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2016 Conference Presentation

Equity IrelandUnited Kingdom

5 September 2016

Intellectual disability, caring and role reversal

Zoe Hughes, Care Alliance Ireland


Introduction: For many years, people with intellectual disabilities were the recipients of long term care. Institutions across Great Britain and Ireland housed thousands of individuals who were unable to stay at home for many reasons. It is still the current assumption for many – including policy makers – that people with disabilities are still exclusively in receipt of care, and that that care is being provided by non-disabled family or friends, along with the support of health and social care professionals.

However, many services for people with intellectual disabilities are finding that those in receipt of their services are now in the position of providing care and support to their ageing parents, thanks to a variety of factors which will be outlined in this presentation. This change in circumstance is a cause for concern for those services who may feel ill-prepared to support people with intellectual disabilities in this new role.

Objectives of the presentation:

(1) Briefly overview the history of intellectual disability and long-term care

(2) Discuss recently developing demographic, social and policy changes which have an impact on people with intellectual disabilities and their families, including the reciprocal nature and mutuality of care

(3) Introduce key policy and service challenges regarding people with intellectual disabilities becoming identified Family Carers

(4) Suggest possible policy changes at national and service level which can address these challenges.

It is likely that this presentation will ask more questions of participants than answer them, and will likely challenge participants to challenge their underlying assumptions and understanding of what intellectual disability means within the world of unpaid care.

With changing demographics highlighting an increasing age profile of people with intellectual disabilities and society in general, and the increased pressure on formalised home care services, understanding the impacts of these on families where there is intellectual disability will be key to ensuring that those who wish to can stay at home for as long as possible.


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