Summary
Currently, due to my age [56], I am not eligible for the Personal Assistants Program provided by the National Integrated Care System, which is regulated by the 2015 law. Instead, I have access to a smaller program of 20 hours per month for personal assistance. Due to my physical disability, I need support to get out of bed, take a shower, and eat my meals. A person comes three times a week for two hours to help me with some of these tasks. On other days of the week and during the weekend, my partner supports me. I prefer [the assistant to come for] morning shifts, although there is no option to choose the schedule that suits me best.
—Adriana Paciel, 56, lawyer with a physical disability, Montevideo, August 22, 2023
The 2015 law referenced by Adriana Paciel (Law No. 19353), created the National Integrated Care System (Sistema Nacional Integrado de Cuidados, SNIC), which provides personal assistance services for people with disabilities under 29 years old and people 80 and over via the Personal Assistants Program (Asistentes Personales).
Paciel, like thousands of other people in Uruguay with disabilities, depends primarily on her family members’ support in her personal and professional life, as state-provided personal assistance is insufficient for people with disabilities to fully live their lives and exercise all their rights. Many are outright excluded from coverage. Most people with disabilities who are between 29 and 79 years old (inclusive), like Paciel, are barred from accessing the Personal Assistants Program. While a few, like Adriana, qualify for the extremely small Partial Support Program (Apoyo Parcial), this program only applies in the departments of Canelones, Cerro Largo, Montevideo, Paysandú, Rivera, and Rocha; serves a limited number of people; and lacks flexibility.
Uruguay is a pioneer in Latin America for implementing a support system for people with disabilities and older people that is integrated into its national care system. However, its program includes multiple eligibility restrictions for adults with disabilities, greatly limiting its reach.
In addition to age restrictions that keep people between 29- and 79-years-old (inclusive) from accessing the personal assistance program, Uruguay’s care system also excludes people who live in institutions like Carlos Ignacio Sánchez, a 27-year-old with cerebral palsy, who has been institutionalized in a home for people with disabilities since childhood. The Personal Assistants Program would have allowed Sánchez a modicum of control over his life and daily activities; without it, he remains entirely dependent on the schedules set for him by the institution’s staff.
Those who can access the Personal Assistants Program receive a maximum of 80 hours of support per month from the Ministry of Social Development. This limited number of hours hinders their ability to perform their daily activities on an equal basis with others. Such is the case of Leonardo Fabián Fernández Sosa, a 37-year-old man with cerebral palsy who uses the program, but for whom the number of hours is insufficient to carry out daily activities. Like many others with disabilities who access personal assistance services under this scheme, Fernández has no choice but to limit and compress his activities into the time when the assistant is available. As a result, people like Fernández find it difficult to realize their right to independent living.
Furthermore, several people with certain disabilities—including sensory disabilities (blind and deaf people), Down syndrome and other intellectual disabilities—and developmental disabilities with high support requirements, described how the program was inadequately tailored to meet their needs, limiting its value to their ability to live independently.
Disability is an umbrella term encompassing various impairments, including physical, sensory, intellectual, and psychosocial ones. However, aspiring personal assistants in Uruguay have very basic training, which focuses on supporting people with physical activities, such as with hygiene or mobility. Personal assistants are not trained to support people with non-physical disabilities or with certain physical or other disabilities who have complex, high-support requirements, such as people with autism.
Human Rights Watch research indicates that there is little government oversight over the quality of service provided by personal assistants or accountability measures, including for poor quality of service, such as punctuality and performance, or potential conflicts in the contractual relationship between personal assistants and people with disabilities. The labor courts remain the only avenue for resolving labor conflicts with personal assistants, and the person requiring assistance must pay out of pocket for legal representation, despite their already difficult financial situations. Meanwhile, the government pays for legal representation for the personal assistant. This creates a risk of problems in service provision and even abuse by personal assistants.
One of the core aspects of implementing disability rights policies is enabling people with disabilities, through their representative organizations, to actively participate in designing, implementing, and monitoring public policies. However, despite the National Integrated Care System having a consultative body—the Advisory Committee—with disability representation, disability organizations, especially those focusing on diverse disabilities other than physical, do not directly participate in its activities and are not represented on the Advisory Committee. This makes it difficult for disability organizations to represent those with a broad range of disabilities and provide effective support for independent living.
Outside the National Integrated Care System and its Personal Assistants Program, Uruguay has robust social policies to support people with disabilities, including:
- A non-contributory disability pension program for those with high-support needs, which is compatible with employment (that is, people may receive this pension and work), unlike in some other Latin American countries.
- A contributory early disability retirement program for workers who acquire a disability that prevents them from continuing to work, which is not compatible with employment.
- A program that provides support for women with disabilities to raise children.
- A range of technical assistance services for people with disabilities, such as wheelchairs, hearing aids for the deaf or hard of hearing, and rehabilitation services.
- Small telecare programs for some older people.
- An accessible housing program, which includes modifications to make homes livable for people with physical disabilities and older people.
Under international human rights law, all people with disabilities have the right to support for independent living, enshrined in the Convention on the Rights of Persons with Disabilities (CRPD). Uruguay, as a state party to the CRPD, is obligated to progressively realize this right to the maximum of its available resources, including by developing a concrete plan of action around the convention, in addition to expanding its care system to meet the CRPD and other international and regional standards. The National Integrated Care System is groundbreaking in many ways, but aspects of the system and its implementation so far, particularly its age restrictions and insufficient at tailoring to individuals’ requirements, raising concerns from a human rights perspective.
To align its legislation, policies, and systems with international human rights law and standards on independent living for people with disabilities, Uruguay should harmonize legislation and policies to specifically refer to the right to independent living for adults as distinct from the concept of “care.” Likewise, to conform to the human rights-based model of disability, Uruguay should review the concept of “dependency” in its legal and policy frameworks.
The human rights model of disability focuses first and foremost on the inherent dignity of the human being; it only focuses on a person’s medical characteristics if necessary. It centers the individual in all decisions affecting them and, most importantly, locates the main “problem” in society, not in the person. The “problem” of disability under this model stems from a lack of responsiveness by the state and civil society to disability as a facet of human diversity. The state in particular has a responsibility to tackle socially created obstacles in order to promote respect for the dignity of all persons and ensure their full and equal rights.
Uruguay’s law defines “dependency” as “the state in which individuals require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life.” Legislation and bills regarding the so-called dependency of people with disabilities describe it as a condition characterized by the inability of the person to perform activities on their own and that requires the intervention of a third party to carry out daily living activities. The underlying idea of “dependency” is that some people with disabilities cannot carry out daily living activities on their own and thus are not autonomous, which is a misconception. As a result, the term can stigmatize people with disabilities and older people as a burden to society and their families.
