More than a “disabled person”. What is graduation for youth with intellectual disabilities

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More than a “disabled person”. What is graduation for youth with intellectual disabilities
More than a “disabled person”. What is graduation for youth with intellectual disabilities

Leaving school and figuring out what comes next is a challenge for young people. It is even more difficult for people with disabilities. It is often a time when support is withdrawn as they leave the highly structured school environment.

We asked young people with intellectual disabilities about their experiences of transitioning from school to adulthood. Our recently published research suggests that pre-transition planning for school leavers with disabilities is inconsistent or lacking. Most participants felt excluded from making decisions about life after school and needed support to access and navigate the National Disability Insurance Scheme (NDIS).

After school, most participants yearned to find paid work, friends and a life partner, but felt they were missing out on these typical adult stages. They told us that it was difficult to find service providers to help them achieve their goals. Many felt isolated and in a perpetual state of transition.

Read more: Part-time work is valuable for disabled people – but full-time work is more likely to attract government support

The promise of “choice and control”

School transition policies and guidelines exist in all Australian states.

Shared characteristics between these guidelines include early planning, person-centeredness, and ensuring collaboration between family, school, and services.

A decade ago, Australia changed the welfare model of disability support to a market-based, consumer-focused system. The NDIS promised to be the cornerstone of this, offering participants greater “choice and control” over new skills, jobs, greater independence, quality of life and improved social participation.

We wanted to understand the experiences of today’s young Australians with an intellectual disability as they plan to leave school and move into adult life.

Through individual and group interviews, 27 young people with intellectual disabilities (15 women and 12 men aged 19 to 33) told us their views and experiences of leaving school in New South Wales, Queensland and Victoria.

Their stories highlight how much more needs to be done to empower young people with intellectual disabilities.

What we were told

Firstly, many young people told us that they felt left out of school transition planning, with most of the decisions being made for them. There were limited, if any, opportunities for them to explore opportunities after school. As one participant said,

I don’t want people just making choices for me.

Second, all participants found accessing NDIS funding complex. They relied on parents or other advocates to navigate the process, ask the right questions, and help with difficult jargon—or, as one young person put it, know how to “bark the right way.”

After leaving school, many felt lonely, lost and unsure of their role and identity as adults. Some felt “left out” by non-disabled friends and siblings who had jobs and life partners, intimate relationships and were raising families of their own.

It’s hard to find a partner […] or knowing someone and being with someone.

There was a shared feeling among participants that most disability services did not prioritize activities to support the achievement of their goals. One young woman explained how finding a suitable service was very difficult. She talked about how her first service provider “tried to take us for money” without providing a service.

Other participants felt ‘stuck’ with life in disability services, locked into the role of ‘disabled person’ whilst wanting to do and be more.

you know […] I want to do something more in my life […] I want to be there. You know what I mean?

Participants felt they needed better support in finding and keeping a job, even from contracted agencies. Getting help finding paid work seemed particularly frustrating and out of reach. One young man called it a “complete nightmare”, explaining,

So they’re basically, you know, not very well, um, structured […] you are just waiting here for that lottery ticket to draw your name.

Read more: Young people with disabilities have worse mental health when unemployed – funding needs to tackle barriers to work

The same goals as young people without disabilities

This study shows that transition planning processes remain inconsistent and there is insufficient collaboration between school systems, services for adults with disabilities, and the workforce.

Participants in our study had the same goals as young people without disabilities for meaningful work, independence and social connection – but needed better support to contribute meaningfully to their communities.

Feeling ‘stuck’ from life in disability services or in ‘constant transition’ can be caused by conflicting beliefs and values ​​between service providers and users.

Young people expect to take on adult roles after leaving school. But disability service providers often view these young people simply as recipients of services. Standardized processes and procedures can create “institutionalized identities.”

The highly standardized nature of the NDIS makes it inaccessible to people with intellectual disabilities, so the promise of choice and control in older people’s lives is far from a reality.

Young people with and without disabilities share the same goals when they leave school.

Read more: Australia lags behind when it comes to employing people with disabilities – disability service quotas could be a start

How it should be

Australia needs nationally consistent policies, underpinned by systematic action and oversight, that truly support the transition from school to meaningful adult life for young people with intellectual disabilities.

People with disabilities should be actively involved in the development of transition and service plans, with goals for growth and for moving between or beyond disability services once milestones are reached.

Strategies should include steps to foster a social identity through friendships, casual to permanent employment, intimate relationships, parenting, or caring for others.

Further changes to the NDIS model are also needed to promote individualized and supported planning for people with intellectual disabilities.

Read more: ‘On my worst day…’ How the NDIS promotes deficit thinking and why this needs to change

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