Disabled People: Independent Living Fund

Baroness Grey-Thompson Excerpts

Monday 31st March 2014 Grand Committee

[Baroness Grey-Thompson (CB)]

My Lords, I thank my noble friend Lady Campbell of Surbiton for tabling this debate.

In my time in your Lordships’ House, I have had the pleasure of participating in, among others, the passage of the Welfare Reform Act and the legal aid Act, and the Care Bill. Through the legislation that has been passed we will see some of the biggest changes to the lives of disabled people in many, many years. While there have been varying amounts of media coverage over the welfare and legal changes, the effect of disbanding the Independent Living Fund has happened rather under the radar—perhaps because the role and funding available has been gradually eroded over time.

Inclusion London has argued that the ILF provided both value for money and value for disabled people. The ILF has only about 2% overhead costs, compared to 16% on average, for local authorities. The £350 million the ILF costs in government funding each year supports around 20,000 disabled people. This equates to, on average, £17,500 per person, equivalent to approximately £337 per week, or £48 per day. This compares—I was going to say “very well”—extraordinarily well to the notorious Winterbourne View private hospital, where the average cost was £3,500 a week.

The user base of ILF is mostly young disabled people; only a small percentage, around 6.4%, is over 65 years old. The ILF has had consistently high user outcome satisfaction, ranging from 94% in 2009-10 to 97% in 2012-13. Perhaps that was because it was centred on the person. I, like many, was extremely disappointed that the journey of the ILF appears to have been so tortuous recently and that disabled people, having been through the High Court case, were thrown a lifeline only to have it removed again. That was very ably explained by my noble friend Lord Low.

--- Later in debate ---

[Baroness Grey-Thompson]

My Lords, it is important to remember that the Independent Living Fund was designed to give disabled people the same rights as anyone else: to work, to socialise, to have a family, to participate in society and—I know it sounds a bit dramatic—just to live. That was brought home to me when a number of people got in touch with me because of this debate. Fran said that it enabled her,

“to live, not just exist”.

Right now, I feel very lucky that, at least for the time being, I do not have care or support needs.

We are debating this issue at a time when the media coverage surrounding disabled people is inherently negative. You only have to scan the coverage to see that they—or rather, “we”—are being portrayed as scroungers and skivers who are a drain on society. The size of the welfare budget is endlessly debated, but what it widely encompasses is usually not. Scope’s report, which was launched this morning, highlighted how little attitudes have changed in many areas over the past 20 years.

My real worry is that it will become “too expensive” for disabled people to live independent lives. If the funding is not ring-fenced, a disabled person’s independence is balanced against a contribution to, say, upgrading street lighting. There is a real danger that it becomes a decision about the benevolence that we choose to bestow on disabled people rather than something that should be clearly defined.

I mentioned that a number of people got in touch with me, and this is a snapshot of what I was told. Sue told me that they would move from being able to fit care plans to people’s needs to having to plan around care visits. Jackie said that once the ILF goes, so does the safety net around disabled people. Rachel said that disabled people are frightened for their future, and that they may be made to live in care homes. Fran, who I quoted earlier, gave a very balanced response:

“By employing and managing my own support, I create full time permanent jobs for personal assistants on a living wage at zero profit (I manage, including paying Tax and NI and recruit my staff for free) rather than carers on zero hour contracts on min wage with private companies profiting. Also it has been strongly evidenced that this central fund costs less than equivalent social services support per hour, due to low central administration and overhead costs, so care packages will need to be cut to create any saving. I am deeply scared this is putting thousands of Disabled people back to the pre-1980s era—unseen, institutionalised or trapped at home with inadequate support”.

I believe that the time to save the ILF in this format has passed. However, I like the idea put forward by the noble Lord, Lord Kirkwood, that we need to reconfigure what we are doing. It is essential that what happens from here, and the protection of the budget, get the urgent consideration they require.