It has been an eventful and significant few weeks in the courts for an organization that has long been a staunch advocate for North Carolinians with disabilities. With a strong commitment to protecting the rights of people with disabilities, Disability Rights North Carolina has made notable strides in two major legal battles that could reshape the landscape of care and services in the state.
On Wednesday, Disability Rights North Carolina announced a settlement agreement with the state Department of Health and Human Services (DHHS) in the long-running state court battle known as the Samantha R. case. This milestone marks a potential turning point in how the state addresses the needs of people with intellectual and developmental disabilities, ensuring more care options that prioritize community-based services over institutional settings.
The momentum continued on Thursday when the nonprofit heralded a federal judge’s rejection of DHHS’ request to dismiss a separate lawsuit. This case challenges the treatment of children with disabilities in North Carolina’s foster care system, shining a light on the systemic issues affecting some of the most vulnerable populations in the state.
Both cases center around a common theme: how people with disabilities, especially children, are housed, treated, and supported in North Carolina. These legal actions highlight the ongoing struggle many face, from foster children with mental and behavioral needs confined to locked psychiatric institutions—known as Psychiatric Residential Treatment Facilities (PRTFs)—to others outside these systems seeking community- and home-based services that go beyond the confines of long-term care facilities. The lack of more care options leaves families and individuals with limited choices, often forcing them into restrictive environments that may not meet their needs.
Disability Rights North Carolina argues that this failure to provide appropriate services violates the Americans with Disabilities Act (ADA).
“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.”
The nonprofit’s advocacy extends beyond legal arguments; it represents a call to action to address systemic injustices that have persisted for decades. In late 2022, Disability Rights North Carolina teamed up with the North Carolina State Conference of the NAACP to seek the court’s assistance in stopping the continued “warehousing” of children of color in locked psychiatric facilities—settings that can often be dangerous and detrimental to their well-being.
“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 entered on March 29 by U.S. District Judge William L. Osteen Jr.
With this ruling, the path forward is now open to either a trial or, as seen in the Samantha R. case, mediation that could lead to a solution without years of drawn-out legal proceedings.
The federal lawsuit, filed in the Middle District of North Carolina against DHHS Secretary Kody Kinsley, paints a troubling picture of the treatment of children in the foster care system. The groups allege that children they represent have endured “sexual and physical abuse, bullying, and hate speech by both youth and staff; and face mental health deterioration and cocktails of strong psychotropic medications.”
The statistics are alarming. Between July 2020 and June 2021, DHHS placed at least 572 foster children into residential facilities. A disproportionate number of these children were young people of color. According to the 2022 lawsuit, known as Timothy B. v. Kinsley, nearly 50 percent of the children sent to such institutions identified as Black, Brown, or “other,” despite people of color making up only about 30 percent of North Carolina’s population, as reported by U.S. Census data.
“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.”
This lawsuit is grounded in Title II of the ADA, which prohibits unlawful discrimination, including the institutionalization and segregation of children with disabilities when they could be integrated into community-based programs better suited to their needs. The court filings also build upon the landmark 1999 Olmstead decision by the U.S. Supreme Court, which declared that unnecessary segregation of people with disabilities violates their rights under the ADA, reinforcing the principle that people with disabilities should have the opportunity to live and thrive within their communities.
Recognizing the importance of these legal precedents, North Carolina has been working to develop long-term plans to comply. Just last week, DHHS released its updated Olmstead plan for the upcoming year, outlining its commitment to providing inclusive, community-based services.
“People with disabilities have a right to the whole-person care and support they need to live within inclusive communities,” said Kelly Crosbie, director of the DHHS Division of Mental Health, Developmental Disabilities, and Substance Use Services, in a statement accompanying the plan’s release. “It’s our responsibility to ensure access to the community-based services that make this right a reality.”
While such plans are welcomed by Disability Rights North Carolina and other advocacy groups, concerns remain. Many believe these plans often lack specific details, enforceable deadlines, and the commitment necessary to implement real change. Without tangible timelines and accountability, blueprints risk becoming little more than promises on paper.
The dissatisfaction with North Carolina’s approach to community-based care led to the landmark Samantha R. v. North Carolina case, filed in Wake County Superior Court in 2017. After seven years of legal wrangling, the case is finally on the verge of settlement.
The lawsuit was filed on behalf of the parents of Samantha Rhoney, who struggled to find the services they needed to keep their daughter living safely at home. In 2015, after exhausting their options, the Rhoneys felt compelled to place Samantha in the J. Iverson Riddle Development Center in Morganton—a decision that resulted in a multi-year stay they deeply regretted.
In 2022, Superior Court Judge Allen Baddour issued a ruling that aimed to shift the paradigm. The decision would have forced the state to provide services to people with intellectual and developmental disabilities in the home settings of their choice. The ruling even prohibited new admissions into long-term care facilities by 2028, signaling a significant push toward community integration.
However, not everyone viewed this timeline favorably. Some families with loved ones in long-term care facilities expressed concerns that the impending deadline could threaten the stability of institutions they relied upon, potentially leading to closures and leaving them with fewer options for care.
In response, DHHS appealed Baddour’s ruling, leading to negotiations aimed at reaching a compromise that would provide more care options without forcing drastic, immediate changes.
On Wednesday, Disability Rights North Carolina and DHHS announced they had reached a tentative settlement that could pave the way for more inclusive, community-based services. The agreement, if approved by Judge Baddour, would represent a step toward greater choice and freedom for people with intellectual and developmental disabilities.
The proposed consent order establishes a two-year period during which DHHS must transition more individuals out of institutions and into community-based services, especially those who wish to return to their homes or live in community settings.
The waitlist for community-based services has ballooned to 17,530, according to a DHHS dashboard. Although the proposed settlement does not require the list to be reduced to zero, it does set concrete benchmarks. Specifically, DHHS must move at least 249 people out of institutional settings and into community-based care by June 2027.
To help achieve these goals, DHHS has committed to developing a comprehensive plan to bolster the workforce essential to delivering community-based services. This includes increasing hourly pay rates for direct care workers—a crucial step given the persistent staffing shortages that have plagued the system.
Earlier this year, DHHS introduced proposals to enhance training programs for nurses, behavioral health specialists, and other care providers. Still, they acknowledged that real progress hinges on legislative support and appropriate funding allocations.
To ensure accountability, the settlement includes detailed reporting requirements, performance benchmarks, and regular assessments. After the initial two-year period, both Disability Rights North Carolina and DHHS will review progress and recommend any additional steps needed to sustain and expand more care options.
“This proposed agreement marks the beginning of change, not the end,” said Emma Kinyanjui, legal director at Disability Rights North Carolina. “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.”
This evolving legal landscape highlights a critical juncture for disability rights in North Carolina. As the state moves forward, the focus must remain on ensuring individuals and families have the freedom and more care options they need to thrive within their communities, without the looming threat of unnecessary institutionalization.
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