Supporting older adults with a learning disability and their ageing family carers: A family andcommunity support model

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Why did we start?Governments worldwide are being challenged to develop more age-appropriate, evidence-based,efficient and cost-effective systems to meet the needs of an ageing population. This includesolder adults with a learning disability. However, there have been few theoretically driven, robustly evaluated and coordinated models developed to support older adults with a learning disability and their ageing family carers to remain together within their family home. We carried out this study to develop a family and community support model.What did we do?This study involved 4 phases. Phase 1 comprised of focus groups with 87 adults with a learningdisability, 34 family carers and 60 staff working across learning disability services. Phase 2engaged in 16 1-1 interviews with senior managers from learning disability and mainstreamolder person services. Phases 1 & 2 explored the concepts of ageing, retirement and transitions.Phase 3 involved 97 1-1 interviews with adults with a learning disability and their carers toinvestigate health and social care service utilization and costs. Phase 4 used a roundtablemethodology bringing together a range of over 180 stakeholders to develop a family andcommunity support model.What answer did we get?· We found that the concepts of ‘retirement’ and ‘transitions’ were not clearly defined and therefore not proactively planned for by statutory service providers· All the participants agreed that retirement for older adults with a learning disability wasa ‘meaningless term’· Professional staff reported being restricted by the lack of age-appropriate community options· We found that those adults with a learning disability who resided in a residential facilitycost on average £64,417 per annum compared to £25,553 for those adults residing with their families· A number of practice and policy recommendations were identified and agreed by thestakeholders in order to develop a synchronized and enhanced family and communitysupport model: planning for the older person, supporting family carers, reshapingservices and inclusive communities.What should be done now?If this family and community support model is translated into practice, this model could be attractive to policy makers, service commissioners, learning disability services, mainstream older person services and community groups as this can clearly offer a low cost sustainable intervention. Using existing mainstream community social infra-structures rather than funding new retirement groups for this population, makes sense when promoting a human rightsempowerment and social inclusion agenda, and in this manner, improves health and well-beingof the service user.
Original languageEnglish
PublisherUnknown Publisher
Number of pages20
Publication statusAccepted/In press - 20 Oct 2017


  • intellectual disability
  • learning disability
  • family models
  • community models


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