A common experience working in the human services field is fragmented systems of care. While the human service delivery system in the United States as a whole is robust with a plethora of providers, advocacy agencies in each sector from drug and alcohol, mental health, vocational rehabilitation, employment, leadership training right through to in-home care and non-medical transportation. However, the system as a whole is deeply siloed. There are many reasons for this fragmentation from reimbursement and funding structures and policy perspectives to organizational structures and theoretical foundations that underpin service provision mindsets. An area where this fragmentation is extremely pronounced is between the mental/behavioral health system and the service delivery system in place to support people who experience intellectual and developmental distinctions. There is a significant gap between two systems that should be tightly integrated.
Research for Social Change
The gap between these two systems is no secret or a mystery and there are many researchers, policy guru's and service providers from all levels of both fields working to close this gap. Proof of this work was on display this year at the Bridging the Gap Conference in Arizona sponsored by the Arizona Department of Economic Security's (DES), Division on Developmental Disabilities (DDD). The aim of this conference was to discuss means and research and service delivery methods and work being performed all over the country that is making serious inroads into recognizing that people who experience intellectual and developmental distinctions and Autism also have behavioral health needs. The two are in many ways inseparable.
Held over the course of three days in September at the beautiful Desert Willow Conference Center in Phoenix the planning committee at DES and DDD assembled an amazing array of researchers service providers and lectures that showcased the work being done to not only bring the concept of the intersectionality between IDD and Behavioral health, but how to reframe thinking at the service delivery and policy levels to meet this need despite the fractures in the system.
Keynote presentations were delivered by Dr. Anthony McCrovitz of the Quality of Life Institute and Dr. Robert Klaeh who discussed the impact environmental pollutants are having on the rates of Autism Spectrum Disorders and the prevalence of gender dysphoria.
Dr. McCrovitz’s presentation highlighted a very important factor that gets lost in service provision at all levels but particularly when addressing what we may consider "challenging behaviors". Dr. Tony asks all of us to reframe our perspective and remember we are not here to correct people we are her to engage with them and build that engagement so that they can engage with others. It is quite possible that what we have been defining as "attention seeking" behavior is actually "connecting seeking" behavior.
Other notable presentations included Dr. Lee Underwoods work on Trauma Informed Care and Motivational Strategies for Clients with Sexual Behavioral Problems, Aging with Autism: Changes in Behavior and Development of Comorbid Medical Conditions by Dr. Elizabeth Leonard, Guardianship & Supported Decision Making by Sey In of Disability Rights Arizona and Melanie Mills of The Arc of Arizona and of course the phenomenal Dr. Karyn Harvey who has been a staunch advocate for trauma informed approaches to supporting people who expereince IDD/A. Dr. Harvey’s presentation covered Adapting Counseling Techniques to Meet the Needs of Individuals With I/DD. We must accept and understand that people who experience IDD have trauma that is deep and profound, and they need just as much if not more support with addressing that trauma as the anyone else.
I was also glad to have the had opportunity to catch the awesome presentation by Jacy Farkas from the University of Arizona Sonoran Center for Excellence in Disabilities. Jacy's team dove into the complicated subject of pregnancy and parenting support for people who expereince IDD. The idea of parenting and parental rights is a layered and complicated subject that the current system and those within and without are still grappling with. Jacy Farkas's team did an excellent job unpacking those issues and integrating the idea of supported decision making into the discussion.
The success of the 2024 Bridging the Gap Conference is not just in the presentations and their much-needed content but it is the conference itself. Systems begin at the level of paradigm. There is no system that exists today that did not first take place with the formation of a thought, a paradigm, a way of looking at a situation. The current human service delivery system is in need of transformational change. This type of change can only take place by intervening at the paradigm level. The Bridging the Gap Conference represent a paradigm level intervention; changing how we THINK about systems that can meet the needs of our fellow citizens.