Just like everyone else

For two decades, we have encouraged intellectually disabled youngsters to go to mainstream schools. For two years, the Government has funded groups to find and support these young adults into employment. Critics say the scheme is flawed. Joseph Barratt reports
Imagine going through school just like everyone else. You learn, you play, you develop into a young adult, you dream of your future. Just like everyone else. When you finish school, friends start careers or head to university to pursue those dreams. Along comes someone you've never met who says you're not capable of achieving your dreams. More people tell you the same thing. Your dreams might be as simple as working in an office, filing or answering phones, but no one believes you're capable of anything other than the most menial job ... if that. What then? The dreams don't disappear, but you will be stonewalled every step of the way. You spend more time at home, you get lonely, you get depressed. The young mind that has been nurtured over 18 years is left with nothing. For hundreds of Auckland families who have children with intellectual disabilities, this is reality. Work over recent years has aimed to fix this - by painting some hope into those dreams - but there is still a long way to go.
AT THE ENTRANCE to Papatoetoe South Primary School, a smile beams from behind the counter. Meet Sarah Jones. She's busy doing whatever needs to be done - answering phones, filing, greeting visitors, data entry. She makes jokes and chats with everyone around her. Sarah's just like everyone else - except she has Down syndrome. What started as work experience a year ago turned to a two-day-a-week paid position after school principal Mark Barratt saw her potential. For the other three days of the work week Sarah is at Manukau Institute of Technology on a foundation studies course for young adults with disabilities. If her parents and Mr Barratt had taken the advice of the people who were supposed to support Sarah through the transition from school to her future, she would never have been hired for the position. Mr Barratt says that would have been a disaster. ""You need to look at what they are capable of, not what their disability is"," he says. ""We've employed Sarah for a real job. She works just the same as everyone else and gets paid just like everyone else. ""We've had to train her and tell her not to bring her cellphone to school, but that's something we would have to do with any teenage girl. What's more, her ability to take on more complex work is constantly increasing. She can type quicker than me and she picked up data entry really well."" Sarah excels in situations where she has adequate support that helps rather than demeans her, he says. ""When we first hired her, we had people coming up to us saying she wouldn't be up to it. Well, she has been and she is doing a great job". For Sarah's parents, Bronwen and Stuart Jones, the work has been a godsend. They realise it only came about because a number of passionate people took an interest in their daughter. ""She had done work experience in the past, in a supermarket and packing cosmetics. It was good for her: she learned important things like the responsibility of turning up to work on time every day"," says Bronwen. ""What she also learned was that she didn't want to spend her days counting as she packed things into boxes"."
STUDENTS CLASSIFIED as having high or very high needs receive money through the Ministry of Social Development's On-going Resourcing Scheme (ORS). When they leave school, the money stops. It's called transition, where these young adults with intellectual disabilities finish mainstream education and must face the realities of adulthood with a disability. Two years ago, the ministry began funding transition organisations to find and support young adults with disabilities into employment. However, critics say many of these young adults won't get far without pro-active and connected parents. IHC advocate Cindy Johns says it would be great to see more cooperation between high schools and different services. ""If more work experience could be provided in those early days, it would help these young people decide what sort of work they would like to get into, and it helps connect them to local businesses"." Low expectations can be a barrier. ""The reality is, many of the ones that get jobs end up in food or hygiene jobs on a minimum wage"," says Ms Johns. Mr Barratt also chairs Auckland Primary Principals' committee on special education. He says some of the services lack vision. ""Until about a year ago, we experienced eight or nine years of unprecedented economic progress. Yet the number of disabled people employed hasn't increased. The Ministry of Social Development has never branched out and tried different approaches. ""We need to get these people into real jobs. There are some big employers that have a good attitude about it, yet the ministry has never, never approached them about working together. "'It's not just about money, it's about thinking creatively."" Sarah's parents experienced this first-hand. ""We had almost no communication after she finished school other than one meeting and a phone call"," Bronwen Jones recalls. ""Sarah wanted to work in an office. We managed to get in contact with Mark at Papatoetoe South and he offered her work experience. "'We thought it was a great opportunity, but our supposed support people told us Sarah wouldn't be able to do it. These are people who might have met Sarah only once or twice, if at all. ""Well, she went, and she is doing great. When expectations are raised, then she rises to that level. We don't expect special treatment for her.""
SARAH'S PARENTS are not the only ones in the ORS boat. More than 500 people turned up to an Auckland expo on transition last year. The hall was packed with people seeking more information on options for their intellectually disabled children. In the presentation, three families spoke of their experiences with the current system. All were critical. In charge of allocating funds to the 14 transition organisations is the ministry's Anna MacNicol. She says more than 60 people went through the programme last year, and she believes they are reaching many parents through their marketing approach. ""We had been running a pilot project for four years, but last year was the first year it was rolled out properly. ""I hear a lot of success stories from the organisations but we will keep tweaking it until we get it right"," says Ms MacNicol. ""We will keep marketing as much as we can to get the message out to as many parents as possible and we try to focus on the individuals as much as possible. ""There is also a lot of work going into getting these students when they are in high school. We are trying to get in contact with them and their families from around the age of 14."" Heather Taylor is a transition specialist at Elevator, a recruitment consultancy offering jobs to people with disabilities. In the past six years she has helped place around 90 young adults in new roles, either paid or volunteer. Her role is to help students find what they want to do, but she admits more could be done. ""It's early days with the programme. It's important we work on listening to the students and then keep up communication with both them and their parents"," says Ms Taylor. ""It would be good if more affected people could get enrolled in the transition programmes. It shouldn't only be the ones with pro-active parents who get assistance, but I think things are improving."" Money needs to go into other, related, areas. ""We know that transport is a big issue for many of these young people. It's a difficult hurdle for many of them"," she points out.
SARAH'S HAPPY. She has a job she loves and the support she needs to continue to develop her skills. Stuart and Bronwen realise the system has improved greatly in the past couple of decades but they hope those improvements continue. ""These kids are capable of so much more than people give them credit for. It just takes someone to give them a chance"." Rachel Allen, a 17-year-old in her final year at Auckland Girls Grammar who also has Down syndrome, is a good example. She's a bubbly young woman. Her mother, Jacqui, says she has lots of friends and is relatively independent. Transition is daunting for the family, but Rachel - like many of her schoolmates - has decided she is going to study next year. She has applied for Unitec and hopes to get into its foundation studies course. There is some scepticism about these courses. One person told The Aucklander it simply delays transition. But Jacqui thinks it's a great idea. ""It's another option for them. Rachel will get the opportunity to study at the same place as her friends. It's an increase in responsibility for her as no one will be telling her to go to class. She's going to have to be self-motivated and be organised."" Just like everyone else.
The Parent and Family Resource Centre provides information and guidance for disabled people and their families. See www.parentandfamily.org.nz Ph (09) 636 0351
Disclosure: Mark Barratt is Joseph Barratt's uncle.