My AADMD Journey to Reno and Beyond

AADMD Presidential Perspective

By Dr. Seth Keller, New AADMD President

My AADMD Journey to Reno and Beyond

Thank you to everyone that was able to attend our recent Reno, Nevada annual meeting. Thank you also to the year long work that went into the organizing, speaker selection process, CME planning, and coordination with the DDNA in helping to pull off this very success meeting. The wonderful and touching Saturday Night Reception honoring Katie and Julie Beckett was one of many highlights to this past weeks event. Self Advocacy, empowerment, and a sense of belonging were more than demonstrated that night as well as throughout the meeting. Thank you also to the dedication and support to the Reception’s sponsor, Joanne Gruskos from MassMutual. We also had the privilege of listening to and meeting with our various invited plenary quests; Bob Gettings, Steve Eidelman, Nancy Thaler, Gloria Krahn, George Jesien, and Hank Chambers. Health Disparities in Adults with DD was a major focus of these discussions and we all agreed that it remained a significant problem which would require a group effort to tackle including a concerted and timely effort to get DD to be recognized as a Medically Underserved P opulation. Points made during the talks and panel discussions were at times controversial and provocative, but there were many hopeful signs of agreement and ample room for cooperation. Rubens Pamies provided an impassioned discussion on the health disparities status of African Americans and our own Rick Rader was also thoroughly engaging with high fervor in discussing the more perilous status of African Americans who also have DD.

There were many fascinating and valuable lectures in various health care topics in DD, several of which were given by our own academy members. All of us will never forget the meeting of new friends, forming new alliances, and of course, the word A-L-H-O-A will never have the same meaning again.

Finally, the tremendous partnership and help provided by the DDNA board and its membership in bringing this monumental highly successful annual meeting together was deeply appreciated. It further exemplifies our relationship with the DDNA as strong healthcare groups with share a common purpose and goal. We were fortunate also to have a number of superb friendly and engaging volunteers who spent many tireless days and nights making sure that the meeting went smoothly, and no detail was too small, thank you so very much.  Information will be available on our website on how to get CME Credit for attending the various conferences. Thank you to the University of Louisville for their support.

Seth

SOME LATE NIGHT MUSINGS ON HOW I GOT HERE......Seth Keller, MD, AADMD Newbie President

This past week in Reno has made me reflect in where I have come from professionally as a young naive upstart neurologist to where I am now, the latest AADMD president. My growth curve in many ways parallels that of our own AADMD journey. I had always been intrigued by neurosciences, education, and objective outcome practices. I treated and evaluated seizure disorders using these same principles. I became a Vagus Nerve Stimulator consultant over 10 years ago after searching for a niche within my suburban private practice. It became self evident that most of the refractory seizure patients where those with Developmental Disabilities (DD)… so my journey began.

I sought out for the large ICF/MR in the area, New Lisbon Developmental Center in South Central New Jersey. I had a meeting with the medical director and staff and shortly became the facilities Neurology Consultant. Why were they so eager to grab onto me?? I soon figured that out. I previously had limited DD neurology experience but I ignorantly figured that I would apply the same principle and practices that I use for non-DD patients. Probably most of you are laughing at this because haven’t you all gone through this similar approach. Didn’t we anticipate that Medical and Dental school had prepared us to go out into the world with a great knowledge base and do great things? So even though I was the Neuro “expert”, I quickly became shocked by the complexity of the patients, including the nature of seizure refractoriness, polypharmacy, co-morbid states, strange and unusual syndromes, as well as the tons of issues with regulations, high turnover of staff, limited and fragmented data, as well as a whole host of social issues and history of DD which I had no real knowledge of at the time.

I didn’t realize that health care for those adults with DD had been marginalized in similar ways to those with DD themselves had been viewed throughout history and within our society. I didn’t know of  Dr Bob Cooke and his strong advocacy in the 60’s and his work with President Kennedy and Eunice Shriver in helping to bring to light and to create an improvement in health care and training for those with DD. It wasn’t on my radar screen that there had been severe neglect to those with DD in state run facilities such as in Willowbrook and Pennhurst. It seemed to me that all was well and we had learned from the past. I began to see more and more folks with DD in my outpatient clinic from the various community agencies including the Arc. It became apparent to me that I needed a broader prospective, so the next leg of my journey began.

By this time I had become more comfortable and confident as a DD Neuro “expert”, not because of any detailed reading of textbooks, CME’s, or correspondences with my peers, but mostly due to my time spent in the trenches and efforts. All of the medical knowledge which I sought didn’t exist in regards to those with DD. I got introduced to Joe Valenzano, CEO and President of Exceptional Parent Magazine. Joe immediately took me under his wing to help out with DD healthcare education and training via a national seminar series on Refractory Epilepsy in DD and later thru webinar training. Then I met Phil May.

I had never heard of the AADMD and I never knew of the then recent Surgeon Generals meeting and report Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation. I wasn’t shocked that there were major short comings in DD healthcare, I had seen it and felt it firsthand. Phil invited me to become a AADMD member, but he also challenged me on many of my preconceived notions about standards of care and treatment practices that were often not proven or tested. Like many past challenges, I decided to come up to Hunterdon Developmental Center and became one of 2 Neurology Consultants. I attended my first AADMD national meeting which was run during a World Congress on Disabilities event that had been organized by EP and Joe Valenzano. I soon met the likes of Sandy Fenton, Steve Zelenski, Henry Hood, Steve Perlman, Matt Holder, Rick Rader, and of course Phil May who I had already known. Ned Rapp and Adadot Hayes like myself were early additional members to the academy bringing new ideas and growth to this new grass roots organization.

I was in awe of these guys, all super nice people who were ardent in their ideals to advance DD Healthcare issues. They all had strong leadership experience in advocacy and training, but were working towards nationalizing this agenda via the AADMD as had been set forth thru David Satcher’s National Blue print previously. The conglomeration of Oral health with medical professionals had never been done before, but it was an obvious fit and need. I felt at home with my new friends, I could discuss my views, my experiences, as well as my frustrations with the current care practices.

The AADMD started with Phil May as its first President. Phil was the George Washington of our group. He was able to pull together a group of strong willed and independent thinkers together and try to get them to think as a whole, towards a common purpose.  Sandy Fenton our second President brought structure and organization to our group by insisting that we obey rules and regulations, he brought order to our group by helping to write the first version of our Bylaws and Constitution.  Rick Rader our third President brought his typical knack for strong networking and flair to our academy. It was during this time that we officially affiliated with the Developmental Disabilities Nurses Association (DDNA). We understood that it took a team approach towards the delivery of high quality and effective health care, and who would be the best to partner with, but DD Nurses; who already had been strong advocates and had organized long before we were able to get our organization together.

The current national dictums of DD issues involving training, policy, and resources predominantly go thru state and national organizations such as NASDDDS and the AUCD/LEND/ UCEDD system.  State DD Councils also play a major role as well. Unfortunately attention towards incongruence’s within health care had been mostly ignored until recently.