In April this year, the implementation of the Care Act brought promise of an improved approach to supporting adults with care and support needs. It also strengthens the rights of carers, recognising them as equal partners in care and support.

So, how will this translate into better practice for carers of people with learning disabilities? Rhianon Gale, Manager of the Family Carer Support Service at Hft, a national charity supporting people with learning disabilities and their families, believes that care and support will improve under the Care Act, but only if professionals improve their ‘family carer awareness’ and recognise the impact of a lifelong caring role.

Over the years, the term ‘family carer’ has evolved to describe family and friends caring for and about 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, advocating to ensuring their child accesses education support, health services, and day-to-day facilities like shops and cinemas. Whilst hoping to meet the needs of other family members, 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.

Demands on family carers

Supporting an adult with a learning disability can become more demanding for family carers, particularly as a family grows older together. 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.

Our ageing population poses many challenges for our health and social care services. Advances in medical technology and statistics suggest the number of older people will continue to rise. Hft’s Family Carer Support Service (FCSS) supports family carers in England of all ages; it is unsurprising that the number of older carers, of 65 plus, is increasing along with their relatives with learning disabilities.

The impact of a lifelong caring role can be significant. 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 rights for carers, a focus on ‘wellbeing’ and the preventative approach in the Care Act will enable professionals to provide appropriate, timely support by recognising the lifelong impact of learning disabilities on individuals and family carers.

Planning for the future

Putting into place a plan for the future can make dramatic differences to the lives of family carers and the people they support. A future plan can reduce anxieties about what otherwise would have been an uncertain future. A long-term approach to developing a Care and Support plan built around the individual and the family carer can reduce the risk of reaching crisis point.

Take as an example Tom, a young adult in his twenties living at home with his mum. When he is on term breaks from his college course, he gets angry and frustrated because he is bored and has no one of his age to talk to. He is at risk of getting lost if he goes out alone. His mum works from home and is limited in what she can do to keep him busy during college breaks. With a direct payment for him to access a few hours support a day he is enabled to visit friends, develop travel skills and access facilities without his mum’s help. This prevents a crisis situation where Tom’s behaviour becomes challenging and emergency support, such as NHS services, are needed.

The FCSS often talks to families about where they see their relative in the future and what their relative wants to achieve in life, whilst considering the aspirations and needs of the family carer. We help them to develop future and emergency plans as well as supporting them to exercise their rights to be recognised as key partners in supporting their relative with a learning disability and to access the support they need now.


Family carers are rarely considered as ‘experts’ with regards to their relative, despite holding a wealth of knowledge and history, and having assumed multiple roles by the time their relative reaches adulthood: advocate, coordinator, commissioner, negotiator, counsellor (the list is not exhaustive!). The majority of family carers struggle to keep up-to-date with health and social care law and policy developments as they are too busy supporting their relative and living their lives!

The FCSS believes in providing family carers with the knowledge about their rights in law and policy, enabling them to develop the confidence to make themselves heard by professionals and challenge when their relatives are not being appropriately supported.

FCSS’s dedicated team gives telephone support, designs and delivers workshops and develops resources specifically targeted to provide family carers with the go-to information and support that they need. Most importantly, it gives them the confidence to challenge support needs with the reassurance that the Care Act now reinforces this.

Many people with learning disabilities and their families are understood by the professionals who take a personalised approach to build support around them. However thousands of people struggle to access even the basic levels of support they are entitled to. It is hoped that the new duties in the Care Act will recognise the value that family carers bring to supporting people with learning disabilities, involving them as equal partners in care and support and ensuring their own needs are recognised and properly supported.

Call the FCSS on: (Freephone) 0808 801 0448

FCSS will be running workshops on the Care Act. To find out more visit:

(With thanks to Rhianon Gale, Manager of the Family Carer Support Service at Hft.)