Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals With Intellectual and Developmental Disabilities.
Parents who attend training and have children with higher support needs are the ones actually completing future plans—so target outreach to the untrained and hesitant.
01Research in Context
What this study did
The team sent a web survey to 388 parents of adults with intellectual or developmental disabilities.
They asked about future planning—wills, trusts, guardianship, housing, and work plans.
Parents also rated seven possible barriers like cost, lack of information, and emotional stress.
What they found
Parents who went to more trainings or support groups were far more likely to have plans in place.
Parents whose children needed more daily help also planned more, not less.
The top roadblocks were not knowing where to start, high costs, and fear of facing the topic.
How this fits with other research
Adams et al. (2024) interviewed adults with IDD and families about decision-making. Their work shows trusted supporters and early practice help people choose later—Meghan’s study adds that parents need training first before they can offer that support.
Mori et al. (2018) found parents of children with greater clinical needs felt worse emotionally. Meghan’s data flips the script: those same parents were actually more likely to plan ahead, suggesting stress can push action when proper guidance is given.
Farajzadeh et al. (2021) saw caregiver burden driving anxiety in Iranian CP parents. Meghan’s U.S. sample shows that active participation in training lowers the helplessness part of burden, pointing to a clear intervention target.
Why it matters
If you serve adults with IDD, start by inviting parents to free workshops or support nights. Track who shows up—those who don’t are your highest-risk families. Offer step-by-step planning packets and bring in a financial planner. One extra meeting can turn worry into action.
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02At a glance
03Original abstract
Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.
Intellectual and developmental disabilities, 2018 · doi:10.1352/1934-9556-56.2.90