HC Deb 12 December 1990 vol 182 cc1085-92

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Lightbown]

12.22 am
Mr. John McFall (Dumbarton)

It is my privilege and pleasure to speak on behalf of two of my constituents with regard to the independent living fund. That fund has been a victim of its own success. I refer the Minister to the ninth report of the Social Services Committee on community care. I echo what the Select Committee says in paragraphs 62 to 88—that the Government have not fully appreciated the innovation of the independent living fund in giving some disabled people and their families the resources to build up their own care packages. I ask the Minister to endorse what is said in the ninth report by establishing the ILF as an independent body.

Disabled people are now asserting their right to live as equal and independent citizens in the community, but to be independent and equal requires opportunity and resources. Since 1988, the independent living fund has given people the opportunity and the resources to live independently within the community, to participate on an equal basis and to contribute both economically and socially to the life of the community. Not only has the ILF provided the opportunity and resources for independent living; many will also testify to the undoubted fact that the ILF has also secured the preservation of their lives and liberty and has enabled them to gain much happiness, all of which is considered to be essential for a good quality of life.

However, the independent living fund is now doomed to close in 1992. I am armed with a petition signed by 4,000 of my constituents which expresses their deep concern about the future of the ILF. Those 4,000 citizens believe that such moneys to maintain severely disabled people in the community should be given as of right to those who need it under the social security system to ensure uniform provision throughout the United Kingdom.

To date, the Minister and the Government have been deaf to that suggestion, so my constituents decided to arrange this petition and to present it to me after seeing the plight of Jim and Monica Elder Woodward. The main force behind the petition was a lady called Betty Campbell of Dalvait road, Balloch, in my constituency. She was ably assisted by Brenda Newton of Halketh crescent. Alexandria, who was equally determined that these signatures should be presented to Parliament, and that I should do that on their behalf. I have received tremendous support from the workers at factories in my constituency, from the Polaroid factory, from the Vale of Leven district hospital, from the Whisky Bonds, and from post offices and general practitioners' surgeries. The parish priest at the church that Monica Elder Woodward attends has also given his support.

All those people are urging the Minister to reconsider because, without the independent living fund, more than 6,000 people would have to leave their own communities and live in socially isolated residential care at a cost of between £250 and £1,000 per week. The average cost to the ILF of providing help is £72. I quote that figure from the Minister's comments in Committee yesterday. Therefore, even if the Minister disregards the humanitarian case, there is a sound economic case for continuing the ILF. As the Minister said yesterday: That is a clearly good value for money, as an alternative to someone going into institutional care."—[Official Report, Standing Committee E, 11 December 1990; c. 62.]

With the ILF, disabled people can organise their own care plans exactly to their needs. The care plan is developed with them, and they have control of the decision-making process. The care plans are also more appropriate and flexible than most local authority services, so disabled people can do more what they would like to do. They can mix with others of their choosing or enjoy their own company. The choice is theirs. Surely that is an eminently sensible Tory principle.

That new approach has been possible because, since 1988, frightened at the chaos that ensued after the social security changes, the Department worked with the Disablement Income Group to set up the independent living fund as a charity. The Minister knows that the ILF is not perfect, and DIG has told me that itself. Although the charity expedites independent living, it is nonetheless a charity and, because of those nuances, it cannot treat its recipients as equals. Disabled people regard that as the downside of the ILF. As its war cry states, they want "Rights, not Charity."

However, the Government now want to close the ILF and to transfer the responsibility to local authorities through the proposed community care legislation. That is a real cheek, from a Government who have passed 40 separate pieces of legislation against local authorities and who have tied and buckled them. The Government benignly say that local authorities will look after community care. That is nothing less than abdication by the Government, and it will have a disastrous effect on those affected.

As I have said, Jim and Monica Elder Woodward are a severely disabled husband and wife who live in my constituency and who are beneficiaries of the independent living fund. The husband works full time for social services, helping other disabled people. He has cerebral palsy; nevertheless, he is contributing economically, socially and politically to the life of his community. He is paying his taxes—even the poll tax, despite the fact that the rates recognised the additional costs and needs of disability, which the present insensitive levy does not.

