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People with learning difficulties isolated in care homes for older people.

Campaigners are calling for an end to placing people with learning difficulties in residential care homes. But is there a strategy for an alternative, asks Sarah Wellard.

Keeping in contact with friends and family is something most of us take for granted. Yet, according to a new report by the Foundation for People with Learning Disabilities,¹ this fundamental right is often denied to people with learning difficulties who live in residential homes for older people.

The report finds that an alarming number of people with learning difficulties are being placed in residential care that does not meet their needs adequately. The research, based on responses from 530 registered nursing and residential homes for older people, found that about a quarter were accommodating people with learning difficulties, most of whom were younger than 75, the minimum age recommended by the Department of Health. The average age of all residents in the homes was between 80 and 85, but 40 per cent of people with learning difficulties had been accepted as residents before they were 65. The youngest resident was only 33.

The problem, as Dr David Thompson, author of the report and manager of the Growing Older with Learning Difficulties project at the foundation explains, is that homes for older people rarely provide the kind of support and services that people with learning difficulties need. He says: "People might be in a home for 30 years or more. It is a different situation from someone going into a home at the end of their life. At 65 people should be able to get out and have an interesting life, but they are being denied that."

Homes participating in the study had concerns about the levels of care they were able to provide, with four out of 10 saying staff didn't have appropriate training and a quarter believing that activities in and out of the home were inappropriate. Isolation of residents was widespread, with homes reporting that a third of people with learning difficulties went out less than once a week.

Thompson cites the example of a woman in her sixties who hasn't seen her sister for two years. The sister lives only a 45-minute drive away but is too frail to visit. The same woman, despite being very able, has her clothes bought for her by staff because no one has the time to take her out to the shops so she can choose them herself. Thompson explains: "The underlying problem is that there aren't the staff available to enable people to do ordinary things. Staff are often very conscious that they would like to do it. But they don't have the resources to give people a life outside their home."

A residential home for older people typically costs about £13,000 a year, about a third of the annual cost of shared living accommodation aimed specifically at the needs of people with learning difficulties. So it is easy to see where the pressure is coming from to push people with learning difficulties into older people's accommodation.

Rob Greig is director of London University's Kings College community care development centre and has just been appointed director of implementation for the Valuing People white paper² at the DoH. He believes another explanation may be that care managers are misinterpreting the philosophy of inclusion. "Learning difficulties services have quite rightly argued that people should have access to the same services as everyone else," he says. "People with learning difficulties often show some of the physical conditions associated with ageing at a relatively young age, but that doesn't necessarily mean that they should be in a home for older people."

However, the report found that the reasons given for people entering homes were largely unrelated to their own ageing. Most people coming from living with family moved because of their relative's ageing or death. Jean Collins, director of advocacy organisation Values into Action, says: "It is inappropriate and unjustifiable. Quite often the person would prefer to stay in the family home, and perhaps have someone else move in with them, yet this solution isn't even considered."

Sometimes a younger person is accommodated in an older people's home because their parent needs residential care. Collins regards such decisions as ill-considered and patronising, and points out that people with learning difficulties are rarely offered the kind of choices that the rest of us would expect. "How many people would really want to move in with their parents?" she asks. "I can see that some people might want to do this if their parent was terminally ill, but once the parent is dead there is absolutely no justification for them to stay."

Older people can also be casualties of so-called modernisation policies. When a long-stay hospital is closed younger residents may be moved into small-scale hostels and supported housing. But older people with learning difficulties often have to face the trauma of moving away from friends and care staff whom they have known most of their lives only to end up in another institution which is less able to cater for their needs.

South Gloucestershire's director of social services Bill Robbins is the learning difficulties spokesperson for the Association of Directors of Social Services. He says that, with the move towards person-centred planning advocated by Valuing People, care managers should be considering the best outcome for each individual.

He believes that a residential home for older people may sometimes be the right choice for a person with learning difficulties who is prematurely ageing, but adds: "In most cases I would find it hard to see that their needs would be met without a huge programme of community involvement. At the ADSS we would not think it was best practice if it was the usual policy and we would want to know why it was being recommended."

Robbins questions how many of the people identified by the study were placed privately, rather than by social services. The report found that a third of people in the study had had no contact with a social worker or case manager in the previous 12 months. So either people are falling out of sight once they are transferred into an older people's home, or their placement has never come to the attention of social services at all. The Foundation for People with Learning Disabilities wants to see all councils keeping registers of people with learning difficulties to prevent this happening.

