A disabled peer has dedicated a ground-breaking parliamentary report on independent living to a young man who has been prevented from leaving hospital for more than six months by “bureaucratic failure” and a lack of support.
Baroness [Jane] Campbell said his case illustrated her fear that disabled people’s hard-won rights to independent living “may be built on sand”, and showed why the inquiry report published by the joint committee on human rights was so “timely”.
A parliamentary seminar on the report heard that she had met the young disabled man – who she said was called Rikesh – while receiving treatment herself for a serious chest infection last September.
He had been due to return home, but Baroness Campbell was amazed to find him still in the specialist respiratory unit of St Thomas’ Hospital when she was readmitted two months ago.
Because he had undergone a tracheostomy, it was decided that his support needs – which had previously been met through direct payments and personal assistants funded by his council – had now become health needs.
Responsibility for his support passed from social services to his primary care trust, which insisted on taking control of his personal assistants.
Rikesh has now spent six months living in the hospital, at a rising cost of about £225,000 and without even the support he needs to leave the intensive care ward for a coffee or some fresh air.
He hopes to finally return home next month, but even this is not certain.
His ordeal was described in a speech written by Baroness Campbell – but delivered by her fellow disabled peer Baroness [Tanni] Grey-Thompson – at the parliamentary seminar held to discuss the committee’s report on the implementation of disabled people’s right to independent living, which was published earlier this month.
Baroness Campbell played a lead role in the report but has again been readmitted to hospital and so was unable to deliver her speech in person.
She said that Rikesh’s case showed that disabled people were still being institutionalised “through bureaucratic failure, red-tape and a lack of support”.
She said: “Such waste and inefficiency is shocking at any time, but especially so in the context of the reforms and spending cuts presently being implemented [by the government].
“The UN Convention [on the Rights of Persons with Disabilities] makes clear that countries should progressively realise disabled people’s human rights within the maximum of their available resources.
“We are clearly failing to do so if we allow almost a quarter of a million pounds 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.”
Baroness Campbell said she feared that she could end up in a similar situation to Rikesh if her local authority was to cut her care package or demand that she transferred to NHS care, and was “only a few bureaucratic decisions away from returning to the inequality I endured at age 18”.
Diane Mulligan, a member of the Equality and Human Rights Commission’s disability committee, who leads on its work on the UN convention, told the seminar that the inquiry’s report was “fantastic, exemplary and extremely timely” and could influence other countries that have signed up to the convention.
22 March 2012
UN debate will be reminder of true inclusive education