Transcript Conceptual Models of Disability: A Short History

Minimizing Differences
through Cross-Agency
Development of Measures
Julie D. Weeks, Ph.D.
National Center for Health Statistics
2012 FCSM Statistical Policy Seminar
Washington, D.C.
December 4-5, 2012
The ACS Disability Measure:
A Case Study
The development of the six-question ACS disability measure
can serve as a model for future collaborations.
• Starting early in the data collection life-cycle;
• Involving a broad spectrum of stakeholders;
• Understanding the disparate needs for the data;
• Using existing models and conceptualizations as guides;
• Joint efforts in testing, including cognitive testing and analyses
using other data sources, to inform development;
• Coordinated implementation and research using resulting data; and
• Promotion to wider federal and data user communities.
Origin of the
ACS Disability Subcommittee
The 2000-2007 ACS disability questions were the same as
those administered as part of the 2000 Census long form.
In 2002, the Interagency Committee for the ACS created a
Disability Subcommittee to ensure that the ACS disability
questions would meet the needs of data users.
Subcommittee charge:
• Review the existing disability question set;
Recommend changes or improvements to provide a more
accurate estimate of the population with disabilities.
•
Resulting recommendations had to be made in time for
a) 2006 Survey Content Test, and b) implementation in the
2008 ACS.
The ACS Disability Subcommittee
• NCHS
• Census
• OMB
• BLS
• OASPE
• AoA
• DoE
• OSERS
• NSF
• VA
• HUD
• NIDDR
• NIMH
• NCD
• SSA
• HIS
• AHRQ
• FCC
• DoJ
Legislative Mandates
for Disability Data
The ACS must provide information on disability in order to satisfy
agencies with statutory or programmatic requirements for disability
data. A review of legislative mandates associated with a wide range
of agencies revealed that data on disability was used by agencies:
• in the distribution of benefits or the provision of opportunities,
• for programmatic needs regarding the overall welfare of the
disabled population.
Agencies and organizations with legislative mandates included:
VA, HUD, SSA, AoA, DOC, DoEd, NIH, CMS, OMH, HIS,
DOJ, DOT, EEC, FCC, NIDRR, NSF, NCD, ACF.
Measurement Objectives
Based on a legislative review, programmatic needs for data and the
constraints of the ACS format, the subcommittee determined that:
•
•
•
“equalization of opportunity” would be the primary measurement
objective for the disability questions
questions would be designed to identify persons who, because of
their limitations in functioning, are at risk for discrimination or
lack appropriate opportunity for participation in all aspects of
social life
one measure of severe disability would be included to identify
those in need of assistance to maintain independence (for purposes
of service provision planning).
Equalization of Opportunities
Adopted as Purpose of Measurement
•Seeks to identify all
•
90
Proportion (%)
those at greater risk
than the general
population for
limitations in activity
or participation
Disability as a
demographic
Percent of persons with HS diploma
60
30
0
Nondisabled
Disabled
Functioning Domains
Question development began by focusing on the functional areas
most commonly associated with limitations in participation.
Based on analyses conducted on large national datasets, including
NHIS, MEPS and SIPP, the functioning domains that were found
to best predict the total population estimate of disability, including
those identified by mental health problems:
•
•
•
•
•
•
Vision
Hearing
Mobility
Cognitive functioning
Self care
Independence getting outside the home
Testing the New ACS Questions
Testing of the new question set was required to understand if the new
questions:
a) would capture the concepts chosen,
b) were more reliable than the old ones, and
c) would perform equally well across administration modes.
• Cognitive Testing: June 2004 – February 2005, 5 rounds of
•
interviews conducted (n=69) at NCHS and Census, 3 data
collection modes (face-to-face, telephone, PAPI self-admin)
Field Testing: 2006 ACS Content Test
62,900 residences, 48 states
split ballot: ½ sample is “control” with ACS production
version and ½ sample is “test” with modified content
initial mail-out December 2005, mail returned January 2006,
non-response follow-up February 2006
•
•
•
Content Test Results
Based on the criteria set out before the test, the revised
questions used in the test interviews performed better than the
control or original questions.
• Reliability in the test version was equal to or better for all
disability items and the summary “with a disability / no
disability” measure.
• Nonresponse in the test version was lower for all disability
items and the summary “with a disability / no disability”
measure.
