Anna McNaughton fell in love with the West Sussex seaside town of Worthing when she moved there two years ago. It’s a stone’s throw from Brighton, around an hour by train from London, and its bars, cafes and restaurants are edged by a tree-lined promenade. Having had a room in a shared house since moving, the 23-year-old wants her own space.
The fact that McNaughton has no recognisable speech and is a profoundly physically disabled wheelchair-user doesn’t stop her feeling passionately about her home town. She likes the pedestrianised streets, has local friends and wants to lay down roots. Earlier this year, she found an accessible housing association bungalow that she could part-rent and part-buy under a scheme allowing those with long-term disabilities to secure a specialist mortgage. She began planning her move.
But McNaughton is not moving anywhere. A bureaucratic wrangle over something called ordinary residence has trapped her in residential care, despite the fact that she not only desires but is capable of living more independently.
Defining someone’s ordinary residence is the mechanism that councils and primary care trusts (PCTs) use to decide who should fund an individual’s care. Ordinary residence guidance – and it is guidance, rather than an obligation – is part of the 1948 National Assistance Act. If a council places someone in residential care outside the local authority area, it remains financially responsible. Should the person subsequently move out of care and into supported accommodation in the community, responsibility shifts to the council in which they are based.
But authorities often balk at funding someone not originally from the area, while the councils that originally placed them in out-of-area residential care argue that they are not responsible for funding if the person moves.
This is what happened to McNaughton. East Sussex county council funds her care at a Leonard Cheshire Disability residential home in Worthing – it funded her previous residential care at Treloars college in Hampshire – but if she moves out of the home and into supported housing, her care becomes the financial responsibility of West Sussex county council. Because the latter has refused to fund her, she is in limbo.
McNaughton, whose quadriplegic athetoid cerebral palsy means she can only communicate via a computer attached to her wheelchair and operated by a forehead sensor, is devastated. She wants more independence. She explains: “If I could move into my own place I’d feel more independent to make more decisions about what’s best for me. I’d feel really proud of myself.”
McNaughton’s mother adds: “Anna’s trapped in residential care and is very angry and frustrated. Whatever happened to choice when it comes to the disabled?”
There are 500 people with physical or learning disabilities caught in such disputes every year, according to the Voluntary Organisations Disability Group (VODG), an umbrella group of third sector providers of social care for adults with disabilities. Its forthcoming report , Not in My Back Yard, argues that some councils and PCTs use ordinary residence disputes to delay or avoid paying for care.
As around 20,000 adults in England live in care homes outside their local area, these disputes could mushroom if more disabled people were to move into independent accommodation.
The wrangling can become extremely protracted. If neither council budges, the case is referred to the health secretary, Andrew Lansley. Either council can then challenge his decision in the high court.
Disputes over ordinary residence can also affect those who wish to move from residential care in one area to residential care in another. Harriet Kissick-Jones, a 21-year-old with moderate learning difficulties, from a village near Saxmundham in Suffolk, had funding from Suffolk county council for her place at a residential college for people with learning disabilities in Wadhurst, East Sussex, run by the Camphill community. After college, she wanted to move to the familiar residential environment of an adult Camphill community in Gloucestershire.
The family began planning the move last year and Kissick-Jones secured a place several months ago. Her family had no reason to doubt that her funding would continue, but weeks before she was due to start, it emerged that neither Suffolk nor Gloucestershire would fund her.
Her father, Max Kissick-Jones, says he spent an hour on the telephone every day trying to resolve the situation. Eventually, Suffolk agreed to fund her for three months before Gloucestershire takes over. “Harriet’s story looks like it has a happy ending,” says her father, “but there are many cases where families cannot speak up and bring pressure to bear on agencies.”
That’s what happened to Tim Brown (not his real name), a learning disabled resident with complex needs. His place at a home in southern England had been paid for by the PCT where he grew up, but his needs changed and the trust decided he was no longer eligible for funding. His original council refused to fund him. Brown, supported by learning disability charity the Brandon Trust, applied to the local council but it is also disputing responsibility.
“If we believe that in this country people with learning disabilities and complex needs who require support have the right to live in a particular area of their choice, then flexibility on the administration of their statutory funding is essential,” says Jon Minall, director of operations at the Brandon Trust.
Campaigners say the situation disadvantages those who are already vulnerable, makes a mockery of the Equality Act that promotes fair treatment for all, and undermines the government’s commitment to expand personal budgets, which give people using social care services more control of their money.
It doesn’t help that council funding for care services is under threat. The Supporting People programme, which encourages disadvantaged people to lead independent lives, is no longer protected by a ringfenced budget and is likely to suffer in next week’s comprehensive spending review. The Independent Living Fund (ILF), which allows severely disabled people to buy care and support, is closed to new applications.
According to this year’s survey of local authorities by the Learning Disability Coalition, 53% of councils said that supported living services were likely to be affected by budget constraints. As councils face imminent cuts, there will be many more cases like McNaughton’s.
West Sussex county council refuses to comment on individual cases but a spokeswoman says: “The options for assisting people to live independently wherever they want to has been further impeded by the restriction of the Independent Living Fund.”
The Guardian UK