ND Health Department outlines limits, safeguards and next steps for paid family caregiving in Medicaid waivers

Sarah Acre, Executive Director of the Division of Medical Services at the North Dakota Department of Health and Human Services, told the Senate Human Services Committee that federal rules bar payment to a legally responsible relative for state-plan personal care services and make paid family caregiving available only through Home and Community-Based Services (HCBS) waivers.

Acre said, “This is 42 CFR 440.167, which governs the federal regulations around personal care,” and emphasized that the federal regulation defines a family member who is a “legally responsible relative” as ineligible to provide state-plan personal care. She said, “in order for somebody to ever access paid family caregiving, it has to be through one of our HCBS waivers.”

The department summarized differences across existing waivers and how family-paid caregiving would fit. For medically fragile children the waiver includes a yearly dollar cap — Acre said that cap is $25,300 per individual — and families may spend that amount across services as they choose. By contrast, the Developmental Disabilities waiver currently allows 600 hours of respite per year; the autism waiver allows 40 hours of respite per month. Acre said the medically fragile waiver places no explicit hourly cap but is limited by the dollar cap.

Acre walked the committee through additional federal expectations for paying legally responsible individuals through an HCBS waiver. She said states must specify who qualifies for payment, identify which waiver services will allow payment, and explain how the state will distinguish “extraordinary care” from “ordinary care.” She also described program-integrity safeguards states commonly use: documentation requirements, finer-grained billing units (for example, 15-minute units), and electronic visit verification. “If you didn’t document it, it didn’t happen,” she said when describing recoupments tied to missing documentation.

On implementation, Acre said the department has requested funding in the current biennium to support waiver redesign and to prepare a cross‑disability children’s waiver. She said the department is starting work on a level-of-care assessment redesign and on defining the new waiver’s service array, provider qualifications and outcome measures, and that some funding would go to service infrastructure such as family navigators and case-management supports.

Committee members pressed on program integrity and workforce issues. Senator Hogan asked whether states have seen fraud under paid family-caregiver programs; Acre responded that some states that rapidly expanded family caregiving during the COVID public health emergency later sought to end or narrow those programs because of cost increases and fraud concerns, and that Idaho had recently asked to end its paid family-caregiving supports. Acre said those experiences argue for starting with narrow requirements and safeguards, monitoring outcomes, and expanding services over time if safeguards work.

Acre described the advisory and planning history for a cross‑disability children’s waiver: a 2021 legislative study (Senate Bill 2256), a 2022 Alvarez and Marshall study recommending cross‑disability supports, and a 2023 law (Senate Bill 2276) that established a cross‑disability advisory council that met December 2023–May 2024. She said the council and consultants assembled a menu of design options and prioritized flexibility and avoiding service reductions for children who move into the new waiver.

Acre and committee members agreed to continue technical drafting. Senator Hogan and Acre discussed meeting to refine bill language so pilot-family-caregiving policy aligns with cross‑disability waiver design and federal approval requirements.

Ending: The department said it will continue design work and technical drafting with legislators and advocates; no formal vote or change to statute was taken during the committee session on this topic.