NDTi called this conference, What’s going on? Rosemary Trustam heard expressions of anxiety about the trend towards bigger providers but also some inspiring stories.
This conference reminded us that, against a backcloth of cuts versus human rights, we have to fight to stop the continued use of Assessment and Treatment Units and help people have local community supports. We also heard about how some individuals whose behaviours have been challenging have had their lives turned round.
Bill Love, NDTi’s Head of Development Support and Training, wondered if the range of provision is really increasing or is it more of the same? With a lot of bigger providers taking over, is this a good trend and are we developing really local provision?
He questioned whether the actual costs are known, if commissioners know how to develop markets. He said Somerset County Council is working with Community Catalysts who work with families, individuals and others in very local areas. A recent worry is that residential care is being seen as cheaper. With older people with learning disabilities more likely to be moved into residential care and nursing homes, what are we doing to support them to be in the community as they age? Two evaluations of large residential homes in Ireland and Scotland, where a big investment had been made in people’s rights, showed it is not simply a case of community versus residential care.
The story of Rishard and his mother showed how fragile are people’s life chances. In Rishard’s case, as so often, his family’s perseverance was crucial. His behaviour deteriorated when he moved from primary to secondary school. Rishard has Down’s syndrome and as he became more aware of differences he rebelled against his treatment. He wanted to be the same as his brothers.
Violence and tears
Rishard’s story could well have been one about a placement in an Assessment and Treatment Unit. His behaviour became increasingly difficult with violence and tears, causing Mum to suffer both mental and physical illnesses. Service solutions offered psychology and counselling which never got to the root of the problem. Rishard said the best thing the counsellor taught him was to tie his shoelaces! The family was isolated with Rishard staying mainly in his room as, if they dared to get him out, he could be aggressive. They suffered three years of hell, not knowing who to turn to for help.
What changed? Almost by accident Grapevine got involved when Mum’s sister saw an item in the paper. From the start, Rachel and Naomi spoke a different very person-centred language. They looked for clues in what Rishard said, interpreting what he meant. Two clues were his wish to be like his brothers and for a part on Eastenders. They took him round local drama groups and found one he liked with mainstream peers, the EGO performance company in Coventry. He now has a role in the next production, has got involved in youth projects and made lots of friends. EGO created a circle of support from what he’d told them and what they could do. His first job was working in the cafe at EGO and later a friend who ran a bar gave him a job.
Then a friend of Mum’s saw an advert for scholarships to the Central School of Speech and Drama in London and Rishard got a place (he’d been turned down by local colleges in Coventry). Mum organised a network of friends in London to help him get to the college and he has now auditioned successfully for a part in a TV series.
What made the difference for Rishard was that the people listened to him carefully and believed in him. They had the right values and training and supported the process of choice and control without taking over.
Lack of connections
Clare Wightman from Grapevine said the problem for people is often their lack of connections, not necessarily their disability. The solution to people’s loneliness isn’t about staff. She quoted Rob Cutler speaking at TASH (The Association for Persons with Severe Handicaps, Washington) in 2003. “I have support staff who don’t keep people company but do keep me lonely”. Services need to think about places where they can go with a friend or to make a friend – in neighbourhoods, education, sports, arts, faith, employment, volunteering. It’s skilled work requiring dedication. People don’t make the most of the opportunities. An example was supported housing tenants who never went to the residents association meetings. People lack strong positive connections with people without learning disabilities, such as with neighbours who see things that could keep them safe.
In his opening address, Rob Grieg, NDTi’s CEO, said that the basic rights and freedoms to which we are all entitled should be our starting point. Without them, at best people don’t get a fair chance and, at worse, they get abused. With cuts eroding rights, inclusion is disappearing; there is less support to get employment, housing rights are being denied and health professionals are not being trained. We have to ensure that Norman Lamb’s promised rights-based Green Paper is effective and check the UN report due out shortly to see how the Government is doing on disabled people’s rights. We have to keep vigilant on people’s rights.
Outrage
George Julian, free lance consultant, described how her outrage had inspired her to join the 107 days campaign. She was joined by Mark Nearey, whose son was unlawfully taken from him when he had flu’, and by barrister Steve Broach who offered to help them make into law their wish to make it a right to be entitled to live in your own home. From this has come the proposed Disabled People (Community Inclusion) Bill 2015 (LBBill). She and Dr Sarah Ryan urged people to consider checking out the Bill and to sign up to support it if they agree https://lbbill.wordpress.com/
Paul’s father told a contrasting story of his son’s journey from a 52-place residential school where he became unhappy at changes, his behaviour deteriorated and he was head butting walls, windows and doors. This led to a cocktail of drugs effectively putting him to sleep in the day but his behaviour was still unpredictable. Things changed when he was moved to a six-person home run by Dimensions where he had his own space and positive controls. After a very detailed assessment, and a difficult six months, things improved markedly. Over the year, his drugs were reduced to one, he lost excess weight, and is now active and eating healthier food. He looks and feels better. He takes part in the community, goes sailing, horse-riding, out in his mobility car, and can engage at home and be on his own. Part of the solution was having the right support workers who were relatively laid back but able to set the right boundaries. Also important was the right environment and controls; for example, motion sensors picking up his movements if he’s upset or unwell, a bath water control which cuts the water off if it might overflow, locks that open if there’s a power cut. Apart from his improved life, although the direct support costs haven’t changed, the indirect costs, like psychology, doctors and drugs, are markedly less.
We heard from Fiona French about how her life changed when Certitude helped her design her own package which helped her move to where her friends are, develop a good social life and reduced her support from seven days a week to two sessions on two days.
Rob Grieg pointed to evidence that anyone can be supported to have a job. The Government saves £3,500-£7,000 when someone gets a job as people have fewer benefits, pay tax and need less or no social care, making a saving of £5 for every £1 spent. Too much money is being spent on job preparation with no evidence that it works while there is evidence that supported employment, on which only a third is spent, does work. He suggested the only way to change this is to get senior people signed up to SE, ensure providers know what they are doing and ensure the results are tracked.
Step-change
A step-change in maturity and trust is needed, questioning the current commissioning model, said Chris Hatton, researcher at Lancaster University. If people had a guaranteed personal budget for ten years, they would be able to plan longer-term and for contingencies. He advocated a ‘Ninja Task Force’ led by people with learning disabilities and families who would have control of the money, taking some off local commissioners, and with the money transferred from hospitals fund good local personalised supports. Local commissioners would only get funding if they showed they could be trusted.
People felt there was a big divide between children’s and adult services. Children’s services too often focus on the family rather than the child when they need to do both. Children’s and family services are not ambitious enough and there is less emphasis on enablement. They are not grounded in local communities and do not search out local networks. Chris suggested ‘a grown-up conversation’ should be had a lot earlier with children, moving beyond the family early on.
Full conference presentations at: http://www.centrevents.co.uk/ndti2015.html
