading hatred and intolerance in many countries are spawning a resistance. New alliances of rights-respecting governments, often prompted and joined by civic groups and the public, are raising the cost of autocratic excess. Their successes illustrate the possibility of defending human rights – indeed, the responsibility to do so – even in darker times.

The extrajudicial killings of drug suspects expanded to urban areas outside the capital in 2018. Nationwide, the Philippine National Police (PNP) said, nearly 5,000 drug suspects were killed between July 2016 and November 2018 during anti-drug operations, although domestic rights groups assert that police and alleged police agents killed thousands more.

The administration stepped up its attacks against “drug war” critics, including activist groups, the Catholic church, opposition politicians, and the media. In December the authorities brought politically motivated charges for tax evasion against the critical news website Rappler and its editor, Maria Ressa.

Duterte targeted the Catholic church, which has criticized the “drug war,” accusing bishops of corruption and labeling most Filipino priests homosexuals. In December, he urged the public to kill “useless bishops” because “all they do is criticize” the government.

The government vilified activist groups, calling them communists, and terrorists. In March, the foreign affairs secretary accused human rights groups of being “unwitting tools” of drug syndicates. In November, gunmen killed a rights lawyer, Benjamin Ramos, in Negros Occidental. Ramos represented the families of victims of a recent massacre of peasants in the province. There were violent attacks against human rights activists, lawyers, journalists, environmentalists, indigenous group members, peasants, and farmers.

Senator Leila de Lima, Duterte’s most prominent critic, has remained in jail since her arrest in February 2017 on trumped-up drug charges. Another senator, Antonio Trillanes IV, was also threatened with arrest in September for criticizing Duterte. In May, acting on a petition by the government, the Supreme Court ousted Chief Justice Maria Lourdes Sereno for her criticism of the “drug war” and other policies of the Duterte administration.

There were two rare triumphs of accountability in the Philippines in 2018. One was the conviction in September of retired Maj. Gen. Jovito Palparan and two others for the 2006 kidnapping and illegal detention of two student activists. In November, three police officers were convicted for the August 2017 “drug war” murder of 17-year-old Kian delos Santos.

“President Duterte has provided no indication of any letup in his murderous drug war,” Adams said. “Foreign donors should support efforts by Philippine institutions, groups and the media who are pressing the government to stop the killings and bring those responsible to justice.”

Posted: January 1, 1970, 12:00 am

Attendees hold up smartphones and wave Malaysian national flags and People's Justice Party flags at a Pakatan Harapan alliance event in Petaling Jaya, Selangor, Malaysia, on Wednesday, May 16, 2018. 

© 2018 Sanjit Das/Bloomberg via Getty Images
(New York) – Malaysia’s human rights situation improved significantly in 2018 after the election of a new government that ran on a manifesto promising make the country’s rights record “respected by the world,” Human Rights Watch said today in releasing its World Report 2019. The government’s commitment to reform is being tested, however, by political backlash from members of the former ruling coalition and conservative religious leaders determined to resist change.

The newly elected prime minister, Mahathir Mohammed, told the United Nations General Assembly in September that a “New Malaysia” would abide by “the principles of truth, human rights, the rule of law, justice, fairness, responsibility and accountability, as well as sustainability.” He also pledged to ratify all remaining core UN instruments related to the protection of human rights.

“Since the landmark election last May, Malaysia has been a bright spot for progress on human rights in Southeast Asia,” said Phil Robertson, deputy Asia director. “But it will only remain that way if the government stops backtracking and follows through on its promises for human rights reforms.”

Since the landmark election last May, Malaysia has been a bright spot for progress on human rights in Southeast Asia.

Phil Robertson

Deputy Asia Director

In the 674-page World Report 2019, its 29th edition, Human Rights Watch reviewed human rights practices in more than 100 countries. In his introductory essay, Executive Director Kenneth Roth says that the populists spreading hatred and intolerance in many countries are spawning a resistance. New alliances of rights-respecting governments, often prompted and joined by civic groups and the public, are raising the cost of autocratic excess. Their successes illustrate the possibility of defending human rights – indeed, the responsibility to do so – even in darker times.

The new government announced plans to abolish the death penalty and established a moratorium on executions. It said that the much-abused Sedition Act will be revoked and announced a freeze on its use pending repeal. That freeze proved short-lived, however, with the government lifting it in December in the wake of an outbreak of violence at a Hindu temple. The government also announced that it would create an Independent Police Complaints and Misconduct Mechanism to end torture and killings of suspects in police custody, and excessive use of force by police when pursuing and apprehending suspects.

The government’s effort to repeal the Anti-Fake News Law passed by the previous Barisan Nasional government was blocked by the appointed Malaysian Senate. The Senate, controlled by allies of the former ruling coalition, could seek to block further reforms.

While the government has pledged to raise the minimum age for marriage to 18 under both civil and Sharia (Islamic law), progress has been slow and exceptions to the minimum marriage age remain even in those states where the law has been reformed. The new government has also committed to improve the situation for refugees and asylum seekers but has not yet taken concrete steps to do so.

The government backtracked on a commitment to ratify the International Convention on the Elimination of All Forms of Discrimination in response to claims by opposition parties and Malay activists that doing so would undermine privileges for the Malay population that are enshrined in the Constitution.

Discrimination against lesbian, gay, bisexual, and transgender (LGBT) people remains pervasive even with the change in government. Federal law punishes “carnal knowledge against the order of nature” with up to 20 years in prison, while numerous state Sharia laws prohibit both same-sex relations and non-normative gender expression, resulting in frequent arrests of transgender people.

The new minister for religious affairs has called for an end to workplace discrimination against LGBT people. But he also made clear that any visible expression of an alternative sexuality or gender identity will be prosecuted under existing laws, and that he supports programs, broadly discredited, designed to change personal sexual orientation. On September 21, Prime Minister Mahathir stated that Malaysia “cannot accept LGBT culture.”

“The new government has made impressive commitments to improve the human rights situation in Malaysia, but too much is still only on paper,” Robertson said. “The government should act on those commitments in Parliament so that all communities in Malaysia benefit.”

Posted: January 1, 1970, 12:00 am

People take part in the 2018 Women's March rally in Jakarta on March 3, 2018. The participants were demonstrating for equal rights and an end to violence against women.

© 2018 BAY ISMOYO/AFP/Getty Images
(Jakarta) – Indonesian President Joko “Jokowi” Widodo’s administration took few steps in 2018 to protect the rights of marginalized groups in Indonesia, Human Rights Watch said today in its World Report 2019.

In August 2018, Jokowi issued a plea for religious tolerance in the context of continuing harassment and discrimination against religious and gender minorities. But authorities still arrest and prosecute people under the blasphemy law, and courts sentenced six to prison in 2018. Lesbian, gay, bisexual, and transgender people in Indonesia have faced increasingly violent, intimidating, and humiliating police raids that violate their rights to privacy.

“President Jokowi chose not to spend political capital by undoing discriminatory regulations or protecting minorities from abuse,” said Elaine Pearson. “It’s not only increasing the risks among marginalized groups but encouraging Islamist militants.”

