Two disabled people will challenge the government in court this month over its refusal to allow them to use direct payments to manage their own long-term healthcare.
They will argue that the decision discriminates against them and breaches their human rights.
The Government is fighting the case despite passing new legislation in November that will allow the NHS to use direct payments. It is now preparing to pilot their use in some primary care trusts (PCTs).
Steven Harrison (Harry), a 41 year old former soldier from Wakefield, who is represented by Switalskis, broke his neck whilst in the USA on 4 July 1998, when he dived from a boat that had drifted into shallow water. Until July 2005, he was provided with Direct Payments by his Local Authority Social Services Department, allowing him to select and pay his own carers.
Harry is susceptible to a life-threatening condition called Autonomic Dysreflexia (AD), which means failure to deal quickly with irritating and stressful stimuli (such as a full bowel or bladder) can be fatal within 20 minutes.
Harry finds the delivery of personal care extremely intrusive and to retain his dignity, it is vital to him he has carers he trusts and is comfortable with. Harry says the better his carers know him, the more able they are to anticipate and respond to his needs, including when he suffers an episode of AD. If he does have carers he knows and trusts, Harry is able to live a relatively full life, attending University, going on holiday and having a social life.
When Harry's care needs were reassessed, so that his night time care was considered a health care need and had to be delivered by the NHS rather than the Local Authority, he was no longer able to receive direct payments and to choose his own carers.
Valerie Garnham, who has a progressive neuromuscular condition, was one of the first residents of Islington in London to receive direct payments for care services, but a serious illness seven years ago meant she needed a permanent tracheotomy and ventilator.
She became eligible for NHS continuing care and began receiving direct payments for her health needs from Islington PCT, paid through her council. But two years ago, the PCT told her she would have to receive her healthcare through an agency, because of new government guidance.
Garnham lost a court battle to challenge this decision last year, but won an interim injunction forcing the PCT to allow her to continue receiving direct payments until her appeal was over.
Now lawyers for Valerie Garnham and Steven Harrison will argue their case at the court of appeal.
They will say the Department of Health (DH) has the power to allow direct payments to be paid to service-users, and by denying them to those receiving healthcare services, it is discriminating against disabled people and breaching their right to a private and family life, under the European Convention on Human Rights.
Garnham said it could cost three times as much to provide agency nurses than her current arrangement, her quality of life would suffer, and she would feel less secure than she does with the trusted staff she has helped train herself.
She said: "It would remove my control. It would be impossible to match the flexibility that we have at the moment."
Her solicitor, Frances Lipman, from the Disability Law Service, said: "This is a very important case. What is the difference between someone on NHS and someone on social care? It goes to the heart of disabled people’s lives and how they manage their care."
Lindsey Rhodes, from Switalskis Solicitors, who represents Harry, said: "At the heart of this case is the right of a disabled person to be supported to live independently. We argue that Harry and the many other disabled people seeking to live a full life in their own home are entitled to choose their own carers.
This is such an important issue that we seek an order from the Court that Harry and others in receipt of continuing care at home can have direct payments without delay.
We do not think this is a matter that can be put off whilst the Department of Health seek a change in legislation and introduce pilots schemes on a gradual basis. That pace of change is too little too late for people whose quality of life and right to live independently is compromised now."
The hearing commences on 19th January. The DH said it could not comment because of the pending appeal.
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