Removing Barriers To Care for Youth

I have been writing about encouraging trends in mental health (and substance abuse) treatment for children and adolescents for the past several weeks.  Most notably, the evolution of Adverse Childhood Experiences (ACEs) screening/assessment information and Trauma Informed Care protocols gives new hope for the most vulnerable among us.

But even as I celebrate these advances in the way we understand and care for kids who suffer and struggle, the systems which would bring them relief continue to slowly (painfully) creep along, stall out, and then start to crawl a little more.

The good news that we have developed incredible tools, scientific breakthroughs and individualized treatment models which offer a brighter life for untold thousands of children is tempered by legislative and societal hesitation to embrace and fund them for delivery.

Slow and Steady May Win the Race...But At the High Cost of Human Suffering

Consider how long it has taken for us to offer mental health and substance abuse treatment services to children and adolescents at a level similar to other illnesses.  In 1996 Congress passed the Wellstone/Domenici Mental Health Parity Act (MHPA) which basically asserts that insurance companies cannot charge more for mental health/substance abuse than medical/surgical coverage when (or if) it is offered in the benefit plan.

It was not until 2008 that The Mental Health and Addiction Parity Rule (MHPAEA) was passed to fill in obvious gaps. MHPAEA requires health insurers and group health plans to provide the same level of benefits for mental/substance use treatment and services that they do for medical/surgical care.

Finally, on March 29, 2016 the Final Parity Rule related to MHPAEA  was passed.  It requires Medicaid and Children’s Health Insurance Program (CHIP) managed-care plans to cover mental health and addiction treatment at the same level as medical and surgical care.  It has taken 22 years to get to this point.  And it’s still far from perfect. States have the authority to limit and restrict benefits.

While states like Texas have stepped forward to fully fund their programs others have not.  Insurance companies continue to deny coverage and to treat substance abuse disorders (SUDS) and mental illness (MI) as if they were non-essential.  Managed care companies fight providers every step of the way as services are attempted to be provided for kids who suffer.  The ideal of the Final Rule was to offer the same quality of comprehensive care to SUDS/MI as is offered to diabetes patients (including home health care benefits).

That just is not happening even though a nearly flawless model is provided by American Society of Addiction Medicine (ASAM) Placement, Continued Stay and Discharge Criteria which individualizes and guides treatment based on the severity of illness.

Charting a Way Forward

In 1989, I was chosen as one of the professionals that would help develop the ASAM guidelines for children and adolescents.  Dozens of us met in Cleveland, Ohio with the National Association of Addiction Treatment Providers core group.  We were challenged with the task of creating a system which would provide individualized treatment protocols for kids who were struggling with SUDS and dual diagnosis MI.

The plan was then coordinated with a similar adult model.  In 1992, ASAM unveiled the final draft to government officials, insurance providers and treatment professionals of every stripe in Atlanta.  We believed that we were ending a one-size-fits-all approach to these illnesses with a comprehensive one which truly addressed the needs of the individual patient/client.  It was an exciting time and universally accepted as the new Best Practice.

Unfortunately, most everyone went back home and continued the same old ways of operating.  A few of us made major programmatic changes and the results were incredible.  But mostly, we had just given insurance companies more efficient ways of denying coverage. Twenty years after the Atlanta unveiling, I ran into Dr. David Mee-Lee, MD who was one of the originators of ASAM at a conference.

We shared some reminiscences and I asked him what he was presenting.  He sighed, telling me he was promoting the use of the ASAM Criteria remarking; “After 20 years they still don’t get it…but they will.” David has the patience of Job.

Many Factors Influence the Underutilization of SUDS/MI Services by Parents and Children.

Despite the Final Rule of The Mental Health and Addiction Parity Act (MHPAEA), Medicaid and Children’s Health Insurance Program (CHIP) making it possible for people from all socio-economic levels to access mental health and substance abuse services for children and adolescents, the American Academy of Child and Adolescent Psychiatry (AACAP) continues to estimate that only 15% to 25% of children with psychiatric disorders receive specialty care.

Furthermore, The Department of Health and Human Services reports that only 6% to 8% of kids who could benefit from alcohol treatment, and 9% to 11% of those who could benefit from drug treatment are able to access treatment. Substance Abuse and Mental Health Services Administration (SAMHSA) informs us that;

  • An estimated 3 million U.S. children ages 12 to 17 had a substance use disorder in 2014.
  • About 1 in 10 kids ages 12 to 17 (11.4%) had a major depressive episode (MDE) in the past year. Among adolescents with MDE, only 41.2% received treatment or counseling for depression in 2014.

Insurance Companies, HMO’s and Managed Care continue to deny coverage based on the same levels provided to medical/surgical benefits. According to a 2017 column in the conservative Chicago Tribune, about 59 percent of providers in Illinois surveyed said Medicaid managed care organizations “always” or “often” denied coverage for inpatient treatment for addiction and mental health issues during the past year.

