Independent Living Fund

Nicholas Dakin Excerpts

Wednesday 8th July 2015 Westminster Hall

[Nic Dakin (Scunthorpe) (Lab)]

I beg to move,

That this House has considered the effect on recipients of the transfer of the Independent Living Fund to local authorities.

For many people, the protest in Members’ Lobby during Prime Minister’s questions a few weeks ago may well have been the first time that they came across the independent living fund, but right hon. and hon. Members will be well aware of its benefits from contact with constituents who are recipients. As I said a year ago, in June 2014, when I last had an Adjournment debate on the subject, the independent living fund does what it says on the tin. It gives severely disabled people their independence and lets them make choices about how they live—about things we take for granted, such as when to get up or go to bed, and when and what to eat.

The independent living fund began in 1988 as a national resource dedicated to the financial support of severely disabled people, enabling them to choose to continue living in the community. In March 2014, the Government announced that they would close the ILF in June 2015 and that responsibility for ILF users would be passed to local authorities. That has now happened, yet a year on from my last Westminster Hall debate on the issue, ILF recipients tell me that they are no nearer to getting answers to the questions posed then. Consequently, their worries about the future continue to multiply. The promises given that the changes would be well managed and that people in receipt of ILF would be consulted and kept informed throughout the transfer process do not appear to have been effectively delivered, at least from the viewpoint of my constituents in north Lincolnshire.

Ashley was diagnosed with cerebral palsy at 10 months old. This year, he will turn 31. A year ago, his mum, Jeanette, shared her concerns about the future, saying:

“The alleged ‘smooth transfer’ over to social services is already proving to be nothing of the sort. Each and every meeting we hold 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.”

Last week, Jeanette updated me. Sadly, her fears have not been allayed, and she is continuing to have to battle for her son. She said:

“We have only received a contract from the local council in the last week and went a year without any form of contact from adult social services. If it wasn’t for me fighting for Ashley there would be no contract and nothing would be in place for the changeover. There is no money in place for Ashley’s carer’s holiday, sickness or training pay; this cannot be claimed back from the Government. Every year Ashley’s situation will be reviewed and once again I will have to fight for my son.”

Another constituent, Jon, for whom the ILF has been a lifeline, had an accident 35 years ago that left him paralysed from the neck down. He told me last week about the contact he had had from social services this year:

“So far I have only received generic letters. I have had no contact, no visit, not even a phone call. I feel that decisions are being made about my life that I don’t know about. I have not been given any assurances about my carers and their jobs or their wages.”

[Mary Glindon (North Tyneside) (Lab)]

I congratulate my hon. Friend on securing this important debate. Does he agree that there will be a bigger problem, given that local authorities that have already had their budgets cut by £4.6 billion are not receiving enough money to compensate for the ILF money lost? That will definitely affect our constituents.

[Nic Dakin]

My hon. Friend is absolutely right to put her finger on that area of serious concern. If we believe the people who are experiencing the transfer—and I have no reason not to—the smooth transfer that was promised clearly is not happening. The reality on the ground is that many ILF recipients, their families and the people they employ to deliver their care still do not know where they stand, which is clearly unacceptable.

[Andy Slaughter (Hammersmith) (Lab)]

A number of my constituents have benefited hugely from the ILF. I am very pleased to say that the Labour-controlled council in Hammersmith—a well run council—is ring-fencing the money and making sure that there is a smooth transition, but most authorities do not know how much money they are getting, and the Government are only giving them about half the funds. Is that not a disgraceful situation and a terrible way to treat people?

[Nic Dakin]

That is very much part of the issue at the moment, and I congratulate my hon. Friend’s council on being one of those that are making the right stand.

Disabled People Against Cuts, which organised the demonstration last week, has argued:

“At the very minimum the ILF funding should be ring-fenced for the continuing care and support of existing ILF recipients when funding is transferred to Local Authorities and devolved administrations”.

That is not being done and, in an age of austerity and deepening cuts to local authorities, the funds will get lost in the wider budget. That is the key and crucial fear.

DPAC sent freedom of information requests to 151 different local authorities, asking how many are ring- fencing the funding. The response showed that only 21.43% were doing what the council in my hon. Friend’s constituency is doing, whereas 50% said they were not doing that. At the time they were asked, 28.57% still had to decide what they were going to do.