President Jokowi chose not to spend political capital by undoing discriminatory regulations or protecting minorities from abuse.

Elaine Pearson

Australia Director

In the 674-page World Report 2019, its 29th edition, Human Rights Watch reviewed human rights practices in more than 100 countries. In his introductory essay, Executive Director Kenneth Roth says that the populists spreading hatred and intolerance in many countries are spawning a resistance. New alliances of rights-respecting governments, often prompted and joined by civic groups and the public, are raising the cost of autocratic excess. Their successes illustrate the possibility of defending human rights – indeed, the responsibility to do so – even in darker times.

Indonesia’s Commission on Violence against Women (Komnas Perampuan) reported that hundreds of discriminatory national and local regulations are harming women. They include local laws compelling women and girls to wear the jilbab, or headscarf, in schools, government offices, and public spaces.

The Jokowi administration failed to lift restrictions on foreign journalists from visiting Papua and West Papua provinces, and Indonesian journalists face controls and surveillance there. This hindered efforts to report on an attack by Papuan militants in December that killed at least 17 people.

The Jokowi government took some positive steps in addressing land-grabbing to curb dispossession. In February, with World Bank support, Jokowi initiated a program to register all land in Indonesia, including disputed areas, by 2025. He announced a moratorium on oil palm plantations, which are linked to deforestation, climate change, and abuses against indigenous peoples, instructing his ministries to stop issuing new plantation permits on state forests until 2021.

Many indigenous and peasant rights groups contend that moratoriums and land certification alone are insufficient to resolve land disputes. In 2017, the Agrarian Reform Consortium documented 659 land-related conflicts, affecting more than 650,000 households.

The Indonesian government has taken promising steps to end shackling of people with mental health conditions, reducing the number  who are shackled or locked up in confined spaces from nearly 18,800, the last reported figure, to 12,800 in July, according to government data.

“Some progress on land rights and disability rights is encouraging, but President Jokowi should redouble his efforts to protect the rights of all Indonesians at risk,” Pearson said.

Posted: January 1, 1970, 12:00 am

Older woman leaving a community center with programs for older people in East London. 

© 2018 Stephanie Hancock for Human Rights Watch
(London) – Older people in England are at risk of not getting adequate assistance to live independent, dignified lives due to uneven assessments for social services, Human Rights Watch said in a report released today. In doing so, the United Kingdom government risks failing to secure older persons’ rights to health, and to live in the community.

For the 35-page report, “Unmet Needs: Improper Social Care Assessments for Older People in England,” Human Rights Watch spoke with older people and their relatives in 12 cities and towns across England. Some said that assessors appeared not to understand their disabilities and support needs. In other cases, before beginning an assessment, assessors announced that services would be cut regardless of an individual’s actual need.  And in some cases services were denied or cut significantly, affecting older people’s health and wellbeing. 

“Older people don’t always get fair assessments of the support they need to live dignified, independent lives,” said Bethany Brown, researcher on older people’s rights at Human Rights Watch. “Older people’s health and wellbeing can be harmed if they don’t get the services they’re entitled to.”

Human Rights Watch interviewed 104 people, including 27 people between the ages of 58 and 94 and 20 family caregivers between September 2017 and November 2018. Human Rights Watch focused on England, as each nation in the United Kingdom has its own social care system.

According to the UK’s independent government-established statistical service, the number of people in England age 65 and over is projected to increase by over 20 percent from 2014 to 2024.

Under the Care Act of 2014, anyone who meets financial and needs criteria is entitled to government-supported services known as social care. Services can include in-home assistance such as for preparing meals, dressing, and bathing.

The UK’s Local Government and Social Care Ombudsman’s 2018 annual report on complaints found a 140 percent increase in social care complaints since 2010. This increase indicates serious concerns with assessments and oversight, Human Rights Watch said.

Witness: “If We’re Experiencing It, So Is Everyone Else”

Witness: “If We’re Experiencing It, So Is Everyone Else”

Farhaz’s family knew something was wrong but didn’t know what. His dementia is severe. Social care to support older people like Farhaz is increasingly under threat from official assessments that can be rushed, incomplete, or inaccurate. Farhaz's family tells Human Rights Watch about their fight to get their father the care he so desperately needs. 

Day-to-day responsibility for providing social care services in England rests primarily with local authorities. Although social care assessments often have significant impact on older people’s health, wellbeing, and independence, no central government agency monitors the assessments. Oversight is left to the local authorities delivering the services. 

While some people interviewed were able to successfully bring an appeal, their services were reduced before an appeal was decided.  Some older people faced physical, psychological, and financial hardships as a result.

Mary, 76, lives in a small town near London, and has care needs. Although she has difficulty gripping and has used a walker for many years, in 2016, an assessor cut her services and falsely reported that she had carried a heavy tray across her kitchen during the assessor’s visit. Although she successfully challenged the inaccurate assessment, the appeals took a year and led to the loss of her caregiver of many years. “After the start of this review, [she] was so uncertain as to whether she would have a job at the end of the review that she gave her notice,” she said.

Social care is funded by a mix of local taxes -- notably council tax -- and general central government funding. According to the UK National Audit Office, an official agency monitoring public spending, central government funding for local governments to deliver social care and other services fell by almost half between 2010-11 and 2017-18. The cuts are part of national austerity measures to reduce spending and increase taxes following the 2008 global financial crisis.

The UK government has obligations under domestic and international law to ensure the rights of older people to live independently in the community, to health, and to private and family life, Human Rights Watch said. 

The UK government should ensure that older people receive the support they need and are entitled to by regularly monitoring social care assessments to ensure accuracy and fairness. Authorities should also ensure that people continue to receive services during complaints and appeals processes. 

“Many older people in England desperately need these services and have no alternatives, so serious cuts to social services funding and an improper assessment can cause tangible risks to their health and wellbeing,” Brown said. “Oversight is a crucial part of a properly functioning system, and the UK government should make sure that local authorities consistently conduct fair and accurate assessments and deliver appropriate services.”

Posted: January 1, 1970, 12:00 am

 

Summary

[They] just came in with an agenda of cutting my 15 hours per week to 6.5. They announced it. They told me ‘We are not there to give you more, but we are going to cut it.’ They had worked out that that was what I needed [before they arrived].
—Mary Redman, 76, December 2017

Older people in England like Mary Redman can face considerable challenges in accessing the social services which they need to live independent, dignified lives, and to which they are entitled. In interviews with Human Rights Watch in 2017 and 2018, older people expressed concerns with how local officials determined their eligibility for social support. Such services include in-home assistance such as preparing meals, dressing, and bathing. In some cases, older people told Human Rights Watch that they were denied crucial services or had services significantly reduced, causing their health and wellbeing to decline. 

Some of those interviewed said that assessors appeared not to understand their disabilities and social care needs. In other cases, before beginning an assessment, assessors announced that services would be cut regardless of an individual’s actual need.

