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]

Contents

Future plan

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

United Kingdom

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

United Kingdom

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

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

Related Research Articles

Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.

<span class="mw-page-title-main">Mencap</span> British charity advocating for people with learning disabilities

The Royal Mencap Society is a charity based in the United Kingdom that works with people with learning disabilities. Its Charity Number is 222377.

<span class="mw-page-title-main">Long-term care</span> Services for the elderly or those with chronic illness or disability

Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.

"The normalization principle means making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society." Normalization is a rigorous theory of human services that can be applied to disability services. Normalization theory arose in the early 1970s, towards the end of the institutionalisation period in the US; it is one of the strongest and long lasting integration theories for people with severe disabilities.

<span class="mw-page-title-main">Deinstitutionalisation</span> Replacement of psychiatric hospitals

Deinstitutionalisation is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.

Supported living or supportive living refers to a range of services and community living arrangements (CLAs) designed with individuals with disabilities and their families to support disabled citizens to attain or retain their independence or interdependence in their local communities. Supported living is recorded in the history of the NASDDDS, celebrating its 50th anniversary. Community Supported Living Arrangements (CSLA) was a landmark federal multi-state demonstration to illustrate the federal role in community living in the US. Supported living is considered a core service or program of community living programs funded through federal-state-local partnerships.

A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.

Respite care is planned or emergency temporary care provided to caregivers of a child or adult.

Texas state supported living centers are a collection of residential facilities run by the state for people with intellectual disabilities in Texas, United States. The schools, operated by the Texas Health and Human Services Commission operate under the Federal Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) program.

Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.

<span class="mw-page-title-main">Intellectual disability</span> Generalized neurodevelopmental disorder

Intellectual disability (ID), also known as general learning disability and mental retardation, is a generalized neurodevelopmental disorder characterized by significant impairment in intellectual and adaptive functioning that is first apparent during childhood. Children with intellectual disabilities typically have an intelligence quotient (IQ) below 70 and deficits in at least two adaptive behaviors that affect everyday, general living. According to the DSM-5, intellectual functions include reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience. Deficits in these functions must be confirmed by clinical evaluation and individualized standard IQ testing. On the other hand, adaptive behaviors include the social, developmental, and practical skills people learn to perform tasks in their everyday lives. Deficits in adaptive functioning often compromises an individual's independence and ability to meet their social responsibility.

Disability abuse is when a person with a disability is abused physically, financially, sexually and/or psychologically due to the person having a disability. This type of abuse has also been considered a hate crime. The abuse is not limited to those who are visibly disabled or physically deformed, but also includes those with learning, intellectual and developmental disabilities or mental illnesses.

The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger social movement. The Family Movement advocates for the economic and social rights of family members with a disability. Key elements include: social inclusion; active participation; a life of meaning; safety; economic security; accessibility and self-determination. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship to the current supported decision-making; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination.

Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID), formerly known as Intermediate Care Facilities for Mental Retardation (ICF/MR), is an American Medicaid-funded institutional long-term support and service (LTSS) for people with intellectual disabilities or related conditions. Section 1905(d) of the Social Security Act enacted benefits and made funding available for "institutions" for individuals with intellectual or related conditions. According to federal law 42 CFR § 440.150 the purpose of ICD/IIDs is to "furnish health or rehabilitative services to persons with Intellectual Disability or persons with related conditions."

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Family support is the support of families with a member with a disability, which may include a child, an adult, or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families, and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services are currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability groups, administrating agencies, and even, regulatory and legislative intent.

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<span class="mw-page-title-main">President's Committee for People with Intellectual Disabilities</span>

The President's Committee for People with Intellectual Disabilities (PCPID) is an advisory body that provides assistance to the President of the United States and the Secretary of Health and Human Services on public policy issues related to intellectual disability. It was started as a blue-ribbon panel by John F. Kennedy in 1961, and later reorganized through executive order into an official panel by Lyndon B. Johnson in 1966, with the goal of ensuring the right to a "decent, dignified place in society". Originally known as the President's Committee on Mental Retardation, it was eventually renamed in 2003 by George W. Bush over concerns regarding negative labelling. It was established through the work of Eunice Kennedy Shriver while serving as the head of the Joseph P. Kennedy Jr. Foundation.

References

  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. 1 2 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. 1 2 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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