Supporting Change

Navigating the transition from school to adult life for young people with intellectual disability.

More than four million people in Australia have some form of disability, according to the Bureau of Statistics. The unemployment rate for working-age Australians with disabilities (9.4%) is almost twice that of those without (4.9%). For people with intellectual disability, unemployment is almost 4 times higher (18%). (ABS, 2019).

For example, Bridget, who has an intellectual disability, found it very difficult to transition into employment after she left high school. She wanted to get into childcare, but was not able to receive the help she expected to make her ambition come true. “I don’t comprehend properly and I muddle my words,” she explains.

She says she went from one adult disability service to another, until she settled at Alive4Life, a community and disability organisation where she is both a client and an employee. At Alive4Life, she gets help with reading and building her self-confidence.

She also supports others. Bridget is part of a five-member advisory group for a Western Sydney University research study funded by the Endeavour Foundation, all of whom are aged 16–25 years old and have an intellectual disability.

The study aimed to understand how young people with intellectual disability experience the transition from school to adult life.

Need to know

  • Young people with intellectual disability get caught in service gaps during the move from school to adult life.
  • Transition from school guidelines are often not followed.
  • Barriers to meaningful, paid employment persist.
  • Policy needs to address this.

Lise Mogensen, an associate professor in medical education at Western, is the principal investigator of the study. Her team — including community-child-health specialist and Western medical-education Senior Lecturer, Jenny McDonald, and social work expert Professor Gabrielle Drake — interviewed 27 young people with intellectual disability, and 21 parents and carers across NSW, Queensland and Victoria, to understand their experiences before and after the transition from high school.

Mogensen and the team have finalised and submitted their reports from this study for publication. “We found that transition processes are inconsistent, and young people with intellectual disability are still lacking choice and control in future planning and decision making,” she says. “Young people with intellectual disability are at risk of falling through the gaps after leaving school, and for many, paid employment remains a distant dream.”

The Australian Government’s National Disability Insurance Scheme (NDIS) became fully operational in 2020, with the intention of empowering people with disabilities to have choice and control over the support they receive. “But for many young people with an intellectual disability and their families this idea is far from reality,” says Mogensen. “Gaps in systems and services, along with poor cross-sector collaboration, commonly leave many young adults with intellectual disability in a transitional limbo during their thirties, excluding them from leading purposeful lives and contributing meaningfully to their communities.”

Mogensen and her colleagues will provide policy makers with evidence about the gaps that still need to be addressed, and they will also identify the necessary factors for good transition processes following school, to enable young adults with intellectual disability to achieve meaningful participation in disability services, training or employment.

Meet the Academic | Associate Professor Lise Mogensen

Dr Lise Mogensen is an Associate Professor in the School of Medicine. She is an award-winning educator, who specialises in research methodology, and coordinates the applied research programs in the MBBS and MD courses. Lise is an interdisciplinary researcher with a background in Occupational Therapy and a PhD in social justice focusing on disability issues. She has a particular interest in critical disability studies, and has more than 20 years’ experience in working directly with people with disability, personally, clinically and in research. 

Lise specialises in designing/co-designing participatory research methodologies with vulnerable populations, and consults on research methods and ethics locally and internationally. She has developed approaches and methods to include children and young people with autism and developmental disability as active participants in research, which she has implemented in several of her studies on well-being, diagnosis and identity, inclusion, and transition. She is passionate about translating research into policy and practice for vulnerable populations, and publications from her projects have influenced best practice guidelines for specialist health service delivery and inclusive education.

Meet the Academic | Doctor Jenny McDonald

Dr Jenny McDonald is a Senior Lecturer in the Medical Education Unit, School of Medicine and Coordinator of Personal and Professional Development.

She is a specialist in Community Child Health with clinical and research experience in child development and disabilities, Aboriginal child health and the impacts of social disadvantage on child well-being. She worked as a staff specialist at Campbelltown Hospital between 2001 and 2016 and in private consultant paediatric practice between 1993 and 2000.  She was a director on the board of Mater Dei School between 1995 and 2007 and served as chair in the years 2004-7.

Jenny is a joint PhD candidate with Western Sydney and Maastricht University.

Meet the Academic | Professor Gabrielle Drake

Professor Gabrielle Drake is Associate Dean, Engagement in the School of Social Sciences. She is a recognised expert in the areas of social policy, mental health and disability, and homelessness and housing pathways. Gabrielle’s research interests include social work practice in mental health; disability; boarding houses; housing and homelessness pathways; consumer and carer voices in social work education; and inclusive and emancipatory research.

Gabrielle has twenty-five years practice experience spanning a variety of roles and practice settings including community and public sector management, strategic policy and reform, research, teaching in graduate and postgraduate social work programs, direct practice, and oversight.

Meet the Academic | Dr Nicole Sharp

Dr Nicole Sharp is an Adjunct Fellow in the School of Health Sciences and Translational Health Research Institute, and a registered occupational therapist. Nicole’s primary research focuses on exploring the lived experience of people with disability and mental illness through qualitative methodologies, with an emphasis on co-design approaches. Her PhD, awarded in 2019, was a narrative inquiry titled “Making my own path": Journeys of emerging adults with cerebral palsy.

Nicole’s current research interests include experiences of people with disability, families/carers and service providers around the National Disability Insurance Scheme, and industry funded projects exploring the experiences of young people with disability during the transition from school.

Nicole has over seventeen years’ experience in the disability, higher education and research sectors, having worked in service provision, teaching, research specific and strategic roles. Nicole is also Director of Believe and Become Pty Ltd, a private occupational therapy clinic, and sits on Boards and Expert Panels of community services and mental health organisations in South-Western Sydney.

Credit

This research was funded by the Endeavour Foundation Disability Research Fund.

© proksima/iStock / Getty Images Plus
Future-Makers is published for Western Sydney University by Nature Research Custom Media, part of Springer Nature.