Thanks mainly to the closure of long-stay hospitals, we are seeing the first generation of people with learning disabilities grow old in the community.
At least that was the idea. But as cash constraints start to bite it seems increasing numbers of people with learning disabilities could find their hard-fought independence snatched from their grasp.
In some parts of the country those who hit the age of 65 are switched from learning disability services to the older people’s service. The staff are well intentioned but they can lack the specialist knowledge to support this group and, even more importantly, they have a lot less to spend on care packages (sometimes just a third of what is available to learning disability teams).
Anecdotal evidence from advocacy organisations suggests that previously active people with learning disabilities in their 60s (and sometimes younger) are finding themselves moved into care homes alongside people much older and less able than them. Their daily supported activities like shopping trips and visits to a day centre are replaced by an annual coach outing and they find themselves exchanging a well-supported life for a restricted existence.
This problem is likely to get worse with rising numbers of older people with learning disabilities putting increasing pressure on services. The fact is, despite the inadequate health care service they receive, they are still living longer. More are also surviving as babies thanks to medical advances. And, of course, the overall increase in the number of older people also pushes up the numbers of older people with learning disabilities. The upshot is that services are going to be facing a crunch point very soon – if they have not reached it already.
Eric Emerson, professor of disability and health research at Lancaster University, has predicted a 28% increase in the number of people with learning disabilities known to services between 2001 and 2011 (and a 48% rise by 2021).
For Keith Smith, chief executive of the British Institute of Learning Disabilities, this raises huge challenges that are not being addressed.
“The figures are there but the authorities have not responded and they are not doing their forward planning. A key issue is who is going to support this group – learning disability services or older people’s services? It is not right that people reaching 65 are having to face the disruption of a move, not because it suits their needs but because it suits the system.”
Alison Giraud-Saunders, co-director of the Foundation for People with Learning Disabilities, is concerned about people with learning disabilities who have not previously been in contact with services.
“Years ago people who had a baby with learning disabilities were told their child would never amount to anything and the best thing to do was put them into an institution. Some literally fled with their children and were never heard of again. But now these families are starting to come to the notice of the authorities as the elderly parents become ill or die leaving offspring, often approaching retirement age, who cope for a while then find things start to fall apart.”
Carol Herrity, Mencap campaigns manager, adds: “Many face a double whammy – overlooked by learning disability services and then overlooked by older people’s services. They end up ignored twice.”
There is also an issue of fairness. There is no denying services for older people are under-resourced so why should an older person with learning disabilities get a better deal and more support? Some might answer because they have an even greater need, but cash-strapped local authorities are likely to be drawn to the cheaper option.
Next month we expect to see the refreshed Valuing People report and, shortly after that, the comprehensive spending review. Both urgently need to address this issue. If they do not, more people with learning disabilities could end up back in an institution and all the gains of the last decade towards more independent living could be lost.
Decision at odds with government’s aim
Orbit Housing Association’s Care and Repair, Coventry
Orbit Housing Association in Coventry runs one such scheme which is helping 74-year-old Janice Walters. She has arthritis and learning disabilities and is a carer for two of her three daughters, Jackie, 47, and Janine, 45.
Jackie has needed 24-hour care since contracting meningitis at four months of age (she has mobility problems, is incontinent and cannot speak) while Janine has learning disabilities. Both have care packages from social services though this wasn’t the case for their mother until recently.
Janice began to struggle some years ago after the death of her mother who had helped out with the children. Matters came to a head when neighbours complained that the house was a health hazard.
Environmental services found that the downstairs toilet, which was outside, had become blocked while inside the house the floorboards had been rotted by urine.
The local authority referred the case to Care and Repair who applied for a disabled facilities grant to put in a downstairs bathroom and bedroom for Jackie.
The crisis worker, Julie Haddon, describes what happened next. “When we went in the conditions in the house were pretty terrible. We got the floorboards replaced and we used some charity money to get them some new furniture.
“Janice clearly needed more support. We thought she should qualify for a direct payment but we were told because she has a learning disability administering it is a problem.
“She was also in serious debt. She owed £1,400 to an insurance company and was paying 177% interest. Then we found she owed over £6,000 to a catalogue which, thanks to the interest, rose to £6,900. She was paying £360 a month to her creditors so her finances were in a terrible mess.”
Donna Bentley, the case worker, adds: “What Janice has on her plate would be a lot for anyone, let alone someone with learning disabilities. She is meant to get some support in the morning to get Jackie up and out. But then sometimes the carer doesn’t turn up and Janice tells us how she and Janine struggle to get Jackie into the shower, one of them washing her while the other feeds her breakfast in the rush to make sure she doesn’t miss her transport to go to the day centre.
“At night Jackie often clambers out of bed and crawls around which means Janice and Janine have to get up and lift her back into bed.”
Haddon hopes that the Care and Repair team can work with social services to devise a plan for the future: “It’s a very complex case. Janice is a really lovely person and she’s done so well to keep the family together. But she needs some outside interests as a respite from what really is a life of drudgery.
“But it seems round here while there is a lot for young people with learning disabilities, for older people like Janice there’s nothing.”
This article appeared in the 4 October issue under the headline “Older and out”