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Future planning for disability care

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For many elderly carers of a relative who has a learning or other disability, future planning is an issue. The population of older parents who have children with a learning disability is growing and many of their children are likely to outlive them.[1] In many cases the caring role can span up to seven decades, ending only with their death.[2][3] Governments and other service providers cannot ignore the pressing needs of this population and their parent and sibling carers.[4] In most countries, family carers provide inexpensive care for a person with a learning disability and other disabilities.[5] This trend is set to continue in England.[6] Demographic changes and the health needs of these two growing populations must be considered against government policy constraints and limited in-home and external care options in order to avoid a crisis.[7] The consequences of not supporting these family carers will lead to crisis management, increase in distress and care giving burdens, and increased spending on unsuitable crisis placements.[8] Housing and financial guidance are issues for caregivers.[8]

Future plan

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A future plan is a structured plan for a carer's relative who has a learning disability covering all aspects of well-being of that person. Clarifying and sharing the future plan for the relative is very important.[9] A clear written statement of the carer's future plan enables key people to understand the relative's perspective. It allows others to understand what is involved and provides new opportunities for the family to contribute to the plan. Plans are often not put in place as a result of denial by parents or carers of their own mortality and of the fact that they won't be able to help.[10][11][12] Carers have referred to a lack of support and guidance and are reluctant to ask for help.[13]

Housing

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United Kingdom

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Many family carers find it uncomfortable to explore out-of-home placements (housing) and support (or personal care) options for their relative with learning disabilities.[14] Research has shown that older parents or sibling carers want their relative to stay within their own home either with family or professional support, or move into a home of a sibling.[15][16] Residential care is a lesser preferred option.[17]

Housing and support in Northern Ireland can be either provided separately by different organisations[18] or offered together by the same organisation. Such services were provided by Health & Social Care Trusts,[19] although recently there are a number of alternative providers (i.e. Mencap, Positive Futures, PRAXIS, APEX and Trinity Housing). These offer people with learning disabilities different living and support arrangements.[20] The majority of people with learning disabilities in Northern Ireland and the United Kingdom live with their family.[21] Family carers have limited knowledge about the different housing options that are available.[22] Potential housing options in Northern Ireland include supported living, residential care, nursing home accommodation, adult placements and intentional community.[23]

Funding

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United Kingdom

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Disability Living Allowance (DLA) or Personal Independence Payment (PIP) is paid at different rates depending on how a disability affects someone.[24] Disability Living Allowance is in two parts: the care component and the mobility component.[24] Attendance Allowance is, in 2013, paid weekly at two different rates.[25] It depends on the level of help required. Extra Pension Credit[26] or Housing Benefit[27] is also available. Incapacity Benefit, which replaced Invalidity Benefit and has been replaced by Employment and Support Allowance, is money for people who cannot work because they are sick or disabled.[28] Independent Living Fund (ILF) provides money to help disabled people live an independent life in the community rather than in residential care.[29]

There are different methods to fund housing and support options (in Northern Ireland). Direct payments from social services are payments made to the family carer or the person with the learning disability to buy care services.[30] Direct payments give the family carer money instead of social care services. Carers have a greater choice and control over the life of a person with a learning disability, and are able to make decisions about how care is delivered.[31]

Emergency plans

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Emergency plans are for any period when the caregiver is unable to care for their charge for a short-period of time. Family carers want to continue caring for as long as possible and also want to engage in emergency and future planning.[32] Educational programmes have been developed to help ageing parents prepare future plans.[33] Without plans and supports in place, individuals with learning disabilities may be placed in inappropriate settings, or in unexpected care provided by other family members.[34]

