Thousands in North Carolina living with intellectual, developmental disabilities waiting on waivers

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GUILFORD COUNTY, N.C. -- Tens of thousands of people across the state living with intellectual and developmental disabilities are counting on one waiver. It's a waiver that lets them get the care they need at home.

The problem is the need outweighs the number of NC Innovation waivers.

Guilford County has the longest waitlist in the Piedmont Triad. More than 1,131 people are waiting.

FOX8 is told that wait could be more than a decade.

"It's very hard to find doctors. It's very hard when you go into an ER and people shrug you off because they just don't know how to help you," Danielle Murphy said.

The High Point mom's son, Declan, has a very rare, terminal disease.

"It's one in a million. He's literally one in a million," Murphy said. "Pelizaeus-Merzbacher disease is where his brain, he does not produce a protein called myelin. Myelin is what coats all of your nerves in your body."

Now almost 4-years-old, Declan needs help sitting, standing and walking. He also needs to see different therapists daily.

"An Innovations waiver for us would provide respite care. It would provide the modifications we need to our house to make it handicap accessible for him. It would also provide modifications to our car for him," Murphy said.

She and her husband work several jobs to help pay for the extreme costs to care for Declan. Insurance only covers part of it.

"It's about $900 a month," Murphy said. "Out of pocket."

So why is it so tough for families, like the Murphys, to get this waiver?

"We're limited to what we're able to do with money from the General Assembly, and also frankly, federal and state rules," said Dave Richard, the deputy secretary of North Carolina Medicaid.

It also comes down to space.

Richard tells FOX8 they only have 12,500 waivers. Just as many people are still waiting for one.

"We don't think it's acceptable that we have waitlists as long as we have," Richard said. "We want to see those additional waiver slots."

Declan has been on the waitlist for two years.

"They told me 10-12 years that we would be on the list," Murphy said.

One reason is that people with disabilities are living longer.

"A child who gets on the waiver [who is] 6-7 years old, they're liable to be in that slot for 50 years, 60 years," Richard said. "Yet we still have kids being born with developmental disabilities who need these services. So it's not as though these slots turn over quickly."

It's a daily battle for the Murphys.

"It's taken three and a half years of fighting to even get half the stuff he needs," Murphy said. "It's not even everything yet."

"We know these families are trying to do their best to make sure their sons and daughters have the best life possible," Richard said.

The waivers are not cheap. Each one costs about $65,000.

Richard says it's extremely important for families to continue to tell members of the General Assembly how important these waiver slots are, so they can get more funding.

N.C. State Sen. Joyce Krawiec, of District 31, said, “Perhaps more than any other group, the IDD population deserves funding for at-home care. I’d like to eliminate the waitlist over the next several budget cycles. The first step toward doing that was the budget we passed earlier this year, which provides $21 million to remove 1,000 families from the waitlist. Unfortunately, Governor Roy Cooper – Dave Richard’s boss – vetoed it. Mr. Richard should speak to his boss about it.”

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