During the recent House of Lords debate on the Care Bill, Baroness Rosalie Wilkins raised the closure of the Independent Living Fund and asked three very important questions of the Government:
What steps will the Department of Health and the DWP jointly take to ensure that funding is available after 2015?
Will the Minister assure the House that ILF users will not be forced into residential care or confined within their own home with only ‘life and limb’ care following the transfer of funding responsibilities to local authorities?
If this Care Bill is to fulfil its principle of well-being, what level of funding do the Government believe is necessary to ensure that we do not return to the days when disabled people with high support needs had no opportunity to live independently?
Unfortunately, but not surprisingly, this only elicited a ‘non-answer’ from the Government’s Earl Howe:
Following the closure of that fund, we have committed to passing funding to local authorities in order to allow for ILF recipients to be brought into the mainstream care and support system. Final details will be announced as part of the spending round on 26 June.
These weasel words are no fig leaf for the outrage that the closure of the ILF is likely to inflict on disabled people with the highest support needs.
Here’s just one story (there are many others on the DPAC website, as well as a petition).
Jean Willson is the mother of Victoria, who has very high support needs because of physical impairment, learning disabilities and complex health conditions. Twenty-three years ago Victoria moved into a flat which she shares with another young woman with similarly high support needs. These two young women were pioneers – in previous times they would have been consigned to institutional care and would have been lucky to have survived much beyond early adulthood.
Jean tells of how the ILF assessor “changed Victoria’s life; he saw immediately what she needed, he helped us through the minefield of funding and benefits and changed her life and our life as a family”. ILF funding means that she has one-to-one support throughout the day and evening but also has 6 hours when there are two staff to help with moving and lifting, with her personal care, with her uncontrolled epilepsy and other health conditions.
For the last 23 years, Victoria and her flatmate have lived safely in their own home.
But Jean fears that even a hospital wouldn’t be able to meet Victoria’s needs and that she will die if her level of support is reduced.
All the messages coming from government and from local authorities alike confirm that people currently receiving ILF funding will receive less support once responsibility is transferred to local authorities (see my previous blogpost).
Jean says: “I think things will be OK for the first year of transition, because the funding is transferred for that first year. But after that the funding is not guaranteed, so Victoria will be re-assessed by the local authority and my fear is that they will decide she doesn’t need two-to-one care at all – it’ll be a resource-driven assessment, her quality of life will diminish overnight and her life will be put at risk. She would die – and she would die very quickly. I’m not being over-dramatic. It’s only because she’s had expert care and it’s been a joint partnership with her family, that she’s survived and had a good quality of life”.
In March this year, Guardian columnist Zoe Williams, asked the government a question we would all like an answer to – “What's your plan for these people whose lives we apparently can't afford?”