Family Voices urges continued $175,000 biennial support for families of children with special healthcare needs

Deneen Feist, director of Family Voices of North Dakota, told the House Appropriations — Human Resources Division that Family Voices provides statewide family-to-family information, peer support and care navigation for families of children with special healthcare needs, medical complexity or disability and requested continued state general‑fund support of the $175,000 biennial allocation that appears in the governor’s budget documents.

Feist described Family Voices as one of three statewide parent organizations that operates a Health Information and Education Center for families, including parent-to-parent matching and a family advisory role for Special Health Services. She said staff are parents with lived experience and that Family Voices fields time-intensive, crisis-level calls supporting families who face denials, eligibility problems and complex waiver and Medicaid navigation.

Feist presented usage data the organization collects: 2,302 first‑time callers and a duplicate‑adjusted total contact count indicating repeated assistance for many families (transcript numbers cited by Feist). She said national prevalence estimates indicate roughly 39,467 children and youth with special healthcare needs in North Dakota and that 78–82% of those children are not functioning in a well‑functioning service system according to Family Voices’ data collection.

Feist told the committee the Special Health Services Division has been a long‑standing partner for newborn screening follow‑up, multidisciplinary clinics and family advisory engagement, and she urged continued funding for Family Voices’ state general‑fund allocation so staff can expand geographic coverage (Feist named gaps in Minot, Devil’s Lake and Wahpeton coverage) and maintain one‑on‑one family support and training.

Committee members asked for clarification about the $175,000 figure and other grants Family Voices uses to operate; Feist said the organization supplements state general funds with federal grants, university project grants and other sources but still needs the state allocation to sustain staffing and statewide services.

Why it matters: Families with children who have complex, chronic or developmental needs rely on care coordination, navigation and peer support to access therapies, waivers and education, and witnesses testified that Family Voices plays a central role in connecting families to state programs and newborn-screen follow-up.

What’s next: Feist asked that the committee retain the $175,000 biennial line in the budget and consider expanding funds to fill geographic staffing gaps.