PAOH PRESIDENT’S LETTER - The Role of HELEN Journal

Dr Steve Perlman signing MOU with PAOH and IADH

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

In August of 2024, Helen Journal found its new home in PAOH, People Advocating for Optimal Health. HELEN was originally launched in 2022 under the American Academy of Developmental Medicine and Dentistry (AADMD). It was the dream of three friends and colleagues, Dr. Rick Rader, Dr. Steve Perlman, and Helen’s Senior Managing Editor Vanessa Ira. With a long history of working together in the publishing and disability fields, their vision was to create a source of information that would be multi-disciplinary, educational, timely, and focused on the world of people with disabilities and the lives that they touch. This includes families, caregivers, health professionals, or anyone that is involved in the medical or social model of care. HELEN will continue to address issues in education, training, policies, and advocacy.

In June of 2022 I became the President of PAOH. Using HELEN as a forum, I would like to take the opportunity of providing a monthly message to our readers who continue to inspire us to spend the countless hours it takes to produce HELEN bimonthly. PAOH’s mission is to be “a collective catalyst for change in the way healthcare is delivered to and received by people with intellectual, developmental and physical disabilities and their care givers.” Under the umbrella of PAOH will be HELEN Journal and Project Accessible Oral Health.

We have grown so much in the past two years and are proud of the supporting organizations that have endorsed and believe in HELEN. They include The American Academy of Developmental Medicine and Dentistry (AADMD), American Association on Health and Disability (AAHD), Developmental Disabilities Nurses Association (DDNA), DifferentBrains.org, Institute for Exceptional Care (IEC), International Association for Disability and Oral Health (iADH), Special Olympics International (SOI) and Alliance for Oral Health Across Boarders (AOHAB).

“HELEN Journal would like to encourage our readers and their organizations to use the publication as a vehicle to provide information, education, narratives, personal journeys, and to help identify the barriers to care”

This past August, a  roundtable was held in Washington, D.C., rallying key organizations and influencers in healthcare to champion the HEADs-UP Act. The roundtable was led by Vanessa Rastović, a dedicated attorney and passionate advocate with Achieva’s Disability Healthcare Initiative (DHI). With the steadfast support of the CareQuest Institute for Oral Health, this event showcased Rastović’s vision of bringing equitable healthcare access to individuals with Intellectual and Developmental Disabilities (IDD). The roundtable brought together an impressive coalition of partners, including the American Academy of Developmental Medicine and Dentistry (AADMD), the Society of Developmental and Behavioral Pediatrics, OPEN, The Arc of the United States, Special Olympics, Autism Speaks, Harvard Medical School, National Down Syndrome Society, Boston and Cincinnati Children’s Hospitals, IEC, MSDA, PCOH, and Harmony Health.

Congressman Seth Moulton led this powerful gathering to rally bipartisan support for the HEADs-UP Act. The advocates in attendance demonstrated the urgent need to designate individuals with IDD as a Special Medically Underserved Population. This landmark step looks to increase access to inclusive physical, behavioral, and critically oral healthcare.

We are mobilizing a task force to support Dr. Arthur Kemoli of Kenya, a Global expert in Infant Oral Mutilation (IOM) and his consortium of Chief Dental Officers of Africa to eliminate IOM in the region.

Last but not least, in September, PAOH signed a Memorandum of Understanding (MOU) with iADH in Seoul, Korea to collaborate on all three of our pillars, education, advocacy, and policy.

The editors of HELEN Journal would like to encourage our readers and their organizations to use the publication as a vehicle to provide information, education, narratives, personal journeys, and to help identify the barriers to care, the wrong inequalities we see, the issues we face and together let’s work to improve the quality of life for individuals with disabilities throughout the world.