Children’s Wins Battle for Medicaid Waiver

After years of aggressively pursuing a Medicaid waiver covering palliative and hospice services for children with life-threatening illnesses, the Department of Health Care Policy and Financing with the support of The Butterfly Program recently received approval.

Currently, Medicaid does not cover services, including bereavement counseling and emotional support for a child with a life-limiting illness or his or her parents. Children’s and Centura Health at Home, a partner in The Butterfly Program writes the services off as a deficit at the present time.

In addition, Medicaid does not cover the cost of assigning a health aide to the child’s home for a couple of days to allow caregivers a respite. As a result, parents often would admit the child to the hospital for a week or two, which is extremely expensive. Respite care will now be allowable under this new waiver.

“In helping to decrease hospital stays, and avoid unnecessary emergency visits and admits, the waiver provides substantial cost savings to Medicaid, so everyone benefits,” explained Children’s oncologist Brian Greffe, MD, medical director of The Butterfly Program, which provides supportive-care services such as pain and symptom management, emotional support and end-of-life counseling.

When the waiver becomes effective July 1, Medicaid will cover supportive-care services for 200 Children’s patients initially. However, more than 4,000 children throughout Colorado could potentially benefit, according to Dr. Greffe.

The waiver also would cover the cost of care and emotional support for eligible children and families who wish to obtain these services closer to home. In addition, the waiver enables the Children’s healthcare team or other healthcare team to manage the child’s medical and emotional needs from the time of diagnosis of a life-threatening illness.

Children’s began pushing for approval five years ago after receiving a grant from Children’s Hospice International, which charged Colorado and five other states with working with their state’s Medicaid agency to submit a federal waiver.

“Children’s has been a catalyst in getting the ball rolling,” Dr. Greffe said. “It’s nice to see our vision come to fruition. I am ecstatic over what this waiver will mean and bring to these families.”

At Children’s 101, an event designed to bring community leaders into the hospital and acquaint them with Children’s mission and environment, Dr. Greffe met Karen Reinertson, then the head of the Department of Health Care Policy and Financing. Together, they backed the concept and subsequent legislation required to write the waiver.

"It was very exciting to see such a tangible benefit of Children's 101,” explained Maren Stewart, JD, APR , vice president, External Affairs.  “Bringing opinion leaders into Children’s and allowing them to experience the compelling work we do has it rewards. Creating the opportunity to connect, as Dr. Greffe and Karen Reinertson did that day, is one of the key goals of Children's 101, and it certainly will have lasting and positive impact on so many of our patient families.”

Once implemented, Medicaid will review the waiver’s progress and results once a year, and the waiver may be renewed every three years.