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Families and advocates urge continuation and refinement of paid family‑caregiver pilot
Summary
Senate Bill 2305 would continue and refine North Dakota’s paid family caregiver pilot. Families and disability advocates lauded the pilot but asked for changes to assessment tools and parity of pay across age groups; the Department of Health and Human Services described rollout data and waitlist numbers.
Senate Bill 2305 drew extended public testimony from family caregivers, advocacy groups and the Department of Health and Human Services about the state's paid family caregiver pilot. Supporters asked the Legislature to continue funding the pilot and to revise assessment and payment rules before folding the service into Medicaid waivers.
Sen. Kathy Hogan, sponsor: “The family paid caregiver was designed to try and address some of those issues… This bill was introduced at the request of a group of families who had advocated for the family caregiver program 2 years ago and wanted it to be reviewed and continued.”
Tina Bate, director of the Developmental Disability Section at the Department of Health and Human Services, delivered neutral testimony and presented program data. The pilot began April 1; by early December the department had received 444 applications, approved 50, had 17 pending and 182 on a wait list. Bate said the program used a self‑assessment tool developed after a national scan found no existing evidence‑based instrument for “extraordinary care.” She described design choices made to keep the application simple but warned that self‑assessment can create risks of under‑ or over‑statement and that the review process has generated appeals that hold funds in reserve.
Tina Bate, Department of Health and Human Services: “The pilot started on April 1st, and within 15 minutes, I think we had over 200 applications … As of [the data], we have 444 applications submitted. We approved the approved applications, we have 50. We have 17 pending applications. … We have a 182 on the wait list.”
Family members and disability advocates testified that the department’s assessment does not adequately reflect age‑appropriate measures of extraordinary care for young children and that pay for caregivers of children was lower in the pilot than for adults. Multiple parents asked that payment parity be set at rates comparable to self‑directed direct‑support professionals and that the assessment focus on functional care needs (for toileting, feeding, medication management) rather than skills unrelated to daily care.
Advocates also urged that the Cross Disability Advisory Council (CDAC) remain involved in developing assessment tools and advised careful alignment with Medicaid rules if the service converts from state funds to waiver funding.
Committee members asked the department for data on denials and reasons for denial; Ms. Bate said the primary reason for denial (97 cases) was that the assessment did not meet the extraordinary‑care criteria and 62 applicants were not enrolled in a qualifying waiver. The committee did not take a final vote during the hearing.
Why it matters: Supporters said the option allows families to retain care at home when workforce shortages make hiring external direct‑support staff difficult. Opponents were not recorded in the hearing; the committee requested fiscal and program data to guide potential amendments.
