FPLD logoParents of children with learning disabilities need more support to help them plan for future, including arranging care for their child when they are no longer there, the Foundation for People with Learning Disabilities (FPLD) has said.

The FPLD made this call at the launch of a new 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 families to make plans for the future. 

The number of adults with learning disabilities in England over the age of 65 is predicted to double in the next two decades. 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. Yet local authorities are not required to provide support for planning for the future to these families.   

Help planning for the future

In addition, the FPLD is calling on policy-makers, key stakeholders and the wider community to ensure families receive help to plan for the future. In particular it is calling on:

• Policy-makers to ensure policy and guidance on supporting people with learning disabilities and their families includes statements on the importance of planning for the future, and requirements for local services to have a clear system for how this will be done
• Local authorities to introduce planning for the future into the assessment and review processes and to organise workshops to help families identify practical options
• Practitioners in health and social care to engage in discussion with families to ensure plans are developed, and to recognise the importance of extended family, friendships, support networks and community connections when planning the future.

Christine Towers, research and service development manager at the FPLD, said: “Given the levels of anxiety felt by these families, it cannot be right that there is no requirement for local authorities to have a clear system for planning the future with families. This would not only help to reduce emotional stress but also give families the opportunity to shape a good life with their son or daughter.

“People with learning disabilities, their relatives and practitioners in health and social care should be working together to put things in place so everyone feels more confident about the future.”

As part of the campaign the FPLD is launching its own planning guide, designed with families and carers, to address this shortfall in support.

The Thinking Ahead planning guide has been developed from the experiences and views of people with learning disabilities and their families. Designed to provide families and practitioners with ideas to help them plan for the future, it is hoped that this new resource, together with the campaign, will bring changes to secure positive futures for people with learning disabilities.

The planning guide covers a range of topics to support families to plan, including financial planning, housing and support, building friendships and support networks, emergency planning and talking about difficult subjects like growing older and dying.