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
In Valuing People (2001) the Department of Health
describes a learning disability as:
• 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?:
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 ‘overarching aim of designing and delivering public services and
support, which meet people’s individual needs.’
Policy:
Valuing People Now
Improvements from Valuing People:
• 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:
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
‘Valuing People Now’ recognises that:
• 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:
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. Supporting
All 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, enewsletter 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 Support
in 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
Useful websites and organisations:
Families Leading Planning
www.familiesleadingplanning.co.uk
Foundation for People with Learning
Disabilities
www.learningdisabilities.org.uk
Circles Network
www.circlesnetwork.org.uk
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/ld
hn/
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.