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Independent Living Fund Recipients

Volume 582: debated on Wednesday 18 June 2014

The independent living fund has transformed people’s lives. The ILF does exactly what it says on the tin: it liberates people who would otherwise not be able to live independently. It lets them make choices about how they live, things we often take for granted—when to get up or go to bed, what and when to eat. It allows them to work, to be active in the community and to live in their own homes. I challenge the Minister to guarantee to those in receipt of ILF that they will not become less independent as a result of his Government’s decision to close the fund in June 2015. That is what people fear; that is what they are frightened of—they fear losing their jobs, the staff whom they employ to support them and their independence. They fear being forced out of their homes and into institutions.

As my hon. Friend might be aware, in Wales the responsibility will go to the Assembly and then to local authorities. I have approached my authority, and it is uncertain what exactly is happening. There is a lot of fear out there among people who are totally reliant on the ILF payment to lead as normal a life as possible. They are being hurt now.

My hon. Friend makes a good point. The Minister might well say that he is passing the moneys and the responsibility to local authorities—through the Welsh Assembly in Wales’s case—but that will not ease people’s fears.

Order. Opposition spokesmen are not allowed to take part in a half-hour debate, whether intervening or making speeches.

Thank you, Mr Robertson, but it is important to recognise the number of Members present wanting to take part. I very much welcome that.

The Minister is a good Minister, and I am sure that he is not naive enough to believe that passing responsibility to local authorities absolves him of the responsibility for the decision. I am afraid that he will not get away with devolving responsibility and blame for the consequences of the decision to others.

I congratulate my hon. Friend on bringing this important debate to Westminster Hall. Does he agree that the dignity, the independence and the human rights of disabled people who need that high level of support can only be met by the continuation of the ILF?

I agree with my hon. Friend, which is why I am asking the Minister for guarantees that people’s independence will not be compromised under any future arrangements.

Disabled People Against Cuts calculates the existing annual cost of support at around £288 million, and yet the Government have only identified £262 million to transfer to local authorities. That discrepancy is not a good start. The Government are giving no reassurance that that money will be ring-fenced to spend only on support for disabled people to live independently, rather than be absorbed into broader council budgets.

Does the hon. Gentleman think that the structure in which the funding is delivered is more important than the services being delivered?

Absolutely. It is the services that matter, but any change in structure needs to guarantee people’s independence in future. Tinkering with structures and risking people’s futures is not something that anyone can do at the drop of a hat. I very much agree that what matters is services, not structure, but why change the structure if it is delivering, creating all the uncertainty and concern that is around?

According to Scope, £2.68 billion has been cut from adult social care budgets in the past three years alone, equating to 20% of net spending. That is happening when the number of working-age disabled people needing care is projected to rise by 9.2% between 2010 and 2020. In a recent survey, 40% of disabled people reported that social care services already fail to meet their basic needs, such as washing, dressing or getting out of the house, and 47% of respondents said that the services they received do not enable them to take part in community life. It is not surprising that people are desperately worried about their future.

Order. Contrary to what I said earlier—I have just reread my notes—Front Benchers may contribute with interventions, but not on subjects that are part of their own portfolio. Sorry about that.

I call Barbara Keeley.

Thank you, Mr Robertson. I am glad that that is clear now.

My hon. Friend the Member for Scunthorpe (Nic Dakin) is making an excellent speech on behalf of people who are worried about those vital resources, which will not be ring-fenced. Does he agree that there is an issue, as he has pointed out, about devolving to local authorities? My local authority is cash-strapped; 1,000 people will lose their care packages this year. Will the change not simply put a burden on unpaid family carers? Is that not a double burden, because people with the most difficult physical problems might be hard to lift and move—except by trained carers—which risks injury or fracture to them, as well to the carer doing the lifting?

My hon. Friend is right. She speaks with a lot of experience and insight into the issue, which she has campaigned on for a long while. She is right that the other group of people who might find themselves under significant pressure are the family carers of those now in receipt of ILF.

