University Center for
Excellence on Developmental
Disabilities
Oregon State University
April 5th, 2013
Disability: Inclusion in public health
definitions of disparity
Elena Marie Andresen, Ph.D.
Chief, Disability & Health Research Group
Institute on Development & Disability www.ohsuidd.org
Director, Oregon Office on Disability & Health www.oodh.org
Professor, Department of Public Health & Preventive Medicine
email: andresee@ohsu.edu Office phone: 503-494-2275
Today’s Goals & Learning Objectives
• Learning objectives
1. Describe why disability has entered into the thinking of
pubic health research & practice
2. Identify the history & context of public health planning &
core functions for disability
3. Become familiar with disability surveillance used to
provide the core public health function of assessment
4. Describe health & social determinants disparities between
people with disabilities (PWD) & others
5. Apply social & environmental concepts to disability
• At the end of my formal presentation, I ask you to
use your cell phone to provide evaluation feedback
while we do Q&A
A quick “starter” video on inclusion in
social roles
I use this video, among others, to
introduce public health graduate
students to disability.
Public health professionals often do not think as
comprehensively about participation and
environment as do those of us in disability.
Disability discrimination job interview (1 minute). A young
woman with Down’s Syndrome is interviewed.
http://videos.disabled-world.com/video/11/disability-discrimination-job-interview
Why Disability in Public Health?
• Institute of Medicine (2007) US report
– Disability is a common experience
• 40-50 million Americans or “1 in 20”
– Aging & other factors (e.g. obesity epidemic) can
contribute to future increases
– Social & health programs are insufficient to support
persons with disability (PWD)
– We have “better” models to understand & plan for
PWD (the WHO’s social/ environmental model)
– Public Health planning (Healthy People) now
includes disability
Why Disability?
There are substantial disparities in
health, healthcare access, environment,
& social participation of people with
disabilities
We will see data on a few of these
The WHO ICF Model of Disability
(to contrast with the public health model)
Health Condition (ICD)
Body function
& structure
Activities
Environmental
factors e.g., built
environment, policies,
social e.g. caregivers
Participation
Intrinsic
Personal
Factors, e.g.,
age, gender,
race/ethnicity
Contextual
factors
Social-Ecological Model of Public Health
Reproduced from 2020
Secretary’s Advisory Committee
on National Health Promotion &
Disease Prevention Objectives.
Phase I; 2008
http://healthypeople.gov/hp2020/adviso
ry/PhaseI/PhaseI.pdf
Disability Concepts for the Model of Public Health
• Life course
– Life long disability
– Age (or other) transition into &
out of disability
• Environment
– Built, social, policy, think ADA
on steroids!
• Community
– Where we live
– disability culture
• Individual
– Impairment & other intrinsic &
acquired experiences e.g.,
education
• Policy & programs
– Centers for Independent Living
– UCEDDs
U.S. “Healthy People” Process
• Each decade: national plan & goals
– Input from scientists, but the leadership & decisions
are with US agencies (US Public Health Service)
– Strong input from US Preventive Task Force
• Currently (HP 2020)
– Disability had its own focus first in HP 2010
• The HP initiative sets goals for the
nation’s health & to track progress
(www.healthypeople.gov)
Healthy People 2020
• 42 Topic Areas & over 1000 Objectives
Some are “developmental” objectives because
they don’t meet full inclusion criteria, e.g. no
ongoing assessment data source
• Goals are considered for inclusion if they
meet specific criterion, & especially
important is that there be at least two data
collections during the decade (for
evaluation).
HP 2020 Topic Area Disability & Health
20 objectives. Examples are…
• Systems & Policies
– DH–1 Identification of “people with disabilities” in
data systems
– DH–2 Surveillance & health promotion programs
• Barriers to Health Care
– DH–4 Barriers to primary care
• Environment
– DH–8 Barriers to health & wellness programs
– DH–11 Visitable features
Environment Example: Visitability
• DH-11: (Developmental) Increase the % of
newly constructed & retrofitted U.S. homes &
residential buildings that have visitable
features.
– Recall, full HP objectives need at ≥2 data
collection points during the decade. There are no
national surveillance data for visitability.