Under England’s Care Act 2014, any individual who meets financial and needs criteria is entitled to government-supported social support, known as social care. These services aim to promote wellbeing and independence, in addition to health and safety, by “supporting people to live as independently as possible, for as long as possible.”

Based on interviews with 104 people, this report documents improper assessments for individual older people’s social care in England, and the lack of oversight from the national government, which is responsible for implementation of the Care Act. The report focuses on England, as each nation in the United Kingdom has its own social care system. According to the UK Office for National Statistics, the number of people in England aged 65 and over is projected to increase by over 20 percent over the next 10 years.

Despite working with the Care and Support Alliance, which represents over 80 of Britain’s leading charities campaigning for a properly funded care system, requests to the British Association of Social Workers, and other extensive outreach, Human Rights Watch was not able to interview social workers or assessors for this report. 

The large number of complaints filed with the UK’s Local Government and Social Care Ombudsman regarding social care assessments suggests serious concerns with assessments and mechanisms to ensure their quality. The Ombudsman’s 2018 annual report, released in November 2018, documented a 140 percent increase in social care complaints over the eight-year period since 2010 and indicated that social care assessments are now among “the biggest areas of complaint.” The report noted that the number of complaints indicated “problems with whole systems and policies,” rather than “one-off mistakes.” The Ombudsman accepts complaints about local government councils and all adult social care providers, including home care agencies.

Day-to-day responsibility for providing social care services in England rests primarily with local authorities. Social care assessments often have significant impact on older people’s health, wellbeing, and independence because they are the gateway to services and supports for independent living. Yet no central government agency monitors assessments for social care services. Local authorities make decisions about care without any outside oversight. This puts the onus on individuals who may be going without needed supports to challenge their assessment with the local authority, bring litigation or file a complaint with the ombudsman’s office.

While some of those Human Rights Watch interviewed were able to bring an appeal and get the social care to which they are entitled, the process often led to delays in receiving services and many described facing physical, psychological, and financial hardships as a result. The decision to reduce support services became effective even before individuals had the chance to appeal.

Social care is funded by a mix of local taxation (notably council tax) and general central government funding allocated to local authorities. Central government funding to local authorities has been cut in recent years. According to the UK National Audit Office, the body charged with scrutinizing public spending for Parliament, the funding local governments receive from the central government to deliver social care and other services has fallen by almost half between 2010-11 and 2017-18. The funding reductions are part of austerity measures by the central government to cut spending and increase taxes following the global 2008 financial crisis. In a 2017 study by the Care and Support Alliance, which represents over 80 of Britain’s leading charities campaigning for a properly funded care system, social workers and others who conduct needs assessments reported they faced pressure from managers and officials responsible for funding decisions to reduce social care costs.

The UK government has obligations under domestic law in the Care Act 2014 and the Human Rights Act, and under international law to ensure the rights to live independently in the community, to health, and to private and family life. The UK government should ensure that older people receive the support they need and are entitled to by regularly monitoring social care assessments to ensure accuracy and fairness, and that services continue during appeals. 

 

Methodology

This report is based on 104 individual in-person and telephone interviews. Human Rights Watch interviewed 27 older people between the ages of 58 and 94 and 20 family carers in England between September 2017 and November 2018, in 11 local government authorities: Tower Hamlets, Cumbria, Bournemouth, North Yorkshire, Hertfordshire, South Derbyshire, Essex, Barking and Dagenham, Salford, Dorset, and Surrey. Wales, Scotland and Northern Ireland have their own social care systems and fall outside the scope of this research. Based on requests for confidentiality, Human Rights Watch has used pseudonyms for some interviewees. Pseudonyms are indicated by a name in quotation marks.

Human Rights Watch also interviewed 51 representatives of nongovernmental organizations, known in the UK as charities, as well as lawyers, service providers, academics, policy experts, staff from the National Health Service, Clinical Commissioning Group staff responsible for planning local health care, and current and former local government staff. We also conducted group interviews arranged by partner organizations in supported housing accommodations and community centers in East London, Bournemouth and Poole.

Despite working with the Care and Support Alliance, which represents over 80 of Britain’s leading charities campaigning for a properly funded care system, requests to the British Association of Social Workers, and other extensive outreach, Human Rights Watch was not able to interview social workers or assessors for this report. 

We sent letters to the 11 local governments where we conducted research, as well as to the Department of Health and Social Care, and the Ministry of Housing, Communities and Local Government in England, requesting answers to questions related to the findings of this report. Three local authorities, Dorset County Council, North Yorkshire County Council, and the London Borough of Barking & Dagenham responded to our questions. Their responses are in Annex 1. The other local government authorities and the ministries did not respond.

 

Background on Social Care in England

Local government authorities in England are required by the 2014 Care Act to carry out needs assessments “for any adult with an appearance of need for care and support...”[1] These services aim to promote wellbeing and independence, in addition to health and safety, by “supporting people to live as independently as possible, for as long as possible.”[2]  Assessments are typically carried out by a social worker employed by a local government authority. Under the Care Act, all local authorities must use the same eligibility standards in social care needs assessments and must fund at least part of an individual’s social care support if a person has less than £23,250 (approximately US$29,415) in savings and assets. England has 152 local authorities, all of which have social care responsibilities.

However, some research has found that not all people may be getting the care to which they are entitled. According to 2018 research published by Age UK, a nongovernmental

organization advocating on behalf of older people, 1.4 million older people in England are living with unmet needs for social care.[3] A July 2017 longitudinal survey (repeating surveys of the same variables over time) by Ipsos MORI, a market research company in the UK, found that 73 percent of those qualifying for care under the Care Act do not receive services for at least some of their needs.[4] According to Age UK, unmet need for support for vital daily activities among older people in England has increased by 48 percent since 2010.[5]

According to experts at Age UK and The Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK, when assessments do not accurately recognize a person’s support needs, or those needs otherwise go unmet, there can be increased pressure on England’s overstretched National Health Service to fill the gap.[6] The absence of social care can lead to older people being hospitalized and lengthen stays even after becoming medically fit for discharge.

