Disabled Persons (Independent Living)Bill [HL]

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 raise 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 provision. 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.