Thompson also believes that people with learning difficulties should remain the responsibility of the learning difficulties team as they grow older rather than being transferred to older people's services. He says: "They are a different group of people with different needs."

However, Greig points out that the older people's National Service Framework is designed for people with learning difficulties. He believes the best approach is for older people's services to work closely with specialists in learning difficulties, and vice versa. "The challenge of Valuing People is about mainstreaming," he says. "It should be about a partnership between both services. It's a two-way responsibility."

So what is the likelihood of the present situation improving? The white paper's emphasis on person-centred planning and listening to what people want ought to mean that dumping people in the nearest home with a vacancy, irrespective of its suitability, will become a thing of the past.

But giving people with learning difficulties a real choice over where they live is another matter. Currently, most have to accept whatever is offered. About 60 per cent of people with a severe learning difficulty live with their parents. Often, they stay there until a crisis occurs.

Valuing People contains a welcome commitment to increasing choice and control over housing for people with learning difficulties. However, campaigners are worried about the government's failure to provide extra resources. Mencap has estimated that an additional 6,000 places a year, costing some £180m, are needed to give everyone over 25 a choice. Thompson says: "It's a step forward that the white paper recognised the problem, but there's no real strategy for doing anything about it."

Until new money is made available, nothing much will change.

¹ Thompson and Wright, Misplaced and Forgotten: People with Learning Disabilities in Residential Care for Older People, The Mental Health Foundation, October 2001. The report is available as a pdf file at www.learningdisabilities.org.uk/html/content/misplaced.pdf

² Department of Health, Valuing People: A New Strategy for Learning Disability for the 21st century, The Stationery Office, 2001

Recommendations from the report

- All placements of people with learning difficulties in homes for older people should be reviewed.

- Councils should keep a register of people with learning difficulties so that they are not overlooked.

- Older people with learning difficulties should remain the responsibility of learning difficulties services and not be transferred to older people's services.

- Greater priority should be given to helping people maintain social networks and family relationships.

- The National Care Standards Commission should consistently apply the lower age limit to older people's services.

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Tragedy prompts a restructuring at Norfolk

Anabel Unity Sale reports on the death of six-year-old Lauren Wright and the lessons to be learned from it.

Norfolk police was informed of the case.

The paediatrician saw Lauren twice that month, but said her bruises were compatible with her parents' explanations of accidental injury. Norfolk social services department asked school staff to monitor Lauren.

Another anonymous call on 12 April about Lauren's welfare was ignored.

Two social workers from Hertfordshire visited Lauren at home to arrange contact with family members living in their area. Hertfordshire social services contacted Norfolk to express concerns about Lauren's welfare on 26 April.

On 5 May Norfolk agreed to pay a home visit to Lauren, who had been off school ill. It was also agreed that a meeting should be held with all relevant agencies to discuss Lauren's case the following week. But Lauren died at home the next day when her digestive system collapsed after her stepmother attacked her.

So what went wrong? Norfolk's director of social services, David Wright (no relation), is the first to admit that Lauren's death was the result of "human errors".

The main problem, Wright says, is that he and his staff's state of alert "went from red to amber" because they took the paediatrician's word that Lauren's injuries were not the result of abuse.

"We should have had a case conference earlier," he adds.

Wright says that three lessons can be learned from Lauren's case. First, every time any social worker receives an allegation of a young vulnerable child being hit and injured, they should visit that child.

Second, he argues that it is critical for social services to read between the lines of what other professionals say. And finally, all staff - regardless of their position - must have the confidence to challenge decisions they do not agree with.

In light of Lauren's case, Norfolk social services department has now been restructured. It has larger assessment teams based on bigger geographical areas to make sure that no child can slip through the net.

Norfolk's Area Child Protection Committee has also introduced tighter criteria for calling child protection case conferences.

Wright denies that an independent public inquiry, such as the one being held into the death of Victoria Climbie, is necessary for Lauren.

He explains: "There is no added value to be had from an inquiry. It would be a distraction and a waste of money that I need to spend on front-line services."

