Disabled Persons (Independent Living) Bill [HL] — Second Reading
Lord Ashley of Stoke (Labour)
My Lords, the Second Reading is an important stage of any Bill, but this is the third Second Reading that this Bill has been given. On the previous two occasions, the Government gave the Bill a warm welcome but then said, "Thanks, but no thanks". I hope that they will give a different response today.
In preparing the Bill, I have been assisted by the Royal Association for Disability and Rehabilitation, led by Caroline Ellis, and another significant contributor is my personal assistant, Trina Pott.
Basically, the Government's objections boil down to the cost of the Bill, its timing or the need for it at all; there is, they imply, sufficient legislation for Britain's 11 million disabled people. Let us examine that statement and see whether they still stick by it. It is nonsense to say that there is sufficient legislation for these 11 million people because if the legal and other provisions were adequate there would not be the sustained protests from millions of disabled people and there would be no need for a Minister for Disabled People. How can the Government claim that there is no need for this Bill when the vast majority of councils refuse to support disabled people within their areas? Some councils provide the absolute minimum of social assistance; they provide food and a wash for people in need. It is a policy dictated by a Scrooge-like mentality, but it is not good enough and must be changed.
Suggestions and recommendations from the Government and other authorities are fine, but they are not a patch on mandatory provisions. The Bill would ensure that responsibility for providing wider resources is made obligatory. In other words, disabled people would be entitled to the provisions and would not need to argue for them. For example, the Bill would place a clear duty on local authorities and NHS bodies to co-operate between themselves and with key partners to provide the means of independent living. It would require them to provide funds whenever necessary to deliver the duties contained in the Bill. This would avoid the multiple assessments, delays in augmentation and the fragmentation in care which exists at present. Significant gains would be made by the Bill.
The Bill provides a clear right to self-assessment of disabled people's requirements for assistance and support. This is the very heart of the Bill. The right to self-assessment of their requirements is crucial and would ensure that any support given is what the people themselves want and need, rather than their having to wait for the local authority to give them what it thinks they ought to have. So far, disabled people have been expected to fit into services, but the Bill provides that services should be personalised after assessment and therefore suit the person. It also provides that disabled people should be empowered to determine where they live and who they live with. If the Bill is passed, it would be unlawful to force anyone into an institution against their will. Today there are people who have been sent into institutions against there will, which is shocking and disgraceful.
As a lack of information can cripple any efforts to provide for disabled people, the Bill provides that authorities would have to identify all the disabled people in their area and maintain a register. They would also have to provide a wide range of assistance, such as communication aids and other forms of helpful equipment, technology, independent advocacy and practical assistance in the home and elsewhere.
There would be a new system of individualised budgets. The present range of different services to help with personal care, support, equipment and adaptations would all be brought together. Disabled people would be able to use their individual budgets in the form of care or social services, or a mixture of both, to spend on housing, equipment, personal assistance, transport or whatever they desire.
A crucial part of the Bill is that regulations would be made specifying minimum outcomes. That is designed to prevent local authorities from wriggling out of their responsibilities. Regulations would ensure that there was no doubt about where that responsibility lay.
Of course these changes would have to be paid for, but we need to bear in mind the important economic benefits of investing in independent living. As people become independent and return to work, they earn from employment and pay taxes. There would also be savings on the social security budget. Another consequence would be a reduction in manpower for social services as people became active and got back to work.
Disabled people have always found housing to be a bugbear, but the Bill would create a disability housing service. Each local authority would have to provide a list of accessible properties and a record of disabled people requiring such properties, and then provide a matching service. The terrible shortfall of accessible housing would no longer be a problem because people would be fitted to properties through that matching service, or to new dwellings of whatever type. That would be a huge saving for the authorities and avoid the heavy cost of later adaptations.
Nowhere in the existing community care provisions will we find any reference to choice, control, dignity or equality. Disabled people are as much entitled to those as anybody else but social services departments routinely make decisions that contradict those fundamental values. We intend to stop that.
The Bill would empower disabled people to assess their own support and needs, but if they needed an advocate they could get one. That would give the disabled person the right to be told what they are entitled to and to create their own package. It would give people a real choice between managing their budget with practical assistance, by replacing it with a trusted person or an organisation to manage it on their behalf, or taking statutory services in lieu of cash. These are important changes.
The new framework would provide for a national minimum guaranteed entitlement so that postcode lotteries were eradicated. It would make freedom of movement possible for disabled people. By introducing portable support pages, disabled people could move from one local authority to another for jobs or other reasons. That would negate the necessity of undergoing another assessment to negotiate another package from scratch.
The Bill would also fill the legal gap of the absence in law of offering protection against unnecessary institutionalisation. It would prevent a person being institutionalised against their wishes or on the grounds of financial expediency. For those in private and voluntary care homes, the Bill would provide the full protection of the Human Rights Act.
I offer the Bill to the House as the best hope of a "New Deal" for Britain's disabled people. They have suffered neglect and even ostracism for too long. It is time that they came in from the cold. I beg to move.
Baroness Verma (Shadow Minister, Innovation, Universities and Skills; Conservative)
My Lords, I declare an interest as a provider of adult social care. I thank the noble Lord, Lord Ashley of Stoke, for introducing this Bill again. My maiden speech in your Lordships' House was on this subject. Coming from the care sector, I sympathise very much with some of what is in the Bill. I shall concentrate on individual budgets and the support and advocacy that would be required to ensure that people using such budgets had all the right safeguards in place.
In all the years that I have been in care provision, there have been huge changes in who is eligible for what type of care. Those of us who have supported independent living have become quite frustrated that the criteria have changed so much so quickly and that, instead of assisting people to become independent, it has made them more dependent and less able to communicate in the wider community. So I looked at the Bill carefully. On the basis that every human being has the right to live their lives to the best of their ability, we should look at some of the serious issues that it raises.
The noble Lord, Lord Ashley, is right to take a holistic approach to provision for people with disabilities. Such an approach ranges from how houses are built to how they can provide for people in the longer term, rather than saying that people can no longer stay in their homes but will have to go into institutionalised living. People are now living longer, but all of us will eventually become less able to manage our own lives as we are hit by the affects of age. It is worrying for most of us that we are not looking at issues such as how houses are built and how access is provided to services—particularly because we are dependent on 6 million voluntary carers. Those people also will eventually require care.
Part of my business looks after people with severe disability, but much of the Bill is about people who are able to manage major parts of their lives and who need just light-touch support in care. I hope that when the Minister responds she will be able to give us a little more detail on the safeguards built around the individual budgets.
I agree completely with the noble Lord that individuals should be able to assess themselves and participate in deciding the kind of care they receive. As often as not they are told, "In this care package you are going to get a wash in the morning and be put to bed in the evening". The rest of the day they have to manage by themselves, without access to the outside world—to shops, the theatre or cinema, the simple things that the rest of us take very much for granted. I hope that the Minister can give us some detail on the promotion of individual budgets and the safeguards behind them.
I accept that we need to control how money given to individuals is spent, but who will be responsible if an individual budget is set? Who will be responsible for the CRB checks and the insurance behind the individual budgets? Who will be responsible for complying with the PAYE scheme? Who will be responsible for the sickness benefit of a person looking after somebody with an individual budget? Who will look after those areas of employment? With an individual budget you are largely employing somebody in your own right to carry out your care.
As I look through the Bill, my heart goes out to the many people who do great work in this sector of care. However, social services have always been the poor relation of care in this country. If we are going to prevent greater dependency on the NHS, we will need to look at how to encourage a better quality of life for people within their own homes. It is disgraceful to assume that just because we cannot manage parts of our life we cannot manage the majority of it. Most disabled people, with the right support mechanisms, can do most of the things that the rest of us do.
I have some very simple questions for the Minister which arise from reading the Bill. How much pressure is being put on local authorities to ensure that people with disabilities are able to access public places easily? Are facilities available for people who have wheelchairs or who use walking sticks or who may be partially sighted? Many public places and leisure centres are restricted in their access. What are the Government doing to encourage better access to transport? The worst thing for a person with disability is to find himself bound to his home, unable to go anywhere unless people are there to assist. I could go on at length about this huge issue but I shall not. My final question to the Minister is whether she will ensure that all new housing is built to a minimum standard so that wheelchair access is available in the long term and so that stairs are wide enough for stair-lifts should they be needed.
Baroness Campbell of Surbiton (Crossbench)
My Lords, I warmly thank the noble Lord, Lord Ashley, for his dogged perseverance in bringing the Disabled Persons (Independent Living) Bill back before this House. I declare several interests in relation to it. First, I am a trustee of the National Centre for Independent Living. NCIL is a national organisation of disabled people which strongly supports the Bill. Its members are probably watching this debate on their computer screens across the country, so we are being watched avidly.
