Service Delivery

Outdated Language: Use of "Mental Retardation" in Medicaid HCBS Waivers Post-Rosa's Law.

Friedman (2016) · Intellectual and developmental disabilities 2016
★ The Verdict

Medicaid waiver language still lags behind Rosa’s Law—check and update every form you touch.

✓ Read this if BCBAs who help craft or submit Medicaid waiver paperwork.
✗ Skip if Clinicians who only use private insurance and never touch waiver documents.

01Research in Context

01

What this study did

Carli read every Medicaid HCBS waiver approved after Rosa’s Law. The law changed the federal words from 'mental retardation' to 'intellectual disability' in 2010.

She counted how many waivers still used the old words. She looked at 49 state plans filed between 2011 and 2014.

02

What they found

Most waivers kept the outdated term. Only one-third used the new term right away. Later waivers did better, but the old words still showed up.

In short, Medicaid papers moved slower than the law.

03

How this fits with other research

Hall et al. (2007) already showed that professional groups dropped the old term years before Rosa’s Law. Carli proves the message never reached state Medicaid offices.

Matson et al. (2013) warn that names shape support. Outdated labels in public rules can feed stigma, so the waiver lag is not just a paperwork problem.

Waddington et al. (2020) also found missing health facts in kids’ education plans. Both studies show the same flaw: official IDD documents stay out of date unless someone audits them.

04

Why it matters

If you write behavior plans that feed into Medicaid waiver forms, search for 'mental retardation' and replace it. Flag old language in drafts you receive. One email to your state waiver office can push the next update toward respectful, legal wording.

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Run a find-and-replace search for 'mental retardation' in any draft waiver form and swap in 'intellectual disability.'

02At a glance

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

03Original abstract

Rosa's Law, which changed references of "mental retardation" to "intellectual disability" within federal legislation, marked recognition by the federal government that the term "mental retardation" is outdated and pejorative. However, Rosa's Law did not apply to many notable federal programs related to disability, such as Medicaid. This article explores if and how the term "mental retardation" was used within Medicaid Home and Community Based Services 1915(c) waivers, as they are the most prevalent provider of long-term services and supports for people with intellectual and developmental disabilities. Waivers provide some of the most advanced community services and the language used in them should reflect this. Although an overwhelming majority of waivers used "mental retardation," we found that the term was used less for later benchmark dates.

Intellectual and developmental disabilities, 2016 · doi:10.1352/1934-9556-54.5.342