VOLUME 1 | ISSUE 1
JUNE 2020
The Official Journal of AADMD Future Leaders
ONE VOICE
FEATURED CONTENT
04
A DVOCATING DURING A PA NDEMIC When Covid-19 widened the gap between people with IDD and adequate healthcare, AADMD students & residents Answered the call for advocacy.
10
A TA LE OF T WO SIS T ER S 2020 graduate, Dr. Shannon Strader may have 3 degrees, but her greatest title will always be twin to her sister Lauryn.
20
SERVICELE A RNING In 2019, the AADMD student chapters at the University of Texas School of Dentistry and Baylor College of Medicine combined to create the Houston Texas Medical Center (TMC) AADMD chapter.
32
T E A M T R AINER TOOLKIT Introducing the Team Trainer Toolkit - a partnership between the University of Rochester & Special Olympics New York.
18
A S TA BLE PA R T NER S HIP The AADMD chapter of University of Nebraska Medical Center partnered with the Heartland Equine Therapeutic Riding Academy (HETRA)
JOURNAL PROJECT LEAD It is my immense pleasure and privilege to introduce you to the “One Voice: Official Journal of AADMD Future Leaders”. We started working on this Journal about an eight months back with the vision in mind to enlighten and spotlight the wonderful work which is been carried out by the student chapters of AADMD all across the country. This was an opportunity for the Student/Resident committee (SRC) to introduce and express our gratitude to all the student chapters who have been carry out amazing work to educate and spread awareness about the intellectual and developmental disability population. About me: I was first introduced to AADMD back in 2017 when I first listened to Dr. Steve Pearlman (pictured right) at the Texas Dental Association (TDA) conference in San Antonio. I immediately reach him out as I was so inspired by his lecture on special needs dentistry. He then invited me to the AADMD Conference in Houston and that has created a huge impact on my life. I soon became part of Student/Resident board and there has been no looking back after that. Dr. Steve Pearlman has inspired, motivated and guided me so much both personally and professionally.
CONTRIBUTORS Mayank Kakkar, DDS Doug Wells, MD Alicia Thatcher, MD Steve Sulkes, MD Lauren Wells Camille Herzog Yeon-Whan Choe
As the Research Chair and Project lead for this journal, I would like to thank the entire team of journal committee who have worked tirelessly to execute this idea into the reality. The journal committee has three brilliant minds who were pillar for this project and my message will not be completed without mentioning their names, who are Dr. David Danesh, Dr. YeonWhan Choe and Dr. Vasundhara Dwarampudi, this would not have been possible without the help and support of you all. I would also like to thank SRC Chair Dr. Doug Wells and Co-chair Dr. Alicia Thatcher for giving me the opportunity and helping me out at every stage of this project. Last but not the least, I would like to give a big shout to the entire AADMD board members and SRC board members for the immense amount of support, encouragement and assistance that you have provided for this project.
Kim-Thy Nguyen
Thank you for giving us opportunity and I hope you will enjoy reading the amazing stories about our chapters.
Seth Woods
Farwa Feroze Presli Pilati Rachel Madey Austin Cummings Henry P. Mishek Mirna Rezkalla Fahra Dawood Anna Rovetto Shannon Strader, DO Sarah Tucker Durga Vasundhara Dwarampudi, BDS David Fray, DDS, MBA
Happy reading! Mayank Kakkar, DDS
ART DIRECTION
Research Chair – Student/Resident Committee
Courtney Fray-Dingemanse Chief Communications Officer, AADMD
©2020 AADMD, a 501(C)3 organization. All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, or other electronic or mechanical methods, without the prior written permission of the editor, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uess permitted by copyright law.
FROM THE CHAIR & ASSOCIATE CHAIR We are very excited to publish our first AADMD Student and Resident Journal to highlight the progress we have made over the past 12 months. Each year, these future leaders are paving the way to ignite change and enhance care for all individuals with intellectual and developmental disabilities (IDD). With this journal, we hope to highlight the incredible work accomplished by the students and residents, their chapters, and the Student/Resident Committee as a whole. This year, we grew our numbers significantly through the addition of four new medical school- and two dental school chapters. We also reestablished relationships with the leadership teams from our previously existing chapters to enhance communication and collaboration between both experienced and emerging leaders. As a result, we now have over 40 active chapters and 1,500+ current AADMD members at the student and resident level both nationally and internationally. To accommodate this expansion, we added several positions to our national committee to ensure we could remain efficient, and our board now has 12 positions serving the AADMD members. As learners transition to new roles in their training or careers, we look forward to adding new passionate and dedicated leaders to our team. We are very proud of what our national committee has achieved this year. We hosted Virtual Grand Rounds on many important topics impacting care for individuals with IDD including oral, mental, and sexual health, trauma-informed care, and reducing common barriers to accurate health assessments. We adapted the “Spread the Word: Inclusion Movement” from Special Olympics to develop a week-long national movement for chapters to promote inclusion within their schools and communities that will benefit not only those with IDD but all individuals. Currently, we are collecting data from the National Curriculum Initiative on Developmental Medicine (NCIDM) to establish a “toolkit” that will help students implement curriculum dedicated to providing better care for individuals with IDD, and we are hoping to have it available later this year. Our students and residents are strong advocates, and they are the future leaders who will change the landscape for the care of all individuals with disabilities. We believe you will recognize this as you read about the insight they have gained and the meaningful actions they are taking in our journal. Thank you and congratulations to all of our committee members, student chapters, and individual advocates for your hard work and dedication. We look forward to continuing our efforts together.
Sincerely, Doug & Alicia Douglas Wells, MD Chair, AADMD Student/ Resident Committee
Alicia Thatcher, MD Associate Chair, AADMD Student/ Resident Committee
O N E
V O I C E
Official Journal of AADMD Future Leaders
FROM THE PRESIDENT Most readers of this journal will be aware of the primary mission of AADMD: to be sure that people with Intellectual and Developmental Disabilities, across the lifespan, can be as healthy as possible, to maximize their participation in all aspects of life. AADMD’s members work to achieve that mission through: 1.
Identifying strategies to improve access to quality health care, including oral, visual, physical, and mental health
2.
Development and sharing of evidence-based health guidelines
3.
Expanding the universe of providers with knowledge, skills, and attitudes needed to effectively serve this population through continuing education activities and inclusion of curriculum in training programs.
4.