Uruguay should review the age-based restrictions on its Personal Assistants Program, which risk leading to arbitrary results. Instead, Uruguay should work progressively to the maximum of its available resources toward making its programs of support for independent living, including the provision of personal assistants, universal on the basis of a person’s needs to thrive in their communities. Such needs include what they require to study, work, and participate in recreational activities, among others. Uruguay should have a concrete plan to achieve this objective. If universal support is not possible in the short term due to resource constraints, Uruguay should ensure that the eligibility criteria it uses is objective, reasonable, transparent, and avoids the stigmatization of beneficiaries.
Methodology
Globally, there is a significant movement to include the right to care and support for various populations, including children, people with disabilities, and older people as a cornerstone of social policy. In Latin America, this movement is quickly gaining ground in several countries, such as Argentina, Brazil, Colombia, Ecuador, Mexico, Panama, Peru, and Uruguay. Because Uruguay was the first country to implement a national care system in the region, Human Rights Watch decided to conduct research on how Uruguay developed its care policy.
The general discourse around the right to care and support does not adequately address all the necessary components for a care and support policy that is fully consistent with international human rights law. This research seeks to better understand and unpack the elements necessary for a robust policy of care and support. Our findings and recommendations can serve as guidance for countries currently developing national care policies to create ones fully aligned with international human rights law, and for those with existing national care policies, like Uruguay, to make theirs even stronger.
Human Rights Watch conducted the research for this report in August 2023 in Montevideo and Salto departments in Uruguay. We interviewed 60 people, including 30 with various forms of disabilities, including people with physical disabilities, blind people, deaf people, people with intellectual disabilities, including autism, and people with psychosocial disabilities. Of the people with disabilities interviewed, 25 did not have access to personal assistance services: 19 of whom were ineligible for the Personal Assistants Program because they fell outside the eligible age range; the program did not meet the personal requirements of the other 6.
Some of the people with disabilities interviewed have access to other government programs for people with disabilities, such as the disability pension, disability retirement pension, and personal assistants through the Partial Support Program.
Our connections with people with disabilities were facilitated by human rights activists, specialists, and referrals by interviewees themselves.
We also interviewed people who worked as personal assistants, including the leader of the union of personal assistants in Uruguay and members of a cooperative of personal assistants operating in Salto.
Human Rights Watch also interviewed public officials, representatives of UN Women, gender experts, national and international disability rights experts and specialists, and representatives of civil society organizations, including organizations of people with disabilities and human rights organizations. We also interviewed employees of organizations that provide services to people with disabilities.
Human Rights Watch supplemented interviews by reviewing government documents, including laws relating to social protection, people with disabilities and care, as well as relevant reports and resolutions of United Nations treaty bodies, the Organization of American States (OAS), regional human rights bodies, like the Inter-American Commission on Human Rights, and non-governmental organizations.
This report specifically focuses on how support for independent living is being managed for people with disabilities at the national level, hence our selection of Montevideo and Salto departments. Montevideo department is home to Uruguay’s capital city and is where most of the Personal Assistants Program operates. Salto department is home to the first cooperative of personal assistants under the Personal Assistants Program.
Human Rights Watch conducted interviews in Spanish. For deaf interviewees, we used Uruguayan sign language interpreters: we used a professional interpreter during an interview with a leader in the deaf community and informal interpreters (that is, friends or relatives of interviewees) to assist during interviews with other deaf individuals.
Government agencies are not authorized to disclose the names of individuals to whom they provide personal assistants. As a result, we relied on private referrals to identify those using this service, which limited our ability to find relevant people and the overall number of accounts we received. A significant number of interviewees were not part of the program, primarily due to its age restrictions: only individuals under 29 or 80 and over can access the Personal Assistants Program.
Human Rights Watch used pseudonyms or withheld full names to protect the privacy of some interviewees. Before each interview, we explained the purpose of our research and sought each interviewee’s consent, which they verbally provided. We informed all interviewees of their right to end the interview at any point or decline to answer any question without repercussions.
For accessibility purposes, some interviews were conducted in groups, especially those with people with intellectual disabilities. While most interviews were conducted in person, a few were completed remotely using video conferencing platforms, like Microsoft Teams or Zoom.
Human Rights Watch sent letters to government agencies regarding the concerns detailed in this report, including the Ministry of Social Development (National Institute for Women and the National Secretariat on Care and Disabilities), the Social Security Bank, and the National Institute of Employment and Vocational Training. A list of agencies to which Human Rights Watch wrote letters can be found in the annex to the online version of this report. The Ministry for Social Development, through the National Secretariat on Care and Disabilities was the only agency that responded. The response is published in full in in the annex and reflected in various parts of this report.
Background
Uruguay adopted an innovative care law (Law No. 19353) on November 27, 2015, creating the National Integrated Care System (Sistema Nacional Integrado de Cuidados, SNIC), which includes sections related to personal assistance services for people with disabilities and older people.[1] The original bill did not recognize the concept of a personal assistant, which was later added when the bill was signed into law in 2015. The concept had previously been recognized in another bill, the Personal Assistance project, drafted by leaders of the disability rights movement, which never became law.[2]
According to Law No. 19353, the care system is the set of actions that society undertakes to ensure the comprehensive development and well-being of those in a “situation of dependency.”[3] This law lists three categories of people who have the right to receive care: children up to age of 12, people 65 years old and over, and people with disabilities under 29 who are in a “situation of dependency.”[4] While the law establishes that people over age 65 can access the benefit, the National Care Board is implementing it progressively, and is thus prioritizing people 80 and over.[5]
Dependency is defined as “the state in which individuals require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life.”[6] Officials from the National Integrated Care System, established by the care legislation as an institutional structure with a specific budget program enabling the design of care plans for all populations covered by the care system, clarified to Human Rights Watch that disability does not always equate to dependency.[7] Thus, a person with a disability is not necessarily in a situation of dependency. Whether someone is eligible for personal assistant services depends on an assessment of that person’s level of dependency, which officials determine using the National Integrated Care System’s Dependency Scale.[8]
Dependency is an overarching concept used by Uruguay’s legislation to describe children under 12 and people with disabilities and older persons who require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life as described above.[9] Dependency is a problematic concept when used to refer to people with disabilities or older people, as it implies that their condition is a purely individual deficiency that can be determined and measured objectively, disregarding the social environment in which the person develops. It also fails to frame their requirements for exercising their rights in a positive way. A narrative based on dependency projects a negative image of persons with disabilities and older persons, portraying them as a burden.