The wife, Monica, has multiple sclerosis and is even more severely disabled. Her case was on Scottish Television tonight, when every viewer saw exactly how disabled she was and how dependent she was on the ILF. She has been given many electronic aids to reading and writing by the Open university because it recognises her brilliant mathematical skills. She already has two degrees —one in architecture, the other in social sciences. She is also a qualified social worker, having had responsibility for the development of services for disabled people in an English local authority.

Together, they enjoy music, the theatre and the arts. Together, they reinforce and respect each other's separate interests. The husband's interest is local and Scottish history. He is no Christy Nolan, but he also tries to write. His first book about disability will be published soon. His wife unwinds from mathematical problems by reading the New Scientist. Together, they make a fine, happy, loving couple.

But all that is possible only through a network of devoted helpers who come in at different times of the day to accomplish different tasks, from shopping to toileting —the network being wholly dependent on the ILF. There is no guarantee that the local authority will take on the ILF's commitment of £170 a week to support the two of them, and that is the core of their concern. They have made a pact: if one goes into a residential home, the other will give up work, the house and the dog and follow, just to be together.

That is what the Government are driving people to consider seriously. That is why I am armed with 4,000 signatures from my constituency, spontaneously given by people who are concerned about the likes of Jim and Monica Elder Woodward. Such people have to consider giving up home, family and work, to live a life in sterile institutionalisation. They have a good future together in the community, if they have the resources to secure their support network. Without those resources, their future lies with aseptic hospital wards or barns of "homes for the incurable".

The ILF, this life-saving, life-enhancing system of community support for so many, and potentially so many more, is a victim of its success. It warranted only one paragraph in the White Paper on community care. It was dismissed without a thought as the responsibility of local government. Jim and Monica Elder Woodward want to eliminate the historical tendency for disabled people to be regarded as mere objects of charity.

Disability is a social phenomenon, created by the way in which the environment is built, by attitudes shown towards disabled people, by the structure of organisations, as well as by organisational behaviour. Disabled people are disabled not because they have cerebral palsy or MS, but by steps and doorways, by people saying, "No." and, "Go away," and by the inflexible systems and rules which overlook their specific needs. It is society that disables, not the medical condition. Surely it is up to society and its representatives in power, the Government, to break down those barriers and let disabled people in. All they are asking for are the tools to break down these barriers to an independent life in the community.

We in the House have begun by giving them the attendance allowance and mobility allowance. They are being combined in the Government's Bill to establish the disability living allowance, but it will continue the two-tier system of day and night, and day-only attendance allowance. In addition, a new lower rate of £10 will be introduced for those who hitherto did not need enough care to be eligible for the day-only allowance.

The ILF, however, is used to assess exact needs and to pay accordingly. In its present form, it has to operate a means test to ascertain the contribution that the individual has made. Nevertheless, the assessment is based on the practical needs of the individual and the estimated cost of satisfying them, and the cost will vary from individual to individual and from geographic region to region. These factors are not taken into account within the new disability living allowance. Instead of scrapping the uncharitable benefits of the ILF, I urge the Minister to integrate the new disability living allowance with the ILF system of independent living support.

For dismal reading, I refer to the Minister's final remarks in Committee yesterday. He said: We should still look to the local authorities to undertake the vast majority of cases. Shortly after that, he said: We must consider the situation as we approach 1993. I should be extremely reluctant to envisage a situation in which a great gap appeared … disabled people were anxious"— the Minister is here referring to my remarks— to have an idea about the arrangements as soon as possible. I am conscious of that and would want to respond to that point but cannot do so this morning."—[Official Report, Standing Committee E, 11 December 1990, c. 63–4.]

Twenty-four hours have passed, and I ask the Minister to "respond to that point". I shall ask the Minister to do so when 48 hours have passed. I shall ask him to respond when four weeks have passed. The issue will not disappear. I am speaking on behalf of many disabled people who want their time to come now. The Minister's statements in Committee, which I have quoted, are insufficient and insulting as they stand. I ask the right hon. Gentleman to make a positive statement tonight. Let him understand that the issue will not go away.

12.36 am
The Minister for Social Security and Disabled People (Mr. Nicholas Scott)

Despite the somewhat dramatic urgings of the hon. Member for Dumbarton (Mr. McFall), I welcome the opportunity to advance to a wider forum than that which was available to me yesterday in Committee—I suppose that there were more people assembled yesterday in Committee than there are present in the House tonight, but my remarks now might receive more attention than those made yesterday—some of the arguments which I deployed in response to an amendment which was proposed to the Committee considering the Disability Living Allowance and Disability Working Allowance Bill. If, however, the hon. Gentleman expects me within little more than 24 hours to go further than I went yesterday, he will be disappointed.