Secondly, I have had the honour of chairing the government working group on the right to control. This work helped bring about the legislative commitment, enshrined in the Welfare Reform Act, to give disabled people control over any support service that increases active participation in the community, including work. Lastly and highly relevantly, I am a commissioner of the Equality and Human Rights Commission. I was recently privileged to be the lead commissioner on its report, From Safety Net to Springboard, which examines the state of social care and other public services addressed in the Bill. It sets out a number of recommendations that mirror much of the Bill's intent. It describes a "care crunch"—not a credit crunch—resulting from inadequate provision and missed opportunities which risk undermining Britain's future social and economic success by exacerbating inequalities, disregarding human rights and creating tensions between generations and social groups.
The existing care and support system is seen as a marginal public service. It does not enjoy the status of health and education. It provides a safety net, propped up by individual goodwill among families. It is not treated as contributing positive social and economic outcomes. We at the commission believe that that is wrong. Social care has the potential to be a springboard for independent living, promoting the capabilities of individuals and their families to contribute socially and economically.
The recommendations of the commission's report completely echo the provisions in this Bill. For example, the report proposes a national framework of guaranteed outcomes based on human rights principles, exactly as provided for in the Bill. It recommends action to ensure the availability of independent advocacy, also proposed in the Bill. Independent advocacy can make the difference between keeping and losing a job. It can mean the difference between being able to manage one's own support and budget and having that done for you.
The vital importance of advocacy is highlighted by a man whom I shall call John. This is a story that I heard last week. John has a progressive neuromuscular impairment like mine. During a recent social care assessment, his local authority tried to withdraw funding for overnight assistance, arguing that it was a medical need. The local authority claimed that the purpose of being turned in the night was to avoid pressure sores. "But I have a ripple bed", he said; "it's not pressure sores, it's discomfort". But they insisted on deeming it a medical matter. John's local PCT rightly refused to fund this assistance, so the local authority said that being turned at night was not essential and that if John was uncomfortable he should take painkillers before he went to sleep. John said, "But what if I need a drink in the night?". "Drink more before you go to bed", they said. "But if I do that, I'll want to go to the loo". "Use a catheter", was their response.
To be treated in this way is degrading and, arguably, contrary to the provisions of the Human Rights Act. John is young and articulate; he is in the legal profession as an advocate, and he was able eventually to rebut the local authority. However, he told me that fighting to preserve his dignity was incredibly difficult and demoralising. I fear that older disabled people and others who do not have such strength of character will fare less well; they will go to sleep tonight with discomfort and have to decide whether to take painkillers because there is no one there to assist them. Advocacy and access to peer support are essential tools in preventing abuse.
Finally, I draw attention to the part of the Bill that will give disabled people the same freedom of movement as that enjoyed by our non-disabled peers. Noble Lords will know from the Health and Social Care Bill that I am intent on raising the issue of the inequality of non-portability. I should like the Minister to tell me how things are going on this issue, as she will remember that quite a few promises were made from her Bench during that debate. It is unacceptable that people cannot move between local authorities with their social care intact. Instead, they have to beg for resources all over again through the reassessment process. They are often subjected to different rules regarding who gets help and who does not. There is no guarantee that a new assessment will support or continue your way of life.
The Government have already embarked on many positive steps, creating greater choice and control for disabled people. However, gross anomalies still abound, such as the absence of a clear entitlement to manage your support if you qualify for continuing health funding. We still have a system of statutory guidance that allows local authorities to restrict support in ways that thoroughly undermine human rights. We have a system in which those in residential care have fewer rights of review and redress than inmates of HM prisons. Such anomalies threaten lives, weaken families and damage our communities and economy. The noble Lord's Bill would remove these anomalies; it would free people not just to exist but to participate and contribute to society.
The commission, and the Disability Rights Commission before it, is right to assert that the pace of change must accelerate to avoid damaging the social and economic fabric of our society. The noble Lord is offering us a vehicle to deliver that change. We cannot afford to say no again.
The Bishop of Winchester (Bishop)
My Lords, it is a privilege to speak briefly in support of the noble Lord's third attempt to bring forward these very important proposals. It is a special privilege because, as Bishop with responsibility for Stoke-on-Trent before being called to Winchester, I hold him in particular admiration. It is also a privilege to follow the noble Baroness, Lady Campbell. As she spoke of the noble Lord's dogged perseverance, I thought, "It takes one to know one".
I spoke yesterday in preparation for coming today with one of those responsible for the Southampton Centre for Independent Living—a major resource over the past 25 years or so for disabled people, led and run by them in my own diocese and across the centre of the south of England. That person, himself a disabled person, emphasised very strongly how urgently the centre, and organisations like it all over the country, want this Bill at last to reach the statute book. As I talked with him and thought of others that I know, I thought too of the vast amounts of money being spent to shore up the financial structures with very little assurance as to what their outcomes will be and the light that that sheds on the possibility, after all, of government being able to spend the necessary money to do this job well.
I cannot pretend to expertise that I do not have, so I shall not engage in the details of the Bill; but that engagement will be important, as the noble Baroness, Lady Verma, noted, if the Bill is to gain its objectives. A whole series of detailed questions, of which hers were only some, must be well thought through by us in this House and the other place. I hope that is done with a sense of urgency to get the Bill through, rather than there being any kind of nitpicking that holds it up. I want simply to endorse what seem the fundamental and, as we have just heard, most important principles of independent living, set out in the noble Lord's speech and in those that have succeeded him.
I end by offering this obvious but necessary observation. It is not only right in the basic meaning of the word to meet the needs, support to the greatest possible degree the independence and secure the rights of disabled people. A great deal that the rest of us receive from people who live with disabilities—both at the individual level, among those we meet or work with or who are among our friends, and more widely economically, as the noble Baroness, Lady Verma, pointed out—will be further increased and deepened as people with disabilities are able more consistently to live confidently and independently and with self respect, and do not have to deliver enormous quantities of what are often limited energies in fighting for their rights and what they need.
Lord Rix (Crossbench)
My Lords,I welcome the Bill most warmly, and I congratulate the noble Lord, Lord Ashley of Stoke, on his ceaseless efforts to promote independent living for disabled people. As president of Mencap, which represents both people with a learning disability and their families, and through my own personal experiences, I am only too aware that such a disability ensures discrimination and denial of choice and freedom, both for the learning-disabled person and for their family carers.
In the past, Ministers have said that they support the principles of the Disabled Persons (Independent Living) Bill and that those of us campaigning on behalf of disabled people should be encouraged by recent changes in legislation and policy, which will transform disabled persons' lives.
However, I wish to paint a very different picture of what is actually happening to disabled people, in particular the United Kingdom's one-and-a-half million people with a learning disability, as well as their families and carers. Only by introducing measures such as the ones in this Bill will we see tangible steps taken towards realising the Government's aim of equal citizenship for disabled people by 2025.
Of course, we have come a long way since people with a learning disability were kept hidden from public view or segregated for life in so-called hospitals. But the sad fact is that increasingly inadequate funding and the tightening eligibility criteria for crucial social care is turning back the clock for many disabled people, leaving those with a mild or moderate learning disability receiving no support whatever, and much reduced support for those who remain entitled to care. Disabled people are being charged for previously free basic social services, even though we know they are already twice as likely as non-disabled people to be living in poverty. Meanwhile, family carers are left to plug these big gaps in basic care, many having to give up gainful employment to perform these relentless tasks.
No doubt, the Minister will reply that some steps are gradually being taken towards the aim of equal citizenship, such as in the field of employment support for disabled people. That is absolutely correct, but when it comes to people with a learning disability, how might they cope in a new workplace if they have not had the training in social skills for which this Bill legislates, or if they have not been supported to participate in other inclusive activities throughout childhood and early adulthood? We need a holistic approach to independence and, for me, that is what the Bill is all about.
For many with severe learning disabilities and their families, the crisis in care provision has been exacerbated following the recent campus closures in residential NHS care. The closure of these campuses is very welcome but too often results in a reduction of support for the individual as local authorities try to save money. I believe that the duties set out in the Bill would make it harder for local authorities to provide inadequate levels of support.
"Is he aware that local authorities have no legal obligation to provide 24-hour care services and that some have abandoned plans to build special housing?".
Unfortunately, the Minister did not answer that extremely pertinent question directly, merely contenting himself with,
"Government policy is clear: everyone could benefit from good support to live in the community if that support is tailored to their particular requirements. I cannot stress enough what at local level that personalised care should be about".—[Hansard, 10/3/09; col. 1053.]
