Kerry Mauger
The Arc of the United States
The Arc promotes and protects the human rights
of people with intellectual and developmental
disabilities and actively supports their full
inclusion and participation in the community
throughout their lifetimes.
Founded in 1950 by a group of parents
motivated to change public perception of
children with disabilities
Largest national community-based
organization advocating for and serving
people with intellectual and developmental
disabilities and their families
700 Chapters in 48 states serving
1.5 million individuals
Ann Cameron Williams
Principal Investigator
Karen Wolf-Branigin
Project Manager
Kerry Mauger
Training Coordinator
Casey Nitsch
Grant Proposal Manager
Jenny Sladen
Senior Project Associate
Robert Lutz
Research Assistant
People with IDD tend to be less healthy than the general
Significant problems include:
 Poor oral health
 High rates of obesity
 Substance abuse and mental health problems
 Vision and hearing loss
 Women’s health issues
People with IDD are the most medically underserved
population in the country
Individuals with IDD are…
 2 to 7 times more likely to have dental
 4 times more likely to experience a mental health
 Twice as likely to be considered obese in
comparison to the general population (55%)
Many of these health problems can easily be
treated or prevented
Adults with disabilities are
3 times more likely to have
heart disease, stroke, diabetes,
or cancer than adults without
Nearly half of all adults with
disabilities get no aerobic
physical activity.
Adults with disabilities are 82%
more likely to be physically
active if recommended by their
Adults with disabilities who get
no physical activity are 50%
more likely to have certain
chronic diseases than those who
get the recommended amount
of physical activity.
People with IDD disproportionately experience barriers to receiving
quality healthcare
These barriers include:
 Cost of healthcare; including regular checkups
 Lack of adequate insurance coverage for individual needs
 Lack of accessible information regarding healthy habits or navigating
health care systems
 Lack of training for health professionals:
 Communication difficulties
 Overemphasis on disability
 Discrimination and stigmas associated with IDD
Many of the conditions that affect people with
IDD are unrelated to their disability and are the
result of a cascade of disparities created by
these barriers to care
HealthMeet® is a catalyst
to create powerful, innovative cascade solutions
that reduce health disparities for people
with intellectual disabilities that ultimately
result in their increased longevity and quality of life
and raise public, health professional,
and community consciousness
of this great need.
Free Health
Achieva/The Arc of Greater
 The Arc of Philadelphia
 The Arc of Lucerne
North Carolina
The Arc of North Carolina
The Arc of Massachusetts
New Jersey
The Arc Gloucester
 The Arc of Atlantic County
San Francisco
The Arc San Francisco
 Funder:
 Centers for Disease Control and
Prevention (CDC)
 Health Data Evaluators:
 Therap Services
 The Boggs Center on
Developmental Disabilities
 University Partners:
 University of Illinois at Chicago
 University of Minnesota –
Research and Training Center
 Dissemination Partners:
 American Association on
Intellectual and Developmental
Disabilities (AAIDD)
 Association of University Centers
on Disabilities (AUCD)
 National Association of County
and City Health Officials
 National Down Syndrome
Congress (NDSC)
Areas covered in Assessments
 Mental health and lifestyle
 General health and body
 Vision
 Hearing
 Oral health
 Foot care
 Respiratory health
Site Activities Include:
 Provide training to health assessment volunteers and people with IDD
 Conduct free health assessments
 Disseminate health care information
 Provide referrals to health services and follow ups
 Follow up with participants to determine impact of assessments and
assist with health care navigation where possible
Data will be collected by volunteer health
assessors that will input results into the Therap
cloud-based database.
Data will be HIPAA compliant and de-identified
before it is sent to Boggs Center for evaluation.
Analyze assessments and longitudinal health
data on people with IDD
3-4 month follow-up survey and caregiver survey
Monthly “health theme” parties
Inclusive with our HealthMatters curriculum
Makes being healthy FUN!