The care legislation also established the National Care Board (Junta Nacional de Cuidados, JNC), which operates under the authority of the Ministry of Social Development and is responsible for coordinating the entire care system.[10] The JNC has an Advisory Committee composed of unions, academia, and civil society actors, including some representatives of organizations of people with disabilities, who provide non-binding advice on the general operation of the National Integrated Care System.[11] The committee meets periodically to advise the National Secretariat on better practices to achieve the care system goals.[12]
Personal Assistants Program
The Ministry of Social Development administers the Personal Assistants Program, which is deployed across the country and available to certain categories of people with disabilities. The Social Security Bank manages the funds designated by the National Integrated Care System for personal assistants, which covers the assistant’s fees, including obligations related to social security, termination before three months, and retirement. However, the individual requiring assistance must cover any severance pay if they dismiss the assistant after three months of service.[13]
Data from the 2011 national census indicates that of the 3,251,654 people in Uruguay, 517,771—that is, 16 percent of the total population—have a disability.[14]
However, not everyone with disabilities has the right to a personal assistant. This is only available to those who are considered to have “severe” disabilities and a “high level of dependency”; who do not reside in an institution; who qualify based on means testing; who are under 29 years old or are 80 or over; and those whose income is below a certain threshold.
In a report on its first five years (2015-2020), Uruguay’s National Care System provided its rationales for the age cut-offs, noting that these were established based on a general policy of progressivity in access to social protection programs. With regard to people under 29, the report stated that the care system prioritized this age group because childhood is a crucial time for the development of various abilities, and it is important to have appropriate programs to shape the development of children and youth and promote their participation in other spaces, including work. With regard to older people, the report stated that there was an initial proposal to begin with people 85 and over, which in 2017 was amended to allow people to apply for support upon turning 80. The report said that this was appropriate due to the “marked increase in severe dependency starting at age 80 and the high incidence of severe dependency starting at age 85,” a rate of 30 percent. The report noted that it is harder to ensure people at these older ages receive needed care due to a reduction in support networks and also that a large share of older people live with other older people, who might also be in a process of “fragility.”[15]
The National Secretary of Care and Disability told Human Rights Watch that age restrictions in law and administrative directives were budgetary.[16] In their written response to the main findings of this report, the National Secretary of Care said “they were currently working on determining a sustainability analysis of the programs and the possibility of expanding them”, which would be the way forward.[17]
The primary role of the personal assistant is to offer support and care, which does not include decision-making. The Personal Assistants Program emphasizes that personal assistants do not replace other professionals, such as educators or rehabilitation specialists.[18] The personal assistant visits the individual’s home at a mutually agreed upon time, and they only deal with the person requiring assistance, not family members, and are not expected to undertake domestic chores.[19]
Number of Beneficiaries
According to official information from the National Integrated Care System, by December 2023, there were a total of 6,048 active personal assistance services, with 1,462 new services registered in 2023.[20] The population using the program is composed of men and women in similar proportions. In December 2023, it included 3,141 men and 2,907 women.[21]
Personal Assistant Profile
Personal assistants must be at least 18 years old and have completed elementary school education and a 152-hour basic dependency care course offered by the National Institute of Employment and Vocational Training (INEFOP).[22]
Cost of a Personal Assistant
Eligible people with disabilities receive a subsidy to hire a certified personal assistant for up to 80 hours per month to support them in areas such as personal hygiene, cleanliness, dressing, eating nutritiously, studying, and participating in leisure activities.[23]
The size of the subsidy depends on an assessment of the severity of the disability and the level of “dependency” as well as income, which would include contributions of family members, as defined by the Civil Code of Uruguay.[24] The subsidy can be 33, 67, or 100 percent of the cost of the personal assistant. As of January 2024, the full cost for 80 hours of assistance was 28,414.20 Uruguayan pesos (US$ 708.89) per month, including both salary and benefits.[25]
For adults requiring service, the subsidy’s linkage to their family’s income is problematic. This policy results in people 18 and over being economically dependent on their family members, which can lead to situations of abuse and even violence.[26] The income used to determine eligibility for the Personal Assistants Program should be solely that of the adult requiring the service, regardless of their family’s income.
The Personal Assistants Program aims to provide a social safety net for personal assistants, and the state (via the Social Security Bank) directly provides their salary and benefits, like social security and retirement benefits.[27]
Provision of Personal Assistance
The Uruguayan government provides personal assistants to eligible people with disabilities in two ways. The first involves hiring a government-paid personal assistant who receives direction on the nature of the assistance from the individual in need or their family. Current legislation does not clearly detail how individuals with intellectual or learning disabilities are supported to direct their own support through a personal assistant. The other way is through cooperatives, which are organizations created to fulfill a social purpose.[28] This second method has not been fully implemented and currently exists only as a pilot program that started in 2021 in certain departments of Uruguay, including Salto and Tacuarembó.[29]
Other Support-Related Programs
In addition to the Personal Assistants Program, there are other programs that benefit people with disabilities, that are not part of the care program, including disability pension programs, the Partial Support Program, and support for the rehabilitation of children and adolescents with disabilities, housing, and women with disabilities to raise children. There is also a telecare program for older people.
Disability Pension Programs
The Social Security Bank implements some of Uruguay’s policies through social security mechanisms that protect people with disabilities. Disability pensions, contributory or non-contributory, are one way that the Social Security Bank provides benefits.[30]
The government provides a non-contributory disability pension for people with a “severe disability,” which is determined using a specific scale for assessment.[31] This pension is compatible with employment and recipients are allowed to claim it while in paid employment up to a certain monthly salary limit.[32] People with disabilities can receive this pension from childhood, and it is lifelong for those with permanent disabilities.[33]
In addition, Uruguay offers a contributory pension in the form of the early disability retirement program. This option allows individuals who can no longer work due to a disability to retire early on disability grounds. This pension is incompatible with employment as it centers on the recipient becoming unable to work.[34] Uruguayan law also has a provision for early retirement (and a contributory pension) at the age of 45 for individuals whose aging process is accelerated due to their disability, such as people with Down syndrome.[35]
Partial Support Program
The Ministry of Social Development has a program that began before the implementation of the care legislation called the Partial Support Program (Apoyo Parcial).[36] The program lacks flexibility as each personal assistant serves three individuals, making it challenging to adjust timings to cater to each recipient’s preferences.[37] Furthermore, it exists only in 6 of Uruguay’s 19 departments: Canelones, Cerro Largo, Montevideo, Paysandú, Rivera, and Rocha.[38]
Support and Services for Rehabilitation of Children and Adolescents with Disabilities
The Social Security Bank provides a range of extraordinary aids and services to support the rehabilitation of children and adolescents. These benefits include hydrotherapy and financial assistance for purchasing technical aids, such as wheelchairs, belts, and hearing devices for individuals with impairments, if they are prescribed by a doctor. [39]
Housing Support Program
The Social Security Bank offers a housing support program, which includes the construction of accessible housing designed for individuals with physical disabilities. It also provides a rental subsidy and financial support for older people who live in long-stay residences. However, it does not offer financing for long-stay residences specifically for people with disabilities.[40]
Support for Women with Disabilities to Raise Children
The Support for Women with Disabilities to Raise Children Program (Apoyo a la Crianza a Mujeres con Discapacidad), launched in 2021 under the purview of the Secretariat for Care and Disability of the Ministry of Social Development, aims to support women with disabilities who are pregnant or have children under the age of 6 in their care. Accordingly, it identifies and provides the support that a woman requires to exercise her right to raise children. The program includes the development of personalized parenting support plans and home visits to support the woman with disabilities and offers certain material benefits such as cribs and bottles, among others. As of January 2024, this program only covered the departments of Canelones, Montevideo, and San José.[41]
The program, which only covers women with disabilities, is problematic because it excludes men with disabilities who may be providing care for their children and should thus have access to these same services. Uruguay’s provision of assistance only to women perpetuates gender stereotypes and risks furthering the pattern of women doing the bulk of unpaid childcare work.
