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NADD Pre-conference Integrated Health and Wellness Approaches to Challenging Behavior in Persons with IDD San Antonio, Texas November 12, 2014 Health. Matters Program: Turning Evidence into Sustainable Practice for People with Developmental Disabilities Beth Marks, Ph. D, RN
Copyright © 2014 Health. Matters. Program. org Getting the Memo § Real People – Health promotion for people with intellectual and developmental disabilities (I/DD) and psychiatric disabilities § Practical Solutions – Evidence based practice for community services § Real Changes – Support for long-term lifestyle changes
Copyright © 2014 Health. Matters. Program. org Real People Did you know that 36% of all American adults are obese? • People with I/DD are more overweight and obese compared to the general population. • Paid caregivers experience stress and burnout • • poor health emotional problems unhealthy lifestyles poor quality of life 3
Mental Health, Morbidity & Mortality p CVD, acute & chronic pulmonary disease, accidents, suicide, cancer, diabetes, liver disease, and septicemia p Smoking, obesity, & sedentary lifestyles p Die on average between 13. 5 and 32. 2 years earlier than general population p Biological pathways & chronic stress with mental illness n n increased pituitary activity, cortisone levels, & proinflammatory factors strokes and heart attacks, and abnormalities of the autonomic nervous system that might lead to more heart disease and sudden death issues. 4 1. Medical evaluation of psychiatric patients. Results in a state mental health system. Arch Gen Psychiatry 1989; 46: 733– 740. 2. Wayne Katon, MD, Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine
Main Causes of Obesity Medications that cause weight gain p Less physical activity p Genetics – lower muscle tone p Environment – having the opportunity to eat and move p n n Controlling food choices Choosing activity or exercise 5 Handout 2: Genetics, Lifestyle and Obesity
Primary Care is Reactive p p p Difficult for people who are reluctant, or unable, to seek help Short consultation times Physical exams are difficult for people who may be vague or suspicious Emphasis often on psychological and social issues if mental health providers are present Preventive and promotive health services often absent 6 1. Medical evaluation of psychiatric patients. Results in a state mental health system. Arch Gen Psychiatry 1989; 46: 733– 740. 2. Wayne Katon, MD, Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine
It’s Everyone’s Job p Lifelong culture of interdependency p Expectations p Power and the tyranny of none to impact health status and determine health practices
Community Engagement Matters • Developing and implementing evidencebased community-based health promotion programs. • Sustaining evidencebased programs across community sectors. • Parity in health status and equity in health care services for people with I/DD.
Copyright © 2014 Health. Matters. Program. org Where People Live Matters Total Cardiovascular Disease Deaths, 2005/100, 000 population 9 9 American Heart Association and American Stroke Association. (2009). Cardiovascular Diseases in the United States: 2009, retrieved from www. americanheart. org/downloadable/heart/1238516653013 CVD_Stats_09_final%20 single%20 pages%20%282%29. pdf
Health Promotion • Enable people to take control over and to improve their health. • Build capacity within CBOs and communities: n Access to affordable and available health care. n Acceptable culturally relevant and satisfactory health care.
Disability and Health Status While a large proportion of persons who are in bad health end up with a disability, a large number of people with disabilities end up with bad health.
Knowledge Lost in Translation p Information gap n Slow or no reach to people receiving services n Good questions are asked – but not reaching academia. p Gaps for groups: n women n racial/ethnic minorities n other high-risk groups in the US healthcare system – people with disabilities Lenfant C. Clinical Research to Clinical Practice - Lost in Translation? N Engl J Med 2003; 349: 868 -74.
