Hospice care now available to kids, young adults to age 21 in N.D.

Morgan Kolling received weekly visits from a hospice social worker when she was battling terminal brain cancer.

The visits, as well as those from nurses and aides, helped provide a respite for the Davenport, N.D., family.

Hospice aides delivered needed medical supplies for the 8-year-old, allowing her parents to be at her side without interruption, but also to take occasional breaks as caregivers.

“It allowed us to stay home with Morgan and not miss a moment of being with her,” Angela Kolling said.

Now hospice care is essentially available to all children in North Dakota under the Medicaid program.

Children and young adults up to age 21 with “life-limiting” diagnoses are eligible for North Dakota’s Children’s Hospice Program, which can serve up to 30 at a time.

That number was set after reviewing death records of children in recent years, with the goal of establishing a cap that would serve all children who need the services, said Karen Tescher, an assistant director of medical services at the North Dakota Department of Human Services. The budgeted cost is $27,138 per child per year.

Dr. John Thomas, medical director of Hospice of the Red River Valley in Fargo, said North Dakota’s program is unusual in that essentially all children are eligible.

“That’s unusual and different and I think very special,” he said. “The state deserves a lot of credit for that.”

In Minnesota, as in other states, eligibility for hospice services through medical assistance depends on family income.

Unlike hospice for adults, the children’s hospice program can provide curative therapy and comfort care. That’s because parents understandably often want to try aggressive treatments, even if the odds appear slim, to allow every chance of survival for their child. A very different decision could be made, say, for an elderly terminal patient with dementia, he said.

“The benefits and burdens of that decision may be different,” he said.

Providing therapeutic care and comfort care for children with life-threatening illnesses spares their family from having to chose between the two, Thomas said, adding, “That’s a big deal.”

Most private health insurance companies, including Blue Cross Blue Shield of North Dakota, cover hospice care, although coverage varies widely, Thomas said. But coverage through medical assistance opens access to hospice services to essentially all children, officials said.

The North Dakota Children’s Hospice Program provides a full range of services, including a nurse case manager, respite care, home health aide support, nursing services, hospice, therapy and grief counseling.

“No parent ever thinks that they will watch their child go before them,” said Angela Kolling, whose daughter succumbed to her illness last summer. “But knowing there is help out there to take some of the burden off the family is a wonderful choice to have.”

For more information: Families are encouraged to contact the North Dakota Department of Human Services’ Medical Services Division at (701) 328-3701 if they have a child age 21 or younger with a life-limiting diagnosis.

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