Advocating for improved care at levels from the individual, to communities, to systems, to government policy
Of all of these (by the way, did you notice the acronym IDEA?), our training goal is undoubtedly the most important and the most successful. This journal is the latest evidence of that success. That our motivated trainees are ready to share their knowledge, skills, and attitudes so exuberantly says to me that our efforts are paying off, with interest! People of my generation came to the world of IDD through circuitous routes. There were few role models for us, and whatever they taught us in our professional education, as often as not, devalued people with IDD and those who served them. It has taken a generation to get to the point in which we partner with our patients to plan their care collaboratively in the spirit of “Nothing about me without me,” but this approach is now basic to our practice. Even as I applaud the effort and thought that has gone into production of this journal, I have one more indulgence to ask of all of its readers: If you are inspired, challenged, incensed, or otherwise engaged by what you read here, please consider getting involved in AADMD as a regular member when you can. We need more voices, more perspectives, more leaders. More YOU!
Stephen Sulkes, MD
2
AADMD Preseident Dr. Steve Sulkes (left) with Tim Shriver (Right), Chairman of the Board, Special Olympics International.
3
O N E
V O I C E
Official Journal of AADMD Future Leaders
ADVOCATING DURING A PANDEMIC WHEN COVID-19 WIDENED THE GAP BETWEEN PEOPLE WITH IDD AND ADEQUATE HEALTHCARE, AADMD STUDENTS & RESIDENTS ANSWERED THE CALL FOR ADVOCACY.
Words:
Photos:
Lauren Wells
Rick Guidotti, Positive Exposure
4
5
O N E
V O I C E
Official Journal of AADMD Future Leaders
The year 2020 and the COVID-19 pandemic
The second petition raised issue with allocation
brought many issues of healthcare to the forefront
guidelines that suggest the presence of a congenital
of our minds. With it, blanket policies about personal
syndrome, intellectual disability or developmental
protective equipment (PPE), hospital visitation, and
disability may be reason to deny a person life-
rights to a ventilator effectively widened the gap
saving ventilator support. Especially in the time
between people with IDD and adequate healthcare.
of COVID-19, the petition supports the AADMD
Education about how the pandemic, and these
statement that the presence of an intellectual or
policies, affected this patient population was of the
developmental disability must not be used as a factor
highest priority. Students and residents adapted their
for determining life expectancy or quality of life
regular “Virtual Grand Rounds” webinar series to
and, furthermore, must not be used as an exclusion
the topic of COVID-19, drawing a record number of
criterion for ventilator support or the allocation of
viewers.
resources.
In addition, the Student Resident Committee for
After one month, the Ventilator Rights petition is
the AADMD was quick to stand behind the advocacy
nearing its goal of 1,500 signers at 1,225 signatures
efforts of a team of AADMD advocates including Dr.
and 42 official signatories.
Rick Rader, Dr. Seth Keller, Dr. Michelle Cornaccahia, and others. Among the results were two petitions. The first petition addressed the “No Visitors”
to engage organizations that support people with
policy adopted by many hospitals to curb the risk
IDD and encouraged them to sign on as official
of spreading the virus and preserve PPE – a policy
signatories, and compiled news coverage and state
that uniquely affects people with IDD. Many people
policy updates for reporting out to supporters. Their
with
advocacy is invaluable to the present and future work
IDD
have
limited
verbal
communication
skills, difficulties with understanding consent and situational trauma with unfamiliar settings. Caregiver support is necessary under normal circumstances, and even more so in a hospital teeming with stressed, emotionally harried staff on the frontlines of a global pandemic. The Visitation Rights petition saw incredible success in its first days and weeks – coming in at just over 45,000 signatures and 58 official signatories in its first month.
6
Students and residents took to social media to promote these petitions, utilized their network
of the AADMD.
7
O N E
V O I C E
Official Journal of AADMD Future Leaders
CONNECTING WITH PATIENT S INSIDE AND OUTSIDE OF THE CLINIC.
Boston Children’s Hospital Down Syndrome
Students realized that a condition carries more
Program provides patients with Down Syndrome
than just medical ramifications for care. Depending on
with access to individualized, specialized health
the patient’s age and history, clinicians tailored their
services. The Down Syndrome Program supports
approach to target different sociocultural aspects of
patients in the the medical, legal, and social aspects
care including accommodations at school, sibling
of their diagnosis. In partnership with the Down
relationships, availability of support resources and
Syndrome Program, first-year dental and medical
programs, economic challenges, and the logistics of
students from Harvard shadowed nurse practitioners
transitioning into legal adulthood. Students gained an
and physicians during clinical interactions. This
appreciation for “whole-patient care.” In extension,
experience showed students how individualized
whole family wellness was emphasized as clinicians
medicine can transform a patient’s trajectory.
inquired about the caregiver’s ability to adapt to the
Student
participants
commented
that
they
appreciated “seeing how clinicians adapted their approaches and interactions with different patients,” and that they gained a better appreciation for “the
disability and provided different skills and strategies that could be employed to support and promote their child’s autonomy.
spectrum of a disease [after seeing] two patients
In conjunction with this shadowing program, our
with the same diagnosis but widely different physical
AADMD chapter organized a dinner and craft session
and intellectual abilities…as a reminder that while
to meet families in the community with children with
a diagnosis can be helpful, it does not give you the
special needs outside the confines of the clinic. Many
full picture.” Described as “an essential, wonderful
of the attendees were patients at the Down Syndrome
shadowing experience,” students also saw Boston
Program. Along with dental and medical students,
Children’s commitment to whole-person wellness by
we also welcomed members from the Developmental
employing individuals with disabilities at the Down
Medicine department at Boston Children’s to learn
Syndrome Program; this is a valuable example of how
more about their career trajectory and how students
we, as future health providers, can staff our clinics to
may be able to follow suit.
be consistent with our values.
Words:
Photos:
Camille Herzog
Courtesy of Camille Herzog
8
challenges of raising a child with a developmental
Camille Herzog and Isaiah Lombardo during the Community Dinner in May 2019.
