By Anne Blythe
It has been a busy few weeks in the courts for an organization that has been a staunch advocate for North Carolinians with disabilities.
Disability Rights North Carolina announced a settlement agreement on Wednesday with the state Department of Health and Human Services in a long-running state court battle known as the Samantha R case.
And on Thursday, the nonprofit heralded a federal judge’s rejection of DHHS’ request to dismiss a lawsuit challenging the treatment of children with disabilities in the state’s foster care system.
Both cases focus on how people with disabilities are housed and treated in North Carolina. That includes foster children with mental and behavioral needs in locked psychiatric institutions, or PRTFs, and others outside that system in search of community- and home-based services beyond long-term care facilities.
Not providing such services, Disability Rights contends, violates the Americans with Disabilities Act.
“The ADA guarantees people with disabilities the right to receive the services they need in the least restrictive setting appropriate to their needs,” Virginia Knowlton Marcus, chief executive officer of Disability Rights NC, told NC Health News. “[W]e are simply enforcing the rights of people with disabilities to get care without being forced to rely on institutions.”
Knowlton Marcus’ organization joined forces with the North Carolina State Conference of the NAACP in late 2022 to seek the court’s assistance in preventing the continued “warehousing” of children of color in locked psychiatric facilities that can be dangerous.
“We hope the court’s ruling sends a strong signal that DHHS cannot continue ‘business as usual’ and must make significant, lasting changes to its children’s mental and behavioral health system,” Knowlton Marcus said in a statement about the ruling, which was entered March 29 by U.S. District Judge William L. Osteen Jr.
That could mean a trial is on the horizon. Or perhaps, as happened with the Samantha R case, mediation could lie ahead with a solution that avoids years of hearings, judgments and appeals.
Grim picture
In their lawsuit, filed in the Middle District of North Carolina against DHHS Secretary Kody Kinsley, the groups allege that children they represent withstood “sexual and physical abuse, bullying, and hate speech by both youth and staff; and face mental health deterioration and cocktails of strong psychotropic medications.”
From July 2020 to June 2021, DHHS sent at least 572 children in foster care to residential facilities, a disproportionate number of whom were young people of color, according to the 2022 lawsuit known in court shorthand as Timothy B. v Kinsley. The previous fiscal year, according to DHHS data, almost 50 percent of children sent to such places identified as Black, brown or “other.” Slightly more than 30 percent of the population in North Carolina identifies as people of color, according to U.S. Census quick facts.
“An institution is no place for any child, but children with disabilities — and disproportionately Black and Brown children — confined to PRTFs face worse outcomes and experience higher rates of maltreatment while in child welfare custody,” Deborah Dicks Maxwell, president of the North Carolina Branch of the NAACP, said in a statement issued Thursday. “It’s time to come to the table and put the health and safety of our children first.”
The lawsuit, filed Dec. 6, 2022, focuses on Title II of the Americans with Disabilities Act, which prohibits unlawful discrimination such as the institutionalization and segregation of children with disabilities when they could otherwise be integrated into programs and activities that match their needs in a community setting.
The court filings also build upon the landmark Olmstead decision issued by the U.S. Supreme Court in 1999, which states that it is unlawful to unnecessarily segregate people with disabilities without opportunities for work or play in their communities.
North Carolina has developed long-term plans to guarantee that doesn’t happen. Just last week, DHHS released its Olmstead plan for the coming year.
“People with disabilities have a right to the whole-person care and support they need to live within inclusive communities,” Kelly Crosbie, director of the DHHS Division of Mental Health, Developmental Disabilities, and Substance Use Services, said in a statement when the plan was released. “It’s our responsibility to ensure access to the community-based services that make this right a reality.”
While such blueprints for the future are welcomed by Disability Rights North Carolina and other advocacy organizations, they often have fallen short on specific details and concrete timeframes, according to some of their lawsuit documents.
Friction among advocates
That dissatisfaction led to Samantha R. v North Carolina, et al, a case filed in Wake County Superior Court in 2017 that after seven years of legal wrangling is on the verge of being settled.
The lawsuit was filed on behalf of the parents of Samantha Rhoney after they could not get the kinds of services they needed to keep their daughter living with them at home. In 2015, the Rhoneys have said they felt compelled to place their daughter in the J. Iverson Riddle Development Center is Morganton. That turned into a multi-year stay, much to their chagrin.
Benchmarks and assessments
In 2022, Superior Court Judge Allen Baddour issued an extensive ruling in the case that would have forced the state to provide services to people with intellectual and developmental disabilities in the home settings of their choosing.
The order prohibited new admissions into long-term care facilities by 2028, a timeline that created trepidation for some with family members in such facilities who were satisfied with the services inside them. Some worried such a deadline and the prospect of limited clientele would create untenable business models and prompt unwanted closings of facilities.
DHHS appealed Baddour’s ruling. The two sides have been in negotiation in an attempt to come up with something each side can live with to avoid a drawn-out appeals process.
On Wednesday, Disability Rights North Carolina and DHHS released statements saying they had come to an agreement that, if approved by Baddour, could result in more options for care for people with intellectual and developmental disabilities.
The proposed consent order sets out a two-year period in which DHHS must move more people into community-based services, including people in institutional settings who want to be in their homes or communities.
The waitlist for community-based services has grown to 17,530, according to a DHHS dashboard, but that number does not have to drop to zero, necessarily, under the proposed settlement agreement.
The agreement requires that DHHS move at least 249 people out of institutions into community-based care by June 2027.
To help with that goal, DHHS has agreed to create a plan that increases the workforce key to providing those kinds of direct services and also strives to increase the hourly pay rate.
The agency has been working to address persistent direct care worker shortages. In the winter, DHHS rolled out proposals to enhance training of nurses, behavioral health and other care providers while also acknowledging that legislative buy-in and allocations are necessary for meaningful progress.
To make sure there are teeth in the planning, the settlement proposal includes reporting requirements, benchmarks and built-in assessments. After the two-year period, Disability Rights North Carolina and DHHS will make recommendations for any other provisions or benchmarks needed.
“This proposed agreement marks the beginning of change, not the end,” said Emma Kinyanjui, Disability Rights North Carolina legal director. “Both DRNC and NCDHHS are committed to being in this for the long haul, because we know that communities work best when everyone, including people with disabilities, can live, work, and play in the communities of their choice.”
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