Mothers and fathers with intellectual and developmental disabilities who use US disability services: prevalence and living arrangements.
Most parents with IDD who receive services don’t live with their kids—plans must protect family living.
01Research in Context
What this study did
Sasson et al. (2022) asked a simple question. How many adults with intellectual or developmental disabilities (IDD) who already get services are also parents?
They pulled a big U.S. disability-services database. They counted who had a child under 18 and where everyone lived.
What they found
Only 3.7 % of adults in IDD services are parents.
Among those parents, fewer than half—44 %—live with their minor child. Most who do live in their own or a family home.
How this fits with other research
Bigby et al. (2009) showed family-support budgets grew fast from 2000-2006, yet Sasson et al. (2022) reveal most parent-users still don’t live with their kids. The cash rose, but co-residence stayed low—services may be missing the real goal.
Laugeson et al. (2014) found most young adults with autism live with parents. That sounds opposite to J et al., but the two groups differ: A et al. looked at youth with autism; J et al. looked at parents who have IDD themselves. Different sides of the same family coin.
Nord et al. (2024) add a twist: parents of kids with ID/ASD who rely on public insurance often quit jobs. Less money and more stress could explain why only 44 % keep their child at home.
Why it matters
If you write plans for adults with IDD, ask one extra question: “Are you a parent?” When the answer is yes, add goals that keep the family under one roof—parenting classes, in-home respite, or flexible funds for rent. A quick checkbox today can stop a foster-care move tomorrow.
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02At a glance
03Original abstract
BACKGROUND: Little information is available on the prevalence of mothers and fathers with intellectual and developmental disabilities among US disability-service users. Child removal is a key issue for these parents. METHODS: We analysed 2018-19 National Core Indicators data from 35 states on US adults with intellectual and developmental disabilities being a parent. For parents of a child under 18, we examined whether the child lived with them. RESULTS: Prevalence of parenthood was 3.7% (6.0% women, 2.1% men). Among parents of a child under 18, 44.0% had their child living with them. Being a mother, being married and living with family were positively associated with child co-residence. Parents with co-resident children mainly lived in their own home (59.7%) or their family's home (32.3%). CONCLUSIONS: Our prevalence estimate suggests a national total of 33 794 US parents who use intellectual and developmental disabilities services. For parents living with their child, a critical task for disability services is to enable parents and children to live in a family setting.
Journal of intellectual disability research : JIDR, 2022 · doi:10.1111/j.1365-2788.2006.00924.x