Independent Living Fund

Susan Elan Jones Excerpts

Tuesday 9th January 2018 Westminster Hall

[Ian C. Lucas]

Absolutely. It is about those difficult decisions that local authorities have to make to balance their budgets. If they are given a budget, the temptation is to do the best they can with their money but to trim, which can have a real and adverse impact on the individuals concerned.

My own efforts to get to the bottom of the financial position of disabled people who previously received money from the independent living fund have, I am afraid, met with little success to date. I tabled some parliamentary questions and the Department for Work and Pensions blandly said in response that there was no central record of the amounts received by individuals following the closure of the fund in England. If one was cynical, one could say that that was convenient but anyway, frankly, it is just not good enough.

My concern, to pick up on the point made by my hon. Friend the Member for Coventry South (Mr Cunningham), is that we are in an era of declining local government budgets and are dealing with some of the most vulnerable people in our society, who were previously in receipt of funding from the independent living fund that enabled them to live their lives in the community. In many cases, however, they now receive less money than they did previously.

[Susan Elan Jones (Clwyd South) (Lab)]

Does my hon. Friend and parliamentary neighbour agree that two debates are happening? One is about devolution, localism and the like—a lot of which is very creative—and the other about everything happening in the background with an agenda for cuts. That is where the problem lies and that is how people with grave disabilities could be greatly affected.

[Ian C. Lucas]

That is absolutely the case, and I want to talk about one of the people affected: the constituent I mentioned earlier, Nathan Davies.

Nathan is a proud resident of Wrexham and 40 years old. Aged 15, he was diagnosed with a degenerative condition, Friedreich’s ataxia, which I had never heard of until Nathan told me about it. In broad terms, it is a rare, progressive genetic condition and, in most cases, a person with the disease will be confined to a wheelchair, as Nathan is, within 10 to 20 years of diagnosis. It causes people to tire easily.

Despite his diagnosis, Nathan worked as a journalist for many years until his medical condition meant that he could no longer continue to do so, although that did not mean he stopped being active. Since 2010 he has received funding from the independent living fund, enabling him to live independently with the help of his family and carers. He continues to write and has published an authoritative study of football grounds in Wales—available from all good book stores—and he now campaigns on disability issues. He is not a man to be trifled with, he campaigns hard in elections and he is known as an important local character in the Wrexham area. He is also a big supporter of Wrexham association football club, which will of course return to its rightful place in the Football League next year—promotion permitting.

Last year Nathan’s contribution was recognised by his local Wrexham Glyndŵr University with the award of a richly deserved honorary degree. Today, pretty typically, Nathan is on the front page of The Leader local newspaper in Wrexham, campaigning against a council proposal to charge disabled people for car parking. His resilience and determination are admirable qualities, in particular in the face of the condition he suffers from. We should be helping, not hindering, people like Nathan.

Nathan has pointed out to me that in the past he received specialist advice from the independent living fund, the staff of which he found very helpful in discussion and for assessments. That is something I have heard from other recipients when I have attended recent consultation events on the ILF. As a result of support from the fund, Nathan has been able not only to live in the community but, as the independent living fund intended, to contribute in a really positive way to the community in which he lives, notwithstanding his disability and the challenges that he faces.

The difficulty is that doubt about the future of the fund in Wales is now causing Nathan great worry. Devolution of funding to local councils when their budgets are under great pressure means that there is no guarantee that the levels of funding will be maintained, even if an individual recipient’s condition deteriorates—for example, I mentioned Wrexham County Borough Council’s proposal to introduce car parking charges, which will be an additional expense for someone such as Nathan. The limited research available from England indicates that, as a result of the changes following 2015, more recipients have seen their income fall than increase and 22% of recipients have said that their income has “decreased a lot”; 19% of recipients have said that their day-to-day support has got “a lot worse”; and, in addition, local councils have informed 34% of the recipients of extra restrictions on how they may use their money for support.

