My Lords, I beg to move that this Bill be now read a second time. Its purpose is literally to transform the lives of Britain’s 11 million disabled people from lives of frustration to lives of fulfilment. Providing a legislative framework for rights to independent living, it is both an idealistic and a practical proposition. I have worked closely with the Disability Rights Commission, which is splendidly led by Bert Massie, and with Caroline Ellis and her colleagues. They have worked extraordinarily hard to make the Bill a success. I warmly appreciate their wise counsel and assistance. I am also delighted with the excellent report from the Prime Minister’s Strategy Unit, Improving the Life Chances of Disabled People, and its support for independent living. This gives the Government a fine opportunity to implement many of its recommendations, strongly commended by the Prime Minister.
Disabled people historically have been regarded as second-class or even third-class citizens. As the Prime Minister has said, one in five British adults is disabled and they can find themselves cut off from the opportunities others enjoy. Disabled people are more likely to live in poverty, to have fewer educational opportunities and to experience prejudice and abuse. Most have low expectations. Only 50 per cent of disabled people of working age are in employment compared with 80 per cent of the non-disabled. That one-fifth of our population is, incredibly, an underclass. We need to elevate our objective from providing subsistence to comprehensive rights of equality and independence.
Support for disabled people is fragmented, resulting in confusion and stress. Deserving people are being denied proper support. In fact, 70 per cent of our councils now offer services only to people whose needs are judged substantial or critical, so that the social security net is full of holes and those who should be included are inevitably excluded. The rights they have are strictly limited. Rights to services mainly mean help with being washed and fed rather than comprehensive rights which enable independence. For example, there are no positive rights in existing legislation to enable disabled people to choose where they live and no legal protection against them being forced to live in institutional care against their wishes, which is scandalous. There is no legal entitlement to advocacy except in limited circumstances, nor to communication support, both of which are crucial. There are no rights of support to cover a disabled person who moves to a different part of the country. They have to start all over again and negotiate a new care package from scratch. Think of all the stress and frustration involved. People with mental health problems have no right to assessment or support for their mental health needs. The notorious postcode lottery blights provision of services all over the country. It is luck rather than judgment as to who actually gets what. Fancy that, in the year 2006. It is a question of pure luck.
Advances made over the past few years with legislation have been helpful, but limited and piecemeal. It is now time to dispense with this ad hoc approach and adopt a master plan which guarantees—yes, guarantees—genuine independent living for disabled people, and we should underpin civil rights with entitlements to practical support. Disabled people have as strong a claim to a normal life as anyone else, and this Bill seeks to provide basic rights which have long eluded them. It seeks a change in attitude, in culture, in practice and in the law. The key objective is that disabled people of all ages should have the same freedoms, choice, dignity and control as all other citizens at home, at work and in the community. This means that they must be provided with practical assistance and support to participate in society and to live an ordinary life. That is not a lot to ask, but it is absolutely crucial.
The basic premise for action, confirmed by members of the independent living movement, is that disabled people need two vital things: personal assistance and accessibility. The stark alternatives are to be a burden on their families or live in an institution. If we are serious about enabling independent living, we simply have to provide those vital necessities. Under the Bill the Secretary of State will be required to draw up a strategic plan for independent living, and to promote and pursue it. Each local authority and National Health Service body will have to do likewise. The local authority will be required to compile a record of all disabled people in its area so that we know exactly who is disabled, what their disabilities are and where they live.
The Bill will place a duty on local authorities and National Health Service bodies to co-operate between themselves and key partners to provide the means of independent living. It will require them to pool funds wherever necessary to deliver the duties in the Bill. This will avoid the multiple assessments, delays and fragmentation that occur at present. There are significant economic benefits to be gained from this.
The Bill provides a clear right to a comprehensive assessment of disabled people’s requirements for assistance and support. This right to a self-assessment of their requirements is an absolutely crucial part of the Bill and will ensure that any support given to disabled people is what they want, 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—another crucial point. This ensures that no one can be obliged to live in an institution against their will. If and when the Bill becomes an Act, it will be unlawful to force anyone into an institution against their will.
The authorities will have to identify all the disabled people in their area and maintain a register. They will have to provide a wide range of assistance, such as communication aids and other forms of helpful equipment and technology, independent advocacy and practical assistance in the home and elsewhere.
There will be a new system of individualised budgets. The present range of different funding streams to help with personal care, support, equipment and adaptations will be brought together. Disabled people will be able to use their individual budgets, in the form of cash or services or a mixture of both, to spend as they wish on housing, equipment, personal assistance, transport or whatever they desire.
A crucial part of the Bill is that regulations will be made specifying minimum outcomes. This is designed to prevent any authority wriggling out of its responsibilities. The minimum outcome is a crucial part of the Bill and regulations will be made so that there is no doubt where the responsibility lies.
Of course, these changes will have to be paid for. On the other hand, we should not lose sight of the very important economic benefits of investing in independent living. As people become independent and return to work, they will be earning from employment and, as they pay taxes, there will be savings on the social security budget. There will also be a reduction in the demand for health and social services as people become active and get back to work, so there will be a transformation in people’s attitudes towards the costs.
The Bill creates a disability housing service. Each local authority will have to compile 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 will no longer be a bugbear because people will be able to be fitted to properties through this matching service. All new dwellings of whatever type will have to meet minimum standards of access. This will result in a huge saving for local authorities by avoiding the heavy costs of later adaptations.
Together, these reforms will dramatically enhance the life chances of disabled people and their families and reduce waste and inefficiency. The Bill will also promote opportunities for carers to create a truly sustainable approach to independent living.
I hope that today I have planted a seed in Parliament that will be transformed into a mighty piece of legislation, giving to Britain’s disabled people the freedom and independence they cherish and which they have been denied for too long. The Bill is a blueprint for the future, but the time to embrace it is now. In the long, slow march of disabled people to freedom and independence, they have made limited progress. They desperately need a drastic change in tempo if they are to approach their ultimate objective. This Bill is the key that opens the way for them to equality, independence, freedom and dignity. It is a great vision. Let us make it a reality.
Moved, That the Bill be now read a second time.—(Lord Ashley of Stoke.)
My Lords, it is a great pleasure and privilege to follow the noble Lord, Lord Ashley, in speaking on the Bill. I preface my remarks by saying what a visionary and important Bill it is. As in previous years, he is leading where others, and I hope the Government, will surely follow. I want to explain briefly why I believe that this is such an important Bill.
First, I declare an interest. I am the chairman of trustees of an education charity for profoundly autistic children which runs a school in Haringey. That will form the core of my remarks today. I am also the vice-chairman of the All-Party Group on Autism, which the noble Lord, Lord Ashley, addressed on Wednesday. I did not realise at the time that he was putting forward his Bill today, but I was so impressed by what he had to say, as was the audience, that I felt compelled to come along to express my support for it.
The Bill is so important for our children at the school because currently we have about 40 children in its primary-school element; gradually, however, we are filling up a secondary school, which will be equivalent in number. We have 10 secondary schoolchildren; over time, as we build new facilities with the help of Futurebuilders and many major donors, which we hope will be completed in 2008, we will have a school of 80 profoundly autistic children—40 in the secondary school and 40 in the primary school.
One of the big challenges for us as those children enter the secondary school is the curriculum. What are we teaching them? Essentially, in the years as they move towards adulthood, we will be teaching them life skills—the skills which will enable them to live independently, as far as possible, in the community. We are developing a curriculum suitable for their needs, but life skills and independent living are crucial. That is our challenge and it is faced by huge and growing numbers of children across the country.
