Insufficient Home Services for Older People

(Moscow) – The Russian government is not providing adequate resources for home-based services for older people, denying some of them the ability to live independent and dignified lives, Human Rights Watch said today.

Despite legislative reform to enhance these services, their funding and delivery appear to be inadequate to meet the needs of older people in Russia. Insufficient services may leave older people with little choice but to live in a nursing home or other institutional setting, rather than guaranteeing their right to live where and with whom they choose within their community.

“There are significant gaps in the services the Russian government provides to older people at home,” said Jane Buchanan, deputy disability rights director at Human Rights Watch. “When older people in Russia don’t get the support they need, they risk having to decide between living in an institution or in undignified conditions at home. This is a decision no one should have to make.”

With its aging population growing, Russia has taken positive steps toward reforming services for older people. In 2013, Russia passed a law to ensure that older people have access to a broader range of home services. Services can include personal support assistance such as delivery of groceries, payment of bills, food preparation, personal hygiene, or medical services, emergency services, or mental health services.

The law, which entered into force in 2015, says that services should be tailored to an individual’s needs with the goal of enabling older people “to remain in a familiar and positive living environment.”

However, Human Rights Watch’s interviews with 20 older people in Pskov and Sverdlovsk regions, as well as with experts and advocates in various parts of Russia, suggest that despite reform efforts, services often do not go far enough to meet the needs of older people to allow them to live at home with dignity.

Under the law, financing and delivery of home-based services is the responsibility of regional governments. Experts and advocates said that funds were often insufficient to cover the real need for home services, rendering the 2013 law ineffective. Social workers, whose jobs include delivering home-based services to older people, often have heavy caseloads that do not allow them to provide comprehensive services, even if provided for by regional or federal norms. In most cases Human Rights Watch examined, social workers were unable to carry out services beyond delivery of food and medicine.

A 93-year-old woman in Sverdlovsk region, who broke her leg two years ago has pain that makes walking or bending it difficult, said that a social service worker visits her twice a week, primarily to deliver groceries and tidy her apartment. But the woman said that she cannot get into the bathtub without help, rarely eats cooked meals, and receives few visits other than from the social worker.

“I don’t leave my apartment,” she said, crying. “I would love to… Two winters I have not been able to go anywhere. I sit here like I am in prison.” Three social workers interviewed said that they each assisted 16 to 19 people a week. Because of that workload, they said, they were unable to spend more than an hour two or three times per week with a client, and typically could only provide the least time-consuming services such as delivering groceries, firewood, water, or taking out the garbage and paying bills.

Social workers said that if a person had higher support needs and required more assistance, such as with cooking, eating, or personal hygiene, they could only ask relatives for help, pay for services, or move to an institution.

The law also requires older people or their legal representative to request services, meaning that unless older people get adequate information about entitlements, they may not be able to get the support that is available.

According to Russian government statistics, Russia had 37.3 million people over the government pension age, 60 for women and 65 for men (approximately 25 percent of the population) as of January 2020, up from 20.4 percent increase in 2005. The percentage of older people is expected to continue growing in the coming years.

The Russian government spends significantly less for home-based support services than for institutional living costs: according to government statistics, average spending per person in a nursing home is 35,000 rubles (approximately US$472) a month and 34,095 rubles (US$460) in a psychoneurological institution (PNI), compared with an average of 5,889 rubles (US$79) for home-based services.

More than 278,000 people live in state-run residential institutions for older people and people with disabilities in Russia, but there is no publicly available government data on how many of them are older people. Journalists and advocates have reported extensively on the abuses in these institutions, including inappropriate use of psychotropic medication to control behavior, inadequate medical care, and denial of legal capacity.

The Russian government is collaborating with non-profit organizations to improve and expand the delivery of home-based services in pilot programs in 24 regions, with the goal of eventually expanding those reforms throughout the country. The federal government has allocated 1.8 billion rubles (US$24.8 million) from the federal budget for this and related initiatives each year from 2021 to 2023. Human Rights Watch did not assess the effectiveness of the pilot projects.

