"What's your plan for these people whose lives we apparently can't afford?”

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?”

Is there a silver lining to the High Court decision on the Independent Living Fund?

Following an application for Judicial Review of the decision to close the Independent Living Fund, the High Court has ruled that the Government carried out an adequate consultation and had not breached the public sector equality duty.  The applicants are appealing – Disabled People Against the Cuts has full information about all of this here.

The High Court judgement does appear, however, to lay down a marker to the government as to under what circumstances it would be in danger of failing to meet its Public Sector Equality Duty.  The judge recognised that ILF users will be “significantly disadvantaged” if they have to rely solely on existing local authority provision. He went further and said that something more is expected of government in order to protect ILF users and, in particular, to fulfill the government’s obligations under the UN Convention of the Rights of Disabled People.

He stated that if the forthcoming legislation on social care, or the Code of Guidance on transferring responsibility for ILF users to local authorities, “does not arrive in time or turns out to be too anaemic in content to enable the Convention principles to be brought to bear in individual cases”, then there would need to be re-consideration as to whether the Public Sector Equality Duty had been fulfilled.  He also said that this would also be the case “if the level of Treasury funding for disabled people generally or for this class of ILF users in transition back to [local authority provision] in particular is so austere as to leave no option but to reverse progress already achieved in independent living”.

While it is disappointing that the application relating to closure of the ILF was refused, the judgement does seem to contain a clear warning to government that it could be subject to successful legal challenge if there is evidence of a reversal of the progress achieved in recent years towards independent living for disabled people.

Before the ILF was closed to new applicants in December 2010, its funding was available to disabled people (between the ages of 16 and 64) with the highest level of support needs.  From its messy origins it had evolved into a highly efficient and very much valued source of funding (by both local authorities and disabled people) for the small proportion of people who need more support than the average user of social care services.  In order to qualify for support people had to be in receipt of the highest rate care component of Disability Living Allowance and to have support needs which were in addition to the level of funding available from their local authority.  These are people who, in previous generations, were consigned to institutional care. 

The largest group of ILF users (almost a third) are people with “severe learning disabilities” and around 6 in 10 have some form of learning disability.  According to the ILF, about one third are using their ILF grant to enable them to live in supported accommodation often with 24 hour care.  The ILF told the Dilnot Commission that

“Many of these people have previously lived in residential care or long stay hospitals….Local authority representatives have

told us that supported living placements for this group are becoming harder to finance since the ILF stopped accepting applications.”

Local authorities are facing a funding crisis and were clear, in their response to the government’s consultation on closure of the ILF that they would not be able to support people at the same level that the ILF had. There seems to be a general acceptance – within central and local government alike - that this may well lead to some people having to live in institutional rather than community settings.   

For others, while they may continue to be able to live in their own homes, there is an assumption that, although ILF funding enabled them to do things that non-disabled people take for granted such as engage in voluntary or paid work, leisure and education activities, local authority funding is only likely to be available for basic needs, such as help with getting up and going to bed, going to the toilet, and so on.  Whether people have to move into institutional care, or experience ‘institutionalisation in the community’ it would reverse a trend towards independent living which has been evident since the 1960s. 

Documents disclosed to the Court during the Judicial Review reveal that Esther McVey, Minister for Disabled People, asked her officials for information on how ILF users might be ‘protected’ after 2015.  Officials responded that the Treasury would not be sympathetic to a DWP bid to maintain funding and that the only course open to the Department was to develop a Code of Guidance on how independent living outcomes could be maintained once people are transferred to local authority funding.  However, as it was made clear that transitional funding was only going to be available for the financial year 2015/16 and it is very likely that people’s support will be reduced after that.

It’s difficult to see how progress on independent living will not be reversed in these circumstances. 

We need to document what happens, not only to people who currently use ILF funding but also those who would previously have been able to apply for it.  And challenge the government if there is evidence that people with high support needs are not being able to choose where and with whom they live, and do not receive support to enable them to participate in work, voluntary or leisure activities and in family and community life. 

Perhaps now is the time to start thinking about how we gather such evidence.