Service Providers in Their Own Voices Young Adults, Families and Transitions Yosheen Pillay (PhD Candidate) University of Southern Queensland Yosheen.Pillay@usq.edu.au

Systems Perspective What are the factors that facilitate or inhibit successful transition to adulthood for young adults with ASD, from the perspectives of service providers?

Transitions Post-secondary Education completion Competitive paid employment Independent living Social network Sense of accomplishment

Ecological Systems Theory (Bronfenbrenner, 1979)

Prevalence in Australia Australian Bureau of Statistics, 2012 1 in 160 children diagnosed in 2006 1 in 63 children diagnosed in 2012

Costs

NDIS Person Centred Approach Self-managed Funding High Functioning ASD Invisible Dis/ability

Government Service Provision Disability Employment Services Disability Service Providers Needs Assessment Waiting List Lottery System

Focus Groups Qualitative DES Focus Group DSP Focus Group What are the specific challenges and successes working with and supporting young adults with ASD? What are your transition experiences with families of young adults with ASD? What are the strengths and weaknesses within the model of service provision?

Thematic Analysis Recorded and transcribed verbatim Generating codes Themes and sub themes Best fit Refining Names Analysis and Results

Themes Emerging from Thematic Analysis

Theme 1 Collaborative Relationships Family Challenges “Also moving out of home, and moving into a college and stuff like that, some of these young people have been found to be led astray by other adults in the community, because they’re so gullible, parents don’t have much support or say because these children are over 18, legally they’re adults”

Theme 1 Collaborative Relationships Family Challenges “Some parents would like the kids to live independently, and that’s a massive transition as well, on top of finding a job, getting used to the system and finding a place for themselves or a house share, they need social skills or even independent skills and that can be tricky. There are no transition housing for them to just live into a house share, and that is a massive stressor “

Theme 1 Collaborative Relationships Family Expectation of Service Providers “I had a kid that I worked with. He was very specific. We got him a job in an electronics company, and his mum decided it was the wrong job. She wanted us to find him more the robotic side of it. I have to say in trying to keep them in employment it’s usually the parents that are an issue for us “

Theme 1 Collaborative Relationships Family Expectation of Service Providers “A lot of the people that we support in that age group, their parents are quite often on the spectrum, so there’s that link breakdown again, because that communication drops quick and you can’t share that information in a way you maybe need to”

Theme 2 ASD Specific challenges Service provider experience of ASD “Behaviours were difficult to manage, service providers were reluctant to help with support, because (a) they didn’t want to put their workers in danger, and (b) the young person was simply too hard, even though that parent desperately needed that help that child was put in the too hard basket “

Theme 2 ASD Specific challenges Service Provider Experience of ASD “We don’t have the staff or the support, in other words if we have kids with high needs, with behaviour issues we can’t really deal with, we don’t have the staff “

Theme 2 ASD Specific challenges Employer Perceptions of ASD “We don’t do the ASD when we’re talking to employers, large employers aren’t really interested, its costs them more to administer it than its worth”

Theme 2 ASD Specific challenges Employer Perceptions of ASD “They’ve all got policies in place, saying yes we will support. What happens is hugely individuals are held to able-bodied criteria, and so you set yourself for failure straight up…they’re looking at that person as an irrational individual with narrow opportunities and flexibilities “ “A lot of employers nowadays want people to multitask…, and that’s where it becomes a real problem, trying to say to them, we’ve got this person who can only do this and this”

Theme 3 Organisational Influences The School System “I would work at the schools and I would take them in a group how to hand out resumes, and we would go and get interview clothes, it was actually preparing them for work and at the end of that I would find them work. You know if I started working with them in grade 11 by year 12 most of them, had a part time job or work experience for one day a week, but that’s all gone now”

Theme 3 Organisational Influences The School System “I got asked to sign a bunch of kids up at a school, and when I turn up for these 5 students, to register them, there’s about 22 kids” “If they don’t get captured during the school period, they will get lost in the adult system, because they don’t have a very obvious disability”

Theme 3 Organisational Influences Service Provider Infrastructure “We have expectations on us, because we have to pay the bills, the lights have to come on and that sort of stuff, the government judges us equally. So we have our star ratings, and, we all pride ourselves on how well we do, and they’re all external pressures and in the middle of this we’re working with people who really don’t fit, we’re trying to put a square peg into a round hole”

Theme 3 Organisational Influences Service Provider Infrastructure “Because we’re driven down the outcomes based, performance based, as you get people come onto your case load, you’re going to look for the easiest people to place. You’re not going to want to work with the people down the bottom. You’re going to have to have to do a lot of work with them. They just sit at the bottom, swimming around “

Conclusion Quality of life Employment outcomes Social role attainment Economic level Independence

In their words… They carry some incredible traits, positive traits We end up supporting mum and dad It’s not about what you can’t do, but what you can do and how well you can do that job There’s a stigma attached there as well We don’t do the ASD