JCHR Independent Living report - Message from Baroness Campbell

Message from Baroness Jane CampbellI’m really disappointed not to be with you all this afternoon.I am but a stone’s throw away in St Thomas’s hospital – we canprobably wave at one another if you’re so inclined.If the Ward Sister would have allowed it I would have relocated theseminar to the hospital, but unfortunately she is one of the very few Icannot persuade. I have met my match and I’m doing what I’m told,which is such a surprise to everyone including me!I am though relieved and delighted that Baroness Thompson has kindlystood in for me, she I know, feels as passionate about this inquiry reportas I do. You are in very capable if not Olympian hands.I’d also like to thank Hywel Frances for his chairmanship of theCommittee 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 won’t 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 lifeusing direct payments to pay personal assistants, one of whom was hisown step-mother. He has a qualification in graphic design and wasabout 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 windowof opportunity for disabled people to contribute which includes paidwork.Last August he was admitted to the Lane Fox specialist respiratory unitat St Thomas’s hospital where an emergency tracheostomy wasperformed.This is a significant procedure, requiring recovery and adaptation, butRikesh was considered well enough to return home at the end ofSeptember to continue with his life. This was around the time we metwhen I was admitted with a chest infection. Despite what he had beenthrough, he was bright and optimistic about his future. And I had no

doubts he would adjust and would be the opportunity to work in theOlympic project was still possible.When I was re-admitted to hospital in January, I was shocked to findRikesh still there. Had his health declined?No. He remained in hospital because the tracheostomy saw what hadbeen defined as ‘social needs’ for support become ‘health needs’ and asa consequence he was no longer allowed to arrange his own personalassistance. Instead, responsibility regarding his support passed fromsocial 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 andthey backed down.Rickesh ideally wanted to continue employing the personal assistants hehad before going into hospital, but the PCT would not allow this onhealth and safety grounds. They insisted on retaining control over theemployment of his personal assistants. It has taken until the last fewweeks for them to have arranged this and they are now training the staff– training which the hospital could have given to his existing personalassistants, who he has now lost.He is still in the Lane Fox Unit. He has been there day after day, nightafter night in a hospital ward for over 6 months. An intensive care wardwhere people frequently die and the noise of machinery making sleeponly for the very tired or very ill possible. He does not even have thesupport 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 isclear to me his confidence and mental health is now very fragile. A lifebarely lived for days, weeks and months on end. He hopes to leavesometime in April. I fear for him as my experience, knowledge and thisinquiry tells me something different. I can only hope that I’m wrong.Britain may no longer routinely place disabled people in institutions, butthat does not mean that it does not institutionalise disabled peoplethrough bureaucratic failure, red-tape and a lack of support.The needless human cost is obvious. The needless financial cost to thetaxpayer 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 inthe context of the reforms and spending cuts presently being

implemented. The UN Convention makes clear that countries shouldprogressively realise disabled people’s human rights within themaximum of their available resources. We are clearly failing to do so ifwe allow almost a £1/4 million to be wasted in such a way. For thosewho say independent living is an unaffordable ideal, I say that havingcontrol over our own lives is a way to cut through such waste.Independent living isn’t just about disabled people’s human rights – italso make sound economic sense as the basis to re-organise our publicservices and supports.Since leaving university I have had the privilege of being involved inhelping develop the complex weave of legislation and public policynecessary 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 spendingdecisions we are presently faced with, I worry that our achievementsmay be built on sand.If my local authority cuts my care package or demands that -like Rikesh-I transfer to NHS care (because they regard using a ventilator as thetrigger for health services), I lose control of my life. I might have to leaveparliament, or give up work altogether. Yet at present I am only a fewbureaucratic decisions away from returning to the inequality I endured atage 18. It wouldnt take long to transform all my relationships with mycolleagues, partner, family, friends into one which gives little or nothingto anyone. Everyone loses.The fact that all this could happen without my consent hangs over meand thousands of others. It is powerlessness in the face of bureaucracy.This is why our inquiry report could not be more timely. Especially, ashuman rights is such a topic of discussion these days. For it well helpremind us that dignity, autonomy and participation are all values andprinciples that will realise the ambitions of this report and Rikesh’sfuture.We cannot achieve rights to independent living if the support we requireand our opportunity to assume control over it remain entirely at thediscretion of national and local government. The UN Convention on theRights of Persons with Disabilities makes clear that government has aduty to ensure that disabled people enjoy this right.I hope this report gives all of you in the room and beyond a powerful toolto work with all the change agents that can make or break disabled

people’s right to independent living. With your help, Rikesh and manyothers like him can look forward to a future that I have enjoyed.That’s why I want to dedicate this report to Rikesh. I think we would allagree that he should not only enjoy his basic human rights, but thatthrough doing so he should be able to realise his dreams.

JCHR Independent Living report - Message from Baroness Campbell

by Rich Watts

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