 

The Context of Social Care Budgeting

According to some expert reports, the reduction in social care for older people in the UK appears to be linked to financial considerations, including fewer resources available at the local level. For example, the Association of Directors of Adult Social Services, a membership body of the directors of adult social care at the local government level in England, reported in its 2018 budget survey that “75 percent of directors reported that reducing the number of people in receipt of care is important or very important for them to achieve necessary savings.” For this survey, directors were asked about levels of confidence in being able to meet specific duties in the coming year. Only 34 percent were fully confident that they would be able to meet their obligations under the Care Act and other regulations.[7]

In 2016, the Chief Executive of the Care Quality Commission (CQC), the independent regulator of all health and social care services in England, warned that adult social care in England was “approaching a tipping point,” noting that “increased need” was colliding with “reduced access.”[8] In 2017, [CQC] warned that “the entire health and social care system is at full stretch” and that what was needed was “a long-term sustainable solution for the future funding and quality of adult social care.”[9] That same year, three prominent think tanks warned that social care would be facing a £2.5 billion funding gap for the year 2019-20.[10]

A day care center employee who has been working at the same London center for more than 11 years described increasing demand for services at his center for people losing social care at home. Adult social day care often provides social care supports, social activities, meals, and some health-related services. "Now, decisions are based on finances, not needs. About five years ago, we started seeing people with higher and higher levels of need. We’re getting a lot of people [referred] to us, with loads of disabilities … we’ve always got referrals, but now [demand is so high] we can’t even pick up the phone."[11]

 

Problems with Older People’s Social Care Assessments

Mary Redman

Mary Redman, 76, lives in a small town near London, has osteoarthritis and depression and had benefitted from social care since she was in her 30s to support her to shop, attend doctors’ appointments, and participate in community groups, among other activities. She told Human Rights Watch that during a 2016 assessment, the assessors told her they would cut her services before even assessing her level of need. She said the uncertainty of appealing the assessment decision compelled her assistant to look for other work and contributed to depression, causing her significant hardship. She explained:

[They] just came in with an agenda of cutting my 15 hours per week to 6.5. They announced it. They told me ‘We are not there to give you more, but we are going to cut it.’ They had worked out that that was what I needed [before they arrived].[12]

In addition to this announcement, Redman said her assessment contained stark inaccuracies. Although she has difficulty gripping and has used a walking frame [walker] for many years, the assessment report stated that Redman carried a heavy tray across her kitchen, which she said never happened. Redman successfully challenged the assessment, yet the process took a year and led her personal assistant of 30 years to quit and look for other work:

It has ended up with me losing one of my most treasured friends, who was my personal assistant. [She] helped around the house. [Osteoarthritis] affects hands. I can’t grip, and it’s painful, also in my spine and feet. She did light housework. We would go shopping one day a week to stock up. She would go with me to hospital appointments, or other things I needed help accessing … After the start of this review, she was so uncertain as to whether she would have a job at the end of the review that she gave her notice.

It was all a battle to appeal [the assessment]. The effect on me if I don’t get out. The effect on me with keeping my house clean. Even the effect on me with keeping myself clean. I suppose you might call it depression …

I tend to get infections in my feet more often [after foot care was cut]. I hadn’t realized that it was an infection until I collapsed and took an ambulance to the hospital.[13]

Redman returned home from the hospital and was successful in her appeal.

“Barbara,” the director of a social care program in London for more than 20 years, described a similar situation during a 2012 assessment of her mother, who had advanced dementia:

The social workers [with the local authority] did that assessment. They came in and said [her care] was being reduced. The assessment was supposed to be about my mum’s needs, and bespoke. With [the local authority’s] cuts, they were one-size-fits-all.[14]

Joy Watson

Joy Watson, 59, who lives outside Manchester, was diagnosed with dementia in 2013. The loss of services following a social care reassessment resulted in serious hardship while Watson appealed. Her appeal did not fully reinstate her services, so she pursued her case in court. She told us through tears about losing funding for her carer and support worker after what she believed to be an incorrect assessment in 2016:

Right from the onset, I realized that the person doing the assessment didn’t know anything about dementia. She was more [occupational therapy] oriented. She was very keen to know whether I could dress myself or walk, but she didn’t take into account any of my dementia symptoms. My support worker [at that time] was trying to explain to her the problems I have with dementia. [But] her questions were geared to more typical [physical] things.

The worst thing was I lost all my benefits. I had had them [her support worker and her husband as a caregiver] for many years. I had personality disorder and depression. When I got diagnosed with dementia, I was worse! The day after I lost all my benefits, my husband lost his carer’s allowance.[15]

Watson appealed with the local government authority, but her original level of services was not restored. She appealed again, to a court, with the assistance of a lawyer specializing in public law and older people’s rights:

We took it to court … For seven months, my life went on hold. I was borrowing from people to pay bills, my son was paying our bills, and I didn’t know what our future was. [The court case was expected to take] three months, then six months, seven months …

Watson was successful in her legal appeal. Reflecting on her experience, she told us:

People who make these decisions, the professional people, I don’t think they realize what the consequences are for people with dementia. I don’t think they understand the effect it has, the uncertainty, the fear of the future.[16]

“Farhaz”

“Mohammed,” 27, told Human Rights Watch that his father, “Farhaz,” now 80, began receiving social care from his local authority in London when he was diagnosed with vascular dementia 15 years ago. At that time, he had services to help manage his incontinence, keep him active, and provide respite for his family caregivers. Mohammed, who lives with his father and his mother, described their recent struggle to maintain the services his father still receives; daily visits from a care worker for bathing and dressing and visits to a day center a few days per week:

We got letters from the local authority a few years ago, talking about changes to care packages [through assessments]. Our care worker [for Farhaz] … told us we should ask for the submission from the assessor before it is finalized and submitted because sometimes they delete things [we have said to show levels of need]. I kept a table of the things [my father would] say and do [that showed the degree of his dementia].

My father has hallucinations ... We [his family] have to watch him all the time now. He ate half of a tub of barrier cream [diaper cream]. Eighty percent of the time he is very quiet, and 20 percent of the time he is very aggressive. He spends the whole day looking at his hands, folding tissues.

[The assessor] was late, and she fell asleep three times. You know it’s a problem when you’re being really nice [in spite of these things] because I

was fearful she would say no [to continuing the service] … I didn’t feel [the draft assessment] was representative of what was said.[17]

The assessor concluded the written assessment claiming that Mohammed’s father’s needs were “non-intense, non-complex, routine and predictable.”[18] Acting on the advice of the care worker and information from Age UK, an older person’s advocacy group, Mohammed asked for the draft assessment before it was finalized and requested a reassessment by another assessor.  His father is fortunate: the reassessment found a higher level of requirements for support, which qualified him for specialized services from the National Health Service (NHS) Continuing Healthcare.[19]

 “Peter”

“Peter,” 61, had a brain injury following a stroke in 2003, which required six months of hospitalization. Since that time, he has limited mobility, uses a mobility scooter, and experiences severe anxiety. After his hospitalization, he spent years in homeless shelters, and moved into his current accessible home in East London in 2012. An assessment of his support needs originally provided him 1.5 hours of assistance per week to clean his house. During a 2017 reassessment, Peter asked for an additional hour per week, including to change and wash the sheets on his bed. The social worker conducting the assessment told him that he would actually get less and linked it to financial concerns. According to Peter, the social worker said she wouldn’t dare ask for that and that an extra hour was more than her job was worth. Peter said the social worker told him his care would be reduced from 1.5 hours to one hour due to the cuts in the funding of social care and said ‘we [the local authority] have basically got to cut back on everything.’[20]

Peter wrote a letter to his local government in May 2017, complaining about this cut in his services, but he had not received a response by late January 2018 when he spoke to Human Rights Watch.