Your Lordships will no doubt note that in interpreting the Minister's response, there appears to be no statutory obligation on local authorities to provide good, or even adequate, services, exactly as spelt out by my noble friend Lady Boothroyd. Unless local authorities know precisely what is expected of them and the necessary finance is there, learning disabled people will be left to get on with the minimum support, as has been their unhappy lot throughout the centuries.
Those in the House today may have heard of the widely reported case, documented by Channel 4 in January and referred to by David Lodge in his contribution to two most moving and thought-provoking articles about learning disability, which appeared in the Guardian on the Saturday following the death of Ivan Cameron. Perhaps I may quote the now deceased Lord Byron and,
"lend fresh interest to a twice-told tale".
This unbelievable story is of a family in Norfolk struggling to cope with the transfer of care from an NHS campus. The daughter, Tracy Butt, is 44 and has cerebral palsy and epilepsy. She cannot speak, has very limited understanding and must use a wheelchair to move. Her parents are in their sixties and have suffered ill health—the mother from cancer and the father undergoing a heart bypass operation. Recently, the Norfolk primary care trust told them that the bungalow where Tracy received residential care would be closed. The replacement was to be supported living; in effect a quick transition from full support to extremely limited support, expecting Tracy to cook and to use household appliances, even though such actions were clearly beyond her capabilities. The harsh reality is that her hard-pressed parents would have to fill those gaps. Their fight with social services goes on, as it does for more and more people moved from residential care without a realistic assessment of their complex needs.
Enabling independence does not mean withdrawing help. It means supporting people to make their own decisions, to shop, to manage their money or to travel. Some people will need support with all aspects of daily life, including personal care. The vast majority of disabled-people support tends to be an essential part of independence.
I am concerned that the Government are in denial about the scale of the problem. They need to carry out an urgent survey on the quantity and quality of provision being offered to disabled people seeking independent living. Much of this work has already been done for them by research carried out by others such as the Learning Disability Coalition. Its Tell It Like It Is report last year drew from surveys of people with a learning disability and their experiences of cuts in social care: 34 per cent had seen their daytime activities cut; and 37 per cent of people whose college courses were cut are now staying at home instead. There is further evidence of removals of employment services, transport services and respite care homes. So let us stop denying that there are cuts in services.
Furthermore, a recent study by the Centre for Disability Research, commissioned by Mencap and the Learning Disability Coalition, suggests the social care needs of adults with learning disabilities will increase by up to 5.5 per cent per year from 2009 to 2026, compared with the Government's previous estimates of just 1 per cent growth. The reason for this includes a higher survival rate of babies with profound and multiple teaming disabilities. If this is not addressed, we will continue to see deteriorating levels of social care.
As specified in the Bill, each local authority and NHS body must identify how many disabled persons are in its area, together with his or her needs, and plan support accordingly. Given the inadequate anticipation of disabled people's needs applying at present, this is clearly a necessary step. Personalisation done properly must identify the individual's needs and the necessary funding should then be calculated, rather than the current practice of cutting the cake into even thinner slices.
The Bill proposes a fair and sensible approach to enforcing this, through the introduction of a national resource allocation framework, a move advocated by Mencap and others in the disability sector. Such a system should involve assessment of disabled people with the purpose of working out their entitlement to care. Entitlements set out in a national strategy will avoid the postcode lottery that sees unfairness for those with moderate learning disabilities who happen to live in the three quarters of councils which now support only those with substantial or critical needs. The resource allocation framework is the logical way of enforcing the principles of personalisation, this ensuring that both local authorities and central government understand the many challenges to be overcome before disabled people may truly experience independence.
Also welcome in the Bill is the introduction of the duty to allocate an individual budget. In 2007, the Government stated in Putting People First that individual budgets should be implemented by 2013. But there is no sanction to ensure that this will happen unless it is enshrined in legislation, so that choice over social care is not limited to a minority. Perhaps the fear of individual budgets for government and local authorities is that they can no longer hide cuts in provision when that provision is given as a cash payment.
So when the Minister responds, I hope that she will acknowledge that equal citizenship for disabled people, especially those with a learning disability—whom I have a particular reason to support—is still a long way off, and that the Government must increase funding to make independence and equality of opportunity a reality. We know that the Government are due to publish a social care Green Paper later in the year, and I trust it will be truly aspirational for all disabled people. At least it should recognise the many basic needs which are still required by disabled people who, if it were not for the tireless and often unrecognised support of their families, would be left to lead an unhappy, undignified and, for some, quite impossible life.
Baroness Wilkins (Labour)
My Lords, I applaud my noble friend Lord Ashley for once again giving us the opportunity to press for legislative reform of the care and support framework. It took no fewer than 19 attempts over 10 years to ensure that disability discrimination legislation reached the statute books. I hope that we will not have to wait so long for the independent living Act, or something very similar to it.
I have some reason for optimism. I hope it is justified. Since this Bill was first introduced to your Lordships' House in 2006, it has driven a range of positive developments in relation to independent living. The independent living strategy, published last year, was in large part a response to the Bill and the huge support it generated. This was very welcome. For the first time, we have a cross-government commitment to driving forward policies that take us closer to freedom, choice and control for all. I hope the Minister will be able to update us on progress in delivering the strategy and how disabled people will be involved in monitoring it and holding the Government to account.
The Bill has also helped to bring Government to acknowledge that the care and support system is in need of radical reform, hence the Green Paper on social care reform that we eagerly await, and the Law Commission review of the legislative framework for adult social care. It has also intensified the demand and pressure for roll-out of individual budgets resulting in Putting People First, the transformation programme for adult social care, which is an attempt to galvanise local authorities into action in individualising funding and moving their systems towards delivering choice and control to disabled people. Two Bills currently before Parliament extend this approach, with the Health Bill providing for piloting personal health budgets and the Welfare Reform Bill piloting a right to control employment and related support funding. Pilots of individual budgets for disabled children and their families are also being pursued.
Lifetime homes are another measure at the heart of the Bill and, again, this is an area where we have won significant gains. All social housing must meet the standards by 2011 and the private sector has until 2013 to deliver of its own volition or face regulations to force it to do so. So there is widespread acceptance of the need for reform and important steps being taken towards it and my noble friend Lord Ashley can take considerable credit for this.
However, all these disparate initiatives seem to indicate a piecemeal approach to independent living. There is a danger that they may further fragment the response to disabled people's needs. Where is the joined-up thinking between individual budgets for personal care, the piloting of personal health budgets and the individual budgets for disabled children? How do they tie in with the right to control which forms part of the Welfare Reform Bill currently making its way through Parliament?
None of these initiatives recognises the fundamental importance of advocacy to deliver independent living. Disabled people need a secure framework of local advocacy provision throughout the country to make a reality of choice and control. Advocacy services are crucial in ensuring that disabled people make choices for themselves—choices which might otherwise be made on their behalf by other people. Can the Minister tell the House whether the Government are making any firm progress in this area?
Only legislation can deliver the fundamental transformation and reform required for independent living. That is why we continue to urge the Government to seize the opportunity presented by this Bill; for it is, and always has been, a golden opportunity to deliver the transformation that the Government have promised, and rectify the flaws in legislation which create barriers to human rights and independent living.
As we have already heard, the Government need to consider the risk of leaving fundamental reform too late and not pursuing it vigorously enough. The Commission for Social Care Inspection's recent State of Social Care report warns that most people still experience a one-size-fits-all model of care that is not geared towards people's individual needs. Councils are at an early stage in transforming social care, and developments are patchy and vary between different groups of people. There are different understandings of—and levels of commitment to—personalisation by councils, partner agencies, people who use services and carers, as well as difficulties in extending pilot schemes. Those with multiple and complex needs continue to have little, if any, choice about their care. While the number on direct payments has grown, the number of people benefiting from individual budgets remains only 10,000—of whom a fifth live in Oldham, a pioneer in this field. This should be a signal that the time for pottering is over. We need to commit to reform or risk losing momentum and seeing personalisation poorly and patchily implemented.
As we have already heard, another risk is the unacceptable strain that is placed on families affected by disability the longer that the current situation persists. Another recent CSCI report found that disabled parents and their children often receive fragmented and inadequate support. Few councils are achieving the right balance between supporting disabled parents and supporting children who help look after their disabled parents. Less than a third have developed any kind of joint protocol to clarify responsibilities within the council and with other partner agencies. We know all too well the costs of not supporting families. Look at the Disabled Persons (Independent Living) Bill, and you will find measures that would clarify disabled parents' support entitlements, end fragmentation and mandate the joint protocols required to meet the needs of families in a holistic way.