In her study, reported in the Lancet, Professor Gillian Baird of Guy’s and St Thomas’ NHS Foundation Trust confirmed what we have long suspected. The incidence of children with conditions on the autistic spectrum is very high—one in 100. That means that in the future we will be facing large numbers of adults who are on that spectrum. Diagnosis is better and I suspect that there are also environmental reasons but at the moment, large numbers of adults are hidden. They are not being diagnosed with autistic spectrum disorders, but that will not be the case in the future. We must make sure that those children are able to make the transition from childhood to adulthood and that they are properly assessed so that they can live, as far as possible, independently in the community. That is where the Bill is so important. That is the essence of my strong support for the Bill.
Currently, under legislation, there is a real concern for children. It is likened by some voluntary organisations in the sector to falling off a cliff—when children start reaching adulthood, their supportive or structured school environment is followed by a complete absence of services and support. That is deeply worrying for many of these children, who rely on routine in such an important fashion. Under current education legislation—the Education Act 1996, as amended by the Special Educational Needs and Disability Act 2001—LEAs already have a statutory duty to make and implement a transition plan from the age of 14 for disabled young people. As a result, several agencies should be involved in a young person’s transition to adult services, but too often the parent must act as the central point of contact between the LEA, the primary care trusts, social services and Connexions. The recent make school make sense report by the NAS reveals rather shockingly that adult social services are involved in transition planning in only 17 per cent of cases.That points up the inadequacy of the current arrangements.
The oldest children at TreeHouse will shortly need transition planning to begin, so that concentrates our minds in a major way. We must ensure that every LEA is committed to effective planning and that all the other agencies get involved early, so that adult services that meet each young person’s needs can be arranged. That is why the clause on co-operation between local authorities and NHS bodies is so absolutely crucial. The Bill takes the whole of that process a stage further and would have a major effect on planning for that transition.
Generally, I am wholly supportive of the Bill. I have only one concern, about individual budgets. I hope that these proposals are taken forward giving the option of individual budgets. In many ways, in many areas, that would be welcomed by disabled adults but there are parents who will be concerned if they have to manage individual children’s budgets; that is one option given in the Bill. I am sure that the noble Lord would accept that some parents would prefer the agencies to manage those budgets for themselves. It is important, too, that individual budgets do not replace direct service provision by public agencies. Of course, that will continue. Not all parents will want to manage the budget for their child’s services, and support services need to be in place to ensure that it is not only those parents with high levels of financial skill and expertise who can benefit from individual budgets. However, that is a very small point that I am sure the noble Lord is aware of, and I strongly and warmly commend and support the Bill.
My Lords, I take this opportunity to thank your Lordships' House for the very warm welcome that I have received and noble Lords for their kind words of wisdom and advice since my introduction. I also thank all the staff of the House for their kindness in helping me move around the House. I have no sense of direction and I often think that a satellite system would be most useful.
I pay tribute to the noble Lord, Lord Janner of Braunstone, who was Member of Parliament for the constituency of Leicester West, when I was growing up. It is from him and his dedication to his constituents that as a child I was inspired to understand the real value of freedom, democracy, pride in one’s country and social justice. It is a great privilege to have this peerage bestowed on me and to seek to contribute to the proceedings of your Lordships’ House alongside the vast experience and knowledge of other noble Lords. I pray that, with your Lordships' support and guidance, I can play a small part.
The Bill raises some very important points and I welcome the opportunity for debate that it allows. Before continuing, however, I declare an interest as an independent sector provider of care to help support independent living.
Care provision for those experiencing disability at birth or from illness or age-related processes, regardless of whether the disability is physical, mental or emotional, deserves much greater support and investment. I am very pleased to see that my party leader, David Cameron, has placed great emphasis on looking at issues of care provision. Provision is currently fragmented: care levels can vary between different authorities, the systems are often very complicated and bureaucratic, and duplication in some services can lead to great confusion about who is in charge of specific services. The sector is very much the poor relative of the health service and responsibilities are often divided among many partners—the health service, social services and the independent providers, all of whom have budgets which leave them strapped for resources and who most likely cannot provide the care and support that many of us who are able-bodied so readily enjoy.
The Bill raises a debate on life choices and opportunities, about access to services that enable people to live as independent and full a life as possible. However, I believe that the debate should also include the contribution made by non-paid and paid carers who are often the most important factor in the service package provided to support independent living.
Life expectancy has greatly increased because of medical achievements. As it continues to increase, ever greater numbers of people will suffer age-related disability. I do not think that the resulting strains on services have been factored into the forecasts for care level requirements. Huge shortages of professionals already exist, including occupational therapists, district nurses, properly trained social services staff and carers. With the additional factor of people’s desire to remain independent but with support in their homes, it is easy to see how many will find themselves failing to access services that should allow such arrangements to be a right and not just an aspiration.
I return to the role of carers, both paid and non-paid. Carers save the state huge sums by providing the support and the care that big institutions often cannot provide. Yet, time and again, people are failed by the systems under which they live. Respite care is often a lifeline for these families but is so difficult to access. It is valiant of political thinkers to try to evaluate the value of care support, but such evaluations are valueless if they do not include the offset in real value that carers bring by supporting disabled people’s desire for independent living.
I could offer noble Lords several examples from the care that I provide but I shall provide only two. The first concerns a rather tall lady with a wheelchair that is totally and utterly unsuitable for her body length. Her feet drag if the wheelchair is pushed. She is therefore confined to her house and completely limited regarding activity outside it. She has been waiting months for someone to come and assess her for a new wheelchair. The saddest part is that her situation was poorly assessed initially; she certainly has not grown several inches in height during or after assessment. So, her only contact with the outside world consists of my two carers who attend her basic needs three times a day. There are many such tales. Our discussion on the Bill will highlight the failings that we need to address before we can find new and better solutions to support people with independent living.
In conclusion, I thank noble Lords for giving me the opportunity to speak in this debate. Many of the issues will be debated further and I should like to contribute to that debate. This area of concern is very close to my heart. Day in day out I try to enable people to lead as independent a life as possible and I know the difficulties that they and their families face trying to access the means to help them to do so.
My Lords, it is a pleasure and an honour for me to congratulate the noble Baroness, Lady Verma, on her moving maiden speech. The noble Baroness is a campaigner for the rights of disabled and vulnerable people and on women’s matters. She is an important addition to your Lordships’ House. She comes from Leicester. I am sure that as a Member of your Lordships’ House, and with her campaigning spirit, she will help to solve many problems.
I thank the noble Lord, Lord Ashley of Stoke, for initiating the Disabled Persons (Independent Living) Bill in your Lordships’ House. I have the greatest admiration for the noble Lord, who with the noble Lord, Lord Morris of Manchester, has campaigned for years in both Houses of Parliament on behalf of disabled people. Other long-term supporters are also speaking in the debate. It is so good that the noble Baroness, Lady Royall of Blaisdon, will reply to the debate as she also understands the problems of disability.
I declare an interest as president and founder of the Spinal Injuries Association and as a paraplegic. As with all voluntary self-help organisations, we devote a great deal of energy to raising funds to survive. We have some wonderful supporters. Our aim is to help support our members who are paralysed through spinal injury from the neck or back down. We are a support organisation for members, their families and friends. We encourage people to pick up their lives after devastation. Our first publication was a book entitled, So you are paralysed, which sought to encourage independent living and to show that even though you are paralysed, life goes on, and with adaptations it is a new beginning.
I founded the SIA because when I left hospital in 1959 after breaking my back I found no support group for people severely disabled through spinal injury who have the special problems of the three Bs: bowels, bladders and bed sores. There was little information on daily living needs such as design of suitable housing, lightweight wheelchairs, suitable clothing, access to buildings, recreation facilities, travel and so on. With legislation over the years we have progressed a long way, but not far enough. That is why this Bill is necessary.
