Unlocking Hope: Mental Health & Special Education

Multiple pediatric associations, including the American Academy of Pediatrics (AAP), American Academy of Child and Adolescent Psychiatry (AACAP) and Children’s Hospital Association, have declared a national emergency in children’s mental health. The fallout from the ongoing youth mental health crisis is overwhelming our national education and healthcare systems. The lack of fundamental knowledge around the relationship between physical and mental health has perpetuated historic disparities. Staffing shortages and lack of treatment facilities are adding to the challenge, making it impossible for many families to access appropriate care, shifting the burden to public schools, and sparking a contemporaneous crisis in special education. 

For students with complex mental illness, difficulty accessing school compounds the diagnostic odyssey they face as patients. Caregivers must simultaneously learn the rules and languages of two complex systems: mental health and special education. The result is a cadre of emotional disabilities, learning challenges, and treatment resistant mental health diagnoses which may be indicative of rare immune-mediated neuropsychiatric disorders such as PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome), PANDAS (Pediatric Autoimmune Disorder Associated with Streptococcal Infection), Acute Thyroiditis, Autoimmune Encephalitis, Neurological Lyme Disease and many others that trigger cognitive impairment following infection.

Dearborn Academy, a private therapeutic day school in Newton, MA, is at the epicenter of the crisis. In the absence of diagnostic clarity, students wait months, if not years, to see specialists, hopping between mental health providers and experimenting with numerous psychotropic meds from multiple prescribers. It is not uncommon for private therapists to break-up with Dearborn students due to lack of progress. These same students are also frequent fliers in emergency rooms. In a recent survey of 16 Dearborn caregivers, nearly half reported ER stays of 3 days or more and several reported stays of nearly a month. Adding insult to injury, acute worry, stress and advocacy for their children takes a toll on caregivers’ well-being, resulting in caregiver trauma.

The Gauch-Chapman [Provisional] Neuroimmune Psychiatric Screen offers hope for people suffering from treatment resistant mental illness by helping them achieve diagnostic clarity and seek appropriate treatment. The tool was designed to 1) ensure rule outs of etiological medical conditions per the DSM-V-TR and 2) expand the depth and scope of diagnostic criteria for a cluster of rare diseases under the umbrella of Immune-Mediated Neuropsychiatric Disorders. Note: the tool's creators are currently exploring legal protection for the intellectual property associated with Gauch-Chapman Screen, which once obtained, will be open sourced. 

The Gauch-Chapman Screen was created to identify common traits among students benefiting from Dearborn's innovative consult model, which connects experts in the fields of education, mental health, and medicine with caregivers to remove barriers to care. The consult model was implemented in the midst of the pandemic to address the underlying reason(s) for growing numbers of students presenting as treatment resistant and simultaneously failing to make academic progress despite the therapeutic school environment. 

A web-based pilot of the Gauch-Chapman Screen would include a rollout to more than 10 school-based behavioral health clinicians at Dearborn Academy to test the user interface and facilitate preliminary data collection. Converting the screening tool to a web-based version would expand the subject pool for a validation study and aid in data collection to learn more about this unique patient cohort. Once validated, the Gauch-Chapman Screen will be disseminated as an open source tool for medical and mental health providers. 

The Gauch-Chapman Screen is simple and can be utilized by clinicians in any setting, including public schools. Early detection resulting from widespread adoption could eliminate years of suffering for patients and caregivers, advance targeted therapies, reduce pharmaceutical waste and related adverse events, and eliminate emissions for travel to unnecessary medical appointments.

Dearborn Academy serves special education students with emotional and learning disabilities from more than 25 school districts including Boston and the surrounding metro area. The diverse student body comprises the neediest and most marginalized children and adolescents from a broad range of cultural and socioeconomic backgrounds. Dearborn’s students, as well as their caregivers, have been repeatedly underserved, not well understood and ultimately forced to leave their public community schools.

