Families and agencies tell committee private duty nursing shortages leave parents unpaid; Massachusetts and Montana models presented

Olympia — Lawmakers spent the latter portion of the House Healthcare and Wellness Committee's Feb. 4 meeting on private duty nursing (PDN) in the Medically Intensive Children's Program (MICP), hearing agency briefings, family testimony and out-of-state policy models.

The Health Care Authority's Heather Zager described MICP as a Medicaid benefit for children with complex medical needs and explained that services come through managed care organizations and a fee-for-service route administered by DSHS. She said HCA oversees funding, authorizations and policy oversight and that MCOs perform prior-authorizations and clinical reviews. Zager told the committee PDN authorizations are approved for a minimum of 4 hours and a maximum of 6 hours per day, and that claims paid rose notably between 2022 and 2024, with some increase tied to exceptional-hour contracts and rates.

Bea Rector of DSHS' Home and Community Living clarified program structure: two separate PDN programs exist (children's and adult), children's appropriations are split across agencies, and current state policy generally does not permit parents of minor children to be paid for personal care services. Rector said roughly 36 children are authorized by DDCS for PDN and about 234 are authorized through MCOs — about 270 children in total — and that, in practice, fewer of the authorized hours are actually provided.

Families and providers described the effects of staffing shortfalls. Leslie Hubbard, clinical director at MGA Home Care, testified that consistent staffing is difficult because these children require specialized training and orientation, so parents often become the unpaid default fill-in. "Private duty nursing is a critical lifeline that allows these children to live safely at home rather than hospitals or institutions," Hubbard said.

Jamie Thompson, a mother of a child on MICP, recounted long-term unmet needs: her son is ventilator- and tracheostomy-dependent and has been authorized for 16 hours a day of PDN but, she said, "We have not been able to use any hours since November 2018." Thompson urged lawmakers to consider a complex care assistant model so trained family members could be paid and supervised, allowing families breathing room and financial stability.

Two state models were discussed as possible reference points. Denise Brunett of Montana described House Bill 449 (2023), which created a Pediatric Complex Care Assistant (PCCA) service to compensate family caregivers for specialized care without supplanting existing PDN or other state programs; Brunett detailed allowable tasks and ordering/physician oversight. Annie Kausarnowski of Massachusetts described the Complex Care Assistant service launched in 2023 (MassHealth), which uses 15-minute billing units (the standard rate in the presentation was $11.25 per 15-minute unit, or $45/hour) and requires a 65% wage pass-through to employee wages (about $29.25/hour under that model), training and supervisory requirements, and has seen enrollment growth.

What lawmakers asked for: Members requested state-specific fill-rate data and asked agencies to follow up with more precise counts of authorized versus provided hours. Ranking Member Schmick asked how many people qualify for hours but do not receive them; DSHS said it would follow up and provide committee-wide data.

What's next: The work session closed without committee action on PDN; agencies offered to provide follow-up data. The committee adjourned after the presentations.

(Reporting based on committee presentations, family testimony, and out-of-state program descriptions.)