A Family Resource for Youth with Brain Disorders
Amazing Grace Advocacy
Written by Gwen Bartley
Executive Director of Amazing Grace Advocacy
The frequently-used phrase “mental health system” seems to indicate there is a singular system in the U.S. that drives the diagnosis and treatment of mental health conditions. On the contrary, we have a myriad of complex, segregated systems that result in little success in treating these serious conditions. Some of the greatest dysfunction comes in the realm of pediatric mental health care.
When symptoms begin to surface in children, they most often appear as atypical negative behaviors. Parents are struggling at home, not knowing where to seek help. While school staff may alert parents about concerns, most school districts oppose making direct mental health referrals and avoid aiding parents in navigating this first step. Parents, intimidated by the process, cost, and stigma associated with a mental health diagnosis, typically don’t seek professional treatment until the child escalates into crisis. A cycle of misbehavior continues, leading to suspensions and eventually the school district pushes the child out with expulsion or the common practice of “homebound” programs. Schools do not want to be mental health providers, nor do they currently have the funding to do so. However, integrated mental health treatment in schools would be the most logical place with the highest impact.
Mental health services are covered by either Medicaid or private insurance, depending on the family, and the services covered are very different. Children (up to age 18) that have Medicaid have a distinct advantage in access to mental health services over children that have private insurance. Please refer to the additional statements regarding the distinct differences in Pediatric Mental Health coverages. The incidence of positive outcomes and stabilization is vastly greater and more sustainable for children served by Medicaid than those who have private insurance coverage.
Navigation of either of these systems is extremely difficult, especially at the onset of symptoms when parents are taxed by simply managing the challenges of the child. Mental health systems have a language and process that is foreign to the lay person; mistakes are frequently made, time is lost, and the child spirals deeper into the mental health crisis. Systems are siloed, policies are complex and unsynchronized.
One in five children aged 13-18 has or will have a diagnosable mental illness. Only half of these youth receive professional mental health treatment. The majority (68 percent) of the children who do receive services have fewer than six visits with a provider over their lifetime.
Mental illness often combines with additional factors such as adverse childhood experiences/trauma, Reactive Attachment Disorder (associated with some adopted children,) and co-existing disabilities. This makes it increasingly complicated to treat these children and achieve successful outcomes.
The overreach of protections like HIPAA and system policies have added to the barriers for parents to be proactive in seeking treatment for mental health symptoms in teens. In some hospital systems, patients as young as fourteen have the right to choose whether or not parents can access their records and share in decision making. While this is intended to help teens seek treatment they might not want their parents to know about, it is harmful in situations where a young person is in a mental health crisis and unable to make good decisions. Parents can’t pursue guardianship or power of attorney until the child reaches age eighteen, leaving a years-long gap in needed care. Even in the best situations, mental health providers, managed care organizations, private insurance companies, schools, pediatricians, and community-based services are not able to share information and work as a team without a plethora of releases being signed and shared. Each professional manages a small piece of the care while the families are left trying to juggle and balance all of the different, fragmented aspects of care.
Long term care for those with serious mental illnesses (schizophrenia, bipolar, schizoaffective, major depressive disorders) does not exist. Those identified with these illnesses often cycle through repeated short-term placements in hospitals and facilities or live at home despite a need for placement because of shortages of facilities and inability to pay or get insurance coverage. This cycle continues into adulthood, at which point homelessness, incarceration, and suicide become the reality for too many.
We must enforce the Mental Health Parity Act of 2013 and require commercial insurance companies to cover mental health treatment in the same way physical illness is treated. We don’t tell pediatric cancer patients that they can’t receive a bone marrow transplant because that level of intensive care is not covered. However, every day across this country, children are turned away and denied the lifesaving treatments they need to be well.
We need to create integrated case management in schools that is available to all students, regardless of insurance or Medicaid. These programs would give holistic attention to the child, family, and environmental factors. They would also provide transition planning and successful hand-offs to adult mental health services from the school when a child turns 18 to avoid gaps in care.
We must focus on accountability and appropriate training of all mental health service providers to deliver optimum quality of care and ensure positive outcomes for sustained mental wellness. We must create long-term care for youth that require continued high-level care to maintain safety.
We need a registry for youth with serious mental illness that carries the treatment record of a minor into the gun registry database once they’ve turned 18. This could be linked to those taking anti-psychotics through a pharmacy database or those who have been receiving intensive mental health supports as a minor. If the individual recovers and maintains stability for 10 years or more, they could be eligible for a comprehensive mental health evaluation that is maintained annually for them to have access to purchasing a firearm.
Children with mental illness are not always violent or unsafe; however, when they experience psychosis, they are no longer rational in thought or behavior. We must never forget that serious mental illness is a life and death condition; it has a ripple effect in families, communities, and our entire country. When ONE child goes untreated and enters psychosis without proper support and oversight, we are all in danger.
 This document cites statistics provided by the National Institute of Mental Health. www.nimh.nih.gov
Carie Bumbarger In Memory of Helen Sykes
Pat & Wendy Dudley
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Empowering Families raising Children, Teens and Young Adults with Brain Disorders
Leslie & Craig Berry
Children diagnosed with Brain Disorders may learn, behave and communicate differently; however their dreams, goals and purpose are no less important than any other child.
Amazing Grace Advocacy works to empower families in achieving safe and nurturing environments for their children to grow, learn and transition into adulthood with purpose and sustainability.
We believe "Every Life Has a Purpose" with enabling all individuals to discover and enjoy their qualities through support and opportunity.
Kenneth and Joellyn Padgett
Frank and Frances Bartley
Ted & Sharon Dupaski
Bill & Mollie Farber