The school is full of students contemplating suicide on a daily, if not hourly, basis - including many of whom have been hospitalized repeatedly for self injurious behaviors, suicidal ideation, or attempts on their lives. Dearborn's consult team is working as quickly as they can to determine the root causes of these students’ treatment resistant symptoms. The goal is to prevent another life from being lost or relegated to a lifetime of chronic mental illness and symptom management. To date, the team has helped identify more than 30 students with underlying infections and immune-mediated or autoimmune conditions that, once found, enabled them to pursue appropriate treatment and begin healing in ways previously unseen by Dearborn's clinicians. However, the most compelling proof is the numerous stories from students their caregivers who were able to able to find the root cause of their symptoms and access treatment - Read Nicole's Story. Additionally, veteran caregivers whose student's have benefited from the consult model offer testimonials like:

"We sought professional consultations and he was misunderstood and inaccurately labeled with a slew of incorrect ‘diagnoses’"

"I just wish it hadn't taken 5 years to find help."

"She feels better knowing that [it's medical] and that there are reasons behind what she's been feeling, and we can treat it"

Creating a web-based version of the Gauch-Chapman Screen and offering it as an open-source tool will expand benefits from the Dearborn Consult Model to other schools and clinical settings. 

First and foremost, staff at Dearborn Academy are focused on helping students heal. It is widely accepted that education leads to better health outcomes throughout life. Head of School, Rebecca Altepeter, ensures an emphasis on both clinical and academic success, allowing staff to explore the less understood reverse causality, which is that poor health, and specifically chronic mental illness, impedes access to education. The Head of School has prioritized limited discretionary funds to improve the health and wellbeing of students and their caregivers, which has proven both effective and more equitable for many families. These guiding principles are what inspired the implementation of the Dearborn Consult Model and the recent pursuit of research opportunities.  

The consult team, led by Principal & Clinical Director, Sheilah Gauch, includes co-founders and consultants: Margaret (Peggy) Chapman, Clinical Nurse Specialist in Child and Adolescent Psychiatric Nursing and Dr. Melissa McCormack a pediatrician with expertise in neuroimmune disorders. The team is supported by the School Nurse, Alyssa Coneys and 7 school-based counselors. The consult team was recently invited to give a joint presentation at the 2022 TAMF Symposium titled: PANS/PANDAS: Recognizing, Understanding and Treating Immune-Mediated Neuropsychiatric Disorders to highlight the impact of their interdisciplinary collaboration for an esteemed group of clinicians, researchers and advocates from across the globe.

The most powerful endorsement of the Solution Team occurred at an another TAMF event in April 2023 held specifically to celebrate and highlight the work at Dearborn Academy. Collaborators and representatives from many non-profits in the rare disease community, including the JBC Fund and Mending Minds Foundation, joined together with patient advocates, legislative activists, and healthcare providers to hear about progress with the consult model, which included emotional testimonials from a former student and current caregivers.

Everyone on Dearborn's leadership and consult teams have expanded efforts well beyond the scope of paid duties to pursue research awards and make meaningful professional development contributions to their respective fields with the hope that others will replicate their success. The larger research team, which encompasses the school's leadership and consult teams, is bolstered by consulting research director, Mary Sparks, and scientific advisor, Sarah Waywell who offer expertise in academic medicine, biotechnology and patient advocacy along with newly acquired research intern, Wiley Smith.       

Leadership at Dearborn Academy understands that inherent within the student body is a unique cohort of human subjects poised to help advance the science of mental health; however, clinical research and development in a school environment is a novel and untested concept. Furthermore, funding for clinical care in schools is limited in both scope and availability. Securing financial support for the consult model and correlating research has been challenging. The hope is the prize will lead to appropriate funding for the free care currently offered through the consult model and create opportunities for future research. 

Despite enormous benefits and tremendous interest, it has become very clear that the cost to conduct research in a school setting appears excessive and prohibitive when compared to an academic medical setting. This is in part because schools are lacking comparable infrastructure such as electronic medical records and billing systems for reimbursement from third party payers, but mostly because achieving diagnostic clarity in the absence of validated clinical protocols requires a staggering amount of time and effort from key personnel. Team members also spend an extraordinary amount of time bridging in with outside providers in order to get laboratory tests and triage patients towards treatment. 