Severe disability covers a multitude of varied and complex conditions, both physical and mental. This Bill sets goals to be aimed at, but I can see that there are many mountains to climb. Severely disabled people cannot climb, so they have to have help from society to enable them to reach their potential in daily living.
Many organisations for disabled people, special groups representing serious illness such as cancer, spinal injury and motor neurone disease, and hundreds of organisations support this Bill. Only this week, I heard of two societies that I had not heard of before. One is the Scleroderma Society. It is for a condition where the skin goes like leather and the immune system packs up. It is very dangerous if it attacks the internal organs, and the cause is unknown. The other is the society for Epidermolysis Bullosa, which is a rare genetic condition. Those orphan conditions need support, help and research.
There is concern that dermatology wards have closed and the number of beds has been reduced. All specialised conditions, and there are many of them, need specialised medical and nursing support, without which independent living cannot proceed and prosper. Independent living means ensuring that disabled people of all ages have the same freedom, choice, dignity and control as other citizens, at home, at work, and in the community. It does not mean living by yourself or fending for yourself. It means having rights to practical assistance and the support to participate in society and live an ordinary life.
The existing statutory rights and entitlements in relation to social services are not delivering the means for independent living. In some cases, they act in complete contradiction and are subject to financial restrictions and draconian means-testing. The assumptions that underpin their design anddelivery focus on managing vulnerability, risk and dependency, rather than supporting choice, control and participation.
On Clause 3, which contains the definition of independent living, the Guide Dogs for theBlind Association believes that the definition of “independent living” could be strengthened by a reference to “independent functioning” as a desirable outcome for disabled people. It would welcome the inclusion of a specific reference to rehabilitation in the Bill. It could provide a definition that puts the restoration of independent functioning at the heart of the service. Does the noble Lord, Lord Ashley, agree?
Macmillan Cancer Support welcomes the Bill’s commitment to effective, supportive palliative care. One of the main complaints of cancer patients is that they feel abandoned by the system on leaving hospital. The Bill would ensure that National Health Service bodies and local authorities worked in a joined-up way to provide a holistic approach to supporting cancer patients throughout their cancer journey.
The Bill would give an explicit right to all disabled people to decide where they live and die; one has to say “when possible”, as sometimes circumstances beyond the control of carers do not allow that to happen.
The Spinal Injuries Association welcomes the idea of pooled funding. Disabled people are often caught between two agencies that both say that it is the responsibility of the other agency to fund the service that is being asked for. SIA often finds that many people have a problem when it comes to being discharged from hospital. A newly injured person can need a great deal of support when leaving hospital, and the assessment process is tackled in the Bill. Get the assessment right and the person can get on with his or her life; get it wrong and it can be miserable for that person.
One of the biggest problems that causes bed blocking in spinal cord injury centres is a lack of appropriate housing. There should be adequate housing so that when someone becomes disabled they are not forced to stay in hospital or forced into a residential care home until a house becomes vacant. There should be more suitable housing across the country.
The Bill would also bring about an end to the unfair postcode lottery that exists around the country regarding the Wheelchair Service. The noble Lord, Lord Warner, knows only too well that this is happening—and that was explained so well by our maiden speaker. The Wheelchair Service for severely disabled people is vital for their daily living. This is so important that it cannot wait for this Bill to become law. An overhaul should take place now so that those people who have to stay in bed can get a suitable chair and move about their house and get into the community.
A devastating disorder is motor neurone disease, MND. It progressively attacks the body, removing the ability to walk, talk or feed oneself but the intellect and senses usually remain unaffected. Respiratory, muscular weakness attacks most people with MND as their disease progresses. Non-invasive ventilation can give support. It is provided through specialist respiratory centres. The Motor Neurone Disease Association believes that more people with MND must have access to home ventilatory support services that adequately support their needs. This will enable people with MND to live in their own homes longer with a greater degree of independence and a higher quality of life. We are far behind Japan with this key service.
The Bill includes people with a mentalhealth problem. As a member of the All-Party Parliamentary Group on Prison Health, I cannot end without saying that, despite all the health problems in prisons, such as drug abuse, hepatitis C, HIV and alcohol disease, mental illness is of the greatest concern. Links between prison mental health services and those outside must undergo rapid and radical improvement. If not, there will be more disasters and we have had enough.
This Bill poses a huge challenge. I hope that this country will rally and give disabled people a chance to succeed in independent living. I have given only a few examples of the needs of some disabilities. There are thousands more. I wish the Bill well.
My Lords, I join other noble Lords in congratulating the noble Lord, Lord Ashley of Stoke, on his vision and tenacity in introducing this Bill, which I greatly welcome. The Disability Rights Commission is particularly to be congratulated on all its work in the preparation of the Bill, and when—not if—it is enacted, it will be one of the finest achievements of both the noble Lord and the DRC. I also congratulate the noble Baroness, Lady Verma, on her interesting maiden speech.
The hopes of all disabled people, especially those involved in the independent living movement rest on this Bill and they give it their strongest support. They do so because it is they—disabled people with high support needs—who know only too starkly, day by day, the yawning gap that lies between the current rhetoric of the policy on independent living and the daily reality of their lives. As the DRC points out, far from being given dignity, choice and control over their lives, the current entitlement of severely disabled people to social care amounts to little more than being washed and fed.
When I first became disabled in the mid-1960s, the only prospects for people who needed help with their personal care were to be looked after by their families, to marry their nurse, or to end up in residential care. Happily, since that time, the Independent Living Movement has been developing and growing in influence. Its driving force is severely disabled people’s desire to have choice and control over their lives so that they can live the lives that they want.
Throughout the years, various individuals and groups have used their ingenuity to find solutions so that they can live ordinary lives in the community. I refer to pioneers such as Ken and Maggie Davies, both tetraplegic, who developed the Grove Road Housing Scheme, whereby non-disabled tenants were given housing in return for providing personal care. Ken and Maggie then went on to establish Derbyshire's Centre for Independent Living. John Evans, Philip Scott and the late Liz Briggs managed to persuade Le Court Cheshire Home to let them use the funding for their residential care to hire their own personal care assistants so that they could move out of care and into their own homes. That group started the Hampshire Centre for Independent Living. From those early beginnings in the 1970s, today's direct payments scheme was born.
Over the years, Governments have recognisedthe glaring good sense and justice of what the independent living movement was calling for and have adopted much of its rhetoric of choiceand control. But the legislation lags far behind, and today's social care structures lamentably fail to provide the necessary framework for independent living. In fact, as the DRC points out, the existing statutory rights and entitlements in relation to social care often act in complete contradiction to delivering the means to independent living.
That is why the Bill is so crucial. It will amend current community care legislation so that it can begin to meet the demands of government policy on independent living, user choice and of people taking control of their own health and well-being. I am sorry for the cliché but it will make it fit for purpose, which is far from the case now.
As a briefing from the Guide Dogs for the Blind Association points out, 70 per cent of councils now offer services only to people whose needs are judged as critical or substantial, using the criteria set out in Fair Access to Care Services. Most visually impaired people are not judged to have this level of need, so are left in circumstances which diminish their dignity and quality of life. What is more, it is estimated that in the coming year eight out of 10 councils will tighten their eligibility criteria further, meaning cuts to support services for many blind and partially sighted people.
The Bill is wide-ranging and I particularly welcome Clause 3, which reforms the definition of disabled people, as was recommended in the Prime Minster's Strategy Unit report, Improving the Life Chances of Disabled People. The current definition used for community care legislation is still based on the outdated terminology of the National Assistance Act 1948, which excludes many older people and people who need support because they are ill.
