Supporting Family Carers of People with Learning Disabilities

1. Supporting Family Carers of People with Learning Disabilities Using the Policy and Resources Pack

2. Topics • What is a learning disability? • Policy Changes • Impact on Families • Supporting all family carers • Black and minority ethnic communities • Older families • Supporting someone with complex needs

3. Topics (contd.) 5. Transitions • Leaving children’s services • Leaving home 6. Adult Life • Personalisation • A healthy life • Employment 7. Useful websites

4. 1. What is a Learning Disability? • ‘People with learning disabilities’ is a term used to describe a very varied group of people • Some people have extremely high support needs and may need help with every aspect of their personal, health and social care • Others only need support in some areas of their life, for example, budgeting, filling in forms and cooking.

5. What is a Learning Disability?: terminology • ‘Learning disability’ is the term used by the Department of Health (DH) • In the past the term ‘mental handicap’ was used – older family carers sometimes still use this term • The term ‘learning difficulty’ is preferred by some self advocates (but can lead to confusion with specific learning difficulties, such as, dyslexia)

6. A significantly reduced ability to understand new or complex information, or to learn new skills A reduced ability to cope independently which starts before adulthood with lasting effects on development. What is a Learning Disability?:definition In Valuing People (2001) the Department of Health describes a learning disability as:

7. What is a Learning Disability?: diagnosis • There are well-known syndromes, such as Downs syndrome, Retts syndrome, Fragile X Syndrome • Some people do not have a specific diagnosis • People with an Autistic Spectrum Disorder may have a learning disability but not necessarily

8. 2. Policy Changes: introduction • Been huge change in way people with learning disabilities are supported in recent decades • In ’50s and ’60s parents persuaded that the best thing for them and their son or daughter was to put them in institutional care and get on with their life • After a series of hospital scandals realised that institutional care was not necessarily a safe option

9. Policy Changes: life in the community • Better Services for the Mentally Handicapped (1971) laid foundations for care in the community - aimed for half of 60,000 people in long stay hospitals to live in the community by 1990 • 30 years later, major new policy document in Valuing People:A new strategy for learning disability for the 21st century (2001) • Set out vision of life based on the principles of rights, independence, choice and inclusion - be able to play full part in communities rather than fitting into services. Person centred planning - lead to people expressing wishes and supported to lead kind of lives they wish.

10. Policy Changes: Valuing People to Valuing People Now • Progress to achieve aims of Valuing People was patchy: seen in report from National Director for Learning Disabilities, The Story So Far (2005) • Difficulties faced by people with learning disabilities and families highlighted in recent report of the Joint Committee for Human Rights, A Life Like Any Other? (2008): more liable to face social exclusion, isolation and poverty - efforts to improve lives had little impact for some • In 2009, a three year strategy, Valuing People Now, with strap line, ‘making it happen for everyone’ had ‘over-arching aim of designing and delivering public services and support, which meet people’s individual needs.’

11. Cross government plan agreed across Departments covering health, transport, work and pensions, Children, Schools and Families, Home Office, Communities and local government and Office for disability issue Has a delivery plan that sets out roles and responsibilities for making sure actions happen by agreed times Families are given a greater role in the delivery plan than in Valuing People and seen as key partners Policy: Valuing People Now Improvements from Valuing People:

12. Despite the Human Rights Act (1998) people with learning disabilities are sometimes denied their human rights The report, A Life Like Any Other? (2008) found that adults with learning disabilities ‘continue to experience a high level of prejudice and discrimination’ Valuing People Now is underpinned by the aim of people with learning disabilities achieving their human rights Policy: Human Rights Act

13. 3. Impact on Families • Family carers are usually parents but siblings and grandparents are sometimes main carer • A significant difference between family carers of people with learning disabilities and other carers is their experience of a lifetime of caring with different needs arising at different times. • This caring role throughout a person’s life means their lives are usually centred on the needs of the person with learning disabilities - given up many career and social opportunities

14. Impact on Families: services • Families often describe their experience as a ‘constant struggle’ to get support for their son or daughter’s needs and get support as family carers • Families’ experiences of professionals is very variable and some families end up with very low expectations of services • Over the years families find own ways of coping: people working in services do not always respect families for what they do -criticise family carers for being obstructive and over-protective.

