Submission to the Independent Expert on the enjoyment of all human rights by older persons

Introduction

This submission is based on Human Rights Watch’s research on the care law in Uruguay in 2024 regarding the characterization of some older persons as “dependent” and “living in situations of dependency.” In addressing practices that may unintentionally undermine the autonomy, dignity or participation of older persons, this submission also relies on Human Rights Watch’s research on the use of chemical restraints in care settings carried out between 2016 and 2017 in the United States and between 2018 and 2021 in Australia.

1. Problematic Characterization of Some Older Persons as “Dependent” and “Living in Situations of Dependency”

The Independent Expert’s call for submissions is based on “a vision of ageing in which situations of dependency do not necessarily lead to diminished autonomy, social exclusion, or erosion of human dignity.” While older persons’ autonomy, social inclusion and human dignity are central to their enjoyment of human rights, the framing of this vision risks reinforcing entrenched norms and ageist stereotypes that older persons are inherently, or will inevitably become, “reliant,” and “dependent” on others, and “live in situations of dependency.”

In 2024, Human Rights Watch documented Uruguay’s shortcomings in meeting the support requirements under its National Integrated Care System for everyone entitled to support services. Dependency is an overarching concept used by Uruguay’s care law, Law No. 19353, to describe older persons, persons with disabilities and children under 12 who require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life. 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.” The 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.” Whether someone is eligible for services depends on an assessment of that person’s level of dependency, which officials determine using the National Integrated Care System’s Dependency Scale.

Despite its central role in structuring access to care under the law, the concept of “dependency” raises significant concerns from a human rights perspective. When applied to older persons and persons with disabilities, it is problematic because it frames their situation as an individual deficit that can be determined and measured objectively, while disregarding the social environment in which the person develops. The concept of “dependency” is also problematic as it is based on the assumption that some older persons and persons with disabilities are not autonomous because they cannot carry out daily living activities on their own, which is a misconception. 

This framing of older persons as dependent has had a negative impact on their access to services under the law. The right to a personal assistant 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; and who are under 29 years old or are 80 or over. 

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. In relation to older age, an initial proposal to begin with people 85 and older was amended in 2017 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. This age-based dependency criteria affords access to personal assistants to some older persons. However, basing access to support services on an age-based concept of dependency also denies access to services to people ages 79 and younger who may also require support to live independently, leading to arbitrary outcomes. From a rights-based perspective, Uruguay should work toward progressively providing universal coverage based on need.

Terms like “dependency” and “reliance on others” or “reliance on care” reproduce concepts inherent to medical models of older age and disability, which focus on the deficits of the person. While many older persons are users of care and support services, language that frames their use of those services as older persons being “dependent” or “reliant” can undermine their dignity and reinforce self-internalized negative ageist attitudes toward their own older age, with harmful health and other outcomes. 

On the other hand, the human rights model, as exemplified by the United Nations Convention on the Rights of Persons with Disabilities (CRPD), obligates states parties like Uruguay, which ratified the CRPD in 2009, to treat persons with disabilities, including older persons with disabilities, as full, autonomous rights-holders who actively contribute to the development of society and have the right to support systems tailored to their needs that empower independent living. Thus, Uruguay’s care law’s characterization of older persons and persons with disabilities as “dependent” is in direct tension with the state’s obligations under the CRPD. 

The CRPD represents a paradigm shift in addressing the rights and needs of persons with disabilities including older persons with disabilities, by, among other things, 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 persons with disabilities to make their own choices. 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. The General Comment emphasizes that support services should enable persons 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.

The misalignment of a dependency approach with international standards on the rights of persons with disabilities is highly pertinent to older persons and the enjoyment of their human rights. First, older persons are disproportionately affected by disability. Second, assumptions of dependency are heightened and reinforced by ageist prejudices that older persons are burdens on their family and society more broadly. The World Health Organization has found being “dependent on care” as a risk factor for ageism, the “dependency ratio” as an example of ageism as it assumes all older persons are dependent, and negative stereotypes of older persons as dependent and burdensome as potentially “making violence against older people more permissible.” 

The Independent Experts’ own narrative, if based on dependency, would also conflict with international human rights standards in the CRPD, because its conceptual basis is that older persons will inevitably become “dependent” and live “in situations of dependency,” rather than older persons having the right to live independently, with support if required, in line with their will and preferences. A narrative based on dependency and reliance on others also risks projecting a negative image of older persons, portraying them as a burden to society and their families, which could stigmatize them further. As Michelle Bachelet, the former UN High Commissioner for Human Rights said, “To combat ageism, we must shift our mindsets and challenge the narrative of older people as frail, dependent and vulnerable.”