However, advocates said that the reform’s success in any given region still largely depends on the financial commitments and interest of regional governments, which means the availability of services varies across regions, sometimes significantly. They also said that longer-term federal funding and legislative reform were crucial to making reforms sustainable.

The Russian Constitution and national laws guarantee the right to health and social security to secure conditions for a dignified life. Russia also has obligations under international law to ensure the rights to an adequate standard of living and to physical and mental health. It should also protect the right of people with disabilities, including older people with disabilities, to live independently in the community with support.

The Russian government should ensure that all older people receive the support they need to live at home, if that is their choice, with dignity and autonomy. It should ensure that regional governments have sufficient funds to provide adequate support services on a long-term basis and improve and standardize training of social workers and other service providers where needed.

Federal and regional governments should improve and expand the types and availability of social services provided to older people and take measures necessary to ensure that sufficient numbers of social workers are available to provide support services for as much time as required. The government should also require service providers to do more outreach to older people to inform them about available services to ensure that those most in need of support can get them.

“Russia has taken important steps toward improving home-based support for older people, but there is a risk that those reforms will exist only on paper if they are not accompanied by better financing and more regulatory reform,” Buchanan said. “The Russian government should increase funding for reform efforts and ensure that older people can fully enjoy their right to live at home with dignity.”

Between December 2019 and March 2020, Human Rights Watch conducted in-person interviews with 20 people between the ages of 60 and 93 in Pskov and Sverdlovsk. Human Rights Watch also interviewed three social workers and two relatives of older people in those regions. Between December 2019 and July 2021, Human Rights Watch conducted both in-person and remote interviews with 14 experts, advocates for the rights of older people, including those directly involved in reforming long-term care, and journalists.

Human Rights Watch also reviewed laws, regulations, statistics, and policies that pertain to older people and home-based services at both the federal and regional level. Older people and their relatives are identified with pseudonyms to protect their privacy. The research did not include documenting conditions in residential institutions.

On July 19, Human Rights Watch sent questions to the Ministry of Labor and Social Protection of the Russian Federation, the Pskov Regional Committee for Social Protection, and the Sverdlovsk Regional Ministry of Social Policy.

In a July 29 letter to Human Rights Watch, the Pskov Regional Committee provided its official website address and said that any information not published on it is “for internal use only and is not public.” The letter provided no further information. The other agencies have not yet responded.

Institutional Settings for Older People

Russia’s changing demographics have prompted the government to reform its policies for long-term care. The changes include increasing the support and services available to older people, increasing the participation of nongovernmental organizations in delivering services to people at home, and increasing access to medical services for older people.

As of January 2020, 278,900 people lived in the country’s 1,249 state-run residential institutions. Of these, 78,500 people live in residential institutions for older people and people with disabilities, nursing homes, while 157,500 live in psychoneurological institutions (PNIs) for people with psychosocial, developmental, and intellectual disabilities, and a smaller number in small group homes or gerontological centers.

Maria Sisneva, director of the advocacy group Stop PNI, said that the government does not publish data on ages of people living in residential institutions. She estimates that the average number of older people in PNIs has increased in recent years, typically making up 30 to 50 percent of residents. Advocates and experts told Human Rights Watch that older people in PNIs are most frequently segregated in so-called “mercy wards,” highly restricted parts of the facility for people who are deemed to have higher physical or psychosocial support needs.

Experts say that there is also a growing number of private nursing homes. While some are registered, registration is not required, and those that remain unregistered have virtually no government or independent oversight. In 2020, some experts estimated the number of beds in unregistered private nursing homes to be as high as 30,000. Media outlets have reported on numerous fires and other deadly incidents in private, unregistered nursing homes.

