The state Department of Health and Human Services has shown some progress in meeting court-ordered deadlines to make sure community services are available to people with intellectual or developmental disabilities, but an advocacy group questions what the state data can prove.
The court order is the result of a lawsuit called Samantha R., brought by Disability Rights NC against DHHS on behalf of people who were institutionalized or faced institutionalization. The lawsuit claimed the state was not doing enough to support people with disabilities who want to live in their communities; it was named for Samantha Rhoney who spent seven years in a state facility because her parents no longer had the support to keep her at home.
Disability Rights won in trial court, with the judge issuing an order that would have given the state 10 years to eliminate the waiting list of people seeking services under a Medicaid program called the Innovations Waiver.
DHHS appealed but later dropped the appeal and the two sides agreed to a consent order that set out goals aimed at keeping people out of institutions and increasing use of community-support services. The consent order dropped the required elimination of the waiting list.
More than 16,000 people were on the waiting list in late 2022. It’s grown to 18,950 people as of March 31 of this year.
“We’re all watching in horror as the numbers continue to go up,” said Lisa Grafstein, a lawyer with Disability Rights who is also a state senator from Raleigh.
Disability Rights hosted an update on the Samantha R. case on Wednesday and will host another Thursday evening.
According to the state’s latest report, DHHS has exceeded the first-year court-ordered goal of moving people out of institutions by increasing access to community services. Under the court order, at least 78 people should have moved from institutions by June 30 of this year. DHHS reported that 97 people had moved by March 31.
Based on the knowledge that some people are approved for community services that they don’t receive, the court ordered that by June of this year 85% of authorized services should be used. DHHS reported that 85.2% were being used.
“The data is not an end in itself,” Grafstein said. “It’s part of this longer term process of getting the state into compliance with rights of people with intellectual and developmental disabilities, and that means providing access to services in the community for those who want it, most prominently eliminating the waiting list.”
DHHS reported that more than 11,000 people with intellectual or developmental disabilities received services through a different Medicaid program. But that program has limited services and limited hours, said Emma Kinyanjui, Disability Rights’ legal director. It’s unclear what kinds of help people are receiving and how far it’s going to meet their needs, she said.
There aren’t enough people who do the low-paid, community-based work, which is one of the reasons people wait for services.
As a form of professional development, the state established an advanced training certificate program for the workers, called direct support professionals, that’s offered at three community colleges. Additionally, DHHS offered $3 million to provider agencies to pay hiring and retention bonuses.
Next summer, DHHS and Disability Rights are going to review the data the state has collected and talk about next steps, said Corye Dunn, Disability Rights’ public policy director. The two sides may agree on what to do next, she said. But if the state moves to dismiss the case, Disability Rights would oppose it, she said.
“Our hope is that we can all agree that more needs to be done, especially around the waiting lists and DPS (Direct Support Professionals) pay,” Dunn said.
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