What will further budget cuts bring? As of now, Ashley is allowed to keep his carers, but in a year’s time, will that change? Will his family have to deal with a succession of strangers who do not have time to get to know them and understand their needs?

Leonard Cheshire Disability published a report in 2013 stating that in England, 60% of councils use 15-minute visits, which are not long enough to provide adequate care, with disabled people having to choose whether to have a drink or go to the toilet. Hopefully, things have improved since then, but it is understandable that such reports fuel ILF recipients’ concerns. Those fears are backed up by Disability Rights UK, which made the following observations last week on the eve of the fund’s abolition:

“The monies being transferred from the ILF to local authorities will not, in most areas, be ring fenced meaning that the money can be spent according to local decision rather than necessarily on those in receipt of ILF funding.

There is currently no indication of whether funding for ILF recipients will continue to be transferred from national to local government beyond 2015/16.

The level of social care funding in real terms has, and is likely to continue to be, cut overall outweighing many times the additional funds being transferred from the ILF.

The consequences are that some disabled people in receipt of ILF funding will no longer receive any support at all; and others will find their support package reduced.

We want to see equity of support that achieves independent living across all impairments and age groups—closure of the ILF in current conditions will not achieve this.”

That summarises the strong concerns out there in the community. Scope, Leonard Cheshire Disability, the Spinal Injuries Association and various trade unions are among many other organisations that share those concerns.

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

My hon. Friend is making a very powerful speech. Oldham, my constituency, is another local authority area that is promising to support families and make sure that the ILF budget is ring-fenced, but I am aware that that is not happening elsewhere. This is not only about the person who is disabled, but about the families, particularly when parents are the carers. They are extremely worried about the uncertainty, and hopefully the Minister will be able to respond to that point.

[Nic Dakin]

My hon. Friend puts her finger on the heart of the issue, which is the high level of uncertainty. Let me quote some heart-wrenching comments from ILF users and their families. They illustrate the concerns out there very well:

“I am really terrified of losing my home and being forced into residential care…I have never been so worried and scared of my future without the ILF...We are locked in a prolonged period of insecurity of worrying what is going to happen. We are all only too aware of how hard strapped local authorities are and the temptation to use ILF monies for purposes other than care support for current ILF recipients…The current situation is greatly affecting our health with increased stress levels and sleepless nights a regular feature of our current lives. Not knowing what will happen, how this may affect the team of personal assistants we employ to support our daughter and whether we will receive any respite care once the fund closes in June only adds to our anxiety.”

Finally, a user said:

“I fear I will have my care time cut, and become a prisoner in my own home, unable to go to the toilet, go to bed, eat and drink when I choose—I fear my choice will be taken away. I fear being socially excluded and losing touch with my family and friends. I fear not being able to go to all the hospital appointments I have to attend. I fear I will lose my independence.”

That is the heart of the problem—loss of independence. The ILF has given severely disabled people real independence in their lives. At this point of change, and despite all the assurances that there have been in the system and the genuine messages of support from all the authorities, that concern is still very much there, and what is happening at the moment has not allayed the concern.

As those fears and worries illustrate, there is a real danger that attempts to save some money in one area, the ILF, will end up costing the state more in another area—the NHS. During the election campaign, when asked directly by one of the ILF recipients, the Chancellor of the Exchequer insisted that the Government would transfer all the ILF money and that there would be no cuts in their budgets. When pressed further, he made a commitment that money would be there in future years. So the Chancellor, who has been making the news today, is on the record on this issue. It is the duty of the House and the Minister to ensure that he keeps his word, so my questions to the Minister are as follows.

First, in the light of that, will the Minister discuss with the Chancellor how he intends to deliver on those promises, and will he report back to Parliament on the Chancellor’s response? Secondly, will the Minister be in contact with the 78% of local authorities that have said either that they will not ring-fence the money or that they are not sure whether they will ring-fence it, and are therefore not delivering on the Chancellor’s promise, and will he take steps to ensure that they do deliver on it? Thirdly, will he ask local authorities to report to him on what contact they have had with ILF users in their area and what feedback they have received from them in relation to satisfaction with the transfer? Finally, will the Minister make a commitment today to report back to the House in a year’s time on the impact of the transfer of the ILF to local authorities on the lives and wellbeing of recipients?

