People with learning disabilities ‘wrongly housed with elderly’

Almost 900 people with learning disabilities are living in care homes for the elderly, inappropriately placed to save local councils money, say campaigners.

Research by the Learning Disability Alliance Scotland (LDAS) has identified at least 869 people, the youngest aged 19, who have been placed in such homes. It says the true figure could be more than 1158.

LDAS, which represents more than 20 charities and other organisations, says that once placed, few will ever get out of this accommodation. It accused councils of “benign neglect”.

The figures come from a report, Stuck!, to be published today and are based on estimates from Government statisticians using the Scottish Care Home Census. They have been backed up by freedom of information requests and a survey of 220 elderly care homes registered with the Care Commission.

The report argues that under free personal care policies, most people are delaying going into care homes until their eighties or nineties. Yet people with learning disabilities at 65 are routinely placed in homes for the elderly.

LDAS says at least 300 cases have been identified where people under 65 are in elderly care homes, and claim the age gap can cause significant problems. Where the person with a learning disability is 65 or older, the lack of specific support can often mean the placement is still deeply inappropriate.

Ian Hood, LDAS co-ordinator, said problems include bullying and name calling, a lack of shared interests, people with learning disabilities failing to get help to communicate, and care staff who lack specialist training.

He said: “Increasingly, local authorities see this a cost-cutting measure. Many of these people are facing a system of benign neglect they are relatively powerless to do anything about and, once placed, few ever leave.”

One case identified was that of a 45-year-old woman misdiagnosed with dementia after the death of her mother. She spent six years being treated for dementia because the staff misunderstood her learning disability. Until a social worker realised she did not have the illness, she had been spending time in dementia support groups where she was encouraged to reminisce about wartime experiences, despite the fact that she was born in 1955.

In other homes, the report warns, frailer residents often see the more mobile people with learning disabilities as a danger or find younger people’s musical interests loud and upsetting.

Jim Barton, from Hamilton, was forced to consider a new care home for his daughter Gillian, who has a severe learning disability, as he and his wife are now in their seventies. It seemed as if Gillian, who is 40, might have to be placed in a home with residents twice her age.

Mr Barton said: “I went to see a local residential care home for older people and found it totally unsuitable.

“Fortunately, a place for our daughter in a small, four-bedded, dedicated unit was arranged by the council. The relief for my wife and I was beyond words.”

As the people with learning disabilities tend to be younger and healthier, they can expect to live for many years once placed in a care home, surrounded by people coming to the natural end of their lives.

The report calls on the Scottish Government to provide independent advocacy for every person with a learning disability living in a care home for older people and says the Social Work Inspection Agency should review the practice of placing adults with learning disabilities in care homes for older people.

Mr Hood, added: “Surely everyone will agree that it is fundamentally wrong to put young people in the same home as very old frail people.”

A spokesman for Cosla said: “Councils have worked extremely hard to ensure that appropriate community-based support options are available for people with learning disabilities.

“Social workers certainly don’t ‘stick’ people in care homes to save money.”

Marcia Ramsay, director of adult services at the Care Commission, said: “The choices, rights and needs of the individual should be paramount when deciding where they live.

“On occasion, we have found situations where needs are not being met or people have not been placed appropriately and we have and will continue to take appropriate action.”

A need for more community care

Scotland deserves a pat on the back for the quality of facilities and support for children with learning difficulties, but when those children reach adulthood many parents compare the withdrawal of services to falling off the proverbial cliff.

In days gone by, many of these men and women spent their lives hidden away from the world in grim Victorian institutions, such as Lennox Castle in Lennoxtown. Today, as The Herald reports, many of them end up in residential care homes for the elderly, long before they reach 65.

This was not meant to happen. When the big institutions closed, funds were transferred to local authorities and the health service, so that residents could be cared for in the community. “Care in the community” was the modern enlightened way forward. Decent transition funding helped to smooth the change. The government’s Independent Living Fund (ILF) pumped millions into enabling people with learning difficulties live in supported accommodation. Lots of charities and housing associations joined the process, offering small units where groups of residents could live semi-independently.

What has happened? First, the number of adults with learning difficulties is increasing. This is partly because more very premature babies are surviving and partly because modern medicine has enabled many Down’s syndrome patients to survive much longer than in days gone by. Also a lots of children are being diagnosed with conditions on the autistic spectrum, some of whom also have learning difficulties. Today around 2% of the British population are classified as having learning difficulties. Around 60% of them live at home with their parents but as these carers age and become dependent themselves, they fret about how and where their vulnerable offspring will live. With good reason, it appears.

Today a report from the umbrella group Learning Disability Alliance Scotland (LDAS) publishes research that identifies more than 800 people with learning disabilities who have been inappropriately placed in care homes for the elderly. The youngest was just 19 years old.

Part of the reason is that there is less support available in the community. The Department of Work and Pensions is withdrawing the ILF. Some charities and housing associations have withdrawn from contracts to run supported accommodation because councils were not offering enough money for them to run them at an acceptable standard. This situation can only get worse.

LDAS, which used Freedom of Information requests and a survey of 220 care homes, to obtain their information claims staff are often not trained to communicate with residents with learning disabilities and that there is frequently a cultural mismatch between the needs of these residents and those that are frail and elderly. The report claims in 300 cases people were under 65 when placed in a care home and once installed, have little chance of moving elsewhere. There is no easy answer. First, we need better evidence about the extent of this problem, a job for the Care Commission. Then the Social Work Inspection Agency should review the practice, as LDAS suggests. Meanwhile, those in this situation need someone who will represent them. The yardstick of adequate provision should be what we would want for our own offspring in this situation.