Nowhere to Turn: A Comprehensive Approach to Treatment-Resistant Behaviors

Right now, in Western New York, if you are an adolescent with disabilities and are experiencing a behavioral crisis, there is nowhere local for you to receive care.

Neurobehavioral units are dedicated to the assessment and treatment of children and young adults with intellectual and developmental disabilities (IDD) who have severe behavioral problems, yet Buffalo and the surrounding area has none. The closest place to receive crisis-level care—including intensive inpatient care for youth with treatment-resistant behaviors— is at the Kennedy Krieger Institute in Baltimore, which is a six-and-a-half-hour drive from Western New York.

Treatment-resistant behaviors refer to behavioral issues that are so pronounced, that they negatively affect the quality of life of a young person. For individuals with IDD or autism, these behavioral issues can include self-injury, aggression towards others, running away, and more. They’re not easy to address under the best of circumstances, and in a time of crisis, specialized support is essential. Numerous complex issues like housing, health, medication, and mental health must be taken into account to effectively treat a young person and achieve significant long-term results. This kind of care is not only extremely expensive for many families, but for Western New Yorkers, it’s unavailable.

Laura Ryan, a mechanical engineer in Buffalo, has a son on the autism spectrum. At four months old, she realized he was not meeting the recommended milestones and was experiencing developmental delays. When he ultimately experienced a crisis, she remembers saying, “Why can’t they fix this? I then thought, ‘there is no they, I am the they.’”

Years later, Laura spearheaded the Behavioral and Mental Health (BAMH) consortium composed of IDD leaders in Western Buffalo. The experts combined forces to address the lack of services available to youth with severe behavioral disorders and IDD who are in crisis. The consortium representatives include leaders from DENT Neurologic Institute, Erie County Medical Center, Niagara Falls Memorial Medical Center, John R. Oishei Children’s Hospital of Buffalo, People Inc., and The Summit Center.

BAMH’s initial research confirmed there was a dire need for local crisis services. With funding from the Tower Foundation beginning in 2017, as well as in-kind support from consortium members, the group spearheaded several data-gathering initiatives to better understand the impact of these crises on families and improve the system of care. Collecting data from health care, mental health, and behavioral sources was extremely challenging but yielded an extraordinary picture of the costs that can be incurred when crisis situations arise.

Once BAMH had a better understanding of the issue’s magnitude, they explored the business model for a neurobehavioral unit, educated New York State government officials on the opportunity, and successfully submitted a Certificate of Need to begin the process of developing a Western New York-based neurobehavioral unit. The next challenge was funding. Buffalo has the physical building and expertise to open a facility like Baltimore’s Kennedy Krieger Institute but lacks the funding to open the doors.

While fundraising is ongoing, BAMH is trying to establish a prototype where a patient’s information is housed on a shared database that can easily be accessed by all of the doctors a patient sees. Organized by date, the data will contain any recent changes a patient has experienced to combat the challenge of up-to-date information not being passed along from doctor to doctor.

The current approach to treating individuals with treatment-resistant behaviors is mostly curated in the classroom or other educational settings when youth are below the age of 21. To receive proper help for their conditions, adolescents must see multiple doctors and specialists in tandem. Information sharing between providers about things like changes in diet, activity, behavior, medication, hospitalizations, and overall well-being, is often not communicated effectively, which can affect a person’s care and treatment plan. Up-to-date information is paramount to effectively managing care and identifying any additional services youth may need.

My hope is that by setting up a database of information, we start to see the signs that a crisis may be coming and can collectively get in front of a person needing to be admitted into a hospital setting,” said Ryan.

The goal is to keep individuals with intellectual disabilities out of the emergency room, which is not set up to serve their immediate needs during times of crisis.

BAMH leaders are optimistic that an impatient clinic in Western New York will eventually be opened to serve the Buffalo community and provide families with the help they need to transition back into their home environment after a crisis. Until then, Ryan and other BAMH leaders will continue their much-needed efforts.