– In Florida we collected telephone survey data
Visitability: From a movement begun by
Eleanor Smith in the 1980’s
•The ability for all individuals,
regardless of physical ability, to visit
other peoples’ homes www.visitability.org
•Key features
1. At least one entrance without a step & with a
firm, level path to that entrance
2. Doorways wide enough to accommodate a
wheelchair (≥32 inches)
3. At least a half bathroom on the main floor of the
house
Florida Survey 2010: Respondents Reporting
Visitable Features in their Homes (n=750)
Other Results
• 47% reported there were sidewalks on
one or both sides of their street
• Policy implications: 72% supported
building new homes to be visitable
– 73% would be willing to pay an extra $100
– 24% willing to pay $1,000 or more
Public Health Core Functions
Applied to ALL
public health
agencies, levels,
systems
1. Assessment
2. Policy development
3. Assurance
Disability in the Core Functions
• Assessment
• Disability surveillance &
primary epidemiology function disparities, outcomes, etc.
• Policy
Development
• State laws: education
changes for kids with
Developmental Disability?
• Assurance
• Free universal screening
for hearing in kids?
Disability & Public Health Surveillance
& Statistics
Based on Healthy People 2010 CHAPTER 6 *
“Disability is a demographic descriptor rather
than a health outcome. As a descriptor,
disability should be used to monitor
disparities in health outcomes & social
participation.”
I.e., disability  health
*Vision for the Decade Symposium. Atlanta, Dec 4-5, 2000
A few examples of disability epidemiology
& public health activities
Oregon Disability Prevalence BRFSS 2011 (18+)
Disparity example: Food insecurity & disability
among US households
Household prevalence of food insecurity
Household Group:
Working age adult (18-64)
No working age adult with
disability
Working age adult with
“other*” disability
Working age adult not in
labor force (work disability)
2009 & 2010 Current Population Survey
Food Security Supplement
Very low
Low
Total food insecurity
4.6%
7.4%
12.0%
11.8%
13.0%
24.8%
17.3%
16.2%
33.5%
* Other disabilities: hearing, vision, mental, physical, self-care, going outside home;
not limiting work
Coleman-Jensen A, Nord M.. Food insecurity among households with working-age adults with
disabilities, ERR-144, U.S. Department of Agriculture, Economic Research Service, Jan 2013.
Web: http://www.ers.usda.gov/topics/food-nutrition-assistance/food-security-in-the-us.aspx
An example of ongoing surveillance
for “birth defects”
Folic Acid: Prevention Program
• Centers for Disease Control &
Prevention (CDC) took the lead…
• Research showed that folic acid
can prevent spina bifida &
anencephaly
• Worked for fortification of
“enriched” grain products via FDA
Prevalence of spina bifida & anencephaly
Spina bifida
6.0
Anencephaly
Prevalence (per 10,000)
5.0
4.0
3.0
2.0
1.0
Pre-fortification
Optional fort.
Mandatory fortification
0.0
1995
1996
1997
1998
1999
Year & quarter of birth
2000
2001
Folic Acid: Prevention Program
• However,
– Fortification alone is not sufficient:
pre-pregnancy supplements are
needed
• Now educational campaigns
encourage multi-vitamin use
among women of child bearing age
U.S. Disability prevalence (%) & the need
for assistance, by age, 2005
Source: U.S. Census Bureau, Survey of Income & Program Participation, June–Sept 2005.
Data taken from: Brault, M. W. (2008). Does not include children under 5.
Public Health Response:
A focus on the public health of
caregiving, spearheaded by the CDC
(NCBDDD) scientists John Crews &
Ronda Talley
See: Talley & Crews, AJPH 2007.
Example report: DeFries et al., Prev Chronic Dis 2009.
Policy?
• 10-question caregiving module on
developed for the Behavioral Risk Factor
Surveillance System (data driven public health)
– Questions asked across the age span
• Mrs. Rosalynn Carter (former First Lady).