This prize would advance the development of the Gauch-Chapman Screen, and by doing so, generate critically needed support to for the consult model, and demonstrate the value and feasibility of school-based clinical research.

Sheilah's Personal Statement: 

"I am a licensed social worker and educator with more than 20 years experience working with students facing complicated mental health needs. As the principal and clinical director of a therapeutic day school I rely on a collaborative process that draws on both my personal and professional experience navigating complex systems to best support children. In addition to my own experience with a former mental health disability, I have two children, whose mental health issues were so significant they could not access the public school curriculum in our community resulting in costly out of district placements at therapeutic schools for the majority of their childhoods. Both children initially presented with treatment resistant mental illness prior to being diagnosed with a rare disease PANS/PANDAS. As a social worker, never having heard of the illness, I was both shocked and humbled. This led me to learn as much as possible and impart this knowledge to my staff and colleagues both in and outside of Dearborn Academy. My mission has since evolved to coaching professionals across all settings working with children and adolescents suffering from treatment resistant mental illness and emotional disabilities on how to incorporate the latest science into best practice, with particular emphasis on the DSM-V differential diagnosis to rule out medical causes to mental health issues." 

Sheilah's advocacy work is multifaceted, and her expertise is increasingly recognized and sought after. She was a 2021 recipient of the Massachusetts Commonwealth Heroine Award for her leadership of the MA PANS/PANDAS Legislation Coalition and subsequent passage of MA Bill S. 2984, as well as her longtime chairmanship of the Melrose Special Education Parent Advisory Council (SEPAC). Her legislative activism continues through her work as Co-Founder/Board Member of the National Alliance of PANS/PANDAS Action (NAPPA) and Co-Facilitator, Massachusetts PANS/PANDAS Advisory Council

In 2021 she joined the board of The Alex Manfull Fund, and in 2022 she was nominated by EXPAND to present at the International Network for School Attendance (INSA) in the Netherlands. She is an In-service/Presenter for the Massachusetts Partnership for Youth and most recently she was invited to share her perspective via a Psychology Today blog. Spurred by personal experience, Sheilah is particularly passionate about the importance of supporting caregivers, and many of her most recent speaking engagements focus on understanding caregiver trauma which is a central component of the Dearborn Consult Model.     

The organic enthusiasm for the work being done at Dearborn Academy is undeniable, and there is general consensus that this wholistic approach has the potential to revolutionize the way we think about mental health. The Gauch-Chapman Screen is only the initial step of what the Dearborn Consult Model offers students, but both tools force evaluators to fully consider the relationship between medical and psychiatric symptoms.

As word spreads and the Dearborn team establishes relationships with other leaders driving change in the field of mental health, the need to understand the pathophysiology of neuropsychiatric symptoms like depression and anxiety, as well as their connection to rare immune-mediated and autoimmune diseases, has become imperative. Validating a neuropsychiatric screen in a school setting is a just the beginning. The innovative team at Dearborn Academy is on track to make more clinical contributions, and scale the consult model so that it can be used in other schools, but the overarching goal is to help medical and mental health practitioners use current research and science to improve care for patients with treatment resistant mental illness regardless of the delivery setting.

There are many compelling benefits to school-based clinical research including: equitable and diverse study cohorts, unparalleled access to human subjects in a natural environment, and high quality and quantity of corresponding data. Having designed the consult model specifically to remove barriers to care and improve outcomes for their students, the team identified caregiver stress as one of the most prevalent and overlooked barriers to clinical care, and subsequently, participation in related research. School-based clinicians have better proximity to families and caregivers allowing them to establish trust and understand cultural differences. 

Goal #1 - Digitization and dissemination of the Gauch Chapman Screen so that it can be easily used by any clinician addressing behavioral health issues.

Goal #2 - Successful validation of the screening tool leading to wide acceptance across specialties, disciplines and systems.

Goal #3 - Implementation of the tool and the Dearborn Consult Model in other schools to reduce special education spending and improve outcomes for students with emotional disabilities.