Media reports and advocates say that residential institutions for older people and people with disabilities in Russia are rife with human rights abuses. Psychoneurological institutes widely employ chemical restraint, the use of medication, particularly psychotropic drugs, to control behavior without a therapeutic purpose, and physical restraints, for example tying a person to a bed or other furniture to restrain them. And they provide poor quality medical treatment and very little physical or cognitive rehabilitation of any kind.

These institutions often lack sufficient transparency to allow more effective monitoring to prevent abuse. Organizations including Human Rights Watch have documented that many PNI residents have been stripped of their legal capacity by a court, in many cases without being in the courtroom, as Russian and international law require. In many cases, the institution itself assumes legal guardianship, making it even harder for residents to report abuse.

Staff ratios are typically extremely low, with advocates and journalists citing an approximate ratio of one staff person to 20 to 30 residents, many of whom have high support needs.

Advocates who have visited institutions said that older people in these institutions were rarely dressed in anything but a hospital gown, and typically remained in their beds all day, including for meals.

“[Staff] at least organize concerts and dances for the younger people, but older people [in the PNIs] are simply living out their days,” Sisneva said. “They are not given anything to do.”

Advocates and experts say that the situation in nursing homes, where most older adults are not under guardianship, was typically not as dire as in PNIs, but a lack of transparency and low staffing ratios often led to human rights violations, including the inappropriate use of psychotropic drugs to control behavior, inadequate or inappropriate medical treatment, and lack of sufficient support and engagement.

The Covid-19 pandemic highlighted the lack of transparency: the government did not publish regular and timely information about nursing home infections and deaths despite widespread accounts by media outlets and advocates about the spread of the virus.

A Human Rights Watch investigation into Russian institutions for children with disabilities in 2014 found numerous rights violations, including physical and psychological violence, neglect, poor nutrition, lack of health care, and the use of physical and chemical restraints, among other abuses.

Gaps in Home Services for Older People

Many older people Human Rights Watch interviewed said they did not want to live in a nursing home or PNI and preferred to live in their own homes. Two had lived in a nursing home but had decided instead to live in the community. But interviews with older people, advocates, and experts indicated that in some places, government-subsidized support services are insufficient to support older people living in the community, particularly those without relatives or others able to provide support.

The government began an effort to reform support services with Federal Law 442 On the Foundations of Social Services for Citizens of the Russian Federation. The law, which entered into force in 2015, applies to those who have “fully or partially lost the ability or opportunity to care for themselves, to move about independently, or to provide for their basic needs due to illness, injury, age, or disability.” In contrast with previous regulations, the new law called for both home and institutional service providers to create an “individualized program” to support the needs of older people and people with disabilities.

Under the law, home-based services include, among other things, personal assistance, emergency assistance, socio-medical assistance, such as administering medication or assisting with injections, and socio-psychological support, such as counseling or other psychological services. While all these services can be crucial to independent living, Human Rights Watch focused on access to personal assistance, which according to Russian government statistics is the service that older people use most frequently.

The legal framework for determining eligibility is based on financial means, which can be problematic, Human Rights Watch found. Under the law, the government must cover the costs of services for those who fall below a certain financial eligibility threshold, which differs among regions. People with incomes above that threshold must partially or fully pay for services. Income is calculated on a household basis, meaning the income of any family members living with the older person is taken into consideration. Government guidance encourages service providers to prioritize providing free services to older people who live alone.

But determining eligibility for free services based on family income assumes that the older person will have access to an adequate share of that income, which may not be the case. It can also reinforce or create situations in which older people are dependent on family members financially and for assistance, rather than treating the older people as individual, autonomous rights holders. Instead, the government should determine eligibility for free services based on individual income, Human Rights Watch said.

Older people, social workers, and advocates said that older people often do not receive home-based services that allow them to live in the community comfortably and with dignity. They said that social workers most frequently provide only very basic services such as delivering groceries and medicine and, in rural areas, firewood and water, or help with paying bills. But if an older person requires more support, such as with hygiene, cooking, eating, or assistance leaving the house, the government often does not provide these services.

