Op-Ed: Virginia at crossroads in delivering critical care to medically fragile children

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Co-Authored By:
Laura McGrath, Esq., Parent/Founder, Our Special Lives
Melinda Phillips, CEO/President, Thrive Skilled Pediatric Care

Virginia healthcare providers are well known for delivering exceptional care from its beaches to its mountains, but the most vulnerable children in Virginia may lose access to a critical component of their care.  Many medically fragile children are at risk of losing access to vital life-sustaining medical supplies and services in the Commonwealth.

Children with feeding tubes, ventilators and other significant health needs are dependent on the few pediatric medical supply companies in Virginia to deliver life sustaining equipment, supplies and medical food.  However, in the face of rising costs for transportation, labor, shipping, as well as price hikes from manufacturers, these home medical equipment (HME) providers have met a concurrent decrease in Medicaid reimbursement rates, which is an insurance reimbursement that almost all medically fragile children are dependent upon. Unfortunately, current Virginia Medicaid reimbursement rates are lower than the national Medicaid average. In one example, Virginia’s Medicaid reimbursement rates for medically prescribed infant formula ranges from 29% to 88% below the national reimbursement rate. In other cases, reimbursement rates do not even cover the purchase price of items which doctors prescribe for these pediatric patients with significant needs.  Importantly, such rates also do not include freight expenses or the supply company’s operating cost to process the orders, train families how to use the equipment and supplies, or servicing of the life-sustaining equipment, such as ventilators. The Virginia Assembly convened in January for the 2023 session and is reviewing amendments to the biennial budget. Under consideration is an amendment requesting the Department of Medical Assistance Services (DMAS) to increase reimbursement rates for HME products, including feeding tube-related products and supplies. The passing of this amendment would once again allow access to medical food, supplies and equipment for these medically fragile children.

Virginia has lost about 40% of such medical suppliers since 2013, thanks to drastic cuts over the last decade. Currently, Virginia only has one dedicated pediatric supply company, Thrive Skilled Pediatric Care. As a result, neonatal and pediatric intensive care units are struggling to discharge their ventilator, tracheostomy, and medical formula-dependent patients because of the lack of pediatric supply companies which can serve these patients.

Kirk Petrie founded Tender Hearts Home Health Care in 2005 to provide ventilators, oxygen, and other respiratory supplies to children in the Piedmont region. In 2009, he discovered that the Medicaid reimbursements were not on the same pace as the cost to purchase critical care items. Due to the gap, Kirk had to close Tender Hearts in December 2021.

Michael O’Brien, Respiratory Therapist and Pediatric Home Ventilator Program Coordinator, at UVA Children’s Hospital, notes the challenges facing clinicians as skilled providers no longer serve pediatric patients: “Transitioning our most medically fragile ventilator patients to their homes is now a real problem for us. Increased costs and low reimbursement are knocking companies out of the market, so in many cases, we have no HME provider to care for our families, especially in rural areas.”

As a result, many pediatric patients transitioning out of extended hospital stays must be placed in a skilled nursing facility (SNF) or medical foster care due to a lack of medical supply companies that service the area where they reside.

Laura McGrath, whose child has received supply and equipment services for the past twelve years, is aware of parents like her using unorthodox methods to access supplies to take care of their children. Parents will trade supplies or buy from uncontrolled online sources.  Sometimes parents must use desperate solutions, such as making their own formula with condensed milk, instead of the formula prescribed by their pediatrician. Ms. McGrath feels that the state must, “allocate sufficient funds through this amendment to fund medically necessary treatment for Virginia’s most vulnerable population of children.  Not only is access to care under Medicaid legally mandated, but it is the most humane choice that our elected officials can make for these children.”

The Assembly can take a critical step forward by including in the budget an amendment that updates HME reimbursement to align with the current market environment.  We need to strengthen our ability to deliver care to many thousands of children in Virginia. Investing in homecare lowers overall Medicaid spending, reduces the strain on hospitals and nursing facilities, and improves patient outcomes. Children and their caregivers in Virginia shouldn’t have to wait any longer to receive this life-sustaining funding.


Jan 24, 2023


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