Systemic Barriers and Emotional Complexities in the Transition to Adulthood: The Lived Experience of Parents of Individuals With Intellectual Disabilities in Italy.
Mariachiara Feresin, Elena Bortolotti
PMID 42598917WHAT IT FOUND
Seventeen Italian parents of adults with intellectual disabilities describe a 'total void' after school ends: no clear employment path, fragmented services, and they must coordinate everything alone.
The emotional toll (exhaustion, frustration, powerlessness) runs alongside pride and determination.
Key findings
01Parents report a 'total void' of structured pathways after compulsory schooling, with vocational training and internships that are intermittent and abruptly disrupted, leaving no viable options in the immediate post-school phase.
02Individualized 'life project' plans are frequently perceived as inadequate, standardized rather than tailored, and not followed through in practice, leaving families feeling the plans are 'just a piece of paper.'
03Parents describe a complex emotional landscape in which resilience, pride, and enduring hope coexist with persistent anxiety, frustration with the service system, and a deep sense of powerlessness, particularly around their own aging and future caregiving capacity.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Only 17 participants, 16 of whom were mothers; fathers' and non-maternal caregivers' perspectives are essentially absent. Single site (Trieste, Italy); the authors state the findings are not generalizable but may be transferable to similar contexts. The findings reflect a 'pre-implementation landscape' — parents' experiences largely predate the formal rollout of Italy's Life Project (Legislative Decree 62/2024), so the paper does not evaluate whether the new framework addresses the gaps described. The research team includes a full professor and a postdoctoral fellow in special education, which the authors acknowledge may have shaped sensitivity to themes of inclusion and systemic barriers. All 17 individuals with ID required at least minimal assistance; the experience of those with milder support needs is not represented.
Declared interests
The authors declare no conflicts of interest and report no funding.
The easy way to misread this
Do not read the parents' descriptions of a 'total void' and fragmented services as a verdict on Italy's new Life Project (Legislative Decree 62/2024). The authors explicitly state that the narratives largely predate the formal implementation of that framework and should be understood as the 'pre-implementation landscape' into which the LP is being introduced, not as an evaluation of it. Additionally, with 16 of 17 participants being mothers, the findings reflect predominantly maternal caregiving experience and should not be read as representing all family members' perspectives.