“Martha”

“Julie” told Human Rights Watch that her mother, “Martha,” 65, was in a bus accident in March 2018 in a town east of London. Following the accident, Martha was incontinent and had so much back pain that she could not walk. Julie said the doctors sent her mother home from the hospital’s accident and emergency department that same day. Martha returned to the hospital the next day where a social services staff member conducted a social care assessment. Julie explained:

She came to my house. She was in excruciating pain, she couldn’t walk. She was leaking [urine] on my settee; she was in absolute agony. [The next day,] we went back to the hospital ... Social services did her [social care] assessment. They said she was medically fit to go home, [but that] she just couldn’t walk. She lives in a first floor flat, up two flights of stairs. They said, ‘She can just stay at yours, you have a downstairs toilet.’ Right now, she is sleeping on my settee …[21]

At the time of the interview in May 2018, Julie had been calling her own local authority and Martha’s local authority for additional support for her mother, without progress. She said, “With our social services, with the council, they’re telling us, ‘No.’” [22]

Jenny Bullen

Jenny Bullen, 67, of West Lancashire, cared for her mother who lived in another town for 10 years. Her mother had dementia and had experienced paranoia and psychoses for all her adult life. She passed away in 2014, at 89. Bullen told us that she struggled to get her mother’s local government authority’s social services to assess her support needs during the final year of her life.

[Assessors] would come and sit with us for maybe half an hour. They would look at my mum who seemed very calm. She was very socialized. She was having language problems, but she would say, ‘Oh yes, oh yes.’ She actually couldn’t tell her story.[23]

Eventually, the police found Bullen’s mother one morning after she had wandered around her town all night. Bullen asked the local authority for supervision at night for her mother. The local authority refused, saying that the only way her mother could have supervision at night would be for her to move into an institution and sell her flat to pay for it, or to pay for 24-hour in-home support herself. This refusal led Bullen’s mother to eventually be placed in an institution.  Bullen explained:

The 24-hour care was beyond my mum’s means, mine and my sister’s means. So, we had to find residential care for her. We just couldn’t trust that she knew how to keep herself safe in this flat. With the people who were assessing, it was like, ‘Well, this is the pot of money we’ve got.’

I tried to appeal, but mum actually died before that appeal came into fruition [in 2014]. … The local authority came back to me to say that we could have some extra money, because [mum] should have had some extra care [as I had appealed]. It wasn’t the money we wanted, it was the care![24]

 

Suspension of Services During Appeals

Currently, individuals can appeal needs assessments to their local authority, to the national Local Government and Social Care Ombudsman, or they can take their case directly to court.

As described above, people with whom Human Rights Watch spoke who did file an appeal regarding their social care assessment lost services very soon after an assessment. This left them without services they depended on, pending the outcome of an appeal. This can result in declines in health and well-being.

Dominic Carter, a Senior Policy Officer with the UK Alzheimer’s Society told Human Rights Watch that getting assessments correct is critical, because many face challenges in making appeals. “Lots of people living with dementia are living alone. Making a formal appeal can be too much, and they deteriorate because the [new] package [of care] is not right. Declines can be quick.”[26]

The Care Act is silent on the suspensive effect of an appeal. Department of Health guidance from 2006 states that “Decisions need to be made on a case-by-case basis, but there should generally be a presumption in favour of freezing, unless there is a good reason against it (for example, if it puts a service user at risk).”[27]

In responses to Human Rights Watch’s inquiries, two local authorities stated that they have the discretion to maintain services pending appeals or issue services pending an appeal but did not make clear the criteria they use for such decisions or how often they do continue to provide services. The Dorset County Council reported that it will continue services “as the as long as the original care plan fulfils the council's statutory duties to meet the person's needs.”[28] The North Yorkshire County Council said that managers “have the authority to continue services (if already in receipt) whilst a complaint is awaiting outcome” and that “a service would be provided pending the outcome, if one was not already in place, and if appropriate, and available within available resources.”[29]

The Department of Health and Social Care is currently developing a process for streamlined appeals, to be introduced by April 2020, as provided for in the Care Act.[30] As part of the reforms, the government should consider allowing services to continue to maintain individuals’ health and wellbeing during appeals. 

 

Lack of External Oversight of Social Care Assessments

In its 2017-2018 complaints report, released in November 2018, the Local Government and Social Care Ombudsman stated that assessments remain one of the biggest areas of complaint, and noted “a shift from one-off mistakes to problems with whole systems and policies, or procedures being incorrectly applied.”[31]

Social care assessments have huge relevance for the wellbeing and rights of those being assessed, yet there is currently a lack of sufficient oversight and monitoring of assessments to ensure consistent accuracy and objectivity. Older people’s rights advocates, staff of one local government agency, and staff of the Local Government Association, told Human Rights Watch that they were unaware of any system by which central government audits needs assessments to ensure they are being administered reliably.

The National Audit Office states clearly that:

The Department of Health & Social Care is responsible for health and adult social care policy in England. Local authorities commission social care and a small minority also provide care services. Local authorities do not have direct accountability to government .... .[32]

Human Rights Watch sent letters to 11 local government authorities requesting information on monitoring of social care needs assessments. The three local governments (Dorset County Council, North Yorkshire County Council, and London Borough of Barking & Dagenham) that responded indicated processes for reviewing social care needs assessments are conducted within each council’s own structures, and they were not aware of any systematic independent monitoring or monitoring of assessments by the central government.[33]

At time of writing we have not received responses from other local government authorities. We also contacted the Department of Health and Social Care and the Ministry of Housing, Communities and Local Government in England, requesting information on monitoring of social care needs assessments. We did not receive responses from them at the time of writing.

Local authorities submit reports to England’s Department of Health and Social Care on some aspects of their social care provision annually, such as how many people are living in nursing facilities, in residential care, and receiving short-term and long-term social care at home, in the Adult Social Care Outcomes Framework. The Department of Health and Social Care does not audit this information, nor does it use the information to improve local government authorities’ delivery of social care. In its 2018-2019 guidance for local authority reporting, it states: “The Government does not seek to performance manage councils in relation to any of the measures set out in this framework. Instead, the Adult Social Care Outcomes Framework (ASCOF) will inform and support improvement led by the sector itself, underpinned by strengthened transparency and local accountability.”[34]

Data reported to the Department of Health and Social Care may not always be accurate. A staff member at a local authority working on social care administration described the pressures she faces in reporting her local authority’s statistics on social care provision to the Department of Health and Social Care. During data compilation for an annual report for 2017, her manager asked her to overstate the number of people who had received short-term services had subsequently been deemed “healthy” and did not require a continuation of services:

… You have to take into account that none of this is audited … What I’m shocked at is that there is no auditing of our [social care] numbers … We’ve had pressure to change the figures [we report on social care]. Because it’s not audited, there’s a lot of making things look nicer.[35]

 

International Legal Standards

The Right to Health and to Family and Private Life

The International Covenant on Economic, Social and Cultural Rights (ICESCR), ratified by the United Kingdom but not yet incorporated into domestic law, guarantees the right of everyone to the enjoyment of the highest attainable standard of physical and mental health conducive to living a life in dignity, including for older persons. 

