Untangling the Knot: How Do We Best Serve Those with Complex Mental Health Challenges?
*This article, authored by Grafton’s CEO, Jamie Stewart, originally appeared on Psych Central.
In 1958, Ruth Birch, frustrated that her son — who struggled with dyslexia — wasn’t being provided an adequate education, began homeschooling him at her kitchen table. In a matter of weeks, three other students with dyslexia, similarly underserved in public school, joined them. Fast-forward 60 years; public schools today do an excellent job in teaching children with dyslexia. Our system has evolved to address a once unmet need.
Children with complex mental health challenges or developmental disabilities, however, are a different story.
In the last several decades, various factors have impacted the education and behavioral health landscape, leaving a very vulnerable population — children and adolescents with intellectual and developmental disabilities as well as other mental health challenges — in limbo.
Recently, Kaiser Health News published the shocking story of young people with severe autism left to languish in hospitals because proper care was not readily available. These individuals were sometimes sedated, restrained or confined to mesh-tented beds for months at a time.
How could something like this happen in our country? The answer is a complex web that requires significant change to the current system in order to untangle.
A Shifting Landscape
In the last two decades, diagnoses of intellectual and developmental disabilities (IDD) has dramatically decreased while, at the same time, dramatically increasing for Autism Spectrum Disorder (ASD). According to the National Academies of Sciences, Engineering, and Medicine, between 2004 and 2013, the ASD category had the largest increases in number of allowances and determinations per year as well as recipients and recipient proportion of all selected mental disorders. [i]
Just a few decades ago, many children now being diagnosed with ASD would have been labeled intellectually disabled and perhaps placed in a state hospital. The enormous explosion of ASD diagnoses jolted a system ill equipped to support it. Many state hospitals were shuttered in the 1980s, leaving it to unprepared communities to serve children. This left many kids with nowhere to go. There is no Ruth Birch with her kitchen table to support them.
Our system has long focused on providing either behavioral healthcare or serving those with IDD. Behavioral healthcare, through evidence-based approaches, focuses on rehabilitative treatment (e.g. cognitive behavioral therapy). Treatment for IDD has long focused on habilitative therapies (helping disabled people develop and improve daily living skills). The reality is that many individuals require both types of treatment.
So, why do these siloes continue to exist?
Historically, behavioral healthcare techniques have only been tested and proven on individuals with average or higher IQs. There is no empirical data that the same techniques work on those with intellectual disabilities. In more recent years, Board Certified Behavior Analysts and Applied Behavior Analysts have adapted behavioral theories to develop a new methodology specific to serving the IDD population.
At my organization, Grafton Integrated Health Network, therapists comfortably cross the line between the two approaches every day. We must – many of the children and adolescents we serve have complex, co-occurring challenges. By applying a common sense framework, rather than unconditionally following the tenets of empirically based treatments, we have disproved the idea that mental health approaches can’t be used for people with low IQs. Our experience shows that aspects of cognitive behavioral therapy, dialectical behavior therapy and mindfulness, among other modalities, work for this population.
Few if any of Grafton’s clients would fall neatly into the historical siloes. I suspect that the children languishing in hospital beds are in a similar situation. Any solution for this problem will need to integrate behavioral health with IDD-specific services.
Adding to the complexity
The latest thread to add to this already complicated web is last year’s Supreme Court ruling in Endrew vs. Douglas County, often referred to as the most significant special-education issue to reach the high court in three decades. The root of the argument is the level of education public schools are required to provide students with disabilities. While some interpret it as being only the bare minimum, others believe it demands substantial benefit. Regardless, it creates additional complexity and exacerbates the challenges already faced by school systems in terms of the advancement criteria for these individuals.
The good news
It’s clear that we have outgrown the existing system. Under no circumstances is it acceptable to relegate children with complex and co-occurring mental health challenges to hospital beds.
The good news is that we are seeing signs of progress. For the past 20 years, Virginia has created an environment recognizing the needs of these individuals. The state blends funding from a variety of sources (educational, behavioral health, local funds, among others) into comprehensive systems of care to support people, regardless of their particular diagnostic label.
With the recent Endrews ruling, the rest of the country will need to create a similar system. If the necessary expertise and services are not close at hand, alternatives must be found elsewhere. Because we have successfully served these populations for the past 60 years, Grafton is already accepting children from other states. But significant barriers weigh down what should be a common sense solution. If such solutions are to be scaled up, these barriers must be removed. Bureaucracy should not stop us from getting a child the services he or she needs to live a meaningful life.
Let Ruth Birch be an example. Let’s be creative and not allow challenges to stand in the way of best serving children and adolescents with complex mental health challenges. If a society such as ours can’t care for our most at-risk individuals, then we are not a great society.
[i] National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. https://doi.org/10.17226/21780.