Dispelling Myths… . . . …Changing Attitudes Facts Myths p People with I/DD are sick. p People with I/DD see themselves as healthy. p Chronic conditions (e. g. , obesity, hypertension, diabetes) are disability related. p Chronic conditions are lifestyle related (e. g. , sedentary, poor diets, lack of opportunity). p Lifestyle habits are impossible to change. p Health promotion strategies work! 13
Determining Health Needs and Interests • • • Biological factors – syndrome and genderrelated conditions Behavioral practices Access to health care services and programs – • Physical, attitudinal, programmatic, and communication/literacy Socio-economic and environmental issues
Beyond Personal Health Practices p Sustainable health promotion programs n n n p “Point of View” for Health Behaviors most often influenced by broader socio-environmental and economic factors “Where the people are…” Community Coalitions n Social capital – sense of trust and long-term reciprocity
Health and Equity Translating Evidence-Based Health Promotion Research to Practice There has been a lack of bi-directionality (sort of) because your research is yours (rightly so) and our comments may be helpful to you or not, but may not have significant influence on your process in the end. ~ Leslie Hoelzel, ARCA
Community Partnerships: “Won’t. Take-Failure-for-an-answer” 1. Community ignored 2. Community placed 3. Community informed 4. Community as partners 17
Copyright © 2014 Health. Matters. Program. org Aging, Disability, and Aging with a Disability p Currently 641, 000 adults age 60 and older. p Projected increase of 90% to 1. 2 million age 60+ by 2030. p Individuals with I/DD who have lived 30 -50 years with a disability are experiencing new health concerns. 18
Copyright © 2014 Health. Matters. Program. org CVD and People with I/DD Cardiovascular disease (CVD) is one of the most common causes of death. n Adults living in community settings have the highest CVD risk of all adults with I/DD. n CVD is strongly associated with health behaviors – specifically poor nutrition and lack of physical activity. 19
Copyright © 2014 Health. Matters. Program. org National Core Indicators (NCI) What is it? p The National Core Indicators (NCI) n n p Started in 1997 Collaborative effort between the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). The goal: Standard set of performance measures § § p States to manage quality and Across States for making comparisons and setting benchmarks. Today 41 states are participating 20 www. nationalcoreindicators. org/states/
Copyright © 2014 Health. Matters. Program. org NCI Wellness Indicators NCI State Report: Kentucky 2012 -2013 21 www. nationalcoreindicators. org/states/
Copyright © 2014 Health. Matters. Program. org Practical Solutions-Research to Practice Handout: Health. Matters Program Research to Practice 22
Health. Matters Program: Research Trials Copyright © 2014 Health. Matters. Program. org University-Based Program Community-Based Professional Led Program Train-the-Trainer Adults with I/DD exercise attitudes exercise self-efficacy exercise outcome expectations life satisfaction cardiovascular fitness, strength and endurance cognitive–emotional barriers Heller, et al. , (2004); Rimmer, et al. , (2004) Adults with I/DD perceived health behaviors exercise self-efficacy nutrition/activity knowledge cholesterol & glucose fitness (flexibility) exercise & nutrition socio-environmental supports Marks, Sisirak, Chang (2013) 23
Copyright © 2014 Health. Matters. Program. org Health and Exercise – What can Health. Matters Do? Example Goal Increase the overall percentage of recipients who engage in moderate physical activity for 30 minutes a day at least three times per week by at least 5%. Strategies to Meet Goal * Structured activities within day services (12 -week Health. Matters Program) * Partnership with community recreation centers * Targeted health education programs 24
Copyright © 2014 Health. Matters. Program. org Health. Matters Train the Trainer Workshop: Becoming a Certified Instructor Theoretically-driven Workshop p Strategies to teach exercise and nutrition classes and motivate people to achieve wellness goals p Tools to evaluate changes in health p CEUs are provided for Advance Practice Nurses, Registered Nurses, Licensed Practical Nurses, Social Workers (LCSW, LPC, LCPC), Nursing Home Administrators, Speech Language Pathologists, Physical Therapists, Occupational Therapists, Recreational Therapists, and Qualified ID Professionals (QIDP). Handout: Workshop Brochure 25
Copyright © 2014 Health. Matters. Program. org Health Matters: The Exercise and Nutrition Health Education Curriculum Evidenced-Based Curriculum for adults with I/DD 36 interactive modules with 23 additional lifelong learning modules n n n Understand attitudes toward health, exercise & nutrition. n Identify current behaviors. n Develop clear exercise and nutrition goals and stick to them. n Gain skills and knowledge about exercising & eating nutritious foods. n Support each other during class Marks, Sisirak, & Heller (2010). Health Matters: The Exercise, Nutrition, and Health Education Curriculum for 26 People With Developmental Disabilities , Brooks Publishing. , p. xii
Copyright © 2014 Health. Matters. Program. org 40 Year Gap p Great progress with health promotion and disease prevention in the general population. p Implement health promotion programs on a larger scale for people with disabilities. p Provide sustainable evidence-based health promotion programs as a standard of care. 27
Copyright © 2014 Health. Matters. Program. org Real Changes - Matters of Support n Individuals with I/DD (Intrapersonal) n Social Support (Interpersonal) p p n Caregiver support Peer support Supportive Environments (Organization, Community, Policy) Socio-Ecological Theory 28 Source: Golden, S. and Earp, J. (2012), Social ecological approaches to individuals and their contexts: twenty years of health education and behavior health promotion interventions.
