HealthMeet Improving Health of People with Intellectual Disabilities
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Transcript of HealthMeet Improving Health of People with Intellectual Disabilities
HealthMeet Improving Health of People with Intellectual
Disabilities
Kerry MaugerThe Arc of the United States
The Arc’s Mission Statement
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.
The Arc of the United States
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
The HealthMeet Project 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
Why is HealthMeet Important?
People with IDD tend to be less healthy than the general population
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
Statistics
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
CDC Vital Signs Adults with disabilities are
3 times more likely to have heart disease, stroke, diabetes, or cancer than adults without disabilities.
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 doctor.
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.
Why is HealthMeet Important?
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
Vision
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.
HealthMeet Components
HealthMeet
5 Health Assessment Sites
Pennsylvania Achieva/The Arc of Greater
Pittsburgh The Arc of Philadelphia The Arc of Lucerne
North Carolina The Arc of North Carolina
Massachusetts The Arc of Massachusetts
New Jersey The Arc Gloucester The Arc of Atlantic County
San Francisco Region The Arc San Francisco
HealthMeet Partners
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)
Health Assessments
Areas covered in Assessments include: Mental health and
lifestyle factors General health and body
composition Vision Hearing Oral health Foot care Respiratory health
HealthMeet Site Activities
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 Collection and Evaluation
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
Chapter ModelsNew Jersey and San Francisco
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
Chapter Models NC and Massachusetts
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
Chapter ModelsPennsylvania
Partner with other local organizations’ events to provide assessments
Sponsorships for free give-aways Provide fitness assessments with
Eruption Athletics personal trainers
Trainings
Trainings for: Health Professionals, Family Members, Caregivers, Individuals with IDD
Consist of:
Educational Webinars LEND Modules Self-Advocate On-line Modules HealthMatters Training
Educational Webinars
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!
Webinar Topics
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
AUCD LEND Modules
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 Navigation
Case introduction
Question
Response with resources
Case continuation
Question
LEND Module 1
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
http://www.iddhealthtraining.org/
Module 1 – 4 case studies
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
LEND Module 2 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)
Self-Advocacy Online
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
Selfadvocacyonline.org
4 Self-Advocate Modules
Year 1 - Modules 1 and 2 Taking Care of Myself My Exercise
Year 2 - Modules 3 and 4 A Healthy Plate My Relationships
HealthMatters
Evidence based training tailored specifically for individuals with IDD
Developed by University of Illinois at Chicago (UIC)
Encompasses a health and fitness component
Allows flexibility and easy to implement
Implementation Methods
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
HealthMatters Totals YEAR 1
12 organizations 20 trainers trained Producing 90
training sessions and 470 participants with IDD in the programs
YEAR 2 27 organizations 59 trainers
HealthMatters
Health Resources
Blogs 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
Other HealthMeet Activities
5k run and walk-a-thon at The Arc of Gloucester
Radio Show – Cancer and IDD Conference presentations and
exhibits Partnership with Eruption Athletics
Eruption Athletics
Certified personal trainers Group & 1 on 1 sessions
tailored for people with IDD
Provide fitness assessments at Achieva’s HealthMeet events
Co-presenting 3 fitness sessions at NDSC national convention with The Arc
Volcano Pad
The Arc’s Health Initiatives
Local Chapters of The Arc individual health initiatives
Applications for more grant-funded health initiatives
FASD Project
Autism NOW
FASD Project
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
Autism NOW 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
Thank you!
For more information check out our webpage: www.thearc.org/healthmeet
Kerry Mauger, Training Coordinator - [email protected]