Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?
Parents of young adults with profound ID face a cliff of lost services—plan for material, informational, and emotional supports before the exit date.
01Research in Context
What this study did
Gauthier-Boudreault et al. (2017) talked with parents of young adults who have profound intellectual disability. They asked what the families still needed after the school-to-adult-life switch.
The team used open interviews. Parents described real-life gaps in housing, day programs, and emotional support.
What they found
Parents said services vanished once the diploma was handed over. They felt lost, not knowing where to turn for help.
Biggest pain points: no suitable housing, long wait lists, and no one to call for clear next steps.
How this fits with other research
Matson et al. (2009) showed that when outside supports are strong, parents feel happier with transition. Camille's 2017 study deepens that point by listing the exact supports that are missing.
Bianco et al. (2009) first mapped the many hats parents wear—advocate, trainer, safety net. Camille adds the price tag: parents burn out because these roles come with no pay, no training, and no respite.
Ooms et al. (2026) asked Dutch health workers what blocks good transition care. Both papers blame poor coordination, but Ilse looks through staff eyes while Camille shows the parent view. Together they prove the problem is systemic, not just one side's fault.
Why it matters
If you write transition plans, list concrete supports—housing contacts, respite vouchers, a 24-hour phone number. Without these extras, families stay stuck and your client risks losing hard-won skills.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a 'family resource checklist' to every transition IEP: housing contacts, respite funds, day-program wait-list forms, and a named point person.
02At a glance
03Original abstract
INTRODUCTION: At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. OBJECTIVE: The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. METHOD: Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. RESULTS: At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. CONCLUSION: By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.05.001