Transcript Getting the Memo: It’s Everyone’s Job

NADD
Pre-conference
Integrated Health
and Wellness
Approaches to
Challenging Behavior
in Persons with IDD
San Antonio, Texas
November 12, 2014
HealthMatters Program: Turning Evidence
into Sustainable Practice for People with
Developmental Disabilities
Beth Marks, PhD, RN
Copyright ©2014 HealthMattersProgram.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 HealthMattersProgram.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
•
•
•
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poor health
emotional problems
unhealthy lifestyles
poor quality of life
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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
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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.
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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
Main Causes of
Obesity
Medications that
cause weight gain
 Less physical activity
 Genetics – lower
muscle tone
 Environment – having the opportunity to
eat and move

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Controlling food choices
Choosing activity or exercise
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Handout 2: Genetics, Lifestyle and Obesity
Primary Care is
Reactive
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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
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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 Job
 Lifelong
culture of interdependency
 Expectations
 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 HealthMattersProgram.org
Where People Live Matters
Total Cardiovascular Disease Deaths, 2005/100,000 population
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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
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 number
of people with
disabilities end up
with 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
disabilities
Lenfant C. Clinical Research to Clinical Practice - Lost in Translation? N Engl J Med 2003;349:868-74.
Dispelling Myths…
...…Changing Attitudes
Myths
Facts

People with I/DD
are sick.

People with I/DD see
themselves as healthy.

Chronic conditions
(e.g., obesity,
hypertension,
diabetes) are
disability related.

Chronic conditions are
lifestyle related (e.g.,
sedentary, poor diets,
lack of opportunity).

Lifestyle habits are
impossible to change.

Health promotion
strategies work!
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Determining Health Needs
and Interests
•
•
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Biological factors –
syndrome and genderrelated conditions
Behavioral practices
Access to health care
services and programs
–
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Physical, attitudinal,
programmatic, and
communication/literacy
Socio-economic and
environmental issues
Beyond Personal Health Practices

Sustainable health
promotion programs
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“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 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’tTake-Failure-for-an-answer”
1.Community ignored
2.Community placed
3.Community informed
4.Community as partners
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Aging, Disability, and
Aging with a Disability
Copyright ©2014 HealthMattersProgram.org

Currently 641,000 adults age 60 and older.

Projected increase of
90% to 1.2 million
age 60+ by 2030.

Individuals with I/DD who
have lived 30-50 years with
a disability are experiencing
new health concerns.
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Copyright ©2014 HealthMattersProgram.org
CVD and People with I/DD
Cardiovascular disease (CVD) is one of the most
common causes of death.

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.
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Copyright ©2014 HealthMattersProgram.org
National Core Indicators (NCI)
What is it?

The National Core Indicators (NCI)
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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


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States to manage quality and
Across States for making comparisons and setting
benchmarks.
Today 41 states are participating
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www.nationalcoreindicators.org/states/
Copyright ©2014 HealthMattersProgram.org
NCI Wellness Indicators
NCI State Report: Kentucky
2012-2013
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www.nationalcoreindicators.org/states/
Copyright ©2014 HealthMattersProgram.org
Practical Solutions-Research to Practice
Handout: HealthMatters Program Research to Practice
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HealthMatters Program:
Research Trials
Copyright ©2014 HealthMattersProgram.org
University-Based Program Community-Based
Professional Led
Program Train-the-Trainer
Adults with I/DD
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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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Copyright ©2014 HealthMattersProgram.org
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)
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Partnership with community recreation centers
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Targeted health education programs
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Copyright ©2014 HealthMattersProgram.org
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

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).
Handout: Workshop Brochure
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Copyright ©2014 HealthMattersProgram.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
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Understand attitudes toward
health, exercise & nutrition.
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Identify current behaviors.
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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
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People With Developmental Disabilities , Brooks Publishing., p. xii
Copyright ©2014 HealthMattersProgram.org
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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Copyright ©2014 HealthMattersProgram.org
Real Changes - Matters of Support

Individuals with I/DD
(Intrapersonal)
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Social Support
(Interpersonal)
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Caregiver support
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Peer support
Supportive Environments
(Organization, Community, Policy)
Socio-Ecological Theory
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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…

Supports health & well-being of
people with I/DD and caregivers
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Links employee wellness programs
to organizational outcomes
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absenteeism
turnover
health care costs
workers compensation claims
Healthier workforce linked to higher job
satisfaction and performance.
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Copyright ©2014 HealthMattersProgram.org
Organizational Capacity –
HealthMatters Assessments
Strategically
Balanced Approach
 Culture
 Confidence
 Knowledge
 Resources
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Copyright ©2014 HealthMattersProgram.org
Strategic Planning for Health
Promotion
1.
2.
3.
4.
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.

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
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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 understanding
of 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 12week HealthMessages
Program for peers.
 12 week program

HealthMatters 4Kids: Today Counts
Diabetes Prevention Workshop
 Introduces health promotion and health
advocacy for children and adolescents with I/DD
 Developed by Northpointe Resources in
collaboration with HealthMatters Program at UIC.
Audience
Parents/Caregivers, Educators,
and Healthcare Providers who
support children with I/DD.
Scaling-Up EvidenceBased 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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Copyright ©2014 HealthMattersProgram.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:

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
Beth Marks
312-413-4097
[email protected]
www.HealthMattersProgram.org
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