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10.38 am
Baroness Campbell of Surbiton: My Lords, for more than 25 years now, I have been actively campaigning for disabled people to have the right to independent living and I wish that I had the lung power to regale the House with stories of how independent living has transformed disabled people’s lives, from watching daytime TV in the front room to becoming active citizens participating in their communities, accessing jobs and, indeed, speaking in the House of Lords. For those noble Lords who would like to know more, please—for those who like browsing the internet—just tap in “independent living” and “disabled people”. They will be amazed at what they read. I have also had the honour of working alongside the highly esteemed noble Lord, Lord Ashley, for more years than I can remember. In fact, I am his disability shadow.
To participate fully in society as equal citizens, disabled people need their support to be safeguarded in a legislative infrastructure. The Bill provides such a mechanism. It is the perfect complement to the Disability Discrimination Act and the Government’s forthcoming independent living strategy.
I am a trustee of the National Centre for Independent Living, an organisation that I co-founded with Frances Hasler and which is committed to the principles of the provisions of the Bill. The organisation has amassed much evidence showing that the independent living support that I enjoy and need to participate in this Chamber is a right denied to many citizens. It is not a right so much as luck: in where you live; in who assesses you; in whether or not you get the information that tells you about your entitlements; and in who supports you to get what you want.
I recently had the great honour and privilege of chairing the expert panel on the Government’s independent living review. We advised the Government on how to realise the independent living aims of the 2005 Improving the Life Chances of Disabled People report. For nine months, we considered a range of measures that would help all government departments to develop strategies and projects to support independent living. We should not forget that independent living is not about eating, drinking and going to the toilet; it is about being supported to be an active, independent person in your community. People often forget that. It is not simply about social care but about everything the Government can offer to ensure that the public can contribute actively. The panel’s report will be available soon, I hope at the end of January. It is a good report and it certainly takes us in the right direction towards independent living.
However—and there is a “however”—although the expert panel gave much evidence and argued for
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The Bill will provide the safeguards that we as disabled people need. It will also deliver significant results for other citizens, such as carers, who are mostly women but who include thousands of children, who are obliged to provide substantial support to families as a result of receiving inadequate levels of support or being denied it entirely. The Bill will further engender equality—caring undermines women’s opportunities. It will also allow the better use of public funds by cutting bureaucracy, by avoiding unnecessary spending in health services and on benefits, by securing greater returns from people in work and by prioritising substantial individual budgets. To be effective, individual budgets will require legislative reform to provide a single assessment process for joint funding streams. The Bill could deliver such a process.
The Government have outlined three goals for next year’s adult social care Green Paper. The first is to promote independence, well-being and control. The Bill goes to the heart of that objective and will support it. It supports and progresses the Government’s prioritisation of personalisation, choice and control. It also promotes the Government’s public service quality agenda by emphasising accessibility, flexibility and respect for service users. It will also complement the equalities public service agreement set by the Government. The PSA prioritises choice. Its performance framework contains the means to monitor and challenge progress, but not for individual redress. People will still be told that they cannot have assistance for a bath. It is no comfort to them to know that their council may get a less positive performance assessment as a result.
In closing, the Bill and the government agenda, including the independent living strategy, are complementary and vital to each other. I am convinced that the legislative reform of public service support is essential to ensure independent living for all disabled people. As someone who has been in the business for more than 25 years, I now know the route to disabled people’s emancipation, and it is Jack’s Bill.
10.47 am
Baroness Greengross: My Lords, it is a privilege to take part in this debate. I welcome the Bill and congratulate most sincerely the noble Lord, Lord Ashley, on introducing it. It will empower disabled people in actions and decisions related to accommodation, care and payments, and will promote equality and human rights.