Like the ICESCR, the European Convention on Human Rights, ratified by the UK and incorporated into domestic law through the Human Rights Act 1998, guarantee the right to private and family life. European Court of Human Rights jurisprudence has determined that private life covers “a person’s physical and psychological integrity,” “personal development,” and “personal autonomy,” and more specifically is “considered relevant to complaints about public funding to facilitate the mobility and quality of life of disabled applicants.”[36] The court has also interpreted this right to protect people from the “disruption of home or family life” causing “stress and distress,” including when lack of financial support or community-based services would force older persons with disabilities out of their homes.[37]

The United Nations Committee on Economic, Social and Cultural Rights, which monitors implementation of the ICESCR, has called on governments to “implement measures especially for low-income families who wish to keep elderly people at home. This assistance should also be provided for persons living alone or elderly couples wishing to remain at home.”[38]

The UK is a party to the Council of Europe’s original European Social Charter of 1961, which requires it to respect a range of social and economic rights, including the right of everyone to health, to social and medical assistance, and the right to benefit from social welfare services.[39]

The UK has not ratified the Council of Europe’s Revised European Social Charter, adopted in 1996. Article 23 of that Charter, titled “the right of elderly persons to social protection” obliges parties to undertake or encourage measures to enable older people to remain full members of society for as long as possible, requiring that they should have …” adequate resources enabling them to lead a decent life and play an active part in public, social and cultural life;”[40] and to choose their lifestyle freely and to lead independent lives in their familiar surroundings for as long as they wish and are able, by means of “the health care and the services necessitated by their state[.]”[41]

The Right to Live Independently in the Community

Older people have the right to live independently in the community and to community-based services under the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which the UK ratified in 2009. Support for living independently can include: “access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation.” The right to live independently and be included in the community should not depend on the level of support a person needs.[42]

Many older people in need of social care have disabilities, defined by the CRPD as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[43]

In its October 2017 review of the UK, the UN Committee on the Rights of Persons with Disabilities expressed concern about changes in “policies and measures that affect the ability to live independently in the community,” and that “responsibility for supporting independent living has been transferred to the devolved administrations and local authorities without providing appropriate and earmarked budget allocation.”[44]

 

Recommendations

To the UK Government

  • Ensure that older people have access to the services they need to realize their rights to live independently in their communities with their rights to health and private and family life protected.
  • Establish a mechanism to monitor and evaluate social care needs assessments and the staff who conduct them to ensure consistency and equality nationally.
  • Ratify the Council of Europe’s Revised European Social Charter.

To the UK Parliament

  • The Health and Social Care Committee and the Housing, Communities and Local Government Committee of the House of Commons should examine the impact of austerity measures on local authority social care provision under the Care Act 2014.

To the Ministry of Housing, Communities and Local Government

  • Review successful appeals against initial social care needs assessments and collect data about the reasons assessments were identified as problematic; data should consider the age, gender, ethnicity, location, and place of residence of those assessed as well as the types of shortcomings in initial assessments; use this information to make corrections and improvements in the system with a goal of ensuring provision of services to which people are entitled and reducing the number of times individuals must appeal in order to secure social care services.
  • Direct local authorities to establish and document clearly the specific reasons to justify services being safely reduced or eliminated pending an individual’s appeal of an initial social care assessment and in all cases to strongly consider continuation of services pending appeals.

To the Department of Health and Social Care

  • Include, in the reform of social care appeals processes planned for 2020, the suspensive effect of appeals.
  • Execute a plan for the long-term stability and sustainability of the social care system in England to ensure that the human rights of older people are fully respected.

To Local Governments

  • Ensure the accuracy of needs assessments, including when there are not enough resources locally to meet those needs.
  • Document clearly the specific reasons to justify services being safely reduced or eliminated pending an individual’s appeal of an initial social care assessment and in all cases to strongly consider continuation of services pending appeals.
  • Ensure that individuals are fully informed of their rights and available options to appeal social care assessment decisions and provide reasonable accommodations to individuals who may require assistance in the appeals process.

 

Acknowledgments

This report was researched and written by Bethany Brown, Older Persons’ Rights researcher in the Disability Rights Division of Human Rights Watch. Jane Buchanan, deputy director of the Disability Rights Division, Diederik Lohman, director of the Health and Human Rights Division, and Benjamin Ward, deputy director of the Europe and Central Asia Division edited the report. Clive Baldwin, senior legal advisor, provided legal review, and Babatunde Olugboji, deputy program director, provided program review for Human Rights Watch. Cara Schulte, associate, Health and Human Rights Division, provided production assistance and support. Print production was coordinated by Jose Martinez, senior coordinator; and Fitzroy Hepkins, production manager.

Human Rights Watch thanks individuals who shared their personal stories, as well as officials, service providers, and experts who agreed to be interviewed. We also thank all the organizations that supported this work by facilitating interviews, and providing invaluable insight, including Dennis Reed of Silver Voices, Kirsty Woodard of Ageing Without Children, Jane Caldwell and the team of Age UK East London, Sally Copley and the team of the Alzheimer’s Society, and Rajbinder Johal and the team of Independent Age.

Human Rights Watch would like to thank the Samuel Centre for Social Connectedness for its partnership throughout this research. Social connectedness is a guiding theme in Human Rights Watch’s work for older people’s human rights. We would like to thank Eloise O’Carroll, Social Connectedness Fellow at the Samuel Centre for Social Connectedness, for her research assistance. And, we offer our deepest thanks to Kim Samuel for her unwavering belief in the power of social connectedness.

 

 

 

[2] Ibid.

[3] Age UK, “New Analysis Shows Number of Older People with Unmet Care Needs Soars to Record High,” July 9, 2018, https://www.ageuk.org.uk/latest-press/articles/2018/july-2018/new-analys... (accessed December 14, 2018).  

[4] Ipsos MORI, “Unmet Need for Care Full Report,” July 2017, https://www.ipsos.com/sites/default/files/2017-07/unmet-need-for-care-full-report.pdf (accessed November 16, 2018).

[5] Age UK, “The Health and Care of Older People in England 2017,” February 2017, p. 29 https://www.ageuk.org.uk/documents/EN-GB/For-professionals/Research/The_Health_and_Care_of_Older_People_in_England_2016.pdf?dtrk=true (accessed June 28, 2018).

[6] Age UK, “New Analysis Shows Number of Older People with Unmet Care Needs Soars to Record High,” (calculating that delayed discharges from hospital due to social care not being in place costs the NHS £289,140,954 per year); and The Health Foundation, “Social Care Funding Options: How Much Will They Cost?”  May 2018 (finding that a failure to fund social care will create “additional costs for other public services, particularly the NHS.”).

[7] Association of Directors of Adult Social Services, “Budget Survey 2018,” p. 16 https://www.adass.org.uk/adass-budget-survey-2018 (accessed June 28, 2018).

[8] The Kings Fund, “The World’s Biggest Quango,” May 2018, https://www.kingsfund.org.uk/sites/default/files/2018-05/worlds_biggest_quango_ifg_may2017.pdf (accessed June 19, 2018), p. 77, referencing Care Quality Commission, “’Adult Social Care “Approaching Tipping Point,’ Warns Quality Regulator,” press release, October 13, 2018.

