More people with disabilities in NC wait for services while a court fight continues

It’s the dilemma at the center of the frustration and worry for people with disabilities and their families in North Carolina. 

People with intellectual or developmental disabilities wait years for services that help them live in communities rather than institutions. The wait list has grown to 17,000 people.

There’s not enough money for all of them, but the regional mental health offices that approve the services and authorize payments don’t spend all the money they have.  There’s a shortage of workers who provide people with disabilities the assistance they need to live outside institutions. People willing to take on challenging jobs that come with low hourly pay that falls short of a living wage are scarce. 

Low pay for support workers and the growing waiting list have been debated for years. 

“Y’all have been waiting for a really long time,” Kody Kinsley, state Department of Health and Human Services secretary, said at a town hall meeting of the NC Council on Developmental Disabilities last week. “We’re far beyond the point of crisis. And we’ve seen this coming.”

Court ordered action

The nonprofit advocacy group Disability Rights North Carolina won a lawsuit last year centered on the lack of community services. A trial court ordered the state to eliminate over 10 years the waiting for a special Medicaid program that provides community services for people with disabilities. The state appealed, and the two sides are about to enter mediation.  

A special Medicaid program called the Innovations Waiver helps people with intellectual or developmental disabilities pay for services in the community, to prevent them from having to live in institutions.  The state and federal governments pay the cost, with the federal government picking up most of the tab. The state agrees to pay for a certain number of “slots,” or funded waiver recipients. 

Judge Allen Baddour’s landmark ruling last year in what’s known as the Samantha R. case required the state to eliminate the waiting list by July 1, 2032, and to find ways to move people out of institutions or to keep them from going into them in the first place. 

In a February hearing, Baddour chided DHHS for saying for years it needed to plan, but failing to outline definitive actions. 

After Baddour’s November order calling for more community services and an end to the waitlist, DHHS devised a detailed multi-year plan to increase Innovations Waiver slots, increase wages for direct care workers, and establish an online certificate program for workers that would be linked to higher provider rates beginning in 2025. These steps would depend on state funding. 

Under the DHHS plan, the regional government mental health offices that manage the Innovations Waiver money would be expected to set goals for authorizing services and would have to report their performance on online dashboards.

Budget solutions remain elusive

The proposed budget Gov. Roy Cooper released in mid-March included money for 1,000 additional slots and funds to support pay raises that would bring direct care worker wages to $18 an hour. His budget also suggested adding thousands of slots over the next 10 years. 

While Cooper’s budget signaled a desire to add more slots, state budgets cover only two years. The legislature appropriates money and typically ignores the spending proposals governors submit. 

The Senate budget proposal added 350 waiver slots. The House budget proposed to pay for an added 250 slots. Each chamber’s budget had money to increase wages of direct care workers by an average of $6.50 per hour above the state’s industry average. 

Baddour’s order said that after Jan. 1, 2028, no more people should move into institutions, but said none would be required to close.

Kinsley said Thursday that the department agreed with eliminating the waitlist and increasing options for community care. But the department could not guarantee legislative funding to meet those requirements. 

He worried the order would force the “wide-scale closing” of group homes and intermediate care facilities without community services in place. 

If two people moved out of a group home that had six residents, and no one else is allowed to move in, the home wouldn’t have the money to stay open, Kinsley said. 

“In that ruling, the only thing that I could guarantee that I could do was close the front door of the facilities,” he said. “Everything else was depending on money from the legislature.”

Republican legislative leaders have made clear their view that state courts cannot tell the General Assembly how to spend money. 

“Closing facilities before community-based alternatives are available is scary,” Kinsley said. 

Nancy Baker, whose 54-year-old son Jerry lives in a group home, dreads the thought that it could close. 

“The thought of the group homes being close is absolutely devastating,” she said in an interview. “I’m 75 years old. I have no earthly idea where Jerry would go.”

Baker said Jerry lives in a group home with five other people, four of whom he has known since they were all five years old.

“We really need to think about what we’re doing when we’re talking about closing facilities, closing group homes,” she said. “This is Jerry’s home.”

Next steps

Disability Rights NC asked Baddour to change his order to exclude intermediate care facilities from the places that would need to stop admitting people in 2028. 

The group asked for the change because of community concerns that options for living outside institutions would not be in place by then, and that facilities closing would force out people who wanted to remain, Lisa Grafstein, a lawyer for Disability Rights, said in a July email. Grafstein is also a Democratic senator from Wake County. 

The state objected to Disability Rights’ request, saying in its legal response that its proposal to change the order was already denied once, that the two sides were about to start mediation, and that ending admissions to adult care homes would limit people’s choices. 

DHHS and Disability Rights have mediation scheduled with NC Appeals Court Judge Tobias Hampson later this month. Questions about wage increases for direct care workers and more waiver slots will be answered when Republican legislators present their final budget.