I congratulate the Government on the work that they are already doing in introducing the new social care concordat and the independent living strategy,
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Much in the Bill is very much needed. As the noble Baroness, Lady Campbell, eloquently described, we must do something about the fact that a huge number of disabled adults still rely on care and support from a child or young person to the huge detriment of that young person’s needs and well-being. The recommendations in the social care concordat will enhance local autonomy. This is fine and very welcome, but we also have to recognise that lack of uniformity can create huge difficulties if a person seeking services lives in an area where services are of a low standard. National standards are essential to combat the lack of care so movingly described by the noble Baroness, Lady Campbell.
The concordat, while excellent in itself, as the noble Baronesses, Lady Masham and Lady Campbell, have said, offers no redress for an individual if his or her needs are not considered to be critical. Very often they are not met. This must change and I hope that the Government will look at the underlying philosophy which still tends to see low-level care as a short-term cost and, therefore, ignores early investment in preventive and lower-level care and support as unimportant. This should be seen as an investment which can prevent higher-level care, which is far more costly, later. This Bill would go some way to ensuring that this happens. The Government must also bear in mind that the concordat requires adequate investment in order to achieve their admirable goals, but a 1 per cent increase in resources in the next three years is recognised by Wanless and the Rowntree Foundation as inadequate when at least £2 billion to £3 billion is needed to achieve anything worth while.
Independence is an excellent aim, which is fine, but it is not for everyone an end in itself. We have to ask many people what independence is for. What is it in order to do? Why does one want independence? For most of us, living means full social participation, self-fulfilment and freedom of choice. Most adults of working age gain that mix of self-fulfilment and independence, financial and social, through work, usually through a combination of income and social capital. Disabled people are no different from anyone else in that regard. So I ask the Government how people will be informed of their rights, responsibilities and choices in terms of employment and benefits if the new personal capability, and now in addition it appears skills, hurdles that are implicit if the Government’s welfare reform aims are to be successfully negotiated. How will this Bill interface with the Welfare Reform Bill and the equality and human rights agenda, which are very important to many of us, as exemplified in the recent single equality legislation proposals, another point I should like the Government to clarify?
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The Bill will ensure faster and stronger reform and guarantee to many individuals that their needs will no longer be ignored. These aspirations are surely worthy of our total support.
10.53 am
Lord Best: My Lords, I congratulate the noble Lord, Lord Ashley, on persisting with this excellent Bill and on giving us a chance to debate the key disability issues of today. I pay tribute to the three noble Baronesses who have spoken before me for their wonderful campaigning work on these issues over the years. I should like to address issues in Part 4 of the Bill relating to accessible housing. I declare my interest as chair of the Hanover Housing Association, which provides housing and care for 19,000 older people and has 16 local care-and-repair home improvement agencies under its wing.
The issues of inaccessibility divide into two parts: accessibility for existing properties that need adapting to make them suitable for people with disability and mobility problems, and the building of new homes. If homes are inaccessible because of steps up to the front door, an upstairs loo or bathrooms that cannot cope with a wheelchair, people can become impoverished inside their homes, can be forced to move to expensive residential care or can languish in hospital unnecessarily when they want to be at home, while the hospitals need the beds.
The adaptation of existing properties to make them accessible and the building of new homes from the outset need to be treated separately. In relation to adaptations, I congratulate the Government on abolishing the pernicious means test for the disabled facilities grant and, just a few days ago, increasing the resources available for this grant by some 20 per cent. I hope that the ceiling on the cost of any adaptations, currently £25,000, which no longer covers major changes to a property, may be raised soon. Will the Government assist local authorities in overcoming the long delays currently experienced by those waiting for occupational therapists to assess their needs and for the bureaucratic machine to pay these mandatory grants for adaptations? Home improvement agencies and care-and-repair and staying-put schemes are doing great work in organising adaptations to existing homes. I hope that the Minister will be able to report soon on increased backing for these excellent local organisations.
