Health Equity for People with IDD
By David A. Ervin, BSC, MA, FAAIDD
In early 2014, over a bottle of Malbec and talk of health and healthcare for people with intellectual and developmental disabilities (IDD) in the dining room of my house at the time, my mentor, friend and colleague, Dr Leslie Rubin, and I, committed at that point for years to health equity for people with IDD, dreamed of bringing together for some sort of planning event for all the major advocacy organizations, healthcare community provider associations, and any others that might be interested in combining efforts to push for health equity for people with IDD. We envisioned all these organizations and all of their leadership coming together to establish an agenda and make commitments to addressing and resolving rampant health disparities experienced by people with IDD. Surely, we believed, if the major organizations dedicated to people with IDD were to come together in common purpose, real, substantive and lasting work could be done to achieve health equity.
The next day, I started calling around to the organizations with which I spent the most time to see if we could tempt them into such a coming together. I’m fairly certain it was Maggie Nygren, the immensely talented CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD), who put me in contact with a person of whom I’d never heard who had recently become president of an organization of which I’d never heard. That newly-minted president was Dr Matt Holder, and the organization he would lead was the American Academy of Developmental Medicine and Dentistry (AADMD). Matt and I would end up working very closely and collaboratively over the ensuing months, and we were ultimately joined by an unprecedented array of organizations, literally from around the world, for the Global Summit on Innovations in Health and IDD in Los Angeles in Summer 2015.
Through that work, I came to know Matt well, but I also met the driving forces of the AADMD. People whose names and reputations preceded them, but with whom I’d never meaningfully worked—absolute legends in health advocacy for people with IDD at a time when there weren’t many, all committed to health equity for people with IDD.
Soon, I would begin working more consistently with AADMD. As I did so, I got to know more and more intimately the organization’s raison d’etre. The more I came to know and understand, the more I wanted deeper involvement. This was “my tribe”, and I searched for ways to work with and become part of their work.
I should note that I’m not a clinician. I used to be, but those days are long lost to my passions for system design and development, for practical and translational research, for geeky policy work, and for community supports and advocacy. Someone once told me I’m a ‘pracademic,’ an amalgam of a practitioner and academic, which fits me perfectly!
The AADMD’s mission is “to provide a forum for healthcare professionals who provide clinical care to people with IDD and improve the quality of healthcare for individuals with IDD.” I love this, of course, but as a pracademic, I’m still not a clinician and certainly not a healthcare professional. So, I dutifully and religiously paid my Associate Member dues, attended conferences, made presentations, and contributed wherever and however I could to further the work of the AADMD.
Through the eight-plus years that have passed since my first chat with Matt, I’ve worked with the Board of the AADMD on strategic planning and positioning, on developing tools and policy statements that deepen the impact and lengthen the reach of the organization. It has been and remains work I cherish. It never occurred to me to give a second thought to my Associate Member status.
This summer, at their historic One Voice Conference in Orlando, Florida, I became the first-ever Honorary Member of AADMD. Unbeknownst to me, the Board of Directors unanimously bestowed this honor on me in recognition of my dedication to and work with and for the AADMD. It’s an astonishing honor. As I told outgoing President, Allen Wong, the purpose and work of AADMD is something to which I have been and will remain, so long as they’ll have me, utterly committed.
AADMD is the leading health advocacy, health equity organization at the nexus of healthcare and IDD. They proudly and accurately boast that since 2002, they have led the effort to improve the quality of healthcare for people with IDD. Per Past President, Dr Steve Sulkes, “AADMD members are training future healthcare leaders, structuring healthcare systems that more effectively respond to patients’ needs, developing evidence-based health guidelines, and advocating for change at levels ranging from the local to the federal to the galactic!”
I’ve known Allen and Steve and Matt and all of the AADMD leadership for eight magnificent years, and I have watched in wonder as they build an ever-expanding tent for ALL of us committed to health equity for people with IDD. Even a non-clinician like me. As the inaugural Honorary Member in this 20-year-old organization, I happily urge you to join our cause. There is so much work still to do, so much ground still to cover, so many miles still to travel.
As we grow our leadership in the health equity space, and as we seek to grow our impact, we welcome you to our work. It will take all of us. Professional Members, Associate Members, health science students, even International Members. And, in my case, the first-ever Honorary member.
About the Author
David A. Ervin, BSC, MA, FAAIDD, is CEO of Jewish Foundation for Group Homes, a nonprofit supporting people with intellectual and developmental disabilities (IDD) in Maryland and Virginia. With more than 30 years in the field, Mr. Ervin has extensive professional experience working in and/or consulting to organizations and governments in the U.S. and abroad. He is a published author and speaks internationally on health, wellness and healthcare for people with IDD and other areas of expertise.