– Her social & policy interests include programs
to train & support family caregivers
– She was the family caregiver for parents & is a
strong, respected voice in the USA
• Her Institute's recent (fall 2010) 12-point
plan includes recommendations on
– Research & development, system design
– Public & tax policy
Data for recommendations: In part from 2009
BRFSS. State caregiving range; 15% to 35%
BRFSS Caregiver Module
2005 - 2012
State conducted module once (24, including District of Columbia)
State conducted module twice (2)
No Activity
Note: The core questionnaire included caregiver questions in 2000 & 2009.
Updated February 17, 2011
The Centers for Disease Control & Prevention (CDC)
Spotlight on Disability & Public Health
With thanks to Don Lollar, formerly with the CDC
Example Program Early Hearing Detection
& Intervention Program (EHDI)
Before Universal Newborn Hearing Screening,
average age identified--2 ½ & 3 years old.
1. Screening all babies for hearing loss before one
month of age: preferably before hospital
discharge
2. Conducting diagnostic audiologic evaluations
before three months of age for all infants who
do not pass the hearing screening
3. Enrolling infants & children with identified
hearing loss in appropriate intervention
services before six months of age.
Percentage of Babies Screened 1993
>90%
75-89%
60-74%
40-59%
25-39%
10-24%
5-9%
< 5%
Percentage of Babies Screened 2001
NCHAM survey, 2001
>90%
75-89%
60-74%
40-59%
25-39%
10-24%
5-9%
< 5%
Issues & conflicts in research for public
Health & disability
Conflict No. 1:“Prevention”
“Eugenics: you want to prevent (me)”
• prevent individuals with disability?
No.
• prevent disability? In terms of– lowering incidence & severity, yes.
– the outcome of impairment, yes.
• Prevent adverse outcomes of
impairments (secondary conditions)?
Yes.
Conflict No. 1:“Prevention”
“Eugenics: you want to prevent (me)”
The extreme example is the NY Times
story of Harriet McBride Johnson &
her objection to & visit with Peter
Singer (Professor, Princeton), who
advocates the potential for
euthanasing babies whose lives he
deems to be cognitively impaired
enough to not be “persons.”
Feb 16th, 2003
Conflict No. 2: Methods
• Epidemiology is quantitative; the
experience of disability is hard to
capture & numbers (sometimes are)
dismissed in the disability
community
• Solutions include combining
methods (staged qualitative
research) & explicit involvement of
PWD (“nothing about us without us”)
Conflict No. 3: Participation of PWD
• Participatory Action Research is
expected in disability research:
traditional epidemiologists expect
distance between scientist & subjects
– Solution: The current public health model
(IOM 2003) supports “community
participatory research”
– Solution: A current medical model is
“patient-centered outcomes research”
Q&A and images of participation
(see website http://fodh.phhp.ufl.edu/training-resources/inclusive-image-library-photo-release/)
Courtesy: Full Radius
Dance & FODH
Courtesy: NCPAD & FODH
Other Resources
• CDC Disability & Health web site. http://www.cdc.gov/ncbddd/disabilityandhealth/index.html
• OHSU Institute on Development & Disability. www.ohsuidd.org
•
Oregon Office on Disability & Health. www.oodh.org
• My favorite disability video: Pepsi, 2008 Super Bowl portrays men
who are deaf looking for “Bob’s House.” http://www.youtube.com/watch?v=ffrq6cUoE5A
• Blog: Harriet McBryde Johnson
http://julsland22.blogspot.com/2010/08/unspeakable-conversation-harriet.html
• Institute of Medicine. The future of disability in America. Washington,
D.C.: National Academies Press, 2007.
• Global:
– Disabled Persons International. http://v1.dpi.org/lang-en/index
– Inclusion International. Inclusive communities = stronger communities. Global
report on Article 19: The right to live & be included in the community. London:
Inclusion International. http://www.inclusion-international.org/wpcontent/uploads/Global-Report-Living-Colour-dr2-2.pdf
– World Health Organization disability model http://www.who.int/classifications/icf/en/
• Textbooks:
– Lollar D, Andresen EM (Eds). Public health perspectives on disability:
epidemiology to ethics & beyond. New York: Springer, 2010.
– Drum CE, Krahn GL, Bersani H (Eds). Disability & public health. Washington
DC: APHA, 2009.