9
O N E
10
V O I C E
Official Journal of AADMD Future Leaders
A TALE OF T WO SIS TERS (TWINS TO BE EXACT)
It’s likely we have all, at some point in our lives, turned to a physician for guidance, knowledge or inspiration. We’ve asked: Can you help me? What do you think? Will I get better? We look to them because their choice to dedicate their lives to helping others is meaningful, and we expect their honesty, compassion and respect regardless of who we are. Any patient would feel uneasy or neglected if their trusted physician refused to treat them, claimed they couldn’t or didn’t know how to interact with them, spoke only to their spouse/parent/caregiver, or used outdated and offensive terminology to describe them or their condition. Sadly, these occurrences are commonplace for individuals with intellectual or developmental disabilities (IDD) and they’re not limited to the healthcare space. In fact, 2020 Lincoln Memorial University – DeBusk College of Osteopathic Medicine graduate and future Physical Medicine and Rehabilitation resident, Shannon Strader, found her motivation for serving
Words:
Photos:
Shannon Shrader & Lauren Wells
Courtesy of Shannon Strader
the IDD population after an incident with a physician at “The Happiest Place on Earth”. Twenty years ago, Shannon Strader and her family were enjoying the last vacation they would get to take with Shannon’s twin sister, Lauryn, at Disney World. Lauryn, as Shannon describes her, was “the smartest person [she] had ever met”. “[Lauryn] spoke so loudly with eyes and body language. She was always ready for a good laugh, and her smile was contagious.” Shannon said of her sister. “She was my greatest teacher in empathy, kindness and acceptance.” Lauryn was diagnosed with meningitis at 20 days old, and was also later diagnosed with Cerebral Palsy. The Strader family had encountered more than their fair share of people who treated Lauryn differently because of her condition, but none so meaningful to Shannon as the one on this magical vacation. A stranger, who identified himself as a physician,
11
approached the family and began making disparaging
became involved in the AADMD Student Resident
comments about Lauryn, including calling her the
Committee, through which she says she has
“R” word. Knowing what the “R” word had come
developed relationships with the most passionate
to represent, Shannon couldn’t believe a physician
and kind mentors, physicians, and friends.
could use it to describe her sister, whom she revered as incredibly smart and capable.
“It can be difficult to find a solid support system within
a
competitive
occupation,
but
AADMD
Shannon knew what a good physician should be,
represents not only inclusive health extremely well
and she quickly understood that the man before her
but also what it means to be an emotionally intelligent
was not it. In that moment, she promised herself
healthcare professional.” says Shannon. “To me,
she would become a physician, and she would
AADMD is changing healthcare for the better, and
emulate behavior completely opposite of that man
it is invigorating to be a part of such a wonderful
by protecting families like her own and patients like
organization!”
Lauryn.
Shannon is excited to be starting her residency in
“That promise I am keeping forever!” says
Physical Medicine and Rehabilitation at the University
Shannon, who has since earned 3 degrees, including
of Louisville this summer, under the wings of fellow
her doctorate. Her plans for the future include
AADMD advocates. On behalf of the AADMD and the
specializing in Developmental Physical Medicine
Student Resident Committee, we congratulate Dr.
and Rehabilitation while performing translational
Strader on this enormous accomplishment! Though
research on cerebral palsy and developmental
she can now add the coveted “D.O.” behind her name,
disabilities.
Shannon’s favorite title to carry with her is still twin
During her time in medical school, Shannon
sister to Lauryn.
13
O N E
V O I C E
Official Journal of AADMD Future Leaders
F E A T U R E
THE COS T OF BIAS 14
Words:
Photos:
Anonymous
Rick Guidotti, Positive Exposure
15
O N E
V O I C E
Official Journal of AADMD Future Leaders
The Cost of Bias in Medical & Dental Education
“Wow, we must not have the same idea of what a mild intellectual disability is!” “I can tell by looking at him that he will not be able to sit for a 45-minute stretch.” “We should not have to provide accommodations if they cannot meet the same standards as you or me,” says an able-bodied, medical school faculty member. These are a few of the poignant statements that came out of a trial standardized patient experience I helped coordinate for second year medical students. If you’ve had experience caring for a medically underserved population, you know these comments are abundant and can often be even more insensitive and ignorant. Medical students receive little to no training on providing care for individuals with intellectual and developmental disabilities (IDD). In fact, most students never have an interaction with someone with an IDD until they are in a clinical space, resulting in unease for both the student and patient and compromised quality of care. I saw a potential solution in implementing a standardized patient experience for second year medical students. The concept was straightforward - bring in standardized patients with IDD for four, 45-minute sessions in which three students and one volunteer physician would practice their skills on obtaining vital signs. Patients would be given a 15-minute break between sessions. However, what felt like simple and necessary tasks were swiftly met by implicit biases under the guise of concern for nitty-gritty details.
16
would only financially support our endeavor on two conditions. First, the event would be optional for medical students. Second, the standardized patients with IDD would be volunteers. With these conditions, the project was bound to fail. Making the event optional defeated our purpose of ensuring every student has exposure to individuals with IDD, and medical schools historically have poor turn out for optional events given the workload of their students. As far as compensation, our plan was to recruit simulated patients from our local ARC for one of the already scheduled, mandatory sessions. Therefore, there was no extra cost incurred because we could compensate the ARC recruits with the funds already allocated for hired actors, creating sustainability as well. The school was eventually swayed to these terms. After clearing the financial hurdles, our team felt the worst was behind us. To our surprise, the event planning and day-of details revealed the majority of the bias. To preface, at this stage of the planning, no one on the simulation center committee had met any of the ARC members being considered, nor had any of the ARC members been contracted. From the first meetings, it was clear most of the committee was under the impression that individuals with IDD were incapable of sitting for the 45-minute sessions, wherein they would only be having their vitals checked. The committee assumed, then, the patients wouldn’t be able to tolerate having their vitals checked so many times – naïve to the fact that these individuals have likely had their vitals checked
With any new initiative, financial unknowns
more than any able-bodied individual of the same age.
