Disabled People (1986 Act) (Hansard, 2 May 1991)

§ Mr. Tom Clarke (Monklands, West)

I am grateful to you, Mr. Speaker, for the opportunity for this debate, albeit short and inadequate, on a very important subject. I am grateful also to the Minister for Health for her presence.

The House will know that there is great concern among the sponsors of the Disabled Persons (Services, Consultation and Representation) Act 1986 about the Government announcement that sections 1, 2 and 3 will not now be implemented, which comes after the earlier decision not to implement for the time being section 7.

The Minister for Health will know that I certainly was not happy—and I know that this is true of a number of my right hon. and hon. Friends—about the manner of the announcement. Although I do not intend to dwell on it, even if the Prime Minister had responded to two planted questions in the way that many of us believe took place, I do not think that that was the way to deal with an Act which managed to get on the statute book because of the spirit of all-party support, which I do not think the announcement and the manner in which it was done reflected. Certainly there were two questions—one from the hon. Member for Isle of Wight (Mr. Field) and one from the hon. Member for Cannock and Burntwood (Mr. Howarth). I am bound to say that at one stage I was going to offer each of them a pint to produce a question on this subject in this Parliament, but I think that that would have been unfair, and my reputation for meanness would have remained intact. But I am not sure that that is the best way to deal with a subject of this kind.

There is extreme anger and disappointment among 6.5 million disabled people in this country and their advocates and carers, who for the last five or six years have looked forward to the implementation of these sections and who are now profoundly hurt and disappointed. I have received petitions, which I hope to present next week, on behalf of some of the villagers in my own constituency, and in the town of Coatbridge. People there have been following our procedures, and they cannot understand how we can be so cynical as to put on record such an important Act and build up the hopes of people with disabilities and then later simply say that these will not be implemented.

In case the House thinks that I have orchestrated these petitions, may I say that I have received letters from many parts of the country, including yesterday two letters from the Isle of Wight, which were quite unsolicited. That is an indication that there are very strong feelings on this issue. Those feelings are reflected in the views of voluntary organisations—I am sure that they have been made known to the hon. Lady—such as the Spastics Society, MIND and the Act Now group, which involves about 40 organisations concerned with disability.

Yesterday, I heard a very eloquent but angry speech by Sir Brian Rix on behalf of MENCAP. He fully understands the importance of the decision not to implement these sections. That anger is shared by local authorities. I speak now after 10 o'clock, and I do not know what their political complexions are, but they participated in trying to bring this legislation into being through consultation after consultation with Minister 527 after Minister, and they felt that the Government were sincere in saying, as they did, that these sections would be implemented.

I do not believe that the House has received an explanation for an extraordinary decision by the Government. Certainly, in the written replies which the hon. Lady has published, we are told that these sections have been overtaken by the Government's own National Health Service and Community Care Act 1990 and even by the Children Act 1989. I find that quite astonishing. I followed the debates on both those Acts very carefully and served on both the Standing Committees, and I recall nothing specific about advocacy and representation—certainly not in the Children Act.

I have met nobody in the social services and social work in Scotland in recent days who takes the view that Government legislation in any sense comes anywhere near what the 1986 Act was attempting to achieve in terms of advocacy, representation and assessment.

What the Government have done means even more dependence on the complaints procedure, but we are supposed to be talking about community care, a partnership. I understand that the hon. Lady was speaking about that very issue on the BBC a few minutes ago.

But there is not a partnership when entitlement that is provided for in the 1986 Act is not provided for in subsequent legislation. There is no prospect of partnership when the Government deny what was clearly identified as an opportunity for people to seek their rights in terms of advocacy and representation. Where those do not exist, I do not see how we can have the kind of partnership to which the hon. Lady has referred.

Community Care, which has played a very important role in respect of these matters, published a leader headed "Final Solution?" It said: section 50 of the Community Care Act (to which Mrs. Bottomley specifically referred) relates almost entirely to the complaints procedure which local authorities must have in place by April. The Disabled Persons Act went far beyond this. It recognised that disabled people might need an advocate at any stage in their dealings with the Social Services Department, to help them put their views and case. The existence of a complaints procedure is surely a poor substitute for the wide-ranging, one-to-one advocacy envisaged under the 1986 Act. Those are important views. However, perhaps much more important than even these considered opinions are the views of the organisations of and for people with disabilities. For example, the Royal Association for Disability and Rehabilitation said this: The National Health Service and Community Care Act does not give disabled people the absolute right to authorised representatives or the absolute right to make known their needs before an assessment is carried out, to know what the social services will provide to meet those needs, or why they will not meet needs, and the right to a review of their assessment. That is the difference between the Government's legislation and the provisions of the 1986 Act.

