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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
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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.
3.05 pm
Baroness Masham of Ilton: 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,
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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
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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
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3.17 pm
Baroness Wilkins: 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.
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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
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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?
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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.
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3.32 pm
Baroness Darcy de Knayth: 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.
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