HealthMeet Improving Health of People with Intellectual Disabilities

1. HealthMeet Improving Health of People with Intellectual Disabilities • Kerry Mauger • The Arc of the United States

2. 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.

3. 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

4. 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

5. 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

6. 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

7. CDC Vital Signs • Adults with disabilities are 3 times more likely to have heart disease, stroke, diabetes, or cancer than adults without disabilities. • Nearly halfof 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.

8. 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

9. 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

10. 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.

11. HealthMeet Components

12. 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

13. 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)

14. 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

15. 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

16. 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

17. 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

18. 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

19. Chapter ModelsPennsylvania • Partner with other local organizations’ events to provide assessments • Sponsorships for free give-aways • Provide fitness assessments with Eruption Athletics personal trainers

20. Trainings Trainings for: Health Professionals, Family Members, Caregivers, Individuals with IDD • Consist of: • Educational Webinars • LEND Modules • Self-Advocate On-line Modules • HealthMatters Training

21. 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!

22. 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

23. 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

24. Case Navigation • Case introduction • Question • Response with resources • Case continuation • Question

25. 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/

26. 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

27. 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)

28. 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

29. Selfadvocacyonline.org

30. 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

31. 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

32. 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

33. HealthMatters Totals Year 1 YEAR 2 27 organizations 59 trainers • 12 organizations • 20 trainers trained • Producing 90 training sessions and 470 participants with IDD in the programs

34. HealthMatters

35. 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

36. 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

37. 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

38. The Arc’s Health Initiatives • Local Chapters of The Arc individual health initiatives • Applications for more grant-funded health initiatives • FASD Project • Autism NOW

39. 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

40. 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

41. Thank you! For more information check out our webpage: www.thearc.org/healthmeet Kerry Mauger, Training Coordinator - mauger@thearc.org