Future care planning of adults with childhood-onset neurodevelopmental disabilities: A scoping review.
Families want to plan but feel stuck; a short, yearly, person-centred meeting can break the logjam.
01Research in Context
What this study did
The team read 42 papers about planning ahead for adults who grew up with autism, intellectual disability, or developmental delay. They asked: what helps and what blocks families when they try to set up future housing, money, and health care?
They charted every barrier and booster they could find. No new data were collected; they simply mapped what is already known.
What they found
Two big walls block planning. First, caregivers feel guilt and fear; they do not trust service systems. Second, agencies offer little time, staff, or clear forms.
Things that help are small and steady: a trusted case worker, a written plan that centers the adult's own goals, and legal advice that families can understand.
How this fits with other research
Williams et al. (2021) looked inside state service plans and saw almost no end-of-life sections. de Leeuw et al. (2024) widen the lens and show the gap starts much earlier: families cannot even begin basic future-care talks.
Krafft et al. (2019) interviewed parents of autistic teens and heard the same guilt and distrust named in the new review. The feelings are not new; they just have not been fixed.
Vassos et al. (2016) found weak but positive evidence that person-centred planning boosts community choice. The new review folds that evidence into one clear tip: start planning conversations early and keep them person-centred.
Why it matters
If you serve adults with IDD, open the future-care talk at intake, not at crisis. Use a one-page template that lists housing, money, health, and fun. Schedule a yearly 30-minute check-in. Small, steady steps beat a big, late scramble.
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02At a glance
03Original abstract
BACKGROUND: Advances in medicine have increased the life expectancy of adults with neurodevelopmental disabilities (ND). These individuals often reside with aging family caregivers, who also experience age-related health issues. However, many caregivers lack future care plans for their adult children. Thus, there is a pressing need for practical solutions for family-centered future care planning (FCP). AIMS: To summarize the literature on the key components of FCP for adults with ND and their familial caregivers. METHODS AND PROCEDURES: This scoping review adhered to the Joanna Briggs Institute guidelines. It utilized search terms related to ND and FCP and conducted searches in four databases. Data were analyzed thematically. OUTCOMES AND RESULTS: The initial search generated over unique 9000 articles. The review identified facilitators, such as preferences, family-centered approaches, advocacy, and formal support, which promote effective FCP. Barriers to FCP included caregiver hesitancy, limited resources, the emotional nature of future care planning. Recommendations for addressing these challenges included policy and practice support, healthcare professional education and training, and the active involvement of clients and caregivers in FCP discussions. CONCLUSIONS AND IMPLICATIONS: This review contributes to the understanding of FCP for adults with ND and offers insights for improving family-centered care planning processes. WHAT THIS PAPER ADDS?: This paper contributes to the literature by highlighting the pressing need for comprehensive future care planning (FCP) for adults with neurodevelopmental disabilities (ND) and their aging caregivers. With increasing life expectancy for adults with ND, there is a growing population of aging caregivers who often lack proactive FCP. The review identifies common FCP facilitators, barriers, and recommendations, emphasizing the emotional and financial challenges caregivers face. On the macro level, distrust of the public sector, a crisis-driven healthcare system, and a lack of funding and information present significant challenges. On the micro level, emotional attachment to adult children with ND can lead to family instabilities, uncertainties about the "right decision," and feelings of helplessness and guilt among caregivers. It underscores the importance of taking a family-centered approach, involving the adult with ND, and providing healthcare professionals with the necessary education and support to guide caregivers through the FCP process. The paper also highlights the limited existing interventions and calls for further research to address this critical issue. By reviewing a broad range of studies, the paper sets the stage for future research and practice in this area. It offers valuable insights into the components of FCP that can inform recommendations for healthcare professionals, caregivers, and individuals with ND to enhance the continuity of care. In doing so, it aims to address the gaps in the existing literature, particularly the lack of caregiver-informed recommendations for comprehensive FCP.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104843