Telecare Program
Finally, there is a nascent telecare program for older people, which currently serves a limited number of beneficiaries. At time of writing, the specific eligibility criteria were unclear.[42] Telecare is a service through which a person calls previously authorized companies to receive recommendations regarding personal care. It can be a quick health consultation, including for mental health, or it can address emergency situations in which older people may find themselves.[43] To use the program, the beneficiary needs access to newer digital devices.[44]
Challenges Regarding Personal Assistant Services
Several times, I’ve tried to compete for a public position as a lawyer. Once, I was very close to getting hired, which ultimately did not happen. But [if I did get the position], not having access to a personal assistant who could come early [in the morning] would have been challenging.
—Adriana Andrea Paciel Navarro, Montevideo, August 22, 2023
People with disabilities in Uruguay face several challenges in accessing government-funded personal assistant services, which have age- and residence-based restrictions, provide only a limited number of hours of support, cover only limited types of daily activities, inadequately support people with disabilities with caregiving responsibilities, and cannot meet high-support needs due to inadequate training.
Age- and Residence-Based Restrictions to Access with Inadequate Alternatives
Twenty-five people with disabilities Human Rights Watch interviewed were not eligible to benefit from the Personal Assistants Program due to age-based or location-based requirements.
Only people under 29 years old or 80 or over are eligible. Care system officials told Human Rights Watch that age limits were set for strictly budgetary reasons. They also said there are no current plans to expand age-based eligibility because the system is currently focusing on addressing other issues, including updating the basic dependency care course that all aspiring personal assistants must complete, as many individuals providing personal assistance services had not completed the course.[45] Additionally, because of the Covid-19 pandemic, during 2020-2023, home evaluation visits of people with disabilities to determine their eligibility for personal assistants were halted and the course was not delivered.[46]
Human Rights Watch spoke to two people with disabilities who did not qualify for the Personal Assistants Program due to their age but were able to access the smaller Partial Support Program.
If the beneficiary of the Partial Support Program needs to change their schedule, they must seek authorization from the Ministry of Social Development.[47] While exceptions may be granted for medical appointments or other events, such as a job meeting or recreational opportunities, advance notice is necessary for any schedule change.[48] In one interviewee’s experience, it is easier to adhere to the predetermined schedule, so she made fewer and fewer scheduling adjustments due to the general constraints of the service.[49] Furthermore, the personal assistants operating under this program do not work on weekends or holidays.[50] Thus, if a beneficiary’s designated personal assistance day falls on a holiday, they would not receive service that day. Beneficiaries cannot choose when they would receive assistance, as they must follow a schedule established by the ministry the week before the service.[51]
Adriana Andrea Paciel Navarro, a 56-year-old lawyer with a physical disability, has lived with her partner Gerardo for 14 years. Due to her age, she does not qualify for the care system’s Personal Assistants Program, but she was able to access the Partial Support Program.[52]
Under the Partial Support Program, a personal assistant provides support for her at home three times a week, assisting with daily activities such as hygiene, getting out of bed, and dressing. The assistant typically arrives any time from 10 a.m. to 12 p.m., even though Paciel prefers to receive assistance in the morning, so she does not miss any professional activities later in the day. However, because government jobs generally start at 9 a.m. and Paciel cannot guarantee she can start working until 12 p.m. given her personal assistant’s schedule, she has been unable to access government jobs, despite applying several times.[53]
Isabel Santos, a 55-year-old woman with a physical disability, also does not qualify for the Personal Assistants Program because of her age. For some time, she had accessed the Partial Support Program.[54] Like others we interviewed, Isabel described the personal assistants’ lack of consistency, including their arrival time. While the Ministry of Social Development dispatched the same assistant some of the time, they sent different individuals to cover different shifts at other times.[55]
This inconsistency meant that Isabel frequently had to re-explain the detailed tasks the assistant needed to undertake. She shared her frustrations:
Having to explain and provide instructions to the different people [the ministry] sent to support me was overwhelming. Some assistants thought that the reusable catheters that I use were disposable, so in several instances, I found them in the trash because they had been discarded by the assistant.[56]
The Personal Assistants Program’s reach is further constrained by the requirement that care can only be administered in private homes, not in institutions. Some people with disabilities in Uruguay live in institutions because Uruguay does not have any programs to support young people with disabilities who do not have suitable family nor other social support networks.[57] Carlos Ignacio Sánchez, 27, is one such person and has resided in an institution for individuals with disabilities since 2010. Although he meets the age criteria, he is ineligible for the Personal Assistants Program because he lives in an institution. He told Human Rights Watch that he wanted the support of a personal assistant for his secondary education:
I don’t get along with my mother. I barely knew her, so when I was a kid, I entered this place [the institution] and I studied [in an] elementary school. I then wanted to go to high school, but this institution is understaffed, so they could not support me or take me to school. This is why I’d like to get a personal assistant, but [the government] told me that it was for people who did not live in institutions.[58]
Sánchez also hopes to find employment outside the institution. Currently, he can only leave the institution to go to a center providing services for people with disabilities, which he does a few mornings every week. He remains confined to the institution at all other times, including weekends.[59]
Limited Hours of Government-Funded Assistance
Interviewees with disabilities using the Personal Assistants Program told Human Rights Watch that while government-funded personal assistant services were extremely valuable, the government has not been paying for enough hours of support.