Recommendations for the Independent Expert

1. Refrain from characterizing older persons as “dependent” and “living in situations of dependency,” and from referring to their “reliance on care” and “reliance on others.”
2. Reframe this report in line with international human rights law and standards, including older persons’ right to live independently in the community with access to care and support. Under such a human rights framing, an alternative report title could be: “Autonomy, Dignity and Human Rights in Care and Support Settings.”

2. Question 4: Are there legal, institutional or social practices that may unintentionally undermine the autonomy, dignity or participation of older persons in situations of dependency? 
a. Examples: overprotection, automatic substitute decision-making, restrictive care practices, exclusion from social life.

Chemical Restraint of Older People in Residential Care Facilities

Several international conventions prohibit torture and other cruel, inhuman or degrading treatment or punishment. “Chemical restraint” is the use of medications to control behavior without a therapeutic purpose. Antipsychotic drugs almost double the risk of death in older people with dementia.

Human Rights Watch’s research in 2020 and 2021 on older people in nursing homes in the United States documented serious concerns including extreme weight loss, dehydration, untreated bedsores, inadequate hygiene, mental and physical decline, and inappropriate use of psychotropic medications among nursing home residents. Staffing shortages, a longstanding issue that was a significant problem during the Covid-19 pandemic, and the absence of family visitors, many of whom nursing homes rely on to help staff with essential tasks, may have contributed to possible neglect and decline. In 2024, the Centers for Medicare & Medicaid Services (CMS) released federal minimum staffing standards for nursing homes. University of Pennsylvania research showed their implementation could save thousands of lives annually. Despite this, in December 2025, CMS issued an interim final rule rescinding the minimum staffing standards in nursing homes, to go into effect on February 2, 2026, citing a new federal law that barred enforcement of the rule until 2034, court rulings that invalidated key provisions, and concerns that the requirements posed disproportionate burdens on rural and Tribal facilities.

In Australia, Human Rights Watch has documented the widespread use of chemical restraint in aged care facilities. As best as Human Rights Watch could determine, staff in the aged care facilities where Human Rights Watch conducted research did not seek or secure informed consent prior to giving these medications. In addition, family members who had powers of attorney (legal authority to act on another’s behalf) to make decisions on behalf of their relatives in aged care facilities told Human Rights Watch that facility staff did not seek their informed consent for the medications used as chemical restraints. Many relatives said they only learned that their relatives had been given medications after they received pharmacy bills listing the medications.

Human Rights Watch found that the existing model of complaints did not appear to be addressing the complaints of older people in aged care facilities in Australia to a unified, high standard. People could make complaints about treatment, conditions, or other issues in aged care facilities to the Aged Care Quality and Safety Commission (ACQSC), the primary government agency responsible for monitoring aged care in Australia. Family members of aged care facility residents who filed complaints about chemical restraint to the ACQSC and other agencies described that in some cases, complaint mechanisms were difficult to use. Some other family members said complaints officers referred them back to the facility, with complaints not being resolved.

“Marie’s” 99-year-old mother had been given risperidone without her knowledge or informed consent in a facility on the Gold Coast. She had additional complaints about the facility using a physical restraint and inadequate numbers of staff to support residents to eat at mealtimes. Marie told Human Rights Watch about her experience when she called to file a complaint in 2016: 

I rang up the Queensland Aged Care Ombudsman [now the Aged Care Quality and Safety Commission]. They were so rude I was in tears. They said, “You’ve got three [complaints], and you can only have one,” and she was angry. She said, “Make up your mind! You can have just the [complaint about] risperidone, the restraint on your mother’s stomach, or not feeding her.” It was cruel. I just left it.

The CRPD, which Australia ratified in 2008, requires informed consent for examination, diagnosis, medical treatment and interventions. The CRPD Committee has determined that treating an adult with medications without consent is a violation of the right to equal recognition before the law, the right to personal integrity, and the right to freedom from violent exploitation and abuse, as well as the right to freedom from torture and inhuman and degrading treatment. 

Australia’s Quality of Care Amendment (Restraints Principles) were introduced in mid-2019 to minimize the use of restrictive practices, with updated regulations introduced to replace them on June 30, 2021. The regulations fall short of an outright ban but require informed consent for the use of a “restrictive practice.” Human Rights Watch’s review of non-compliance reports for aged care facilities across Australia from July 1, 2020 to June 30, 2021 found the misuse of chemical restraints in more than 150 aged care facilities, despite these regulations. The Aged Care Act, introduced in 2024 to protect the human rights of users of aged care services, fails to ban chemical restraint and only seeks to minimize its use.

