Down syndrome advocacy group and providers seek continued waiver work and protections against proposed autism waiver cuts

Roxanne Romanek, representing Designer Jeans of North Dakota (an advocacy group for individuals with Down syndrome and their families), told the committee that the DD waiver, state plan services and recent investments in the cross-disability advisory council are important for families. She thanked legislators for prior work on the council and for funding the Alvarez and Marcel study and asked the legislature to continue support for the council’s work on waiver development.

Romanek said about 600 individuals with Down syndrome live in North Dakota and that many families rely on 1915(c) waiver services and state plan Medicaid to achieve community-based supports. She flagged concern about a proposed $9 million cut to the autism waiver and said cuts could cause families to lose services and, in some cases, state plan Medicaid coverage.

Romanek also described the Children with Disabilities Buy-In program as an existing pathway for some families whose children do not qualify for the waiver but noted it currently serves very few families and is administratively complex; she asked the committee to consider ways to make the buy‑in more accessible.

Ending: Romanek urged continued investment in waiver design and the advisory council, said Designer Jeans and partner organizations will return for the next hearing on developmental disabilities waiver public comment, and asked lawmakers to consider the downstream effects of waiver cuts on families’ access to state plan services.