The state on Monday stopped adding more children to a Medicaid program that pays for in-home nursing care and other benefits.
The program is called Community Alternatives Program for Children, or the CAP/C waiver, which offers care to “medically fragile” children who need feeding tubes, use ventilators or who cannot learn basic activities such as dressing or bathing.
CAP/C is called a waiver program because families do not have to meet the usual poverty-level income guidelines to qualify. The program pays for some services that regular Medicaid does not. The state’s federal waiver expired in June 2015 but the state was granted extensions to be able to keep paying for services.
The federal government told the state in June that it had to start a wait list, said Sandy Terrell, director of clinical policy at the state Medicaid office. Parents and companies that offer case management services were surprised to learn about the wait list just a week ago.
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“It absolutely was abrupt,” said Julia Simmons of Cary, who runs a case management company and whose son uses the CAP/C waiver. Her son, Woody, has a seizure disorder, cannot walk and uses a gastrostomy tube. “For those of us out here in the field, it was kind of out of nowhere,” she said.
The state was expected to have about 1,700 children using the waiver, but it had nearly 2,400 as of June 2016.
The state has an extension that runs out in September that allows it to keep the program going for children already using it. The state Medicaid office will ask for another extension that will last until the end of the year. The office expects to have its application for a new waiver ready to submit to the federal government in December, Terrell said.
The wait list won’t be lifted until the new waiver is approved, and there’s no saying how long that will take, she said.
For parents looking for an alternative to CAP/C, Terrell suggested families check to see whether they qualify for regular Medicaid. If they are already using Medicaid, they can ask their local social services departments about services they can receive, she said. If families use private insurance, they can look for benefits under those plans.