In October 2016 the UN Committee on the Rights of Persons with Disabilities reported on the fund:

“The Committee finds that former Fund claimants have seen the support they received from local authorities substantially reduced, to the extent that their essential needs in areas such as daily personal care are not sufficiently covered.”

My own experience is that local authorities are under great financial pressure, and their staff are subject to increasing stress as they make the budgeting decisions.

The UK-wide consistency that characterised the independent living fund funding is no more. Different national systems, as well as devolved budgets within some of those systems, mean that there is likely to be an increasing disparity in provision for individuals in different parts of the country. I struggle to understand the rationale for that approach. It seems to diminish the support given by the previous administration of the independent living fund and to create great uncertainty in the minds of recipients of the fund.

In our constituency surgeries, we all see the great complexity of payments made to disabled people—direct payments, the independent living fund and personal independence payments—and it is difficult for professional advisers to find their way around the system, let alone individual claimants. My key plea to the Minister, who I am very pleased to hear was confirmed in her post earlier this afternoon—that is hot news for everyone—is that, at the very least, the Government should be collecting the detail of the impact of the ILF changes on previous recipients.

We should know and be obtaining from local authorities details of the financial impact of the closure of the fund on individuals. The suspicion is that the transfer of the funds to local authorities is a way of shifting difficult decisions on assessments to councils with diminishing funds, and that the failure to ring-fence budgets will reduce payments. This is the worry in the minds of disabled recipients. If the Government want to assuage those worries, they need to produce real evidence that that is not happening.

In Wales, there is real concern about the Welsh Government’s intention to devolve ILF budgets to local councils. Nathan Davies has arranged an exhibition, characteristically, at Theatr Clwyd in Mold, to highlight his concerns and to put his campaign out there. I will raise those concerns directly with the Welsh Government and I will rely on the evidence from the all too limited research in England to show the adverse impact of the changes in ILF on the income of previous recipients. The lives and experiences of some of those vulnerable individuals have been adversely affected by the changes in recent years. In order to address those concerns, we need more information from all the local authorities in England, to find out the real impact on the individuals concerned, and to take action to improve the situation for those people.

--- Later in debate ---

[Marsha De Cordova (Battersea) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Main. I congratulate my hon. Friend the Member for Wrexham (Ian C. Lucas) on securing this important debate and I thank everybody for their valid contributions and interventions this afternoon. My hon. Friend makes a really good point in that this issue has probably not been discussed. Given it has been nearly two and a half years since the fund was closed, it is worth our revisiting it today. He points out that this is a technical issue. Also, he made the really important point that we need to know the quantitative impact of the devolving of funds on existing claimants. He rightly set out the importance of the fund and the part it has played in many disabled people’s lives to enable them to live an independent life and able to fully participate in society.

My hon. Friend set out how the fund made a contribution and how it was devolved to local authorities, particularly in England. That is a good example of the impact it could have when the scheme is changed in Wales. As it stands, it will potentially be devolved to local Welsh authorities, as has happened here in England. He made the point that local authorities’ budgets have been put under great strain, given the funding cuts they have had to endure over the past seven years. We need to take a fresh look at the way funding is given to support disabled people.

I pay tribute to Nathan Davies, a constituent of my hon. Friend the Member for Wrexham and a recipient of the fund. He is a disability rights campaigner and I thank him for all that he does. We need to hear the voices of disabled people so that we fully understand the impact that decisions made here have on disabled people outside.

[Susan Elan Jones]

Does my hon. Friend agree that one of the fears that my hon. Friend the Member for Wrexham, I and others have is that, because there are such pressures on council budgets, there will be great campaigns on locally based issues—the closure of a library or the like—but individuals with disabilities will not have that same sort of voice and could therefore be left unheard and with financial problems as a result of the changes?

[Marsha De Cordova]

My hon. Friend makes a really valid point. She is right. We need to ensure that the voices of disabled people are heard. I can refer back to my own experience here in London in a particular local authority when the campaign on the closure of the independent living fund began. A lot of campaigning took place. It is important that we encourage and empower disabled people to ensure their voices are heard. I totally take her point that we need to ensure disabled people’s voices are not lost in any of the debates. As a disabled woman myself, my role is to ensure disabled people are empowered and their voices always heard.

