October brings together the International Day of Older Persons and the International Day of Care and Support, a timely opportunity to explore where aging, disability, care and support intersect.
As momentum grows towards a UN Convention on the Rights of Older Persons, these conversations are becoming increasingly important: how can we ensure that people can age with dignity, autonomy and choice, with the support they need to live in their communities? As We Age: Rethinking Care and Support explores these questions across the life course throughout the month, with in-depth responses from Deputy Director Maria Ní Fhlatharta, board member Rosangela Berman Bieler, and CIP Senior Research Associates María Pereira and Abner Manlapaz.
Disability inclusion often focuses on participation during childhood and working age, for instance, in education and employment. What might we be missing by paying less attention to older persons with disabilities?
Rosangela: As a 69-year-old woman who has lived with quadriplegia for 50 years, I believe we are overlooking a critical dimension of disability inclusion: the right to age with autonomy, dignity, and continued participation in society.
Much of our attention has rightly focused on education, employment, and participation during childhood and working age, although we are still far from achieving the levels of inclusion, accessibility, and equal opportunities that are needed, even in these areas. But what happens when persons with disabilities grow older? And what about the millions of people who acquire disabilities or experience increasing functional limitations as they age?
From my personal experience, access to adequate care and support services, including personal assistance, family and community support, accessible housing, and assistive technology, is essential to maintaining autonomy and quality of life. These are not simply healthcare needs. They are fundamental conditions for exercising our rights, making our own decisions, and continuing to contribute to society.
Are care and support systems prepared for a future in which more persons with disabilities reach older age, and more people acquire disabilities as they age? What needs to change?
Abner: Care and support systems are unprepared for the future of older people because they remain fragmented, respond mainly after needs arise in later life, and fail to address inequalities that accumulate across the life course. Systems must therefore shift to coordinated, life-course support that prevents early disadvantage, ensures accessible and affordable services, covers disability-related costs, strengthens social protection and community-based independent living, and safeguards dignity, choice and autonomy as needs evolve.
Maria N: States are often looking for a single policy lever that can ensure that people’s support needs are met, but when it comes to ensuring that people can age in place, we need a multifaceted approach. Sometimes, decisions made decades before a person needs support determine if their needs can be met: housing, community connection, accessibility of local services.
States can incentivize better decisions earlier. Ensuring housing is built in line with accessibility standards is a great example. Property developers don’t have an incentive to ensure that there is an accessible bathroom or entrance, and non-disabled people choosing where to live in their 30s and 40s may never think about them; however, these factors can determine whether someone can age in their own home. If states ensure that new builds and retrofitting are done in line with accessibility standards, they can ensure that people can receive care and support in their own homes. The same goes for urban planning and the need to build strong communities. These are often not thought about as relevant to care and support for older persons; however, they are foundations upon which these services can be delivered.
Rosangela: At a time when many countries are struggling with the financial sustainability of their social protection systems, this requires a fundamental shift in perspective. Investing in inclusive support systems is not simply a growing social expenditure; it is an investment in people’s well-being, autonomy, and ability to contribute to society. With appropriate support, older persons with disabilities can continue working when they choose to, participating in their communities, sharing their knowledge and experience, and contributing socially and economically. Their rights and dignity, however, must never depend on their economic productivity.
What happens to traditional distinctions between “caregivers” and “care recipients” as both persons with disabilities and their family members grow older?
María P: From 1950 to 2023, the average life expectancy around the world has increased from 46 years to 73 years, and unequally, people with disabilities have also benefited from this increase. For instance, many specific conditions associated with disability that used to be associated with shorter life expectancies in the past, even only to childhood, today have much higher life expectancies. This is the case for polio, cystic fibrosis, Down syndrome, and many other conditions associated with disability. This is great and should be celebrated.
However, as a society, we have not advanced at the same rate to ensure that these persons with disabilities and their caregivers and supporters are supported to age with dignity. Women, including women with disabilities, provide more care and support, for more years.
Yet these women, both because of their age and disabilities, will have care and support needs of their own that surpass the needs of women without disabilities. Hence, women with disabilities and their spouses are more likely to be both caregivers and care recipients. Similarly, aging parents of adults with a disability may be acquiring support needs themselves while continuing to be the primary support person for an adult with a disability. The distinction is not clear-cut, and care policies should hence recognize that in a rapidly aging world, the needs of caregivers and care recipients converge.
How do inequalities experienced throughout life shape the aging experiences of people with disabilities?
Abner: These inequalities can accumulate and interact over time: inadequate childhood support may limit education, employment, income and social protection, contributing to poorer health and greater insecurity in older age. Disability-related costs and accessibility barriers can intensify each effect. Consequently, aging with disability requires a life-course and equity perspective. Some people enter later life with accumulated poverty, poorer health, limited pensions, weak social networks and unmet needs; others benefit from inclusive education, decent work, social protection, accessible environments and community support. Life-course inequalities accumulate, shaping how people with disabilities age. Early disadvantage can limit later opportunities, health, economic security and social participation. Aging therefore reflects not only impairment or age, but also social determinants and opportunities across life.
María P: It is well-established that people with disabilities around the world face increased barriers to inclusion across a range of areas throughout their lives. This has important implications as people age. Abner talked about how inequalities in access to healthcare can compound in older age and can result in early, preventable mortality, for instance. Employment is another area where people face barriers that then can affect them as they age. People with disabilities who have faced barriers to participating in the formal labor market are at a disadvantage when it comes to contributory retirement and pension plans as well as savings. Because the extra costs of disability are so high for some people with disabilities, universal, non-contributory retirement pensions may not be enough to cover these extra costs in retirement. Thus, once people with disabilities are no longer able to work because of their age, they are left particularly vulnerable to income poverty and exclusion.
As demand for care and support grows, families and public systems may feel pushed towards institutional solutions. How can countries expand sustainable support in line with the person’s will, preferences, and right to live in the community?
Maria N: The only thing that is clear is that institutions are never an acceptable way to meet someone’s care and support needs – regardless of level of support need or age. States have an obligation to provide various different forms of support in the community, maximizing people’s natural support systems, while also ensuring that they have access to professional community-based services. Sometimes people’s decisions are undermined by a lack of services – but services alone are insufficient to ensure that people’s support is in line with their will and preference. In order to ensure that their support is in line with their own will and preferences, we have to abolish systems which deny legal capacity, or decision-making rights. Often the choice about where to live is restricted by outdated capacity tests that remove someone’s decision-making rights. Even where formal systems aren’t applied, the threat of losing decision-making rights, or the perception of losing decision-making rights, can result in people being coerced or forced into decisions that they don’t agree with.
Rosangela: Most importantly, we must challenge the assumption that growing older, particularly with a disability, inevitably means losing autonomy or becoming a passive recipient of care. Needing support does not mean losing the right to make decisions about one’s own life. If disability inclusion is truly a lifelong commitment, it cannot end when people retire or grow older. We need inclusive systems that recognize human diversity at every stage of life and ensure that the additional years people are living are years of dignity, choice, participation, and belonging.
Join us throughout October as we rethink what it takes to support people as they age, and what needs to change to make dignity, autonomy and choice a reality.
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