Future planning for disability care
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. In many cases the caring role can span up to seven decades, ending only with their death. Governments and other service providers cannot ignore the pressing needs of this population and their parent and sibling carers. In most countries, family carers provide inexpensive care for a person with a learning disability and other disabilities. This trend is set to continue in England. 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. The consequences of not supporting these family carers will to lead to crisis management, increase in distress and care giving burdens, and increased spending on unsuitable crisis placements. Housing and financial guidance are issues for caregivers.
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. 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. Carers have referred to a lack of support and guidance and are reluctant to ask for help.
It is uncomfortable for family carers to explore out-of-home placements (housing) and support (or personal care) options for their relative with learning disabilities. 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. Residential care is a lesser preferred option.
Housing and support in Northern Ireland can be either provided separately by different organisations or offered together by the same organisation. Such services were provided by Health & Social Care Trusts, 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. The majority of people with learning disabilities in Northern Ireland and the United Kingdom live with their family. Family carers have limited knowledge about the different housing options that are available. Potential housing options in Northern Ireland include supported living, residential care, nursing home accommodation, adult placements and intentional community.
Disability Living Allowance (DLA) is paid at different rates depending on how a disability affects someone. Disability Living Allowance is in two parts: the care component and the mobility component. Attendance Allowance is, in 2013, paid weekly at two different rates. It depends on the level of help required. Extra Pension Credit or Housing Benefit is also available. Incapacity Benefit, which has been replaced by Employment and Support Allowance, is money for people who cannot work because they are sick or disabled. Independent Living Fund (ILF) provides money to help disabled people live an independent life in the community rather than in residential care.
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. 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.
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. Educational programmes have been developed to help ageing parents prepare future plans. 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.
- Mencap. "The Housing Timebomb".
- Braddock D, Emerson E, Felce D and 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). pp. 115–121.
- Bigby, C (2004). Ageing with a lifelong disability. A guide to practice, program and policy issues for human service professionals.
- Heller T, Caldwell J and Factor A, Tamar; Caldwell, Joe; Factor, Alan (2007). "Aging family caregivers: Policies and practices". Mental Retardation and Developmental Disabilities Research Reviees 13 (2): 136–142. doi:10.1002/mrdd.20138.
- Hogg J, Lucchino R, Wang K, Janicki MP and Working Group (2000). Healthy ageing: Adults with intellectual disability: ageing and social policy. World Health Organisation.
- Emerson E, Hatton C, Robertson J et al. (2012). People with learning disabilities in England. Lancaster: improving health and lives. Learning disability observatory.
- Barron S, McConkey R and Mulvany S, 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 Disability 3 (2): 87–94. doi:10.1111/j.1741-1130.2006.00059.x.
- Taggart L, Truesdale-Kennedy M, Ryan A and McConkey R, 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 a intellectual disability". Journal of intellectual disabilities 16 (3): 217–34. doi:10.1177/1744629512456465. PMID 22890999.
- Taggart L, Truesdale-Kennedy M, Ryan A and McConkey R, 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.
- Heller and Krammer (2006). Involvement of adult siblings of people with disabilities in future planning. Chicago: University of Illinois.
- Bowey and McGlaughlin (2007). "Older carers with a learning disability confront the future. Issues and preferences in planning". British journal of social work.
- Chou, Lee, Linn, Kroger and Chang (2009). "Older and younger family carers of adults with an intellectual disability: Factors associated with future plans". Intellectual and developmental disabilities.
- McConkey, McConaghie, Barr and Roberts (2006). "Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities". Irish journal of psychological medicine.
- 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.
- Bowey L and McGlaughlin A, L.; McGlaughlin, A. (2007). "Older carers of adults with a learning disability confront the future: issues and preferences in planning". British Journal of Social Work 37 (1): 39–54. doi:10.1093/bjsw/bcl052.
- Barron, Steve; McConkey and Mulvany (2006). "Family carers of adult persons with intellectual disabilities on the island of Ireland". Journal of policy and practice of intellectual disabillity 3 (2): 87. doi:10.1111/j.1741-1130.2006.00059.x.
- Bigby, C (2004). Ageing with a lifelong disability. A guide to practice, program and policy issues for human service professionals. London: Jessica Kingsley.
- Taggart, L (2012). Caring for carers - planning for the future.
- Department of Health, Social Services and Public Safety: Northern Ireland. "Accommodation and Supp ort Needs of People with a Learning Disability". Retrieved 18 November 2013.
- Department of Health and Social Services and Public Safety: Northern Ireland. "The Future of Adult Care and Support in Northern Ireland: A discussion document". Retrieved 18 November 2013.
- Chaplin E and Taggart L, Eddie; Taggart, Laurence (2012). "England and Northern Ireland policy and law update relating to mental health and intellectual disability". Advances in Mental in Intellectual Disabilities 6 (3): 144–150. doi:10.1108/20441281211227229.
- King and Harker (2000). Living alone with others: Housing and support for people with learning disabilities.
- McConkey R, McConaghie J, Barr O, Roberts P (2006). Irish Journal of Psychological Medicine 23 (4): 140–144.
- Thinking Ahead: Planning Guide for Families. Foundation for People with Learning Disabilities. 2013.
- www.nidirect.gov.uk. "Benefits and financial support - Disability". Retrieved 16 November 2013.
- www.gov.uk. "Attendance Allowance". Retrieved 18 November 2013.
- www.gov.uk. "Pension Credit". Retrieved 17 November 2013.
- www.gov.uk. "Housing Benefit". Retrieved 1 November 2013.
- www.gov.uk. "Employment and Support Allowance". Retrieved 17 November 2013.
- www.gov.uk. "Independent Living Fund". Retrieved 17 November 2013.
- www.gov.uk. "Direct Payments". Retrieved 18 November 2013.
- Centre For Independent Living NI. "What Are Direct Payments?". Retrieved 17 November 2013.
- McGrill, D (2005). Supporting older families - making a real difference. London: Mental health foundation.
- Mount and Zwernik (1988). It's never to early, it's never to late: A booklet about personal future plans. Minnesota: Metropolitan Council.
- 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.