I also welcome the emphasis in Part 2 on the duty of local authorities and NHS bodies to co-operateto promote independent living, especially the requirement that they pool funds wherever necessary to deliver the duties in the Bill. Particularly welcome is the requirement for local authorities and NHS bodies to build capacity and support the long-term sustainability of user-led organisations at grass-roots level, including centres for independent living. I declare an interest as co-vice chair of HAFAD,my local disabled people's organisation. These organisations provide not only essential services, such as personal assistance advice and support and benefits advice and advocacy, but a place where disabled people can test out their ability to return to the employment market. Most importantly, they provide peer encouragement, confidence and support.
One of the most important elements of the Billis the provision of one single, self-directed and comprehensive assessment of an individual's needs for practical assistance and support. This will end the bureaucratic nightmare of multiple assessments which many disabled people have to endure, and which are not only stressful but an appalling waste of resources. As the DRC points out:
“To get support, whether in education or to improve their homes, disabled people face more bureaucracy than an average small business”.
Two more provisions that I would highlight are the right to advocacy and the right to portable support, so that disabled people are not trapped in one locality because of the impossibility of transferring their care package.
However, I want to concentrate on the housing provisions in the Bill. It is essential that the Government are persuaded that they must act to address the housing crisis for disabled people and those with long-term health conditions. Unless they do so, all the other attempts to ensure that disabled people become equal citizens by 2025 will be in vain. With an ageing population the situation can only get worse.
There is a housing crisis and one to which we have become shamefully inured. Approximately half of all disabled children live in unsuitable housing and 70 per cent of families with a disabled child say that their houses are unsatisfactory. According to the 2003-04 survey of English housing, there are 329,000 people with a medical condition or disability living in housing that is unsuitable for their needs. That does not mean some slight inconvenience. It means that someone has to be carried up and down stairs each time they need to use the bathroom or that they have had to take over the family sitting room for a bedroom, with all the indignity of constantly having to ask for the commode to be emptied. It means elderly people never moving from their four walls for months on end because there is a flight of stairs outside the front door. It can also mean disabled people living in such a restricted space that their personal assistant has to share the bedroom with them. In my own borough one lady’s PA had to sleep on the living-room floor, which is hardly conducive to a satisfactory caring relationship.
To my mind, the provision of accessible housing is the most essential building block in the framework of independent living and in giving people choice and control over their lives. Yet the Government continue to allow the building industry to regard it as a voluntary matter. We will be stuck with the inadequacies of the current housing stock for decades to come, so if we are to have any hope of alleviating the housing crisis for disabled people, the Government have to take firm action. The London Plan puts a demand on developers and builders that all new housing, of whatever tenure, be built to lifetime home standards and that 10 per cent be built to the higher wheelchair standard. Builders and developers do not like it, but it is fair and they are all in the same boat. They know that that is the price of doing business in London. As far as I can see, it does not seem to have deterred them.
However, in a Written Answer to me on 21 June this year, the Department for Communities and Local Government stated that it had no plans to adopt a similar clear lead for the building industry nationally. Instead the Government are relying on the voluntary provision in the new code for sustainable housing to persuade the private sector, which accounts for 90 per cent of all new housing each year, to build new houses to lifetime home standards. What is more, while they may pride themselves on having incorporated lifetime home standards into Part M of the building regulations, the standard is a non-mandatory part of the new code for sustainable housing, so it may not even be applied within publicly funded housing. To date, the housing market has lamentably failed to provide for our long-term needs as frail human beings. What hope is there that it might have the inclination to do so now?
For those reasons I wholeheartedly support Part 4. Clause 31 would require all local authorities to operate a disability housing service so that our scarce current resource of accessible and adaptable housing was used to its best advantage. That would help to ensure that local authorities match the needs of disabled people to the housing stock that might meet those needs and end the current waste. At the moment, many adapted properties are let to non-disabled people, as housing departments strive to meet the targets for void turnaround times. An analysis of lettings in the social housing sector over the past five years by CORE—that is a system developed by the Housing Corporation and the National Housing Federation—found that on average only one in six wheelchair-standard dwellings were let to a household containing a wheelchair user, despite the overwhelming demand.
Clause 32 would require local authorities to have regard to the housing needs of disabled people when conducting their housing strategies. Together with Clause 31, this will build a more accurate picture of the extent of disabled people’s housing need. Clause 33 would require the Government to ensure that building regulations, which govern the design of all new housing, produced housing easily adaptable to the widest range of people, so that it meets both their current and any future needs.
The lifetime home standard is our current blueprint for this. Its mandatory enforcement is essential to begin to meet so many of the Government’s policies. Not only would it save money on disabled grant facilities expenditure, it would reduce avoidable admissions to health or social care and radically reduce delayed discharges. Research from Northern Ireland, where the lifetime homes standard is mandatory for all publicly funded housing, has found that adopting the standard has significantly reduced the incidence of falls in the home, which currently costs the nation £130 million a year. Clause 34 would help ensure that the building regulations were effectively enforced, and academic research has found that Part M—the access requirements building regulations—is regarded as half-hearted and poorly interpreted by builders.
Finally, Clause 35 would ensure that accessible housing was incorporated at the planning stage, and further developed at the later building control stage, of all new housing developments. Taken together, these measures to improve access to housing for disabled people will not only begin to address the Government’s political rhetoric, which stresses the importance of developing an inclusive society, but help to meet the Government’s wider policy objectives of better health and employment opportunities, reduced admission to health and social care settings, and the promotion of independence.
I sincerely hope that the Government will give the provisions of the Bill their fullest support. Indeed, I fail to see how the Government hope to fulfil their policies of social justice, and their vision of disabled people living as equal citizens by 2025, without it.
My Lords, I give my warm support for this hugely welcome and much-needed Bill, so clearly and comprehensively described by the noble Lord, Lord Ashley of Stoke, and so cogently argued for by other noble Lords, from different sides, with a wealth of experience. This is not a very wheelchair-friendly microphone; the other one used to be more moveable.
I must declare a close interest, in that I have for the past four years needed increasing amounts of help with personal care: washing, dressing and getting out of, and now getting into, bed. I am in receipt of a higher rate of disability allowance, which in no way covers all the costs. I do not qualify for any further financial help. I add this only to make it clear that this is not a personal moan, but one on behalf of all those who cannot manage and are not in control of their lives. I hope my remarks will dovetail with, rather than repeat, those of the noble Baroness, Lady Wilkins, who speaks from a wealth of experience in independent living.
The people using social care services now feel that those services are often inadequate, inflexible and focus on what Peter Beresford, of the service user network Shaping Our Lives, describes as,
“providing bodily maintenance at best, keeping people within their own four walls rather than offering them social support to enable them to be part of the wider world”.
Hence there is so much wasted potential and so many examples of extensive equality gaps between disabled and non-disabled people. Many people and families, as indicated by the noble Lord, Lord Ashley, receive no support at all from the state until they reach crisis point. This year, many disabled people will find services withdrawn as councils struggle to balance the books. The system is in crisis and it can only get worse as our population ages. As the noble Baroness, Lady Verma, mentioned the many informal carers in her thoughtful and experience-based maiden speech, I shall mention the young carers—12 year-old schoolchildren, some with learning disabilities—that councils rely on. I hope that an amendment to the Education and Inspections Bill will help schoolsto support these children. It is, however, totally inappropriate that they should be relied on at all.
Rationing services is justified on the grounds of scarce resources, but huge resources are wasted on what Bert Massie, the chair of the DRC, has called,
“a cat’s cradle of costly red tape”,
and are tied up in block contracts and costly residential provision. We could support more people to achieve truly independent living by redirecting those resources into the system proposed by the Bill, as other noble Lords have mentioned. There ishuge support for the Bill from individuals and organisations across the board because it is rooted in people’s experiences and delivers the new approach they want. Disabled people must have control over how, when and by whom their personal assistance is provided. Inflexible support makes it difficult, if not impossible, to work and participate in public and community life.
