Cuts to Adult Care: Friends & Family Group Forum statement

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Cuts to Adult Care - Friends & Family Group Forum statement: No Return To Winterbourne

The Family and Friends Forum and its supporters urge Rochdale Council to look again at solutions to their government-sponsored financial problems and reject their plans to curtail the supported living scheme.

Pat Sanchez, secretary for the Friends & Family Group Forum, said: “It was a very good meeting on Monday (24 October) and people were very determined not to see a return to the past.

“The councillors and officers keep stressing that no-one will be moved against their will but parents were worried that those people who have no parents or family, or whose family lives too far away to be involved in their lives, would also need protection.

“The council officers say there will be an assessment of need beforehand and that there will be independent mental capacity advocates involved, but the families were not convinced that people would get a real choice.

“If they’ve already earmarked a building and are adapting it they will want to fill it and if they can’t fill it with people who are able to decide against the move, there will be a great temptation to decide that moving in is in the best interest of those who have no one on their side.

Friends & Family Group Forum statement: No Return To Winterbourne

1. For years before the 1980s families who were no longer able to cope with their severely learning disabled members had nowhere to go. People with moderate learning disabilities could stay at the residential hostels but people with more profound difficulties had no choice other than the long stay hospitals, or very difficult to obtain – or fund - private provision.

Families and friends struggled for many years, even decades, to get their learning disabled relative or friend out of these large institutions such as the Calderstones Hospital or the learning disability hostels. They were places where some learning disabled people had been abused and where many had felt distress and been deeply unhappy. Consequently families were delighted when their relatives were offered a supported living home, within easy access and at the heart of a community they had been familiar with as a child.

2. The Council has a duty of care to the people it cares for. Family members, carers and friends of learning disabled people fear that cost savings the Council wishes to see will be made by reductions in support hours and that moving highly vulnerable people into large residential units will once again expose them to the risk of neglect, abuse or other mistreatment. Moreover, many families and carers believe that institutional care has led to developmental problems with learning disabled people, a risk that would face new tenants of these buildings.

3. Family members and friends are also very concerned that the assessments planned before any moves are made might not be objective. Assessments done with a particular aim in mind, that is, to determine whether someone should move into the new development or whether their needs could be met with fewer support hours, may well produce skewed results, as has happened elsewhere.

4. One of the principal aims of the supported living programme was to give learning disabled people as normal a life as possible. They were to access local community facilities wherever possible, rather than special services for learning disabled people. This enabled many to form friendships or be on good terms with their neighbours, to take advantage of local facilities such as their local pub, snooker hall or community centre and meet and become familiar to and be accepted by non-disabled people. Previous living behind high walls excluded them from the community.

Consequently, non-disabled people were and sadly still often are uneasy around or even fearful of learning disabled people. Living in a block of flats tenanted exclusively by learning disabled people is not normal living. It does not allow them to feel part of the community nor does it encourage the population at large to overcome their fears or prejudice.

5. Supported living homes are unobtrusive, similar to many other houses in the area. A large development of flats exclusively for learning disabled people will not go unnoticed and could well become a target for anti-social behaviour. It could be perceived as a ghetto. Previous misconceptions and prejudice about learning disabled people might well re-surface provoking opposition to the development and to its residents.

6. The group considered that moving learning disabled people with dementia into more appropriate accommodation was a separate issue completely. However, at the consultations with families and carers this issue was confused, with officers suggesting that special accommodation for learning disabled people with dementia would also house those learning disabled people over 53 years old with other chronic illnesses. The meeting considered this was totally inappropriate and likely to exacerbate those conditions as well as provoke confusion in those hitherto untouched by it.

7. The meeting also noted a general lack of specialist accommodation for people with dementia in the borough and suggested that any facilities built for people with dementia should be available to the whole population with dementia, whether learning disabled or not. This would also have the advantage of removing possible resentment at special treatment of learning disabled people and encouraging understanding.

It was also noted that current best practice is to allow people with dementia to stay in their own homes, where they are familiar with the layout and the surroundings. This allows the disease to progress much more slowly than when people are moved to residential care.

8. The meeting felt that the primary purpose of the changes being planned was not, as stated in the consultation, to improve the quality and variety of accommodation for learning disabled people but to reduce costs. However, no information has been given to parents, friends and carers as to exactly how those costs savings are to be achieved.

9. Family members and friends of learning disabled people have long and often painful experience of the needs of their cared for people. When they have no longer been able to care for their family member at home, they have often tried various forms of support. They know what has worked, and what has not. Supported living may not be perfect, but it is the best solution they have found. They do not believe that going back to large scale residential complexes will be any improvement on what their family members have now.

Their family members are happy where they are now. They will not want to change, nor understand any ‘necessity’ to do so. Families are also familiar with the often-challenging effects of change on their learning-disabled people and are most reluctant to inflict change unless absolutely necessary. Families too are ‘experts’ and should be listened to.

10. The Council officers have stated that they will not force anyone to move out of their home. They do not say, however, how they will be able to fund homes that may be rendered unviable if some of the residents are moved into other accommodation and no other suitably ‘matched’ tenants are able to move in.

Providers who have unviable homes and are obliged to pay the redundancy costs of staff no longer deemed necessary may well be forced into bankruptcy. The consultation does not say how remaining tenants of such a provider will be able to remain in their homes.

11. The meeting was very concerned at a situation in which many of the people currently caring for their family member may have to lose their jobs or have no guarantee of continuing to care for the same people. They wonder, indeed, how this is possible if their family members are to continue to get the support hours they need.

Until a decision is made, there will be considerable instability in the supported living homes as staff, worried they may not have a job in two or three years’ time and needing to be sure they can pay their mortgages and support their own families, begin to look now for more stable employment. ‘Instability’ means new staff or unfamiliar agency staff coming into people’s homes and performing very personal care tasks: this is not something anyone, let alone learning disabled people find easy to deal with and can provoke behaviour that staff find difficult to deal with.

Learning disabled people enjoy a good relationship with their own dedicated, caring staff and will be devastated at losing them. Again, these feelings of loss may well translate into challenging behaviour or mental illness which will lead to a need for increased staffing, not a reduction.

12. Learning disabled people want what everybody wants: a home of their own where they are free to pursue the activities within their capacity that they choose. They have a right to a secure home and they have the right to benefit from the support they need to enjoy this. They should not have to move to a special ‘learning disability’ facility to achieve these rights.

13.There will continue to be a need for residential accommodation as today’s severely disabled children reach maturity and wish to leave the family home or whose challenging behaviour makes it very difficult for their families to continue to care for them at home.

For the reasons outlined above large scale accommodation will continue to be inappropriate and potentially highly damaging to their physical, mental and emotional health. They will want – and need – supported living. It would be unwise to jettison this model of care when it answers the problems of today and tomorrow.