This story was originally published by North Carolina Health News on Dec. 8. Story by Anne Blythe.
Disability Rights North Carolina and the North Carolina State Conference of the NAACP have joined forces to help children of color with disabilities in the state’s foster care program get more community- and home-based treatment instead of being “warehoused” in locked psychiatric facilities that can be dangerous.
The civil rights advocates filed a joint lawsuit on Tuesday in federal court in the Middle District of North Carolina against Kody Kinsley, in his role as secretary of the state Department of Health and Human Services, on behalf of at least four children, the court-appointed guardians tapped to represent their interests and others similarly situated.
The 74-page filing highlights a decade of problems that Disability Rights and the state NAACP contend DHHS has known about and failed to address. They claim more than 500 children a year in the ward of the state are housed in psychiatric residential treatment facilities, often many miles away from their families, schools and caseworkers familiar with their life stories.
When children with disabilities are confined to such facilities, disability rights advocates say, they suffer more longer-term consequences than if they were in home or community settings.
Many lose crucial connections with their parents, siblings and extended family. Some are more vulnerable to mistreatment, the lawsuit states.
“They are often confined to prison-like settings under the care of a poorly trained and understaffed workforce, where they are subject to broken bones, sprains, bruises, and dangerous physical and chemical restraints,” the lawsuit contends.
‘Can and must do better’
The complaint additionally states that the children “withstand 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. DHHS data from the previous fiscal year show that almost 50 percent of children sent to such places identified as Black, brown or “other.” U.S. Census data show that about a third of North Carolina residents are people of color.
Disability Rights contends that DHHS has long known about and cataloged abuse occurring at such facilities, but sends children in foster care to them nonetheless.
The lawsuit also notes that DHHS sent almost 40 percent of the children with disabilities in foster care to out-of-state facilities — some as far away as Utah, Missouri and Indiana — many hundreds of miles away from their caseworkers and families.
Such extremes, Disability Rights advocates say, put these children at a further disadvantage in their early lives instead of providing more wholesome care for them in communities, family or family-like settings near their schools and service providers that could lead to more success later.
“DHHS is failing hundreds of children with disabilities in foster care, warehousing them in dangerous, expensive, damaging institutions,” Virginia Knowlton Marcus, chief executive officer of Disability Rights North Carolina, said in a statement after the lawsuit was filed. “DHHS is obligated to provide these children the helpful support and care they need in their home communities. These children deserve and have the right to a family and place in our communities where they can meet their full potential.
“Instead, they receive institutionalization and irreparable harm to their childhood and wellbeing.”
A spokesperson for DHHS said Wednesday that the department had received and was reviewing the federal lawsuit.
“Regardless of this specific litigation, North Carolina can and must do better for children with complex behavioral health needs,” a DHHS spokesperson said in an email statement to NC Health News. “That’s why NCDHHS has and will continue to implement, propose, and advocate for real solutions.”
Fighting for rights in federal, state courts
The lawsuit was filed in federal court nearly a month after a Superior Court judge issued a far-reaching ruling in state court ordering DHHS to deliver services to people with developmental and intellectual disabilities in home and community settings.
DHHS has appealed the decision and filed a motion on Dec. 1 in Wake County Superior Court hoping to block parts of the order issued by Judge Allen Baddour while the state Court of Appeals reviews the case. The motion for a stay is set to be considered during a February hearing.
The lawsuit filed Tuesday in federal court touches on similar issues but 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 can be integrated into programs and activities appropriate to their needs in a community setting.
“DHHS’ failure to provide community-based, family-based housing and supports for Black children with mental health needs is cruel, irresponsible, discriminatory, and must be rectified,” Deborah Dicks Maxwell, president of the North Carolina NAACP State Conference, said in a statement after the lawsuit was filed. “North Carolina already rips Black children from their families and throws them into foster care at an alarming rate, a lasting trauma that the state compounds by its brutal use of institutional care. It is past time to fix this.”
Long wait lists, too few slots
Disability Rights NC and the state NAACP contend that DHHS spends $100 million annually on psychiatric residential treatment facilities in lieu of building and strengthening a community-based network for such children in need.
“While DHHS ostensibly offers an array of community-based placements and services, the availability of needed services is too limited, and DHHS does not ensure that children with disabilities in foster care can actually access existing services,” the lawsuit states.
Some of those details were brought to light after Disability Rights North Carolina filed the lawsuit in Wake County Superior Court in 2017 that led to the Nov. 2 ruling in the so-called Samantha R. case that disability rights advocates celebrated.