Recommendations For Governments

1. Ban all use of chemical restraints;
2. Require a standardized protocol for obtaining free and informed consent from the individual whose care is concerned, including with support as needed in the decision, or the appointed representative of the older person, as long as this representative is chosen freely and tasked with reflecting the individual’s will and preferences before, during, and for the continuation of medical treatment;
3. Ensure meaningful penalties for failure to obtain informed consent; and
4. Develop and implement models of supported decision-making to enable people using care and support services to make their own decisions about treatment and care.

1. ^ Human Rights Watch, “I, Too, Wish to Enjoy the Summer”: Gaps in Support Systems for People with Disabilities in Uruguay,” (New York: Human Rights Watch, 2024), https://www.hrw.org/sites/default/files/media_2024/09/uruguay0924%20web_2.pdf.
2. ^ Human Rights Watch, “They Want Docile”: How Nursing Homes in the United States Overmedicate People with Dementia (New York: Human Rights Watch, 2018), https://www.hrw.org/report/2018/02/05/they-want-docile/how-nursing-homes-united-states-overmedicate-people-dementia; Human Rights Watch, “Fading Away”: How Aged Care Facilities in Australia Chemically Restrain Older People with Dementia (New York: Human Rights Watch, 2019), https://www.hrw.org/report/2019/10/15/fading-away/how-aged-care-facilities-australia-chemically-restrain-older-people; “Australia: Chemical Restraint Persists in Aged Care,” Human Rights Watch news release, March 30,2022, https://www.hrw.org/news/2022/03/30/australia-chemical-restraint-persists-aged-care.
3. ^ “Call for input on "Autonomy, dignity & human rights in situations of dependency in older age" by the Independent Expert on the enjoyment of all human rights by older persons,” undated, https://www.ohchr.org/en/calls-for-input/2026/call-input-autonomy-dignity-human-rights-situations-dependency-older-age.
4. ^ Human Rights Watch, “I, Too, Wish to Enjoy the Summer,” https://www.hrw.org/sites/default/files/media_2024/09/uruguay0924%20web_2.pdf.
5. ^ Creación Del Sistema Nacional Integrado De Cuidados (SNIC), Law No. 19353, 2015, https://www.impo.com.uy/bases/leyes/19353-2015, art. 8.
6. ^ Ibid., art. 3(b).
7. ^ Ibid., art. 3(d).

8. ^

   Sistema de Cuidados, “Baremo De Dependencia (Dependency scale application form),” undated, https://www.gub.uy/sistema-cuidados/sites/sistema-cuidados/files/documentos/publicaciones/formulario-de-aplicacionbaremo-de-dependencia.pdf (accessed October 23, 2023).

