Race/Ethnicity and the
Use of Preventive Care
Among Adults with
Intellectual and
Developmental
Disabilities
WHAT IS
NATIONAL CORE INDICATORS (NCI)?
• Multi-state collaboration of state DD agencies
• Measures performance of public systems for people
with intellectual and developmental disabilities
• Assesses performance in several areas, including:
employment, community inclusion, choice, rights, and
health and safety
• Launched in 1997 in 13 participating states
• Supported by participating states
• NASDDDS – HSRI Collaboration
National Core Indicators (NCI)
WHAT IS
NATIONAL CORE INDICATORS (NCI)?
• Currently 35 states, the District of Columbia and 25 sub-state
regions (including all CA Regional Centers)
NCI State Participation 2012-13
National Core Indicators (NCI)
WHAT IS NCI?
• Adult Consumer Survey
• Family Survey
 Adult Family Survey (person lives at home; 18 and older)
 Family Guardian Survey (person lives out-of-home; 18 and older)
 Children Family Survey (child lives at home; under 18 years old)
• Provider Survey
 Staff Stability
• System Data
 Mortality
 Incidents
National Core Indicators (NCI)
WHAT IS NCI?
Adult Consumer Survey
• Standardized, face-to-face interview with a sample
of individuals receiving services
 Background Information
 Section I (no proxies allowed)
 Section II (proxies allowed)
• No pre-screening procedures
• Conducted with adults only (18 and over) receiving
at least one service in addition to case management
• Section I and Section II together take 50 minutes (on
average)
National Core Indicators (NCI)
Methods, Measures and Sample:
Data Source
• Adult Consumer Survey (ACS), 2011-2012 data collection cycle
• Background Information section: demographics, residence,
health, and employment information. Generally collected from
records by case managers.
• 19 states, one regional council
• Total N: 11,224 individuals
National Core Indicators (NCI)
Methods, Measures and Sample:
Race/Ethnicity
• Source: two items from Background Section
 Ethnicity (Hispanic, or non-Hispanic)
 Race (American Indian or Alaska Native, Asian, Black or
African, American, Pacific Islander, White, or Other race
not listed)
• Items combined to create: Race/Ethnicity
 White, Non-Hispanic
 African American, Non-Hispanic
 Hispanic
• Other race/ethnic categories too small for analysis
National Core Indicators (NCI)
Methods, Measures and Sample:
Preventive Care
•
•
•
•
Person has a primary care doctor:
 No
 Yes
Last complete annual physical exam (routine):
 In the past year
 One year ago or more
Last dentist visit:
 In the past year
 One year ago or more
Last eye exam/vision screening
 In the past year
 One year ago or more
National Core Indicators (NCI)
Methods, Measures and Sample:
Preventive Care
•
•
•
•
Last hearing test:
 Within the past 5 years
 5 years ago or more (or never)
Flu vaccination in the past 12 months:
 Yes
 No
Ever had a vaccination for pneumonia:
 Yes
 No
“Don’t know” responses were excluded from these analysis – i.e. excluded from
both denominator and numerator
National Core Indicators (NCI)
FINDINGS
National Core Indicators (NCI)
Race/Ethnicity of Sample
Race/Ethnicity
Frequency
Percent of total
African American, NonHispanic
Hispanic
2,251
20.1%
457
4.1%
White, Non-Hispanic
8,516
75.9%
11,224
100.0%
Total
20.1%
4.1%
75.9%
National Core Indicators (NCI)
African American,
Non-Hispanic
Hispanic
White, NonHispanic
Preventive Care:
Primary Care Doctor (p < .001)
100%
95%
96.8%
96.0%
African American, NonHispanic
Hispanic
91.8%
90%
85%
80%
75%
70%
65%
60%
55%
50%
White, Non-Hispanic
National Core Indicators (NCI)
Preventive Care:
Physical Exam in Past Year (p < .001)
100%
95%
Dentist Visit in Past Year (p < .001)
100%
95%
92.1%
88.9%
90%
90%
85.2%
85%
85%
80%
80%
75%
75%
70%
70%
65%
65%
60%
60%
55%
55%
50%
50%
White, NonHispanic
African
American,
Non-Hispanic
National Core Indicators (NCI)
Hispanic
84.8%
79.0%
74.7%
White, NonHispanic
African
American,
Non-Hispanic
Hispanic
Preventive Care:
Eye Exam/Vision Screening in Past
Year (p < .05)
Hearing Test in Past Five Years
( p < .01)
90%
90%
85%
85%
80%
80%
75%
75%
70.9%
70%
69.3%
70%
66.5%
65%
61.5%
65%
62.8%
60%
60%
55.5%
55%
55%
50%
50%
White, NonHispanic
African
American,
Non-Hispanic
National Core Indicators (NCI)
Hispanic
White, NonHispanic
African
American,
Non-Hispanic
Hispanic
Preventive Care:
Flu vaccine in past year (p < .001)
Ever had pneumonia vaccine (p < .001)
100%
100%
90%
90%
80%
80.5%
70.6%
72.6%
80%
70%
70%
60%
60%
50%
50%
40%
40%
30%
30%
20%
20%
10%
10%
0%
44.9%
34.5%
32.4%
0%
White, Non-Hispanic African American,
Non-Hispanic
National Core Indicators (NCI)
Hispanic
White, Non-Hispanic African American,
Non-Hispanic
Hispanic
Preventive Care:
Simple binary logistic regressions
(odds ratios)
White, Non-Hispanic
African American, Non-Hispanic
Hispanic
* p<.05, ** p<.01, ***p<.001
National Core Indicators (NCI)
Primary
care doc
Phys
exam
Dental
exam
Vision Hear test
screen
Flu vacc
Pneum
vacc
ref
ref
ref
ref
ref
ref
ref
2.66***
0.69***
0.53***
1.06
0.81**
0.58***
0.65***
2.13**
0.50***
0.67**
0.78*
0.92
0.64**
0.59***
BUT:
• Differences may be due to other demographic characteristics.
