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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 Social Services has not provided an impact study and that the rare‑disease community was not included in drafting the change.
Bennett said the DSM‑5 approach de‑emphasizes IQ testing and replaces a single cutoff with a broader range, but that clinical experts at academic centers have told the council the DSM‑5 framework can be problematic for patients with progressive metabolic and genetic disorders. "It can miss the degradation or decline in intellectual disability," she said, arguing that children who may not survive to school age could be disadvantaged by evaluators unfamiliar with rare disease presentations.
Colleen Brunetti, who represents adults living with rare disease, urged careful scrutiny of the bill’s effects and said the council supports expanding services generally but opposes a rushed change without stakeholder input and funding. Bennett asked members to write to legislative leaders, including Sen. Looney and Reps. Ritter and Candalora, and to support the Department of Social Services in convening a forum so stakeholders can review impacts and options.
Council members described families' urgent concerns. Bennett said she spent a full day at the statehouse testifying and that parents of children with progressive disorders are "in a panic" about potential changes. The council emphasized it is seeking a delayed timetable to allow an impact study and collaborative rulemaking that includes rare disease clinicians and advocates.
The council did not take a formal vote on legislative action at the meeting. Next steps identified at the meeting were encouraging members to send letters to legislative leaders and working with the Department of Social Services and the Connecticut Hospital Association to convene a forum on emergency protocols and eligibility implications.