See also

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References

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  1. ^ Mencap. "The Housing Timebomb".
  2. ^ Braddock D, Emerson E, Felce D, Stancliffe RJ (2001). "Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia". Mental Retardation and Developmental Disabilities Research Reviews. 7 (2). Mental Retardation and developmental Disabilities Research Reviews 7(2): 115–121. doi:10.1002/mrdd.1016. PMID 11389566.
  3. ^ Bigby, C (2004). Ageing with a lifelong disability. A guide to practice, program and policy issues for human service professionals.
  4. ^ Heller T, Caldwell J, Factor A (2007). "Aging family caregivers: Policies and practices". Mental Retardation and Developmental Disabilities Research Reviews. 13 (2): 136–142. doi:10.1002/mrdd.20138. PMID 17563896.
  5. ^ Hogg J; Lucchino R; Wang K; Janicki MP; Working Group (2000). Healthy ageing: Adults with intellectual disability: ageing and social policy. World Health Organisation.
  6. ^ Emerson E, Hatton C, Robertson J, et al. (2012). People with learning disabilities in England. Lancaster: improving health and lives. Learning disability observatory.
  7. ^ Barron S, McConkey R, Mulvany F (2006). "Family carers of adult persons with intellectual disabilities on the island of Ireland". Journal of Policy and Practice in Intellectual Disabilities. 3 (2): 87–94. doi:10.1111/j.1741-1130.2006.00059.x.
  8. ^ a b Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R (2012). "Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability". Journal of Intellectual Disabilities. 16 (3): 217–34. doi:10.1177/1744629512456465. PMID 22890999. S2CID 25624231.
  9. ^ Heller and Krammer (2006). Involvement of adult siblings of people with disabilities in future planning. Chicago: University of Illinois.
  10. ^ Bowey; McGlaughlin (2007). "Older carers with a learning disability confront the future. Issues and preferences in planning". British Journal of Social Work.
  11. ^ Chou; Lee; Linn; Kroger; Chang (2009). "Older and younger family carers of adults with an intellectual disability: Factors associated with future plans". Intellectual and Developmental Disabilities. 47 (4): 282–94. doi:10.1352/1934-9556-47.4.282. PMID 19650682.
  12. ^ McConkey; McConaghie; Barr; Roberts (2006). "Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities". Irish Journal of Psychological Medicine. 23 (4): 140–144. doi:10.1017/S0790966700009940. PMID 30290531. S2CID 52924089.
  13. ^ Prosser, H (1997). "The future care plans of older adults with intellectual disabilities living at home with family carers". Journal of Applied Research in Intellectual Disabilities. 10 (1): 15–32. doi:10.1111/j.1468-3148.1997.tb00002.x.
  14. ^ Bowey, Laura; McGlaughlin, Alex (January 2007). "Older carers of adults with a learning disability confront the future: issues and preferences in planning". The British Journal of Social Work. 37 (1). Oxford Journals: 39–54. doi:10.1093/bjsw/bcl052.
  15. ^ Barron, Steve; McConkey, Roy; Mulvany, Fiona (2006). "Family carers of adult persons with intellectual disabilities on the island of Ireland". Journal of Policy and Practice in Intellectual Disabilities. 3 (2): 87. doi:10.1111/j.1741-1130.2006.00059.x.
  16. ^ Bigby, Christine (2004). Ageing with a lifelong disability: a guide to practice, program, and policy issues for human services professionals. London New York: Jessica Kingsley. ISBN 9781843100775.
  17. ^ Taggart, Laurence (2012). Caring for carers - planning for the future.
  18. ^ Department of Health, Social Services and Public Safety: Northern Ireland. "Accommodation and Support Needs of People with a Learning Disability" (PDF). Archived from the original (PDF) on 12 December 2013. Retrieved 18 November 2013.
  19. ^ Department of Health and Social Services and Public Safety: Northern Ireland. "The Future of Adult Care and Support in Northern Ireland: A discussion document" (PDF). Archived from the original (PDF) on 19 October 2013. Retrieved 18 November 2013.
  20. ^ Chaplin, Eddie; Taggart, Laurence (2012). "England and Northern Ireland policy and law update relating to mental health and intellectual disability". Advances in Mental Health and Intellectual Disabilities. 6 (3): 144–150. doi:10.1108/20441281211227229.
  21. ^ King, Nigel; Harker, Maurice (2000). Living alone with others: Housing and support for people with learning disabilities. London: Mental Health Foundation. ISBN 978-0901944887.
  22. ^ McConkey, Roy; McConaghie, Jayne; Barr, Owen; Roberts, Paul (December 2006). "Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities". Irish Journal of Psychological Medicine. 23 (4): 140–144. doi:10.1017/S0790966700009940. PMID 30290531. S2CID 52924089.
  23. ^ Thinking Ahead: Planning Guide for Families. Foundation for People with Learning Disabilities. 2013.
  24. ^ a b www.nidirect.gov.uk. "Benefits and financial support - Disability". Retrieved 16 November 2013.
  25. ^ www.gov.uk. "Attendance Allowance". Retrieved 18 November 2013.
  26. ^ www.gov.uk. "Pension Credit". Retrieved 17 November 2013.
  27. ^ www.gov.uk. "Housing Benefit". Retrieved 1 November 2013.
  28. ^ www.gov.uk. "Employment and Support Allowance". Retrieved 17 November 2013.
  29. ^ www.gov.uk. "Independent Living Fund". Retrieved 17 November 2013.
  30. ^ www.gov.uk. "Direct Payments". Retrieved 18 November 2013.
  31. ^ Centre For Independent Living NI. "What Are Direct Payments?". Retrieved 17 November 2013.
  32. ^ McGrill, D (2005). Supporting older families - making a real difference. London: Mental health foundation.
  33. ^ Mount and Zwernik (1988). It's never to early, it's never to late: A booklet about personal future plans. Minnesota: Metropolitan Council.
  34. ^ Hiller, Caldwell and Factor (2005). Supporting ageing caregivers and adults with developmental disabilities and future planning. Rehabilitation and training centre on ageing with a developmental disability.
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  • Mencap UK charity offering support
  • Golden Lane Housing charity in England and Wales providing housing in partnership with Mencap
  • Sibs UK charity offering support
  • Positive Futures a Northern Ireland charity supporting people with an intellectual disability, autism and acquired brain injury.
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