Vanessa Barbosa, a 35-year-old woman with cerebral palsy since birth and the mother of a 5-year-old daughter, said the 80 hours per month of personal assistant services provided by the Social Security Bank are insufficient. Vanessa requires extensive support for daily activities, including personal hygiene, feeding, and caring for her daughter. [60] Because of the insufficient government-funded hours, she has had to hire personal assistants—at her own expense—to assist with tasks such as getting out of bed and cleaning during weekends. This means that she has been diverting resources from other essentials such as buying clothes or engaging in recreational activities.[61] Barbosa and her mother, with whom she lives, depend on government benefits for people with permanent disabilities and for her daughter’s care.[62]
Leonardo Fabián Fernández Sosa, a 37-year-old man with cerebral palsy, also said the allocated hours were insufficient to manage all his daily activities, often forcing him to prioritize certain ones.[63] He was compelled to choose between having a personal assistant in the morning to help him get out of bed or in the afternoon to support him at school. “I use my personal assistant to go to school in the afternoon, to help me take notes, and to go to the bathroom,” he said. “In the morning, my parents help me with personal care, and on weekends, I have no personal assistance, so I stay at home.” Staying home during weekends has forced him to curtail his social interactions and physical rehabilitation, among other activities. Occasionally, he arranges with his personal assistant for extra hours, incurring additional costs that he cannot regularly afford.[64]
Fernández Sosa also highlighted the challenges faced by individuals with disabilities in securing employment. His sole income is a permanent disability pension, which he has received since childhood, of about 15,000 Uruguayan pesos ($385 per month).[65]
Oscar de los Andes (pseudonym), a 43-year-old man with a lifelong physical disability, described how the personal assistant service is indispensable for him, especially for his personal hygiene and occasional outings. Oscar relies on a state-provided disability pension because of the difficulties he faces in going to school or finding employment, a problem shared by other people with physical disabilities.[66]
Unlike some of his peers, de los Andes transitioned from the Partial Support Program to the care system for support. Because he lives with his parents, who can provide some assistance, he can manage within the state-allotted 80 hours per month of personal assistance. While he possesses considerable discretion in adjusting his personal assistant’s schedule, the 80 hours leave little to no time for leisurely outings or other outdoor activities because of how long his essential hygiene tasks take. On weekends, his mother helps him with sponge baths. However, his mother struggles to fully meet his support needs. At times, de los Andes has also sought the assistance of his neighbors. When his personal assistant is unavailable for long periods of time—like during their annual 20-day leave, during which the program does not provide a replacement—it has been particularly challenging. “I too wish to enjoy the summer, but it’s not feasible due to my personal assistant’s vacation,” Oscar lamented. Echoing the sentiments of others who use personal assistant services, Oscar felt the hours provided by the care system fall short of addressing all his needs.[67]
Coverage for Only Limited Types of Activities
Under international human rights law, all people with disabilities have the right to independent living and to be included in the community regardless of the type of their disability or the intensity of their support needs.[68] Disability is an umbrella concept that includes people with different types of physical, sensory, intellectual, or psychosocial impairments that can lead to exclusion when interacting with social, cultural, and attitudinal barriers.[69]
Human Rights Watch’s research in Uruguay indicates that personal assistants did not have the necessary training or tools to provide diverse types of support to meet users’ specific requirements.
The Convention on the Rights of Persons with Disabilities (CRPD) establishes a variety of support mechanisms to actualize the rights to participation and independent living for people with disabilities.[70] The CRPD encompasses all types of disabilities, regardless of the intensity of their support needs, including those individuals with high requirements. It recognizes the diversity of disabilities and the resulting diversity of support needed.[71] Thus, personal assistants should be equipped to provide a wide spectrum of support, beyond activities related to physical mobility or basic hygiene tasks, so all people with disabilities can enjoy their rights.
The current training for individuals working in personal assistance in Uruguay does not cover the wide variety of supports required to serve people with various disabilities. Some of these supports may be basic, but others demand different types of community interventions.[72]
To become a personal assistant one must have completed elementary education and taken a 152-hour basic dependency care course, although this focuses on support for older people and not people with disabilities.[73] There is little involvement of organizations for people with disabilities in providing course content, such as the philosophical underpinnings of the right to independent living and the need to respect the will and preferences of individuals regarding the support they receive.[74]
The course is also not tailored to support the independent living of people with intellectual disabilities, including through supported decision-making.[75] Interviewees with disabilities described the hardships they faced due to the limited types of activities covered by personal assistant services.
José Manuel Ceijas, a 27-year-old man with autism, told Human Rights Watch that he had to leave university after his first semester because crowded classrooms were very difficult environments for him. He said he would require more specific, individualized educational support to manage his educational tasks effectively if he returned to university, including receiving additional explanations for certain course topics.[76]
Human Rights Watch met with nine young people with Down syndrome and other intellectual disabilities. None of them used the Personal Assistants Program because the activities and support it provided did not meet their needs. The CRPD protects the right of people with disabilities to live independently and be included in the community "with choices equal to others," and to ensure the full enjoyment of this right, states should provide support services, including personal assistance.[77] But the Personal Assistant Program should be tailored to the specific barriers and challenges the individual with disabilities faces, to meaningfully ensure fulfillment of the right to live independently. For example, individuals with intellectual disabilities should have access to personal assistance that allows them to process information more easily and that could include support for decision-making, depending on the individual’s will and preference.[78] However, this aspect of support has not been developed in Uruguay.[79]
Mateo (full name withheld), a 27-year-old with Down syndrome who works at a law firm, noted his specific support needs for making cash transactions. “Using my debit card is straightforward for me, but handling cash payments and understanding change is very complicated,” he explained. “I would benefit from assistance with these types of activities.” However, the care system’s Personal Assistants Program does not cover this.[80]
The Uruguayan Down Syndrome Association, composed of relatives of individuals with Down syndrome, said that because of the challenge of independent living for people with this type of disability, they typically live with their families. Representatives of the association shared one rare exception of an adult with Down syndrome living independently without the support of a personal assistant.[81]
According to Pablo Zelis, the president of the Union of the Blind of Uruguay (UNCU) and a person who is blind, personal assistant services could benefit blind people, particularly those who recently became blind as adults, as a transitional tool to help them adapt to their new situation. However, he pointed out that the services provided by personal assistants under the care system do not fully cover the type of support required by individuals who are blind. As a result, they do not commonly utilize the care system.[82]
Human Rights Watch interviewed two deaf individuals, including Luis Lavega, a mediator within the deaf community. He said members of the deaf community hire mediators, instead of using the Personal Assistants Program, because mediators function like personal assistants. Beyond interpreting information into sign language, mediators undertake broader cultural interpretation tasks for the deaf community, such as interpreting behaviors that might be considered unusual by people unfamiliar with deaf culture. For example, while it is perfectly acceptable to stomp your feet on the ground to ask for attention in deaf culture, this behavior may seem odd to those outside the deaf community.[83]
Inadequate Support for People with Disabilities in Caregiving
The Personal Assistants Program does not address caregiving activities carried out by people with disabilities even though some have childcare responsibilities and could benefit from supports typically used for caregiving.
Vanessa Barbosa, a woman with cerebral palsy and the mother of a 5-year-old daughter, uses the personal assistant service, but she can only do so for her own personal needs, like feeding and dressing herself.[84] Vanessa’s mother provides support for all tasks related to caring for Vanessa’s daughter. Vanessa’s daughter receives an economic benefit because she is a child.[85]
Inadequate Training to Meet High-Support Needs
Human Rights Watch spoke to several people who said personal assistants are not trained to aid people with high-support needs, especially children and older people.
