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  The implementation of the Care Act a year ago brought promise of an improved approach to supporting adults with care and support needs and their family carers.
It strengthens the legal rights of adults to access the right support for them as an individual.
For the first time in law, carers are recognised as equal partners in care and support.
How has this new law translated into real life for family carers and people with learning disabilities?
Rhianon Gale, Manager of the Family Carer Support Service (FCSS) at Hft, a national charity supporting people with learning disabilities and their families, believes the new law is a good foundation in recognising that each person should be supported in a way that is right for them, and gives stronger rights to individuals and their families to challenge professionals’ decisions when things go wrong. However, financial pressures on local authority budgets may result in restrictions to personalised intentions.
Practice doesn’t change overnight but if people know what their rights are, they can speak up and challenge when things go wrong.
A lifelong caring role
The term ‘family carer’ has evolved over the years to describe family and friends caring for an adult with a learning disability. It is important to recognise this ‘category’ of carers as a unique group, whose lifelong caring responsibilities bring particular rewards and challenges. The experience of a family carer, for example a parent or sibling, is quite different to that of someone who becomes a carer for their elderly parent later in life.
Parent carers can spend years of their child’s life
seeking a diagnosis, coming to terms and
understanding what that diagnosis means for
their child, and then working hard to ensure
their child is able to access education,
health services, and day­to­day facilities
like shops and cinemas. Along with
all their other commitments they support their disabled
child on a daily basis with communication, behaviours, personal care and supporting and encouraging them to develop interests and aspirations in life.
This doesn’t stop in adulthood and these experiences and the impact of the input must not be lost or forgotten when an adult with a learning disability accesses formal support.
Family carers often feel their expertise ­ the detailed knowledge and history they hold about their relative ­ is not listened to by professionals, resulting in unnecessary mistakes or incorrect decisions that lead to the wrong type of (or reduced) support. Family carers are likely to have had more difficulties getting, or staying in a job, with inevitable effects on their finances. Family carers are known to financially support their relative, whether directly by paying for items or activities, or indirectly, through higher than average gas or electricity bills for heating. We also know that family carers are more likely to develop physical and mental health needs beyond those experienced by most of us as we age.
As a charity, Hft understands the significant impact a lifelong caring role can have on people. Failing health, and a decline in their ability to continue to support a relative with learning disabilities, is a serious concern particularly for older family carers. This is exacerbated by worry about the provision of services for the people they are caring for.
Stronger legal rights
Since the implementation of the Care Act, FCSS is aware through the support we provide, and national and local news headlines, that poor implementation of the new law across England is having a devastating impact on individuals and their families, who lack the quality support they need. When there is a reduction to a person’s support, or a change to their financial contribution towards care and support, family carers often find themselves creating a ‘buffer’ to reduce the impact on the person.
The Care Act raises the profile of family carers, recognising the expertise and value they bring to supporting their relative to live a good life and as a result they should be recognised as such and treated accordingly by professionals working with them and the people they support.>
Family Carer Support Service
Hft talks in depth about the Care Act: How has the Care Act translated into real life for family carers and people with learning disabilities?
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