The Innovations Waiver, a state Medicaid program that makes it possible for people with disabilities to get state funding to receive care in their homes or community settings, was at issue in that legal challenge.
Samantha Rhoney, now 33, is the lead plaintiff in the lawsuit. She and her parents accused the state of not doing enough to provide home- and community-based support to residents with intellectual and developmental disabilities.
The legislature has underfunded the program for years. There are 16,000 more people waiting for home- and community-based services than state-funded slots available. The waitlist could take more than a decade to attend to unless state lawmakers allocate more funds.
The Baddour ruling gives the state 10 years to move all people with intellectual and developmental disabilities in institutional settings who are eligible for Innovation Waivers into the services of their choosing.
Though top DHHS administrators have asked the General Assembly to provide more funding for home-based and community programs, Kinsley said last week that he worried that Baddour’s order would lead to some North Carolinians losing options to care before enough resources had been built up in communities.
“While the department is deeply aligned with many aspects of that decision, I have grave concerns about keeping pieces of that decision that would limit choice for individuals and potentially push over a thousand, if not more, individuals in small community-based homes and other spaces out of those stable environments that their family members and they rely on every day, in a short period of time,” Kinsley said Nov. 30 when announcing the state’s plan to appeal.
Since then, the department has shared emails and other comments from family members of people with disabilities urging the state to appeal the Baddour ruling.
‘Denying them their childhood’
The lawsuit refers to studies and consultant reports that DHHS has amassed on the foster care system.
In 2020, according to the federal lawsuit, a consultant hired by DHHS found that “North Carolina spends a disproportionate amount of its resources on institutional and congregate care settings” and “spends more to serve individuals in congregate care settings than it spends on community-integrated services options.”
That problem was further exposed earlier this year when DHHS released a $60.1 million action plan for “Transforming Child Welfare and Family Well-Being.”
More children were coming into the state’s welfare program with complex behavioral problems, according to the report issued this past May.
The state acknowledged it could not always help the children as quickly as social workers and other caregivers preferred.
Because of a shortage of foster care spaces and available services, many children being removed from their homes in recent years have had to sleep in social services offices, hospital emergency rooms or local hotels while child welfare workers searched for temporary housing. That adds more trauma to an already traumatic experience, social workers and other child welfare workers say.
The federal lawsuit contends that children with disabilities in foster care who are housed in long-term psychiatric facilities are being short-shrifted on opportunities that non-disabled children get more readily. They often lack:
- Loving, supportive family-based settings;
- Trusted adults in their lives;
- Encouragement for chosen hobbies and passions;
- The development of independent living skills; and
- Educational, employment and social events that can lead to more successes in adulthood.
“In short, DHHS – the very agency that exists to support and protect these children – is denying them their childhood,” the lawsuit states.
Who’s fighting the fight
The lawsuit gives some details of the two girls and two boys leading the charge against the state. All are described as youth members of the state NAACP. They have been removed from family settings and either immediately or eventually sent to psychiatric residential facilities, where they are administered cocktails of psychotropic drugs.
One is a 14-year-old boy with an intellectual disability who is a member of the Lumbee Tribe of North Carolina. After being removed from his mother’s home in 2019, the state placed him in a residential facility in Raeford. There he sleeps in a room that has a green pad for a mattress, one pillow and a blanket with no mattress cover.
There is no furniture in his room, not even a place where he can keep private paper and documents. Staff there, according to the lawsuit, have thrown out things of importance to him.
Children in the facility have one common room in which they attend school, eat their meals, meet with visitors and socialize.
The teen has been bullied by facility staff who’ve called him a “crybaby” and other derogatory terms, the lawsuit alleges. He wants to live with his grandmother and play sports in the community, be able to go to the grocery store and take part in other adolescent activities while getting treatment outside a facility setting.
A 15-year-old African-American girl with post-traumatic stress disorder, a disruptive mood dysregulation disorder and attention deficit hyperactivity disorder first entered the foster care system as a toddler. She was adopted at age 3, then returned to foster care again as a teenager after her adoptive parents divorced and eventually abandoned her.
Though she is from Orange County, the teen has been in a residential facility in Leland since February. She has been recommended for placement in a group home but the lawsuit alleges she has “lingered” in the residential facility because there is no available slot in the kind of community-based facility suggested for her.