 Healthy foods, Zumba, guest speakers
San Francisco Wellness Wednesdays
 Open clinics weekly for walk-in assessments
State Chapters contract funds out to local
Chapters to do assessments
More localized events to target a broader
NC – house visits in more rural areas
Partner with other local organizations’ events
to provide assessments
Sponsorships for free give-aways
Provide fitness assessments with Eruption
Athletics personal trainers
Trainings for: Health Professionals, Family
Members, Caregivers, Individuals with IDD
Consist of:
 Educational Webinars
 LEND Modules
 Self-Advocate On-line Modules
 HealthMatters Training
45 webinars with over 3,500 participants
and 1,500 additional views from previous
Variety of health promotion topics
Experts in the field
Research-based webinars through APHA
Disability Section
Archived on our website
Dementia: Assessment and Healthcare
Barriers to Physical Activity
Disability and Sexuality
Prevent, Understand and Live with Diabetes
Cloud Technology and Telehealth Capabilities
Seizure Treatment
Healthy Eating
Women’s Health Issues Over a Lifespan
Developed by Association of University
Center on Disability (AUCD)
Online training module for LEND Trainees
and other medical students to insert into
existing curriculum
Case-based real-life scenarios
Case introduction
Response with resources
Case continuation
Title: Understanding Health and Health
Promotion for People with IDD
Purpose: To learn about the adult phase of
the life course continuum of health and
health care for people with IDD
Herman – 57 year old who has IDD and
Terry – 35 year old with CP who needs oral
James – 22 year old with ASD, mild IDD, and
an anxiety disorder, is in homeless housing
and has a severe cough
Grace – 83 year old who has IDD, arthritis,
and asthma
Title: Communication and Disability
Purpose: To learn communication skills for
working with people with IDD in the context of
health care
 Universal design in written and electronic
communication with people with IDD
 Use of person-first language
 Use of technology to enable effective communication
by and with people with IDD
 Communication with people with sensory challenges
(Going live in July 2014)
Developed by the University of Minnesota
Modules are research based and developed
with input from self-advocates
Multi-dimensional – uses pictures, videos,
text, voiceover
Individuals can go through at their own pace
Year 1 - Modules 1 and 2
 Taking Care of Myself
 My Exercise
Year 2 - Modules 3 and 4
 A Healthy Plate
 My Relationships
Evidence based training tailored specifically
for individuals with IDD
Developed by University of Illinois at Chicago
Encompasses a health and fitness component
Allows flexibility and easy to implement
Traditionally a 12 week program
Combine with free health assessments
Field trips – The Y, grocery stores, restaurants
Healthy Living-Healthy Learning Workshops
Bring training into special-education
Healthy e-newsletters
12 organizations
20 trainers trained
Producing 90 training
sessions and 470
participants with IDD in
the programs
27 organizations
59 trainers
Health resources for care givers, family
members and health professionals
Self-advocate resources
 Healthcare checklists, cancer booklets
Monthly health e-newsletters by Achieva
Webinar archives
5k run and walk-a-thon at The Arc of
Radio Show – Cancer and IDD
Conference presentations and exhibits
Partnership with Eruption Athletics
Certified personal trainers
Group & 1 on 1 sessions
tailored for people with IDD
Provide fitness assessments
at Achieva’s HealthMeet
Co-presenting 3 fitness
sessions at NDSC national
convention with The Arc
Volcano Pad
Local Chapters of The Arc individual health
Applications for more grant-funded health
FASD Project
Autism NOW
Funded by the U.S. Dept of Health and
Human Services, Health Resource Services
Administration (HRSA)
Goal: Increase health care providers on the
risks alcohol can have on a fetus
Encourage prevention strategies
Provide educational opportunities
 Webinars, resources, written/video materials, peer
learning communities, CE course and intervention tools
Funded by the Administration on Intellectual
and Developmental Disabilities (AIDD)
Resource and information center that
provides high quality resources and
information in core areas across the lifespan
to individuals with ASD
Dynamic and interactive, highly visible and
effective central point of quality resources
For more information check out our webpage:
Kerry Mauger, Training Coordinator -

The Arc of the United States Growth and Affiliation …