The worry, as my hon. Friend has indicated, is that the continued underfunding of social care will mean that the care system will simply not be able to support disabled people to live independently. The lack of reference to independent living in the definition of the well-being principle in the Care Act 2014, which local authorities will need to take into account when providing care, further fuels that anxiety.

I am grateful to my hon. Friend for giving way. The point that I wanted to make is that, in Islington, 100 people are dependent on ILF. Although the local authority has undertaken to continue that support next year for those currently in receipt of ILF, the authority cannot give any guarantee that that funding will go on in future, in particular given that Islington council is facing 40% cuts over the year. Discretionary funding such as for independent living will be difficult to find.

My hon. Friend is right. Interestingly, we have cases coming in from all parts of the United Kingdom, which illustrate that the issue is deep-seated in all our communities.

Not only are people in receipt of ILF worried, but their friends, carers and families are too. The cases of two of my constituents illustrate that well. Ashley Harrison, for example, is a Scunthorpe United fan, like me cheering on the Iron at Glanford Park. At 10 months old, he was diagnosed with cerebral palsy; he will turn 30 this year. Ashley has lived in his own bungalow since 2006. The ILF allows him to employ his own team of carers. Ashley is an inspirational man, a fighter, but he is worried about the control over his future being taken away from him. His mother says:

“The closure of the ILF would be nothing less than devastating for us as a family. Since Ashley was awarded his ILF allowance the whole family’s lives have changed for the better. ILF understands Ashley’s needs and always do everything they can to constantly improve Ashley’s life and enable him to live independently.

As a family naturally all we have ever wanted is the best for Ashley, which the ILF has helped us achieve. The ILF has always seemed to be the leading and positive force at meetings ensuring that social services match and meet Ashley’s needs. Without the ILF we all face a very uncertain future. The uncertainty that Ashley faced in his early years prior to receiving his ILF award have been daunting, frustrating and of course a constant battle with social services.

The alleged ‘smooth transfer’ over to social services is already proving to be nothing of the sort. Each and every meeting we hold (which are incredibly frequent) leave us having to justify Ashley’s needs as a disabled person. The assessments they ask us to complete are totally unsuitable for the severely disabled.

All of the disabled people living independently with the help of ILF are living their lives to the full. The fear is that if ILF closes these people will lose their human rights and dignity to live their lives as they should.

As a mother who has fought the last 30 years for Ashley to have the life he wants and of course deserves, I dread to think what the next generation of disabled people will have to endure without the positive support of the ILF.

I beg you to listen to myself as a mother of a disabled son and also listen to all those disabled voices who deserve to be heard.

Give each and every person the ability to live and achieve their dreams just as you and I can.

The Paralympics just proves how amazing disabled people can be!”

I am sure everyone will be moved by that testimony. It is an irony that, in my constituency, some recipients of ILF are among the most active people in the community, whether they are working, doing sport in the community or promoting disability rights. Debbie Domb and Kevin Caulfield are two of the most active people in my constituency, and they do a lot of positive good. The removal of ILF will be bad not just for them, but for my community as a whole.

I absolutely agree.

Let me move on to my second constituent, Jon Clayton, who illustrates what my hon. Friend said. He also receives ILF. Like Ashley, he employs carers who understand his disability. His sister writes:

“My brother Jon is quadriplegic, having been involved in an accident which was not his fault at the age of 18. He is now 54.

He is one of life’s truly inspirational people; an accomplished mouth artist—a gift he only knew he had after his life changing accident—living independently in his own home. He freely gives his time mentoring other disabled persons, helping them come to terms with another life. A life without limbs. A life without walking.

He has always sought to live as normal a life as possible. Having gone through marriage, divorce, being a step father, losing a partner.

He is both ordinary and extraordinary.