New homes being built can be designed in ways that mean expensive adaptations later will not be necessary. In the final years of the 1990s, the then Minister for construction, Nick Raynsford, wisely and helpfully introduced new building regulations in response to the efforts of the Joseph Rowntree Foundation and its partners which devised the lifetime homes standards for new housing. These revisions to Part M of the building regulations represented a huge step forward in making all new accommodation more accessible to those with disabilities, to young mothers with buggies, to teenagers with broken legs, to visiting grandparents with mobility problems and to the human race in all its many forms. It is far cheaper, and infinitely more
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In the years since 1999, when the building regulations were revised, two issues have needed to be addressed. First, these new controls did not go the whole way to introducing the full lifetime home standards and further work was needed to implement the remaining elements. Secondly, knowing the problems in the construction industry, it was necessary to ensure that these new regulations were complied with by every house builder. In terms of extending the regulations to encompass all 16 elements of the lifetime home standards, some progress has been made on several fronts over the past eight years. The Greater London Authority, the Welsh Assembly, the Northern Ireland Executive and a number of enlightened individual local authorities have incorporated into their planning policies the requirement to meet lifetime homes standards. The Government now hope, through guidance in their code for sustainable homes, to see these higher standards of accessibility adopted for all house building in the future. I hope that the Minister will update us on progress to that end.
Using the planning system to require certain standards before planning permission is granted is not as stringent an approach as using the building regulations, which involve building control inspectors visiting sites to make sure that these measures have been fully complied with. The Government’s Building Regulations Advisory Committee—BRAC—has now completed its work in creating a British standard for accessibility, incorporating an updated, polished version of the lifetime homes standards. I understand that this is now ready to go. I should be grateful if the Minister could tell the House whether this further improvement to Part M of the building regulations is now to be taken forward.
This leads me to my final point on new homes—the success of enforcement of the existing 1999 building regulations in relation to accessibility; and therefore later, I hope, the enforcement of enhanced regulations. In 2003 the Joseph Rowntree Foundation published research from Professor Imbrie, which concluded that,
- “many developers and building control officers do not adequately understand the objectives of Part M of the Building Regulations relating to the accessibility of new housing. Indeed, the regulation is commonly regarded as ‘half-hearted’, and it is often poorly interpreted and variably enforced, leading to an unsatisfactory outcome for the design of new housing stock”.
After the report was published, I asked the Minister then responsible, the noble Lord, Lord Rooker, when Her Majesty’s Government intended to undertake a review of Part M of the building regulations, as revised in 1999. He replied:
“My Lords, the Office of the Deputy Prime Minister has recently commissioned research to evaluate the impact of the changes to Part M of the building regulations, which concerns the accessibility of all new homes and was introduced in 1999. The work is expected to begin before Christmas and to report in about two years’ time”.—[Official Report, 15/10/03; col. 934 .]
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It is now four years since that statement. I hope the Government do not think that we have all forgotten the Minister’s very positive announcement in 2003. When will this review, now more than two years late, report so that we can then see what action may be needed to bring recalcitrant builders into line and ensure that these invaluable improvements in accessibility, secured by the Government, appear on the ground for the benefit of disabled people and for society at large?
I heartily commend the Bill and look forward to the Minister’s response.
11.02 am
Lord Pearson of Rannoch: My Lords, I, too, congratulate the noble Lord, Lord Ashley, on his persistence and I support the Bill in general. I again declare an interest as the father of a daughter with severe intellectual impairment. If I have a doubt about the Bill, it is that it does not appear sufficiently to spell out and protect the position of the family carers of people such as my daughter and the needs of people who are even less fortunate and who are more intellectually disabled than she is.
Noble Lords will be aware that there can be a good deal of tension between family carers and other carers. One of the roots of this tension seems to come from the many people and their representatives who are less handicapped than my daughter, who feel that their families are too controlling about their care and lifestyle. I and those whom I represent accept and respect their position entirely and we agree wholeheartedly that the conscious choice of those who are able to make such a choice should be fully met. But many thousands of people simply cannot make that choice. For those people, the views of their family carers, when they exist, should count very much more than the views of outside professionals unless there are clear and good reasons why that should not be so.
