Today she is 29, and doing splendidly living apart from Mum and Dad, with two friends, in accommodation of her own. We are very proud of her and know what a difference Conductive Education has made to her life.
That's just to put into context the piece that follows, found while trawling for something else. I do not know who wrote it. Not me. Possibly someone called 'Jenny'. It seems to be based on an interview I gave the writer. I really do not remember. But it was written in 2002, shortly after Sarah had left school.
I have not amended or updated it - other than to correct the telephone number at the end. It is as it was written. A period piece with no contemporary relevance? You must decide. But I'd be interested in the recent experiences of other parents and can be contacted by email or by phone - or by comment below.
Hurtling into a void
Sarah Perrin has just left school.
She should be looking forward to going to college, meeting new friends or starting a job – all the good things about growing up.
But all there is ahead for Sarah is a big question mark. Like many young people with severe disabilities, she is ‘hurtling into the void’ - as a recent report from the Joseph Rowntree Foundation put it.
Sarah has cerebral palsy and her communication and mobility problems mean she needs one-to-one support. Now that the state’s responsibility to provide five-day-a-week schooling is ended, there’s little on offer.
She is still entitled to further education, but instead of hundreds of further education courses to choose from, Sarah has only one - a three day a week course in ‘independent living skills’ at the Sheffield College. It’s the only one the college can offer the necessary support on. And that may not be possible if transport isn’t provided – something which prevents many disabled people taking up opportunities on offer.
Her alternatives are one or two days in a day centre, staying at home or permanent residential accommodation – probably in the company of middle aged and elderly people.
It’s a bleak future for a young person who has aspirations to earn her own living and share a flat or house with friends her own age, who enjoys pop music and going out.
More and more young people with severe disabilities like Sarah are surviving into adulthood, but the Rowntree report says health and social services up and down the country are failing to meet their needs.
It talks of young people being ‘warehoused’ in day centres or residential units – instead of authorities providing the sorts of services that young people themselves want.
Sarah has already experienced adult residential care, says her father, Norman. Because she’s now an adult, she can no longer go to the local authority’s young people’s home, Chancet Wood, for the short breaks which help the family cope with the intensive care she needs.
“She used to enjoy her stays with the other children,” says Norman, “She now goes to an adult home for respite care . She has found the transition very difficult with no peer group and the youngest resident being over 30. The real problem is that Sarah’s main need is not for “care” but for interesting things to do, away from the family, like any young person. And such facilities do not exist.
Sarah is lucky in that her parents are determined she won’t end up in institutionalised care. Over the past decade they, together with other parents, campaigned to bring the Peto Institute’s conductive education for children with cerebral palsy to Sheffield. They’re determined now to show that integrated care and independent living arrangements can work.
But even for a seasoned campaigner, making sense of the fragmented services and getting the different authorities – health, social services, education – to work together over Sarah’s future is proving a daunting task.
“Mostly you learn about what’s available through the parents’ network rather than from the authorities,” he says.
Even where ‘strategies’ exist they don’t always work. All children with a Statement of Special Needs have annual reviews to plan their ‘transition’ to adulthood. In Sarah’s case, it has failed because she has left school and her future is still up in the air. “We cannot talk with Sarah about her future because at the moment she has not got one,” says Norman.
“After 19 years it’s come to this, that there’s nothing for her, no courses, nowhere she can live independently and make a life of her own, that doesn’t depend totally on her family sorting it out,” he says.
Families are willing to take their share of the care, but they cannot be left to cope alone, he says. If they are, then one or both of the parents has to give up work – which means they also become dependent on society instead of being productive.
And if the care burden becomes too great, families might just opt out all together, leaving the taxpayer to pick up the whole care bill instead of part of it.
“There’s one couple, I know” says Norman, “who finally gave up on the battle with their local authority to get resources for their adult son. In the end they transferred their house into his name, and moved out.”
“They rang up social services and said they’d left home and that their son was living with one of his disabled friends at the house. Social services were round within 12 hours.
“Actually the parents had bought a house nearby, but it was the only way they could get the support their son needed.”
Some parents feel the problem is basically one of resources, but Norman Perrin believes that it’s more than that. It’s do with a mind set that looks for ‘economies of scale’ rather than building individual solutions.
When residential accommodation can cost £1,000-£1,500 a week, he says, surely that money can be better used through a system of ‘direct payments’, so individuals themselves can buy-in support workers and set up independent living arrangements with a small group of friends? So far only about 5,000 people in the whole of the UK have had this choice.
Paces Centre in Sheffield is pioneering one possible solution – a project to help people with disabilities set up their own enterprises with support - both in terms of accommodation, business advice and support workers to help them through the physical barriers.
If people with disabilities can be helped into a job in a supported environment it makes their lives more fulfilling and reduces the burden on society.
“But most of the really exciting innovations in this direction are coming from the voluntary sector. We need local authorities to be more willing to work in real partnerships and be more open to new solutions. Somehow we have to encourage a torrent of inventive new ideas for this group of young adults which will make a reality for them of social and economic inclusion.
Norman is keen to stress that this not just a Sheffield problem but a national one, as the Joseph Rowntree Report makes clear.
Meanwhile, Sarah is left wondering what will happen to her when her contemporaries are beginning their new lives in September.
Readers who may be interested in sharing their experiences and looking at what the future might hold, can contact Norman on 0114 284 4488.
