State health care financing strategies for children with intellectual and developmental disabilities.
States have a menu of Medicaid tricks to cut costs for families of kids with IDD, and you can use them today.
01Research in Context
What this study did
The authors talked to state Medicaid staff in all 50 states.
They asked how each state pays for therapy, equipment, and respite for kids with IDD.
They wrote down every tool states use, like Medicaid buy-ins, waiver slots, and special funds.
What they found
States mix and match three big ideas.
Some let families buy into Medicaid even if their income is too high.
Others give flexible cash or pass laws that force insurance to cover more services.
How this fits with other research
Jones et al. (2010) counted dollars and warned that a $7.8 billion stimulus cliff was coming.
Falcomata et al. (2012) answers that warning by listing the exact financing tricks states can use to soften the fall.
Eskow et al. (2015) then tested one of those tricks — a Medicaid waiver for autism — and showed it really does help kids and families.
Dinora et al. (2023) adds a twist: simply pouring in more money does not always help the highest-need kids, so states must also watch how funds are used.
Why it matters
You can hand this list to parents in one page.
When a family hits a funding wall, check if your state offers a buy-in, waiver, or mandated benefit.
If the answer is no, you now have exact language to share with the case manager or legislator.
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02At a glance
03Original abstract
We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were identified through interviews with family advocacy, Title V, and Medicaid organizational representatives. Results showed that states use myriad strategies to pay for care and maximize supports, including benefits counseling, consumer- and family-directed care, flexible funding, mandated benefits, Medicaid buy-in programs, and Tax Equity and Fiscal Responsibility Act of 1982 funding. Although health reform may reduce variation among states, its impact on families of children with intellectual and developmental disabilities is not yet clear. As health reform is implemented, state strategies to ameliorate financial hardship among families of children with intellectual and developmental disabilities show promise for immediate use. However, further analysis and evaluation are required to understand their impact on family and child well-being.
Intellectual and developmental disabilities, 2012 · doi:10.1352/1934-9556-50.3.181