“Nikolai P.,” 70, who lives alone in an apartment in Pskov region, had his first stroke in the late 1990s. He has limited use of his legs and one arm and can stand for only brief periods while using his stronger arm to support himself with a cane. A social worker visits him briefly three times per week to deliver groceries and firewood. But since he is over the regional income threshold, he has to partially pay for services. He said he was unable to afford some services that he needs, such as for preparing meals.

“I almost never [eat a cooked meal],” he said.” Sometimes I boil some pelmeni [dumplings], but it’s difficult to stand. How can I simultaneously stir the pot and hold myself up with one leg? If I were a tightrope-walker maybe I would be able to balance on one leg like that.”

He pays the social worker 1,400 rubles (US$19) monthly to deliver groceries, dispose of garbage, and help pay bills. “I need more services,” he said. But if he paid more out of his monthly pension of 19,000 rubles (US$257), he said, after he pays for utilities, food, and other necessary goods, he would have difficulty buying medicine, on which he spends 5,000 rubles (US$67) per month. “[The social worker] just told me to pay, or nothing. They told me to hire somebody myself, because ‘These are our rates.’”

“Elizaveta N.,” 84, who lives in Sverdlovsk region and is now blind, remained active until her late 70s and had sufficient eyesight to confidently leave her apartment by herself until 2018. Her daughter and son live in Moscow. Her grandson lives in the same city as she does and has three young children and a business, leaving him little time to help her. Her social worker visits twice a week to deliver groceries and medication, and to take out the garbage. The social worker vacuums twice a month.

“I could do with some walks [outside]… She [the social worker] doesn’t have time. She has to look after 18 people, that’s nine people per day,” she said. Responding to a question about how her life had changed due to the lack of sufficient services to support her, she said, “I’m socializing less, there are fewer calls, I rarely go out.”

The social workers told Human Rights Watch that if an older person required a higher level of support, they often were forced to go to a nursing home if they did not have relatives who could or would support them.

A social worker in Pskov region described one client who had had a stroke:

“She had difficulty moving around and she could talk, but [with difficulty]. She lived in a free-standing house and would have had to be visited every day so they could heat the stove, bring firewood, and bring water. She couldn’t even walk… If she at least was walking it would have been possible [to live independently at home]. But if a person is bedridden, there is no other option [than a nursing home].… They don’t want to go [to a nursing home] but need forces them to.”

Regional Disparities in Financing, Standards

Experts and advocates said that a major problem for expanding home-based services is the fact that they are largely financed and regulated by regional governments. The federal government creates a model list of personal assistance services that must be provided, including delivery of groceries, firewood, and other goods, help preparing food, help paying bills, and cleaning services. But regional governments are then responsible for determining the final list, and the rates, frequency, and duration, as well as oversight, setting staff workload, and funding.

Russia has high levels of regional inequality compared with countries with similar economies, and home-based services therefore may differ widely from region to region due to budgetary discrepancies. Experts said that regions cut back on spending by limiting the frequency or amount of time a social worker is allowed to spend on providing services.

“The trick is that the standards for delivering social services are set by the regions,” said one expert familiar with the home-based service system. “The standards establish the quality and frequency of the services. For example, they may say, ‘At most two times per week.’ But this means that vital needs are not covered. Regions do this because they do not have enough money.”

Regional regulations outlining caps on services indicate that it would most likely be difficult for an older person with high personal support needs to remain in their home, particularly without significant additional private or family assistance. In St. Petersburg, for example, regulations recommend that social workers can change a person’s diapers and feed them only 156 times a year.

In Pskov region, clients in houses without running water can receive only seven liters of water a month. In Khabarovsk region, social workers can support people unable to eat on their own to eat meals only twice a week. In contrast, in Moscow, city authorities said that eligible older people have a right to up to five hours of personal assistance at home per day.