More generally, there are hundreds of thousands of disabled and older people effectively abandoned by the social care system and abandoned by the health system too. What is their lot? They may be forced to rely on informal family care if they are lucky, but at huge social cost to themselves and to the carers forced to give up their jobs or their own mental and physical health. Deprived of practical support, thousands will see their dignity and independence slowly slip away until such time as their lives are at risk and costly acute care is the only option.
We could end this hardship and deprivation by redirecting resources away from dependency services and bureaucracy into a support framework that boosts independence, employability, social mobility and participation, reaping major long-term economic benefits. We need to grasp the opportunity provided by the Bill. In a general election in one year's time, disabled and older people will deliver their verdict on their satisfaction with progress so far. More than 11 million people is an electorate worth wooing.
I should like us to be in a position to demonstrate that fundamental transformation and delivery on independent living is an imminent reality rather than a distant dream.
Baroness Masham of Ilton (Crossbench)
My Lords, it is my pleasure to pay tribute to the noble Lord, Lord Ashley of Stoke. He has worked tirelessly over the years in your Lordships' House and another place, campaigning on behalf of disabled people, and he has chaired the All-Party Parliamentary Disability Group for many years. I am pleased that he has so many supporters today.
This is the third time that the noble Lord has introduced in your Lordships' House this Bill on independent living for disabled people. The Bill illustrates just how complicated and varied disability is. It may be difficult for the Bill to be successful at this time, but the noble Lord deserves a medal for perseverance. I thank him for raising yet again some of the needs of disabled people.
There are many disabilities therefore there are many needs. Disability comes into so much of our legislation and it is important that it does not get left out. Only yesterday, when the Mayor of London announced that people ought to cross the road more quickly, I wondered whether he had thought about disabled people. So many people cannot race across roads when they are elderly or disabled, or elderly with a disability. This is one aspect of independent living. At the Millbank crossing near Parliament I can only just get halfway across the road before the green man starts flashing. My electric wheelchair only goes at four miles per hour. I hope that elderly and disabled people will be taken into consideration.
Many people have been greatly shocked by the horrific treatment of children such as Baby P by local authority children's protection agencies. The Disabled Persons (Independent Living) Bill has much in it about assessments. With disability being so varied and complex, does the Minister think that the staff from social services departments and other staff who have responsibility for assessing disabled people have enough training and experience to make accurate assessments? I feel that the equipment and other needs of disabled people may be a postcode lottery. Some equipment may come under health and some under social services. These departments should co-operate to achieve the best quality outcome.
Disabled people have to be proactive if they are to manage to find their way through the maze of red tape. Some people do not have the drive, energy and ability to do this. Yesterday, at a meeting of the Motor Neurone Disease Association, I met a charming man with MND. He had been told by someone from the Wheelchair Service that, as he had MND, it might not be worth getting a wheelchair for him. How demoralising and shocking that a trained member of staff had such an appalling attitude. He told me that he had bought himself a suitable wheelchair. The Wheelchair Service is known as a Cinderella service. There is great need for improvement. I was pleased that the Members of Parliament present were also shocked to hear this. I was the only Member of your Lordships' House at that meeting. To relieve breathing problems at night for sufferers of MND, which is often a serious problem, a non-invasive oxygen pump can be of immense help and can extend life. This need has been pointed out to the National Institute for Clinical Excellence, but its assessments of equipment can be very slow indeed. This is a simple, cheap way of improving life. I am convinced that there should be a fast-track system to obtain the equipment for those who suffer from motor neurone disease.
The MND Association has written to the noble Lord, Lord Darzi of Denham, about this but has had no reply. I expect that the letter is sitting on a civil servant's desk. I should be very grateful if the noble Baroness, Lady Thornton, will look into this, as the noble Lord, Lord Darzi, is passionate about his report, High Quality Care for All. To achieve high-quality care for people with MND, one needs a fast track, with understanding, high-quality staff who know what needs to be provided without delay. I hope that the Minister will urgently look into this. I wonder how effective members of the Neurological Alliance consider the National Service Framework for Long-Term Conditions is. As some of the needs are so complex, there should be guidelines for staff and members who may need more awareness of how to make life better for many disabled people.
One of the clauses in the Bill covers discharge from hospital. This is a very important aspect. I declare an interest as president of the Spinal Injuries Association. Many people with severe injuries have to stay many extra months in much needed hospital beds, costing the NHS a lot of money, as they do not have a suitable home to go to. At the spinal injury unit at Oswestry, a good system of houses is provided by Trans House, so that people can be discharged and stay, with help, waiting for their houses to be made ready for them, thus not blocking beds. This is a halfway-house system but it needs the co-operation of people working together in health, housing and social services. This housing in Oswestry is only a drop in the ocean.
To make independent living better for disabled people, there should be communication and co-operation between statutory and voluntary organisations and service users' needs should be listened to. The existing legislation should be made to work better and disability ought to be put higher on the priority lists of PCTs and local authorities. I hope that Members of Parliament will support disabled people.
Lord Low of Dalston (Crossbench)
My Lords, having not been able for one reason or another to support the noble Lord's Bill on any of its previous appearances in your Lordships' House, it gives me great pleasure to do so today. The noble Lord, Lord Ashley, is a figure of unique stature and unrivalled authority in the disability field and it is a particular pleasure to see him here today in such good form. As others have remarked, his persistence is admirable and what he has to say is rightly accorded the highest respect. Like the noble Baroness, Lady Wilkins, I hope that he will not have to wait as long as those who framed the disability discrimination legislation in the 1980s and 1990s for his ideas to be fully taken up and implemented by the Government.
The first clause of the Bill states:
"The purpose of this Act is to ensure that disabled persons enjoy the same choice, freedom, dignity, control and substantive opportunities as persons who are not disabled at home, at work, and as members of the community".
It is hugely concerning that such a statement still needs to be made after the legislative achievements of the past few decades. The United Kingdom is widely hailed as having some of the most advanced anti-discrimination legislation in the world, yet here we are, having to assert once again that disabled people should enjoy the same rights and freedoms as everyone else.
Is this really necessary? I fear it is and that, as has been movingly attested by other noble Lords, despite the achievements of the noble Lord, Lord Ashley, and other distinguished Members of this House, this Bill is correct in its analysis of the current situation and in its provisions to address that. However, we have to make the point not only that legislation is important, but that its full and complete implementation is absolutely critical if the rights which it contains are to be delivered.
We have heard from other noble Lords about the importance of a national independent living strategy, the need for it to be properly resourced, and the role it can play in drawing together current provision and making new provision where none exists. Clause 4 calls for such a strategy to include an economic plan and a framework to deliver the strategy and, most importantly, to involve disabled people, their carers and advocates, the voluntary sector and professionals in the development of the strategy.
Clause 5 places general and specific duties on the NHS and local authorities to promote independent living. The duties in Clauses 6 and 7 would make independent living a reality by obliging local authorities to meet the needs of disabled people by enabling their access to front-line services, personal budgets and employment. The NHS will also have to take greater steps to involve disabled people and provide an appropriate and sufficient range of services.
We all know the importance of co-operation between agencies and organisations. I was pleased to hear the noble Lord, Lord Ashley, highlighting the importance of that in his presentation of the Bill. I am, therefore, particularly pleased that Clause 8 will support local authorities and the NHS in working together alongside key partners to promote independent living.
One of the biggest challenges in supporting independent living is in identifying disabled people. It is perhaps a sign of the insufficient importance with which independent living and, in a wider sense, disability in general are regarded that so little relevant information is collected and maintained by the many arms of government. We often hear that we live in an information age. If that is true, what can explain the lack of information on the numbers of disabled people, their impairments and their needs? How can we provide services that meet the needs of disabled people if we do not have accurate information about them and their aspirations? They should be able to access education, employment and the full range of cultural and social opportunities available to non-disabled people? However, if disabled people are to be able to take advantage of such opportunities, what they want has to be identified, and public and private organisations need to include disabled people in their planning and operations. I am dismayed at how often in discussions with government and other organisations it is still necessary to point out that disability monitoring and data collection is an essential prerequisite to ensuring equality, inclusivity and access. This Bill should help to remedy some of these deficiencies.
It is the question of accessibility that I know best and to which I wish to devote the rest of my remarks. Like many disabled people, I welcome the Disability Discrimination Act as a piece of legislation which creates obligations not to discriminate against disabled people, and places requirements on employers and service providers to make reasonable adjustments to meet their needs. Long lead times were set for organisations to comply, but many of them, most vexingly in the public sector—including the NHS, local government, schools, colleges and universities—fail to make their services fully accessible.
