Health Law Advocates Inc. is a public-interest law firm affiliated with Health Care For All, a statewide consumer advocacy organization that promotes health care reform in Massachusetts. Founded in 1996, HLA is committed to ensuring universal access to quality health care in Massachusetts, particularly for those most at risk due to such factors as race, gender, disability, age or geographic location. HLA’s mission is to provide legal representation to vulnerable Massachusetts residents who are at or below 300 percent of the federal poverty line who have been denied access to health care.
The surgeon general has reported that 4 million children and adolescents suffer from a major mental illness, and that less than 20 percent of those children receive the mental health treatment or services they need. HLA has learned that Massachusetts is not immune to this problem and is failing its children with mental illnesses.
HLA has witnessed firsthand the difficulties families have accessing services when their children are mentally ill. There are numerous barriers that prevent families from getting their children much needed mental health services. Among them are the dearth of child psychiatrists, psychologists and social workers; the perception that treatment is ineffective; the stigma associated with mental health services; and the cost of treatment. In response to this need, HLA created the Children’s Mental Health Access Project. The project’s goal is to use HLA’s broad experience in legal advocacy to expand and improve the delivery of mental health services to children throughout Massachusetts. To achieve this goal, HLA has developed a multi-pronged approach: (1) Provide direct representation to children who are being denied access to mental health services; (2) Establish a network of pro bono attorneys who will accept children’s mental health access cases and provide those attorneys with training and support; and (3) Identify systemic problems that inhibit access and challenge them through class action lawsuits and other broad legal strategies.
As part of the project, HLA represents children with unmet mental health needs who appear in juvenile court in Fitchburg and Dudley, Massachusetts. These children evidence the enormous social cost of not treating childhood mental illness, and the simple fact that children whose mental illnesses are not treated often enter and remain in the juvenile justice system and then later become embroiled in the adult criminal justice system. Indeed, there is a high rate of major mental illness among children in the juvenile justice system, and most of the children so afflicted are not receiving services. One study found that 20 percent of those in the juvenile justice system had a major mental illness or serious emotional disturbance, and another study reported that between 40 percent and 50 percent of the children in the juvenile justice system have some form of mental illness.
Judge Luis Perez, who presides over the Worcester County Juvenile Courts, has recognized this significant problem. He reports that many of the children who appear before him in the juvenile court are in need of mental health services, but they lack legal representation to help them obtain the services they are entitled to under state and federal laws. Although their attorneys are zealous advocates, they simply do not have the expertise in health law or experience working with state agencies to ensure that the children they represent receive the mental health services they need. As a result of their unmet mental health needs, many of these children end up in the custody of the Department of Social Services (DSS) or incarcerated in a Department of Youth Services (DYS) facility. To keep these children in their homes rather than in the custody of the commonwealth or incarcerated, two things are critical: (1) the mental health care services themselves, and (2) advocates to help the children and their families access those services. Perez approached HLA about these issues, and together, we created the Fitchburg and Dudley Juvenile Court Projects as part of the larger Children’s Mental Health Access Project.
Juvenile Court Project — mental health guardians ad litem
HLA staff regularly attend juvenile court sessions in both Fitchburg and Dudley. By maintaining a presence in those courts, HLA has become known to the attorneys and advocates (as school counselors and DSS social workers) who appear before the juvenile courts, as well as the probation officers and court personnel. Juvenile court judges now often appoint an HLA attorney as guardian ad litem (GAL) when a child who may have unmet mental health needs appears in court on a delinquency matter or after a Child In Need of Services (CHINS) petition has been filed. The GAL’s charge is to work with the child’s attorney and the other professionals involved in the child’s life to determine if there are unmet mental health needs, and if so, what those needs are and who should be providing those services. After making those determinations, the GAL works to make sure the services are actually provided to the child.
The GAL, who is not paid, does not represent the child in the delinquency or CHINS matter and does not represent the parents or guardians. Instead, the GAL is responsible to the court to ensure that the child’s mental health needs are met. This division of responsibilities ensures that the GAL’s focus is on the best interests of the child in terms of mental health services, and allows the child’s attorney to focus on the legal issues before the court. Although HLA attorneys are not mental health clinicians, they are well experienced in making sure mental health services are in fact provided, and in a timely manner. HLA reports to the court not only on what services are needed, but also what progress is being made in getting those services to the child.