Human Rights Watch convened a meeting with five members of the Autism Federation of Uruguay, many of whom have children with autism and require substantial support. Lourdes Mantras, who has a 17-year-old son with autism and high-support needs, highlighted that finding a suitable assistant is challenging. She said that just one or two days after establishing a working relationship, personal assistants often left because they were overwhelmed by the difficulties of providing quality support for her son. The training and profiles of current personal assistants are not well-suited to meet the needs of individuals with autism, who sometimes require alternative communication techniques and considerable patience for certain behaviors. She said, “People prefer other jobs, such as being an autonomy facilitator in schools, which is perceived as less demanding than supporting a person with autism requiring high support.”[86]
Sandra Mónico, the mother of a teenage daughter with autism, said she uses the personal assistant services, which she found was especially useful when her daughter was young. She believes the quality of the service depended more on the personal skills of the personal assistant rather than their training, which she felt was very basic.[87]
Cristina Arbiza, the mother of a 23-year-old man with autism, told Human Rights Watch that she had used the Personal Assistants Program when her son was younger. However, as he grew older and became more active, she found that personal assistants were not equipped to handle a young adult who required more intensive attention and consequently stopped using the service. Like Lourdes Mantras, Arbiza observed high turnover among assistants, saying that assistants often lasted only two weeks due to the demanding nature of their jobs. Some individuals with autism struggle to trust new people, so such frequent changes and the accompanying need to constantly adapt to new assistants can render the service ineffective.[88]
Rosana Fierro, the mother of Jessica Almeida, a 25-year-old woman with autism, recounted her experience with the Personal Assistants Program. She did not receive the entire subsidy due to her family’s income and eventually stopped using the service because of a widespread concern within the autism community that personal assistants were inadequately trained to effectively support individuals with autism. She said:
I always have to be vigilant with Jessica; I can’t afford to be distracted. When she crosses the street, she does so without looking, which could lead to an accident…. The level of support Jessica requires is very high, so it would be more beneficial for me to receive financial assistance so that my family can help with her care, rather than relying on someone who may not be adequately trained for the necessary tasks.[89]
Human Rights Watch also spoke with Pablo Correa, the father of Santiago, a 20-year-old man who has spinal muscular atrophy. Pablo said he does not utilize the Personal Assistants Program because Santiago’s needs are so extensive that current personal assistants could not meet them. Santiago uses a respirator and gastric tubes for feeding, both of which necessitate very frequent and meticulous maintenance, which the Personal Assistants Program does not provide.[90]
Oversight and Accountability Challenges
In the beginning [2018], the person assigned to me as my personal assistant was quite good. However, during the pandemic, when the Uruguayan government started to provide more benefits to people with disabilities, my personal assistant began to show anger and resentment toward me. She started to insult me, and one day, she just stopped coming. I reported this situation to the integrated care system, but they told me it was an issue I had to resolve directly with this person. As I don’t have the resources to pay for severance, the personal assistant continues to charge the government but has stopped coming and no longer provides me with the service.
—Lucía Machiarena Silveira, Montevideo, August 15, 2023
The legal framework regulating personal assistant services establishes an employment relationship between the person requiring assistance (also referred to as the “user” or “beneficiary”) and the personal assistant.[91] First, the individual requiring assistance conducts interviews with personal assistants from a list provided by the Ministry of Social Development. Then, upon reaching an agreement, the service commences. The service guidelines allow a three-month trial period for both the individual requiring assistance and the personal assistant to determine if he or she meets their expectations. After this period, if the user chooses to terminate the personal assistant, they themselves must provide severance pay, which is usually a percentage based on how long the service was provided.[92]
Additionally, the system does not provide a replacement when the personal assistant takes their annual 20-day vacation entitlement.[93]
The National Integrated Care System and the Social Security Bank do not have systems to hold personal assistants accountable when problems arise. This lack of oversight can result in service deficiencies.
Challenges for Individuals Requiring Assistance
The labor courts resolve any disputes between the assisted individual and the personal assistant.[94] According to a care system official, Uruguayan labor laws are highly protective of the rights of workers (in this case, the personal assistant), including by offering free legal representation for their defense against wrongful termination.[95] Conversely, employers (in this case, the individual requiring assistance) do not have access to the same benefit, which can put them at a disadvantage.[96] Furthermore, although the Uruguayan government pays the wages of personal assistants, it does not cover termination costs. Consequently, if a user dismisses a personal assistant after three months, the user must provide severance pay.
“This creates significant difficulties for the service user who, because they are legally treated as an employer, lacks state-provided assistance to navigate conflicts in the labor courts,” a high-level care official told Human Rights Watch.[97]
Lucía Machiarena Silveira, a 33-year-old woman with a physical disability and autism, qualified for the Personal Assistants Program when she was 27. She received the maximum 80 service hours per month and full disability pension. Initially, Machiarena Silveira had a very good relationship with her personal assistant, but they started having problems when the assistant began intruding into her and her mother’s private lives. Machiarena Silveira’s mother also had a physical disability and lived with her until her death. The personal assistant offered unsolicited advice regarding their medications, and Machiarena recalled how the assistant once prevented Machiarena Silveira’s mother from taking a required Covid-19 test for hospital admission, which meant her mother could not receive the medical treatment she needed.[98]
During the early years of the pandemic, Machiarena Silveira and her mother had to live under strict health security measures, and the government provided them with additional support, including food and other benefits. Machiarena Silveira said her personal assistant began to resent the provision of these benefits and questioned why they received so much from the government. Machiarena Silveira said the personal assistant unexpectedly showed up at her home at 9 p.m. one day, yelling for about two hours that it was unfair for her to receive so many benefits before she left. Machiarena Silveira said her personal assistant never returned.[99]
Machiarena Silveira said she informed the authorities, who said it was a private matter that should be resolved directly with the personal assistant, possibly by reaching a settlement.[100] Because she is completely reliant on her disability pension, which she said she spends almost entirely on rent, Machiarena Silveira has had to take out loans to cover her other financial obligations. As a result, she was unable to pay the severance fee to terminate her personal assistant. Machiarena believed the assistant continued to receive a salary from the Social Security Bank even though she stopped providing Machiarena Silveira’s with services in 2020.[101] Human Rights Watch was unable to corroborate this account with the personal assistant because she was unavailable.