I object in a delicate sense to some of the comments of the hon. Member for Dumbarton which implied that the Government are less caring and less sensitive to the needs of disabled people than right hon. and hon. Members who represent the Opposition. We have demonstrated our commitment. The House will, perhaps, be weary of hearing the extent to which we have improved the totality of financial resources available to meet the needs of the long-term sick and disabled during our period of office. The real annual rate of increase is substantially in excess of anything that was achieved by our predecessors—the Labour Government—and the same can be said of the way in which we have extended the scope of, and made more flexible, the care that we give to the long-term sick and disabled.

We are discussing a Bill in Committee that will bring two new important benefits to meet the needs of disabled people. I am sure that in 1993, as planned, we shall be moving to a system of community care that will be much more locally responsive to the needs of the disabled. That is not a bad record, and nor is it a bad prospect when it comes to meeting the needs of the disabled.

I understand that Mr. and Mrs. Elder Woodward are not complaining, and did not complain to the hon. Member for Dumbarton, about the provision that is being made for them through the independent living fund I understand that their concern is about the future of the scheme. I do not know what it was that led the hon. Gentleman to say—I assume that I heard him aright—that the ILF was doomed to end in 1992. I have never said that. To my knowledge, none of my colleagues, and certainly no one from the Treasury Bench, has suggested that the ILF is doomed to end in 1992.

Mr. McFall

Am I correct in thinking that the ILF has a five-year life span and therefore is not its future after 1992 in jeopardy? Can the Minister confirm that it will continue after 1992?

Mr. Scott

The period 1988 to 1992 is four years, not five. Therefore, the independent living fund's current trust deed will run out in June 1993 and that will be some months after the introduction of community care in April 1993. The hon. Gentleman's reference to 1992 may have been a slip of the tongue. The trust actually has a life until mid-1993 and that is beyond the time when we plan to introduce community care.

It might be worthwhile if I remind the House and perhaps a wider audience of the origins of the independent living fund. It was established by the then Department of Health and Social Security in co-operation with the Disablement Income Group and DIG (Scotland). It was set up partly in recognition of the fact that, after the 1988 social security reforms, severely disabled people would no longer be able to claim additional requirements payments, in particular for domestic support.

It was felt that some of the severely disabled people on income support would not be adequately compensated for that loss by the disability premiums that were to be available under the new income support system. At the same time, it was decided that it was necessary to provide help not only with domestic assistance, but also with personal care in order, as the hon. Gentleman said, to enable as many severely disabled people as possible not to have to enter institutional care, but to allow them to sustain their independence within their own homes with the support of their families or local communities. It was hoped that as many as possible would be able to achieve that aim with which all hon. Members would be sympathetic.

The fund, with cases examined individually under the guidance of independent trustees, offered an opportunity to deal flexibly and sensitively with that small group of people in a way that simply was not possible under the mainstream benefit system.

As I understood it, the hon. Gentleman was advocating that the ILF, either in the near future or certainly before its life expired, should be incorporated into the disability living allowance and, in effect, placed on a statutory basis. As I argued in Standing Committee E yesterday, I do not believe that that would be sensible or practical or would have a chance of meeting the needs of disabled people either as they are met presently under the ILF or will be met under the terms of the community care policy after 1993.

I will explain why I believe that by referring to an example I gave to the Standing Committee yesterday. The fund copes with about 7,000 individuals in a sensitive and flexible manner. We must set that against nearly 1 million people who, by 1992 or 1993, would be receiving either attendance allowance or the care component of the disability living allowance. There are in essence two concepts that do not come together in any real way. First, there is the statutory provision of attendance allowance —and the care component in due course of DLA—which gives a broad level of support as of right to a large number of people, as I said, about 1 million. That does not attempt to reflect the actual costs of disability of any individual, but it recognises that extra costs arise from particular levels of disability and that the state should recognise that and make payment in respect of it.

Secondly, against that, the independent living fund deals with a fraction of that number—as I said, about 7,000. It deals with them with discretion in a way that reflects the care needs and costs of the individuals or couples concerned. It is flexible, sympathetic and discretionary and the ILF trustees, staff and social workers work expertly on their behalf in a way in which no Department of Social Security office—there are 500 in the country—could conceivably respond to those needs.

