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Prognosis Guarded. How Health Dispari6es Impact the Lives of People with Intellectual Disabili6es
Karen Wolf-‐Branigin, MSW The Arc of the United States
Adriane Griffen, DrPH, MPH, MCHES
Associa6on of University Centers on Disabili6es
Michael Knox, Ph.D., MSW The Boggs Center on Developmental
Disabili6es, UCEDD
2016 ACUD Annual Mee6ng
The HeathMeet® Mission
• To reduce health dispari6es, increase the longevity and quality of life for people with intellectual/developmental disabili6es (ID) by providing: • Free community-‐based health assessments • Recommenda6ons for follow-‐up care
• Training and educa6on for: • Individuals with ID and their families • Healthcare professionals, nursing and medical students • Raising public awareness about health issues that impact people with ID
Health Promo6on: Health MaYers™ • Many people with I/DD do not eat healthy diets or exercise • The University of Illinois-‐Chicago developed the evidence-‐based program HealthMaYers™ • Trained and cer6fied 236 individuals from 99 organiza6ons to implement the program • Delivered 59 HealthMaYers courses (24 sessions) to 664 people who lost a total of 847 lbs. • hYp://healthmaYersprogram.org/
Cape Fear Community College -‐ Wilmington, NC
• Conducted 3 assessment events • 25 students over the 2-‐year period • Completed 71 assessments between May 2013 and May 2015
Drexel University College of Medicine and School of Nursing Philadelphia, PA
• Established a community clinic (once a week for 2.5 hours) that con6nues today • 87 students (74 medical and 13 nursing) over the 3-‐year period • Completed 251 assessments between September 2013 and December 2016
Unan6cipated, Posi6ve Outcomes from health care recipient to health educator
• Quite unique, compared with other academic opportunities • Reassured me of any fears I had towards people with ID • People were very enjoyable and I had a lot of fun • Persuaded me to consider practicing with people with ID
following graduation • Provided me with valuable experiences when I serve people
with ID in the future • I now realize that people with ID are excellent teachers
HealthMeet® Resources • Website hYp://www.thearc.org/healthmeet • Webinars hYp://www.thearc.org/healthmeet/webinars • Resources hYp://www.thearc.org/healthmeet/resources • Online courses • Understanding Health and Health Promo6on for People with ID • hYp://www.iddhealthtraining.org/module-‐1/
• Communica6on Skills • hYp://www.iddhealthtraining.org/module-‐2/
For addi6onal informa6on: Karen Wolf-‐Branigin, The Arc of the United States 202-‐534-‐3711 wolf-‐[email protected]
HealthMeet® AUCD and The Arc
Conduct trainings to improve knowledge on health promo?on and health issues Trainings – development of addi?onal health promo?on module for use in
LEND/UCEDD trainee curriculum Dissemina?on
Webinars – free webinars for all audiences featuring experts speaking on a wide variety of health issues
AUCD HealthMeet Ac.vi.es
Module I: Understanding Health and Health Promo6on for People with Intellectual and other Disabili6es Case 1: Mr. Herman Cruz, a 57 year old man who has diabetes and is obese, visi6ng a new primary care provider Case 2: Ms. Terry Schaeffer, a 35 year old woman, on a visit with a new primary care provider. Case 3: Mr. James Foster, a 22 year old man visi6ng the emergency department because of a severe cough Case 4: Ms. Grace Tester, a 63 year old woman with demen6a and breast cancer. 10
Case 1 Herman Cruz is 57 years old. He is being seen as a pa6ent for the first 6me in the Pine Tree Family Medicine Prac6ce. He is accompanied by his sister, Ms. ScoY, and an aide from the group home where he has been living for one week. Mr. Cruz had always lived with his mother un6l her recent death at age 83. The reason for this visit is that Herman, who has an intellectual disability and diabetes, needs a plan for managing his diabetes in his new home and also needs a refill on his prescrip6on for insulin.
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Ques.on 1.1 Is Mr. Cruz’s situa6on of having lived with elderly parents uncommon among adults with intellectual disabili6es (ID)?
VIEW ANSWER AND RELATED RESOURCES
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Answer 1.1 and Related Resources Following an increase in the number of adults with ID who are living in community-‐based sejngs, the majority of adults with intellectual disabili6es now live in the family home; that percentage is expected to rise. In the US, 665,000 adults with intellectual disabili6es live at home with parents 60 years of age or older. [Braddock D. Aging and developmental disabili6es: demographic and policy issues affec6ng American families. Mental Retarda3on. 1999; 37(2), 155-‐161.] Of note, people with ID living with their families are consistently less likely to receive preven6ve health care than those living in more restric6ve environments. [Bershadsy J, Taub S, Engler J, Moseley CR, Lakin KC, Stancliffe RJ, Larson SL, Ticha R, Bailey C, and Bradley V. Place of residence and preven6ve health care for intellectual and developmental disabili6es service recipients in 20 States. Public Health Reports. 2012; 127(5): 475-‐85.]
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Module II: Communica6on Skills in the context of health and wellness
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Scenario 1: Communica6on skills for working with people with I/DD in the context of health care and wellness encounters. Scenario 2: Universal design in wriYen and electronic communica6on with people with I/DD concerning health and wellness Scenario 3: Language use to demonstrate respect Scenario 4: Communica6on to support self-‐determina6on in health Scenario 5: Use of technology to enable effec6ve communica6on by and with people with I/DD Scenario 6: Communica6on with people with sensory challenges such as hearing loss and visual impairment Scenario 7: Language differences and working with interpreters
Scenario 4 Communica3on to support self-‐determina3on in health
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You are a high school psychologist who counsels adolescent students with I/DD and their families. These students are approaching adulthood and your goal is to support them in developing ajtudes and skills for self-‐determina6on and health self-‐management.
