A Vital Policy Change to Protect Medically Fragile Children

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The three founders of Advocates for Medically Fragile Kids pose with two members of Disability Rights NC staff at awards ceremony
The leaders of Advocates for Medically Fragile Kids NC received our Champion for Equality and Justice Award in July 2017. From left: Disability Rights NC Executive Director Vicki Smith; Natalie Weaver, Jenny Hobbs, and Elaine Nell of Advocates for Medically Fragile Kids NC; Disability Rights NC Director of Public Policy Corye Dunn.

By Corye Dunn, Director of Public Policy

A single word can make all the difference, especially when it comes to Medicaid policy.

Recently, the word was “life-sustaining” in the policies governing the Community Alternatives Program for Children (CAP/C). This program is for children with significant medical needs. It provides them with services in their homes so they do not have to live in institutions. Services available through CAP/C include respite, specialized medical equipment, and home and vehicle modifications. CAP/C enrollees can also access state plan Medicaid services like private-duty nursing.

Last year, the NC Division of Medical Assistance (DMA) added “life-sustaining” to the eligibility requirements for CAP/C. The policy then said that a child must have “a need for life-sustaining devices or life-sustaining care to compensate for the loss of bodily function…” to qualify for CAP/C.

We and other advocates for these children were concerned. Advocates for Medically Fragile Kids NC is a powerful group of parent advocates, and they were worried that the change to the policy could mean some children would not get the services they need. They were hearing from families that were denied access to the CAP/C program based on the new language.

For example, a child with a significant mobility impairment and might be able to eat and breathe on his own. He might need a power wheelchair and modifications to the family home and car in order to fit his wheelchair. He might also need help with toileting, regular repositioning to prevent the development of bedsores, and numerous medications. At night, he might need assistive technology to ensure his respiration is adequate because reclining makes it harder for him to breathe.

But if the State decided none of those services was “life-sustaining,” this child could be denied CAP/C.

For months, we worked with DMA to understand its reasoning behind the word change, and we talked with officials and families about the possible effect on medically fragile children. DMA determined that the wording did not reflect its true intent and might cause confusion.

In May, DMA staff assured Disability Rights NC and Advocates for Medically Fragile Kids NC that the word “life-sustaining” would be taken out of the policy document and that the more restrictive interpretation of eligibility had already been reversed.

We are thankful for the staff of DMA, who are willing to listen to the concerns of parents and community members, and for passionate partners like Advocates for Medically Fragile Kids NC.