Employment can be more than a fantasy for young adults with Down's syndrome, writes Jennifer Currie.
Kevin McGeechan can't get over the fact that at the end of each week he is handed a wage packet. Containing real money. But as an employee of St John's Hospital, Livingston, he is perfectly entitled to every penny, as his mother Christine explains to him. Still adjusting to the fact that his days of unpaid work experience are well and truly over, Kevin, like other school leavers, is getting used to the perks that go with being recognised as a responsible individual.
His experience of real-world work has set a precedent at Pinewood, a school for children with severe and complex learning difficulties in West Lothian. Kevin, 17, who has Down's syndrome, is the first pupil in its history to enter employment straight from school. "He has really set a standard for the other children," says Ruth Bayne, Pinewood's headteacher. "The school is simply buzzing with excitement."
The same can be said of Kevin, who is setting about his new role as a hospital porter with unending enthusiasm. "He's like a budgie when he comes in from work," says his father, Owen. "When we ask him to keep it down a bit, he says 'but why, when I'm happy?'" Nestled in a grassy campus on the outskirts of Blackburn, Pinewood is a day school with 72 pupils between the ages of five and 18. Kevin entered Pinewood at the age of five, and left at Easter in a blaze of glory. As a pupil, he followed an elaborated version of the 5-14 curriculum. "It is not watered down in any way," says Mrs Bayne. "We carefully adapt the mainstream subjects to suit the needs of every pupil in every area."
When Kevin announced during his final year that he would much rather get a job than go to college, his parents and teachers were slightly thrown. "I was speechless at first," recalls Mrs Bayne. "Kevin's name was on a waiting list for a life skills course at a nearby college. To take him off that would really burn his bridges. But we respected his decision and looked at the alternatives."
The options were limited. "Kevin was getting too old for school," says his mother. "I knew that he had a lot more to offer than just going to a day care centre for the rest of his life, and he had already decided that college was not for him. Also, the small number of college places available each year made things harder."
Kevin had applied to the same course the previous year, but unlike most of his peers, he was unsuccessful. The college said he was too young. Kevin was unbelievably disappointed, and it put him off the idea.
Acting on concerns for her son's immediate future, Mrs McGeechan arranged a work placement at St John's Hospital through a former colleague. "I felt confident enough in Kevin's capabilities to ask for the favour. More parents should think about using their work contacts like that."
Kevin made such an impact that his employers offered to consider him for the next portering vacancy. Like every other candidate, they would interview him for the post. There was to be no special treatment. "We assessed him on his ability, not his disability," says John White, head of general services at St John's. A preliminary period of assessment ensured that Kevin would not be put in any awkward positions. "He is treated as a normal employee."
Kevin now has a permanent contract and works 20 hours a week at the hospital. His duties include escorting patients to and from the operating theatre, handling medical gases and manually lifting patients. He was accompanied for the first few weeks by an employment development officer from Intowork, a specialist-supported employment service funded by West Lothian Council. Once again, it was emphasised that Kevin should not receive any more training than an employee without a disability.
"Employment should be real and open," says Robin Pickard, Kevin's Intowork development officer, who now works with Kevin for only two shifts a week. "I don the porter's outfit too, and make sure that Kevin is happy and that he is treated fairly. It is just as important to ensure the staff are trained as well. They have to move away from a caring perspective to valuing Kevin as a co-worker."
The McGeechans readily acknowledge the importance of Intowork's role, although they got this far unaided. "Although the job was ready and waiting for Kevin, I was just beginning to worry that I was pushing him too far too soon," admits Mrs McGeechan. "But Robin looked at Kevin's disability and assessed it honestly."
Kevin is also setting standards in West Lothian, according to Intowork statistics, which show that of 7,500 people with a disability of working age in the region, only three in 10 are employed. The rest feel excluded from the system, or are unaccounted for.
"Real work experience is not a bolt-on part of a special needs education," says Mr Pickard. "There is no through system, so people can come to us at different stages with completely different aspirations. But it is important that people with a disability are aware that they can go to work, and that new pathways are opening up every day."
These pathways need better signposts, says Jennifer Wishart, professor of special education at Edinburgh University's Moray House Institute of Education. In a study of the transitional pathways of 35 young adults with Down's syndrome carried out between 1987 and 1993, Professor Wishart and her colleagues George Thomson and Kathleen Ward found that despite an increase in legislation aiming to improve integration, the extent of positive change was negligible. "A disappointingly narrow range were placed in real employment," says Professor Wishart. "This was due to a lack of opportunity as opposed to a lack of ability. The hoped-for jobs at the end of an adult training course are not always easy to come by." She stresses that it is not the fault of the education providers. "The difficulty is finding suitable employment opportunities."
Suitable does not necessarily mean sheltered, however. "There is absolutely no reason why a young person with Down's syndrome cannot hold down a mainstream job," says Professor Wishart. In this context, suitable means a position within a supportive - but not subsidised - environment, so that there is no sense of risk-taking on the part of the employer, or vulnerability on the part of the employee. "With a support structure in the work place," says Mr Pickard, "there can be no concept of a blame scheme."
The 1995 research paper concluded with a warning. Society was, and still is, in danger of marginalising people with Down's syndrome. None of the 35 young people researched had had any mainstream secondary experience.
Today, many education authorities prefer parents to integrate their special needs child in a mainstream school. "There is a trend towards dismissing special schools," says Professor Wishart. "But it is important that there always remains a choice."
West Lothian's policy is to integrate where requested. Kevin's parents were content with his schooling and chose not to opt for the day release system offered at Pinewood. "One of the primary aims of integration is to help develop social skills," says Mrs Bayne, "and Kevin has always been a positive, co-operative young man."
Twenty-one Pinewood pupils have been "integrated" in the past decade. Pupils are encouraged to complete short-term work placements with local employers. "The staff do have to go out and knock on doors," Mrs Bayne admits. "Employers need to give the young people more of their time and attention. That is why the most remarkable aspect about Kevin," she concludes proudly, "is that he really is paddling his own canoe."
Yet lurking behind the boundless, genuine praise for Kevin's success, is the feeling that he should not be a West Lothian first. There are not nearly as many young people with Down's syndrome in employment as we would like, says Karen Watchman, director of the Scottish Down's Syndrome Association. "Employers just have to get over the initial reluctance of hiring someone with a disability. Kevin broke down all the barriers by being a responsible worker," says Mr Pickard. "People were sceptical at first, but he educated them."
The only sceptic now is Kevin, who has noticed that his coach is slacking off. "He has started asking Robin why he's not doing anything," laughs Mrs McGeechan, "when it's just because he's doing all the work by himself."