At just 5 years old, C.C. was suspended from school for destroying property and disobeying her teachers.
Diagnosed with attention-deficit/hyperactivity disorder (ADHD), she found it difficult to pay attention or control her impulses. Soon afterward, she was diagnosed with several other forms of mental illness, including bipolar disorder, conduct disorder, unspecified depressive disorder and another malady that consistently gives her the irresistible urge to pull out her hair. C.C. enjoys suspense novels, and is an honor student.
Now 13, C.C. is in dire need of intensive mental health services that the state of Louisiana, by law, is supposed to provide through Medicaid but has not done so. C.C. has spent a significant amount of her childhood cycling in and out of psychiatric institutions, and most recently, was institutionalized for a 100-day stay as far away as 300 miles from her home.
C.C. is among the plaintiffs in a class-action lawsuit the SPLC and its partners filed today against the Louisiana Department of Health (LDH). The suit follows a multi-year investigation that the SPLC led into the “extraordinary and ongoing failures of accessibility of mental health services for our state’s Medicaid-eligible youth under 21,” according to the lawsuit.
“C.C.’s story is tragically typical: She represents the kind of child whose unmet mental health needs push her into institutions and the juvenile justice system,” said Cheyenne Blackburn, outreach paralegal for the SPLC’s children’s rights practice group. “Because of her mental health needs, and the state’s failure to address them as required by law, she has been forced into constant removal from her home due to behaviors arising from her disability. We are suing the Louisiana Department of Health to ensure that C.C. and other Medicaid-eligible children with mental illnesses get the services they need from the state, instead of being taken away from their families and communities, a traumatic experience within itself that oftentimes only further exacerbates their mental health conditions.”
Failure to provide services
The lawsuit names Rebekah Gee, secretary of the Louisiana Department of Health, and the health department as defendants. The suit states that the state health department has, by its own admission, failed to provide intensive home and community based mental health services for Medicaid-eligible children with mental illnesses or conditions – even though federal law requires it – or that it has provided the services in such an inconsistent way that they are practically nonexistent.
The SPLC filed the lawsuit with its partners at the National Health Law Program (NHeLP); the National Center for Law and Economic Justice (NCLEJ), the Advocacy Center of Louisiana; and O’Melveny & Myers LLP.
“The LDH’s failure to provide these intensive home and community-based mental health services, as required under the Medicaid Act, has detrimental consequences: Youth with mental illnesses are unnecessarily segregated from their homes and communities and hospitalized or placed in psychiatric institutions for mental health treatment, in violation of federal disability laws,” said Sophia Mire Hill, staff attorney for the SPLC’s children’s rights practice group.
The suit seeks a court order forcing Louisiana to create a statewide, integrated and coordinated system of mental health care that is geographically accessible to Medicaid-eligible young people with mental health needs and that is delivered by qualified mental health professionals.
The suit specifically seeks mental health services that are implemented along a continuum to prevent crises from occurring, and that crisis services, including crisis intervention, crisis stabilization, and mobile crisis services are targeted to the needs of young people who have intensive mental health needs.
All of the plaintiffs in the lawsuit are children with mental illnesses who have intensive mental health needs that are not being met; or, they have experienced unnecessary institutionalization, away from their homes and communities, resulting in dire consequences for them and their families.
Louisiana’s repeated failure to meet its obligation to provide Medicaid-mandated mental health services to the young plaintiffs has led the children to deteriorate in their homes, to cycle in and out of traumatic and restrictive psychiatric facilities, or to become inappropriately and tragically involved in the justice system, according to the lawsuit.
In 2012, Louisiana divided its health care system for all Medicaid beneficiaries into various branches. The health department contracted with private organizations to provide physical health care services, and tasked a state-run organization called the Louisiana Behavioral Health Partnership (LBHP) with providing mental health services.
However, between 2014 and 2016, the health department dissolved the LBHP and moved most mental health services to the multi-member private system. Health department officials apparently hoped that this move would allow for better coordination of physical and mental health care services, enabling providers to treat the whole patient.
Unfortunately, this hope was not realized, and Louisiana was left with a privatized, hodge-podge system plagued by inadequate provider networks and nonexistent crisis services – or more plainly, a system that cannot serve the neediest children.
