Updated 7:22 p.m. EST
A judge has ordered North Carolina to make it easier for people with intellectual and developmental disabilities to receive care at home rather than in institutions.
Disability Rights NC, which represented plaintiffs in the case, called the ruling "historic," while the state Department of Health and Human Services said the order could have negative consequences for the people it's trying to help.
The order was signed by Superior Court Judge Allen Baddour on Wednesday and outlines several actions the state must take — including that the state must start moving thousands of people with intellectual or developmental disabilities out of institutions over the next eight years, and stop admitting them to institutions except for short-term stays within six years.
Case background
The case was originally filed in 2017, and revolves around a woman named Samantha Rhoney, who was born with an intellectual disability, a movement disorder and other disabilities.
For many years, she lived at home with her family in Hickory, North Carolina, and received at-home care through the state's Medicaid system.
As she grew older, her at-home caretaker, Partners Health Management, began cutting back services through a process her attorneys called "fading," in which rehabilitation services are cut back to encourage a patient to live without them.
As services were cut, Rhoney's parents said they had no choice but to move their daughter, then 27, away from her home to the J. Iverson Riddle Developmental Center to continue to receive care.
Her parents and other families with disabled children then sued the state, arguing North Carolina was violating the Persons with Disabilities Act by unnecessarily institutionalizing people with disabilities and failing to provide them care in the community as an alternative.
Judge orders state to take action
The judge in the case agreed with the families in a 2020 ruling, and has now ordered North Carolina to take measurable steps to ensure people with intellectual or developmental disabilities can receive care at home or in a community-based setting if they choose.
The order requires the state to expand its at-home care network and move thousands of people with intellectual or developmental disabilities out of institutional settings within eight years if they prefer to live in a "community-based setting."
The state must also stop sending people with intellectual or developmental disabilities to live in institutions within six years — except for short-term stays or for stabilization.
In addition, North Carolina must hire more direct-care workers to administer community care, and work through a backlog of more than 16,000 people with intellectual disabilities who are waiting to receive at-home care through the NC Innovations Waiver program.
“The state has been saying for many years that they want to serve more people in the community. We think that this order is a great impetus to go ahead and do the things that we all know need to be done,” said Lisa Grafstein with Disability NC.
State pushes back on timeline, other requirements
An appeal is possible, however.
Dave Richard, deputy secretary of NC Medicaid, told reporters Wednesday the state was concerned by “aggressive” timelines in the order, and was especially concerned with the requirement halting long-term admissions to institutions and care facilities.
Richard said there were hundreds of small group homes in North Carolina that serve people with intellectual disabilities. Many of them serve six people or less, Richard said, and preventing them from admitting long-term patients could put them out of business.
Richard also worried the department would have trouble finding enough direct care workers to handle the dramatic increase in need for at-home care, and said the department would also likely struggle to find housing for many disabled people.
"Frankly, the lack of understanding of the complexity of how our system works is concerning," Richard said. "If the order stood, obviously that would be a huge lift for our department, our community providers, in trying to figure out how best to manage that without harming individuals."
Richard said the state was considering an appeal with counsel from the state attorney general's office and state solicitor general's office.