would need to be addressed first and foremost. Able-
And if they could sit through the sessions and have
bodied standardized patients are usually hired actors,
their vitals checked multiple times, would too much
compensated by the medical school. The school
touching from the students cause them to “make a
scene”? These concerns painted a clear picture of the understanding, or lack-thereof, of this population. Amidst the fear and doubt, it was decided only “high functioning” individuals or those with mild to moderate intellectual disabilities would be considered. Thus, we turned to the ARC to provide us with individuals that participate in the most community events and/or hold jobs. We invited them to the school to be trained and hired, and to our dismay, biases showed and cast the event in an even bigger shadow of doubt in the committee’s eyes. I’ll summarize by reminding you of the quoted comment above: “Wow, we must not have the same idea of what a mild intellectual disability is!” Following the training session, the implicit bias in medical education was quantified by the simulation center committee. After observing the individuals, one faculty member said they would feel more comfortable if 10 typically developing actors, in addition to the 15 ARC members (10 for the session and 5 back-ups), were hired to be back-up to the back-ups. The cost for these actors, a total of $1,000, would need to be covered by the grant being used to fund the event. It was clear the simulation center committee would only be comfortable if we provided enough typically developing individuals to be there if every single person with an IDD failed to complete the sessions. The persistence of a couple of medical students, myself included, and a devoted faculty member paid off in the form of a successful event. Only one out of five of the ARC back-ups were utilized, meaning all 10 of the typically developing actors sat aside for the entire day, and were paid accordingly. In the end, it cost $1,000 for medical students at one school to have one interaction with an individual with IDD throughout their four-year medical education. While there is a growing desire to add curriculum that will educate students on how to care for this population, the numbers show biases within medical school faculty will continue to negatively affect progress. Despite these biases, the energy and passion from those advocating for improved health care in this population will prevail and one day, there will no longer be these barriers to quality, patient-centered care.
O N E
V O I C E
Official Journal of AADMD Future Leaders
A S TABLE PARTNERSHIP At the beginning of the fall semester at the University
verbal communication. A lack of awareness of our own
of Nebraska Medical Center (UNMC), students and staff
body language and that of others can be detrimental
are greeted with the We Are UNMC Welcome Back BBQ.
to relationships with patients, family, and friends
This event takes place in the Ruth and Bill Scott Student
who rely on and are more perceptive of non-verbal
Plaza in the middle of the Omaha campus, and includes
communication. Next, we groomed the horses, learning
food, music, businesses and vendors, and information
to appreciate their unique traits and further practicing
booths for student interest groups. The AADMD student
our communication skills. Finally, teams of two students
chapter at UNMC is called the Student Alliance for
led the horses through an obstacle course designed to
People of All Abilities, and this year we hosted one of
test our ability to silently communicate our intentions
our favorite community organizations, the Heartland
to each other and to the horses. This experience is one
Equine Therapeutic Riding Academy (HETRA) at our
that we look forward to repeating in the future, with
table. HETRA serves our surrounding community of
the goals of improving our communication skills as
people with disabilities with services including therapy
caregivers and providing a means for students to work
on horseback and more. Our student group has had the
alongside a unique community organization that may
privilege of forming a partnership with them in 2019,
be impactful for friends, family, and future patients. In
which we hope will carry on into the future. Two of
the coming months, we hope to provide regular monthly
HETRA’s representatives made an appearance at the
transportation to Gretna for students to be trained
barbecue, the miniature horses Blue and Stormy.
and to volunteer as “sidewalkers,” a vital role which
In early December, we made our second visit of 2019 to Gretna, Nebraska, where HETRA is located. HETRA graciously invited students from all UNMC programs to come along for a free tour and training experience geared toward students in health care professions. We first studied horse communication patterns, which provided great lessons for those of us who often overlook non-
Words:
Seth Woods, MD Candidate 2022 18
ensures that HETRA’s clients stay safely upright on the saddle while they participate in equine therapy. Through continued collaboration, we hope to support our partner in the community while also learning skills to better engage and communicate with those who HETRA serves.
19
O N E
Students from UTHealth School of Dentistry, the University of Houston and Baylor College of Medicine provided care to the Special Olympics Athletes.
20
V O I C E
Official Journal of AADMD Future Leaders
SERVICELE ARNING IN 2019, THE AADMD STUDENT CHAPTERS AT THE UNIVERSITY OF TEXAS SCHOOL OF DENTISTRY AND BAYLOR COLLEGE OF MEDICINE COMBINED TO CREATE THE HOUSTON TEXAS MEDICAL CENTER (TMC) AADMD CHAPTER.
Our chapter now includes dental, medical, and
Olympics athletes. One of our medical student members,
physician assistant students. During our first year as a
Alex Alexander, remarked about Healthy Athletes: “I
combined chapter, we hosted a few events. These events
have learned more about this population and their
included lectures from medical and dental providers
specific health needs, while gaining skills that I can apply
experienced in caring for individuals with intellectual and
throughout my future career.” Volunteers learned about
developmental disabilities (IDD) and volunteer events
the challenges and needs specific to this population’s
with community partners serving adults with IDD. We
health. Leia Tarbox, a physician assistant student, valued
strive to educate students interested in improving care for
the interprofessional experience that AADMD provided:
individuals with IDD to engage in discussion, advocacy,
“I have found that my involvement in this organization
and education in developmental medicine and dentistry.
has grown not only my knowledge about adults with
Hands-on experiences serving this population provides
developmental disabilities, but also how to work with
students with skills that will better prepare them to care
dentists and physicians in the care of this population.” As
individuals with IDD and provide opportunities for active
our chapter continues to grow this year, we look forward
service-learning in our own Houston community. Our
to continuing to provide opportunities for our students to
most successful event last year was volunteering with
grow through service-learning.
Healthy Athletes for the Special Olympics. Our chapter volunteered at both the Spring and Fall East Texas games in 2019, providing health screenings and oral health care education for athletes participating in the games. Our
Events to highlight: •
Healthy Athlete Screenings, October 5, 2019
•
Visit to Brookwood Community, November 2, 2019
volunteers were able to engage directly with a population that they otherwise may not get much experience.
