Service Delivery

Mothers and fathers with intellectual and developmental disabilities who use US disability services: prevalence and living arrangements.

Stancliffe et al. (2022) · Journal of intellectual disability research : JIDR 2022
★ The Verdict

Most parents with IDD who receive services don’t live with their kids—plans must protect family living.

✓ Read this if BCBAs serving adults with IDD in Medicaid waiver or state-funded programs.
✗ Skip if Clinicians who only work with typically developing children.

01Research in Context

01

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.

02

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.

03

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.

04

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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Add ‘parent of minor child’ to your intake form and flag those cases for family-preservation supports.

02At a glance

Intervention
not applicable
Design
survey
Population
intellectual disability, developmental delay
Finding
not reported

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