I hope the Minister will give the matter of earned income some thought and reply on it. At present, earned income is disregarded for home care charging and independent living fund payments—my noble friend Lady Wilkins successfully campaigned for that—but not for other forms of support. The report Improving the Life Chances of Disabled People highlighted the continuing barriers to work thrown up by the current system. A disabled person living in residential care faces significant financial disincentives to seeking paid employment, as he would be able to keep only £20 a week of his earned income before it has to be used to pay the residential home fee. In a footnote, the report stated:
“While the numbers of disabled people living in residential homes who would be able to work are small, the Strategy Unit did receive evidence that there are some in this situation”.
So we are talking about only a very small number of people. The report also stated that,
“there should be a national charging policy which so far as possible minimises financial disincentives to seek paid employment”.
Thus the policy on disregarding earned income for community care charging,
“will need to be extended to the means test for … residential care”.
Will the Government act on this as a matter of urgency? It would not cost very much, but would make a massive difference to the people concerned. I hope when the Minister answers she may be able to respond on this or will indicate that she will look into it. I think it could probably be done without the Bill. I do not know whether primary legislation would be needed to change this. I would be interested to know whether we have to wait for the Bill, because this would concern only a small number of people. To give an example, a man of 28 who has lived in residential care for the past five years—although he was told that it was only a temporary measure—is a first-class honours graduate in geophysics from the Open University. He has recently been headhunted for two jobs designing websites accessible for disabled people. He has had to refuse and is doing voluntary work designing websites and teaching IT in a school once a week.
If individual budgets and self-directed support are to work effectively, we need a solid infrastructure of information, advice, advocacy, expertise and support. For that reason, the life chances strategy pledged an independent living centre for disabled people in every locality by 2010 to help make that a reality. However, at the moment, centres are closing because of lack of core funding and inequalities in the contracting process, and there is no plan to secure this key recommendation. The Bill requires local authorities and NHS bodies to develop, support and sustain local user-led organisations, including centres for independent living, and to foster partnerships between them.
I passionately hope that the Government will support the Bill. It does everything that they say they want to happen, and more. Disabled people welcomed the commitments to independent living in the White Paper on life chances, but there is a danger of those commitments coming to be viewed as nice rhetoric with no prospect of being turned into reality. The concepts of choice, freedom and independent living litter many a government policy document, but there is no reference to them in community care law. If we want to make independent living real, we need a new law that reorients our whole social care system towards independent living. That is precisely what the Bill would achieve, so I hope that it has a speedy journey into law.
My Lords, much well respected research—for example, that headed by Professor Sir Michael Marmot at University College London—has clearly demonstrated that lack of autonomy in decision-making, lack of control over one’s life and lack of feelings of self-respect and status can shorten one’s life by several years. We know that disabled people tend to live shorter lives than able-bodied people. How iniquitous it is, therefore, to rob people of the autonomy that we all ought to take for granted, sometimes thereby robbing them of a crucial aspect of quality of life and, sometimes, of years of life itself. That is one reason why I congratulate the noble Lord, Lord Ashley, on his Bill, which is of the utmost importance and relevance to disabled people of all ages, as well as to us all. His vision and leadership in this field and the work of the Disability Rights Commission in preparing the Bill are to be admired.
I declare an interest as patron of New Beginnings, an alliance of organisations from all sectors that encourages people into work and, once in work, to have a career and develop it. I am also a patron of SHARE, a London initiative providing vocational and skills training for people of all ages with physical and mental disabilities—sometimes very severe ones—and chief executive of a think tank. I am vice-president of Age Concern, where we continually consider the impact of the ageing of society on people of all ages and on society as a whole.
Independent living is a policy priority. We know that existing demands on carers, usually family members, will increase and that the increasing care needs of an ageing population will mount up if we do not do something to get our priorities right. Evidence consistently shows that people want to remain independent as long as they possibly can.
The Bill is welcome because it recognises the right of disabled people to the same control, freedoms and opportunities to make choices as the rest of the community has. It gives people the right to choose to have direct payments and thus determine how their services are delivered. It is inclusive; it demands inclusivity. It covers people of all ages, thus removing some of the iniquitous distinctions in support for people aged 65 and over. It is now well known that, if you acquire a disability, you had better do so before you are 64, otherwise you will be deprived of many of the benefits that other people can take for granted. It recognises that discrimination is the single biggest factor impacting on the mental health and well-being of older people in this country.
The Bill gives disabled people a single assessment of their needs. At the moment, we know that the silos in departments and among authorities responsible for providing services prevent many people from getting the services that they need—certainly in the way that they would like. It gives people some choice as to how services are delivered, which gives them autonomy and a sense of control that they have never really experienced before. At last, it places a duty on statutory authorities to co-operate, to pool resources and to promote independent living.
The Bill would remove the scandalous current situation whereby private and voluntary sector homes do not come under the definition of a public authority with regard to the Human Rights Act. We know that there are cases under review at the moment in which people have been treated appallingly because of that awful loophole in the law, which I know the Government want to do something about—I hope that the Minister will be able to assure me that the Bill would get rid of it.
The Bill will also allow for review of care for those people who are in institutions against their will. That is an abuse of the right to autonomy, which is what we are talking about, but it is also an appalling situation when people who would like, and need, to be in some form of institutional care, because they cannot manage in their own home, cannot always get access to that care because of a shortage of places. The Bill would remove a lot of unfairness in that respect.
The Bill makes the case for a proper debate on the very important issue of how care is funded now and, more important, how it will be funded in the future. But this is not just a Bill that will increase the cost to the nation; it will relieve a lot of pressure on carers—60 per cent of informal carers are women still—and as a spin-off it will give them a chance to participate more in the workforce. It will therefore promote gender equality and better family life. We know the difficulties that many carers experience in trying to fulfil multiple roles in difficult situations. The Bill will also bring social and economic benefits in later life to many people who at the moment are excluded from many such benefits.
I wish the Bill a successful passage through this House and another place. It will help to ensure a better quality of life for people in our society who deserve no less if we are to be called civilised.
My Lords, the noble Lord,Lord Ashley, has displayed once again his key parliamentary quality: persistence. He has not let the issue of disabilities rest. He has been battling away for considerably longer than I have. At times, I think, “Haven’t we done enough? Haven’t we pushed the Government far enough?” But the noble Lord comes back again and again. I congratulate him and those who have worked with him on the Bill.
When going through the Bill, you discover that there is nothing new there. Every aspiration has been accepted by all Governments that I have seen while in this House and by all parties at various times. The problem—and this is a problem of government, not of a particular party—is that the issue is “difficult”, or does not “fit in”.
I went through the clauses, deciding which was my favourite. It is Clause 5, the smallest one:
“General duty of local authorities and NHS bodies”.
Making bits of government work together to achieve common objectives is probably one of the great targets that Parliament should aim for. The Chinese walls of Whitehall and other parts of the government system are sometimes so dense that nothing happens between them. Ministers have a great responsibility for bridging those walls, or punching holes through them—whatever is required to get there. When an Act takes on that responsibility, it will have to tackle probably the major cause of inactivity among government departments, where the aspiration is there, and make the departments talk to one another. They might then realise that, once they get out of the “my little budget” zone—and it is usually no more than that—they still have a responsibility to continue, not just if they are pushed by a persistent Minister.