Goal #2 - Leveraging the cohort of human subjects at Dearborn Academy to advance the science of mental health through grant awards, collaborations and subcontracts for observational clinical research.

Goal #3 - Peer reviewed publications and presentations to professional associations to encourage widespread utilization of the Gauch-Chapman Screen in all care settings, with an emphasis on emergency rooms and psychiatric hospitals, to provide immediate answers and appropriate triage for patients in crisis.  

Goal #4 - Expanding the cohort of potential research subjects to other educational settings via the Gauch-Chapman Screen to address the youth mental health crisis in schools.

Our immediate target will be to digitize the Gauch-Chapman Screen. We plan to use student and caregiver response data to validate metrics on the screening tool before wider dissemination. 

Indicators of progress will be as follows 1) Quantifying the incidence of rare diseases identified in students at Dearborn Academy and 2) the proportion of beneficial treatment outcomes after a rare disease diagnosis. 

Potential metrics to assess long term impact include:

• Number of unique visits to the the web-based tool 
• Average length of ER visits and stays in psychiatric units for hospitals who have adopted the Gauch-Chapman Screen compared to those that do not utilize it
• Total amount of awards and contracts for observational research at Dearborn Academy
• Number of peer-reviewed publications resulting from the Solution Team
• Number of schools adopting the Dearborn Consult Model
• Changes to number of out of district placements and related spending for school districts that have implemented the Dearborn Consult Model 
• Number of schools participating in clinical research to understand the pathophysiology of mental illness

Our theory of change resides on the idea that those with complex mental health disorders should not be societally discarded. Dearborn Academy is dedicated to addressing the educational, social, emotional needs of children deemed as "too difficult" for a public school setting. In doing so, clinicians have identified that many of these children deemed to have "treatment-resistant" mental health disorders, were being treated improperly. Even though the Diagnostic and Statistical Manual of Mental Disorders (DSM-V-TR) requires medical rule outs, many don't understand what it means, it's rarely done, and there are no widely adopted tools to assist providers. The development of an empirically-validated screening to for rare immune-mediated neuropsychiatric disorders would be a foundational step to identify and provide appropriate treatment to this vulnerable population. 

The technology that powers our solution is REDCap (Research Electronic Data Capture). REDCap is a free, web-based electronic data capture tool to support clinical research studies. In our case, this tool will be used for digitization and validation of the Gauch-Chapman Screen for immune-mediated neuropsychiatric disorders.

The Solution Team consists of 8 people and includes everyone involved on the Dearborn Academy Research Initiatives Team plus a new research intern specific to this project.

Full-time staff at Dearborn Academy:

• Rebecca Altepeter, MS Head of School
• Sheilah Gauch, LICSW, M.Ed., Principal & Clinical Director
• Alyssa Coneys, MSN, RN, CPNP-PC, School Nurse

Consultants:

• Margaret Chapman, PCNS, Clinical Nurse Specialist in Child & Adolescent Psychiatry
• Melissa McCormack, MD, PhD, Pediatrician
• Mary Sparks, Administrative Director for Research Initiatives
• Sarah Waywell, BS, MHL, Scientist

Volunteers:

• G. Wiley Smith, Research Intern

4 years. The Dearborn Consult Model was implemented in spring of 2020 in the midst of the pandemic.

Diversity + Equity + Inclusion = Belonging, and belonging is central to the healing process. The staff at Dearborn Academy go above and beyond to make all students feel comfortable to be themselves and model adults engaging in courageous conversations about diversity, equity and inclusion. Students must see representation in the staff and student body, in the visual objects displayed around the school, and in the curricula. The intentionally diverse student body is 25% BIPOC/Latinx and consists of 47% males, 41% females and 11% non binary students.  24% of the staff and 17% of the leadership team identify as BIPOC/Latinx.

Dearborn is proud to have a dedicated team of volunteers engaged in weekly DEI meetings, and they are a valuable resource to the solution team. The entire staff team has benefited from the consultation and training from experts in the field regarding the critical issues that include recognizing and responding to microaggressions; hiring and retaining staff of color; understanding the needs of many LGBTQIA++ individuals; and expanding our already extensive use of restorative practices to better reach students with disabilities. 

