Lydia Nell in the neonatal intensive care unit after her surgery to remove most of her intestines due to necrotizing enterocolitis.
Lydia Nell in the neonatal intensive care unit after her surgery to remove most of her intestines due to necrotizing enterocolitis. Photo courtesy: Nell family

The temporary waitlist begins this week and will extend until federal officials give approval to a new application from North Carolina’s Medicaid program.

By Thomas Goldsmith

In North Carolina, some families with very sick children can qualify for Medicaid help to keep the child at home – no matter the family’s income – if that assistance saves money over hospitalization or other residential care.

Some premature babies become “medically fragile” children who require almost constant care, such as Lydia Nell. Nell’s mother, Elaine, has become an activist for families such as hers, who receive services from the CAP/C program. Photo courtesy: Nell family

On Monday, the state’s Medicaid division started a waiting list for new recipients of these services, supplied under the waiver program known as CAP/C, or Community Alternatives Program for Children.

State officials who met with concerned families in a Tuesday webinar said the establishment of the list came at the direction of the federal Centers for Medicare and Medicaid Services when the number of families using the service exceeded projections by nearly 50 percent.

North Carolina Medicaid officials said that the state is applying for an extension to the waiver, which allows services to families who aren’t eligible for traditional Medicaid. If CMS accepts, that could end the waiting list by early 2017.

Advocates for families noted that acceptance into the CAP/C waiver program does not mean that relatives relinquish all care to employees hired with state/federal funds. Family caregivers still must supply what’s called “natural support,” or unpaid efforts by family, friends and others to provide care.

“It’s incredible what families are doing, ” said Corye Dunn, director of public policy for Disability Rights North Carolina. “I want to be really clear that families are providing the bulk of the support. It’s just that CAP/C ties it all together. Families are still doing an enormous amount of work.”

Participants in the Medicaid program for these medically fragile children must have a doctor’s statements of eligibility. They can receive help with ventilators, tracheostomy tubes, oxygen administration, in-home nursing and other services.

“We are talking about medically fragile kids,” Dunn said. “They have significant needs in order to stay out of a hospital or a nursing facility. The way the waiver works is that you have to fund it in a way so that it’s less expensive to keep people home.”

WRenia Bratts-Brown, the North Carolina Medicaid official who led Tuesday’s web linkup with parents and others, said the state’s original waiver for fragile children began in 2010, ended last year, and has been extended into this year.

Disability Rights NC attorney Corye Dunn (in red) makes a point to several mothers of CAP/C children after a public listening session with DHHS earlier this month. Photo credit: Rose Hoban

The original waiver update submitted to CMS would have dramatically cut hours to families, but DHHS delayed sending that application to federal officials after outcry from families. That original update would have expanded the program to 4,000 children, but delaying the application slowed the process for getting those extra slots approved. LINK TO STORY

That state first projected that 1,600 children would need help under the waiver, but by July of this year, the number covered was 2,361.

“The number of unduplicated beneficiaries now has surpassed the number approved,” Bratts-Brown said. “For that reason a waitlist had to be created.

“Our goal is to amend the waiver, make a projection to serve a larger number of individuals and … to be able to submit that waiver to CMS sometime in September.”

Beyond that, CMS has up to 90 days to approve any waiver submitted to the agency.

Families are typically accepted to the waiver program on a first-come, first-served basis, except in cases where the child is being discharged to home from a hospital with need for immediate assistance. That group would include children with a tracheostomy tube or other device that requires maintenance by trained professionals such as a nurse.

“The bigger issue is that why on earth would we institutionalize children whose families want them to be at home?” Dunn said.

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Thomas Goldsmith

Thomas Goldsmith worked in daily newspapers for 33 years before joining North Carolina Health News. Goldsmith is a native Tar Heel who attended the UNC-Chapel Hill, and worked at newspapers in Tennessee...