By Steven Perlman, DDS, MScD, DHL (hon), PAOH President

"We can't all be heroes, because somebody has to sit on the curb and applaud when they go by."

-- Will Rogers

Over 30 years ago, when Eunice Kennedy Shriver asked me to create a health program for the athletes of the Special Olympics, I was advised and mentored by two extraordinary individuals.

Steve Eidelman was the Executive Director of the Joseph P. Kennedy Jr. Foundation. His career and expertise focused on research, policy and practices for community-based and inclusive support for people with intellectual and developmental disabilities and their families. Steve knew everyone in the field and was always able to connect me with the experts, who, because of his friendship, never said “no” to anything we asked of them.

My other mentor was Dr. Robert Cooke, who was the Medical Advisor to the Special Olympics and recognized as a founder in the field of Developmental and Behavioral Pediatrics. Dr. Cooke was the Chair of Pediatrics at Johns Hopkins and the architect of the National Institute of Health’s Institute of Child Health and Human Development. He formed the President’s Committee on Mental Retardation, started the Kennedy Krieger Institute, laid the groundwork for the National University Centers of Excellence, co-authored the Belmont Report, which was the guiding document of the global bioethics movement and was the visionary behind the Head Start Program.

Early on as we investigated the health of our Special Olympics Athletes, all who had intellectual and neurodevelopmental disability, it was obvious we had to address the issue of aging, cognitive decline, and Alzheimer's Disease much earlier than of the neurotypical population. Sports and fitness programs had to accommodate their aging and ability to compete.

To help me understand the problem and develop a program, they introduced me to Matt Janicki, Ph.D., who was a pioneer in the field and who I have had the pleasure of working with for over 30 years. Another individual who helped us and continues to be a visionary and leader is Seth Keller, M.D.

This month, HELEN Journal celebrates Alzheimer's and Brain Awareness Month. I would like to honor Drs. Janicki and Keller for their long standing commitment to improving the quality of life for older adults with developmental disabilities.

During Dr. Janicki’s early career in state government and academic settings, he became aware of the lack of attention being given to individuals with developmental disabilities as they age, particularly those with Down syndrome, who face an elevated risk of Alzheimer's Disease. As a Joseph P. Kennedy Jr. Foundation Public Policy Fellow, he engaged with National Aging Policy at the U.S. National Agency on Aging and with the U.S. Senate. Over the years, Dr. Janicki’s work has evolved from policy and technical assistance to research and system development, including leading national studies on community support and directing internation efforts to promote longevity in this population. He continues his work through longitudinal research on specialized dementia care models in national initiatives such as the CDC Healthy Brain Initiative.

Together with Dr. Keller, he created the National Tasks Group on Intellectual Disabilities and Dementia Practices (NTG) where they both strive to shape responsive, inclusive dementia care strategies for people with intellectual disabilities.

Dr. Keller came into my life over 20 years ago and has also been a game changer. Co-founding the NTG, he also founded the adult IDD section of the American Academy of Neurology, helping create and develop the aging athlete program for Special Olympics.

In the world of health care for people with Intellectual and Developmental Disabilities the focus has always been on children with programs, research, and education.

Thanks to Drs. Janicki and Keller’s commitment and tireless effort, as a society, we are finally beginning to address the needs of adults in this most underserved population.

PAOH President’s Message: The Heroes

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