Disability‑Inclusive Care and Support: What Are We Learning?
IDDC LS², 14 April 2026
As countries invest more heavily in care systems, a critical question is emerging: will these systems advance the rights, choice, and autonomy of persons with disabilities—or reinforce outdated, institutional models of care? This question framed the IDDC Learning Square Session (IDDC LS²) on Disability‑Inclusive Care and Support, which brought together insights from the OHCHR‑EQUIP project and 6-country participatory research from the International Centre for the Advancement of Community Based Rehabilitation at Queen’s University.
Care agendas and disability rights: closing the gap
Facundo Chávez Peña (OHCHR) introduced the global CARE agenda, rooted in feminist advocacy on unpaid care work and linked to the SDGs. While momentum around care systems has grown since COVID‑19, OHCHR has identified a key risk: many national care policies initially overlooked disability‑rights perspectives, particularly the right to live independently and be included in the community under Article 19 of the CRPD.
In response, OHCHR developed practical tools to bridge women’s rights and disability movements, including:
- A country assessment tool aligned with the CRPD
- A training package (expected mid‑2026) to build shared language and collaboration
- A six‑paper foundational papers and a checklist outlining state obligations, user agency, business‑model risks, due diligence, remedies, and a “SMART mix” of mandatory and voluntary measures
A central message was the need to shift from a caregiver‑centred only model to a care and support paradigm that prioritises choice, control, and participation.
Understanding risks in care and support services
OHCHR’s analytical work applies the CRPD alongside the UN Guiding Principles on Business and Human Rights to map care and support services. Using a traffic‑light framework, services are assessed as:
- Red: high risk to rights (often institutional or segregating models)
- Yellow: mixed or transitional approaches
- Green: services aligned with CRPD outcomes, such as personal assistance or sign interpretation
The analysis highlights how state regulation, financing, and purchasing power shape service providers’ behaviour—and how expanding funding to institutional responses under the increased demand created by the care agenda now could create much larger, harder‑to‑reverse problems later.
What communities show us about support in practice
Heather Aldersey and Afolasade Fakolade from Queen’s University shared findings from a participatory, multi‑country study spanning Bangladesh, Ethiopia, Guatemala, Mozambique, the UK, and the US, based on 195 interviews with people with disabilities, families, staff, and community members.
The research compared formal supports (paid or state services) and natural supports (family, peer, and community‑based assistance). Across contexts, one message was consistent: people and families need both, and the mix changes over time.
Case examples highlighted:
- The power of peer support and lived experience (UK, Bangladesh)
- Cooperative and member‑led models that strengthen choice and inclusion (US)
- Community‑based rehabilitation approaches that reduce stigma and build natural supports, using culturally relevant practices like neighbourhood coffee ceremonies (Ethiopia)
- The sustainability challenges faced by partnerships reliant on short‑term or external funding
Caregivers across countries expressed similar concerns about exhaustion, constant advocacy demands, and uncertainty about the future when primary caregivers age and cannot provide the same level of care, or when they pass away.
Key takeaways
Across both presentations, several clear messages emerged:
- Care systems must be designed with persons with disabilities, not for them
- Expanding care without a rights‑based framework risks reinforcing institutionalisation
- Natural supports are valuable but cannot substitute for state responsibility
- Participation, user agency, flexibility, and accountability must be built into policy, regulation, and funding
As investment in care systems accelerates globally, this learning space underscored a crucial opportunity: to shape care and support systems now so they uphold rights, dignity, and inclusion—rather than trying to reform harmful models later.