Due to Machiarena Silveira’s disability, she requires support for her mobility at home. She has to go downstairs to exit the building, and now that she lives alone without a personal assistant, it is difficult for her leave her home. “I could very well benefit from the Personal Assistants Program,” she said. “But since I already have a personal assistant registered in the system, I cannot request another person to support me.”[102]
Another example of the problems posed by inadequate monitoring and redress mechanisms in the care system can be seen in the situation of Florencia Santos. Santos, 32, reported difficulties with a personal assistant from the care system who violated the confidentiality and respect for private life clauses in their service contract by sharing details of Santos’ daily activities with her family members. Santos said she was forced to dismiss the personal assistant and seek a resolution from the labor court to avoid paying severance, which the court granted.[103]
Challenges for Personal Assistants
Some personal assistants form cooperatives for providing services.[104] Under this model, interested users who need support or care approach the cooperative, and the entity then selects the personal assistant from among its members. This model already operates in some departments, including Salto.[105] In Uruguay, Law No. 18407 regulates cooperatives, which are defined as “autonomous associations of people who voluntarily unite on the basis of self-effort and mutual aid, to satisfy their common economic, social, and cultural needs, through a jointly owned and democratically managed enterprise.”[106]
Various members of the cooperative in Salto department told Human Rights Watch that their organization could defend the interests of personal assistants.[107] They spoke of instances where service users engaged in bad practices, such as waiting until just before the end of the three-month trial period to stop services to avoid paying severance.[108] The cooperative in Salto protects the interests of personal assistants during situations like this, including by mediating conflicts between users and personal assistants when conflicts arise.[109]
This model could be replicated for users with disabilities in a way that defends their interests. Economic cooperatives protect the interests of individuals who come together to undertake economic activities, but it could also be worthwhile for people with disabilities to explore user cooperatives in which they have a space for interaction and the collective defense of their interests. One model for such organizations could be centers for independent living, which have been operating in some countries like the United States.[110] Centers for independent living have also been working in other countries such as Costa Rica.[111]
Lack of Involvement of Organizations of People with Disabilities in the Design and Implementation of the Care System
The Independent Living Movement for People with Disabilities in Uruguay drafted a proposal to regulate personal assistant services. In 2015, the law creating the integrated care system was passed, and it included an entire chapter prepared by the movement. However, the resulting product is different and does not align with the philosophy of independent living and international rights law. The disability organizations that are part of the movement were excluded from the debates, and in reality, they are not taken into consideration in the management of the system.
—Raquel González Barnech, member of the Independent Living Movement for People with Disabilities in Uruguay, Montevideo, Uruguay, July 20, 2023
The National Integrated Care System established an Advisory Committee that involves various sectors of civil society, including organizations of people with disabilities.[112] However, these groups’ level of influence on government policy has not been very significant according to some of their leaders.[113]
The care policy in Uruguay has been driven by the pro-care movement, a civil society collective focused on promoting recognition of unpaid care work, which is largely carried out by women.[114] A representative of the pro-care movement said organizations of people with disabilities did not participate actively in the design of the care system.[115] Another representative noted that due to the different disabilities among their representatives, organizations of people with disabilities struggled to agree on common points and present unified proposals concerning the system.[116]
Some organizations and experts working on disability rights have expressed concerns that the role of the personal assistant, as established in the 2015 legislation, and the growing world care agenda in general, does not align with the philosophy and values of the independent living movement for people with disabilities.[117] From their perspective, a personal assistant should be treated not merely as a care worker, but also as an enabler of the exercise of rights of people with disabilities. For example, they may enable a person with a disability to be able to live independently in the community and fully exercise their rights protected under the CRPD. They are concerned that the current design of the system leans too heavily toward a medical approach.[118]
Furthermore, people with disabilities were not included in designing the basic dependency care course, according to a representative from the National Institute of Employment and Vocational Training (INEFOP).[119] An official explained their exclusion by pointing out that the course focused more on the care of older people, despite including some components on supporting people with disabilities.[120]
Finally, people with autism face additional challenges. Five members of the Autism Federation of Uruguay said they did not have the opportunity to directly participate in the implementation of the care system, including by formally putting forward their needs. They also were not asked to share the perspectives of families of people with autism, who have significant requirements for support, in the development of personal assistant services.[121]
The Right to Live Independently
According to international law, the full realization of the right to live independently and the right to be included in the community in the context of support and care policies requires universal access to support for all people with disabilities and the involvement of people with disabilities in support services.
International Legal Framework
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) represents a paradigm shift in addressing the rights and needs of people with disabilities, including by recognizing their equality and right to equal recognition before the law as well as the autonomy and independence of adults.
The CRPD’s core principle of autonomy, articulated in articles 3 and 12 and further elaborated on in the CRPD Committee’s General Comment No. 1, includes the right of people with disabilities to make their own choices.[122] Ensuring their autonomy requires the transformation of traditional care policy frameworks into support systems that empower independent living and respect the will and preferences of individuals, enabling them to manage their own lives.
Article 19 of the CRPD enshrines the right to live independently and be included in the community, and CRPD Committee General Comment No. 5 provides further guidance on this right.[123] The General Comment emphasizes that support services should enable people with disabilities’ full participation in all aspects of life, as tailored to the individual’s needs and choices, thereby fostering their autonomy and self-determination.[124]
Institutionalization is a significant challenge to autonomy and self-determination. To address this, the CRPD Committee’s guidelines on deinstitutionalization strongly recommend that states parties move away from institutional care to providing community-based services that underscore the individual’s right to live independently.[125]
In summary, the CRPD’s provisions, the CRPD Committee’s General Comments, and its guidelines on deinstitutionalization use language focused on placing support at the center for the exercise of rights.[126] While the word “care” appears in some articles of the CRPD in the context of health care and support for people with disabilities to care for their children, as well as respite care, the word is not used in the context of the right of people with disabilities to independent living, which is precisely where the right to human support, including personal assistance, is developed, marking a shift from a “care” paradigm to one with support systems for independent living. This shift would not only change the terminology, but also reflects a deep commitment to the dignity, rights, and active participation of persons with disabilities in society.