The project started in the Fitchburg Juvenile Court in 2005, expanded to the Dudley Juvenile Court in September 2006 and has achieved positive results. One indicator of the success of the project is that the attorneys who regularly appear in those courts and have seen the results HLA has obtained have begun requesting that those courts appoint a mental health GAL when they have a client with unmet mental health needs.
Using health care laws to assist children in the juvenile justice system
The children HLA has represented have a variety of unmet mental health needs, and the strategies for meeting those needs also vary. The premise underlying HLA’s work is that children who are mentally ill must get appropriate, timely and effective mental health services. To reach this goal, HLA negotiates with private and public insurers, state agencies that work with children, such as DSS and the Department of Mental Health (DMH), and mental health care providers.
Public health insurance
Children who have health insurance, whether public or private, are entitled to an array of mental health services. However, many families are not aware of their children’s rights and are not aware of how to advocate to ensure the insurers provide covered services. HLA has expertise in both public and private insurance matters and has successfully used that expertise to benefit children in the juvenile justice system.
Children who are on the commonwealth’s Medicaid program, called MassHealth, have a very broad entitlement to medically necessary mental health services. There is a federal mandate called Early, Periodic Screening, Diagnostic & Treatment Services (EPSDT) that requires that states that accept federal Medicaid funds must provide all Medicaid members under the age of 21 with certain services (including vision and dental) that are medically necessary to correct or ameliorate physical and mental illnesses discovered by the screening services, and provide them in a timely manner. This is a wide-reaching mandate, and if a child who appears before the juvenile court has MassHealth and is not receiving needed mental health services, HLA attorneys pursue those services immediately and aggressively.
In order to comply with the EPSDT mandate, MassHealth enacted a regulation that states that if a child needs a medically necessary service that is not already specifically included as a covered service under MassHealth regulations, a provider may submit a request for prior authorization for the service. Unfortunately, many providers are unaware that they can request payment for a service that is not listed, so HLA helps to make them aware of this regulation and encourages them to submit such requests.
Private health insurance
Private health care insurers also must provide a range of mental health services and do so in a reasonable time period. However, getting services in a reasonable time period is one of the biggest hurdles for children with mental illness, because there are very few providers who specialize in treating children, and even fewer of these accept health insurance of any kind. In fact, months-long waiting lists are common for children seeking psychiatric services. Because children in crisis cannot wait that long, HLA attorneys fight to break down these barriers.
For example, “CG,” a 15-year-old girl, appeared before the juvenile court on a CHINS petition brought by her school after she had been repeatedly absent. CG had become severely depressed and rarely left her room at home. She would not attend school, socialize with her friends or participate in family life. Everyone was concerned for her safety and well-being and agreed that she needed to see a psychiatrist experienced in treating adolescents suffering from depression. CG’s insurer provided the family with a list of six psychiatrists who purportedly treated adolescents. However, of the six, one no longer accepted that insurance; two were not accepting new cases; two did not treat anyone under 18 years of age; and the last one had a waiting list of eight months. CG’s parents put her name on the long waiting list, began waiting and worried. It was at this stage that CG appeared in juvenile court and an HLA attorney was appointed as GAL. The HLA attorney contacted CG’s insurance company and convinced it to request that one of the psychiatrists who was not accepting new cases agree to see CG. Within two weeks, CG had seen the psychiatrist and was making significant, positive strides.
Had CG’s insurer been unable to find a psychiatrist in its network willing to treat her, HLA would have insisted that the insurer agree to pay an out-of-network provider to work with CG. There are several legal arguments that can be used in such negotiations. The Massachusetts Health Insurance Consumer Protection statute and the Massachusetts Mental Health Parity Law require that providers offer, on a nondiscriminatory basis, adequate access to a full range of services for mental health needs. Requiring a deeply depressed child to wait eight months before seeing a psychiatrist likely does not comply with this requirement. Also, an insurer that holds itself out as having an extensive network of providers, when in fact none of those providers are accepting new patients, may be engaging in an unfair and deceptive business practice under M.G.L. Ch. 93A.
Many, if not most, of the children who appear in juvenile court do not have health insurance. Instead, they receive mental health services through a state agency, most often DSS. HLA attorneys regularly help children and their representatives navigate the bureaucracies of the state agencies. The greatest barrier to getting help through state agencies is navigating the system itself. Although DMH would appear to be the agency most likely to help children with mental illness, very few children are actually receiving adequate services through DMH. Even a child eligible for DMH services is not entitled to those services unless DMH determines that the child cannot receive similar services from another source (e.g. a private insurer, DSS or the child’s school). In addition, DMH services are subject to funding on a geographic basis, so even if a child is eligible and needs the services, DMH might not have services available in that child’s location. In several such instances, HLA attorneys have pushed DMH to ensure that the eligible child actually receives the services he or she needs.