But he has written to the Victoria Climbie inquiry's chairperson, Lord Laming, urging him to investigate those factors that appear to be central to both cases: poor inter-agency communication, high workloads, staff recruitment and retention problems, high public expectations, and underfunding.

At the time of Lauren's death Norfolk's western district children's social work teams had 421 cases, with each social worker having 30 cases. They were receiving an average 40 referrals a week, five of which were child protection referrals.

Wright is concerned that negative publicity from both Lauren's and Victoria's cases will make it harder to recruit, causing the pressure on existing staff to increase.

But the biggest lesson to be learned from both deaths is that joined-up working arrangements cannot remain management buzzwords. To prevent more suffering, this concept must become a reality for all professionals involved in the protection of children.

The deaths of Victoria Climbie and Lauren Wright have one tragic element in common: despite many opportunities, statutory agencies failed to intervene and prevent their suffering at the hands of relatives who were systematically abusing them.

Last week Tracey Wright was found guilty of causing the death of her six-year-old stepdaughter, and Craig Wright, Lauren's father, was convicted of manslaughter.

The case at Norwich Crown Court highlighted a catalogue of errors involving two social services departments, Lauren's primary school, paediatricians, and the police.

In spring 1999 Lauren moved into a house in the village of Welney, next door to her grandmother, with her father and his girlfriend Tracey. Welney borders Cambridgeshire and Norfolk, and on 14 March 2000 Cambridgeshire social services department received an anonymous phone call about some bruises on Lauren's face and neck. The same day Norfolk social services department received a similar call about Lauren's emotional and physical well-being.

As a result Lauren was interviewed at school and social workers discussed the matter with school staff. The same day her grandmother and stepmother were interviewed and Lauren was seen by a doctor at Upwell Medical Practice, who advised urgent specialised assessment.

Social workers sought an urgent appointment with a paediatrician, and the family protection unit of the Norfolk police was informed of the case.

The paediatrician saw Lauren twice that month, but said her bruises were compatible with her parents' explanations of accidental injury. Norfolk social services department asked school staff to monitor Lauren.

Another anonymous call on 12 April about Lauren's welfare was ignored.

Two social workers from Hertfordshire visited Lauren at home to arrange contact with family members living in their area. Hertfordshire social services contacted Norfolk to express concerns about Lauren's welfare on 26 April.

On 5 May Norfolk agreed to pay a home visit to Lauren, who had been off school ill. It was also agreed that a meeting should be held with all relevant agencies to discuss Lauren's case the following week. But Lauren died at home the next day when her digestive system collapsed after her stepmother attacked her.

So what went wrong? Norfolk's director of social services, David Wright (no relation), is the first to admit that Lauren's death was the result of "human errors".

The main problem, Wright says, is that he and his staff's state of alert "went from red to amber" because they took the paediatrician's word that Lauren's injuries were not the result of abuse.

"We should have had a case conference earlier," he adds.

Wright says that three lessons can be learned from Lauren's case. First, every time any social worker receives an allegation of a young vulnerable child being hit and injured, they should visit that child.

Second, he argues that it is critical for social services to read between the lines of what other professionals say. And finally, all staff - regardless of their position - must have the confidence to challenge decisions they do not agree with.

In light of Lauren's case, Norfolk social services department has now been restructured. It has larger assessment teams based on bigger geographical areas to make sure that no child can slip through the net.

Norfolk's Area Child Protection Committee has also introduced tighter criteria for calling child protection case conferences.

Wright denies that an independent public inquiry, such as the one being held into the death of Victoria Climbie, is necessary for Lauren.

He explains: "There is no added value to be had from an inquiry. It would be a distraction and a waste of money that I need to spend on front-line services."

But he has written to the Victoria Climbie inquiry's chairperson, Lord Laming, urging him to investigate those factors that appear to be central to both cases: poor inter-agency communication, high workloads, staff recruitment and retention problems, high public expectations, and underfunding.

At the time of Lauren's death Norfolk's western district children's social work teams had 421 cases, with each social worker having 30 cases. They were receiving an average 40 referrals a week, five of which were child protection referrals.

Wright is concerned that negative publicity from both Lauren's and Victoria's cases will make it harder to recruit, causing the pressure on existing staff to increase.

But the biggest lesson to be learned from both deaths is that joined-up working arrangements cannot remain management buzzwords. To prevent more suffering, this concept must become a reality for all professionals involved in the protection of children.