About the Research
CIP’s second Disability Policy Insights brief argues for disability inclusion in the care agenda, backed by data from 12 countries.
Care policy and disability policy have developed almost entirely separately. This second brief in the Disability Policy Insights series, argues that disability inclusion in the care agenda isn’t optional if either sector wants policies to actually work. Written by Maria Antonella Pereira of the Center for Inclusive Policy (CIP), the brief lays out where the overlap is largest, and what a genuinely integrated care system would need to look like.
Where Can You Watch and Download This Brief?
The brief is available as a full PDF report, and CIP has also produced an accompanying video walking through its main findings.
Why Have Care Policy and Disability Policy Stayed Separate?
The global care agenda grew out of a real and urgent problem: women and girls, especially in low- and middle-income countries, provide the overwhelming share of unpaid care, often at the cost of their own education, income, and autonomy. That agenda has understandably centered women caregivers. Meanwhile, the disability movement has pushed in a different direction, toward deinstitutionalization, independent living, and the right to the human support people need to participate on equal terms. Both agendas share the same underlying goal, improved participation in society and socioeconomic inclusion, but they rarely talk to each other.
Why Should Disability Inclusion Matter For the Care Agenda?
The brief gives three reasons. First, on average, people with disabilities have more care and support needs than their counterparts without disabilities. Second, despite having more needs, most of these needs remain unmet. Third, many people with disabilities, especially women and girls with disabilities, provide care and support. The brief discusses these reasons with data from disability surveys in 12 countries.
Why Do Persons with Disabilities Have Higher Care Needs?
Yes, in part because of environmental and attitudinal barriers that make it so people with disabilities have to rely on others. However, even in a fully-accessible, fully-inclusive world, some persons with disabilities would still need human support for daily tasks like eating or bathing, or for communication support like sign language interpretation.
What Does the Data Show on Unmet Needs?
Across seven low- and middle-income countries studied, over 45% of persons with disabilities have an unmet need for care and support. Cameroon and Laos show the widest gaps, at 61% and 69% of persons with disabilities with unmet care and support needs respectively. This lines up with what the extra-costs literature already shows: human care and support is consistently one of the largest cost categories for persons with disabilities and their families.
What About Persons with Disabilities Who Provide Care?
This is not an uncommon experience and should not be ignored by the care agenda. The brief discusses data and evidence from Colombia, Costa Rica, Chile, Mexico, Nicaragua and the United States. There is still much more to learn about caregivers with disabilities.
What Would an Integrated Care and Support System Look Like?
Some countries, including Chile, Uruguay, and Australia, have started formalizing care systems through dedicated administrative bodies that coordinate across programs rather than running them in isolation. The brief maps out the fuller ecosystem: disability-specific supports like personal assistance and sign language interpretation, broader care programs like respite care and caregiver training programs, and complementary policies like accessible infrastructure, inclusive education, and disability-responsive budgeting, all of which interact to reduce how much care and human support someone ultimately needs.
Why Is the Data on Care and Disability So Thin?
Because the instruments that could answer these questions mostly don’t include the relevant questions. Time use and care surveys rarely identify persons with disabilities or ask about their specific support needs, and rarely ask whether caregivers themselves have a disability. Disability surveys, in turn, rarely ask about care needs at all. Administrative records for care programs and disability certification systems also suffer from similar blind spots, and most rigorous evaluations of care interventions have focused only on the effects on women caregivers, leaving the cost-effectiveness of care policy for persons with disabilities largely unmeasured.
What Does CIP Recommend?
Six recommendations close the brief: promote accessibility and inclusion in wider care policies and programs, including by moving away from segregation and institutionalization; invest in initiatives that promote autonomy and allow persons with disabilities to control the care and support they receive; design care policy around rights for instance, by letting persons with disabilities manage their own cash-for-care benefits directly or getting rid of “incapacity-to-work” requirements in care programs; support both formal and informal care systems, including family caregivers; invest in better research and data collection linking care and disability; and involve persons with disabilities and their organizations directly in designing and monitoring care policy.
