The state Department of Health and Social Services has released a planfor managing the healthcare needs of children with medical complexity.
Children considered medically complex often have multiple, interacting, serious diagnoses which require a unique care plan.
As Lisa Zimmerman of the Department of Health and Social Services puts it, “Not a cookie cutter.”
A committee to address this growing population of kids was mandated in this year’s state budget. The group of parents, health care providers and payers began meeting with DHSS officials last fall, and produced the plan released this week.
Committee member Olga Zapata’s son has severe respiratory, neurological and digestive issues stemming from a rare genetic mutation, and requires around-the-clock care.
One of Zapata’s biggest challenges has been getting him enough in-home nursing, either because Medicaid has denied coverage for the hours requested, or, she says, because of a shortage of RNs qualified to perform her son’s daily procedures.
“My husband and I, we’re the ones who have to administer medications and administer the nutrition. I cannot be anywhere too far away basically away from the home,” she said. “I became a prisoner in the house.”
Zapata says that when her son is having seizures or respiratory emergencies, medical professionals often look to her to make decisions about whether and how they should intervene. She's constantly aware that every decision she makes could mean life or death for her child, and says this pressure is emotionally and physically exhausting.
Steve Groff, director of the state Division of Medicaid and Medical Assistance at DHSS, led the steering committee, and says the plan recommends that the division gather more data on the local healthcare workforce, to determine whether there really is a shortage.
He says stories that surfaced during committee meetings of parents appealing Medicaid’s denials of coverage for services their children consistently need made an impact.
“We are completely reviewing our prior authorization and hearing and appeal policies,” he said.
According to Groff, the division also plans to improve written materials to educate family members about the services available to them.
Groff says the division has already made changes to address an issue brought up by a parent in the steering committee—family members will now be eligible for mileage reimbursement when transporting a Medicaid member to an appointment, just like non-family members have been.
The plan recommends that medical necessity documentation be standardized, that wait times for specialists in Kent and Sussex counties be reduced and that the way home health nursing agencies assign nurses to cover care shifts be made more flexible.
It also recommends the steering committee be kept in place so that more research can be done.
Olga Zapata got involved with the steering committee through Delaware Family Voices. She says that being active in the community of families of children with medical complexity has been healing.
"We just need that reassurance that someone will be there to help us with our child. That we're not alone."