From the outset it is fundamental that any support for severely disabled people is adequately funded so that we can ensure people with disabilities can live independently. We know that disabled people are twice as likely to live in poverty compared with non-disabled people, in part due to the extra costs associated with living with a disability. I cannot carry on further without talking about the Government’s past record in terms of the disproportionate impact that their cuts have had on disabled people. There are 4.2 million disabled people living in poverty and over the past seven years many disabled people feel they have been scapegoated by the Government. A 2016 inquiry by the UN’s Committee on the Rights of Persons with Disabilities found that since 2010 the UK Government have been responsible for “grave or systematic violations”.

The independent living fund—I will refer to it as the ILF—closed in June 2015. The funding was devolved to English local authorities and the Scottish, Welsh and Northern Irish Governments. Devolved Governments adopted their own different policies. We have already heard about the Scottish, Welsh and Northern Irish policies. The ILF was originally set up in 1988 to help cover the extra costs of being severely disabled. It was also to ensure that disabled people could lead a full and active independent life in their community, rather than living in institutions or in residential care. At the time of the fund’s closure, more than 16,000 disabled people in Britain were receiving an average of around £350 a week towards the costs of living independently.

The ILF was a vital financial resource for many severely disabled people that enabled them to live independently. It helped to cover the everyday tasks that many of us take for granted such as cleaning, washing, cooking, going out and being able to participate fully. At the time of the closure the coalition Government stated that all existing recipients would continue to be funded by their local authorities. In reality, that has not always been the case. It was suggested that many local authorities would not ring-fence funding and the grant would simply be absorbed into a general pot.

For example, Disability Rights UK research suggested that only 29 councils in England would ensure non-ring-fenced funding would be allocated. Indeed, the UN Committee on the Rights of Persons with Disabilities,

“observed that social care packages have been reduced in the context of...budgetary constraints at the local level.”

As I have alluded to, we know that since 2010 local authorities have come under extreme pressures and have seen their budgets cut. They will continue to have to make cuts and it is unsure how much support disabled people will receive. For example, when an individual who received 27 hours of support a week through the ILF was reassessed under the local authority arrangement, he was to be given just nine hours’ support. Potentially he would have to make contributions as well, and naturally that would have been unaffordable.

The extensive cuts to local government funding have ensured that in many cases some disabled people have been restricted or limited in the lives they could lead. As has been pointed out, there were local campaigns; I was not in this place at the time but I am led to believe that there was a protest here, by disabled people who wanted to change Government’s decision to end the independent living fund in its current form without devolving it to a local level. Despite assurances from the Government of the day, support has been removed from some disabled people, and reduced for those with the highest support needs. In England in particular, there is pretty much a postcode lottery; the level of support that people get is almost dependent on the local authority area they live in. We would all agree that it is fundamental that disabled people’s independence should not be dependent on the level of funding or eligibility criteria set by an individual local authority. Distribution of funding should also be based on need; therefore there should be some sort of universal policy for how that is done.

I want to speak briefly about eligibility. That is determined by the local authority, and we do not see, in many cases, whether recipients’ support has decreased or increased. A decrease would undoubtedly have an impact on someone’s ability to live independently. I share the concern of my hon. Friend the Member for Wrexham and hope that the Minister can respond on the important issue of what the impact of the changes to the independent living fund has been. How many recipients’ support packages have been reduced, and how many have remained the same? Are there any instances, among so many disabled people, of the support being enhanced? It is also important that we should know that disabled people’s voices will be included in the future when decisions are made about them. That is something that I believe and take a stand on, as does the Labour party. Since 2013 disabled people have experienced £27 billion in welfare cuts, affecting social security and social care support.

As I said at the start of my speech, we believe that it is fundamental that adequate funding is provided to enable severely disabled people to live independently. The Government must ensure that local authorities and devolved Governments are adequately funded. I urge the Minister to touch in her response on how we will deal with working-age disabled people.