•
Lecture
by
Katie
Hanley
“Understanding
Volunteers connected with athletes and discussed their
Sexual Health of People with Intellectual and
health concerns, answered questions about fitness
Developmental Disability”, November 19, 2019
and nutrition, and learned about their lives as Special
Words:
Photos:
Rachel Madey, MD Candidate 2021
Courtesy of Rachel Madey 21
O N E
V O I C E
Official Journal of AADMD Future Leaders
COMMUNIT Y OUTRE ACH MEDICAL COLLEGE OF WISCONSIN’S FRIENDS FOR SPECIAL NEEDS COMMUNITY OUTREACH
Wisconsin-Milwaukee
Our third event of the fall semester was with the
AADMD student chapter hosted four events for the
The
Medical
College
of
Autism Society of Southeastern Wisconsin (ASSEW),
2019-2020 school year. The first of the year was the
where we planned a Learning and Skills Night. This was
Down Syndrome Walk at the Milwaukee Zoo held by the
an event for advocates from ASSEW, who are individuals
Down Syndrome Association of Wisconsin (DSAW). We
with autism. The event was hosted at the Medical College,
volunteered at this event where DSAW planned an entire
with loads of board and card games, so advocates and
celebration and fundraiser for the Down Syndrome
their parents could connect with other advocates
community, bringing in thousands to participate in the
and medical students. Our hope was to increase their
festivities. We spent time setting up the infrastructure
comfort with the medical community. We provided a full
for the event, getting team shirts ready, and preparing
dinner and, new to this year, an additional educational
the food for the day. After the festivities, the teams and
component to the program. We laid out common
advocates had the Milwaukee Zoo to themselves for the
medical equipment, such as blood pressure cuffs and
afternoon to explore and enjoy.
stethoscopes. The medical students acted as patients and
Our next event was MedFest in Central Wisconsin, where we participated with health care providers in the area and Special Olympics workers to provide sports physicals for the athletes. The whole day was set-up for the athletes to obtain an accessible and easy sports physical from providers that have experience working with people with special needs. The medical students acted in a one-on-one role with the athletes, gathering personal and medical histories, taking vitals, and aiding in the actual physical examination. Special Smiles was also present, which provided dental screenings and basic preventive care. After their physicals, the athletes participated in bowling events as part of the Special Olympics.
Words:
Photos:
Austin Cummings, MD Candidate 2022
Rick Guidotti, Positive Exposure
22
the advocates were given the opportunity to use some of the equipment. The advocates got more comfortable with the instruments: what they measure and how to use them. It gave the advocates the opportunity to learn more about what to expect in an average doctor’s appointment in the clinic. It also gave our medical students the chance to get more experienced in explaining and providing care for individuals with autism. In addition to the mock physicals, we had gross anatomy samples of hearts and brains for the advocates to explore. There was also a radiology quiz, where they had a chance to see what different portions of the body looked like under a CT or X-ray.
The last event of the fall was a joint fundraiser between Medical College of Wisconsin and the Marquette University Dental School, where we played trivia and hosted a cash raffle to raise money for DSAW. Both schools benefit from learning from different perspectives and developing a greater collaboration between our two organizations. It not only serves to benefit us as professionals, but also the special needs community as a whole. In the spring, we are planning three events, including another Learning and Skills night with the Down Syndrome Association of Wisconsin, a Special Needs Community Leadership lunch talk, and a lecture on how to deliver a compassionate and understanding diagnosis of Down Syndrome to expecting parents.
23
O N E
V O I C E
Official Journal of AADMD Future Leaders
CURRICULUM GAP ADDRESSING THE IDD CURRICULUM GAP WITH NEW A ELECTIVE AT TOURO UNIVERSITY
In attempt to address the gap in the Touro University CA
SOM
disability
was started the year before. As a first-year student,
education, AADMD Touro CA developed an 8 session
Kim-Thy Nguyen, who was looking for individuals
elective for medical students to explore the complex
like myself who were also passionate about working
range of topics required to prepare healthcare providers
with the developmental disabilities population, got
to face the multifaceted challenges in caring for people
connected with a second-year osteopathic student, Kat
with ID/DD as well as the health disparities that manifest
Winger, and a Masters student, Gianna Brown, from
into barriers to medical care, community participation,
the Pediatrics Club on campus to start organizing a
and health promotion activities in the ID/DD population.
brand-new lunchtime speaker series.
Offered mainly to the College of Medicine students for
lecturers were invited ranging from a Developmental-
pass/no pass credit for the elective course, students
Behavioral Pediatrician, 2 Touro professors who were
from all programs at Touro were welcome and highly
also pediatricians, and a parent of an individual with
encouraged to attend any lecture to contribute diverse
autism spectrum disorder (ASD) to come speak on
and interdisciplinary perspectives that are crucial to the
campus. Building off of the four-part speaker series
future multidisciplinary healthcare team needed to care
structure, the three students brainstormed objectives
for the complex needs of this unique patient population.
and came up with a mixed structure of eight lecture and
This
curriculum
student
for
initiated
developmental
expanded from the lunchtime speaker series that
and
organized
elective
Various guest
panel-style sessions as well as thought of potential guest
Words:
Contributors:
Photos:
Yeon-Whan Choe, DO Candidate 2022
Farwa Feroze Presli Pilati
Courtesy of TUCOM AADMD Chapter
24
Kim-Thy Nguyen, DO Candidate 2022
speakers to speak at certain sessions. Eventually, the group
1.
Understand the general etiology, risk factors,
of three expanded to include three more members--Joseph
and
Choe, Farwa Feroze, and Presli Pilati, who also helped us
developmental disorders.
with the crucial process of writing up the course syllabus + objectives, course requirements, and finalizing the details
2.
spring semester of 2019 and finally got the course approved
3.
•
and
compare
different
types
of
developmental disorders and how care needs change over time. -Intro
to
Developmental
Disabilities (Touro University) •
Understand
and understand the lifelong trajectory of common
The speakers included: Wolf
Apply knowledge of typical development to be able
a multidisciplinary team in the ID/DD community,
the elective.
Kimberly
common
interventions often utilized and implemented with
Qazi was essential in reserving rooms and advertising for
Dr.
of
population.
in July. Other members of the AADMD board, such as Areeba
•
factors
to recognize developmental delays in the pediatric
of each session. We continued the correspondence with Dr. Wolf in finalizing the syllabus to get it approved throughout
protective/resilience
4.
Look at developmental disabilities from the perspective of structural competency, including the
Dr. Clarissa Kripke - Ensuring Quality Health
historical context of the disability rights movement
Outcomes (UCSF)
and evolving disability language.
Dr. Robert Hendren -Evolution of Autism Spectrum
5.
Develop communication skills for interacting
Disorders (UCSF)
with patients in the ID/DD community and their
•
Dr. Miriam Menzel -Evolution of Down syndrome
families that is respectful and appropriate for their
•
Dr. Marsha Saxton (UC Berkeley)
•
Dr. Lannon, Angela, and Michael from the Special
developmental level. 6.
individuals with developmental disabilities and
Olympics Healthy Athletes Ambassador Panel •
how these impact medical decision making, and
Ms. Stacey Martinez (Associate Executive Director
recognize the need for inclusion of individuals with
of The Arc-Solano); and Ms. Leslie Crisostomo, RN, and Dr. Hemaluck Suwatanapongched from the North Bay Regional Center-Interprofessional Panel Course Learning Outcomes:
Analyze the legal and financial complexities for
disabilities in public health efforts. 7.
