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]