[9] The Kings Fund, “The World’s Biggest Quango,” p. 87, citing Care Quality Commission, “The State of Health Care and Adult Social Care in England: 2016/17: Summary,” 2017.

[10] The Kings Fund, “The World’s Biggest Quango,” p. 87, citing Nuffield Trust, “The Health Foundation and The King’s Fund (2017) The Autumn Budget: Joint statement on health and social care,” 2017. 

[11] Human Rights Watch interview with Joynul Hoque, outreach worker at day care center in London, January 22, 2018.

[12] Human Rights Watch Skype interview with Mary Redman, December 18, 2017.

[13] Ibid.

[14] Human Rights Watch interview with “Barbara,” London, January 18, 2018.

[15] Human Rights Watch telephone interview with Joy Watson, July 19, 2018.

[16] Ibid.

[17] Human Rights Watch interview with “Farhaz,” London, March 15, 2018.

[18] Decision Support Tool for Continuing Healthcare, received from “Farhaz” on May 7, 2018, on file with HRW.

[19] The National Health Service is England’s free-at-the-point-of-service health services for all, regardless of income. https://www.nhs.uk/using-the-nhs/about-the-nhs/principles-and-values/. Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. This is known as NHS continuing healthcare. https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/ (accessed December 19, 2018).

[20] Human Rights Watch interview with “Peter,” London, January 23, 2018.

[21] Human Rights Watch telephone interview with “Martha,” May 2, 2018.

[22] Ibid.

[23] Human Rights Watch telephone interview with Jenny Bullen, December 13, 2017.

[24] Ibid.

[26] Human Rights Watch telephone interview with Dominic Carter, Senior Policy Officer, UK Alzheimer’s Society, July 16, 2018.

[27] Department of Health, “Learning From Complaints Social Services Complaints Procedure for Adults,” 2006, para. 6.5, http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/assetRoot/04/13/77/86/04137786.pdf (accessed November 18, 2018).

[28] Letter from Michael Ford, Dorset County Council, to Human Rights Watch, October 29, 2019. Available at www.hrw.org.

[29] Letter from Christine Appleyard, North Yorkshire County Council, to Human Rights Watch, November 15, 2018. Available at www.hrw.org.

[30] House of Commons Library, “Briefing Paper, Social Care: Announcements delaying the introduction of funding reforms (including the cap) (England),” February 23, 2018, https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigrati... (accessed November 18, 2018).

[31] Local Government and Social Care Ombudsman, “Social care pressures reflected in Ombudsman’s annual review of complaints,” November 28, 2018,

https://www.lgo.org.uk/information-centre/news/2018/nov/social-care-pressures-reflected-in-ombudsman-s-annual-review-of-complaints (accessed November 30, 2018).

[32] National Audit Office, “Adult Social Care At A Glance,” July 2018, p. 6. https://www.nao.org.uk/wp-content/uploads/2018/07/Adult-social-care-at-a-glance.pdf (accessed November 30,2018).

[33] Letter from Michael Ford, Dorset County Council, to Human Rights Watch, October 29, 2019; Letter from Christine Appleyard, North Yorkshire County Council, to Human Rights Watch, November 15, 2018; Email from Stephan Leibrecht, London Borough of Barking & Dagenham, to Human Rights Watch, November 19, 2018. Available at www.hrw.org.

[34] Department of Health and Social Care, “The Adult Social Care Outcomes Framework 2018/19 Handbook of Definitions,” March 2018, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/687208/Final_ASCOF_handbook_of_definitions_2018-19_2.pdf (accessed November 16, 2018).

[35] Human Rights Watch telephone interview with “Elise,” January 9, 2018.

[36] European Court of Human Rights, McDonald v. The United Kingdom, judgment of 20 August 2014, paras. 46-47.

[37] European Court of Human Rights, Watts v. The United Kingdom, decision on the admissibility of application no. 53586/09, para. 97.

[38] UN Committee on Economic, Social and Cultural Rights, General Comment No. 6, The Economic, Social and Cultural Rights of Older Persons (1995), 8 December 1995, art. 10, para. 31.

[39] Council of Europe, European Social Charter, 18 October 1961, arts. 12, 13, and 14, https://rm.coe.int/168006b642.

[40] Council of Europe, European Social Charter (Revised), 3 March 1996, art. 23, https://rm.coe.int/168007cf93.

[41] Ibid.

[42] Convention on the Rights of Persons with Disabilities (CRPD), adopted 24 January 2007, G.A. res. A/RES/61/106, entered into force 3 May 2008, ratified by the United Kingdom of Great Britain and Northern Ireland on 8 June 2009, preamble.

[43] CRPD, art. 1.

[44] Concluding Observations on the initial report of the United Kingdom of Great Britain and Northern Ireland to the United Nations Committee on the Rights of Persons With Disabilities, October 3, 2017, para 44,  http://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d%2fPPRiCAqhKb7yhspCUnZhK1jU66fLQJyHIkqMIT3RDaLiqzhH8tVNxhro6S657eVNwuqlzu0xvsQUehREyYEQD%2bldQaLP31QDpRclCKZKktydtAkeqhq77NLo1.

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

Video

Video: Opioids Crackdown in the US Leaves Pain Patients Suffering

Federal and state government efforts to reduce prescription opioids are inadvertently harming chronic pain patients. Many patients are involuntarily cut off medications that improve their lives or say they are unable to find a doctor willing to care for them. 

(New York) – Federal and state government efforts to reduce prescription opioids are inadvertently harming chronic pain patients in the United States, Human Rights Watch said in a new report today. Many patients are involuntarily cut off medications that improve their lives or say they are unable to find a doctor willing to care for them.

In the last decade, hundreds of thousands of Americans died of drug overdoses. By some estimates, nearly half of these deaths have involved prescription opioids. To stem this crisis, government authorities have mounted aggressive attempts to reduce the use of these medicines. They have investigated physicians who prescribe them for no legitimate medical reason and increased monitoring of prescribing by physicians. Some state governments and Medicaid programs have imposed strict upward limits on the dosage physicians are allowed to prescribe.

Maria Higginbotham, 57, holding screws and bolts removed from her back in a recent surgery above x-rays of her body. Higginbotham, a chronic pain patient diagnosed with degenerative disc disorder and a number of other painful conditions, has had twelve operations to prevent the collapse of her spine.

© 2018 Will Miller for Human Rights Watch

The 99-page report, “Not Allowed to Be Compassionate: Chronic Pain, the Overdose Crisis, and Unintended Harms in the US” documents how some of these actions have had an unintended and harmful chilling effect, making doctors fear repercussions for prescribing even to patients with severe chronic pain who have a legitimate medical need for prescription opioids.

“There is no doubt the government has to take action to counter the overdose crisis,” said Laura Mills, a health researcher at Human Rights Watch. “But it should make sure that chronic pain patients don’t end up being collateral damage.”