Support for Independent Living for All People with Disabilities
Article 19 of the CRPD emphasizes the importance of independent living for all people with disabilities.[127] For their full participation in society, the related right to support for independent living is crucial.[128] These rights and others in the CRPD foster an inclusive world where any individual, including a child, with any type of disability can live independently and engage with their community on an equal basis with others.[129]
According to the CRPD Committee, the core elements of the right to live independently and be included in the community require states parties to “develop a concrete action plan for independent living for persons with disabilities within the community, including taking steps towards facilitating formal supports for independent living within the community.”[130] The right to access individualized, assessed support services is an economic, social, and cultural right that states parties need to progressively realize by taking steps to the maximum of their available resources.[131]
Support services should be “available, accessible, affordable, acceptable and adaptable to all persons with disabilities” and be “assessed using a personalized approach and tailored to the specific activities and actual barriers to inclusion in the community that persons with disabilities face.”[132] States should also make sure that personnel working in disability-related services are adequately trained on independent living in the community.[133] The CRPD Committee has indicated that such support should extend beyond mere assistance; it should facilitate choice, control, and freedom over the lifespan of a person with disabilities.[134]
Age-based restrictions on support for independent living can have far-reaching adverse impacts on the exercise of fundamental rights, such as the rights to have children, to work, and to education.[135] While Uruguay’s programs are important steps toward the realization of these rights, its restriction of access to the Personal Assistants Program based on age is likely to lead to arbitrary results. While the government’s rationale is that certain age ranges are likely to correlate with “dependency” or greater need, in practice, those ranges risk excluding many people who may have a greater need for access to the program than those included, potentially leading to arbitrary outcomes.[136]
There is also a robust body of research documenting that means-tested or so-called poverty targeted social protection programs, as a result of their design and implementation, are expensive, error prone, exacerbate social divisions and mistrust in government, and fail to adequately protect rights.[137]
From a rights-based perspective, Uruguay should work toward progressively providing universal coverage based on need. To the extent it engages in targeting of benefits meanwhile, it should ensure that eligibility criteria are objective, reasonable, and transparent, and avoid the stigmatization of beneficiaries.
Human Rights Model of Disability and Support for Independent Living
Under the human rights-based model of disability enshrined in the CRPD, the state’s role in administering support should focus on enabling that person to lead an independent life.[138]
Unlike medical and charity models of disability, which focus on the deficits of the person with a disability, the human rights model recognizes disability as a relational concept; that is, it understands disability in relation to the person’s environment and society.[139] It acknowledges that different people with disabilities may require different forms of support to lead an independent and autonomous life. Under this approach, any determination for support should be tailored to the individual, as opposed to a one-size-fits all assessment, by identifying not just their personal requirements, but also the social, attitudinal, and environmental barriers they face.[140]
Independent living is inextricably linked to the enjoyment of a wide range of other rights, including the rights to freedom of expression, to form a family, and to participate in community life.[141] Without support for independent living, many people cannot exercise these rights, effectively denying them the opportunity to contribute to and engage with society on an equal basis with others.[142]
Involvement of People with Disabilities in Support Services Design and Implementation
A core principle of international disability rights is the need for the active participation of people with disabilities in all decisions that concern them, including support services.[143] This is important because when people with disabilities lead and manage support services, they bring first-hand knowledge that can make these services more responsive and tailored to the needs of the disability communities they serve.[144] Such participatory governance ensures that policies and programs consider the realities of those who will use them, thereby fostering empowerment and increasing their effectiveness and relevance.[145]
In fact, the CRPD directs states parties to consider disability in all policies and to ensure that people with disabilities are given the same consideration as others before the law.[146] In addition, to account for disabilities, such a policy should adopt a gender and life-course perspective in recognition of the unique needs and rights of women, children, and adolescents with disabilities.[147]
Recommendations
To the Congress of Uruguay
- Reform Law No. 19353, which establishes the National Integrated Care System, to:
Decouple the concept of “personal assistance” from “dependency,” and explicitly establish the right to independent living for people with disabilities and older people;
Add “support for independent living” as a form of assistance for adults with disabilities;
Broaden support for daily activities to include assistance in decision-making or activities related to caring for children
Increase the number of hours for and days on which personal assistance can be received, including on weekends, on government holidays, and through alternative coverage during the regular personal assistant’s vacations, allowing for flexibility to cover the needs of the individual requiring assistance; and
Create a government-funded mechanism for organizations of people with disabilities to provide personal assistance services, modeled after centers for independent living, that are managed mostly, if not entirely, by people with disabilities.
Reform the civil legislation of Uruguay, including notary legislation, to recognize the right to full legal capacity of all people and their right to access supported decision-making.
To the National Institute of Employment and Vocational Training (INEFOP)
- Establish guidelines that require the government to proactively invite organizations of people with disabilities, according to international human rights law, standards, and principles, including the right to independent living, and that allow such organizations to directly participate in developing the content for the basic dependency care course for aspiring personal assistants.
- Develop and implement mandatory training and coaching programs for personal assistants to cover the needs of people with different disabilities recognized by international law, including people with physical, sensory, developmental, intellectual, and psychosocial disabilities (or mental health conditions).
- Develop and implement mandatory training and coaching programs specifically for personal assistants for people with disabilities with high-support needs.
To the Ministry of Social Development
Publicly demonstrate how the government is using the maximum of its available resources to provide personal assistant services to the broadest possible number of people with disabilities, and develop a public plan outlining how the government will, as expeditiously and effectively as possible, increase the level of support to cover the full costs, ensuring that all people with disabilities can access adequate support to live independently and in the community, without limitations based on age, income, and so-called severity of dependency.
Review the age-based restrictions on its personal assistants program and work progressively to the maximum of its available resources toward making its programs that provide support for independent living, including the Personal Assistants Program, universal on the basis of a person’s needs.
Eliminate the requirement to consider the income of the family of any adult applying for the service so only the income of the individual requiring assistance is used to determine eligibility.
- Create oversight and accountability mechanisms, involving the direct participation of organizations of people with disabilities, to monitor the services provided by personal assistants and resolve disputes between individuals requiring assistance and personal assistants.
- Conduct studies on people with disabilities and older people living in institutions to:
- Determine their number and needs so they can exercise their right to live in the community; and
- Lead to the closure of institutions and sufficient investment in independent living, including adequate supports, so people can live in the community.
Acknowledgments
The report was researched and written by Carlos Ríos-Espinosa, associate director in the Disability Rights Division.
It was edited by the senior editor in the Disability Rights Division and Elizabeth Kamundia, acting director of the Disability Rights Division. Babatunde Olugboji, deputy program director, and María McFarland Sánchez-Moreno, senior legal advisor, provided programmatic and legal reviews, respectively.
The following Human Rights Watch staff provided specialist reviews: Bridget Sleap, senior researcher on the rights of older people in the Disability Rights Division; Santiago Mena, researcher in the Americas Division; Rachel LaFortune, researcher in the Women Rights Division; Zama Neff, director of the Children’s Rights Division; and Sylvain Aubry, deputy director of the Economic Justice and Human Rights Division.
Subhajit Saha, senior coordinator in the Disability Rights Division, provided editorial assistance as well as production assistance and support. The layout and production were done by Ivana Vasić, graphic designer; Travis Carr, publications officer; Jose Martinez, administrative officer; and Fitzroy Hepkins, senior administrative manager.
Human Rights Watch thanks Raquel González Bernech, Martin Nieves, and Carla Chiapini for sharing their knowledge and expertise on the care economy and the rights of people with disabilities in Uruguay.
Most importantly, we thank the people with disabilities in Uruguay whose courage and dignity in sharing their stories and experiences made this report possible. We recognize and share their hope that this report will contribute to protecting the rights of people with disabilities in Uruguay.
