Children's First In Nation to Seek Medicaid Waiver For Hospice Services

from The Children's Hospital (TCH) News, December 2005

The Children’s Hospital is the first pediatric institution in the nation to pursue a Medicaid waiver that would allow supportive-care services for children with life-threatening illnesses. Currently, Medicaid does not cover services such as bereavement counseling and emotional support for a child who is dying or his or her parents, said Children’s oncologist Brian Greffe, MD.

Children’s Butterfly Program provides supportive-care services such as counseling for a child who is dying, but those services are not covered by Medicaid. Children’s must write them off as a deficit.

“When a child is dying, parents have a hard time letting go,” Dr. Greffe said. “With this waiver, they will be able to access emotional support services for themselves. It’s very encompassing.”

In addition, Dr. Greffe said, many children who are dying have complex medical issues and need a great deal of care. Their parents sometimes need a break, but Medicaid may not pay for a health aide to come to their home for a couple of days. So often-times, the parents admit the child to the hospital for a week or two, which is extremely expensive. The waiver would cover the cost of a home health aide.

In addition, Dr. Greffe said, the waiver would enable Children’s health-care team to manage the child’s medical and emotional needs from the time of diagnosis of a life-threatening illness.“Families could call upon these individuals at any time,” Dr. Greffe said. “For example,a nurse could troubleshoot early on when a child has a problem.”The advantage of that, he said, is that now parents often end up taking their child to the Emergency Department when there’s a problem, which is another major expense to the system.

Dr. Greffe estimates that with the waiver, Medicaid could potentially save $15,000 to $20,000 per child.“The waiver should decrease hospital stays and could avoid unnecessary ER visits and admits,” he said.

Children’s began working on the waiver four years ago after receiving a grant from Children’s Hospice International. Six states received the grant: Florida , Kentucky , Virginia , New York , Utah and Colorado . States that received the money had to agree to work with their state’s Medicaid agency to submit a federal waiver.But Children’s began making real progress on the waiver 2? years ago, Dr. Greffe said, when he was paired with the head of Colorado Medicaid at Children’s 101. She backed the legislation – that Medicaid had the authority to work on a waiver to broaden palliative and hospice services – and it passed in the Senate 99-1 in 2004.

For the next step, Dr. Greffe said, Children’s met with focus groups of doctors, nurses, parents and directors of hospice groups to seek input. All of the focus groups agreed that they wanted families to be able to access support services.
The waiver is now going through final review at the state Medicaid office; Dr. Greffe said he hopes to submit the waiver to Centers for Medicare and Medicaid Services (CMS) in the next few weeks. The CMS then has 90 days to review the waiver.If the waiver passes, Medicaid will cover supportive care services for 200 patients initially; however, Dr. Greffe said, more than 4,000 children in Colorado could potentially benefit from such a waiver. The waiver also would cover the cost of care for children and families who wanted to go to hospices close to their homes.

"Having such a Medicaid waiver in place in Colorado is a pioneer-ing effort,” said Dr. Greffe, who spoke about the waiver in Washington on Dec. 8. “It will truly allow a much broader range of services for children with life-threatening illnesses and their families. In addition, there will be substantial cost savings to Medicaid, so everyone benefits.”