A 13-year-old girl from Montgomery County diagnosed with post-traumatic stress disorder, attention deficit hyperactivity disorder and a mood disorder has had a childhood marked by instability. During her five years in the foster care system, she has been placed in different settings more than 20 times including three of which have been in “highly restrictive” psychiatric residential facilities.
In the spring, when there were no open spots for foster care, the girl had to sleep for several days in a Department of Social Services office. Cots were brought in. Shower facilities were in another building.
Upon the filing of the lawsuit, the teen was in a psychiatric residential facility in Jacksonville, N.C., where she has been since July and subject to physical restraints at one point. The sparse communal space at the facility makes it difficult for the teen to develop adolescent friendships, to spend time coloring, drawing, listening to music and playing cards, her hobbies and coping mechanisms, the lawsuit contends.
DHHS has cited the staff at the Jacksonville facility, according to the lawsuit, for failing to appropriately supervise children. Suicide attempts, fighting and serious injuries have occurred there, the lawsuit contends. The girl has reported painful bullying and sexual harassment by her peers, the lawsuit alleges.
A 15-year-old boy diagnosed with post-traumatic stress disorder, a mood disorder, borderline intellectual functioning, attention deficit hyperactivity disorder and conduct disorder has been through more than 50 placements since he was removed from his home. His childhood has been marked by instability and alleged domestic violence and physical abuse.
He has been in at least seven different psychiatric residential facilities, including one in Kinston where he has been since April.
On at least two occasions, the child suffered such severe head injuries from physical abuse in the facilities that he has been airlifted to a major trauma center for treatment and rushed to an emergency room on another occasion, ostensibly for his safety, according to the lawsuit.
The children and others who filed the complaint against Kinsley seek class action to represent children with a mental impairment who are in North Carolina foster care or could be at risk of institutionalization.
“This case seeks to stop DHHS’s inhumane and unlawful system-wide failures that harm the very children it exists to support and protect,” Marissa C. Nardi, lead counsel for Children’s Rights, said in a statement. “Children belong with families, not in facilities. DHHS must be held accountable for getting children out of these dangerous places once and for all.”
Forging a new path
On Wednesday, DHHS staff outlined some of the changes the department has made to do more for children with disabilities while also acknowledging much more work needs to be done.
- Establishing a new Division of Child and Family Well-Being dedicated to meeting whole child and family well-being that includes behavioral health prevention and treatment.
- Proposing a statewide Children and Families Specialty Plan within Medicaid managed care to ensure foster children receive integrated physical and behavioral health services with specialized care management
- Releasing a coordinated action plan laying out strategies to address the urgent crisis of children with complex behavioral health needs who come into the care of child welfare services; and advocating for greater investment in child welfare, behavioral health, and regulatory oversight workforces.
“The work necessary to keep more children out of crisis and support those in crisis in the least restrictive setting that meets their specific needs will require significant financial investment from the North Carolina General Assembly,” DHHS said in its email statement to NC Health News. “Today, North Carolina ranks 36th of 50 states in per-child spending on child welfare, and 42nd in prevalence of mental illness relative to access to treatment for youth mental health.
“However, it will take more than just funding to realize our shared goal that every child and family has what they need to cope, repair and heal from trauma and complex behavioral health challenges,” the statement continued. “North Carolina’s many systems impacting children and families must agree on a shared agenda and defined accountability.”
That will require a combined effort by the state, local departments of social service, and the local mental health management agencies, known as LME/MCOs, paid by Medicaid to coordinate and monitor care and services for people with mental health challenges, intellectual and developmental disabilities and substance use disorders, the courts, behavioral health providers and many others, according to DHHS.
As the state works to lay out a new path forward, according to DHHS administrators, there must be more:
- Quality placement options for children with complex behavioral health needs.
- Kinship and foster families, acute care options and high-quality, therapeutic residential facility placements to meet the growing demand.
- Access to quality community-based crisis, treatment and prevention services in each of North Carolina’s 100 counties.
- Staff and better pay for workers who serve these children through local and state DSS agencies, service providers and facilities.
“NCDHHS remains committed to leading a transformation for the health and wellbeing of North Carolina’s children and families,” the DHHS email statement said. “We eagerly welcome working with policymakers and other stakeholders to make real progress for those we serve.”
North Carolina Health News is an independent, non-partisan, not-for-profit, statewide news organization dedicated to covering all things health care in North Carolina. Visit NCHN at northcarolinahealthnews.org.
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