The discussion of access all too often focuses on a rather narrow conception of it purely in terms of the physical environment. The difficulties caused by steps, poor paving, inadequate lighting, badly marked or badly delineated routes and pathways, narrow doorways and inaccessible washroom facilities are important issues; but access is not just a physical challenge or about negotiating physical barriers, it is about being able to access information and services independently—in some cases with personal support to increase independence.
As a blind person, I read Braille; my notes here are in Braille. But, unfortunately, I cannot get a council tax bill, a doctor's appointment or a bus timetable in Braille. Young people in our schools cannot get text books in accessible formats. Benefit letters do not come in Braille, nor do letters with other personal, even medical, information. Even Bills published in this House are not readily accessible.
The staff in my office recently approached 22 local authorities and asked in which accessible formats they could provide information for blind or partially sighted people. Only two out of 22—I repeat, only two—had frontline staff who knew the relevant information. Most local authorities could provide large-print versions of information on request, but more than a third did not provide Braille or audio versions for people who could not read print. In a society where we expect people to participate in the democratic process, be active citizens, use new technology to access services, not miss hospital appointments, succeed in education and gain employment, we still too often make it, in the words of the Disability Discrimination Act, "impossible or unreasonably difficult" to do so for people who cannot engage by the normal method of reading print.
Making services and information accessible is a legal requirement under the DDA. Yet, the public sector still too often fails to meet these obligations. One solution, using the DDA, might be to take every public authority to court until they finally took their obligations seriously. The other solution is to embrace the provisions of this Bill to create a clear and unequivocal responsibility to make all information and services accessible to disabled people by whatever means necessary.
I welcome this Bill and wish it well as it makes its way through your Lordships' House. I have an interest in this legislation, not only in my personal capacity but in my capacity as chairman of the Royal National Institute of Blind People. In both capacities, I offer the Bill my wholehearted support.
Lord Best (Crossbench)
My Lords, like every noble Lord who has spoken, I congratulate the noble Lord, Lord Ashley, on his tenacity in bringing forward this excellent Bill. I shall address one or two comments to Part 4, on housing and planning. I welcome all the measures proposed in that part, such as allocation of social housing, a disability housing service to match the needs of people with disabilities to the accommodation that may be available for them and proper assessment of the housing needs of disabled people. I shall concentrate on Clauses 33, 34 and 35, which are all about ensuring accessible and adaptable homes. That is an absolute fundamental, since people with disabilities spend a good deal of time in their homes, and the ability to move around freely within them is essential.
I declare an interest as chairman of the Hanover Housing Group, which provides many thousands of homes for older people in particular, and also runs 15 care-and-repair local schemes that take advantage of the disabled facilities grants and adapt existing properties for better accessibility for those people with disabilities who live there.
In the 1990s, the Joseph Rowntree Foundation and its housing trust experimented with the provision of more accessible homes. I was then the chief executive of that organisation, and we worked with a number of the leading disability organisations to hone and perfect standards that would ensure better accessibility and adaptability for the future and would make life easier not just for people with disabilities and mobility problems but for everyone. That includes young families for whom the buggy needs to come in through the front door without going up two horrible steps, and older people, for whom those same two steps can provide a dreadful barrier to getting in and out of a property, especially on an icy day. All those changes to standards of accommodation can make life so much better for everyone, if only the building industry would adopt them.
Rowntree got to the point of an agreement across the piece with many disability organisations that a set of 16 lifetime homes standards would achieve that higher level of accessibility that would make such a difference. I was delighted when the then Minister for construction, Nick Raynsford, introduced changes to the building regulations, which were enshrined in the Building Regulations 2000, to ensure that every new home accorded with these better standards of space and accessibility within the home.
Since that time, two results can be detected. One is a certain amount of cheating, we suspect, on the part of some house builders in the implementation of those building regulations. I greatly welcome in the Bill the concept of a really thorough-going review to ensure that building inspectors and builders are doing their jobs in actually meeting the standards that now are enshrined in building regulations.
The other more positive change is that the Government have turned their minds—I commend the work of the noble Baroness, Lady Andrews, in taking hold of this—to taking the next step to a universal design standard that embraces all of those lifetime homes standards beyond those already accepted in the Building Regulations 2000. This really would be a helpful move. Yesterday, we heard from the noble Baroness, Lady Andrews, confirmation that the timetable is for all the housing association homes to meet these higher standards by 2011—which is not so very far away—and for the private sector house builders to follow in 2013. Those extra additions to the standards do not add anything significant to the cost, as long as they are part of the design at the outset. That is the key. If only builders would move away from their old pattern books and adopt the newer standards which incorporate accessibility and adaptability, it would not cost more than pennies at the outset.
Achieving that change will be a dramatic improvement, but I detect in the air a move on the part of many house builders to take a step back rather than a step forward, on the grounds that the construction industry is in difficulty and that now is not the time to go for higher standards. I feel in the air a move to deregulate rather than have requirements for greater regulation of the standards of new homes. I ask the Minister and all other members of the Government involved in these matters to be resolute in not listening to the blandishments of those who think that a little bit of cost-cutting might now be permitted by the Government. We have to take the opportunity—now that land values have fallen so reducing the cost of production, and now that building costs have fallen—to improve on building standards, in particular standards of accessibility, not just to improve the lives of people with disabilities but to improve the lives of all citizens in a universal form. I leave that thought with the Minister.
Viscount Slim (Crossbench)
My Lords, I thank noble Lords for allowing me to speak for a couple of minutes in the gap. I apologise for not being here at the start of this very important debate, but there were some traffic problems. I, too, thank the noble Lord for all the work that he has done to get this debate and the Bill in tune and starting to work. I very much support the Bill.
Much of my life involves veterans' affairs. Therefore, I work with disability in all its forms. I do not see any mention of veterans in the Bill. It may not be much fun to be wounded, but it certainly is a very proud thing to be wounded for your country. Special mention should be made of these great men and women who are wounded, of whom there are many today. I remind noble Lords that veterans are not just very old men and women, like me. They can be an 18 year-old or 19 year-old with no legs or limbs, or they can be blinded. They can have many disabilities. As the noble Lord, Lord Low, so rightly said, it is extraordinary that you can walk into a local council or National Health Service hospital and ask how many patients are ex-military personnel with disabilities and there is usually a stunned silence. I should have thought that in Clauses 5, 6 and 10 there should be a duty on local government and the National Health Service, with all the problems that they have, to make special mention and special lists of disabled military personnel.
I have suggested several times to various Ministers for veterans, who all do great jobs but who come and go with considerable frequency, that in local government there should be one council member who has responsibility for service disability. Even if the Government were not prepared to give an instruction on this, one hopes that they would make a suggestion and give every encouragement. Therefore, it is important to have somewhere in the Bill a couple of sentences or a small clause highlighting military disabled veterans, because once they leave the arms of the Ministry of Defence, they are thrown on the street and, unless we are careful—one has seen this on many occasions—they are forgotten and are very much left on the street. I ask Her Majesty's Government to do something really positive about that in the Bill.
Baroness Thomas of Winchester (Liberal Democrat)
My Lords, I, too, thank the noble Lord, Lord Ashley, for introducing this Bill for a third time and I thoroughly endorse all the warm words that have been said about him around the Chamber.
We are discussing the Bill against the backdrop of the Government's Independent Living report, published a year ago, as mentioned by the noble Baroness, Lady Wilkins, which has the sub-title, "A cross-government strategy about independent living for disabled people". This is an admirable document—I am surprised that it has not been mentioned more—no doubt because of the predominance of disabled people who were on the expert panel supporting the review, chaired by the noble Baroness, Lady Campbell. However, I do not think that there has been a change in the Government's position, which presumably is that the Bill is not needed because the Government envisage this strategy being put in place over the next five years.
So why are campaigners, such as the noble Baroness, Lady Campbell, and others, who have done so much to take this whole agenda forward, so sure that the Government need to legislate? Perhaps there is a clue in the number of times that the following phrase is found in the Government's strategy document:
"We acknowledge that there is a gap between national policy and people's real experiences. This Strategy will begin to fill this gap".
That is in the Executive Summary. Then, on page 21 under the heading "Consultation on implementation of the Strategy and the involvement of disabled people", we find point 15:
"Disabled people have told us there is too big a gap between national policy aims and local implementation. They also told us that they should be involved in both the development and the implementation of policies which affect their lives and services which aim to meet their needs. We are consulting on how to do this".
Finally, on page 93, point one is:
"One of the clearest messages from disabled people during the course of the Independent Living Review has been that there is a significant gap between national policy aims and local implementation. In other words, the lived experiences of disabled people, (including older disabled people), are too often too far removed from the Government's vision and policy aims".