The report documents the negative impact of government efforts to reduce opioid prescribing to chronic pain patients. Based on dozens of interviews with patients, medical professionals, pharmacists, public officials, and health experts, this report describes how policies intended to stem the rise in overdose deaths have also driven harmful cutbacks in opioid prescribing to people who need these medicines.

Many chronic pain patients who found relief through opioid medications are being forced off them, the report found. Their pain increases as a result, and they can no longer participate fully in work, family, or social life.

“The only time I leave my house anymore is to go to a doctor’s appointment,” said 57-year-old Maria Higginbotham from Washington State. Higginbotham, who had 12 back operations to stem the collapse of her spine, suffers from several conditions that cause severe pain. Although opioid medicines significantly reduced her pain, her doctor informed her in March 2017 that he would cut her prescription by 75 percent. Her pain has intensified so much that she can no longer do simple things like cook, go to the bathroom unassisted, or play with her grandchildren. She said that the ordeal “is not just a physical issue, it’s also an emotional [one]. Because you’re losing parts of your life.”

Many patients who had a history of being treated with high-dose opioids found it difficult to find any medical care at all: if their provider retired or moved or if their clinic was shut down, they were often abruptly terminated from care and struggled to find a new doctor. Some patients spoke of self-medicating with alcohol or other drugs, while others said they had contemplated suicide because of their unmanaged pain.

Medical professionals interviewed by Human Rights Watch said they faced intense pressure to reduce opioid prescribing, even in cases where they believed a patient was benefitting from and taking their medication appropriately. Because federal law is vague on what constitutes appropriate prescribing, providers said they had lowered patients’ doses without their consent and against their own clinical judgment.

The use of opioids for treating chronic pain is controversial, as evidence of their effectiveness is limited and often inconclusive. However, involuntarily reducing medicines for patients who benefit from them and take them appropriately is inconsistent with recommendations from the Centers for Disease Control (CDC). In a 2016 guideline, the CDC encouraged physicians to reduce a patient’s dose only when they consent to the change. However, the report documents a harmful disconnect between the CDC Guideline and the way it has been interpreted and used by government authorities, insurers, and physicians themselves. The result is that many providers described the CDC Guideline as a key factor driving them to involuntarily cut patients off of opioid medications, even though it does not recommend doing so. 

Physicians also identified state laws and insurance policies aimed at reducing opioid prescribing as reasons for cutting back compliant patients or avoiding chronic pain patients altogether.

Forty million Americans suffer from moderate to severe chronic pain every day. Because chronic pain is complex and individual, it can be difficult and costly to treat, meaning many chronic pain patients do not receive adequate medical care. In the 1990s and early 2000s, patient advocacy as well as aggressive and deceptive pharmaceutical marketing led to a staggering rise in the use of opioids to treat chronic pain. Because insurance companies often give limited coverage for cost-intensive alternative treatments like physical therapy, massage, and acupuncture, opioids became a go-to and affordable treatment option used by many physicians. Coverage for alternative treatment is still problematic, leaving many chronic patients without other options.

Federal and state policymakers should ensure that policies to address the overdose crisis take the needs of chronic pain patients into account, and promote safer prescribing practices based on individual needs rather than blunt cutbacks. The government should collect data on the potential unintended consequences of such policies for chronic pain patients – evidence that is sorely lacking at the moment. Chronic pain patients have a legitimate – and often debilitating – medical condition and have a right to medically appropriate pain treatment.

“Physicians need to be cautious when prescribing these medications,” said Mills. “But policies that foster fear rather than appropriate prescribing needlessly force patients like Higginbotham into unnecessary pain and a diminished quality of life.”

 

Posted: January 1, 1970, 12:00 am

Laura is a researcher with the Health and Human Rights Division at Human Rights Watch, where her current project focuses on human rights violations of chronic pain patients amidst the opioid overdose crisis in the US. Before joining Human Rights Watch, she worked as a correspondent for The Wall Street Journal and the Associated Press. She was based in Russia and Ukraine and wrote about the conflict in eastern Ukraine, business and corruption, and social issues, including the rights of LGBT people, drug users, and orphans in Russia. Laura graduated from Columbia University with a BA in Slavic Studies and history in 2012. She speaks Russian, and is proficient in Spanish and Italian.

Posted: January 1, 1970, 12:00 am

Federal and state government efforts to reduce prescription opioids are inadvertently harming chronic pain patients. Many patients are involuntarily cut off medications that improve their lives or say they are unable to find a doctor willing to care for them.

In the last decade, hundreds of thousands of Americans died of drug overdoses each year. By some estimates, nearly half of these deaths have involved prescription opioids. To stem this crisis, government authorities have mounted aggressive attempts to reduce the use of these medicines. They have investigated physicians who prescribe them for no legitimate medical reason and increased monitoring of prescribing by physicians. Some state governments and Medicaid programs have imposed strict upward limits on the dosage physicians are allowed to prescribe.

Posted: January 1, 1970, 12:00 am

The Trump administration and United States Congress have endangered public health by ending measures, including defunding a scientific study, that address the human and environmental risks of mountaintop removal, a form of surface coal mining prevalent in central Appalachia.

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

I’ll start with a sentiment I hear a lot when I say I work on older people’s rights: “Oh, nursing homes can be awful, but my dad’s in a good one.” I would hope that everyone living in a facility is living in a “good” one. But unfortunately, that just isn’t the case. And what is more, even in the ones people think are “good” ones, with chandeliers and carpeting, there are risks inherent in the segregation from the outside world, risks in the situation of control a facility has when a person wholly depends on it.

We cannot overstate the risks. This year, we documented the widespread inappropriate use of medicines to sedate older people with dementia living in nursing homes in the US, often without their consent, in our report “‘They Want Docile’: How Nursing Homes in the United States Overmedicate People with Dementia.” I and others documented older people living afraid, wanting to go home.

News reports have documented sexual assaults in nursing facilities in the US, that even when reported, which is rare, may not be believed. About half of the nursing homes in the US ask for a binding arbitration agreement upon admission, which means residents waive their right to sue in court if they have any complaints against the facility or staff.

We can all agree that those problems are outrageous. But the same invisibility to the outside world, the institutional isolation and control that allows those problems to fester is also a breeding ground for many more little indignities. It’s not being able to choose your own breakfast, as a woman in Chicago explained to me last winter. She doesn’t like sweet things, and that’s all her facility offers. It’s not being able to get up and get dressed when you want, as vividly captured in a September news report on nursing homes in Australia, with hidden cameras showing a woman awake in bed for hours, calling out in the dark, waiting.

Independent living,” according to the Committee on the Rights of Persons with Disabilities, “should be regarded as the freedom to choose and control, in line with the respect for inherent dignity and individual autonomy.” People should receive support to enable them in their own homes, where they can maintain their connections with their community, their family, their privacy and their usual way of life.

Fortunately, public policy to support independent living has been gaining momentum in the UK, and in the US, and other places, and older people should have access to that support. Living with the support we need is a critical aspect of protecting our rights as we age, and it’s one I will continue to fight for, together with members of the Ageing Equal Campaign and other partners.

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