Having got that little rant out of the way, I shall consider the rest of the Bill. It is valuable, because it addresses the tendency of us all to be slightly protectively condescending to someone whom we do not quite understand—the “Does he take sugar?” attitude that is there in all of us, in a way. We must fight against that. Those whom we do not understand we are slightly frightened of—slightly wary—and we think, “Maybe this is safe for you. Maybe you’ll be worried out there”. As my noble friend said, the problem is when parents get frightened. Parents are usually the initial carers of most of these groups. Most of the bodies that look after and support people with disabilities usually start with parents as the formation base.
We have to remember that people are individuals first and foremost. I hope that this Bill will be a step forward for disabled people by allowing them to organise their lives and occasionally get it wrong or make mistakes—or get something of which we do not approve, which will be more normally the case. The emphasis on advocacy, support and information that runs through the Bill is its underlying strength. The Government must find out who needs help. These things will draw everything together to ensure that, if we co-ordinate help, it will go to the right people.
The current service of help and support is effectively a mirror or reverse image of battlefield medicine, where those who are least badly damaged are patched up first in order to get them out again. We wait until something is critical and broken down before doing anything. In particular, the health service finds itself a catch-all for everything that has gone wrong. We incur costs at the extreme end because we do not intervene earlier. The Government should give advice and support to enable people who can work to do so. If that is not possible, people should at least be able to organise their lives so that they are fulfilled and do not have unnecessary problems associated with mental illness. People want to interact positively with the rest of society. If that is done, many costs will be avoided. There could be, for example, acute support service costs if intervention is incorrect.
If the Government can assure us that some of this will be taken on board—in the Bill, co-ordination and advocacy immediately grab me—there will be no need for the noble Lord’s Bill. However, I suspect that the noble Lord will need to carry on battering and using his persistence, and that we will need to go through Committee stage in order to at least drag out a clearer idea of the Government’s thinking on how these needs will be met.
The noble Lord is continuing in the rich vein of form that he has had since I came to this House. He makes sure that the Government are kept up to the mark and that those of us who have less natural persistence and a less keenly felt sense of purpose carry on. This Government can safely say, “We have done more than any other Government”. That is true, but previous Governments could have said that, too. We could do this almost Parliament by Parliament, as we build on law that has been passed by previous Governments. We have to make sure that we continue to apply this. There are no new ideas, although these are well put together in one new form. I hope that the Government and the noble Lord, Lord Ashley, will give an assurance that we will have further discussion on the Bill and that the Government will tell us exactly where they think they have got in their independent programmes for meeting the ends that are brought into focus by this Bill.
My Lords, I thank the noble Lord, Lord Ashley, for introducing this subject today. He would be quite in order to be extremely gratified by the many speeches that he has heard in praise of it. The Second Reading of his Bill has also persuaded my noble friend Lady Verma to speak to us for the first time, drawing on her particular—I am tempted to use the word “peculiar” in its 18th-century sense—knowledge of caring, carers and the establishments in which they operate. I hope that we will continue to have her advice when these subjects come up, which she will find they do quite regularly in your Lordships’ House.
Your Lordships will have heard my starting point in discussions about disability many times, but it does no harm to restate it. The noble Lord, Lord Addington, almost did so. My fundamental belief is that disabled people are people first and disabled second. From that, it follows that any rights that able-bodied people have are automatically transferred to disabled people. Therefore I agree with the noble Lord, Lord Ashley, that it is important that disabled people should be empowered to have access to those rights—in my view, this is really an access Bill as opposed to a rights Bill. The obvious example is access to transport, with which we dealt at length in the Disability Discrimination Bill over the winter of 2004-05. Being able to get about is quite clearly part of independent living. The Royal National Institute for the Blind has made the point forcefully by stating that people are frequently made housebound by their blindness.
That brings me specifically to this Bill. I am glad that in its briefing on the Bill, the Disability Rights Commission stated:
“Independent living means ensuring that disabled people of all ages have the same freedom, choice, dignity and control as other citizens at home, at work and in the community. It does not mean living by yourself or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life”.
The DRC goes on to say that social services arenot delivering the means for independent living. I certainly agree with that. However, I am not convinced that a change in the law is necessary. When the DRC goes on to talk about means testing, I am in some difficulty for two reasons: first, because all our citizens are means tested before they get access to a whole range of social security benefits, and secondly, because of the inevitable expense that would arise.
The Government are rightly proud of the extra moneys they have given to the NHS over the past few years. The problem, as we have all recognised today, is that not enough is being used for the purposes we are currently espousing. It is deflected into other parts of the health service. The Bill and the noble Lord, Lord Clement-Jones, propose a joint fund, locally created between the NHS and social services which would be drawn upon to make the lives of disabled people easier. That also suggests that rather than statutory services, individuals should get a grant to be applied outside the state sector for the services they need. While I accept that the two items, indeed the whole Bill, are, as the noble Lord, Lord Addington, almost put it, a counsel of perfection for disabled people, how practical would these two ideas actually be? How can we be sure that the personal fund would be spent on the things that particular disabled people are assessed as needing? On an NHS/social services fund, I can certainly see the logic in it. However, has the noble Lord thought this through? What percentage would the NHS or the local social services department contribute?
Many years ago, as the noble Lord, Lord Ashley, will no doubt remember, I returned from Northern Ireland singing the praises of the four area health boards, which of course combine health and social services in a single entity. Almost total condemnation was visited upon me for suggesting that they should be joined into one statutory service here. I have not reneged on that position. I still believe, although it is not the position of my party, that that is the answer to joint funding, not that proposed in the Bill. I trust that I can now persuade the noble Lord, Lord Ashley, and other noble Lords to join my crusade—which, incidentally, is now supported by the former director of social services in my home county of Somerset.
The Bill also covers employment, and I welcome the Government’s belated decision under the Welfare Reform Bill to seek to ensure that weight is given to what people can do rather than what they cannot. No doubt we will be debating this in the months to come and it is hardly appropriate to go into the detail now. Suffice it to say I believe there are people currently receiving incapacity benefit who are perfectly able to undertake at least some paid or voluntary work. In this connection, I note Rethink’s complaintsabout telephone claiming, which it believes may discriminate against some people with mental illness. However, I hope that the Minister will tell us about other methods of claiming. Would the Benefits Agency accept an advocate, especially in a personal interview? The Mental Health Alliance makes this point and I can see no reason why not, nor why a change in the law should be necessary to achieve it.
I should emphasise here that as disabled people are a part of our wider society, so any policy that evolves should include them as part and parcel of that policy, not an embarrassing add-on. Disability is not a separate and distinct issue; it should be integral to government thinking. It certainly is as my party develops its policies. People with disabilities have much to contribute to society—as, indeed, we all do—and should be valued for that reason.
I know that there are other themes in the Bill that I have not covered—the right to choose where to live, for example—but time marches on.
The Bill contains lessons for us all. Some are achievable by administrative means if the will is there. It is the job of parliamentarians, Government, Opposition and Back-Benchers to keep plugging away to see that it does. Others do indeed need the law to be strengthened. I am afraid that this Bill contains both and I await with eagerness the Minister’s identification of which is which.
My Lords, I warmly welcome the opportunity that the Bill provides for a debate on disabled people and independent living. I pay tribute to my tenacious noble friend Lord Ashley for bringing the Bill before your Lordships today. His efforts over the years to further the interests of disabled people have, as many noble Lords have said, been absolutely tireless. He has been, and continues to be, a real catalyst for change. I also pay tribute tothe Disability Rights Commission, an excellent organisation, which I know has provided considerable support in the drafting of the Bill.
I congratulate the noble Baroness, Lady Verma, on her excellent maiden speech and I am delighted that she chose to intervene in this debate. Her commitment to social justice is clear and we all look forward to her future contributions.
I must also mention that my noble friend Lord Morris of Manchester, who has such a fine record on this issue, very much wanted to participate in the debate but could not be in his place today.