He relies heavily on his full time carers. Carers who he personally has ensured are trained to an appropriate and exceptional level to look after a person with specific and defined needs. One false move and he could (and has) spent 18 months bed bound with a pressure sore at the expense of some ill trained nurse.

His carers are trusted to ensure and give a high level of care, entrusted with the most personal of tasks from catheter changing, toileting, dressing…This has been part of Jon’s life since his accident. Something he has taken on with humour and dignity.

If the ILF is removed Jon will be unable to live independently. Being able to engage in what you and I would consider a normal life. He will be unable to travel, have holidays, visit family, visit friends.

The ILF has enabled independence. Given life, where life seemed over.

I would therefore urge you to do all you can to prevent this life enabling function—the ILF—from being eroded.”

Does my hon. Friend think it is a disgrace that, last month, when people such as his constituent turned up at Tothill street, the doors of the Department for Work and Pensions were locked against them? Those people simply wanted to hand a letter in to the Minister’s office, but no one was available, and I had to take the letter in by the back door.

I am sure all those who turned up to present the letter will want to thank my hon. Friend for carrying out that duty on their behalf. Obviously, it would have been much better had they been able to access the Department themselves, and I am sure the Minister and his colleagues will reflect on that. Sometimes these things happen, sadly, but the Minister has heard my hon. Friend’s concern, and I am sure he will want to address it.

A fundamental concern for Jon, Ashley and others is whether they will be able to employ their specialist staff in future. The question was raised with North Lincolnshire council, which responded on 9 June 2014 with these words, which are rather bureaucratic:

“We appreciate this situation may cause you concern as an existing Independent Living Fund customer and would wish to reduce any worry or anxiety you may have.

Allocation of future monies will be based on your updated assessment and support plan and on future Local Authority funding so at this stage we cannot give any specific guidance on the amount of monies that you may receive from us or cannot give guarantees on the future employment status of any Personal Assistants you may currently employ.”

As hon. Members can imagine, such “reassurances” serve only to heighten anxiety and build mistrust.

I return to my central question: will the Government guarantee that Ashley, Jon and all those currently receiving ILF will not lose their independence as a result of the Government’s decision to close the fund? I believe that that decision is aimed at saving money, but it might end up costing far more in other budget areas, such as health.

A better way forward would be for the Government to engage with ILF recipients—they clearly had an opportunity to do so recently when my hon. Friend the Member for North Tyneside (Mrs Glindon) went with recipients to the DWP—to learn from their experience and to find ways of shaping future services that are cost-effective, but that continue to deliver true independence.

Does my hon. Friend agree that another profoundly worrying aspect is that the coalition Government have been in situ for four years? The worry he describes has been expressed by my constituents Rosemary and David Burslem for four years, but it is still unresolved. What we are seeing from the Government is a hospital pass to other people, who will have to make the difficult decisions the Government have deliberately left for four years and have now misjudged.

That is why I keep repeating my question to the Minister. This is happening on his watch; he is a good Minister, and he is a man who, I believe, cares, but he cannot wash his hands, like Pontius Pilate, of the future of these individuals. He needs to nail his colours to the mast, and today he has an opportunity to do that by guaranteeing that, as a result of the Government’s decision, there will be no detriment to people currently receiving ILF. My hon. Friend is right to emphasise that people have been living with this worry and concern for the past four years, which has affected the health and well-being not only of ILF recipients, but their families, friends and carers.

My hon. Friend is making a powerful case on behalf of all users of the ILF. Does he agree that it is not surprising they are concerned about the impact of the closure, given that the Department’s own equality impact assessment says it will be for individual local authorities

“to determine how to allocate the funding transferred to them…This is likely to have an adverse effect on ILF users because of monetary reductions in the amount of support a person receives and because of changes in how that support is delivered”?

When the Government’s own equality impact assessment tells them the closure will have that impact, they must surely respond.

That is deeply worrying, as my hon. Friend says. That is why it is good the Minister has the opportunity today to give people those guarantees and reassurances and to address the concerns raised by the Government’s own impact assessment.