These views were not expressed by a single, albeit important, organisation; they are shared by Age Concern—to which I shall come in a moment—Deaf Accord, National Citizens Advocacy, south Birmingham area, and many other advocacy groups, National Citizens Advocacy, the Spastics Society, MENCAP, the Scottish Care in the Community Group, the Scottish Society for the Mentally Handicapped and many other organisations. 528 It is at our peril that we ignore such important views—the views of people with disabilities and of those who care for them.

It is important that we should place on record the views of a number of organisations, if only because they are representative. In a letter to me, Age Concern said: As you know, Age Concern England shares your disappointment at the Government's decision not to implement these sections. Advocacy schemes have clearly demonstrated how authorised representatives can help frail, chronically sick and disabled or confused older people by representing their wishes and interests accurately and sensitively … The Government have put financial constraints before the rights of disabled older people to make their wishes known and to have a guarantee that the services they receive are those which best meet their needs. Deaf Accord said this: Deaf Accord is extremely upset and worried about the Government's decision not to implement sections, 1, 2 and 3 of the Disabled Persons Act. The hon. Lady may have thought the other day that I was being a bit provocative when I responded to her comment that the lion's share of the Act had been implemented. You may recall, Mr. Speaker, that you had to keep us in order. The point that I am now making is that, in the absence of advocacy, the Act remains a lion without teeth. Of course I welcome those sections that have been implemented, and do not wish to diminish the importance of the legislation. But here we have Deaf Accord telling us that one of the very important sections to have been implemented—warmly welcomed by that organisation and by me—is weakened because of the absence of advocacy. Deaf Accord goes on to say: Section 3 includes the provision of any services that may be necessary if a disabled person (or their authorised representative) is unable to communicate orally or in writing. The implementation of this part of the Act is absolutely essential for many profoundly deaf people who can only communicate in Sign language. Without the provision of a Sign language interpreter many deaf people are denied the right to participate in their assessment. This means, for example, that deaf school leavers do not have the right to an interpreter when being assessed under Section 5 of the Act. National Citizens Advocacy, south Birmingham area, said: the dropping of these important sections has angered and frustrated us all within the Citizen Advocacy movement … However, whether it is through Citizen Advocacy, Self-Advocacy groups or some form of paid representation—what is vitally important must be that the principle of authorised representation is recognised and established in law, as of course it is in many other countries. National Citizens Advocacy said: Mrs. Bottomley stated that the Department is giving financial support to a number of voluntary organisations which assist disabled people through the provision of advocates. This number is very small indeed, and in some cases health authority grants to citizen advocacy schemes have not been granted or renewed … This situation is full of irony, and will have tragic consequences for disabled people. Finally—while I am quoting the strongly held and considered views of organisations involved in disability—let me point out that MIND drew attention to the Law Commission's consultation paper, stating: The Law Commission's consultation paper No. 119 entitled 'Mentally Incapacitated Adults and Decision Making: an Overview' recognises the necessity for a scheme 'to avoid the gaps, fragmentation and confusion of responsibility which exists under the present law' … It is our view that the government estimated £18 million to establish and run a formal system of authorised representatives would be a small price to pay for guaranteeing a basic human right. 529 The other day, the Minister and her colleague, the Parliamentary Under-Secretary of State for Health—the hon. Member for Loughborough (Mr. Dorrell)—answered questions that I had tabled, hopefully, in preparation for tonight's debate. As can be seen from columns 42 and 43 of the Official Report of 29 April, the Ministers first had to answer my question about the meaning of the 1986 Act in terms of representation and advocacy and the number of people involved. We observed a clear distinction between the precise reply that the hon. Member for Loughborough was able to give and the vague reply that the hon. Lady gave; not because that was what she wanted to do, but because she was clearly basing her reply on the Government's legislation—which is itself very vague, and certainly not nearly as detailed as the 1986 Act in regard to the points with which I am dealing.