I am glad to be able to say that the Government are fully supportive of the principles underpinningthe Bill, which are entirely consistent with the Government’s position and what we wish to achieve in the future to improve the lives of disabled people. But it would be wrong to forget what has already been achieved. I believe that our performance in extending rights and opportunities for disabled people and ensuring that they are able to live more independent lives is unparalleled. The noble Baroness, Lady Masham, is absolutely right, of course, when she says that we are only part way along the journey. Huge changes still need to be made to transform the lives of disabled people and the demographic challenges mentioned by many noble Lords are enormous.
The debate has highlighted many practical problems—for example, in relation to wheelchairs—issues which have to be addressed as a matter of urgency. I am glad to say that on 22 June the Prime Minister announced that the Department of Health will undertake a radical review of community equipment and wheelchair services—the transforming community equipment services project which will help to make independence a reality. The aim of the project will be to achieve a streamlined, more responsive and realistic assessment of individual needs across health and social care and explore how to harness the capabilities of both the third and private sectors across the end-to-end delivery of these services. The Government aim to have developed a new model for the provision of community equipment and wheelchair services across England which will be capable of being implemented by autumn 2007.
Today’s debate is particularly timely as it coincides with the publication yesterday of the inaugural annual progress report to the Prime Minister from the Office for Disability Issues. As many of your Lordships have mentioned, in 2004 the Prime Minister asked his strategy unit to look at what more could be done to help bring about equality for disabled people. In January 2005 the unit published its report Improving the Life Chances of Disabled People. The report sets out a clear vision for Government that by 2005 disabled people should have the same opportunities and the same choices as everyone else. It contains 60 recommendations dealing with issues from the early years, the transition to adulthood, employment and, of course, independent living to help realise that vision.
The overall strategy is being driven by the new Office for Disability Issues, or ODI, which was established in December 2005. We are now just over 18 months into a 20-year strategy which provides the kind of joined-up coherent approach that has been rightly demanded today. The progress report published yesterday by the ODI provides an honest assessment of the situation and enables everyone to judge whether we are achieving our aims. The report makes specific reference to transition, mentioned by the noble Lord, Lord Clement-Jones. It refers to the responsibility of directors of adult social services for managing the transition process and ensuring that there is a clear line of accountability for improving outcomes and monitoring the quality of the transition.
While the Government have overseen the largest extension of disability rights in history, they are rightly committed to delivering greater change to enable disabled people to make real choices. For example, the ODI is bringing the voices of disabled people into the heart of government. This very week, we announced that we would be establishing Equality 2025, the UK Advisory Network on Disability Equality. It will work with Ministers and departments to ensure that disabled people’s perspectives are built into policy-making from the start. The ODI is also successfully bringing departments together to improve services for disabled people. I understand the frustration rightly expressed about the lack of co-operation on the ground between local authorities, NHS bodies and key partners, but co-operation between departments is a step forward and it is already bearing fruit. We are starting to break down the Chinese walls referred to by the noble Lord, Lord Addington. Indeed, the report looks at that very issue.
A further reason why the Bill is well timed is that I am able to announce today that we have set up a cross-government independent living review to drive forward this complex agenda. It will be led by Jenny Morris, an independent living expert, working with a team in the Office for Disability Issues, steered and shaped by an independent living expert panel, chaired by Dame Jane Campbell, whose record in this area is well known. I am enormously pleased that these two eminent experts have agreed to work closely with the Government on this project.
We see the review as a strengthening of our commitment to disabled people—bringing into the heart of the ODI the views, thinking and experience of independent living experts, while building on the mechanisms that the office already has in place to carry forward the detailed work between and within government departments. This will, I hope, help to bridge the gap between rhetoric and reality mentioned by my noble friend Lady Wilkins. It will also enable people better to battle against bureaucracy.
Many other initiatives introduced by the Government have had and will have a hugely positive effect on the ability of disabled people to live independent lives—for example, the Disability Discrimination Act 2005. The Government believe that a comprehensive framework of civil rights is a necessary foundation for achieving equality for disabled people. Following the Government’s action, the framework is finally in place. The Disability Discrimination Act 2005 followed the landmark extension of the DDA from 1 October the previous year. The changes we introduced from that date extended the employment provisions of the DDA to more than 1 million additional small businesses and a further 7 million jobs, and brought the final access duties into force.
So now, at last, the DDA is driving the cultural change in society that we all want. Access ramps, communication aids and toilets for disabled people are at last becoming the norm, not the exception—well, I hope they are. We do not underestimate the scale of the challenge that remains in embedding these duties, particularly for small businesses which sometimes assume that improving access means a complete refit of their premises.
As your Lordships will know, the new Act extended protection from last December to a further 250,000 people, by covering people with HIV, multiple sclerosis and cancer from the point of diagnosis. People with mental health conditions will find it easier to use the protection of the DDA. Disabled people will progressively have new rights when, for example, sitting exams, using transport services, renting property and joining or using private members’ clubs.
The new Act also introduced a disability equality duty, which will come into force from this December. From that date, it will no longer be lawful for public bodies to design services or carry out functions without first considering how disabled people are affected.
It is also appropriate to touch on our proposals for welfare reform. I am grateful for the support expressed by the noble Lord, Lord Skelmersdale. There has been much speculation and, at times, misinformation in the media about our intentions, but I hope we have been absolutely clear that, far from seeking to get tough with people on incapacity benefits, our starting point is that disabled people want to have the right to work, and would do so if the right opportunities and support were in place. Employment brings dignity and opportunity to end isolation, as well as wages. We estimate that around 90 per cent of the 2.7 million people claiming an incapacity benefit would meet the core definition of disability in the Disability Discrimination Act. These figures perhaps help to demonstrate why the employment rate of this group is less than 50 per cent at a time when we are seeing record numbers of people in work.
I note the concerns expressed by the noble Baroness, Lady Darcy de Knayth, about earned income disregard for independent living. It is rathera detailed issue to consider in a short debate, so I undertake to write to the noble Baroness and I shall place a copy of the letter in the Library.
On adult social care and the progress that we have made in developing the concept of individual budgets, the Government are currently undertaking a number of pilot projects on providing individual budgets for older and disabled people. I therefore welcome my noble friend’s focus on individual budgets as a key element in delivering improved choice and control for disabled people. However, it is important to remember that individual budgets are still being piloted at this stage. We have commissioned a comprehensive evaluation of the pilots. This will identify whether they can be delivered within our existing resources and whether they are delivering benefits to the people who use them. The evaluation will also look at whether there is a particular model or models of individual budgets that work best for people with different needs. We are not expecting to have final evidence from the pilots until spring 2008. We do not believe therefore that it would be sensible to introduce a statutory requirement for the introduction of the individual budgets approach until we have seen the results coming from the pilot projects, and have had time to consider all the evidence.
I am told that I said earlier that the strategy unit’s report set out a clear vision for government to be achieved by 2005; clearly I meant 2025. Forgive me—I, too, want to push forward with the progress.
The noble Baroness, Lady Darcy de Knayth, rightly emphasised the crucial role of carers, including very young carers, the pressures that they are under and society’s dependence on them. Over the past nine years we have consistently sought to improve carers’ lives and well-being, but I understand that the burdens are still enormous. We supported legislation giving carers the right to a holistic carer's assessment, including the carer’s wishes with regard to paid work, education and leisure activities. We introduced the carers grant to help councils support carers with respite breaks and other services—though possibly not enough. By 2008, we will have invested more than £1 billion in support for carers. But we want to do more, or course. In the White Paper, Our health, our care, our say, we proposed a new deal for carers to improve support for them through a range of measures, including the establishment of a helpline to offer advice; the provision of short-term, home-based respite support for carers in crisis or emergency situations; and the creation of an expert carers programme to provide training for the skills carers need to control their own health and the health of those in their care.