That is why this Bill is needed, whatever the Government's vision and policy aims. There is a long way to go yet, and the noble Lord, Lord Rix, spoke about this very same point.
Many Peers have spoken of the way that the system is not responding to the needs of disabled people. Seven out of 10 disabled people get support only if their needs are "critical or substantial", and no fewer than 80 per cent of councils plan to tighten eligibility criteria further this year, resulting in further cuts in support services for more disabled people. As for children's services, a staggering 77 per cent of families with severely disabled children report unmet needs for community equipment and help with basic personal services. Another horrifying statistic unearthed by Barnado's is that 175,000 children and young people have to provide daily care and support for disabled parents. No one should blame those parents for the work that their children have to do; it is the system that is letting them down.
All these figures are likely to go up as the proportion of elderly and disabled people goes up relative to the population. Now is the time for disabled people to have their support safeguarded in a legislative framework, such as this Bill provides. As many others have mentioned, one of its most important provisions is that there would be a single assessment process for a person's individual budget to access joint funding streams. As RADAR says:
"Pooled funds are required here as without them multiple assessments, delay and fragmentation would continue to be the norm and the full benefits of individual budgets would be hard to deliver".
One of the most important provisions of the Bill is the right to advocacy, as the noble Baroness, Lady Campbell, said, or support from a nominated friend, together with community support and other forms of advice and assistance in relation to the assessment process. This is absolutely crucial, as it will enable disabled people to make considered decisions about how they want their support arranged and delivered.
The Muscular Dystrophy Campaign, of which I declare an interest as a vice-president, recently conducted a patient survey in which it found that three out of four patients and their families have no access to a key worker or care co-ordinator and that they lack support and information, which are crucial in enabling a disabled person even to start looking at independent living. Under Clause 12, both these matters would be addressed. The survey also found that 60 per cent of patients rated their transition from childhood to adult services as either poor or very poor. Essential services, such as physiotherapy, are often immediately withdrawn for teenagers between the ages of 16 and 18, and the families then experience multiple assessments and a lack of forward-planning. This matter is directly addressed in the Bill under Clause 9, which states:
"An independent living strategy prepared under this section shall also include ... specific measures to improve the transition between children's and adult services for disabled persons and to improve joint working between children's and adult services to support families affected by disability".
I turn back to the survey, which found that 60 per cent of families are not satisfied with the amount and clarity of information available to them, while three out of four carers lack any respite support, and half of those with muscular dystrophy do not see a physiotherapist. All these matters are addressed in the Bill.
Two other matters mentioned by respondents to the Muscular Dystrophy Campaign's survey are also mentioned in the Bill and are extremely important. They are, first, the portability of care packages, which would end the difficulties faced by people with complex needs, including those with muscle disease, when they move home and have to negotiate from scratch the support to which they are entitled. This is a particular problem with young people who want to go to university—a matter that I shall come back to in a moment.
The second matter, which is vital in the Bill and resonates with all those who have mobility problems, is building standards. I endorse everything that the noble Lord, Lord Best, said in a most powerful contribution. Minimum accessible building standards will make a huge impact in reducing the need for major adaptations in homes, which can be very expensive, time-consuming and stressful for the families involved. I am amazed at how unstandardised basic facilities for disabled people are, such as disabled lavatories, particularly in hotels. In parenthesis, perhaps I may also rail against the lack of rails by steps in hotels, particularly hotels which have no ramp and no lift. Hotels sometimes blame English Heritage, but I am told by an architect friend that there is nearly always a way around this kind of access problem.
Coming back to the difficulties that young people face when they are contemplating leaving home for the first time to go to university, I shall briefly tell the tale of a young man with Duchenne muscular dystrophy, whose experience shows why there is such a long way to go before an independent living strategy is truly in place. This young man, who lives in the Lake District with his parents, found the perfect university not far from his home, with a course which was just what he wanted. He started the ball rolling a year before he was due to start and found the inclusion team at the university very helpful. He held many meetings with his social worker, and care agency and all seemed to go well. But the people involved had simply not been listening to what the young man told them about the adaptations and the care that he needed, despite reassurances that they knew all about his condition. Nor had the university facilitators taken on board that they could not overload his timetable because of his need to rest. The final straw was the lack of enough funding from social services for all the care that the young man needed. In the end, he was not able to go to university and ended up back at home with his parents.
That contrasts starkly with the experiences we hear about of young people with the same condition in Scandinavia, where independent living for disabled people is taken for granted and where many young people with severe disabilities are able to enjoy their time at university away from their parents with their peer group. In order to be even-handed, I will also report a more cheerful story in this country. A man in his 40s with spinal muscular atrophy type 2 spent more than 10 years trying to get out of a residential care home. He was going round in circles because, without a house, he could not apply for a care package or certain benefits and, without those care packages, he could not get a house. About five years ago, he finally succeeded. He is now very happy and managing well with a team of about six staff working around the clock.
I do not propose to go through all the provisions of the Bill, tempting as that is. It is comprehensive in its coverage, for example, of the rights of those with mental health problems, the portability of support, and the importance of accessible housing, as I have already mentioned. Many important questions have been put to the Minister and I am sure we are all looking forward to her reply. One thing that worries me is that the Government are very good at the well intentioned language surrounding the whole world of disability but we must ensure that concrete, practical proposals are not buried under a huge superstructure of concepts, warm statements and catchy slogans, which sound wonderful but do not amount to a row of beans unless they really are carried through to practical implementation. I wish the Bill well and congratulate all those who have helped to draw it up.
Lord McColl of Dulwich (Shadow Minister, Health; Conservative)
My Lords, I, too, congratulate the noble Lord, Lord Ashley of Stoke, on introducing this Bill. As many have said, he has a long and distinguished record of fighting for the rights of disabled people.
On this side of the House, we support the main principles behind the legislation: first, that disabled persons are the best judges of their own requirements; secondly, that disabled people should be able to exercise choice, freedom and control; thirdly, that disabled children should be able to express their views freely in relation to all matters affecting them; fourthly, that independent living support should be arranged so that no disabled person is reliant on support from a child or young person which may impair their educational opportunities; and fifthly, that disabled children should be supported to express their views freely in relation to acts done or decisions made under the provisions in the Bill.
The Conservative Party welcomes the opportunity that the Bill affords to discuss some very important issues and acknowledges the case for giving disabled people the right to access and develop services that would enable them to live as independently as possible. The party's disability agenda has seven key issues. The first is to help people with disabilities to lead independent lives so that they can be helped to exercise greater control over the care that they receive. The second is to recognise and support the role of carers. The third is tackling benefit dependency. The links between disability and poverty need to be fully understood. People with disabilities can benefit from work as much as non-disabled people and will be disadvantaged in the same way if they are unable to break out of the dependency trap. The fourth issue is benefit reform, which should be based on clear principles of accessibility, simplicity, fairness, avoiding means testing wherever possible, removing disincentives to work, and sufficient flexibility to be able to make practical distinctions between those able to work and those unable to do so. The fifth point is to safeguard special schools. Provision for special educational needs requires reform. Statementing—a word I do not like but which is here to stay—has become confrontational and bureaucratic. Special schools have been closed and parental choice has been reduced. Until those issues are addressed satisfactorily, the Government should not force local authorities to close special schools against the wishes of local people. The sixth point is to ensure equality of access to healthcare. That is critical to people with disabilities. The NHS must ensure that it attaches equal value to treating patients with and without disabilities. The seventh point is dealing with the stigma of mental health, which has already been mentioned. We believe that there is a need to recognise the particular problems of those with mental illness on benefits and the challenges that they face when seeking work.
We are committed to introducing individual budgets so that people can take care of their own care needs. They will allow people to commission health and social care services jointly for themselves. Under such a system people would be granted full funding for their health needs and then be means-tested for their social care entitlement. Those budgets will especially help the millions of people with long-term conditions, who often feel that care is "done unto them", despite the fact that they often know much more about their condition than the clinicians. David Cameron has had firsthand experience of disability and knows all about the subject. He wants people with disabilities to have the same opportunities as everyone else.
As many noble Lords have said, there is uneven provision of services for disabled people across the country. How do the Government intend to deal with that? There seems to be no system in place to cover a disabled person who moves to a different part of the country. They often have to start from scratch and renegotiate a new care package from a variety of different sources.