Whatever differences we may have about the future, I ask the hon. Gentleman to recognise that, to attempt to incorporate such specialised provision for a relatively small minority of severely disabled people into the generality of the social security system or the care component of DLA, which is obviously a fraction of that, would simply not meet the needs of disabled people. Having served in a previous incarnation, Mr. Deputy Speaker, in the former Department of Health and Social Security, you will recognise the difficulties of drafting regulations that could reflect the flexibility that has been shown by the trustees and staff of the independent living fund. The hon. Gentleman is going up a false alley in making his suggestions. Perhaps he wants to look forward to a time when we have a long-term and developing role for the independent living fund. However, I take issue with his suggestion that, in some way, the Government are not fulfilling their duty to the fund.

Having returned from across the water, when I first confronted the situation that was to follow the 1988 reforms, and I could see a gap opening, I went to the then Chief Secretary to the Treasury, my right hon. Friend the Prime Minister, and asked him for some money for that purpose. We set up the fund with £5 million. In the first year, only £1 million was spent on the independent living fund. Now, only three years later, we are making provision in the current year for £32 million for the fund, and £62 million next year. We have recognised that there is a need, and we have been able to respond in that dramatically increased way to meet it.

It has become increasingly clear that it is more difficult for the trustees, staff and others involved with the independent living fund to meet the burdens placed upon them by the substantial increase in the caseload. If the hon. Gentleman will look back fairly, he will note that the Government, voluntary organisations and so on were dealing with a few hundred people. The number has turned out to be a few thousand, and, as the word has got around, it looks set to increase further as the months and years go by. We have made additional provision, but we must be prepared to look ahead to what the long-term pattern of care should be.

It is worth registering the fact that the independent living fund is not the only source of help for disabled people. There also are flat-rate benefits within the social security system. There is already help from local authorities and health authorities. I suspect that some have been pushing some of what should be their caseload on to the shoulders of the independent living fund. Voluntary organisations, families, friends and so on could play their part in helping disabled people and provide the help that they need to maintain their independence. Also, some of the best provision is to be gained from a partnership between family, friends, community, and statutory, voluntary and other agencies. They can put together a comprehensive support package to enable individuals and couples to sustain their independence.

We have put forward proposals in our White Paper, "Caring for People", which, together with the National Health Service and Community Care Act 1990, set out the Government's policy framework for community care in the next decade and beyond. I do not want to go through that tonight, but we must accept two propositions: first, that the general social security system is not flexible or responsive enough to cope with the needs of that small group of people; secondly, that the number who are dependent upon support from the ILF is now growing to the extent that it is difficult for the ILF, the trustees, the staff and the social workers to bear the burden.

The sensible way forward, which is favoured by the Government, is for the decisions about support for such severely disabled people to be devolved to local level. There will be a transfer from the Department of Social Security, through the Department of the Environment, to local authorities to enable them to cope with those problems.

A local authority or a health authority should be able to assess the needs of individual disabled people in their locality. They could then decide on the care package that is needed to ensure that those individuals can maintain their independence in the community. The authorities should be financially neutral about such decisions so that there is no particular financial advantage to be gained from those decisions. That should be the best way to determine the matter.

As we approach 1993 and the implementation of care in the community policies, the ILF will still be going. It will, however, have built up a caseload that is substantially greater than the existing one. It is impossible to conceive that, on some particular date in 1993, the whole burden for the ILF will be transferred to local authorities. Some transitional period must be set and even a point at which some further cases are accepted.

In response to the hon. Gentleman's plea, may I say that it should be the proper expectation that, after a particular date, local authorities—with the support or otherwise of health authorities—should be able to assess the needs of individual disabled people to enable them to acquire independence. I also hope that some beneficiaries will be able to play a more active part in their care management. They should be able to assume responsibility for the day-to-day management of their carers—that has been a particular feature of the success of the ILF. Even though local authorities are unable to make cash payments in lieu of services, such responsibility would induce a great degree of choice. That is the best way forward on such a sensitive and difficult issue.

I look forward to sharing exchanges on this subject with the hon. Gentleman in the coming months.

Question put and agreed to.

Adjourned accordingly at eight minutes to One o'clock.