Appreciate how the osteopathic tenet of body/ mind/spirit unity can be incorporated into clinical practice in order to facilitate whole-person care and
Organized, brief, clear description of course level
optimize quality of life for all patients, including
objectives: “Students successfully completing this course
those in the ID/DD community and recognize
will be able to (or will know, demonstrate, etc.)”
benefits of OMT in this population.
25
O N E
Chapter Board Member Henry Mishek starting introductions at the first ever Deaf Community and Healthcare Accessibility workshop
26
V O I C E
Official Journal of AADMD Future Leaders
ACTIONS SPE AK LOUDER THAN WORDS LEARNING ABOUT DEAF CULTURE AND HEALTHCARE
Personal experiences with patients often remind medical providers of the challenges that people face every day as they navigate through the health system. One demographic has gone unnoticed. Our student chapter at University of Nebraska Medical Center (UNMC) has piloted a curriculum of 8 workshops entitled “The Deaf Community, Accessibility and Language: An Exploration of Cultural, Competency for Future and Established Healthcare Professionals.� These workshops include didactics about deaf culture and healthcare accessibility issues as well as instruction in American Sign Language (ASL) with an emphasis on medical vocabulary. It is aimed at giving healthcare professionals the skills they need to establish empathy and trust with a community that is often forgotten, even though ASL is purported to be the third most used language in the United States. S The curriculum was developed by Ronda Rankin, a nationally certified health care sign language interpreter. The curriculum is presented by both Ronda and April Kammerer, a registered nurse and member of the deaf/hard-of-hearing community. Sessions have been attended by students from all across the university: College of Medicine, College of Nursing, Physician Assistant, College of Public Health, Physical Therapy, and Graduate Studies.
Words:
Photos:
Henry P. Mishek, MD Candidate 2021
Courtesy of Henry P. Mishek 27
O N E
V O I C E
Official Journal of AADMD Future Leaders
SPRE AD THE WORD
TO END THE WORD - THE R-WORD
The “R-Word,” is a word that is difficult for me to allow out of my mouth or even to type with my fingers. A word once used in medical vocabulary to describe a less advanced state in mental, physical, or social development, is now more commonly used among many to mean anything from a derogatory term towards someone or something, to simply something one thinks less of. “Retarded.” It is now a word used often, and frequently without thought. I am not sure which is worse: using the word with intentions of harm or using the word flippantly with no ill intention at all. My passion for ending the use of this word stems from my work as a caregiver for a boy with special needs. Before this, I did not fully understand the impact this word could have, and I am sure I was even guilty of using it every now and then. People around me used it often, and I did not think much of it, but after beginning my work as a caregiver, I quickly recognized its power. The boy I worked with is non-verbal, meaning he uses very limited verbal communication. However, this does not mean he cannot comprehend language. He very clearly understands when you speak to him and will respond appropriately. Even though no one could definitively say if his feelings were hurt by anyone’s’ thoughtless remarks, blatant stares, or rude actions, those close to him see how he feeds off that negative energy. Being a part of his life, opened mine to many more experiences with people with intellectual and
Words:
Photos:
Sarah Tucker
Rick Guidotti, Positive Exposure
28
developmental disabilities, where I often witnessed their hurt from other’s remarks and actions as well. The word when used, whether intended to or not, is perpetuating a stigma against individuals with intellectual and developmental disabilities. Not only is it hurtful and disheartening for someone to hear, It represents a false sense of reality that these individuals are any less intelligent or capable. If you are reading this, and the “R-Word” is often a part of your vocabulary, I would challenge you to think about why you choose this word among so many others. There are many ways to describe how we feel about things, but this word should not be included as one of them. I understand that it has become somewhat of a societal norm, and that is unfortunate. Your words hurt. I understand that if you have not experienced the pain that this word can bring someone, you may not be as motivated or inclined to remove it from your vocabulary, I was once in your shoes. However, I encourage you to remember that your words have impact in ways you may not always be aware of. I encourage you to think before you use such a powerful word and realize that you are not only potentially causing hurt, but you are perpetuating a stigma whether you intend to or not. There is a simple solution to this. Just stop saying it, and encourage others to do the same.
29
O N E
30
V O I C E
Official Journal of AADMD Future Leaders
OVER THE PAS T YE AR A LOOK AT THE AADMD CHAPTER FROM MEDICAL UNIVERSITY OF SOUTH CAROLINA JAMES B. EDWARDS COLLEGE OF DENTAL MEDICINE MUSC AADMD had a fantastic year full of volunteering and giving back to the community. Night to Shine is an event that is funded by the Tim Tebow Foundation around the county. This is a special night for both children and adults with special needs to enjoy a promlike experience. They dance the night away, get limo rides, get their hair done, their shoes shined, and most importantly get the best night of their lives. The Polar Plunge raised money for the Special Olympics in South Carolina in order to provide yearround athletic training and competition for both children and adults with special needs. Our chapter of AADMD at the Medical University of South hosted a raffle fundraiser, and we raised $238 in donations! This year, we also held the R-word Campaign to raise awareness to stop using the R-word in our everyday language. We had individuals from all the different colleges at MUSC sign the pledge and make a difference! To end the year, we had a Krispy Kreme Fundraiser to raise money for the HEART Inclusive Arts Community. HEART is a non-profit which provides visual arts, music, and performing arts mentorship and community engagement for adults with special needs. With our fundraiser, we were about to raise $100 in donations for HEART to sponsor their workshop show.
Words:
Photos:
Mirna Rezkalla, DMD
Courtesy of MUSC AADMD 31
O N E
V O I C E
Official Journal of AADMD Future Leaders
Team Trainer Contributors: Dr. Steve Sulkes| Dr. Fahra Dawood | Dr. Cynthia Wong | Dr. Stephanie Straka | Dr. Lisa DeLucia | Onolee Stephan| Sabrina Smith| Jennifer Ward | Strong Center for Developmental Disabilities | University of Rochester AADMD Student Chapter| The WITH Foundation| Special Olympics
Words:
Photos:
Fahra Dawood , MD
Courtesy of University of Rochester AADMD
32
TEAM TRAINER
TOOLKIT
A partnership between the University of Rochester and Special Olympics New York
TE AM TRAINER TOOLKIT
Currently available on the AADMD website (www.aadmd.org/toolkits) to download and use with your student chapter. While we know this resource has proven successful for athletic programs, it can also be used for setting healthy goals with any program.
