Va. families seek state funding for medical supplies

Budget amendment would assist with home care for children with disabilities

Parents of disabled children are asking the government to help them afford specialized formula.

Finn McGrath was injured while being born back in 2009, which led to a brain injury and cerebral palsy.

“I think people don’t understand that kids with significant disabilities are on these waivers because primary insurance typically does not cover the needs of these children,” said his mother, Laura McGrath of Richmond.

A budget amendment proposed in both the House and the Senate would allocate $21 million starting in fiscal year 2024 to the Virginia Department of Medical Assistance Services to fully reimburse families for the medical equipment needed for their children such as Finn McGrath.

The budget amendments were introduced by Del. Emily Brewer, a Republican who represents Suffolk and Western Tidewater north to outside Petersburg and Hopewell, and Sen. Siobhan Dunnavant, R-Richmond.

“Families have not been able to get coverage of items that are necessary to care for their children in the home,” Dunnavant said in an emailed statement. “Virginia has made a commitment that the home is the best, most enriching place for children with these extraordinary needs and now we need to be sure they can get the tools they need for care so they can stay at home.”

Families such as the McGrath’s are basically trained to run an intensive care unit out of their home, according to Michael O’Brien, a respiratory therapist and pediatric home ventilator program coordinator for the University of Virginia Children’s Hospital. He said there are many difficulties parents of these medically fragile children face, such as the complexity of care which exacerbates the already present issue of a medical staff shortage.

“It’s harder for families to deliver the care in the way they were taught because they don’t have the supplies that they need,” he said.

The supply chain tangle caused by the pandemic has also reverberated into these homes, as needed materials need to be used for longer periods of time then intended, according to O’Brien. This in turn also makes these materials not just more expensive for families but also for the durable medial equipment companies are providing these items at a loss because their reimbursements haven’t changed either, he said.

“Before the pandemic, you might be able to go online and find some [airway tubes] through an online merchant for $50, but now, depending on the size of the tracheostomy, it’ll be several hundred dollars,” O’Brien said.

This presents a problem in ensuring these medically fragile children are able to stay at home and be healthy as families try to stretch their treatments as their budgets tighten the same way that those with expensive medication may not take it every day as prescribed so they have to buy the medication from the pharmacy less, according to O’Brien.

However, providers prescribe treatments as they do in order to keep people healthy and in outpatient care.

For example, the formulas are specialized for the children with these specific conditions and are important part of keeping them healthy, according to pediatric medical experts at the Children’s Hospital of The King’s Daughters and University of Virginia Medical Center.

“When insurance doesn’t cover these things to a fair amount, the families are left having to pay that difference and that’s going to add up because these are not disorders that go away with time,” Eileen Coffman, metabolic dietitian with CHKD’s Division of Medical Genetics.

The formulas also help prevent complications from surgeries, according to Michele Spurlock, Pediatric Dietitian with CHKD’s Pediatric Intensive Care Unit.

“We should treat formula as a medicine because that’s what it is,” she said.