Message from Baroness Jane Campbell Im really disappointed not to be with you all this afternoon.

I am but a stones throw away in St Thomass hospital we can probably wave at one another if youre so inclined. If the Ward Sister would have allowed it I would have relocated the seminar to the hospital, but unfortunately she is one of the very few I cannot persuade. I have met my match and Im doing what Im told, which is such a surprise to everyone including me! I am though relieved and delighted that Baroness Thompson has kindly stood in for me, she I know, feels as passionate about this inquiry report as I do. You are in very capable if not Olympian hands. Id also like to thank Hywel Frances for his chairmanship of the Committee and this inquiry, my fellow committee colleagues, the clerks, the special advisers and critically all of you who submitted evidence, without which there would be no report. You will hear all about the report today, so I wont dwell on the details, but want to say a little about what the report is ultimately about. The photo on your screen is of my friend Rikesh. Rikesh is 21 years of age, with his whole life ahead of him. A disabled young man, he had secured optimum control over his own life using direct payments to pay personal assistants, one of whom was his own step-mother. He has a qualification in graphic design and was about to start his first job working on an Olympic graphic design project. As your Chair today will tell you, the Olympics have opened up a window of opportunity for disabled people to contribute which includes paid work. Last August he was admitted to the Lane Fox specialist respiratory unit at St Thomass hospital where an emergency tracheostomy was performed. This is a significant procedure, requiring recovery and adaptation, but Rikesh was considered well enough to return home at the end of September to continue with his life. This was around the time we met when I was admitted with a chest infection. Despite what he had been through, he was bright and optimistic about his future. And I had no

doubts he would adjust and would be the opportunity to work in the Olympic project was still possible. When I was re-admitted to hospital in January, I was shocked to find Rikesh still there. Had his health declined? No. He remained in hospital because the tracheostomy saw what had been defined as social needs for support become health needs and as a consequence he was no longer allowed to arrange his own personal assistance. Instead, responsibility regarding his support passed from social services to his local PCT. At first they suggested he move to a nursing home for older people. Luckily, his stepmother had the determination to involve solicitors and they backed down. Rickesh ideally wanted to continue employing the personal assistants he had before going into hospital, but the PCT would not allow this on health and safety grounds. They insisted on retaining control over the employment of his personal assistants. It has taken until the last few weeks for them to have arranged this and they are now training the staff training which the hospital could have given to his existing personal assistants, who he has now lost. He is still in the Lane Fox Unit. He has been there day after day, night after night in a hospital ward for over 6 months. An intensive care ward where people frequently die and the noise of machinery making sleep only for the very tired or very ill possible. He does not even have the support he needs to leave the ward for a coffee or a breath of fresh air. He has only survived this due to his resilience and patience, but it is clear to me his confidence and mental health is now very fragile. A life barely lived for days, weeks and months on end. He hopes to leave sometime in April. I fear for him as my experience, knowledge and this inquiry tells me something different. I can only hope that Im wrong. Britain may no longer routinely place disabled people in institutions, but that does not mean that it does not institutionalise disabled people through bureaucratic failure, red-tape and a lack of support. The needless human cost is obvious. The needless financial cost to the taxpayer of Rikesh having to stay in hospital is already in the region of 225,000 and counting. Such waste and inefficiency is shocking at any time, but especially so in the context of the reforms and spending cuts presently being

implemented. The UN Convention makes clear that countries should progressively realise disabled peoples human rights within the maximum of their available resources. We are clearly failing to do so if we allow almost a 1/4 million to be wasted in such a way. For those who say independent living is an unaffordable ideal, I say that having control over our own lives is a way to cut through such waste. Independent living isnt just about disabled peoples human rights it also make sound economic sense as the basis to re-organise our public services and supports. Since leaving university I have had the privilege of being involved in helping develop the complex weave of legislation and public policy necessary for disabled people to live in, and be part of, their community. Countries around the world look to the UK as a model of good practice. Progress for sure, but in the face of the storm of reforms and spending decisions we are presently faced with, I worry that our achievements may be built on sand. If my local authority cuts my care package or demands that -like RikeshI transfer to NHS care (because they regard using a ventilator as the trigger for health services), I lose control of my life. I might have to leave parliament, or give up work altogether. Yet at present I am only a few bureaucratic decisions away from returning to the inequality I endured at age 18. It wouldn't take long to transform all my relationships with my colleagues, partner, family, friends into one which gives little or nothing to anyone. Everyone loses. The fact that all this could happen without my consent hangs over me and thousands of others. It is powerlessness in the face of bureaucracy. This is why our inquiry report could not be more timely. Especially, as human rights is such a topic of discussion these days. For it well help remind us that dignity, autonomy and participation are all values and principles that will realise the ambitions of this report and Rikeshs future. We cannot achieve rights to independent living if the support we require and our opportunity to assume control over it remain entirely at the discretion of national and local government. The UN Convention on the Rights of Persons with Disabilities makes clear that government has a duty to ensure that disabled people enjoy this right. I hope this report gives all of you in the room and beyond a powerful tool to work with all the change agents that can make or break disabled peoples right to independent living. With your help, Rikesh and many others like him can look forward to a future that I have enjoyed.

Thats why I want to dedicate this report to Rikesh. I think we would all agree that he should not only enjoy his basic human rights, but that through doing so he should be able to realise his dreams.