INTRODUCING THE TEAM TRAINER TOOLKIT A PARTNERSHIP BETWEEN THE UNIVERSITY OF ROCHESTER & SPECIAL OLYMPICS NEW YORK. Reducing
health
disparities
for
people
with
Trainer program. The program made measurable strides
developmental disabilities is at the heart of all who
towards their goals. When surveyed, 65% of athletes view
interact and provide care for this population. Dr. Steve
the Team Trainer as an asset, 65% of coaches indicate a
Sulkes, a professor in the University of Rochester Medical
greater awareness of athletes health needs, and 75%
Center Department of Pediatrics, staff from Strong
of Team Trainers show a greater understanding of the
Center for Developmental Disabilities in Rochester, NY,
health needs of people with IDD.
and members of the University of Rochester student chapter of the American Academy of Developmental Medicine and Dentistry (AADMD), and Onolee Stephan of Special Olympics New York collaborated to launch the Team Trainer Project in 2013. The goal of the project was to increase athlete participation in Healthy Athlete
We’ve developed a Team Trainer Toolkit to guide AADMD student chapters through the process of beginning a successful Team Trainer Program. The goals of the toolkit are to: •
chapters and Special Olympic networks at the
screenings at Special Olympic events. As part of the program, AADMD students become Team Trainers who partner with the coach of an athletic team. The Team
local and state level. •
sustainable partnerships with their local and
their health care providers. For instance, Team Trainers
state Special Olympic Networks.
ensure that Special Olympic medical authorization •
screenings at Special Olympic events. Importantly, Team Trainers help athletes follow up with community health care providers, if needed. Just as an athletic coach supports the athletic goals of an athlete, the Team Trainer serves as a health coach – supporting, encouraging, and guiding athletes to meet their health goals. Student
Chapter
and
Strong
•
Provide a template for successful replication of the Team Trainer program.
The toolkit equips student chapters with sample scripts, a link to the Special Olympics website for their state, tips, and sample documents to duplicate at their discretion. It provides information for building rapport with athletes and coaches that supports
Over the past five years, the University of Rochester AADMD
Disseminate information at AADMD annual conference.
with athletes to create individualized health goals and personally assist athletes in attending Healthy Athlete
Provide AADMD student chapters with the resources necessary to implement and initiate
Trainer serves as a liaison between each athlete and
forms are accurate and up-to-date. Team Trainers work
Increase interaction between AADMD student
Center
for
Developmental Disabilities led an exemplary Team
lasting relationships and healthy lifestyle changes. Also, this toolkit includes our data for the last 5 years, demonstrating the success of our program.
33
O N E
V O I C E
Official Journal of AADMD Future Leaders
ELECTRIC TOOTHBRUSHE S & IDD CAN ELECTRIC TOOTHBRUSHES BE A USEFUL TOOL IN THE ORAL HEALTH CARE OF PATIENTS WITH IDD? AADMD has made a strong entrance at the University
with IDDs, specifically the difference between a standard,
of Buffalo School of Dental Medicine. Founded in 2018,
three-headed, and electric toothbrush. To measure the
the organization has continued to expand our outreach
effectiveness of the brushes, we will be tracking the
events each year, and collaborate with other groups
amount of plaque seen on our patients before and after a
looking for the same outcome: to expose, encourage and
month of use. All patients and their caregivers will receive
excite dental students to treat those with intellectual and
the same oral hygiene instruction and a chart to track the
developmental disabilities (IDD). This semester alone,
days they brush. In addition, we will measure outcomes
AADMD has begun a new research project through the
from a public health perspective by asking patients if they
University Pediatric Dentists, a large pediatric provider
liked their new device, and whether they enjoyed using it.
in western New York, and Best Buddies of Western New
Aside from the true effectiveness of the toothbrush, the
York to donate electric toothbrushes to a local Multiple
patient must enjoy their new toothbrush enough to use
Sclerosis (MS) organization. Our chapter also volunteered
it and reap the benefits! We believe the simple design of
monthly at Special Olympics’ Special Smiles. We are lucky
the toothbrush, which includes the size, softness of the
to have a passionate group of future dentists that believe
bristles, and vibration intensity, will influence whether
in inclusivity and proper care in our daily lives and within
our IDD patients will continue to brush their teeth. In
the world of medicine.
turn, the more they enjoy the device, the more likely they
Through the years, I have watched my family-friend with Down Syndrome struggle to improve her oral health, properly brush her teeth, and find a dentist that she feels comfortable with. She is one of the happiest people I know, until we talk about the dentist! Unfortunately, this struggle is common for those with IDDs; due to a lack of
are to brush their teeth and improve their oral health outside of the study. We hope this research will allow us to put together objective and subjective data that will give dentists better insight to what type of toothbrush is not only best for plaque control, but also the best accepted and enjoyed amongst IDD patients.
proper care and understanding, many of these patients
Our future steps include finding even better ways of
lack the knowledge, help, or proper products to improve
implementing dental care and oral hygiene instructions
their oral hygiene. Our research study will be looking at
to patients with special needs that is also both clinically
the effectiveness of different brushing devices for those
and emotionally helpful to them.