[The Parliamentary Under-Secretary of State for Work and Pensions (Justin Tomlinson)]

It is a pleasure to serve under your chairmanship, Mr Howarth. I thank the hon. Member for Scunthorpe (Nic Dakin) for calling this debate. It is of great interest to a number of people.

I recognise the valuable role that the independent living fund has played in enabling severely disabled people to live independently over the last 27 years. The ILF was created in 1988 as a transitional arrangement to mitigate the impact of the end of domestic assistance allowances when supplementary benefit was replaced with income support. The fund was established for a maximum of five years as a charitable trust to make payments to people on low incomes who had to pay for personal care. It was expected to support about 300 people. At that time, there was no clear legal provision for local authorities to make such payments.

The original ILF charitable trust ran until 1992, when it was closed to new applications. A new extension fund was created in 1993 to receive new applicants, and the two funds ran in parallel until 2007, when they were amalgamated. Following a trustee decision temporarily to cease taking new applications, the fund was closed to new users permanently in December 2010.

The decision to close the ILF completely, which was announced in a written ministerial statement on 6 March 2014, followed careful consideration of the implications of a Court of Appeal judgment handed down in November 2013. The decision was based on new evidence and a new equality analysis, and reflected those changes.

I understand and acknowledge the depth of the concern shared by many former ILF users about its closure and the impact of that. It was incredibly important to the users. Human nature does not like change, but when it is something so important to someone’s independence, I absolutely get the strength of feeling. However, it was no longer appropriate to continue to fund care and support needs through a discretionary trust operating outside the mainstream system. The mainstream adult social care system has undergone radical changes since the ILF was established. The introduction of the Care Act 2014 in England means that the key features of ILF support, which contributed to its success—personalisation, inclusion, choice and control—are now part of the mainstream adult social care system. Broadly similar legislation has already been introduced in Scotland and will come into force in Wales during 2015-16.

Local authorities themselves have a statutory duty to assess and fund the eligible care needs of disabled people, and 94% of all former ILF users already received a local authority contribution to their care and support. Transferring full responsibility for adult care and support to local authorities ensures that the needs of all disabled people will be met within a single care and support system, thereby simplifying arrangements.

[Nic Dakin]

The Minister is right to draw attention to the fact that many users have received support from the local authority and the ILF. One reason why they are very concerned is that the ILF’s approach has been, they tell me, very enabling—allowing them to do things—whereas the approach of local authorities over the years has been very much to try to save money and to push them backwards. That is one of the cultural things as well as real things that is adding to the alarm that they feel at the moment.

[Justin Tomlinson]

I thank the hon. Gentleman for that intervention. I understand that point. I will come on to the funding that we have passported over, but I understand the point about the change in the system. I was surprised that the figure was as high as 94%. There is that point about change, but the vast majority already had some contribution from the local authority at that point.

At the point of closure, there were 16,000 users of the ILF, compared with 1.3 million users of adult social care in England alone. Transferring full responsibility for ILF users and amalgamating the funding with adult social care will ensure that support for disabled people is delivered consistently and effectively. As I said, the decision to close the ILF, announced in a written ministerial statement, followed careful consideration of the implications of a Court of Appeal judgment handed down in November 2013.

The current position is that the ILF closed on 30 June and full funding for the remainder of the financial year has been transferred to local authorities in England and the devolved Administrations in Scotland and Wales. Local authorities in England now take full responsibility for former ILF users living here. I believe that local communities are best placed to make decisions about how to use funding to support members of their community and that local authorities should have the flexibility to decide how best to provide funding and support at local level.

Scotland and Wales have also now taken full responsibility for the care and support of former ILF users living there. Scotland has decided to create a new organisation to manage the transferred funding for former users, and in Wales the funding has transferred to local authorities to administer while the Welsh Government decide what course of action to take in the longer term. Northern Ireland has always funded support for ILF users living there and continues to do so, but it has asked the Scottish Government to administer this funding on its behalf.