Over and over again during the course of the SPLC’s investigation, families, providers, educators, advocates, lawyers, and even health services employees reported that Louisiana’s system of crisis services for youth is not just inadequate; it is mostly nonexistent. What’s more, the investigation revealed the core reason why the system is in a state of such failure: deregulation and privatization.
The promise of a more coordinated, robust mental health system was never realized.
In reality, the SPLC’s investigation found, most children in Louisiana live in communities where “crisis services” do not exist, or where law enforcement officials serve as crisis providers, inevitably turning a mental health crisis into a legal one, the lawsuit states.
The lawsuit is the SPLC’s first Medicaid case in Louisiana that focuses on intensive care coordination, crisis services and other intensive home and community-based mental health services. The SPLC decided to focus on such services because the failure to provide them, as required by law, is often the difference between a child being institutionalized and pushed into the school-to-prison pipeline versus a child functioning, learning and thriving in society.
When left untreated or not given timely treatment, mental health issues may contribute to children’s learning difficulties as well as behavioral issues; strained family, peer and social relationships; and justice system involvement.
These untreated mental health issues may also lead children later in life into unemployment or underemployment and incarceration. What’s more, individuals with mental health conditions have an increased risk of chronic medical conditions and a life expectancy that is 25 years shorter than those who do not have a mental health condition, according to the lawsuit.
A national crisis
The lack of quality mental health treatment for children in Louisiana is part of a national crisis, according to the American Psychological Association. As many as 20 percent (about 15 million) of America’s youth have a mental or emotional illness. Of those, only 20 percent receive any mental health treatment. Of those who do receive mental health treatment, only 7 percent receive the kind of treatment they need. This means that only about 84,000 children, or only one out of every 71 children in need, receives appropriate treatment each year.
Even within that small number of people, “appropriate treatment” is not provided equitably across racial lines. Thirty-one percent of white youth across the country receive mental health services, compared to only 13 percent of youth of color.
In Louisiana, the total number of children and youth with disabilities exceeds the national average: 27 percent of Louisiana’s youth – approximately 265,274 children between the ages of 2-16 – are diagnosed with a behavioral, emotional, or developmental disability, compared to 21 percent nationally.
Yet while Louisiana has a higher concentration of youth with mental illnesses than the national average, it does not serve them as well as other states do. Louisiana consistently ranks lowest among all the states in access to mental health care, even though Louisiana receives federal Medicaid funding like all the other states. This is not only detrimental to youth in need of intensive home and community-based mental health services, but it is also a drain on the state’s economy: Research shows that providing these services in the home or community is more cost-effective than providing them in an institutional setting.
Medicaid is a jointly funded federal-state program. Through it, the federal government provides financial assistance to states, which then add some additional funds and devise their own systems to provide health care for individuals in need. Participating states must submit a “plan for medical assistance” (a State Plan) to the U.S. Centers for Medicare & Medicaid Services (CMS), the agency that administers the federal Medicaid program. The plan must describe the nature and scope of Medicaid services, including mental health services for youth and adults, that the state will provide.
However, Louisiana has failed to implement a statewide, accessible public behavioral health system of intensive home and community-based mental health services. This impacts approximately 47,500 children and youth under the age of 21 who have been diagnosed with a mental illness or condition and who require such services.
This lack of services is evident in the case of plaintiff E.E., who suffers from depression, bipolar disorder and attention-deficit/hyperactivity disorder. E.E., who lives in a rural part of the state where the mental health care he needs is inaccessible, is often sent home from school in the back of a police car, a traumatizing practice that could be entirely avoided through intensive home and community-based mental health services. Unable to access IHCBS, E.E.’s condition continues to deteriorate, jeopardizing his dream of one day traveling the world.
A doctor recommended that the 12-year-old boy get help from an in-home therapeutic counseling service, but the state health department did not ensure that E.E.’s family had the resources needed to secure this treatment. Without access to case managers or coordinators to navigate the system, many families are effectively denied treatment.
“Children with mental illnesses deserve to have the treatment they need, and that is required under federal law. Instead, failure to provide mental health services results in unnecessary juvenile justice involvement or institutionalization,” said Victor Jones, senior supervising attorney for the SPLC’s children’s rights practice group. “This must stop. Children deserve the dignity of receiving quality mental health services that allows them to lead healthy and productive lives in their homes and communities – and it is required under the law.”
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