Mother fighting back after state threatens to cut assistance for - | WBTV Charlotte

Mother fighting back after state threatens to cut assistance for medically fragile children

Photo courtesy of the Weaver family. Photo courtesy of the Weaver family.
CORNELIUS, NC (WBTV) -

When Sophia was born seven years ago, her parents, Mark and Natalie Weaver, chose to cherish every second they had with their little girl. 

“Always in the back of my head - I don’t know if it’s going to be the last picture we take of her or her last birthday. There’s a constant panic, and you have to learn how to calm it so you can live day to day,” Natalie said.

Sophia was the Weaver's first born. The child has Rett Syndrome, a neurological disorder which has robbed her of her speech.

“It basically traps you inside your body,” Natalie said. 

If that’s not enough, Sophia was also diagnosed with an unknown disorder causing facial, hand and foot deformities. Natalie says no other child in the world is like Sophia. 

“She is at a high risk for sudden death, so she needs to be watched,” Natalie said. 

Every moment of every day and night, Sophia needs eyes on her little body.

“There have been many times where she just stops breathing. It’s silent. Or she chokes because of her facial deformities,” the mother said. 

For years, North Carolina’s Department of Medical Assistance has helped provide around-the-clock nursing care and equipment that has allowed the Weaver's to keep their girl at home. But that could soon change.

Weaver says care for a child like hers costs hundreds of thousands of dollars a year, but the funding is in jeopardy of being cut in half.

“I just went into panic mode and couldn’t believe that a program that helps special needs children would be affected like this,” Natalie said. 

According to the state, they're looking to combine two assistance programs - one for adults and one for children. But the state’s decision hasn’t been made. They’re taking public comment on the cuts until May 21.

Natalie is tirelessly fighting to keep her little girl's care intact. She says without it, many families may be forced to institutionalize their children.  

“I’m not only fighting for Sophia, I’m fighting for families who don’t have a voice and are unable to fight,” Natalie said. 

Sophia may not be able to say it, but her mom can tell her little girl is proud of the work being done to make sure she see’s another day.

“These are voiceless, fragile children. And we are parents going through so much every day to fight for our kids, and it’s really hard to fight for your child’s life every day and now we’re fighting for their services,” she said. 

WBTV received this statement from the Department of Medical Assistance:

CAP Merge combines the Community Alternatives Program for Children (CAP/C) and the Community Alternatives Program for Disabled Adults (CAP/DA) into one comprehensive Home and Community-Based Services (HCBS) waiver.  Individuals with disabilities comprise the CAP/C and CAP/DA target population.

The CAP Merge has a two-fold purpose:

  1. Streamline waiver processes; and
  2. Align with the Centers for Medicare and Medicaid Services (CMS) HCBS 2014 Final Rule [CMS-2249-F/CMS-2296-F]. HCBS waivers require states to operate a Quality Improvement Strategy (QIS) for the oversight of six overarching waiver assurances and associated performance measures.  Merging these two waivers will allow DMA to more effectively set and measure benchmarks and outcomes for all served in the merged waiver.

The CAP policy public comment period is April 6, 2016-May 21, 2016.

The Division of Medical Assistance welcomes feedback from CAP-C stakeholders and will carefully consider all information submitted during this public comment period. You can do so here: https://dma.ncdhhs.gov/get-involved/proposed-medicaid-and-nc-health-choice-policies 

You can find more information about Weaver's fight on caringbridge.org, or Facebook here.

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