healthmatters program: turning evidence into sustainable practice for people with developmental...

HealthMatters Program: Turning Evidence into Sustainable Practice

for People with Developmental Disabilities

Beth Marks, PhD, RN

NADD Pre-conference

Integrated Health and Wellness

Approaches to Challenging Behavior in Persons with IDD

San Antonio, TexasNovember 12, 2014

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 HealthMattersProgram.org

Real People

• 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


Did you know that 36% of allAmerican adults are obese?

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Mental Health, Morbidity & Mortality

CVD, acute & chronic pulmonary disease, accidents, suicide, cancer,

diabetes, liver disease, and septicemia Smoking, obesity, & sedentary lifestyles Die on average between 13.5 and

32.2 years earlier than general population Biological pathways & chronic stress with mental illness

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.

1. Medical evaluation of psychiatric patients. Results in a state mental health system.Arch Gen Psychiatry1989; 46:733–740.

2. Wayne Katon, MD, Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine

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Main Causes of Obesity

Medications that cause weight gain

Less physical activity Genetics – lower

muscle tone Environment – having the opportunity to

eat and move Controlling food choices Choosing activity or exercise

Handout 2: Genetics, Lifestyle and Obesity

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Primary Care is Reactive

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

1. Medical evaluation of psychiatric patients. Results in a state mental health system.Arch Gen Psychiatry1989; 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 JobLifelong culture of interdependency

Expectations and the tyranny of none

Power to impacthealth status and determine health practices

Community Engagement Matters

• Developing and implementing evidence-based community-based health promotion programs.

• Sustaining evidence-based programs across community sectors.

• Parity in health status and equity in health care services for people with I/DD.

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Where People Live Matters

American Heart Association and American Stroke Association. (2009). Cardiovascular Diseases in the United States: 2009, retrieved from www.americanheart.org/downloadable/heart/1238516653013CVD_Stats_09_final%20single%20pages%20%282%29.pdf


Total Cardiovascular Disease Deaths, 2005/100,000 population

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Health Promotion• Enable people to take

control over and to improve their health.

• Build capacity within CBOs and communities:

Access to affordable and available health care.

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 numberof people with disabilities end upwith bad health.

Knowledge Lost in Translation

Information gap Slow or no reach to people

receiving services Good questions are asked – but

not reaching academia. Gaps for groups:

women racial/ethnic minorities other high-risk groups in the

US healthcare system – people with disabilitiesLenfant C. Clinical Research to Clinical Practice - Lost in Translation? N Engl J Med

2003;349:868-74.

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Dispelling Myths…

Myths

People with I/DD are sick.

Chronic conditions (e.g., obesity, hypertension, diabetes) are disability related.

Lifestyle habits are impossible to change.

Facts

People with I/DD see themselves as healthy.

Chronic conditions are lifestyle related (e.g., sedentary, poor diets,lack of opportunity).

Health promotion strategies work!

...…Changing Attitudes

Determining Health Needs and Interests

• Biological factors – syndrome and gender-related 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 Sustainable health

promotion programs “Point of View” for Health Behaviors most often

influenced by broader socio-environmental and economic factors

“Where the people are…” Community Coalitions

Social capital – sense of trustand long-term reciprocity

Health and Equity

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1.Community ignored

2.Community placed

3.Community informed

4.Community as partners

Community Partnerships: “Won’t-Take-Failure-for-an-answer”

Aging, Disability, and Aging with a Disability

Currently 641,000 adults age 60 and older.

Projected increase of 90% to 1.2 million age 60+ by 2030.

Individuals with I/DD whohave lived 30-50 years with a disability are experiencing new health concerns.


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Adults living in community settings have the highest CVD risk of all adults with I/DD.

CVD is strongly associated with health behaviors – specifically poor nutrition and lack of physical activity.

CVD and People with I/DD

Cardiovascular disease (CVD) is one of the most

common causes of death.


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National Core Indicators (NCI) What is it?