As part of the 2013 spending review, it was announced that local authorities in England and the devolved Administrations in Scotland and Wales would be fully funded in 2015-16 to meet their additional responsibilities towards former ILF users. A total of £262 million has been made available for ILF users in 2015-16. That amount was based on very accurate forecasts by the ILF and is the same amount that would have been available had the ILF remained open.

Since the ILF was closed to new applicants in 2010, the number of users has reduced year on year, meaning that spending has also decreased. Funding for 2015-16 reflects projected reductions in the number of users between 2014-15 and 2015-16. It is therefore not a cut in the level of available funding.

Funding has been distributed among England, Scotland and Wales in a way that reflects expenditure patterns at the point of closure, with funding in England being allocated to individual local authorities on the same basis. Before its closure, the ILF provided each local authority in England with detailed schedules setting out the allocated funding at individual level, ensuring that every authority has received accurate information about the level of support previously provided to each user by the ILF. Final analysis from the ILF shows that the funding allocated to local authorities in England will be sufficient to ensure that existing commitments to former ILF users can be paid in full for the remainder of the year.

[Nic Dakin]

I thank the Minister for his description of what has happened. Will he take steps to make sure that the funding, which he has said is definitely there, reaches ILF users?

[Justin Tomlinson]

I am coming to that. I am just setting the background, after which I will talk about the action that is being taken.

The potential implications of closing the ILF were set out in the equality analysis in very clear terms, focusing on the likely impact of the proposed policy on those with a protected characteristic and concentrating on assessing the impact of closure on people with the protected characteristic of disability and, in particular, users of the ILF. The equality analysis considered a worst-case scenario, even if it was not certain that it would happen, separately under each limb of the public sector equality duty.

In addition, we have made a commitment, as part of the equality analysis, to monitor the impact of the closure of the ILF on former users. I believe that that will be welcomed by all. A sample of former ILF users have already agreed to take part, and we have started planning the research, which will be completed before the end of the 2015-16 financial year.

Before the closure of the ILF, the Government worked closely with the ILF in partnership with ILF users, local authorities in England and the devolved Administrations to ensure that they benefited from a programme of extensive transitional support. As part of that support, all former ILF users received a detailed support plan setting out the level of support and the outcomes secured under their ILF award.

The information was shared with local authorities, and the devolved Governments all had access to the data transferred to them prior to closure. In addition, the ILF engaged directly with all authorities involved in the transfer of user care and support in 2015, and it held a series of conferences in October 2014 to provide local authorities with up-to-date information. One-to-one discussions were held with all 151 local authorities at those events. Similar events were held in Wales, and the ILF has worked closely with the Scottish Government to ensure a smooth transfer for all users across Great Britain.

The Department and I have worked closely with the Department of Health, the ILF and interested parties, including a number of significant stakeholder groups, to develop additional guidance for local authorities. We did so in recognition of the fact that, as has been highlighted, not all local authorities immediately displayed full confidence in the arrangements. That included points raised in earlier debates on the subject, which is why we developed additional guidance to ensure that we were prepared for the transfer of former ILF recipients to sole local authority care, underpinned by a new chapter in the Care Act 2014 statutory guidance. That will help to inform local authorities in the transfer of former ILF users to the adult social care system in England.

I have recently written to my counterparts in the Department of Health and the Department for Communities and Local Government, as well as to the Chief Secretary to the Treasury, because I want to ensure that the needs of all former ILF users continue to be taken into account. I have received assurances from the Department of Health and DCLG that future funding for former ILF users will be considered at the next spending review. It may be helpful to highlight the positive remarks of the Chancellor during the election, which are formally on record.

In addition, DCLG has written to each local authority that has former ILF users to draw attention to the agreed code of practice, which will be supported by the new guidance. In the meetings and conversations I have had with the Departments, it has been clear that they absolutely understand that and there is collective support for it. Ongoing support from my officials and me will continue, to ensure that we monitor what is happening and keep a close eye on the situation.

[Justin Tomlinson]

We all have constituents who would echo those words, which is why we are working closely with the Departments.

[Nic Dakin]

The Minister is being generous in giving way yet again. It is clear to me that constituents are anxious because they do not know what will happen in the future. Can anything be done to give people greater longevity of certainty—more than just one year?