Words:
Photos:
Anna Rovetto , DDS Candidate 2022
Courtesy of Anna Rovetto
34
35
O N E
V O I C E
Official Journal of AADMD Future Leaders
DISABILIT Y DAY MEDICAL SCHOOL EDITION
As a third-year medical student, I yearned to learn the essentials of caring for individuals with disability. As I traveled from core rotations to away electives, I saw the lack of education in medical schools and residencies on first person language, the history of disability, and empathizing with patients with disabilities who face barriers. Andrew Villasenor (fourth-year medical student), Candyce Mehler (third-year medical student), and I applied for grants to integrate disability focused curriculum. With the support of our school, Lincoln Memorial University-DeBusk College of Osteopathic Medicine (LMU-DCOM), and a grant from the American Academy of Developmental Medicine and Dentistry, we organized the first Disability Day at LMUDCOM. Disability Day targeted medical students, physician assistant students, nursing students, and other health care providers to learn about the various aspects of providing care to individuals with disabilities. The Day featured lectures from experts in the field. Our hope is to reduce the disparity in health care for individuals with physical, intellectual,
Words:
Photos:
Shannon Strader, DO
Courtesy of MUSC AADMD
36
and developmental disabilities through educating future health care providers. I truly believe every person with a physical, intellectual, or developmental disability deserves comprehensive, respectful, safe, and accessible health care. Speakers included: •
Mary Dubon, pediatric physiatrist at Boston Children’s Hospital/Harvard Medical School/ Spaulding Rehabilitation Hospital
•
Priya Chandan, physician-scientist at University of Louisville who is the program director for the National Curriculum Initiative in Developmental Medicine funded by the CDC
•
Janet Shouse, program coordinator for the Intellectual
and
Developmental
Disabilities
Toolkit Project at Vanderbilt Kennedy Center, and mother of a young adult living with autism A panel of speakers from the Tennessee Department of Intellectual and Developmental Disabilities (TDIDD): •
Amy Ford, PT, clinic director, East Regional Office
•
Andy Wood, director, East Regional Office Behavior Analysis Unit
•
Danny
Ricker,
RN,
nursing
director,
East
Regional Office •
Kandace L. Turner, MS, CCC-SLP, therapeutic services team coordinator, East Regional Office
•
Shannon
Westerman,
licensed
psychological examiner •
Victor Schueler, MD, psychiatry specialist
senior
HOW I GOT INVOLVED
My association with AADMD began in 2017, when
My alliance with the Alzehiemer’s association and
I met my dearest friend Dr. Mayank Kakkar, who
my experience at Fairmont Hospice where I had chance
introduced me to this wonderful organization when I
to come across the challenges faced by patients with
shared the common interest of working for the welfare of
dementia has piqued my interest to contribute more to
the individuals with developmental disorders with him.
AADMD. I was impressed by the mission of AADMD, which
I was raised in a remote village in India and Since my childhood I have accompanied my father in several social welfare programs in my village, the sense of fulfillment and joy my younger self experienced every time I helped alongside my father made recognize that altruism represents the highest morality. As I accompanied him to several medical wellness programs, I have realized
is to improve the quality of healthcare for individuals with neuro developmental disorders and intellectual disabilities. The continuous efforts of AADMD to inspire and prepare clinicians to face the unique challenges in caring for people with ND/ID is an essential step which will help people with neuro developmental disorders by providing access to quality health services.
the importance of the healthcare provider in bringing
I strongly believe in the quote by Mother Theresa “I
awareness and the potential to make a positive impact
alone can’t change the world, but I can cast a stone across
on mankind. A learning mind to contribute to science,
the waters to create many ripples”. With this inspiration
and my artistic interest made me choose dentistry as a
I would like to continue my efforts and contribute to the
profession. Currently I am pursing Masters in Healthcare
mission of AADMD and inspire others.
administration at Texas Women’s University and continuing my efforts to become a dentist to contribute my services to the society.
Words:
Photos:
Durga Vasundhara Dwarampudi, BDS
Courtesy of Durga Vasundhara Dwarampudi, BDS
THE CHANGE WE DREAMED OF I want to acknowledge the effort of the AADMD Progress is being made in the dental health Student chapters, the leadership of Dr. Michelle education efforts. AADMD working with partners Cornnachia, Dr. Doug Wells, Dr. Alicia Thatcher has been successful in changing the CODA and Dr. Manyank Kakkar’s journal comittee as requirements for dental students. The ADA has well as others who helped in the development announced new requirements on competency in and publishing of our first One Voice Journal. As the Commission on Dental Accreditation (CODA) AADMD President Dr. Sulkes mentioned in his Standards to require dental students and dental vision for changing the health disparities for hygiene students to be trained to competently persons with IDD we must remember his acronym treat children and adult patients with intellectual IDEA - Identify strategies, Develop evidencedisabilities. AADMD is engaged to provide based health guidelines, Expand the IDD universe interdisciplinary curriculum guidance for medical and Advocate for improved care. Our AADMD and dental schools. We.welcome more partners in students and residents more than 1,500 strong are other disciplines. answering that call to close the gap in healthcare As you soak in the amazing disparity for people with IDD stories of this journal, imagine and they are doing it united in one a future with clinicians trained, voice for inclusive health. This is inspired and competent to the foundational vision of AADMD eliminate health disparities for inspired two decades ago by US adults with IDD. Imagine a future Surgeon General David Satcher. Reflect on these comments by with clinicians We are witnessing a growing Supreme Court Justice Ruth Bader movement in the dedication of trained, inspired Ginsburg. new professionals in IDD health. and competent to In her opinion for the Court Although longevity has in the Olmstead case, Justice eliminate health improved, health outcomes for people with IDD still results in disparities for people Ginsburg noted: “[D]issimilar treatment correspondingly exists disparity. This is compounded with IDD. in this key respect: In order to by the lack of mandated receive needed medical services, medical school curriculum to persons with mental disabilities teach competency in the provision of care to must, because of those disabilities, relinquish persons with IDD. It is important to take an participation in community life they could enjoy interdisciplinary approach to to improve health given reasonable accommodations, while persons for people with IDD. Clinicians must consider and without mental disabilities can receive the medical collaborate on vision, hearing, physical health, services they need without similar sacrifice… neurology, dentistry, behavioral and mental A state cannot choose to solve a fiscal crisis by health, gastrointestinal conditions, and address taking steps that impede integration when other the concern of chronic poly pharmacy. Each of available solutions would promote integration.” these areas requires expertise specific to patients
“
with IDD - united in one voice and mission. The unique health needs of people with IDD who are aging requires additional preparation of health care professionals. Both dentistry and medicine lack corresponding adult specialty training to developmental pediatric education.
Healthcare for persons with IDD is a civil right.
To our AADMD future clinicians, thank you for being the change we have so long dreamed for and hoped would come.
Sincerely, David Fray, DDS, MBA AADMD VP of Education
39
SUBSCRIBE Subscribe at www.aadmd.org/journal
C ONTACT US For general inquiries, write to communications@aadmd.org
SUBMISSIONS If you’d like to contribute, email us at communications@aadmd.org
SPONSORS To enquire about advertising or sponsorships, get in touch at communications@aadmd.org