Lord Ashley of Stoke: My Lords, the noble Lord’s point will be respected and discussed in Committee. We will do anything we can to meet that point.
Lord Pearson of Rannoch: My Lords, I am most grateful. I was going to propose that.
It is in this context that I should again reveal that my daughter, who is now 27, is very fortunate to live in a Rudolf Steiner Camphill community, one of many intentional communities around the country. These communities are very much in demand among the family carers of our most disabled people, although they are not always wholly popular with local authorities and social services. That is unfortunate, because these communities are very care-effective and also very cost-effective, saving around £50,000 per annum per person over normal community care. They also allow people such as my daughter to live far more independently than they could under any form of care in the wider community outside. As my daughter said to me recently, “You see, I can help other people in the village”, whereas there are occasions when it is clear that she feels something of a nuisance at home, however much we can do for her.
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I hope that we can amend the Bill in Committee to give more encouragement and funding to family carers and to intentional communities. Like the noble Baroness, Lady Greengross, whose words I strongly support, I imagine that we will come back to the subject when we consider the Government’s new consultative document Valuing People Now. In the mean time, I would be grateful for any words of encouragement that the Minister can offer to the family carers of our most severely intellectually disabled people and to our intentional communities, which do such a wonderful job for our least fortunate people.
11.06 am
Lord Addington: My Lords, I made the crack several years ago on a disability matter that the usual suspects were queueing up to speak again. The noble Lord, Lord Ashley, is probably the very distinguished head of that queue. The noble Baroness, Lady Chapman, comes in with me as a new member of the line-up. Her speech encapsulates why this Bill, or something very like it, is needed. It is not that the Government are ill intended or that the bodies involved do not want to do this; they just do not do it—they do not co-ordinate. When you ask the Government to co-ordinate anything, they say, “We are co-ordinating. We have a group of people who meet together, talk and try to bring things together”. Then something happens—but not very much—and sometimes the Government forget what happened when the people who were brought together are no longer there and have moved on. Whether they are Ministers or officials does not matter; the process goes on.
This is why most of us keep coming back and asking for a more solid structure, ultimately involving an Act of Parliament that brings everything together. We need something that says, “You shall do this”, not, “If you can, and it is your best intention, please do it now”. It should say, “You shall do this. There is a sanction if you do not. You have a duty to do it. Get on with it, please, now”.
The noble Baroness, Lady Chapman—
Baroness Campbell of Surbiton: Lady Campbell.
Lord Addington: My Lords, I am sorry. It comes from being a dyslexic, I am afraid. We make mistakes.
The noble Baroness pointed out that the lucky and the brilliant get through the current system; it is that simple. It may be better now than it was—as the noble Baroness said, let us try to get it right for a second time—but we have to go further. The Government will tell us, quite rightly, that they have made considerable steps forward. They have, but so they should. On this issue, every Government and every Parliament can say that they have done better than the preceding one. The counter to that is, “And so you should. You should learn from mistakes. You should make sure that you do not commit the errors of the past”.
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The noble Lord, Lord Best, referred to new-build housing. It is much easier to incorporate the necessary facilities in new build and to get it right now because there will be no add-on costs. The London Underground system is a classic example. As the noble Lord, Lord Best, said, it has too many steps, which are inconvenient to everyone—a mother pushing a buggy or someone with an injured leg. A few years ago when I was on crutches for a few weeks, it was very much emphasised to me that the steps in the London Tube system are incredibly difficult for anyone with any form of movement impairment. Add a bag to the equation, and many Underground stations become almost impossible to get around.
The Bill of the noble Lord, Lord Ashley, calls for co-ordination of best practice leading to a situation where you have to do what is deemed to be best at the time. The comment of the noble Lord, Lord Pearson, about the best way forward for various groups within the disability community is an argument for setting up a framework to deal with this. The disability lobby is so multifaceted that you must effectively formalise informality; you must build in flexibility, but there must be an end point.
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