Ageing Adults with Intellectual Disabilities: Selfadvocates’ and Family Members’ Perspectives about the Future, 2013

Click here or on the pdf file to read the full report or an excerpt below.

Although not representative of all ageing adults with intellectual disabilities and their family members,
the findings from this research highlight the complex interaction of systems (intra- and interpersonal,
community-level services, governmental agencies) in the awareness and identification of issues related
to future planning. Both ageing self-advocate and family member participants expressed concern about
one another’s wellbeing in the future. These worries were rooted in an uncertainty about supports and
lack of transparent, proactive, and intentional planning. It seems that these future fears and a lack of
formal guidance serves to immobilise families; thus impeding planning and, subsequently, resulting in
crisis management efforts. Such efforts have the potential to place stress and strain on the family, ageing
adults, and the wider system that is not prepared for the increasing numbers of this ageing population.
As the life expectancy for individuals with intellectual disabilities increases, support and
planning at the policy and systems level needs to flexibly respond to this growing demographic. It is
likely that the uncertainty identified by participants in this study parallels that of the broader systemic
authority as they are faced with uncharted territory. Systems and community-based supports must work
with the priorities of ageing adults and their family members to ensure adequate future planning and
facilitate quality of life.
A variety of priorities have been clearly articulated by participants in this study. It is clear that
many ageing adults desire to be active, engaged members of the community as they pursue leisure and
work interests into old age. Family members want to know that their ageing adult will have a
comfortable and safe place to live, financial security, and continued opportunities for self-determination
and choice. Listening to the voices of those individuals who face the reality of getting older in systems
not designed to support them is fundamental to advancing quality service provision, and quality of life,
for ageing adults with intellectual disabilities and their families.”

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