The Parliamentary Under-Secretary of State—the hon. Member for Loughborough—referred to the number of people with learning difficulties. He said that 25 per cent. would require representation—people with physical disabilities, elderly disabled people, people with dementia and those with sensory impairment. He actually gave a figure—which the hon. Lady was not able to do on behalf of the Government. That figure—144,000—does not seem much when we remember that there are 6–5 million people with disabilities in this country. The House of Commons recognised that, as did the other place when it passed the Act unanimously.

What we learn from the answers to those questions is that it would cost £40 for each authorised representative each week—about 75p per person, which is surely not a colossal amount. Representation is a right, especially if we mean what we say about community care. Time after time—as I have been reminded this week—decisions are being made for people with disabilities, often by local authorities and bureaucrats. Advocacy would have given those people access to the decision-making process, which I believe has been denied to many people, and will continue to be as long as the relevant sections of the Act remain unimplemented.

Under the 1990 Act, assessments will be made only when a local authority decides that it "appears" necessary. Surely community care should go well beyond that, and involve the rights and the needs of the client and the services that should be provided, with proper assessment involving advocates where they are in place. The absence of that means that decisions about the quality of life for many of our people, for the elderly, including disabled elderly people, for the physically disabled, for carers and for advocates themselves, are being taken by people who happen to have power, a power which is not always shared or used in the best interests of the consumer.

That is why I believe that the Select Committee on Social Services was firm in recommending to the House that, if we genuinely believe in community care in practice, sections 1, 2 and 3 of the 1986 Act, as well as section 7, which deals with persons being discharged from long-stay psychiatric hospitals, often into the community without any preparation being made for them, are absolutely vital if we are to begin to address the problems that are out there in the community.

In recent days, since we apparently take the view that people with disabilities should have a say, I thought that 530 I would take the opportunity to listen to what some advocates have to say, and I shall conclude on that note. I am sure that the Minister will curb her impatience; it will not take too long.

I visited Southwark disablement association the day before yesterday, where I met a number of interesting and inspiring people such as Ben Clarke and John McGowan, but in particular I met a woman called Biray. She was in a wheelchair, and the head of a single-parent family with two children. She said that she went to her advocate, John—happily, advocacy exists there; the best practice that we want to see spread throughout the United Kingdom—who happened to be sitting in the room with us because she did not think that anyone listened to people such as her; she was just another person on whom sometimes people even hung up on on the telephone. She was wise to go to her advocate, because he managed to negotiate with the social security office, where it was discovered that she was being paid £16 less than her entitlement on income support. He was also able to ensure that she was put on the list for special housing in the docks area, much to her pleasure and to his.

It is interesting that her advocate was himself in a wheelchair, showing that advocacy can go far wider, involving self-advocacy as well as citizens' advocacy and professional advocacy, in order to give community care real meaning.

I met too in Islington Jean Willson, the chairman of Islington MENCAP. She has a daughter, Victoria, who is now 20, with severe learning and physical disabilities. After a lifetime of dedication from her mother, Victoria is now in her own little bungalow. But the kind of dedication that we see there would have been helped considerably by advocacy.

I end by referring to Mary Albert, and Gerald Coyle, in my constituency, to whom I have referred previously. The parents' commitment there to a young man with learning difficulties is colossal. They fervently hope that we mean what we say about advocacy, because they want to know what will happen to Gerald after they have gone. That is a question that many people have asked, but they will not get a response until we implement fully the sections that we are discussing.

§ The Minister for Health (Mrs. Virginia Bottomley)

I have listened with sympathy and considerable respect to the hon. Member for Monklands, West (Mr. Clarke), but in the examples that he gave at the end of his remarks he demonstrated so effectively the way in which the philosophy and thinking behind the 1986 Act are already being taken up and incorporated in good social services practice throughout the country.

I recognise that our decision not to implement those sections, at least for the time being, has caused considerable disappointment. The hon. Gentleman is reluctant to be persuaded that the provisions of the Disabled Persons (Services, Consultation and Representation) Act 1986, which are so dear to his heart, could be and have been overtaken by a major initiative mounted by this Government. In our implementation of care in the community, there is no doubt that the spirit and the principle of the 1986 Act have been developed and elaborated upon to ensure that the many frail, vulnerable 531 and disabled people in the community have their services provided in that spirit of partnership that has so shifted our thinking about the provision of support.

The programme "Does he take sugar?" has a message for us all. The principles enshrined in the 1986 Act have profoundly changed our views of the welfare state. We have moved away from the paternalistic provision of services to a spirit of partnership.