Social Workers’ Workload, Training Needs

According to Russia’s state statistics office, the number of social workers in the country decreased from 172,526 in 2013 to 135,983 in 2017. The average number of clients a social worker serves increased, from 6.5 a day in 2011 to 8.4 in 2017. Social workers interviewed said that as a result, they had only limited ability to take on extra tasks for clients with higher support needs. This undermines their capacity to deliver on the federal law’s requirements for an individualized approach to supporting older people.

“[The individual plans] are more or less all the same,” said a social worker in the Pskov region. “It’s groceries, payment [for utilities], and other things like bringing them newspapers or medicine. In theory, there are a lot of services, but I just [can’t] do some things. I say right away that I can’t cook for them, wash floors, or clean. If they want that, they have to hire somebody or ask a neighbor. When would we have time for this?”

A social worker in Sverdlovsk region said, “I mostly bring groceries. Sometimes I cook for them but it’s not like I can spend three hours cooking meat, I can just boil them some [frozen] dumplings or make some tea. People can be visited twice per week, five times per week if they want. But never for more than an hour.”

“Social workers [in Russia] do not deliver support services, they primarily deliver groceries,” said Irina Grigorieva, a professor of sociology who researches aging at St. Petersburg State University. While federal statistics were not available on the quantity of each type of service distributed, some regional government data indicates that grocery delivery takes up most of social workers’ time. In Moscow, for example, delivering groceries and other key goods made up 60 percent of services.

Experts also pointed to the lack of federal training standards for social workers, which, when compounded with the large number of people they are expected to assist, meant they are often ill-equipped to take on the more complex support services.

“In Russia there is no system for training social workers, more than half of the regions don’t have access to social services training,” said another expert involved in long-term care reform. “Social workers have very low motivation. They need to reach as many people as possible and so they take ‘easy’ [cases], rather than more ‘challenging’ ones.”

The social worker in Sverdlovsk region echoed this in her comments about working with people with intellectual disabilities such as dementia: “We don’t take those [people]. … They should hire a home aide, there are no state home aides, that’s not our job.”

Asked what could be done to improve quality of assistance for people at home, she said, “We need fewer clients so that the quality of support would be higher, and also less paperwork… If the ‘lying down’ clients [those who cannot walk] had home aides, and I only had 12 clients, that would be quite manageable.”

Some regions appear to have taken positive steps toward ensuring that social workers have more capacity to support the needs of older people. According to the Moscow city government, all grocery delivery and utility payments were outsourced to professional companies as of January 2020, which allowed social workers more time for other tasks. A June 2020 news release said that “a number of services, previously provided only for a fee can now be provided free of charge (apartment cleaning, changing bed linens, accompanying [an older person] for a walk, etc.).”

Regions participating in the pilot programs to improve and expand at-home services have also passed relevant legislative amendments to, for example, increase cooperation between healthcare and social protection systems, tailor social service programs to individual needs, and expand the types of home-based services available.

Lack of Information for Older People and Family Members

Human Rights Watch interviewed older people and family members who seemed unaware of the existence of state-provided home services or believed they were ineligible, particularly if they lived in more remote rural areas. They expressed little trust in the government to provide such services and were wary of involving social workers rather than family members or neighbors in helping them.

Federal Law 442 states that social services should be delivered on a “declarative” basis, meaning a person in need of support (or their representative) must reach out to the local provider to request services. Advocates and experts have lobbied for an alternative system in which social workers, medical professionals, or others would identify or seek out those in need of support and connect them with the relevant services.

A social work expert said that in some cases social workers do reach out proactively to find in need of these services. The expert said this was typically related to the need to fill government quotas rather than an effort to comprehensively assess need in a given area: “Each locality has a quota, or a set number of clients whom social workers should be supporting, and for most part [this number] does not change. When people die, they [social workers] go looking for people to fill the rolls.”

“Alexander” and “Svetlana” O., 83 and 82, respectively, worked on a collective farm in a remote village of Pskov region until their retirement. Due to work-related injuries and arthritis, both can only walk for brief periods with the help of a cane. Walking and standing are painful. Their great-grandson, who is in the 10th grade, brings them firewood and water. They have never requested government assistance. When asked why, Svetlana said, “Who [would we ask]? You can’t get it. Who wants to travel out to us? [Look at] the road.”

