November is

Alzheimer’s Awareness Month

Cover photo: Rick Guidotti and POSITIVE EXPOSURE

November Feature

MEET FRANK

This is the amazing Frank Stohlman. Frank is a resident at Pathfinder Village. Pathfinder Village is an internationally renowned open-access neighborhood where individuals with Down syndrome experience the joy of belonging. People with Down syndrome experience a higher prevalence and earlier onset of Alzheimer’s dementia.

Frank collaborated with Positive Exposure to create a FRAME (Faces Redefining the Art off Medical Education) film on Aging: Dementia and Alzheimers in our I/DD community from the perspectives of individuals and families living this experiences and  the health care providers committed wholeheartedly to them. Partners involved are our very own Dr Seth Keller, the incredible Pathfinder Village, Inc and the  National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

This film was funded by the Mother Cabrini Health Foundation.

Visit the FRAME Film and Site: https://positiveexposure.org/frame/alzheimers-dementia-at-the-intersection-of-aging-and-i-dd/

Helen Journal Helen Journal

The Crucial Role of Developmental Specialists in Advocacy 

When you imagine an “advocate,” who and what comes to mind?  Do you imagine a caregiver of a child with developmental concerns – fighting to get your child access to the healthcare and services they need?  Do you imagine a group of parents and caregivers – working tirelessly to advocate for their loved ones in systems that were not created with access, inclusivity and acceptance in mind?  Do you think about self-advocates – persistently fighting for equality of opportunity and fair pay? 

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Helen Journal Helen Journal

Working Towards Changing Cultural Practices: A Personal History in Oral Health Advocacy in Southwestern Uganda

We all have our convictions about health and beliefs that for us stand unquestioned. The diversity of beliefs between individuals and groups of people is part of what makes life interesting and challenging at same the time. Chinese acupuncture has little in common with European aromatherapy and neither fully aligns with evidence-based western medicine. In fact, some therapies may even strike us as so counter to our own knowledge, we’d consider them barbarous. Through my dental outreach engagement in rural Uganda, I have come face to face with such practice dichotomies and have learned the importance of building relationships prior to suggesting change.

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Helen Journal Helen Journal

How One Experience Changed the Way I Approach Medicine

At each of the medical schools in Massachusetts, Operation House Call (OHC) is a small piece of the curriculum, but the unique focus on learning from the lived experience of individuals with autism or IDD and their families has an outsized impact on how these students will practice medicine in the future, regardless of what field of medicine they choose to pursue.

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Helen Journal Helen Journal

2024 Commission on Dental Accreditation (CODA) Standard Revisions Proposal

Studies show that if dental students are exposed in education, both didactic and clinical experiences with a population, they are more likely to treat patients with special healthcare needs (SHCNs) in the future.  It is without a doubt that the dental curriculum is impacted with many subjects that are vying for more time to keep up with the advances in technology.  Being an accredited institution is the goal of all dental education programs.   The Commission on Dental Accreditation (CODA) is empowered by the Department of Education to assure that standards are met for the dental institutions through a peer-reviewed process with calibrated site visitors. 

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Helen Journal Helen Journal

PAOH PRESIDENT’S LETTER - The Role of HELEN Journal

Dr. Steven Perlman, 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.”

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Helen Journal Helen Journal

The Disabled Demigod: Lessons from Hercules

Dr. Rick Rader, HELEN Journal Editor-in-chief: “Alzheimer’s disease is currently ranked as the seventh leading cause of death in the United States and is the most common cause of dementia among older adults. The prevalence of Alzheimer’s disease in the United States is growing, with an estimated 6.9 million Americans age 65 and older living with the disease in 2024.”

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Helen Journal Helen Journal

Unlocking Behaviors: Hearing Changes

Jane is a 66-year-old woman with a moderate intellectual disability who has been living in a group home for the last 20 years. She has always been known as a friendly, outgoing person with a happy disposition. Over the past couple of years, her support staff has noted that Jane has become less interactive and less interested in socializing. She also seems to be less responsive to others, and sometimes she startles easily when approached. She used to enjoy watching television but has lost interest in this as well.

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Helen Journal Helen Journal

MORE FROM THE STACKS

Los Angeles, CA, Nov. 12, 2024 - The Special Needs Network (SNN) has received an additional $11 million from the California Department of Developmental Disabilities (DDS) to expand its pioneering C.O.R.E. (Centering Opportunities, Resources, and Equity in Early Intervention) program. Administered by the Lanterman Regional Center, this funding will enhance SNN’s innovative workforce development initiative, aimed at training and placing BIPOC clinicians in behavioral and allied health roles to tackle systemic inequities in California’s healthcare workforce.

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Helen Journal Helen Journal

ANNIE’S PAGE

Meet Annie Sullivan’s League’s Honoree, Natalie Caliste, who has been working in the direct support professional field for 40 years, began working with Aisha Jackson in Philadelphia 13 years ago. “At first, Aisha was very shy, but not anymore.” As Natalie gained Aisha’s trust, she began to feel safe and developed a relationship with her that extended well beyond a working one.

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