CLICK HERE TO FIND RESOURCES ON SELF-‐DETERMINATION FOR YOU, YOUR STUDENTS AND THEIR FAMILIES.
Resources for Scenario 4 – Communica.on to support self-‐determina.on in health Self-‐determina6on involves knowing what you want, sejng your own goals and making your own decisions. Individuals with I/DD should be supported in taking an ac6ve role in their own healthcare and health-‐related decision-‐making. Professionals who work with individuals with I/DD and their families should encourage and promote these skills and ajtudes beginning in adolescence and throughout the lifespan.
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Thank you
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hWp://www.iddhealthtraining.org/
Thank you!
Rutgers, The State University of New Jersey
The Arc HealthMeet Assessment Results:
March, 2013 – July, 2015
Goals
• Overview of HealthMeet assessments
• Characteristics of assessment participants
• Highlight key findings from assessment results
• Compare key HealthMeet results with US general population
• Highlight findings from Follow-up Assessments
HealthMeet Assessments Overview
• 1,760 Initial Assessments • 707 Follow-Up Assessments • 26% of participants had not participated in
activities from The Arc activities before (Years 1&2)
• 82% had someone accompany them
Assessment Modules
• General characteristics • Body Composition, Vital Signs &
Respiratory Health • Vision • Hearing • Oral health • Foot/mobility health
n = 1,579
5%
15%
27%
53%
14-21 22-26 27-39 40+
Age Groups
HealthMeet Participants - Gender
n = 1,630
52% 48%
Male Female
Disabilities Reported
n = 1,760
%
8.9 8.5 10.5
0.2 0.2 1.9
69.3
4.3
0
20
40
60
80
Au.sm Cerebral Palsy Down Syndrome
Fetal Alcohol Syndrome
Fragile X Syndrome
Trauma.c Brain Injury
Intellectual Disability
Other
Race
White / Caucasian 75.9%
Black / African American
14.7%
Asian /Pacific Islander
5.1%
Other 4.3%
Where do you live right now?
n = 1,537
%
85.5 81.8
65.0
28.8
4.8 2.6
10.9
17.8
8.4
15.2
23.7
52.8
1.2 0.4 0.5 0.6 0
10
20
30
40
50
60
70
80
90
100
14-‐21 22-‐26 27-‐39 40+
With parents or your family In your own home or apartment In a group home At an ins.tu.on or facility
Significance: p < .001
Health Insurance
n = 1,169
%
52.5
40.9
44.3
30.3
48.5 48.7
33.9
54.5
25.0 23.9
15.5
9.6
5.0 2.5 2.2 0.9
0
10
20
30
40
50
60
14-‐21 22-‐26 27-‐39 40+
Medicaid Medicare Private Insurance Not Covered
Significance: p < .001
Self-Rated Health
= 1,360
%
32.9 30.6 28.7
20.0
57.9 58.7 54.4
59.8
9.2 10.2 15.2 16.8
0.0 0.5 1.7 3.4
0
10
20
30
40
50
60
70
14-‐21 22-‐26 27-‐39 40+
Very Good Good Fair Poor
Significance: p < .001
Individuals accompanying participants
Relationship to person
81.7
18.3
77.1
22.9
58.9
35.5
1.1 4.5
0
10
20
30
40
50
60
70
80
90
Yes No Yes No Family member
Staff person Friend Other
Caregiver Characteristics
Primary Caretaker Contact Person Identified
%
BMI comparison with US population
34%
29%
6%
28%
34%
12%
25%
34%
17%
0%
10%
20%
30%
40%
50%
60%
Overweight (25.0-29.9) Obese (30-39.9) Extremely Obese (40+)
US Adults HealthMeet - All Initial HealthMeet -Follow-up
(Ogden, Carroll, Fryar, & Flegal, 2015)
BMI comparison with US population by gender
34% 38% 40%
53%
45%
56%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Male Female
US Adults HealthMeet - All Initial HealthMeet -Follow-up
(Ogden, Carroll, Fryar, & Flegal, 2015)
Obesity (BMI 30+)
Diabetes comparison with US
14% 13% 14%
0%
10%
20%
30%
40%
50%
60%
Diabetes
US Adults HealthMeet - All Initial HealthMeet -Follow-up
(Menke, Casagrande, Geiss, & Cowie, 2015)
Comparison with US adults - Missing Teeth
10%
25%
31%
0%
10%
20%
30%
40%
50%
60%
Missing Teeth
US Adults HealthMeet - All Initial HealthMeet -Follow-up
(National Institute of Dental and Craniofacial Research (2000))
Comparison with US older adults - Falls
5%
17%
13%
0%
10%
20%
30%
40%
50%
60%
Fallen in last year
US Adults HealthMeet - All Initial HealthMeet -Follow-up
(Schiller, Kramarow, & Dey, 2007)
Follow-up Assessments: Key Findings
• 84% with health problems at initial assessment reported going to doctor about them
• 79% reported feeling they had more information on health issues and healthier lifestyles
• 76% reported using information learned at first assessment to make healthier choices
Using the information Feeling they had more information
Going to doctor about their problems
Follow-up Assessment by Gender
88.0
78.0 83.0
75.0 79.0
71.0
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
80.0
90.0
100.0
Female Male Female Male Female Male
Significance: p < .01 Significance: p < .05 Significance: p < .05
Summary • Key areas of concern from assessments
– Obesity, Extreme Obesity – Oral health – Falls
• Encouraging findings from Follow-ups – 8 of 10 participants reported:
• Feeling they had more health information after initial assessment
• Using the information they gained • Going to doctor if a problem identified
