Uruguay is among the first countries in the Americas to provide personal assistance for people with disabilities in their care system, but has yet to provide services for everyone who require them for independent living.The program is riddled with gaps that leave many people with disabilities unable to access the support they need because it is limited by age and provided for limited hours.The government should involve organizations of people with disabilities in redesigning, implementing, and monitoring the system to ensure a rights-aligned care and support system.”
(Montevideo) – Uruguay, is among the first countries in the Americas to include personal assistance as part of their national care system, but it has yet to provide adequate services to support the independent living of all people with disabilities, which affects their enjoyment of other human rights, Human Rights Watch said in a report released today.
The 94-page report, “I, Too, Wish to Enjoy the Summer”: Gaps in Support Systems for People with Disabilities in Uruguay, documents Uruguay’s shortcomings in meeting the support requirements under its National Integrated Care System for everyone with a disability. Many are ineligible for the care system’s Personal Assistants Program due to their age, income, or how “severe” their disability is. People with certain types of disabilities, like intellectual and sensory disabilities, and those with high-support requirements, are effectively excluded from the program because personal assistants are not trained to support them. Human Rights Watch found that Uruguay has not sufficiently involved organizations of people with disabilities in the design, administration, and monitoring of personal assistance under the care system, resulting in its failure to recognize users as rights-holders and its delivery of inadequate, limited services.
“Even though Uruguay is one of the first countries in Latin America providing personal assistance, its program is riddled with gaps that leave many people with disabilities unable to access support,” said Carlos Ríos Espinosa, associate disability rights director at Human Rights Watch. “The government should expand its care system to cover everyone with a disability, regardless of demographic factors or their type of disability.”
In August 2023, Human Rights Watch interviewed 60 people, including 30 people with disabilities, in Montevideo and Salto departments. The people with disabilities interviewed had physical, sensory, intellectual, and psychosocial disabilities. Some had high-support needs, such as people with autism.
Most of the people interviewed could not access the Personal Assistants Program, which is restricted to those age 29 and younger and 80 and older. Adriana Paciel, a 56-year-old lawyer with a physical disability who needs support to get out of bed, shower, and eat, is one of the many excluded due to age. She is among the few enrolled in Uruguay’s extremely small Partial Support Program, which provides 20 hours per month of personal assistance. A personal assistant helps her with some tasks three times a week for two hours.
The very limited number of hours of support, coupled with the inability to negotiate the personal assistant’s schedule, has reduced professional opportunities for Paciel. For example, Paciel cannot apply for government jobs, which generally start at 9 a.m., because the assistant is not available until noon.
People in the Personal Assistant Program receive a subsidy to hire a personal assistant for a maximum of 80 hours a month. The amount of the subsidy depends on the severity of their disability, their level of “dependency,” and the income of both the user and their immediate family members. Human Rights Watch found that 80 hours a month is insufficient and forces people to compress their activities, often sacrificing some essential activities. The program does not cover holidays, so people with disabilities must rely on their families or neighbors during that time.
“I, too, wish to enjoy the summer, but it’s not feasible due to my personal assistant’s vacation,” said a man with a physical disability who participates in the program.
Human Rights Watch also found a lack of sufficient oversight and accountability by the Social Development Ministry, which administers the Personal Assistants Program. Furthermore, while the government covers personal assistants’ salaries and social benefits, the user must provide severance pay if they discontinue the service after they have had it for at least three months. With no administrative process to resolve conflicts, users must litigate their rights in the labor courts.
Lucía Machiarena, a woman with a physical disability and autism, qualified for the Personal Assistants Program. She hired someone who initially supported her well, but their relationship soured over time. She said that one night, the personal assistant showed up at her house and started yelling, and then never returned.
She said the assistant continued to receive her salary from the government even though her services stopped in 2020. “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.”
Uruguay’s National Integrated Care System problematically characterizes eligible people with disabilities and older people who cannot carry out daily living activities on their own as being in “situation of dependency.” Such a characterization wrongly implies that people with disabilities lack autonomy and presents a negative image of people with disabilities that is inconsistent with international standards grounded in respect for their rights and autonomy, Human Rights Watch said.
A key problem underpinning the others has been Uruguay’s failure to adequately consult organizations of people with diverse disabilities in its design and management of the care system, which has contributed to the access, oversight, and accountability problems that Human Rights Watch uncovered.
Under the Convention on the Rights of Persons with Disabilities, anyone with a disability has the right to support so they can live independently. Uruguay is obligated to take measures to progressively realize this right to the maximum of its available resources, including from international cooperation, which requires among other steps that it immediately develop a concrete action plan to achieve that outcome.
“Uruguay should expand its National Integrated Care System to eliminate restrictions that risk arbitrary results, such as those based on age, so that support for independent living is based on what the individual requires,” Ríos Espinosa said. “It should also closely involve organizations of people with disabilities in redesigning, implementing, and monitoring the system to ensure their access to a truly human rights-aligned care and support system.”