Disabled People Against Cuts points out that, for the 17,500 people in receipt of ILF,

“the closure of the Fund will have a devastating impact on the lives on these individuals and their families. It also has a much wider significance because at the heart of this is the fundamental question of disabled people’s place in society: do we want a society that keeps its disabled citizens out of sight, prisoners in their own homes or locked away in institutions, surviving not living or do we want a society that enables disabled people to participate, contribute and enjoy the opportunities, choice and control that non-disabled people”—

like us—“take for granted?”

Does my hon. Friend agree that the ILF has proved to be a source of social and economic emancipation on an extra-statutory basis? No other scheme delivered by government—local or otherwise—could do that. The ILF has developed a specialism, an insight and a sensitivity that cannot be replaced by anything else.

That is an excellent point; the support provided by the specialists who understand the area of work has been transformational. The independent living fund was a visionary way forward for disabled people. It would be worse than a sadness—it would be a tragedy for us all—if the Government, in pursuit of micro-benefits, were to lose for society a macro-benefit. We cannot wash our hands of what happens, and that is why we are here today, arguing on behalf of disabled people and the recipients of the ILF. Let us consider the words of Mahatma Ghandi:

“The greatness of a nation can be judged by how it treats its weakest members.”

People like Jon and Ashley are not weak but strong; but the ILF gives them independence, and liberates their strengths. Now is the Minister’s opportunity to guarantee that their future independence will not be compromised by the closure of the ILF.

It is a pleasure to serve under your chairmanship this morning, Mr Robertson. I congratulate the hon. Member for Scunthorpe (Nic Dakin) on securing, and colleagues on taking the time to take part in, this short debate. I suppose that most people will know me by now, and know that I will answer questions as directly as possible; where I cannot answer I will, obviously, write back.

Can I guarantee that no one in receipt of ILF money today will be adversely affected by the changes that we are going to make? No, I cannot, and no Minister of any colour or persuasion could. I want to highlight one point: in July 2010 the scheme closed to new entries. People who have needed the sort of support that ILF has been giving since 1988 have, since 2010, been getting it from local authorities. The hon. Member for Wrexham (Ian Lucas) made a point about waiting four years. One of the reasons was the delay when we were taken to court—and it is a democratic right for that to happen. The court made a decision, interestingly enough, not on what we were doing, but on process—on whether there was enough evidence that we had taken the Equality Act 2010 into consideration. I was appointed to my present portfolio almost in the same week.

My hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) asked whether the issue was about process and who was delivering the help, or about whether we can get the help to the people who deserve it, such as the constituents of the hon. Member for Scunthorpe, and others whom I met in my constituency last night, who talked pragmatically about the future of ILF, and how the scheme will work. Most—nearly all, I think—local authorities are now in the transitional process with us. Following the court ruling, once I announced my decision that we would be going ahead—it appears I may be challenged on that as well—I looked specifically at the process, not at the decision that had already been made. In 2015, we will be transferring all the funding—it is not a cut—that was in ILF.

Bear with me: I am very short of time and I did a deal with the hon. Gentleman before we started that I would take less time so that other hon. Members could intervene. If the hon. Gentleman intervenes on me now, it will make it difficult. I am more than happy to write to him on any issue if he wants me to.

I understand fully people’s concerns about the change in practice; those concerns arise with any change affecting any benefit, but there really should not be concern. The people who now deliver the care to people in the community are exactly the same as those who will deliver the version of the ILF that is provided in the future. All that I can try to do is ensure that we monitor what happens as carefully as possible, to see that people’s rights and needs are met as the scheme is transferred out. It is important that none of us underestimates the skill and dedication of the people who go out to do the reviews. I have a team in London. Obviously a certain salami-slicing goes on; we want to try to get that money down and into the system, so there are the same people doing assessments. Will some of those assessments have to be tweaked, over a period of time? Absolutely, they will be, and we will help. We will give as much assistance as we can with that.

