Informing and Equipping Parents of People With Intellectual and Developmental Disabilities.
Parents of people with IDD miss most available supports, so ask first and share in the format each family prefers.
01Research in Context
What this study did
Carson et al. (2017) ran a large survey of Tennessee parents who have a son or daughter with intellectual or developmental disabilities. They asked how well parents knew about supports like respite, behavior services, or transition help. They also asked parents how they prefer to hear about new resources.
The team then split answers by child age, diagnosis group, and family income to see which parents miss out most.
What they found
Most parents said they do not know what help is available. Families with younger kids, lower incomes, or certain diagnoses were the least familiar. Parents also wanted different ways to learn: some like Facebook, others want printed lists, and some trust word-of-mouth from other parents.
No single outreach method reached everyone.
How this fits with other research
Almalki et al. (2021) asked Saudi special-ed teachers why parents rarely join transition meetings. Teachers blamed schools for not inviting or explaining. The two studies seem opposite but both point to the same hole: systems fail to reach parents.
Aleman-Tovar et al. (2022) later showed Latinx families want live or online talks, not paper brochures. Their finding backs B et al.'s call to match the messenger to the family.
Wu et al. (2024) found parents of youth with IDD expect less from adult life. Low expectations line up with low resource knowledge: you cannot aim for what you do not know exists.
Why it matters
Before you write a parent training plan, check what they already know. A quick 3-question survey at intake can flag gaps. Then offer the info in the parent's preferred format: short video, color flyer, or parent WhatsApp group. Tailoring takes five extra minutes but can save months of 'non-compliance' caused by simple unawareness.
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Join Free →Add three intake questions: 'What help do you already know about?', 'How do you like to get new info?', 'Any topics you feel lost on?' Then give the first resource in their chosen format before leaving.
02At a glance
03Original abstract
The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well-established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer to access resources. Our study examined the resource needs of 1,738 parents of children and adults with IDD in the state of Tennessee. Most parents reported limited familiarity with programs across every domain (e.g., residential, vocational, postsecondary). The extent to which parents indicated various types of information would be helpful varied by demographic factors (e.g., daughter or son's age, disability diagnosis, socioeconomic status), as did the avenues through which they indicated they were most likely to access information and resources. We offer recommendations aimed at equipping parents with relevant supports and resources to guide their son or daughter's journey across the lifespan.
Intellectual and developmental disabilities, 2017 · doi:10.1352/1934-9556-55.5.347