When I'm Gone
75% of disabled people and their families have no long term support plan. Families need help to plan for the future.
Many disabled people are supported by their families. Family members play a key role in enabling and empowering them, becoming experts in their care. Few families have felt able to put plans in place for the future.
- 1.7 million disabled people are supported by their friends and families. 75% have no plan for the day that support is no longer available.
- 67% of carers have profound fears about what will happen to their relative when they are no longer able to provide care.
- One third of local authorities are unaware of how many disabled adults in their area are currently being cared for by family and friends at home.
- Only a quarter of councils routinely provide support to make contingency plans for future care.
What we're calling for
We believe that disabled people and their families should be able to have confidence that they will always be well supported. We’re calling on national and local government to:
- Create a duty to ensure that plans have been put in place
- Support families to make plans for the future
- Provide clear information about how the system works
- Ensure quality specialist services are available
- Provide enough funding for local areas
- Provide more support to help families now
What we're doing
Over the course of 2018, Sense will raise awareness of the issue locally and nationally to ensure that disabled people and their families get the support they need.
In February, we published our report, When I’m Gone. It explains the issue in detail, tells families’ personal stories and sets out our recommendations for change.
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A print-ready PDF version of our report into securing long-term care and support for disabled adults.
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A Word version of our report into securing long-term care and support for disabled adults, for improved accessibility.
We have also produced a toolkit called Decisions to make, steps to take. It is aimed at disabled people and their families, to guide them through the process of making choices about the future.
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Decisions to make, steps to take (PDF) (4587kb)
A print-ready PDF version of our guide to planning long-term care for disabled adults and their families.
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Decisions to make, steps to take (Word) (1765kb)
A Word version of our guide to planning long-term care for disabled adults and their families, for improved accessibility.
For an overview of the report and campaign, download our press release in accessible word format.
Sign our petition
Support our campaign by signing our petition to help families.
Donate
A gift to Sense, no matter how large or small, can make a real difference to the lives of people with complex communication needs.