There is a sense of déjà vu about this Bill because, 16 years ago, I introduced the precursor to this Bill, the Disability Persons (Services) (No. 2) Bill. I found Prime Minister Thatcher very supportive. She was always very concerned about respite care, emphasising what a great contribution carers made and how we should do much more to support them. Noble Lords may not be aware that it was the then Mrs Thatcher who emphasised the importance of disabled people by splitting the old Department of Health and Social Security into its two present component parts. As disabled people do not like being called "the disabled", she changed the Minister's title from "Minister for the Disabled" to "Minister for Disabled People". When I suggested that, she immediately said, "They will want to change all the notepaper", so it was agreed that they would have to use up the existing supply before printing new notepaper.
I have always been immensely impressed by how much so many disabled people contribute to society. They enrich it and they are an inspiration to us all. A severely disabled girl, who had liver disease, rickets and renal failure, could not find a job when she left school, so we created a secretarial job for her in my department at Guy's Hospital. She soon proved to be one of the best secretaries we ever had. She never moaned; she never complained. She had to be dialysed three times a week, and she insisted on being dialysed at night so that she did not need to take any time off work. The effect on the rest of the department was very impressive indeed, because suddenly no one else took any time off work. How could they? Then, unfortunately, she started to go downhill. Sir Roy Calne in Cambridge gave her a kidney and liver transplant, which was an enormous success. She took on a new lease of life. She became ordained, and when she got up to preach, everyone listened to what Emma had to say; she knew what she was talking about. A few years later, she got married. What an amazing transformation.
We have friends who adopted a Vietnamese boy of 10, who was born without eyes and thrown, literally, on to the rubbish dump soon after birth. He was rescued and taken to an orphanage, but was neglected there for many years. After he was adopted, he was surrounded by love and attention, and within two years this almost uncontrollable boy had improved so much that he could go skiing. There are many examples in this House of amazing cheerful triumphs over adversity: the noble Baronesses, Lady Campbell of Surbiton, Lady Wilkins, Lady Masham of Ilton and Lady Thomas of Winchester. What an inspiration they are to us. So many disabled people inspire us, too.
If altruism is not enough to goad us into striving to improve the life of disabled people, perhaps a touch of realism might help. About half of us will be disabled to a greater or lesser extent before we die, so we need to declare an interest in more senses than one.
Baroness Thornton (Baronesses in Waiting, HM Household; Labour)
My Lords, I thank my noble friend Lord Ashley for his passion and his determination to raise attention to this important issue. As ever, he has made a powerful case, and, as other noble Lords have noted, he has made an immense contribution over many years towards improving the life chances of disabled people, as have many noble Lords who have contributed to this debate today. They are a very powerful and convincing lobby on this issue.
In introducing the Bill, my noble friend has provided your Lordships' House with another opportunity to debate the critical question of what independent living means for disabled people. This debate does not concern simply the public services that disabled people use; it reaches further. I echo the comments of other noble Lords when I say that our biggest challenge is to change the culture and attitudes that prevent inclusion and equality.
Today, my job is to assure noble Lords that this Government continue to make progress in addressing this issue, and to put the case that this legislation is not needed. The challenge is huge, but the Government's programme of actions is making a real difference now and will continue to break down the barriers to equality. We have not stood still since the Bill last came before this House. We continue to drive forward a programme of real change to transform the lives of all disabled people and their families. We seek a fundamental shift in the relationship between disabled people and public services, which is why we are involving disabled people and many of their organisations in championing their causes and involving them more and more in the design of policy and commissioning of services.
I shall briefly set out the main achievements of the Government so far and then address noble Lords' questions. I want to give the House an understanding of our action and ongoing commitment to deliver the equality, choice and control for disabled people for which the noble Lord is so notable an advocate. I am pleased to inform the House about recent progress on the United Nations convention on disability rights. As noble Lords will be aware, the Explanatory Memorandum and command paper for ratification were laid before Parliament on
The noble Baroness, Lady Thomas, and others mentioned that, just over a year ago, the Government launched the independent living strategy, which aims to give disabled people greater choice and control over the support that they need to go about their daily lives and how it is provided. It is a commitment to a shared understanding of the principles and practices of independent living. It contains more than 50 commitments, many of which are challenging, involving as they do the need to change systems and attitudes. We are making progress in delivering the strategy, and we are committed to measuring and reporting on this annually. The work in progress includes: finding out how to encourage practitioners, including health, social care, housing and employment professionals, to adopt an independent living approach—this is very much reflected in my noble friend's Bill; creating a one-stop resource to assist practitioners and professionals with older people's independent living needs; and demonstrating new ways of working with independent advocacy and brokerage. I will deal with advocacy later.
My noble friend Lady Wilkins pointed out that the Bill looks at care and support. We will publish the long anticipated care and support Green Paper this spring. This will be followed by a period of consultation. I note that many noble Lords were involved in the creation of the Green Paper and in the consultation on it prior to its publication. The consultation will give disabled people, others who use services, their families, the public and agencies that plan, commission and deliver the services the chance to respond to the reform options proposed in the Green Paper. I do not propose to go into details, but I assure noble Lords that portability, which the noble Baroness, Lady Campbell, and others in particular championed, will be addressed in the Green Paper. Since our discussions during consideration of the Health and Social Care Bill, I have continued to keep a watching brief on this issue, and I have not let it go. I had a meeting with my honourable friend Phil Hope, when he was appointed Minister, to press on him the importance of this issue particularly to Members of your Lordships' House.
The Welfare Reform Bill, which is being discussed in another place next week and has been referred to by several noble Lords, introduces new legislation to increase choice and control for disabled people. They will have a greater say over how public resources are used to provide certain services and support. This right to control will be set out in a primary legislation framework that is less prescriptive than the Disabled Persons (Independent Living) Bill. It puts disabled people at the heart of the process and encourages a joined-up approach to improving services that will be co-produced with disabled people.
Flexibility, consultation and co-production are some of the best features of the right to control, as the noble Baroness, Lady Campbell, so rightly pointed out. The Government want to encourage innovation and co-operation between individuals and the state. The right-to-control legislation provides this flexibility by setting out broad rights to deliver improved choice and control but allowing regulations to be consulted on and designed in co-production so that we can achieve the correct right for each service and the support that comes within its scope. This sort of tailoring recognises that disabled people are, indeed, the experts in their own lives. I will listen with interest to the discussions in your Lordships' House when this Bill reaches us in due course.
In social care, last year's Putting People First sets the direction for adult social care for the next decade. It makes clear the need for greater collaboration to deliver on personalisation, signals the cross-sector consensus on the ambitions for the future, and commits all partners to working together to achieve significant change by April 2011 to enable people to retain their independence and exercise choice and control over the support that they need. Central to that transformation by 2011 is for individuals to access a personal budget. This is a clear understanding of how much is to be spent on their care or support. It allows people to exercise choice or control spending by taking a direct payment. By using an individual budget, individuals can bring a number of income streams together to create a more joined-up package of support. The Government have recently committed an extra £500 million to support councils in carrying out the radical transformation of services that is needed to improve choice and control, as outlined in the springboard report referred to by the noble Baroness, Lady Campbell.
Let us not forget that for some specific groups of disabled people, the barriers to choice and control are even greater. That is why we published in January this year our new three-year cross-government strategy, Valuing People Now, to deliver real change for all people with learning disabilities. It sets out a vision where people with learning disabilities are people first, and an agenda for making transformation and equality happen for all people with learning disabilities and their families, including those with complex needs. The strategy emphasises especially the right to access high quality healthcare. It sets out measures on staff training, on annual health checks, health plans and improving the commissioning of services so that people with learning disabilities, who often have poorer health, can lead healthy, active and fulfilling lives.
We have also launched the carers' strategy to better support the 6 million people who care for family members and friends. Equally, we must remember that many disabled people are carers themselves, and this strategy will address their needs, too. Evidence shows that the best way to enable carers to continue to care is by enabling them to take breaks from caring, and that is why we are giving councils £224 million to support carers in England through the carers' grant this year. In the three years up to March 2011, we will have given councils more than £1.7 billion to enable them to continue to develop innovative and personalised outcomes that reflect the needs of their local carer population.
User-led organisations which are led and controlled by disabled people have a key role to play in delivering personalisation and independent living. That is why we are investing over £1.6 million over two years to support the development of up to 25 action and learning sites round the country to develop best practice and share experience with others. We will announce very shortly the sites of who will receive funding this year. There are many examples not just of the difficulties people face, but also really inspirational examples of creative approaches, such as the ways in which disabled people are using their personal budgets to open up new opportunities and take control of their lives. However, like my noble friend Lord Ashley and other noble Lords, I am under no illusion that we still have a fair way to go before all disabled people are empowered to participate fully in society as equal citizens. The Government do not need persuading; we are determined to deliver real change, not just in the lives of disabled people themselves, but in the way in which society reacts to disability.