15. Impact on Families: Having a Voice There is a growing awareness of the contribution family carers make to the lives of people with learning disabilities, reflected in • Valuing People Now • Guidance issued for Learning Disability Partnership Boards

16. Many people live at home with their family Supporting families is central to supporting people with learning disabilities to have choice and control More should be done to support families Families should be seen as expert partners: their role and expertise should be valued Families Having a Voice: VPN ‘Valuing People Now’ recognises that:

17. Families Having a Voice: Partnership Boards Good Partnership Boards (DH, 2009): • People with learning disabilities and family carers form at least 50% of Partnership Boards so they influence decision making • Should be given support to be active members • Annual report signed off by people with learning disabilities and families • Family carers representatives should be from range of ethnic communities and include carers of people with severe and complex needs

18. National Family Carer Network - links organisations and groups that support families that include adults with learning disabilities Leadership programmes such as Partners in Policy Making and ‘Making Change Happen’ reach out to carers to have a stronger voice and get involved in decision making Booklet on supporting Partnership Boards to implement the Carers Strategy gives a development tool to families and Boards Families Having a Voice: resources

19. 5. SupportingAll Family Carers The situation of some family carers may make it harder to get the support they need • Older families • Families from black and ethnic minority communities • Family carers supporting a relative with complex needs

20. Families from BME communities caring for a relative with learning disabilities can be doubly disadvantaged. The need for culturally sensitive services has been reiterated in Valuing People Now. The National Advisory Group on Learning Disabilities and Ethnicity (NAGLDE) advises government on changes that would help people with learning disabilities from black and minority ethnic groups - more information about NAGLDE’s work at www.learningdisabilities.org.uk 5a.Families from black and minority ethnic communities

21. This framework was put together to help Learning Disability Partnership Boards ensure their local services meet the needs of people with learning disabilities and their families from minority ethnic communities Appendix 3 is particularly useful as a list of reading, resources and good practice A useful resource for workers supporting families. Families from black and minority ethnic communities: resources

22. 5b. Older families • People with learning disabilities now living longer • Many are still living with their parent(s), who did not expect their child to out live them • 29,000 people with learning disabilities are living at home with family carers over 70 (Mencap, 2002) • Many of these families receive little or no support • 25% of older families are not known to statutory services (Valuing People, 2001)

23. Older families: issues • Main worry for families is what will happen when they are too old to care, have a crisis or when they die - highlights need to have plans in place for the future (including plans for emergencies) • Balance of care changes in some families - person with learning disabilities provides increasing level of care to elderly parent (known as mutual caring)

24. Older Families: planning for the future • Many of these parents had expected to outlive their son or daughter • Parents very worried about what will happen when they are not able to provide support • Statutory services not providing enough support to plan for the future

25. Older Families – mutual caring • Need to identify families where there is mutual caring • Person with learning disabilities may not be recognised as a carer - therefore not supported • Need to be able to access mainstream carers services, information and support as well as having some dedicated support where appropriate • May have a right to a carer’s assessment

26. Planning book for older family carers Planning book for people with learning disabilities DVD with stories about mutual caring Booklets to help workers support mutual caring Available from the Foundation for People with Learning Disabilities www.learningdisabilities.org.uk Older Families: resources

27. 5c. Families supporting a person with complex needs • These families provide very high levels of care and usually are most in need of additional support • Often in touch with a range of professionals and agencies - this can lead to loss of privacy and exhaustion from attending appointments, etc. • Sometimes excluded from additional support because services say they cannot support someone with complex needs or because families cannot take time away from caring to get support for themselves • Family carers struggle to maintain their employment and the rest of family life

28. Families supporting a person with complex needs: terminology There are different ways in which someone’s support needs can be described as complex, for example: • Profound and multiple learning disabilities or profound intellectual and learning disabilities • Challenging behaviour • Complex health needs

29. Families supporting a person with complex needs • People with complex needs can have a profound intellectual disability; impairments of vision, hearing and movement; express themselves through non-verbal means; additional health needs e.g. epilepsy; and problems of challenging behaviour e.g. self-injury • Useful websites www.thecbf.org.uk (Challenging Behaviour Foundation); www.pmldnetwork.org (Profound and Multiple Learning Disabilities Network)

30. Family carers find periods of transition difficult. The main periods of transition that affect families are Leaving children’s services Moving from the family home 6. Transitions

31. 6a. Transition: leaving children’s services • ‘Transition’ is used to describe the move from children’s services to adult services that can involve: • leaving school • transferring from children and family services to adult social care services • transferring from paediatric services to adult health services • Been recognised for many years that this period of change is not always well co-ordinated by services and that planning is often poor or does not start soon enough

