My Lords, I apologise for not being able to bound in as soon as the noble Lord, Lord Hunt, sat down. At that moment my papers cascaded to the floor. I rise to support Amendment 78D. For logistical and physical reasons, as my noble Lords can probably hear, I was unable to put this amendment down myself and the noble Lord, Lord Hunt, has done miracles to articulate our conversations in such a lucid manner.
I feel, however, that I must give your Lordships a very clear example of why I believe this amendment is so necessary. Why do health and social care practitioners need this further direction in this amendment?
It is true that health and social care consumers enjoy greater personal control now, which affords a small percentage support to live independently in the community. I am an example of the few who live with complex health and social care requirements and live a life just like any other; pursuing a career, tending the family, or in my case revising legislation.
We remain, however, an exception, rather than the rule. Let me give your Lordships a couple of examples. Just over a year ago, I led a JCHR inquiry into Article 13 of the UNCRDP, a right to independent living. When we launched the findings, I dedicated the report to a disabled young man who had secured optimum control over his own life using social care direct payments. He lost everything within a couple of months, after his support needs changed, due to requiring a tracheostomy. He had graduated from university and was about to start his first job .
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The tracheotomy is a significant procedure requiring recovery and adaptation, but he was considered well enough to return home after two months to pick up his life. Despite what he had been through, he was bright and optimistic about his future, and I had no doubts that he would adjust and go back to work.
Five months later, he was still on the same high dependency ward. Had his health declined? No. He remained in hospital because his tracheostomy meant he was no longer allowed to manage his social care direct payments. Without his knowledge, he was passed from social services to his local PCT, which suggested he move to a nursing home for older people. When he and his consultant said no, this file was put in the pending tray. There this young 23 year-old watched patients die, and the noise of machinery made sleep possible only for the very tired or the very ill. It was a life barely lived for days, weeks and months on end.
That situation occurred only due to the inability of local health and social care services to work in an integrated, efficient and effective way. It could not have been a question of funding, as the cost of his care
was three times more expensive in the hospital unit. This was not an isolated case. Since then, the unit has experienced an increasing number of cases.
Britain no longer routinely places 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, precisely because the duty struggles to provide a holistic publicly funded health and social care support service.
I am not a fan of a health model of disability, but so many disabled people are living with considerable health issues. That is why we have to have a clear structure and direction in both health and social care so that they work together equally to produce outcomes for disabled people that enable them to go on living the life that they so long for: a life lived independently in the community.