danpartonThis blog, written by Dan Parton, first appeared on our sister site Learning Disability Today

For parents of children with learning disabilities, planning for what happens when they are no longer there to care for their offspring may seem like a scary proposition, but it has to be done – and many will need support to do this.

For many parents of a child with learning disabilities, caring for them is a lifelong commitment. But what happens when the parents die or if their health fails and they can no longer care for their child? Who will care for them and how will it be paid for – especially if they do not receive state support?

These are troubling questions for parents and children alike, but it is a situation facing an increasing number. The number of adults with learning disabilities in England over the age of 65 is predicted to double in the next two decades, according to the Foundation for People with Learning Disabilities (FPLD). With 60% living with their families, and a third of these with a family carer over 70, the need to plan for a future without parental care is becoming increasingly important.

To this end, the FPLD has launched a campaign, Thinking Ahead, which aims to highlight the distress felt by parents over who will care for their son or daughter when they die and the need for national and local policy to support for families to make plans for the future.

Currently, local authorities are not required to provide support for planning for the future, so it is often left to the parents themselves to sort out the arrangements.

Difficult arrangements

And they are not easy arrangements to make. For instance, some of the common issues that might need to be considered include:

  • Putting a care plan in place
  • Establishing how the plans will be paid for
  • Deciding who will manage their child’s financial affairs (if they are unable to)
  • Considering whether any inheritance will affect the child’s state benefits
  • Deciding whether they will stay in the family home.

The legal and financial considerations behind these issues are potentially huge so having support would be welcomed by many and could cut out a lot of stress for parents and their child.
While it seems that more parents are thinking about the future – John-Paul Dennis, partner and head of private client at law firm Kirwans, said the firm is receiving more enquiries from concerned parents – but not all have the means to access commercial law firms. So a requirement for local authorities to have a clear system for planning the future with families would help to alleviate at least some of the stress of planning for the future – as well as preventing many problems once the parent has gone.