Committee hears extension for paid family caregiver pilot while state designs cross‑disability waiver

Senate Bill 2305, which would extend the paid family caregiver pilot program and provide an appropriation while the state develops a cross‑disability Medicaid waiver, was heard by the House Human Services Committee. Senator Kathy Hogan, prime sponsor and advocate for the pilot, and multiple families, providers, and advocates testified in support of continuing the pilot until the cross‑disability waiver becomes operational.

Proponents said the pilot fills a gap created by workforce shortages and helps keep medically complex children and adults in family homes rather than in institutional settings. Supporters asked the committee to maintain and extend the pilot while DHHS completes planning and federal approvals for the cross‑disability waiver.

Senator Kathy Hogan summarized the pilot’s background, noting the program began in April 2024 and received 444 applications; 50 applicants had been determined eligible and an 82‑child waiting list remained, according to documents she provided to the committee. Hogan told members the pilot was funded with state dollars and was not included in the governor’s budget; an advisory group of DHHS staff, advocates and family members reviewed program data and initially recommended $9 million to continue services. Hogan said the Appropriations Committee ultimately included $7 million to continue services for people on the waiting list.

Multiple family members testified about how paid family caregiving enabled them to maintain care at home when in‑home services were unavailable or inconsistent. Roxanne Romanek of Designer Genes of North Dakota said these are not new Medicaid enrollees but individuals already authorized for waiver services; the pilot helps deliver the services when provider shortages prevent outside caregivers from showing up. Parents described extensive, specialized caregiving tasks that go beyond typical parenting: feeding through gastrostomy tubes, administering multiple daily medications, monitoring for aspiration or seizures, and managing complex medical equipment.

Families and provider representatives described implementation challenges and areas for improvement. Speakers asked for continued evaluation of the pilot’s eligibility assessment tool, particularly for children under age 8 whose developmental norms can mask extraordinary care needs; Designer Genes and others urged that the Cross Disability Advisory Council help refine assessment language so young children with medically complex needs are not excluded. Testimony also noted the pilot required some applicants to “spend down” and that several denials were attributable to how rules were written rather than to absence of need.

Senator Sean Cleary, who sponsored the pilot in the Senate, said the Senate amendment reduced the fiscal exposure by limiting the biennial fiscal note to those already on the waiting list. He and others urged the committee to support a “do pass” recommendation so the department can maintain services while it moves the program into the cross‑disability waiver, which will require federal approval and is planned to start at the beginning of the next biennium.

Committee members asked about evaluation and fiscal oversight. Hogan said the pilot had no formal, long‑term external evaluation because it had been operational only a short time, but that the advisory group reviewed available data, appeals, and program feedback to recommend continuation options. Committee members also asked whether the cross‑disability waiver would carry a federal match; Hogan and multiple witnesses said the goal is to move services into the cross‑disability waiver to access federal funding in the future.

No formal committee vote was taken at the hearing; the clerk read the bill title, the committee heard a substantial block of supportive testimony from families and advocacy groups, and the committee closed the hearing after questions and statements from members.