Many of the provisions of the 1986 Act have already been established. However, the hon. Gentleman wants us to move further and faster. Our community care reforms are the most fundamental and wide-ranging measures to be taken in the area for many years. I very much hope that the substantial benefits that they will bring to all those affected by aging or disability will receive wider recognition and understanding.

I hope that the hon. Gentleman will be able to harness the enthusiasm, lobbying and commitment of the many groups that have supported the 1986 Act and ensure that that energy is translated into support for the implementation of care in the community. As local authorities carry forward their community care plans and move forward with specific work on assessment and guidance to fully implement community care, I hope that they will have the active involvement of local voluntary organisations and the disabled themselves.

The hon. Gentleman is aware that the White Paper "Caring for People" makes it clear that we would not at the moment implement section 7 of the 1986 Act. That is partly because we have a major programme to provide support for the mentally ill in the community. The specific grant established on 1 April this year, resources amounting to £155 million over the next three years to provide support for the mentally ill and the establishment of care programmes with collaboration between health and local authorities to ensure that a group that both the hon. Gentleman and I would agree have not traditionally achieved the practical and effective support required in the community, will all make a substantial difference.

More recently, we reached a similar decision in respect of sections 1, 2 and 3 of the 1986 Act, which concern the appointments and rights of authorised representatives of disabled people and the rights of disabled people to make representations. I do not accept the hon. Gentleman's argument that the establishment of complaints procedures, a requirement from 1 April this year, does not make a significant difference to those receiving the services.

More fundamentally, it is a requirement that, in drawing up community care plans, users' and carers' interests should be considered. Furthermore, in the establishment of assessment procedures, where we have already produced the policy guidance and where we will now produce the practice guidance, there is clearly a role to promote and encourage advocacy schemes.

We help to fund the National Citizens Advocacy, Skills for People, Barriers into Action and the Royal National Institute for the Deaf in carrying forward their guidance and support to local authorities in implementing advocacy schemes. I was interested to hear the hon. Gentleman's example of an advocacy arrangement that he witnessed yesterday. I was present in my constituency last week to see the initiation of the commissioner of social service users and carers working to promote advocacy schemes.

532 I am more than happy to meet the hon. Gentleman and others concerned about how we can use the spirit of those principles, in identifying, in the practice guidance that we are now preparing on assessment, how we can further encourage and promote schemes that we both agree should ensure that the wishes, interests and needs of the user are properly recognised and understood.

We did not take the view that this was the time to introduce a statutory, formal, bureaucratic, uniform administrative procedure. It is not only a question of costs, which I think the hon. Gentleman will agree are notoriously difficult to assess: much more that, when there is such a great movement to the full implementation of community care, it is not the time statutorily to introduce this part of the hon. Gentleman's Act. I do not want him to underestimate the impact that his Act has had on our change of thinking and on the work being done to improve services for those with disabilities. The range of sections, and the work that is continuing as a result of them, is legion.

There has been a report to Parliament on the care in the community of the mentally ill and the mentally handicapped. Earlier this year, we had reports from the social services inspectorate about the work being done to ensure that those leaving school were properly prepared for the community. The Children Act 1989 ensures that, for the first time, children with disabilities will be under the umbrella of children's legislation, and their needs and interests recognised.

We are aware of the importance of information schemes. Only recently we helped to fund the national disability information project, so that those with disabilities have knowledge of and access to the range of resources in the community. There has been a profound culture change in this country, so that the needs of disabled people and all those who would benefit from community care are now viewed in a profoundly different way.

I should regret it if the hon. Gentleman felt that there was any discourtesy in the way in which the decisions have been announced. That was not the intention of any of the Ministers involved. I wish to make it clear that the all-party disablement group, the Act Now group, and the many voluntary organisations that have made a magnificent contribution to advancing improved care for the disabled, will continue to have an open door to my Department. We want to ensure that all the principles in the hon. Gentleman's Act are developed in our community care implementation. I call on him and on all the groups with which he works to work with us to ensure that community care is a success. As we turn policy into practice, we want to ensure that those larger groups of people in need of support in the community receive the help, partnership and assistance that is so important.

We have a major implementation programme; we have the largest increase in spending on social service departments for 15 years; we have a raft of policy guidance. We need the good will of the hon. Gentleman and everyone else to ensure that those policies are the success that he and I want them to be.