Around the world, people with intellectual disabilities are being left behind by care systems, and their families are left to fill the gaps.

Families propping up these care systems are seen as selfless and resilient, but as family member in Canada consulted for this report said it best – “I hate being called resilient – because if the supports were in place I wouldn’t need to be called that.”

This report documents the experiences of people with intellectual disabilities and their families around the world accessing care and support systems, and their calls for what needs to change.

About the Report

This report is about how people with intellectual disabilities and their families interact with care and support mechanisms – both as recipients of care and as care providers.

It documents:

  • The current state of care and support in the context of ongoing care reforms
  • What care and support access for people with intellectual disabilities looks like around the world
  • The role families play filling gaps in broken systems
  • The impact of care and support gaps on both people with intellectual disabilities and their families
  • What inclusive care and support systems could look like
  • Recommendations from self-advocates and families for more inclusive care and support systems

The experiences of people with intellectual disabilities and their family members were collected through focus groups and survey data from 42 countries, and supplemented with case studies from Inclusion International member organisations.

This work was funded by the SAGE Fund.

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Key Findings

This report highlights number of gaps in care and support systems that are failing people with intellectual disabilities and their families:

  • Chronic underfunding and the use of outdated, segregated care models mean that formal support mechanisms around the world do not meet the needs of people with intellectual disabilities or their families.
  • Formal care and support mechanisms are fragmented, difficult to identify, underresourced, and inaccessible.
  • These gaps mean that formal support, semi-formal community support, and informal support as pillars of the system are out of balance, with the bulk of support provided by families without pay.
  • The lack of support for families in their role as primary carers creates risks for families, including burnout, isolation, and institutionalisation of people with intellectual disabilities.
  • People with intellectual disabilities are increasingly taking on care provider roles, but care and support systems are not responsive to their dual role as people requiring care and support and care providers.
  • People with intellectual disabilities and their families will continue to be put at risk until care systems transition towards affordable, appropriately resourced, and high-quality community-based services that promote choice and autonomy, take a whole family approach to meeting needs, and are rooted in self-advocate and family leadership.

Read the Executive Summary

Recommendations

This report provides recommendations for policymakers on how to deliver more inclusive care and support that works for people with intellectual disabilities and their families.

Recommendations for both immediate action and progressive realisation are provided for each of the 5 pillars of an inclusive care system:

  1. Based on choice and autonomy
  2. Provides high-quality community-based services
  3. Takes a whole family approach to meeting needs
  4. Affordable and appropriately resourced
  5. Rooted in self-advocate and family leadership.

Read the Recommendations

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