Alison Giraud-Saunders, Consultant at the Foundation for People with Learning Disabilities, says:
"Everyone wants the best care for their relatives, but the reality of securing funding for a family member with learning disabilities is not always a straightforward one. Responsibility for care and support is shared between local government and the NHS and it can be a daunting prospect to make sense of all the different rules and regulations that govern each source of funding.
That's why this week we published a clear and concise information booklet about one of the funding packages available, NHS Continuing Healthcare (NHS CHC), to help the families of people with learning disabilities to understand how it works and whether it might help to get the appropriate care for their relative.
NHS CHC is funding for a complete package of health and social care outside hospital that is paid for by the NHS, for people who have been assessed to have a ‘primary health need’. Like many sources of funding, NHS CHC has very complicated rules and NHS staff responsible for CHC funding aren't always well informed about people with learning disabilities or personalised support.
This is where our booklet will make the difference. It's an easy to follow guide that outlines the whole application process, paying particular attention to how family members can best be involved in the proceedings. It details the two-tiered assessment stage, explains what happens next and what options are available if funding is not awarded.
The booklet addresses some of the concerns that family members might have, such as the effect NHS CHC has on other services and benefits and how to appeal if they are unhappy with the process or results. In addition to this it has a full list of useful resources at the end of the booklet.
This all comes at a tough time for people with learning disabilities and their families, with the unstable economic situation and government cuts causing added financial and emotional pressures. This is a widespread issue - currently there are around 974,000 adults with a learning disability in England, of whom 145,000 adults have ‘severe’ or ‘profound’ learning disabilities. It is also estimated that 60% of adults with learning disabilities live with their families and get most of their support and care from family members.
It is more important than ever that families are well informed about the sources of support available, and we hope this booklet will be a useful guide to one of the funding packages currently offered.
Download our booklet What do I need to know about NHS Continuing Healthcare here