Gatekeepers to Treatment

Special patient advocate groups have had to be formed to help consumers fight the adversarial benefit gatekeepers. A friend of mine who works in the insurance industry told me that “We still hire people to say “No” when behavioral health claims are first received regardless of circumstances. Usually people won’t appeal and the company is saved millions.”

The vast majority of SUDS/MI treatment providers still offer consumers the same kind of treatment they were offering three decades ago…usually at higher costs than ever to payors.  I recently called a local inpatient treatment facility which only provides care for those who have health insurance or can afford to pay out-of-pocket.

Their program neither offered trauma informed care nor used ACEs assessments.  It was basically a 12 Step Recovery based program with daily group and individual counseling sessions even though it described “every service we provide is designed to produce the most clinically appropriate solutions to the serious problems facing our patients.”

That said, Memphis is a leader in providing care to kids who suffers SUDS/MI at little or no cost to consumers.  There is a long- term inpatient facility and community based outpatient organization which admit and serve children readily.  Treatment protocols could be more current, but they are forging ahead to meet critical needs unlike any others I have known.

Other factors which are affecting the ineffective delivery of services include stigma, cultural barriers, access to region-wide rather than local distribution of providers, and a shortage of child/adolescent psychiatrists.  Sometimes it is difficult to find treatment even though it might be nearby.  Here is a good resource to make the search easier:

What We Can Do To Help Right Now

SAMHSA released a statement in June 2018 which reports that opioids are responsible for one in five deaths for young adults.  We have to do something.  We are not powerless players in this country and can influence legislation to make things happen quickly.  We can join advocacy groups, volunteer as mentors and help people find treatment options.  Here are some points of action for you to consider:

  • The Helping to End Addiction and Lessen (HEAL) Substance Use Disorders Act of 2018 is in the Senate Finance Committee scheduled for markup on 6/12/2018. It will then (hopefully) move forward.  This Act provides sweeping changes that would alter the way we deal with SUDS/MI. Dr. Nora Volkow, Director of National Institute on Drug Abuse just announced that HEAL is being kicked off at current funding levels of $500 million.  It is a light at the end of the tunnel.  Contact your congressional representatives and Senators.  Encourage them to support HEAL.
  • Talk to pediatricians and other doctors you know. Pediatric primary care providers (PCPs) are in a unique position to take a leading role in this effort because families often turn to them first for help with mental health concerns. Although there are a number of systemic, cultural, and individual barriers to accessing mental health care, promising interventions and integrated behavioral health care models have emerged that can be implemented in the primary care setting to help PCPs close the enormous gap between mental health needs and access for children and families experiencing poverty.
  • Encourage legislators to change Juvenile Justice treatment of Medicaid eligibility requirements. When kids enter jail or prison, many states terminate their Medicaid enrollment, meaning they must reapply once back home or in the community.  This often leads to gaps in coverage and delays in access to treatment.  There is a House bill that would prohibit states from terminating Medicaid enrollment for youth under 21 who are incarcerated.  It would also require states to re-determine their eligibility prior to release so coverage is immediately available when they return to the community.
  • Building Blocks for a Healthy Future is a website where parents, caregivers, and educators can find great tips and tools that help children make healthy decisions as they grow up. Pass this information on to friends, family and associates.
  • National Children’s Mental Health Awareness Day raises awareness about the importance of emphasizing positive mental health as part of a child’s overall development from birth. This year’s national observance focused on the importance of an integrated health approach to supporting children, youth, and young adults with serious emotional disturbance who have experienced trauma. For more information and downloadable graphics, visit the continually updated Awareness Day 2018 page.
  • The Safe Schools/Healthy Students initiative is a program designed to prevent violence and substance abuse among our nation's youth, schools, and communities. The Safe Schools/Healthy Students Initiative takes a comprehensive approach, drawing on the best practices and the latest thinking in education, justice, social services, and mental health to help communities take action. To date, SS/HS has provided services to over 13 million youth and more than $2 billion in funding and other resources to 386 communities in all 50 states across the Nation. For more details about the SS/HS Framework and how it can be used to assist communities engaged in this work, click here.

So let’s get started.  We still have a long way to go if we are serious about abating this life or death healthcare crisis. You are a critical link in making the changes necessary. Please help save our suffering children.

Robert Kenneth Jones is an innovator in the treatment of addiction and childhood abuse.

In a career spanning over four decades, his work helping people recover from childhood abuse and addiction has earned him the respect of his peers.

His blog, An Elephant for Breakfast, testifies to the power of the human spirit to overcome the worst of life’s difficulties. We encourage you to visit and share this rich source of healing, inspiration and meditation.

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Bob Jones’ blog An Elephant for Breakfast