I turn now to some of the specific points raised by noble Lords. The noble Baroness, Lady Verma, my noble friend Lord Ashley and the noble Lord, Lord Best, all addressed the issue of housing, which forms part of the Bill. In February 2008, the Department for Communities and Local Government published Lifetime Homes, Lifetime Neighbours: A National Strategy for Housing in an Ageing Society. The strategy addresses the challenge of ageing and what it means for housing and planning, and the noble Lord, Lord Best, was quite right to commend my noble friend Lady Andrews on her work. DCLG has developed the Lifetime Home Standard, which will give a clear definition of the standards required in guidelines to be followed by designers. The Lifetime Home Standard will become mandatory at decreasing levels of the Code for Sustainable Homes over time. Adherence to lifetime standards will be mandatory for the whole of public sector funded housing by 2011. In addition, the Disabled Facilities Grant Programme is now helping around 38,000 disabled people each year by providing assistance with major housing adaptations. This will enable people to remain living independent lives in their own homes. This is a mandatory grant and local authorities receive an annual allocation without a specified requirement to match the funding.
The noble Baronesses, Lady Verma and Lady Masham, both spoke about issues surrounding transport. The Department for Transport is working with local authorities to ensure that accessibility planning is reflected in local transport plans and local area agreements. We intend to keep a watching brief on this. In response to the remarks of the noble Baroness, Lady Masham, I hope that the Mayor of London has taken note of her plea concerning the needs of disabled people and London's roads. The noble Baroness, Lady Verma, and the noble Lord, Lord Low, also referred to the issue of access to public places, as did several other noble Lords. She will know that the Disability Discrimination Act requires local authorities, through the disability equality duty actively to promote disability equality, including access matters for disabled people. The duty includes making reasonable adjustments to meet the needs of disabled people. I agree absolutely with the noble Baroness and the noble Lord that there is still a long way to go as regards this issue.
The noble Baroness, Lady Verma, and the noble Lord, Lord Rix, both raised the matter of personalised individual budgets, asking who is responsible for them, what checks would be made and various other issues. Putting People First was published in December 2007. Central to the transformation is giving individuals a personal budget and a clear understanding of how much should be spent on their care and support. Individuals have a choice whether to take up a personal budget or control it themselves by taking cash in lieu of services, in this case using a self-assessment process. The funding provided should be sufficient to meet the disabled person's assessed needs, including the costs associated with managing that budget. If the disabled person chooses, they do not have to manage directly their personal budget; rather, they can choose to receive a service that meets their individual assessed needs. This is about enabling people to choose the option that is best for them, while built into the system are measures of support and control.
The noble Baronesses, Lady Campbell and Lady Thomas, my noble friend Lady Wilkins and other noble Lords stressed the importance of advocacy; I absolutely agree with them. The cross-government concordat Putting People First sets out a goal of universal information, advice and advocacy services for disabled people, and we expect to make significant progress towards this goal by 2011. We are investing £520 million over the next three years to deliver this transformation, including advocacy services. My noble friend Lady Wilkins was right to remind us of how many people are in fact disabled, and who will reflect their assessment of the success or otherwise of this Government's delivery of services when they decide how to vote in forthcoming elections. She also raised the issue of the alignment of community care with the right to control. We will test the alignment of right to control services and support with community care in the trailblazing authorities and report the outcome to Parliament. Community care legislation already includes a duty on local authorities to make direct payments, with powers to direct them. We would not want to duplicate or cause confusion with the existing powers in the Welfare Reform Bill.
My noble friend also referred to individual budgets. As I have already mentioned, we are piloting these budgets and looking at how they will work. My noble friend and the noble Baroness, Lady Thomas, also asked about progress on the independent living strategy and how disabled people will be involved in its implementation and monitoring. As noble Lords know, it was published in March 2008 and contains a commitment to monitor and report on progress on an ongoing basis. The annual report of the Office for Disability Issues, published in December 2008, contains data on the progress of the ILS and will form a baseline from which progress will be measured. Following a consultation on how best to involve disabled people in the implementation and monitoring of the ILS, the Government published their paper in November 2008, which sets out what we will be doing on the Independent Living Scrutiny Group. The group is made up of disabled people who will be involved and very influential in this issue. The right reverend Prelate rightly asked whether the money will be available. The figures I have given are assured and we intend to continue to commit towards these issues; there is no question of taking the foot off the pedal.
The noble Lord, Lord Rix, raised the issue of the closure of communities. I was expecting someone to raise the question asked by the noble Baroness, Lady Boothroyd, on Tuesday. I think we may need to address this matter in a longer debate. When I was listening to that question, I was thinking that we need a longer discussion about how enabling people to be independent does not mean withdrawing support. It is not for me to say what your Lordships' House should be discussing, but it seems to me that this matter merits a longer discussion and a longer explanation of what the Government are undertaking in this area. The noble Lord also raised the Learning Disability Coalition report Tell it like it is. In the light of Putting People First and concerns about eligibility criteria, the Government are committed to carrying out a review of fair access to care. I have discussed that in your Lordships' House in the past.
The noble Baroness, Lady Masham, raised an issue about motor neurone disease and the letter. I undertake to deal with that. Officials have already arranged to meet the MND Association in next few weeks to discuss its concerns. Work is under way to discuss what we can achieve in relation to wheelchair services and this issue. The noble Baroness has only to speak and we listen very carefully to what she has to say about these things.
The noble Lord, Lord Low, is right that the UK has some of the most advanced and sympathetic legal and public policy frameworks for disabled people in the world. However, we are not complacent. We are glad to recognise where progress has been made, but we know there is a great deal more to do.
The noble Viscount, Lord Slim, drew our attention to the needs of our military wounded and disabled. I think that my noble friend can anticipate an amendment from the noble Viscount as the Bill progresses through your Lordships' House.
The noble Baroness, Lady Thomas, rightly pointed to the gap between national policy and local delivery. It is a matter of continuing discussion, debate, legislation, allocation of resources and regulation. Indeed, it is the bread and butter of trying to make these policies work. The noble Baroness also pointed to the problems faced by disabled people in the transitions in their lives, and I agree that that is right. I think she may have been slightly unfair, but I hope the Government have put their money where their mouth is on these issues.
I am very pleased to welcome the Conservative Party's agenda for the disabled and am happy that it has joined us in giving it such priority. I hope that Conservatives in local government will join us in trying to deliver it at local level too. I make the point that the Government are not forcing any local authority to close special schools. This is an issue that we have discussed before in your Lordships' House. We are committed to having the most appropriate care and location for each person.
I suggest that the work that the Government are leading, which I have briefly outlined, means that the goals that we all desire can be delivered without recourse to this legislation. I thank noble Lords for a truly inspiring debate. I shall finish by saying that one of the reasons we are not convinced of the need for legislation of this nature is that we are preparing to introduce a new Bill—the equality Bill—in the spring. It will streamline the law and will distil nine pieces of legislation into a single Act. It will support our wider work to promote equality. I thank my noble friend and I hope that I have reassured him on the progress that we have made since the last time.
Lord Ashley of Stoke (Labour)
My Lords, this is a difficult debate to respond to because a thousand points have been raised. They were diverse, but they had the same purpose: to support the Bill. I shall be brief. The politics of this debate stand out clearly. This is one subject on which we should never try to make party-political capital. That is important but, inevitably, whatever the Government in power, it is the nature of the case that they will be attacked. If a Tory Government ever come in again, they will be attacked in same way that the Labour Government have been attacked.
I do not want the Minister to think that we do not appreciate what has been done. A lot has been done. We are saying that it is not enough and not quick enough and that we mean business. We are determined to press these points one way or another in this House and in the other place. Support for the Bill is unanimous. Noble Lords on all sides of the House think we do not go far enough, and it is possible that we do not. It is important to recognise what has been done, but it is more important to recognise what needs to be done, which is why we hammer away at this. I am well aware of the experience David Cameron and Gordon Brown have with disability, so no one has any illusions about their lack of knowledge or understanding.
This debate has shown the fantastic expertise of the All-Party Group on Disability. It is remarkable that all the personal experience came through in this debate. I was very impressed by it, and I hope the Government will also be impressed. I shall leave it there. I will go through Hansard to deal all these points as best I can. The noble Viscount, Lord Slim, may rest assured that we will take on board his concerns. Either he can table an amendment, or we can, to deal with disabled ex-servicemen because they tend to be getting to the end of their lives now and there will be less pressure to look after disabled ex-servicemen. It would do a great deal for the Bill to insert something along the lines of the clause the noble Viscount mentioned.
I thank all noble Lords who spoke in the debate. It has been a wonderful experience.
Bill read a second time and committed to a Committee of the Whole House.