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7.14 pm
Mr. Peter Thurnham (Bolton, North-East): I am delighted to support this important Bill, which represents a breakthrough in care for disabled people. I congratulate all the people who, over the years, have campaigned in the House, in the other place and outside on the success
of these measures. I congratulate the Disablement Income Group and other lobby groups that have campaigned for so long, the hon. Member for Mid-Kent (Mr. Rowe), who has been campaigning for more than six years, and Lord McColl in the other place, who has been pressing for more than three years. I have supported the hon. Member for Stratford-on-Avon (Mr. Howarth) in delegations to the Department of Health to press for these measures.
I congratulate the Minister because he has achieved a Government U-turn and overcome the ideology of the Treasury mandarins. This is an important breakthrough because, in effect, it establishes a decentralisation of the welfare state and allows local authorities to make discretionary cash payments within the constraint of an overall financial budget. We may view it as a model for ways in which the welfare state could develop.
The person who deserves the greatest recognition for his achievement is the right hon. Member for Chelsea(Sir N. Scott). The independent living fund was the pioneering achievement and showed how disabled people could manage their care so well. That laid the foundation for the schemes in many local authorities, and for the Bill.
The independent living fund showed how successful such schemes could be. I was amazed at the report entitled "Cashing in on Independence" produced a year or two ago by the Policy Studies Institute. It shows the extent of those benefits. It states:
That is a massive increase in value for money. I am sorry only that the Government seem to wish to restrict benefits of that magnitude.
Cash benefits are not the only benefits. Others include the increase in control by service users, greater reliability, flexibility and better personal relationships that develop through being able to choose and make decisions.All those are massive benefits, and we should not restrict them.
I am surprised that the Minister seems to have given in to the Treasury mandarins in that respect. There is no purpose in having any restrictions. Let us just scrap them. Why should 65-year-olds be denied those benefits? They have had a lifetime's experience of managing their lives, so surely they can manage care packages as well as anyone. Often, mentally handicapped people need the flexibility of those services. Obviously, their carers would make the decisions for them, but they need those benefits.
I hope that the Minister will reflect further. He has the benefit of the consultation programme. Let us hope that some revelations about that will be made before the Bill's Third Reading because it might help to make his mind up. Not many people will have written in, in response to the consultation paper, to say that they favour the restriction on 65-year-olds. I would not be surprised if there were a 100 per cent. response against that restriction. The hon. Member for Roxburgh and Berwickshire (Mr. Kirkwood) asked if the consultation responses could be placed in the Library. If the Minister did that, we could identify exactly how many felt that we should remove the restrictions.
The hon. Member for Brighton, Kemptown (Sir A. Bowden) has already said that he will reserve his position for Third Reading, and like him, I hope that, by that time,
the Government will have changed their mind. I think that everybody should benefit from those massive increases in value for money. What is to be gained in trying to stop that?
We have said that local authorities can have discretion, so let us leave them to act as gatekeepers, not try to second-guess them. The Bill is a challenge for local authorities, and rather than putting on blanket restrictions, the Government should let local authorities use their discretion. Many authorities are running schemes already. Last week, Bolton's director of social services told me that he saw no reason for a restriction affecting people over 65 in Bolton, and I am sure that that is felt throughout the country.
I support the Government's position on the difficult question of relatives as paid carers. In the guidance, there should be a strong presumption against using relatives as paid carers, but I was pleased to hear the Minister say that there would be discretion too. It is important that local authorities should be able to use discretion in individual cases.
I shall mention one interesting constituency case--the difficult care case of Paul Hargreaves, who will be 28 next week, and who is severely mentally and physically handicapped. His care is managed by his 70-year-old mother. In her own words, she is "worn out" by caring for him. Indeed, it is extraordinary that our society relies upon a 70-year-old woman to manage the care of such a severely handicapped young man.
Paul's mother, Norah, had an excellent carer arranged through the independent living fund. She became fond of him, and decided that it would be mutually advantageous if they married. Unfortunately, if they had done so, the independent living fund would immediately have stopped all the payments. That example demonstrates why discretion is needed.
Paul's mother receives £325 a week from the independent living fund, and has a team of three carers who provide nearly 100 hours a week, but no care is provided for Paul during the night. You can imagine,Mr. Deputy Speaker, how difficult it is for a 70-year-old lady to try to cope with her 28-year-old severely handicapped son on her own, without outside help, during the night.
I hope that the Bill will enable the local authority to provide an extra financial care package, so that Paul's mother can buy in care to help during the night as well. She has said how much she appreciates being able to manage the care herself. She much prefers the flexibility of the cash arrangement that she now has, but she still needs to be able to buy rather more care.
I do not wish to go through all the other items in the consultation paper; no doubt they will come up in Committee. The hon. Member for Roxburgh and Berwickshire said that he might have some influence on the Committee of Selection, so he might like to include me, if he wants another name to put forward for the Committee.
I do not see why there should be a four-week restriction on respite care. Again, local authorities can be left to make up their minds on such matters. As for support services, local authorities should be encouraged to provide them, and voluntary organisations could also do so.
Indeed, I see no reason why local authorities which provide a support service in their own areas should not offer the service outside their areas too. If a local authority
in one area could not offer a support service, or if an adjacent authority offered an especially good service, it should be easy for the carer or the recipient of the care to organise care through the support service in that neighbouring authority. Such arrangements need not be limited to one's own local authority. Support services can be provided equally well by outside agencies, and there could be a degree of competition.
