Perception of service needs by parents with intellectual disability, their significant others and their service workers.
Parents with ID say community and social supports are their top unmet need, while workers still rank child-care help first.
01Research in Context
What this study did
Sutphin et al. (1998) asked three groups to rank what parents with intellectual disability need most.
The groups were the parents themselves, their close friends or relatives, and their service workers.
Each person filled out a survey listing possible supports such as child-care help, money aid, or community activities.
What they found
The groups did not agree.
Parents picked community and social supports as their top unmet need.
Workers and relatives put child-care help higher, showing a clear mismatch.
How this fits with other research
Ellingsen et al. (2014) later showed most satisfaction surveys leave out people with lower IQ and skip easy-read aids.
That helps explain why parent voices in Sutphin et al. (1998) were already different from staff views.
Douma et al. (2006) asked parents of youths with ID plus mental health needs and again found most supports, especially counseling, were missing.
The pattern repeats: parents say they need wide life help, yet systems keep offering narrow child-only services.
McConkey et al. (2010) surveyed 245 support staff and found they rank bathing, feeding, and meds far above social outings.
This staff mindset matches the low priority given to community supports seen in Sutphin et al. (1998), so the gap is not new and still persists.
Why it matters
When you write goals or choose training topics, start by asking the parent what would help them join community life.
Add visual aids or simple lists so parents with lower IQ can weigh in.
If the team only talks about parenting skills, pause and add objectives like using the bus, meeting neighbors, or joining a club.
Meeting this parent-ranked need can boost engagement and make other child-care goals easier to reach.
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02At a glance
03Original abstract
It is well recognized in the literature that parents with intellectual disability require support and social services. There is growing interest in these services being responsive to parent-identified concerns, particularly as it has been suggested that parents' concerns may differ from those reported by service workers, family members, or friends. In the Australian study reported here, the views of parents with intellectual disability, their significant others and service workers were sought on parents' service needs on 20 items incorporating child care, social and community living, and domestic skills. There were significant differences in the perceptions of the parents, workers, and significant others on the help parents needed. Several gaps in services were also identified. From the parents' perspective, their greatest unmet needs were in the community participation area, specifically with help to explore work options, to know what community services are available and how to access these, and to meet people and make friends.
Research in developmental disabilities, 1998 · doi:10.1016/s0891-4222(98)00006-7