9 Investigates after mother says state program not helping sick child

Story highlights

Union County boy has rare genetic disorder and doesn't develop normally.
His mother reached out to a state program to help fill gaps in her insurance.
She contacts Eyewitness News after she finds people on the program are not getting services or waiting for approval.

UNION COUNTY, N.C. — By the looks of Jake, a Union County boy, you'd think he was like any other child. But when you meet his twin 15-month-old brother Brody, it's obvious that Jake is not your average child.

"Your whole world falls apart," said his mother Rebecca, who learned that Jake he had a rare genetic disorder. "Not having any idea what it means, and your whole world and everything you waited for and everything you thought is gone in 1 to 5 seconds."

She found out at 10 weeks old that Jake wasn't developing normally, and may never be able to move.

"(He) will not be able to sit up, bring his head up. Anything," she said.

The new mother wasn't going to give up. She has a medical background and knew that the earlier he got therapy, the better.

Her private insurance covered some of the care, but not things like a nurse, and bills were mounting.

CLICK PLAY: Rebecca discusses CAP-C program

So she turned to a state program known as CAP-C to fill in the gaps where insurance couldn't help.

<strong>"Health insurance covers a certain wheelchair, but not the battery that makes the wheelchair work. Or the ramps that make the wheelchair come into the house, or into the car," Rebecca said.</strong>

She was accepted into the program and started contacting local approved providers to get a nurse.

And that's where the problems began.

"Nobody wanted to take his care. Nobody wanted to take him as a new client," she said.

The program designed to help children like Jake apparently wasn't helping at all.

The more Rebecca researched, the more she realized that she wasn't alone.

"I started calling other mothers, who are on a special website we have, (and) that's when I really understood how many are having issues with this all over the state," she said.

CLICK PLAY: Rebecca speaks about getting the runaround trying to get help

She said more than 100 children across the state were in her same boat: either not getting services of waiting in limbo for approval.

She contacted Eyewitness News.

Channel 9 started investigating and called North Carolina Rep. Craig Horn for some help.

His office started looking into the matter and told us it seemed that the Department of Health and Human Services appeared to be taking a "time out" from approving children for the program.

His office put some pressure on, and within hours, that changed.

Channel 9 also contacted providers, who said there can be different reasons for not taking a case, but they are accepting new patients.

Little Jake was in.

<strong>"Frankly, I believe people were embarrassed," Horn said. "These families fell through the cracks. There was no good reason for it and we can do something about it, virtually with a phone call."</strong>

Eyewitness News contacted State Deputy Secretary of Medical Assistance Dave Richard. He told anchor John Paul over the phone that they've had personnel problems.

"We've had some staffing issues at points, (and) we did have at some time probably less staff applied to that," Richard said. "But that didn’t cause a backlog, as far as I know."

When it came to providers not taking on cases, the state was not aware of any issues.

Officials want anyone with problems to contact them, and acknowledged that they can always do better.

"We certainly know we are not always perfect. We make mistakes, but we want to get these systems right," Richard said.

CLICK PLAY: Rep. Craig Horn discusses the lessons learned

As for Jake, his future is uncertain.

Doctors are still trying to figure why he's not developing like his twin brother. His mother is just relieved that she has one less thing to worry about.

"It's really difficult to understand how medically fragile children can't get the care they need," Rebecca said.

Read our past investigations: