Family Perspectives on the Complexities of Pursuing Integrated Employment for Adults With Intellectual and Developmental Disabilities.
Families see 64 walls between their adult children and real jobs—check all six life domains before you write an employment goal.
01Research in Context
What this study did
Researchers talked to families of adults with intellectual or developmental disabilities.
Parents named every roadblock they hit while trying to find real jobs for their sons and daughters.
The team sorted the answers into six piles: individual, family, school, service system, workplace, and community.
What they found
Families listed 64 different barriers.
Some were small, like a bus schedule that arrives too late.
Others were huge, like day programs that forbid work or agencies that only offer sheltered shops.
How this fits with other research
Kramer et al. (2020) show only 19 % of adults with IDD served by states hold integrated jobs. Frazier et al. (2023) explain why: the 64 barriers families name line up with that low number.
Matson et al. (2009) found transport and low community acceptance block participation. The new study keeps those items and adds 62 more, updating the list for today’s service world.
McQuaid et al. (2024) counted natural supports and found employment is the least helped domain. W et al. give the parent-side story: families want to help but hit school rules, agency limits, and workplace bias.
Why it matters
Stop blaming the client. If an adult with IDD is not working, pull up the six-domain barrier map and check each one. Can the person ride the bus? Does the day program allow work? Is the boss willing to train? Fix the system first, then teach job skills.
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02At a glance
03Original abstract
The road to employment is not often easy for individuals with intellectual and developmental disabilities (IDD). Families know firsthand the complexities and challenges of obtaining employment for their members with extensive support needs. The purpose of this qualitative study was to identify the critical barriers they encounter in this important pursuit. We interviewed 60 parents (and other caregivers) whose family members with intellectual disability and/or autism had sought and/or obtained paid work. The difficulties they described were extensive and multifaceted. Specifically, participants identified 64 different barriers attributed to six primary areas: individuals, families, schools, service systems, workplaces, and communities. Their unique insights amplify the need for new approaches for promoting integrated employment. We offer recommendations for research and practice aimed at better understanding and ameliorating barriers to meaningful work for adults with IDD.
American journal on intellectual and developmental disabilities, 2023 · doi:10.1352/1944-7558-128.3.219