I want to touch on what the hon. Member for North Tyneside (Mrs Glindon) said about the delegation to the Department for Work and Pensions. I am sure that it was peaceful, well-mannered and nice, but that is not always the case. If the hon. Lady looks at the side of the building she will see that paint has been thrown over it, and there have been nasty incidents outside. If she wants to come to see me privately I shall talk about that. That is why the security people were there: we do not know what will happen until people turn up. If I had been there, I would have met the hon. Lady. She knows my door is always open. I have seen her, and if she wants me in future to meet a group of the people who were with her, I shall be more than happy to do that, but there have been nasty incidents and the security situation is understandable. The hon. Lady frowns at me, but those things have happened—she just needs to take a look at the side of the building.

Okay, I will shout; but there was certainly no slight intended to the hon. Lady or the people with her. Security make the decision, and like all Ministers I must bear with them on that. I would obviously meet at any time and place.

The subject is enormously emotive and important, but we must not make assumptions about what will happen. My reason for thinking that we can have some confidence is that the scheme has been closed since 2010, so people with exactly the same needs as the people we have heard about in the debate have had them met by the new system. They have been helped by it. It is vital not to have a two-tier system, as we do at the moment. People who have needed a version of the ILF since 2010 have had that from the local authorities, but people such as those I met last night, who are on the scheme, are having their assessments, and the change is taking place. Did families say to me yesterday that some of the questions seemed bizarre, given the disabilities of the person concerned? Yes—and I am taking that issue up. Colleagues may want to liaise with me and work with me; I think that is the key to this.

I will be honest and frank: the scheme is closed to new entries and the money will go out to local authorities. We will monitor what happens very carefully. Will there be teething problems? Yes. Will there be issues to do with the forms? Yes. However, I think we desperately need to get away from the process and from thinking that my Department, or a part of it, is the best place from which to bring a benefit right into the communities and to the individuals who need it. That is not the case. I came new to this.

I am grateful. Does the Minister agree that because new entrants since 2010 will come within the scheme, and the budget that he transfers will be the same as it is now, inevitably people who are now receiving money from the ILF will have their income reduced?

No. I completely do not agree with that logic. I know where the hon. Gentleman is coming from. [Interruption.] He can shake his head as much as he likes, but I am always honest and straight. Do I agree with him? No, I do not, and the reason is that those people are already being helped. Those who were in the scheme, who have come in since July 2010, are already being helped by the money that is in the local authority part, not by the money that is coming across from us. The money that is coming across with the ILF is the funding that sits with the ILF now. That is how it is, and we may have to disagree. If I am wrong factually, I shall write to the hon. Gentleman and tell him.

I do not have powers to ring-fence it, and we have had such debates before. It was a Treasury decision not to ring-fence money that is to go down to local authorities in that way. I am bound by that, and I agree with that.

An important point is that we are not just going to give the money to local authorities and say, “That local authority is doing really well, but we know that one is doing really badly, and we are just going to let it get on and do that.” As the disabilities Minister, I will want to publish a league table showing how it is being done, and which local authorities are good.

I am not going to give way.

It is really important that we all participate and make sure as best we can that the system works. It appears to be working. There will be anomalies, and I am sure that tomorrow morning my postbag will be full of letters from people saying they have joined the scheme since 2010 and it has not worked. As yet I have not found that, but I am sure I will. It is an enormously emotive and important subject, but those are people I desperately want to help. That is why I am doing this job. I would not do it for any other reason.

Do I think the scheme will help? Yes. Do I think that localism is better than a top-down approach? Yes, I do. I understand the concerns; but let us see how things roll out. Let us look carefully at the work that has been done since 2010 for the people who did not join the scheme but have gone into local authorities. Some of the scare stories that are out there, especially in some parts of the press, and from some lobby groups, are unfounded. I think that we can move forward, subject, of course, to what happens in the courts in the next few months.

Sitting suspended.