As for regulation, in Bolton there is now a voluntary regulation scheme. I would be inclined to leave that in place, but obviously if there were substantiated fears that abuses were taking place, we would have to consider statutory regulation. However, care units are often very small, and we should not try to impose too much regulation on them.
In conclusion, I call upon the Government to scrap all the eligibility rules. Let us forget all about them, so we do not have to worry about what is tucked away in the regulations concerning 65-year-olds, and mentally handicapped people, even if it can be demonstrated that they can manage.
Mr. John Heppell (Nottingham, East):
Like everyone else, I start by welcoming the Bill, but I drag hon. Members back a little way by reminding them that we are now passing a law to allow people to do what they have been doing for years anyway. We are talking about direct payments, but they first came into operation in 1981. The first centre for independent living was set up in 1983, and the independent living fund in 1988.
Schemes have been set up all over the country. The councils in Wiltshire, Derbyshire, Avon, Leicestershire, Hampshire and Merton all set up schemes. I am pleased that those councils now support the idea of direct payments, but we must remember that such payments have already been working for a long time.
I have some concerns about the Bill, but in view of the time, and of the fact that some of my hon. Friends want to speak, I shall stick to just a few points. First, I know that the Bill will extend choice for people with disabilities, but I want to extend that choice to everyone with disabilities, not just to a few people in certain categories. Otherwise, we shall be legislating to bring about more discrimination.
The reason for the eligibility argument has much to do with the success of existing direct payment schemes and of the independent living fund itself. The initial estimate was that demand for the fund would not exceed 1,250 people overall, but by 1993 more than 21,000 people were taking advantage of the scheme. The arguments against people over 65 and people with learning disabilities are really the Government saying, "We do not dare open the floodgates." Such an argument causes me, as well as disability organisations and people with disabilities, much concern.
I understand that, nationally, 30 per cent. of all current schemes are designed for people over 65. My local authority, Nottinghamshire, now has 128 schemes in which indirect payments are made, and 78 of them are for people over 65, so more than 50 per cent. of the schemes that operate direct payments through the route of third parties are being run for the benefit of people over 65.
I want those schemes to be not only protected but extended. The people involved with the schemes are happy with them. The social services departments and the local authorities as a whole are happy, and, as is more important, the people with disabilities who receive the services are happy too. Those schemes need to be extended. However,I must admit that it seems strange to see local authorities acting like drug barons or gangsters, and laundering their money through a third person to get it to the person who wants to spend it. To me that seems wrong.
There is plenty of discrimination against people over 65 already--for instance, in terms of social security benefits. I recognise the historical reasons for that, but I hope that, over time, it will be phased out. I do not want us to introduce legislation that causes more discrimination.
I am also concerned that people who have learning disabilities will not be allowed to take part in any scheme. According to the independent living fund, 18 per cent. of its customers are people who have learning disabilities. I have managed to establish that in my authority there are at least six schemes in which people with learning disabilities take part. At the moment, those people make decisions about what council services they want, and I cannot see any reason why they cannot make decisions about direct payments.
In Nottinghamshire, 19 people who are infected with HIV are on schemes. In many respects, direct payments would be ideal for them because the sort of service that they want--some befriending, and a little social care--does not fit easily into the usual mode of local government provision.
All ILF recipients found that the ability to control their personal assistance, and therefore their lives, improved their quality of life. Many of them also said that they would have liked more practical support, especially in the early stages of independent living. It is a shame that the ILF money was not ring-fenced for independent living when it was transferred to local government because it has drifted into councils' general budgets and disappeared. We ought to try to pluck some of that money back out and persuade local authorities to use it to kick-start local organisations into setting up personal assistance support schemes.
Employing people is difficult. As my hon. Friend the Member for City of Durham (Mr. Steinberg) said, it involves many tasks such as drawing up job descriptions, advertising, short-listing, interviewing, recruiting, drawing up contracts of employment, sorting out tax and national insurance, setting rates of pay and considering insurance and health and safety. When I became a Member of Parliament, it was a nightmare being an employer for the first time in my life. We therefore need to ensure that people who become employers have the proper support, and not only when someone is first taken on. People will need on-going support because new problems will arise as the disabled user identifies new needs.
It is almost certain that disputes and tension will arise between the employer and the employee, as I suspect anybody who has ever been an employer knows. It is the nature of the relationship. That is fine when one is employing somebody to fix a car, and it is probably okay when one is employing somebody as a secretary, but when the person being employed is relied on to get his employer out of bed in the morning or to dress or feed him, it is understandable that the employer will feel vulnerable without support.
There are already many schemes to provide such support, but, unfortunately, they vary. There are reasons for the variety: local authorities interpret the law differently, different local structures and priorities affect the way in which services operate, the degree to which an active disability or voluntary organisation operates and what relationship it has with the local authority differs, and geographical location is a factor. There are generally more personal assistance support schemes in urban areas and more in the south of the country than the north.
"The findings indicate that support arrangements financed by direct/indirect payments are, on average, between 30 and 40 per cent. cheaper than equivalent service based support. The average hourly unit cost of support for people receiving payments is £5.18 compared to £8.52 for service users."
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