Organizational Culture… p Supports health & well-being of people with I/DD and caregivers p Links employee wellness programs to organizational outcomes n n p absenteeism turnover health care costs workers compensation claims Healthier workforce linked to higher job satisfaction and performance. 29
Copyright © 2014 Health. Matters. Program. org Organizational Capacity – Health. Matters Assessments Strategically Balanced Approach ü Culture ü Confidence ü Knowledge ü Resources 30
Copyright © 2014 Health. Matters. Program. org Strategic Planning for Health Promotion 1. 2. Resources: Employees have resources to promote health among adults with I/DD Culture: Leaders, managers and staff enable and support health promotion practice and values are practiced. n n 3. 4. Commitment – Employees believe in and Policy – Vision, mission, and policies align advocate for health promotion to support health promotion Confidence: Employees are able to implement health promotion activities Knowledge: Employees understand fundamental principals and strategies of health promotion 31
Signs&Symptoms Program: Early Recognition of Health Problems p Increase continuity of care within day/residential CBOs. p Instruct caregivers to observe early signs and symptoms of new or changing health concerns among people with I/DD.
Health. Advocacy for Providers, Families, and People with I/DD p Increase understanding of health care experiences and needs among adolescents and adults with I/DD p Improve culturally relevant care
Peer to Peer Health. Messages Program Teach people with I/DD to become Healthy Lifestyle Coaches (HLCs) p Mentors support HLCs to implement a 12 week Health. Messages Program for peers. p 12 week program p
Health. Matters 4 Kids: Today Counts Diabetes Prevention Workshop p Introduces health promotion and health advocacy for children and adolescents with I/DD p Developed by Northpointe Resources in collaboration with Health. Matters Program at UIC. Audience Parents/Caregivers, Educators, and Healthcare Providers who support children with I/DD.
Scaling-Up Evidence. Based Programs • Facilitate buy-in, fiscal accountability, and policy support from stakeholders • Understand facilitators and barriers for scale-up • Achieve widespread translation in CBOs for reach, effectiveness, adoption, implementation and maintenance of program 36
Health. Matters: Scale-Up Research Project p p A 5 year research study evaluating the usefulness of an interactive webinar (Health Matters Program: Train the Trainer online course). Aimed at staff working in community-based organizations providing services to people I/DD. 37
Copyright © 2014 Health. Matters. Program. org Study Objectives This study will help us learn how we can best deliver webinar training to give staff in community-based organizations the necessary skills to: n Assist individuals with I/DD to develop their health promotion goal. n Develop and teach a physical activity, nutrition, and health education program for individuals with I/DD to reach their health promotion goal. n Support individuals with I/DD to make long-term lifestyle changes 38
Contact Beth Marks 312 -413 -4097 bmarks [email protected] edu www. Health. Matters. Program. org 39