Wednesday, October 27, 1999 Published at 13:18 GMT 14:18 UK
Disabled hopes dashed over community care
Disabled people are being offered more choice
Severely disabled people have had their expectations raised over community care, only to find council cuts mean they do not get the services they need, says a report.
Developments, such as schemes for allowing disabled people to buy their own care, have widened their options, but there are growing tensions between raised expectations and council cuts, says the report for the Joseph Rowntree Foundation.
It looks specifically at Independent Living Funds (ILFs) and their successors which were set up to allow people on means-tested benefits to buy their own personal and domestic care.
The government-funded ILFs provide top-up funds for social services packages costing over a certain amount each week.
Some 15,000 people in the UK are estimated to be receiving the payments.
The report, What price independence? Independent living and people with high support needs, found that different social services departments had totally divergent approaches to funding community care for the severely disabled.
"Budget constraints have a powerful impact on these decisions," says the report, written by Ann Kestenbaum.
She says cuts have increased waiting lists for services, led to the number of services on offer being reduced and brought about the setting of ceilings for spending on community care packages.
She adds that, at the same time, ILF levels have not changed since 1993, although costs have gone up.
People aged over 65 have particularly suffered as many social services departments impose spending ceilings more rigidly for them.
Also, new applicants for ILFs only apply to people aged between 16 and 66. The government has, however, announced plans to address this.
The report says bureaucracy is also a factor in widespread differences in the type of services on offer, preventing health and social services working together effectively.
It points to continuing problems between health and social services over funding for community care.
This is partly because NHS care is provided free of charge, unlike social services care.
One social services manager quoted in the report said: "The continuing care criteria were written by the health authority and are so tight that hardly anyone who isn't in a nursing home or dying can get help."
The report also found that some people who could live in the community were still being put into residential care against their will because of a failure of health and social services to agree funding for care packages.
It said some care packages were extremely complicated because social services were trying to juggle different funding agencies' policies.
Clients complained this often left them with little say in the care they received.
One disabled person said: "It's rather like I'm institutionalised in my own home. That's how I feel.
"It's times for this, times for that, certain times to get up, certain times to go to bed, whether you want to or not. I can't have any say about the times the nurses come...What I miss is quality time."
The report argues that reworking traditional care packages and allowing disabled people a greater say could make them less complex and could save money.