32. Transition: the process • In Year 9 (aged 14+) young person with a statement of educational needs will have a review, organised by the school • Should involve family, friends and professionals from different agencies, including health • Meeting is about planning for their future and should lead to a Transition Plan • Plan should be person centred - young person is the focus with choice and control over their future

33. Reality of transition is still unsatisfactory for many young people and their families Led to government funding a pilot transition programme, Getting a Life to ensure young people with severe learning disabilities leave education and go on to employment and achieve full lives. Transition: Getting a Life

34. Transition Information Network provides information through the a website, magazines, e-newsletter and seminars. www.transitioninfonetwork.org.uk Foundation for People with Learning Disabilities has planning books for young people and families www.learningdisabilities.org.uk Transition: resources

35. 6b.Transition: leaving the family home • 50% of people with learning disabilities live in the family home, 30% in residential care and 15% rent their own home. Small number own or part own their home • Valuing People Now - people should have the opportunity to make an informed choice about where they live and who with • Many family carers provide regular and substantial support after their relative moves • Families worry about quality of support, how much input they are required or able to give (particularly in non-24 hour supported living options) and who will monitor when they are no longer able to

36. Families need access to good information, advice and practical support to understand Housing and support options (how it all works) What is available locally Housing: resources • Housing Options has a website, helpline and information to understand how it works www.housingoptions.org.uk • Families also need local workshops and individual support to explore options during, and after, a move

37. 7. Getting the Right Supportin Adult Life • Many changes are taking place with the way people with learning disabilities are supported in adult life - 3 key areas are • Personalisation • Health • Employment

38. 7a.Getting the right support: personalisation • Personalisation is government’s key message for delivering support - set out in Putting People First (2007) • Personalisation means people having choice and control over their lives through person centred planning and self directed support • Not a new approach in supporting people with learning disabilities - person centred planning (PCP) was at the heart of Valuing People.

39. Person Centred Planning • Person centred planning means each person should be at the centre of planning about their life - with support from family, friends and others who know them well • Person centred planning covers all aspects of a person’s life - health, education, employment, leisure, community activities and social care • Circles of Support bring people together to plan with a person and implement change - also connect people to their community as alternative to relying on services for support.

40. Families Leading Planningwww.familiesleadingplanning.co.uk Foundation for People with Learning Disabilitieswww.learningdisabilities.org.uk Circles Network www.circlesnetwork.org.uk Person Centred Planning: resources • Useful websites and organisations:

41. 7b.Getting the Right Support: Healthy Life • People with learning disabilities have same health needs as everyone - but can be at greater risk of health problems • Do not always get treatment they need – highlighted by Mencap report Death by Indifference (2007) leading to Government Inquiry and report Healthcare for All (2008) • No of proposals: • GPs to give annual health checks and receive training to work better with people with learning disabilities • Acute hospital care to be improved – recommends a learning disability acute hospital liaison nurse • Family carers to be seen as partners in care • Health needs of family carers to be recognised

42. Easy read information useful for people with learning disabilities and families on many health topics at www.easyhealth.org.uk DVD about Health Action Planning and people with learning disabilities looking after their health www.myhealthdvd.co.uk UK Health and Learning Disability Network - information and answers to queries www.learningdisabilities.org.uk/ldhn/ A Healthy Life: resources

43. 7c. Getting the Right Support: employment • Estimated that only 10% of people with learning disabilities known to services have a job - likely to be part-time • Specific aim is to increase number of people with learning disabilities in the workforce • Some family carers (especially younger ones) keen for their relative to have a job - others are sceptical, particularly if their relative has high support needs.

44. Valuing Employment Now: real jobs for people with learning disabilities – goal is to significantly increase number of people with learning disabilities in employment by 2025 includes action to raise expectations throughout the system that all people with learning disabilities can and should have the chance to work: from birth and early years through education, among health and social care staff, local authorities, employment agencies, employers, and people with learning disabilities themselves and their families Employment: resources

45. National Valuing Families Forum is made up of representatives from regional forums - meets regularly and influences national policy Leadership programmes such as Partners in Policy Making and ‘Making Change Happen’ reach out to carers to have a stronger voice and get involved in decision making Booklet on supporting Partnership Boards to implement the Carers Strategy gives development tool to families Having a Say in the Development of Services

46. Useful Websites • Valuing People www.valuingpeople.gov.uk • Mencap (including the Learning Disability Helpline) www.mencap.org.uk • National Family Carers Network www.familycarers.org.uk • Foundation for People with Learning Disabilities www.learningdisabilities.org.uk • As well as www.carers.org and www.crossroads.org.uk.