Parents, advocates tell Beaver County commissioners families need more nursing support as Rare Disease Day is proclaimed

Beaver County residents and advocacy groups urged the Board of Commissioners to address shortages in home nursing and other supports for families of children with rare conditions during public comment at a February meeting.

"Hi. I'm Beth, Jabragovsky," said a parent who introduced herself as the mother of twin boys with a rare neurodevelopmental duplication syndrome, describing complex care needs including feeding tubes and seizures and saying specialists at a children's hospital help manage their care. "We have over 20 specialists for each boys that we see," she said, describing frequent therapy and specialist visits.

Peggy Boss, who said she works for Citizen Care, told commissioners that families sometimes return from hospital stays without adequate nursing coverage. "We really do need you guys to support us in helping these families have nurses," Boss said, adding that some families must provide round-the-clock care when agencies cannot staff shifts.

The public comments came after the board read a proclamation recognizing Feb. 28, 2026, as Rare Disease Day in Beaver County. The proclamation cited national advocacy efforts and noted that many rare conditions lack FDA-approved treatments.

Board members responded by thanking commenters and noting ongoing local efforts to promote health-care careers; speakers referenced nursing programs and college-based workforce development as part of longer-term solutions. Commissioners did not record new directives in the meeting minutes to fund or expand nursing programs during the session.

The meeting record does not specify immediate budgetary commitments or an implementation timeline for increased home nursing services. Advocates asked the board to consider additional supports; county staff and commissioners noted appreciation for the advocates and described the county as supportive of local healthcare initiatives.

Next procedural steps listed on the meeting agenda included routine approvals and a review of several resolutions; no formal motion to create a new nursing program or to allocate new funds for home nursing was recorded during the public-comment portion of the meeting.