A local judge's ruling could pave the way for sweeping changes to how North Carolina provides services to people with intellectual and developmental disabilities.
Advocates praised the ruling saying it will improve services for those who need it most. However, state health leaders worry about unintended consequences and say they might appeal the ruling. In addition, even if the ruling stands, there is no guarantee of additional funding, which could leave the goals set out in the order unfulfilled.
Broadly, the order, signed by Superior Court Judge Allen Baddour, calls for the N.C. Department of Health and Human Services to ensure that people with intellectual and developmental disabilities (I/DD) aren't forced into an institutional setting. Instead, the state must provide community-based services that allow people to stay in their homes near family, friends and a support network.
"North Carolinians with I/DD and their families have waited far too long for this," said Virginia Knowlton Marcus, CEO of Disability Rights North Carolina. "This order should move the state to address the serious shortage of direct support professionals and shift funding from more expensive, less desirable institutions into North Carolina communities."
However, state health leaders say they're already providing community based services. Earlier this year, DHHS unveiled its Olmstead Plan to assist people with disabilities. Named for the landmark Olmstead v LC Supreme Court decision, the plan outlines goals to better serve people with I/DD, including expanding in-home services, increasing the number of front line workers, and addressing disparities in access to services.
"We as a department are fully committed to community-based services for people with intellectual and developmental disabilities. I think we've shown that over the years," said Dave Richard, DHHS deputy secretary for Medicaid.
While the Olmstead Plan outlines major strategy goals, it doesn't set specific targets. Baddour's order, on the other hand, sets specific annual benchmarks for diverting people out of institutional and to community-based settings. The first deadline is January 1, 2024.
The order also calls for a massive increase of the state's Innovations Waiver program. This waiver provides substantial funding to support people with I/DD who prefer to stay in their own homes and communities. Individuals or families can receive as much as $135,000 year in support, and the waiver is highly sought after by families in the I/DD community. Because of this, there is a waitlist of more than 16,000 people who qualify for the waiver, but aren't receiving the services because there isn't enough money.
The average wait time is five years, and the average beneficiary receives about $80,000 per year in services. The Innovations Waiver program currently has a capacity of a bit more than 14,000 slots, meaning there are more people on the waitlist than in the program.
Baddour's order calls for annual reductions of the Innovations waitlist, reducing it to zero by 2032. The order stems from a 2017 lawsuit brought by Samantha Rhoney against DHHS.
Rhoney has an intellectual disability, a movement disorder and other disabilities. She lived with her parents near Hickory and required continuous supervision and care. But her family saw reductions in services, and in 2015 when she was 27, felt forced to admit her to J. Iverson Riddle Developmental Center, a 285-bed state-operated institution in the North Carolina foothills.
After seven years, Rhoney came home to her parents, who say they are pleased with Baddour's order.
"I believe in my heart Samantha is in a beautiful home because God is giving her a blessing for all the trials she had to endure. I want people to know Samantha, I want people to see the beautiful side of her," said Dana Rhoney, Samantha's mother. "And I want the state to wake up and offer support (to others). The state could actually save money if they would offer the support."
