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Rare disease council urges delay on House Bill 5557, says DSM‑5 definition risks leaving patients without services
Summary
The Rare Disease Advisory Council told state leaders House Bill 5557’s shift to DSM‑5 criteria for intellectual disability risks excluding people with progressive rare genetic disorders and lacks an impact study or funding; the council asked members to write legislators and sought a multisector forum to review emergency protocols.
Leslie Bennett, co‑chair of the Rare Disease Advisory Council, told the council that House Bill 5557, which would change Connecticut’s definition of intellectual disability to align with the DSM‑5, could exclude people with progressive rare genetic disorders and lacks an implementation plan or funding.
"It is changing the state's definition of intellectual disability to the definition used in the DSM‑5," Bennett said. "For us that's not true. Our conditions are degenerative or progressive. So it can tend to miss if the evaluators are not trained in rare disease." She said the Department of…
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