1. Securing long-term care and support for disabled adults
When I’m Gone
Securing long-term care and support for disabled adults

2. Setting the scene “I fear what will happen when I’m gone”
Families of disabled people with complex communication needs often provide their loved one with around the clock support
Although many disabled people with complex needs will live independently in residential services or in supported housing, many others remain living in the family home into adulthood
Family carers often continue to providing a high level of support for their loved ones as they themselves enter older age
“I fear what will happen when I’m gone”

3. “Worry keeps me awake at night
“Worry keeps me awake at night. I am very concerned that my son and daughter are going to outlive my capacity to care for them”

4. Research Methodology What we wanted to know Information sources
How many older people are caring for disabled adults?
How many family carers have made a plan for when they can no longer care?
What are the main barriers to planning for the future?
What is the impact of a lack of planning
What changes are needed to improve the situation?
What we wanted to know
120 online survey responses
Representative poll of 990 carers
40 in-depth interviews with families and disabled people
Freedom of Information (FOI) requests to Local Authorities in England
Information sources

5. Key Findings
We estimate that there are 1.7 million disabled adults being cared for by family and friends
Only 25% of families have a plan in place for what should happen if they’re no longer able to provide care and support
One third of councils do not know how many disabled people who live in their area rely on friends and family for care and support
67% of carers surveyed said they have profound fears about what will happen to their relative when they are no longer able to provide support