by Elise Resnick, NAMI Public Policy Manager, and Darcy Gruttadaro, J.D., Director, NAMI Child and Adolescent Action Center
To see the complete report click here.
In June, the NAMI Policy Research Institute (NPRI) released a Task Force Report on Children and Psychotropic Medications. The task force that NPRI convened to examine this complex issue consisted of national experts in children’s mental health and health care, NAMI state and affiliate leaders, consumers and family members, and national staff members. It focused on legislative and policy actions, often based on misinformation and ideological agendas, that threaten to restrict access to potentially effective treatments for children.
The state of children’s mental health constitutes a public health crisis in this country. Currently, approximately 80 percent of children and adolescents with mental illnesses fail to receive treatment or services for their illnesses. This crisis will likely worsen in the absence of immediate action because the prevalence of mental illnesses in children and adolescents in our nation is on the rise. Furthermore, children and families face enormous barriers in attempting to access mental health services, and there is a shortage of professionals trained to treat children and adolescents with mental illnesses.
The children’s mental health "system" is fragmented, with primary care and mental health providers, child welfare systems, and juvenile justice systems providing services. These systems most often have different eligibility requirements and fail to communicate or coordinate services for children and families. This fragmentation leads to an overall lack of accountability and acts as a tremendous barrier to families attempting to access mental health services.
We now know from science that reaching children with mental illnesses early with appropriate treatment significantly improves their long-term prognosis. Conversely, the failure to provide treatment often has tragic and unfortunate consequences.
The NPRI task force considered the overall state of child and adolescent mental health care in the deliberations and discussions related to the use of psychotropic medications for children. Most of the psychotropic medications used for children are prescribed "off label" or without FDA (Food and Drug Administration) approval for use with children. The task force discussed the off-label use and the reality that medications can be lifesaving for some youth.
After careful deliberations, the task force developed four recommendations to guide policy, legislation, and research. A summary of those recommendations follows:
1. The National Institute of Mental Health (NIMH) must make research on early onset mental illnesses and the use of psychotropic medications in children a priority and increase funding accordingly. On this point, the NPRI Task Force on Serious Mental Illness Research has issued a separate report noting that for children and adolescents, there is "little correlation between what treatments are known to work and what is actually implemented in the mental health care system" (Roadmap to Recovery and Cure, February 2004).
2. One size does not fit all when it comes to treating mental illnesses. All children and adolescents with mental illnesses must have access to evidence-based assessments and interventions (EBI) and quality care. The EBI system should require clinicians to continually improve care by using the most current evidence and research to make decisions about the most appropriate medication and treatment on an individualized basis.
3. Families, child-serving professionals, and other stakeholders must receive information and education about the diagnosis and treatment of early onset mental illnesses. This should include information about the early warning signs of these illnesses and the appropriate use of psychotropic medications for children:
Psychotropic medications for young children should be used only when anticipated benefits outweigh risks. Parents should be fully informed and decisions made only after carefully weighing these factors. Children and adolescents must be closely monitored and frequently evaluated as the side effects common to some medications can be particularly difficult for children. At the same time, psychotropic medications can be lifesaving.
4. Policymakers generally should not interfere with the right of access to treatment, with the patient-provider relationship, or with the promotion of partnerships for treatment between parents, providers, and other child-serving professionals. Any legislative or regulatory consideration related to the use of psychotropic medications for children and adolescents must be guided by science. Action should be taken only after testimony based on sound scientific research is obtained from qualified and well-recognized medical and mental health professionals.
The task force focused on the pressing need for more research on early onset mental illnesses. It is critically important that families and providers work together to develop a treatment plan that will meet the needs of the child and family. Sound clinical practice calls for children to be closely monitored, especially when they are first put on medications and when medications are changed or combined.
Children and adolescents represent our nation’s hope for the future. Mental illnesses, like all childhood illnesses, should be detected early, and children should receive effective and appropriate care targeted to their individual needs. Families must be informed about treatment options and treated as equal partners on the treatment team.
Research and science must help inform decisions about treatment. We must work to protect children from harm, while also ensuring that those with mental illnesses receive timely and appropriate treatment interventions. The recommendations in the task force report are designed to help inform public policy and reform systems of care to be more responsive to the needs of children with mental illnesses and their families.
To see the complete report click here.