Supporting caregivers is also critical to Dearborn's DEIB strategy. Caregiver stress is among the most prevalent and overlooked barriers to clinical care, and subsequently participation in related research. Addressing caregiver trauma is a key component of the Dearborn Consult Model.

“As a parent, to not be alone is the biggest resource possible. All of us have felt ‘outsidedness’”. - Former Dearborn Parent

School districts and third party payers will see the greatest cost savings from the Gauch-Chapman Screen. Both systems stand to benefit from investments in training and research related to the screening tool and Dearborn Consult Model. There is also an opportunity to contribute to the research and development of targeted therapies and biotechnology.  

Our national education system is on the brink of collapse. As the youth mental health crisis escalates, so does the need for qualified special education teachers and programs to serve students with emotional disabilities. The federal Individuals with Disabilities Education Act (IDEA) mandates that school districts offer all students a free appropriate public education (FAPE) in the least restrictive environment (LRE), which includes special education and related services for eligible children with disabilities. When a public school cannot comply with IDEA federal mandates, they may outsource the responsibility and recommend an alternative learning environment such as Dearborn Academy at no cost to the student or their family.

In most states, tuition for out-of-district special education placements is paid by state and local tax dollars, increasingly straining school budgets. Dearborn Academy's annual tuition (including the summer program) is nearly $116,000, significantly more than the average teacher salary, and that's in addition to transportation and possible legal fees. As the demand for therapeutic schools rises, so does the competition. Dearborn Academy can only accept 8% of applicants. The system is neither equitable nor sustainable, and educators are desperate for cost-effective solutions.

These same students are also racking up expensive medical bills that do little to improve their health apart from keeping them safe during an acute flare. The cost of an emergency room visit for a psychiatric evaluation ranges between $3,000-$5,000. Add to that professional fees for ER physician and psychiatrist, laboratory tests, pharmacy charges and boarding fees of approximately $1,000 per day if no bed is available. Psychiatric admissions tack on another $1,000-$3,000 per day depending on the facility. Insurance companies stand to see huge long term savings by incentivizing medical and mental health providers to help patients achieve diagnostic clarity. 

Finally, the FDA and the rare disease community have both recognized the need to improve the experience for patients and caregivers participating in research and clinical trials. The FDA just launched the Rare Disease Endpoint Advancement (RDEA) Pilot Program with the goal of improving the experience for patients participating in clinical trials. The cohort of human subjects already assembled at Dearborn Academy eliminates many difficulties recruiting subjects including the need for travel to centers of excellence. Dearborn Academy is uniquely positioned to conduct natural history studies in lieu of control groups. To be explicitly clear, Dearborn Academy would not operate clinical trials in the school, but could contribute to the advancement of targeted therapies and diagnostic tools via observational studies of consenting students participating in the Consult Model.     

The plan to financial sustainability involves three overlapping phases.

Step 1 - Dearborn Academy has just embarked on a PR campaign with a firm specializing in non-profits and responsible companies to seek philanthropic support for the consult model, and funding for the free care provided via the school in the short-term. Additionally the team is working to submit preliminary a research paper to a peer-reviewed scientific publication to enhance clinical credibility with both providers and payers.

Step 2 - Dearborn Academy will continue to pursue research awards and government funding to help share the knowledge gleaned from this unique patient cohort, including training providers to use the Gauch-Chapman Screen and adopt the consult model. Members of the solution team will expand their network of collaborators within the rare disease community; however, it is impossible to conduct research unless funds are secured for the consult model.

Step 3 - Dearborn Academy has the capability to contract with for profit corporations developing diagnostic tools and targeted therapies for mental illnesses, and leadership at Dearborn Academy is already fostering collaborative relationships within the biotechnology and pharmaceutical industries leaders.

On April 13, 2023 Dearborn Academy kicked off a philanthropic fundraising campaign with an event sponsored by The Alex Manfull Fund at a private home. More than 60 guests attended, and donations are still coming in after a recent match incentive was offered. The final amount raised has not been announced yet.