Disabled People: Independent Living Fund

Baroness Campbell of Surbiton Excerpts

Monday 31st March 2014 Grand Committee

Asked by

[Baroness Campbell of Surbiton]

To ask Her Majesty’s Government what arrangements they are putting in place to ensure that disabled people currently in receipt of money from the Independent Living Fund will not be left in hardship when the Fund is wound up next year and the responsibility for Fund recipients is handed to local authorities.

[Baroness Campbell of Surbiton (CB)]

My Lords, independent living lies at the heart of disabled peoples’ participation in their community. My interest in this concept is both personal and professional. Independent living support has enabled me to gain an education and enjoy a fulfilling career. Without it, I would be incapable of doing anything beyond the walls of my home. I am not alone; there are thousands just like me, who have been liberated by this support.

On 6 March, the Government issued a statement announcing, for the second time, their intention to close the Independent Living Fund, the ILF. Only the date of closure has changed: it has been put back to June 2015. Their first attempt at closure was challenged by a small group of disabled people who took the case to the Court of Appeal in 2013. The court ruled in their favour, announcing that the Government’s decision was unlawful under the public sector equality duty. The courts recognised that ILF users will be “significantly disadvantaged” if they have to rely solely on existing local authority provision, and that something more is expected of the Government to fulfil their obligations under the Equality Act and the UN Convention on the Rights of Persons with Disabilities.

One of the judges 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 reconsideration as to whether the public sector equality duty had been fulfilled. He also warned that,

“the level of Treasury funding 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”.

I look forward to hearing from the Minister how the Government have addressed the concerns raised by the courts. Their equality impact assessment offers precious little reassurance on either count.

The Government’s decision to close the fund was not a surprise. Like so many government-funded initiatives to support disabled people’s independence, it fell prey to Treasury cuts and a shaky case for non-duplication and rationalisation. While the ILF budget has risen to the region of £290 million, this money helps over 18,000 severely disabled people, many of whom were previously dependent on expensive residential care or traditional day services. One of their biggest fears is of being forced to return to such provision when ILF funding ceases.

Times have changed. We now recognise that all Britain’s citizens, including those with the most severe disabilities, should enjoy the same life chances, freedoms, and responsibility to contribute, as everyone else. The days of mainstream institutionalised care should be behind us. As the deputy president of the Supreme Court said last week, when ruling that three disabled people had been deprived of their liberty in comfortable care facilities:

“A gilded cage is still a cage”.

Today, six out of 10 ILF users have some form of learning disability, and people—

[The Deputy Chairman of Committees (Lord Bichard) (CB)]

My Lords, there is a Division in the House. The Committee will adjourn for 10 minutes.

--- Later in debate ---

[Baroness Campbell of Surbiton]

To continue, today six out of 10 ILF users have some form of learning disability and people with significant learning disabilities are the highest single group, making up 33% of all users. About one-third of these use their ILF grant to enable them to live in supported accommodation. They and their families have paid tribute to how it has changed their lives, improved their health, expanded their horizons and, for some, opened up training and job opportunities. It became apparent when the fund was closed to new applicants in 2010 that this group would be particularly disadvantaged. 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 ILF stopped accepting applications”.

The Government’s consultation responses and impact assessment make it quite clear that ILF users will face a reduction in funding. This was confirmed by the response to the consultation from the Association of Directors of Adult Social Services and the Local Government Association:

“As ILF recipients transfer into the LA system in 2015, and are subsequently reviewed against”,

the local authority assessment criteria,

“the value of the personal budget calculated through the Resource Allocation System … will generally be at a lower level than the initial ILF/LA budget”.

Disabled people and their families are acutely aware of this prediction. They see their autonomy, independence and well-being slipping away. It is not surprising that they want to save the ILF because they mistrust local authorities’ ability to deliver independent living outcomes—outcomes which enable them to live in the community and not simply survive, the latter now being described by many as “clean and feed” provision.

Scope’s recent research evidence also indicates that local authority social care eligibility criteria and assessment based on personal care needs cannot hope to replicate ILF outcomes. It is true that equivalent funding is being transferred to local authorities, on a formula based on ILF estimates of what it would have paid recipients in each authority. However, the Government and local authorities are adamantly opposed to protecting this money via ring-fencing, so there is no guarantee that the funds will be used to support those transferring from the ILF. I can see the temptation to plunder the fund now: for mending potholes, funding crisis care or simply balancing the books. Let us not forget that the sum involved is a tiny fraction of further cuts planned in local government funding.

The Government giveth and the Government taketh away. For better or worse, the Government have decided to close the ILF. My concern now is that without proper protection and monitoring, the new process and procedures for delivery will fail to meet the 21st-century rights of disabled people to independent living, as articulated in Articles 19, 24 and 27 of the UN Convention on the Rights of Persons with Disabilities. It is clear that the courts share this concern.

Policy responsibility for future support for ILF users now passes to the Health Secretary and implementation falls within the framework set out in the Care Bill. I am a little bewildered that the Health and Social Care Minister is not responding to this debate: surely we are here to debate the future of independent living support, not the past. Along with my fellow Peers, I have worked closely with the Government to ensure that disabled people’s rights and responsibilities are embedded in the Care Bill: Inclusion London, Disability Rights UK and Scope have all produced constructive research evidence and practical ideas, shaping the continuity of care provisions, assessment procedures and much more. I want to see this model of collaboration throughout the ILF transition. In addition, regulations and detailed statutory guidance on the assessment of needs being prepared under the Bill must specifically address the needs of those transferring from the fund. Can the Minister confirm whether this is happening?

We have only 15 months to get the new structure for delivering independent living support fit for purpose. I am therefore asking the DWP, DCLG and the Department of Health Ministers for two immediate actions. The first is to initiate a reference group to oversee and monitor the effects of the ILF transition for two years. This group should work along the same lines as the current continuity of care group which involves disabled people, including myself, Government officials and local authority practitioners. Secondly, the Ministers for Social Care and Local Government should develop statutory regulation and guidance to ensure that the current principles and resources secured for independent living purposes continue after the transfer.

Without that twofold plan the Government are in jeopardy of undoing 30 years of independent living development, which has brought the most severely disabled people out from the shadows of dependency services. Let us ensure that they do not return to the back room, watching TV, or end up in 21st-century “gilded cages”. I look forward to hearing the Minister’s response, and very much look forward to this debate.