Many more families turn to DSS, rather than DMH, for assistance with their mentally ill children. With DSS, the difficulty is not obtaining eligibility for a child, but getting him or her the appropriate services, which is highly dependent upon identifying the mental illness from which the child suffers. The following example helps explain this difficulty.
Children who appear in juvenile court pursuant to a CHINS petition are often placed in the custody of DSS. The DSS social worker assigned to a particular child’s case must create a service plan describing in detail the tasks to be undertaken and the services to be provided to either strengthen the family unit, provide an alternative permanent home for the child or enable a mature minor to live independently. But DSS’s regulations do not require any type of mental health evaluation, let alone a full diagnostic evaluation. The only circumstances under which DSS is required to conduct a specific diagnostic evaluation are when DSS places a child who has sexually abused someone or committed arson in a foster-care home.
Without a mental health evaluation, the accuracy of any diagnosis is dubious. And, without an accurate diagnosis, DSS cannot, and frequently does not, identify the appropriate placement or services for a child in its custody. This means that families which have turned to the court and DSS through the CHINS process to obtain necessary mental health services for their children have no assurance that DSS will recognize the need or provide the services.
The details of a recent case elucidate well this problem. An HLA attorney represented “RC,” a 14-year-old girl who had been in DSS custody for more than six months at the time of the appointment. DSS took custody after RC assaulted her mother during a family therapy session, and then moved her from one failed placement to another. Each placement failed because of RC’s behavioral issues. RC is mentally ill, but instead of recognizing that her behavioral problems stemmed from her mental illness, a DSS social worker assigned to RC’s case overlooked her mental illness and stated repeatedly, both in juvenile court and in team meetings, that the problem with finding a stable placement for RC was entirely RC’s fault.
When RC had first appeared in juvenile court on a CHINS petition, Judge Perez ordered the Worcester County Juvenile Court Clinic to evaluate her. The clinician recommended that she undergo an intensive diagnostic evaluation and predicted that the evaluation would conclude that RC needed a long-term placement in a therapeutic residential setting. Unfortunately, DSS ignored the clinician’s recommendation. After RC bounced from one foster home to another, DSS sent her back home to her biological mother, although there had been no improvement in RC’s behavior. RC was then charged with assault and battery stemming from another fight, and ended up in the custody of the Department of Youth Services. The HLA GAL assigned to RC encouraged DSS to conduct psychiatric diagnostic evaluations in order to develop a long-term treatment plan. Eventually, the GAL’s persistence paid off, and DSS arranged for the evaluations. Once the evaluations were completed, it was clear that RC needed intensive therapeutic services and a focused residential program. When she was released from DYS custody, DSS placed her in an excellent community group home with therapeutic services on-site. RC is now doing very well in that placement.
In RC’s case, as in the case of many children in DSS custody, once the diagnosis was made, there was no debate about what kind of placement and services were needed. However, without the intervention of an HLA attorney, RC likely would have continued to bounce around from foster care to shelter care to DYS and back again, repeatedly found herself in trouble with the law, and never received the care she needed.
To help RC, HLA needed to persist with one agency until the agency gave the child the services she needed. In many instances, however, children need help navigating among several different agencies. In those cases, it is vital that the family have the assistance of an attorney who is familiar with the resources and eligibility requirements of all the relevant agencies. An attorney who understands health law and state agency regulations can bring all the potential providers to the table to help get the child all the services to which the child is entitled. Working with each service provider separately likely will not give the child as comprehensive a service plan as working with all the providers in a unified way and pulling together services from the different sources.
Children with mental health needs face a variety of obstacles to getting proper and effective services. Even when services are available, without an advocate who is familiar with the laws and regulations governing the various service providers, a child may not receive the appropriate services, or receive them soon enough to prevent dire consequences, such as progressively worsening mental illness, failure in school and incarceration. HLA’s Juvenile Court Project has successfully broken down barriers for a number of children. As we reach out to additional courts and train other attorneys to represent children with mental health needs, we hope that more children will receive much-needed mental health treatment.