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

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”

“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”

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

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