Many noble Lords referred to the Bill’s proposals relating to housing and accommodation for disabled people. The Government fully recognise that it is extremely important that disabled people who have access needs are housed appropriately and that they have the right level of priority for housing. That is precisely why we have amended the legislation governing the way in which housing authorities allocate social housing. This now makes clear that in giving “reasonable preference” for an allocation to people who have medical and welfare grounds for moving house, authorities must include people who need to move on grounds relating to a disability.
The changes we introduced in the Housing Act 2004 were intended to meet the sort of concerns the noble Lord’s Bill has identified. The term “medical grounds” was being interpreted too narrowly by some local authorities, and disabled people were being disadvantaged as a result. The Government also want to see social landlords make the best use of housing stock, including accommodation which is accessible or has been adapted for use by disabled people. We recognise that accessible housing registers can be useful and the current statutory guidance to local authorities on the allocation of accommodation encourages their use. However, we do not believe that forcing authorities to compile registers is the right way forward. We believe that it would be burdensome and could be counter-productive. Rather, we believe that it should be for local authorities to decide whether a register would meet their local needs and, if so, to set it up in a way which best suits those needs.
The noble Baroness, Lady Greengross, referred to decisions by the courts that have limited the scope of the Human Rights Act over residential care. The Government are disappointed that the narrow interpretation taken by the Court of Appeal of the meaning of “public authority” is limiting the protection that we intended to put in place withthe Human Rights Act. Following the JCHR's recommendations in 2004, we have already taken effective measures to mitigate the problem by issuing guidance to local authorities on contracting for services and by setting up a system to identify a suitable case in which the Government can intervene to argue for a wider interpretation of public authority.
Perhaps I may now move briefly to what the Government are doing to assist independent living for people with learning disabilities. In March 2001, the Government set out their plan for improving the lives of people with learning disabilities, their families and carers in the White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century. This, the first White Paper on learning disability for 30 years, was based on the principles of rights, inclusion, choice and independence. It was written in consultation with people with learning disabilities, their families, carers, and the organisations that represent them. It set out a cross-government approach to addressing the lifelong needs of people with learning disabilities across health, housing, education, employment, social services, transport and leisure.
To drive delivery of the White Paper, we created the role of national director of learning disabilities, and in May 2006 we took a step further and appointed a co-national director with a learning disability to work alongside the existing director. The appointment of a learning disabled person to this senior post will play a significant role in leading this cross-government agenda, and it demonstrates our commitment to inclusion, choice and control for people with learning disabilities.
Our policy is to promote inclusion and participation in community life for people with learning disabilities. They should be able to participate in the activities other people take for granted such as getting a job, travelling, raising a family or going out with friends. The national director’s 2005 progress report, “The Story So Far”, showed that change is happening—people arebeing listened to more and supported to live independently—but not enough.
As I am sure noble Lords will agree, user-led organisations play a vital role in supporting disabled people. A strong support network is essential, and that is often best provided by bodies which are led by the very people they wish to support. As the noble Baroness, Lady Darcy de Knayth, remindedus, the Government have already accepted the recommendations, in “Improving the Life Chances of Disabled People”, that by 2010 each local authority should have a user-led organisation modelled on existing centres for independent living. To this end we have established a project as part of the independent living review to identify what needs to be done to make a reality of the recommendation. We are of course aware of the difficulties with funding and local procurement processes and we must find a way through.
This wide range of initiatives demonstrates the Government’s real commitment to improving the ability of disabled people to live as independently as possible. But have we done enough? No, of course not. Barriers and poverty of aspiration are a reality for far too many disabled people. There is still too much to do, but inevitably it will take time.
This morning I was reminded that cultural change is a lengthy process when, with colleagues, I laid flowers at the memorial to Emmeline Pankhurst, who was born 148 years ago on 14 July. It is precisely because we want to ensure further progress for disabled people that we have set out a 20-year strategy. But I believe that the Government can be proud of what has been achieved to date. In many ways my noble friend’s Bill demonstrates just how far we have come in our thinking on making provision for disabled people and in changing the culture and attitudes of society. I am glad to say, as the noble Lord, Lord Addington, said, that this is no longer a party issue; there is cross-party agreement.
I have to say that there are aspects of the Bill with which we might disagree, or which we believe are already achieved or can be achieved through existing provisions.
In addition, there would, as my noble friend acknowledged, be cost implications in implementing all that is proposed, especially at the pace implied in the Bill. However, I recognise that some of those would be offset by cost savings.
But debate on the detailed clauses of the Bill is for a later stage. At this point I am very happy to welcome the principles underpinning the Bill, and again to warmly congratulate my noble friend on bringing it forward and enabling us to debate this important issue. It has allowed us to identify and discuss some of the main challenges that we must meet in the coming years if disabled people are to become equal partners in our society, as they must, with the same opportunities and choices as everyone else, participating as equals in every aspect of family and community life.
This issue is close to the Government’s heart, and we have made real achievements. However, we are only part way through the journey and today’s debate provides us with a further impetus for progress so that all members of our society are, to quote R H Tawney, enabled to make the most of such powers as they possess.
My Lords, I wish to respond briefly to the debate. As so many issues were raised in such detail it is impossible to reply to them all.
I congratulate the noble Baroness, Lady Verma, on her maiden speech, which we were all delighted to hear, and welcome her general support for the Bill. I assure her that the Bill makes provision for carers. Perhaps we can discuss that at a later stage.
The noble Lord, Lord Clement-Jones, mentioned individual budgets, which are an option in the Bill. There is no compulsion in that regard. However, I hope that people will want them and that there will be a big demand for them. They comprise an important part of the Bill, but, as I say, there is no compulsion whatever on anyone to have one.
The noble Baroness, Lady Masham, referred to a different definition in the Bill. We have discussed that at length but perhaps we can discuss it further as the Bill progresses. I cannot respond to that point now.
The noble Lord, Lord Addington, is right to say that disability is now a non-party issue. It used to be years ago, but, happily, as the noble Lord, Lord Skelmersdale, indicated, there is now general amity on the principles. There may be some differences, but I see no mountain of opposition to the Bill. Rather, I see a warm welcome for it and I am sure that the Government have taken note of that. Like the noble Lord, Lord Skelmersdale, I believe that we have made great progress and that there are no substantive differences between us. The same goes for the Liberal Democrats.
The noble Baroness, Lady Royall, was extremely positive and welcoming, which I appreciate very much indeed. Speaking for the Government, she outlined all that has been done in recent years. As someone who has played a small role in those developments, I can say that we warmly appreciate what the Government have done. On the other hand, we would like, and keep pressing for, a specific assurance that the Government support the Bill. The noble Baroness, Lady Royall, could not give that assurance this afternoon, but it is something for us to aim at. We want the Government to say, “Yes, we endorse the Bill”. The announcement by the noble Baroness of a general review of independent living is a major step forward. The two people whom she mentioned in that regard, Jenny Morris and Jane Campbell, are marvellous. Two better people could not have been chosen to do that job. So, it will be a genuine review, for which I thank the Government.
My noble friend the Minister was right to delineate all these developments, and they are considerable. This Bill has been called the holy grail of disability, which is a very demanding title. Some of the elements in the Bill may be burdensome, as my noble friend said. That is the objective—for it to be burdensome, if necessary, to help disabled people. We accept that it will be burdensome. It is up to local authorities and National Health Service bodies to adapt to the Bill as best they can.
I thank everyone who has spoken for their brilliant and rewarding speeches. I believe that we are on our way.
On Question, Bill read a second time.