ACS Disability Questions as a Basic
Standard for Federal Surveys
Surveys conducted by other Federal agencies that have adopted the
rationale and specific domains of the ACS instrument:
•
•
•
•
•
•
•
CPS
SIPP
NHIS
NCVS
FCC
AHS
Education
Increases the standardization of disability questions and data
across surveys.
Provides an opportunity for crosswalk analyses standard disability
items across surveys.
Same Questions:
Similar or Different Numbers
Using the same questions across surveys does not
guaranteed that the same prevalence estimates will be
generated.
Issues that account for different numbers:
• Questions asked at the family level or person level
• Focus of survey - health, employment, crime, or housing
• Mode of data collection
A coordinated approach is needed to understand the
differences and appropriately present data to the public
Prevalence of Disability by Survey: 2009
NHIS
Ages
CPS
ASEC†
(%)
FamilyStyle
(%)
PersonStyle
(%)
ACS
(%)
Vision difficulty
1+
1.7
2.1
2.4
2.2
Hearing difficulty
1+
3.1
3.9
4.1
3.4
Ambulatory difficulty
5+
6.9
6.6
7.2
6.9
Cognitive difficulty
5+
3.5
3.9
4.7
4.8
Self-care difficulty
5+
2.0
1.8
2.2
2.6
Independent living diff
15+
4.0
4.7
5.1
5.4
Any disability
1+
11.6
12.0
13.1
12.1
Disability Item
†NOTE:
CPS data are for population 16 years and over.
Prevalence of Any Disability
by Survey and Age: 2009
NHIS
CPS ASEC†
(%)
Family- Style
(%)
Person-Style
(%)
ACS
(%)
1-4
---
0.3
0.7
0.8
5-14
---
3.7
5.7
5.6
15-34
4.1
5.3
5.7
5.1
35-64
10.0
12.3
14.1
12.7
65-74
22.2
28.6
27.6
26.0
75+
43.3
51.9
53.5
50.9
Age
†NOTE:
CPS data are for population 16 years and over.
Prevalence of Disability
by Survey and Race/Ethnicity: 2009
NHIS
Race/Ethnicity
CPS ASEC† Family- Style
(%)
(%)
Person-Style
(%)
ACS
(%)
Hispanic
7.7
7.4
8.9
8.5
Non-Hispanic white
12.3
12.9
14.4
13.0
Non-Hispanic black
13.3
14.1
13.2
13.9
Non-Hispanic Asian
5.9
6.3
6.7
6.6
Non-Hispanic Other
15.3
15.5
17.1
13.2
†NOTE:
CPS data are for population 16 years and over.
Prevalence of Any Disability by Survey and
Educational Attainment (persons 25+): 2009
25.5
Less than HS
15.1
28.8
30.2
30.6
19.0
20.0
19.3
HS Diploma/G.E.D.
CPS ASEC
NHIS, FS
NHIS, PS
ACS
12.2
15.5
15.9
13.9
Some college/A.A.
6.2
7.3
Bachelor's
7.5
10.1
5.7
7.8
8.3
7.4
Master's +
0%
5%
10%
15%
20%
25%
30%
35%
Prevalence of Any Disability
by Survey and Employment Status*: 2009
30%
24.5
25%
22.1
20.3
20%
16.5
15%
10%
5%
3.4
4.7
5.7
5.0
0%
Employed
Not employed
* CPS and ACS cover persons 16-64; NHIS covers persons 18-64.
CPS ASEC
NHIS, FS
NHIS, PS
ACS
Development of the
ACS Disability Measure:
Pros and Cons
• Reduced data collection flexibility (lengthy process);
• Resource-intensive process (staff, time, testing costs, survey
costs);
• Multiple stakeholders increase costs (logistics);
• Negotiation is difficult;
• Compromises in each step of measure development;
• Comparability (inter- versus intra-agency);
• Post-data collection coordination prolongs the demands and
needs for resources (including data release, production of
methodological and analytic documentation, research, and
outreach).
The New ACS Disability Measures
For sample persons 1 year of age and older:
1. Is this person deaf or does he/she have serious difficulty hearing?
2. Is this person blind or does he/she have serious difficulty seeing?
For sample persons 5 years of age and older:
3. Because of a physical, mental, or emotional condition, does this person have
serious difficulty concentrating, remembering or making decisions?
4. Does this person have serious difficulty walking or climbing stairs?
5. Does this person have difficulty dressing or bathing?
For sample persons 15 years of age and older:
6. Because of a physical, mental, or emotional condition, does this person have
difficulty doing errands alone such as visiting a doctor’s office or shopping?