The National Core Indicators (NCI) 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 States to manage quality and Across States for making comparisons and setting

benchmarks. Today 41 states are participating


www.nationalcoreindicators.org/states/20

NCI Wellness Indicators

www.nationalcoreindicators.org/states/


NCI State Report: Kentucky 2012-2013

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Practical Solutions-Research to Practice


Handout: HealthMatters Program Research to Practice22

HealthMatters Program: Research Trials

University-Based ProgramProfessional Led

Community-Based 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)


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Health and Exercise – What can HealthMatters 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 HealthMatters Program)

* Partnership with community recreation centers

* Targeted health education programs


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HealthMatters Train the Trainer Workshop: Becoming a Certified Instructor

Theoretically-driven Workshop Strategies to teach exercise and

nutrition classes and motivate people to achieve wellness goals

Tools to evaluate changes in health

Handout: Workshop Brochure


CEUs are provided for Advance Practice Nurses, Registered Nurses, Licensed Practical Nurses, Social Workers (LCSW, LSW, LPC, LCPC), Nursing Home Administrators, Speech Language Pathologists, Physical Therapists, Occupational Therapists, Recreational Therapists, and Qualified ID Professionals (QIDP).

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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 Understand attitudes toward

health, exercise & nutrition.

Identify current behaviors.

Develop clear exercise and nutrition goals and stick to them.

Gain skills and knowledge about exercising & eating nutritious foods.

Support each other during class

Marks, Sisirak, & Heller (2010). Health Matters: The Exercise, Nutrition, and Health Education Curriculum for People With Developmental Disabilities , Brooks Publishing., p. xii


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40 Year Gap Great progress with health

promotion and disease prevention in the general population.

Implement health promotion programs on a larger scale for people with disabilities.

Provide sustainable evidence-based health promotion programs as a standard of care.


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Real Changes - Matters of Support

Individuals with I/DD (Intrapersonal)

Social Support (Interpersonal) Caregiver support Peer support

Supportive Environments (Organization, Community, Policy)

Socio-Ecological TheorySource: Golden, S. and Earp, J. (2012), Social ecological approaches to individuals and their contexts:

twenty years of health education and behavior health promotion interventions.


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Organizational Culture…

Supports health & well-being of people with I/DD and caregivers

Links employee wellness programs to organizational outcomes absenteeism turnover health care costs workers compensation claims

Healthier workforce linked to higher job satisfaction and performance.

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Strategically Balanced Approach

Culture

Confidence

Knowledge

Resources

Organizational Capacity – HealthMatters Assessments


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1. Resources: Employees have

resources to promote health among adults with I/DD

2. Culture: Leaders, managers and staff enable and support health promotion practice and values are practiced.

Commitment – Employees believe in and advocate for health promotion

Policy – Vision, mission, and policies align to support health promotion

3. Confidence: Employees are able to

implement health promotion activities4. Knowledge: Employees understand

fundamental principals and strategies of health promotion

Strategic Planning for Health Promotion


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Signs&Symptoms Program: Early Recognition of Health Problems

Increase continuity of care within day/residential CBOs.

Instruct caregivers to observe early signs and symptoms of new or changing health concerns among people with I/DD.

HealthAdvocacy for Providers, Families, and People with I/DD

Increase understandingof health care experiences and needs among adolescents and adults with I/DD

Improve culturally relevant care

Peer to Peer HealthMessages Program

Teach people with I/DD to become Healthy Lifestyle Coaches (HLCs)

Mentors support HLCs to implement a 12-week HealthMessages Program for peers.

12 week program

HealthMatters 4Kids: Today CountsDiabetes Prevention WorkshopIntroduces health promotion and health advocacy for children and adolescents with I/DDDeveloped by Northpointe Resources in collaboration with HealthMatters Program at UIC.

AudienceParents/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

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HealthMatters: Scale-Up Research Project

A 5year 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.

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Study ObjectivesThis study will help us learn how we

can best deliver webinar trainingto give staff in community-based organizations the necessary skills to:

Assist individuals with I/DD to develop their health promotion goal.

Develop and teach a physical activity, nutrition, and health education program for individuals with

I/DD to reach their health promotion goal.

Support individuals with I/DD to make long-term lifestyle changes


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Contact

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Beth [email protected]

healthmatters program: turning evidence into sustainable practice for people with developmental...

Documents

health status

health practices

real people people

mental health providers

health care services

obesity slide

state mental health

promotive health services