Supporting Family Carers of People with Learning

Disabilities

Using the Policy and Resources Pack

Topics

1. What is a learning disability?

2. Policy Changes

3. Impact on Families

4. Supporting all family carers

• Black and minority ethnic communities

• Older families

• Supporting someone with complex needs

Topics (contd.)

5. Transitions

• Leaving children’s services

• Leaving home

6. Adult Life

• Personalisation

• A healthy life

• Employment

7. Useful websites

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.

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)

What is a Learning Disability?:

definition

• 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.

In Valuing People (2001) the Department of Health describes a learning disability as:

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

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

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.

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.’

Policy: Valuing People Now

• 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

Improvements from Valuing People:

Policy: Human Rights Act

• 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

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

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.

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

Families Having a Voice: VPN

• 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

‘Valuing People Now’ recognises that:

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

Families Having a Voice: resources

• 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

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

5a.Families from black and minority ethnic

communities• 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

Families from black and minority ethnic communities: resources

• 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.

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)

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)

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

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

Older Families: resources

• 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

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

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

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)

6. Transitions

• 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

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

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

Transition: Getting a Life• 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: resources

• 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

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

Housing: resources• 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 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

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

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.

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.

Person Centred Planning: resources

Families Leading Planningwww.familiesleadingplanning.co.uk

Foundation for People with Learning Disabilitieswww.learningdisabilities.org.uk

Circles Network www.circlesnetwork.org.uk

Useful websites and organisations:

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

A Healthy Life: resources

• 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/

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.

Employment: resources

• 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

Having a Say in the Development of Services

• 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

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.