“Anastasia F.,” 60, in Pskov region, has diabetes which has left her unable to walk without a cane. In 2019, she lived on a pension of 8,806 rubles (US$120) per month, which was the minimum pension in Pskov at that time, making her eligible to receive free services. However, she said that she feared involving the state in her life because she is currently responsible for her 15- and 16-year-old nephews while their father, her brother, is in prison, and she did not want to risk having social services remove them from her care. “I’m afraid to complain anywhere,” she said.

Relatives of older people similarly expressed disbelief that the government would provide adequate support services, or simply did not know that such services existed.

For example, “Agafya L.,” 60, supports her 95-year-old stepfather, who is blind, full-time. When asked if she had considered reaching out to the government social services provider for help, she said, “Older people, myself included, don’t know where to reach out to for help… I have been caring for him for five years, and these are blacked-out… years of my life. I can’t sleep. I don’t have any days off.”

“Lydia P.,” 50, in Pskov region, supports her 80-year-old father, who has dementia, limited mobility, and needs help with personal hygiene and eating. She also cares for two adopted children, including one with a disability. When asked whether she would consider reaching out for state support for her father, she said, “From where? Nobody is interested. I know that because of my own experience with social workers [for the adopted children] … I understand perfectly well that if they won’t help a child, why would they help an older person?”

Older people and their relatives also expressed a fear of stigma associated with seeking services, expressing a perception that those who received help from the state were often those whose children or relatives did not care sufficiently about them to help. The social worker in Pskov region said, “Let’s say their son doesn’t help them, they are embarrassed. They don’t want to admit that they need help.”

“Polina Z.,” 80, in Pskov region, has severe asthma and is limited in her ability to take care of her home. When asked whom she would ask for help, she said, “I would reach out to my children, there’s nobody else.”

International and Russian Law

Older people with disabilities have the right to live independently in the community and to home and community-based support under the Convention on the Rights of People with Disabilities (CRPD), which Russia ratified in 2012. Support includes “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.” These supports should be available to anyone with a disability on an equal basis, meaning it should not depend on the level of support a person requires.

The Russian Federation is also a party to the International Covenant on Economic, Social and Cultural Rights, by which it has undertaken to realize the right of everyone to social security; an adequate standard of living, including adequate food, clothing, and housing; and the highest attainable standard of physical and mental health. To realize these rights, governments should determine the nature and scope of problems, adopt properly designed policies, and ensure the relevant budget support.

The Russian Constitution provides for the right to “social security guarantees,” “state support to older people and people with disabilities,” and the right to health and medical assistance.

Under Federal Law 442, social services should be “based on human rights and respect for individual dignity, humane, and not denigrate a person’s honor or dignity.” The law calls for services to be delivered without regard for sex, race, age, nationality, language, or place of residence. Services should be located near the users of the service; be sufficient to meet the needs of citizens; and have sufficient financial, technical, personnel, and other resources. The stated goal of the law is to allow for people “to remain in a familiar and positive living environment.”

Enabling people to live with dignity and as full members of society goes beyond meeting basic survival needs. While some regions are attempting to provide some support for older people’s access to social and public spaces and participation in the community, for example a companion when visiting theaters and organizing physical and cultural activities, these services are limited and not available across all regions.

To ensure that older people have access to support services that enable their participation in society on an equal basis with others, such services should be included on the federal government’s minimum list of services. Older people should be involved in the design of these services so they can determine what aspects of life and society they wish to participate in.

Federal Law 181 On Social Protection of People with Disabilities in Russia entitles people with disabilities who require assistance to medical and household services at home and in residential facilities. Under the law, social protection for people with disabilities is aimed at ensuring their equal participation in public life.

Source: Human Rights Watch

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