RALEIGH, N.C. (AP) — North Carolina's health agency is weighing whether to challenge a judge's order demanding that the state ramp up services for people with intellectual and development disabilities to allow more of them to live at home or in their communities.

What You Need To Know

  • A judge in 2020 allowed the state health agency to develop a plan to enable more people with intellectual and developmental disabilities to live at home or in their communities

  • But the judge on Wednesday says recommendations to address the problem have not been carried out

  • The judge's decision includes an order that thousands of people with intellectual or developmental disabilities must be moved to community-based programs by 2031

  • A state health official says that his agency has concerns about the judge's order and that it might have unintended consquences

In 2020, Superior Court Judge Allen Baddour ruled that too many such people were forced to live in institutions in violation of state law.

Baddour allowed the Department of Health and Human Services to develop a plan to address the violation, but recommendations made by a consulting firm haven't been carried out, the judge wrote Wednesday while directing his own remedies.

Baddour ordered that at least 3,000 people must be diverted or shifted to community-based programs by early 2031.

Separately, he told the DHHS to eliminate before 2032 a waiting list of roughly 16,000 people who are qualified to participate in a Medicaid-funded program that helps them live at home or outside of an institution.

A shortage of well-paid direct-care workers also must be addressed by the DHHS, the judge ruled.

Families 'have waited far too long'

North Carolina residents with intellectual and development disabilities and their families “have waited far too long for this,” said Virginia Knowlton Marcus, CEO of Disability Rights North Carolina. The nonprofit is a plaintiff in a 2017 lawsuit along with several people with disabilities and their guardians that led to Baddour's rulings.

“It is long past time for the state to enable people with (these disabilities) to have independent lives in the communities of their choice. This is no different than what people without disabilities expect and demand every day," Knowlton Marcus said.

Dave Richard, the DHHS deputy secretary for Medicaid, said Thursday that the department has several concerns about Baddour’s order but hasn’t decided whether to appeal it.

'Unintended consequences'

“We are all for enhancing community-based services, giving people the choices that they need,” Richard said in a brief interview, but Baddour's roadmap in the order "has the possibility that actually creates some unintended consequences.”

Baddour didn't describe how much state or federal money would be required to reach compliance. Disability Rights NC suggested that it could cost hundreds of millions of dollars annually. Medicaid would fund many of these services — at least two-thirds of the funding would originate from the federal government — helping generate demand for new service providers and jobs, the group said in a news release. The state will save money with the shift, Knowlton Marcus said.

Baddour’s ruling requires the DHHS to meet annual goals for reducing the Medicaid NC Innovations Waiver waiting list and for transitioning people with such disabilities away from living at the state’s three large development centers, privately run intermediate care facilities or adult care homes. Individuals who prefer living in an institution or are too medically fragile to live somewhere else wouldn't be required to move.

Related

The state budget approved by the General Assembly in 2021 and signed by Gov. Roy Cooper included roughly $30 million in state funds over two years to offer the Innovations Waiver option to another 1,000 people with intellectual and development disabilities. But there would have to be significantly more formal legislative buy-in to commit to much higher spending levels.

Richard said that Baddour's stipulations don't take into account the complications associated with shifting services and that DHHS has a written plan to move more people to community settings. He also said the judge's directive that new admissions at institutions of people with these disabilities stop as of January 2028 — with some exceptions — would lead smaller facilities to close, denying choices to other families.

Baddour wrote that he's not ordering institutions to close, and the nonprofit Disability Rights said private facilities could switch over to provide more community-based services.

The lead plaintiff in the case is Samantha Rhoney, who at age 27 was living with her parents near Hickory and receiving community-based services for her intellectual disability and other disorders. Her family said she was forced into the state-run J. Iverson Riddle Center in Morganton when community-based services offered by a managed-care organization eroded. Appeals to keep her at home were unsuccessful.

“It still bothers me today,” Tim Rhoney, Samantha Rhoney's father, said. "I kept telling them she’s going to have to go to an institution, and they just didn’t care.”

His daughter, now 33, recently moved out of the Riddle Center — where she still goes once a week for a day-services program — and into a home.