Transcript The Arc of the United States Growth and Affiliation Thomas

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.
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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
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Ann Cameron Williams
Principal Investigator
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Karen Wolf-Branigin
Project Manager
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Kerry Mauger
Training Coordinator
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Casey Nitsch
Grant Proposal Manager
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Jenny Sladen
Senior Project Associate
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Robert Lutz
Research Assistant
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People with IDD tend to be less healthy than the general
population
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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
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Individuals with IDD are…
 2 to 7 times more likely to have dental
complications
 4 times more likely to experience a mental health
condition
 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
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Adults with disabilities are
3 times more likely to have
heart disease, stroke, diabetes,
or cancer than adults without
disabilities.
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Nearly half of all adults with
disabilities get no aerobic
physical activity.
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Adults with disabilities are 82%
more likely to be physically
active if recommended by their
doctor.
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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.
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People with IDD disproportionately experience barriers to receiving
quality healthcare
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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
Assessments
Resource
Center
HealthMeet
Trainings
Data
Analysis
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Pennsylvania
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Achieva/The Arc of Greater
Pittsburgh
 The Arc of Philadelphia
 The Arc of Lucerne
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North Carolina
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The Arc of North Carolina
Massachusetts
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The Arc of Massachusetts
New Jersey
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The Arc Gloucester
 The Arc of Atlantic County
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San Francisco
Region
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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
(UIC)
 University of Minnesota –
Research and Training Center
(UMN)
 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
(NACCHO)
 National Down Syndrome
Congress (NDSC)
Areas covered in Assessments
include:
 Mental health and lifestyle
factors
 General health and body
composition
 Vision
 Hearing
 Oral health
 Foot care
 Respiratory health
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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
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Data will be collected by volunteer health
assessors that will input results into the Therap
cloud-based database.
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Data will be HIPAA compliant and de-identified
before it is sent to Boggs Center for evaluation.
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Analyze assessments and longitudinal health
data on people with IDD
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3-4 month follow-up survey and caregiver survey
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Monthly “health theme” parties
Inclusive with our HealthMatters curriculum
Makes being healthy FUN!
 Healthy foods, Zumba, guest speakers
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San Francisco Wellness Wednesdays
 Open clinics weekly for walk-in assessments
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State Chapters contract funds out to local
Chapters to do assessments
More localized events to target a broader
audience
NC – house visits in more rural areas
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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
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Consist of:
 Educational Webinars
 LEND Modules
 Self-Advocate On-line Modules
 HealthMatters Training
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45 webinars with over 3,500 participants
and 1,500 additional views from previous
recordings
Variety of health promotion topics
Experts in the field
Research-based webinars through APHA
Disability Section
Archived on our website
FREE!
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Dementia: Assessment and Healthcare
Practices
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
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Developed by Association of University
Center on Disability (AUCD)
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Online training module for LEND Trainees
and other medical students to insert into
existing curriculum
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Case-based real-life scenarios
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Case introduction
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Question
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Response with resources
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Case continuation
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Question
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Title: Understanding Health and Health
Promotion for People with IDD
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Purpose: To learn about the adult phase of
the life course continuum of health and
health care for people with IDD
http://www.iddhealthtraining.org/
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Herman – 57 year old who has IDD and
diabetes
Terry – 35 year old with CP who needs oral
contraceptives
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
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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)
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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
www.selfadvocacyonline.org
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Year 1 - Modules 1 and 2
 Taking Care of Myself
 My Exercise
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Year 2 - Modules 3 and 4
 A Healthy Plate
 My Relationships
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Evidence based training tailored specifically
for individuals with IDD
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Developed by University of Illinois at Chicago
(UIC)
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Encompasses a health and fitness component
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Allows flexibility and easy to implement
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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
classrooms
Healthy e-newsletters
YEAR 1
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12 organizations
20 trainers trained
Producing 90 training
sessions and 470
participants with IDD in
the programs
YEAR 2
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27 organizations
59 trainers
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Blogs
Health resources for care givers, family
members and health professionals
Self-advocate resources
 Healthcare checklists, cancer booklets
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Monthly health e-newsletters by Achieva
Webinar archives
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5k run and walk-a-thon at The Arc of
Gloucester
Radio Show – Cancer and IDD
Conference presentations and exhibits
Partnership with Eruption Athletics
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Certified personal trainers
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Group & 1 on 1 sessions
tailored for people with IDD
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Provide fitness assessments
at Achieva’s HealthMeet
events
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Co-presenting 3 fitness
sessions at NDSC national
convention with The Arc
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Volcano Pad
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Local Chapters of The Arc individual health
initiatives
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Applications for more grant-funded health
initiatives
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FASD Project
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Autism NOW
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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
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Funded by the Administration on Intellectual
and Developmental Disabilities (AIDD)
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Resource and information center that
provides high quality resources and
information in core areas across the lifespan
to individuals with ASD
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Dynamic and interactive, highly visible and
effective central point of quality resources
For more information check out our webpage:
www.thearc.org/healthmeet
Kerry Mauger, Training Coordinator - [email protected]