9. ^ Sistema de Cuidados, “La Construcción del Cuarto Pilar de la Protección Social en Uruguay,” undated, https://pmb.parlamento.gub.uy/pmb/opac_css/doc_num_data.php?explnum_id=688, pp. 82-83.
10. ^ Ibid.
11. ^ Human Rights Watch, “I, Too, Wish to Enjoy the Summer,” https://www.hrw.org/sites/default/files/media_2024/09/uruguay0924%20web_2.pdf.
12. ^ Perera, I., Kotsani, M., Duque, S. et al., “ Challenging ageist language: promoting dignity and respect in healthcare communication,” Eur Geriatr Med 16 1983–1985 (2025), accessed June 8, 2026, https://doi.org/10.1007/s41999-025-01313-w. 
13. ^ UN Convention on the Rights of Persons with Disabilities (CRPD), adopted December 13, 2006, G.A. Res. 61/106, Annex I, UN GAOR, 61st Sess., Supp. (No. 49) at 65, UN Doc. A/61/49 (2006), entered into force May 3, 2008.
14. ^ UN Committee on the Rights of Persons with Disabilities, General Comment No. 1, “Article 12: Equal Recognition Before the Law,” CRPD/C/GC/1 (2014), para. 4; CRPD, arts. 3(a), 12(2), and 19(1); and Marianne Schulze, “Understanding the UN Convention on the Rights of Persons with Disabilities,” July 2010, https://www.internationaldisabilityalliance.org/sites/default/files/documents/hi_crpd_manual2010.pdf, p. 44.
15. ^ UN Committee on the Rights of Persons with Disabilities, General Comment No. 5: on Article 19 – the right to live independently and be included in the community, U.N. Doc. CRPD/C/GC/5 (2017).
16. ^ Ibid., paras. 4 and 16.
17. ^ See, for example, Sonja Stiebahl, Shadi Danechi and Rachael Harker, “UK disability statistics: Prevalence and life experiences,” House of Commons Library, November 17, 2025, https://researchbriefings.files.parliament.uk/documents/CBP-9602/CBP-9602.pdf (accessed June 8, 2026), p.10.
18. ^ World Health Organization, “Global Report on Ageism,” March 18, 2021, https://www.who.int/teams/social-determinants-of-health/demographic-change-and-healthy-ageing/combatting-ageism/global-report-on-ageism (accessed June 8, 2026), pp. 71, 30 and 54. 
19. ^ United Nations Office of the High Commissioner for Human Rights, “Eliminate ageism and age discrimination, says UN expert,” October 1, 2021, https://www.ohchr.org/en/stories/2021/09/eliminate-ageism-and-age-discrimination-says-un-expert (accessed June 8, 2026).
20. ^ US Drug and Food Administration, “Information for Healthcare Professionals: Conventional Antipsychotics,” June 16, 2008, https://wayback.archive-it.org/7993/20171102213617/https:/www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm124830.htm (accessed November 4, 2024).
21. ^ “US: Concerns of Neglect in Nursing Homes,” Human Rights Watch news release, March 25, 2021, https://www.hrw.org/news/2021/03/25/us-concerns-neglect-nursing-homes.
22. ^ Ibid.
23. ^ Centers for Medicaid and Medicare Services, “Medicare and Medicaid Programs; Minimum Staffing Standards for Long-Term Care Facilities and Medicaid Institutional Payment Transparency Reporting,” May 10, 2024, https://www.federalregister.gov/documents/2024/05/10/2024-08273/medicare-and-medicaid-programs-minimum-staffing-standards-for-long-term-care-facilities-and-medicaid (accessed November 4, 2024).
24. ^ Letter from Rachel Werner and Norma Coe, University of Pennsylvania to Senator Elizabeth Warren, July 8, 2024, https://www.warren.senate.gov/imo/media/doc/letter_from_researchers_to_sen_warren_070824.pdf (accessed November 4, 2024).
25. ^ Federal Register, “Medicare and Medicaid Programs; Repeal of Minimum Staffing Standards for Long-Term Care Facilities,” December 3, 2025, https://www.federalregister.gov/documents/2025/12/03/2025-21792/medicare-and-medicaid-programs-repeal-of-minimum-staffing-standards-for-long-term-care-facilities (accessed March 4, 2026).
26. ^ Human Rights Watch, “‘Fading Away’: How Aged Care Facilities in Australia Chemically Restrain Older People with Dementia,” October 15, 2019, https://www.hrw.org/report/2019/10/15/fading-away/how-aged-care-facilities-australia-chemically-restrain-older-people.
27. ^ Human Rights Watch, Fading Away: How Aged Care Facilities in Australia Chemically Restrain Older People with Dementia.
28. ^ Aged Care Quality and Safety Commission, What to do if you have a complaint, https://www.agedcarequality.gov.au/contact-us/complaints-concerns/what-do-if-you-have-complaint (accessed February 10, 2024).
29. ^ Human Rights Watch, Fading Away: How Aged Care Facilities in Australia Chemically Restrain Older People with Dementia.
30. ^ Convention on the Rights of Persons with Disabilities (CRPD): resolution adopted by the UN General Assembly, January 24, 2007, A/RES/61/106, available at: https://www.refworld.org/docid/45f973632.html, art. 25 (“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” Article 25(d) further specifies that states shall “[r]equire health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent” [emphasis added].).
31. ^ CRPD Committee, General Comment No. 1, para. 41, citing CRPD arts. 14 and 25.
32. ^ Ibid., para. 42, citing CRPD arts. 15-17.
33. ^ Susan Kurrle, “Chemical restraint: legislative changes to “restrictive practices,” Medical journal of Australia, July 19, 2021, https://insightplus.mja.com.au/2021/26/chemical-restraint-legislative-changes-to-restrictive-practices/.
34. ^ The Parliament of the Commonwealth of Australia, House of Representatives, “Aged Care and Other Legislation Amendment (Royal Commission Response No. 1) Bill 2021,” https://parlinfo.aph.gov.au/parlInfo/download/legislation/bills/r6723_aspassed/toc_pdf/21066b01.pdf;fileType=application%2Fpdf, para. 54-10, 1(f).
35. ^ “Australia: Chemical Restraint Persists in Aged Care,” Human Rights Watch news release, March 30, 2022, https://www.hrw.org/news/2022/03/30/australia-chemical-restraint-persists-aged-care#:~:text=A%20Human%20Rights%20Watch%20review,the%20use%20of%20restrictive%20practices.
36. ^ Aged Care Act, No. 104, 2024, https://www.legislation.gov.au/C2024A00104/asmade/text (accessed March 4, 2026), Division 2, para. 18.