National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
Setting a National Agenda for Aging Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.
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Stuart Wark, Miranda Canon-Vanry, Peta Ryan, Rafat Hussain, Marie Knox, Meaghan Edwards, Marie Parmenter, Trevor Parmenter, Matthew Janicki, andChez Leggatt-Cook
British Journal of Learning Disabilities: Special Issue: Aging and People with Learning Disabilities
Volume 43, Issue 4, Pages 293–301
- This paper is about older people with learning disabilities who live in the country in Australia.
- We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder.
- These people said that they were well supported by the local community and particularly their doctors.
- However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like.
Background: Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia.
Materials and Methods:
This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas.
Results: It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation.
Conclusion: An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals’ needs.