Families pan proposed DHHS changes to program for special needs children

The Department of Health and Human Services is looking at merging two Medicaid waiver programs for efficiency. The move would would limit the number of slots available in the program for children with special needs and would reduce money for such things as paying for overnight nurses for a certain number of hours.

"You just pray the services will be there, and so far, they have, but literally, this is your worst nightmare," Brittany Johnson said.

The single mother receives benefits from the Community Alternatives Program for Children, or CAP-C, to have a nurse in her Clayton home 72 hours a week to care for her 13-year-old daughter, Meg, who has cerebral palsy. The nurse is there when Johnson is at work and runs errands, and she said the changes DHHS has proposed would mean Meg could have nursing assistance only 40 hours a week.

"Not working is not an option," Johnson said. "I don't know what I would do. There's no answer to that."

Robin and Dan Marx of Cary are in a similar situation. Their 13-year-old son, Aidan, has a form of muscular dystrophy, and they receive $72,000 a year to pay for nursing aides for him as well as a modified van and alterations to their home to accommodate his wheelchair.

"This is a 350-pound wheelchair. You can’t just put in a car and drive around with it," Robin Marx said.

Changing CAP-C would cut the family's Medicaid benefits by $40,000 a year.

"It puts us in a situation where we have to face the possibility of coming up with a different home for my son," Dan Marx said.

DHHS Deputy Secretary Dave Richard, who oversees the state Medicaid program, said merging CAP-C with a similar waiver program for disabled adults – the waivers allow families whose incomes don't qualify for Medicaid to receive funding to provide care for relatives outside of an institutional setting – has been in the works for years and is designed help families transition from one to the other as their children get older.

But the plan has caused such an outcry from affected families that the agency is rethinking its options, Richard said.

"Sometimes when you think you are headed in the right direction, it takes feedback from the public to understand the impact," he said. "Public comment matters."

Johnson and the Marxes say they are exhausted caring for their children, but they have to continue fighting to ensure that Meg and Aidan get the care they need.

"You’re consumed with, 'How am I going to take care of this child?' from the moment she was diagnosed, and you fight tooth and nail for the basic services they need," Johnson said. "Kids should never have to struggle for their basic necessities."

"It’s almost like they just don’t seem to care," Robin Marx said. "One of the things I’ve learned, anyone’s child could be in this situation tonight."

Information about the next steps in the process will be sent to providers and families in the coming days, DHHS spokeswoman Kate Murphy said, but there was no word on when a final decision would be made.