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RDAC members warn House Bill 5557 could narrow eligibility if DSM definition is codified
Summary
At a regularly scheduled RDAC meeting, co-chair Leslie Bennett and other members urged colleagues to oppose language in House Bill 5557 that would codify the American Psychiatric Association’s DSM definition of intellectual disability into state law, saying it could narrow eligibility for services and urged members to join a human services committee meeting.
Leslie Bennett, RDAC co-chair and patient advocate, told the Rare Disease Advisory Council that House Bill 5557 would "codify the American Psychiatric Association's definition of intellectual disability as the state statutory definition," a move she said council members fear would narrow eligibility for state services. She urged members to attend a human services committee meeting and to submit comments, saying the change "could affect eligibility for a lot of children with progressive rare disorders."
Bennett said advocates worry the DSM approach is more rigid than current state practice and noted an historical IQ threshold that has been used by courts and agencies: "the IQ cutoff of 69" that previously shaped eligibility decisions. She framed the bill in the context of an ongoing lawsuit by a constituent identified in the transcript as Catherine Mayo, whose case illustrates the stakes for people whose measured IQs hover around eligibility thresholds. "There's a lawsuit out right now by... Catherine Mayo," Bennett said, and council members said adoption of a narrow statutory definition could make similar families lose access to services.
Council members also discussed process concerns: the Connecticut Hospital Association has proposed limiting the RDAC’s role on emergency-protocol discussions to a six-member subset (a separate procedural item discussed at the meeting). Members said they would seek volunteers for that group but also planned outreach to other RDAC clinicians and executive team members to ensure patient representation.
At the meeting, speakers noted that DSM revisions are in flux: participants referenced that the DSM-5 has been revised in the past and that a future DSM-6 (including a digital format) is anticipated. "The DSM-6 will be coming out... it'll be digital only," one member said, warning that codifying a currently published DSM version into statute could lock a moving clinical standard into law without legislative oversight.
What happens next: RDAC members asked colleagues to join an upcoming human services committee meeting and to circulate comments. The council did not vote on legislation at this meeting; members said they would coordinate attendance and written input prior to the committee hearing.