• The following demographic variables were tested and found to be
significantly different among the three racial/ethnic categories:











State
Age
Gender
Individual’s primary language
Individual’s primary means of expression
Level of intellectual disability
Mobility
Other diagnoses (in addition to ID/DD)
Poor health status
Support needed for behavioral issues
Residence type
National Core Indicators (NCI)
Demographic Differences:
Average Age (p < .001)
45
Gender (p < .01)
44.8
70%
61.9%
44
60%
43
50%
42
40.9
41
58.5%
Female
55.2%
44.8%
41.5%
38.1%
40%
40
30%
39
37.7
38
20%
37
10%
36
35
White, Non-Hispanic
African American,
Non-Hispanic
National Core Indicators (NCI)
Hispanic
0%
White, NonHispanic
African
American, NonHispanic
Male
Hispanic
Demographic Differences:
Primary language (p < .001)
100%
99.2%
Primary means of expression (p<.01)
99.4%
English
100%
Non-spoken
Spoken
other
90%
90%
79.0%
80%
80%
70%
70%
60%
60%
50%
50%
40%
40%
30%
30%
22.4%
21.0%
20%
20%
10%
10%
0.8%
77.6%
74.3%
25.7%
73.3%
26.7%
0.6%
0%
0%
White, NonHispanic
African American,
Non-Hispanic
National Core Indicators (NCI)
Hispanic
White, Non-Hispanic African American,
Non-Hispanic
Hispanic
Demographic Differences:
Level of Intellectual Disability (p < .01)
50%
White, Non-Hispanic
45%
African American, Non-Hispanic
41.6%
40%
35%
34.4% 35.4%
Hispanic
37.6%
32.5%
30.4%
30%
25%
20%
16.0% 14.6%
14.5%
15%
17.1%
13.6%
12.4%
10%
5%
0%
Mild ID
National Core Indicators (NCI)
Moderate ID
Severe ID
Profound ID
Demographic Differences:
Mobility level (p < .001)
90%
80.9% 81.0%
80%
White, Non-Hispanic
African American, Non-Hispanic
75.0%
Hispanic
70%
60%
50%
40%
30%
20%
15.4%
11.1% 11.2%
10%
9.6%
8.0%
7.9%
0%
Moves self around environment
without aids
National Core Indicators (NCI)
Moves self around environment with
aids or uses wheelchair independently
Non-ambulatory, always needs
assistance
Demographic Differences:
Other diagnoses
50%
White, Non-Hispanic
45%
African American, Non-Hispanic
40%
Hispanic
35.7%
35%
30.0%
28.1%
30%
25%
20%
15%
14.0%
10.7%
13.7%
11.4%
10%
5.8%
5%
4.6%
4.0%
8.5%
5.7%
2.3%
0.8% 0.5%
0%
Autism-Spectrum
Disorder (p < .001)
National Core Indicators (NCI)
Mental Illness or
Psychiatric Diagnosis
(p < .001)
Hearing Loss- Severe or
Profound (p < .01)
Down Syndrome
(p < .001)
Alzheimer's
(p < .001)
Demographic Differences:
Needs support to manage problem
behavior (p < .05)
Poor health status (p < .01)
50%
50%
45%
49%
40%
48%
35%
47%
30%
46%
25%
45%
20%
44%
15%
43%
10%
42%
5%
5.2%
3.9%
2.7%
0%
46%
46%
42%
41%
40%
White, NonHispanic
African
American,
Non-Hispanic
National Core Indicators (NCI)
Hispanic
White, NonHispanic
African
American,
Non-Hispanic
Hispanic
Demographic Differences:
Residence Type (p < .001)
50%
46.5%
45%
41.5%
40.4%
40%
White, Non-Hispanic
African American, Non-Hispanic
35%
Hispanic
32.5% 32.3%
29.9%
30%
25%
20%
15%
13.2% 12.4%
8.5%
10%
5%
11.6%
9.0% 8.9%
4.9% 4.6%
3.8%
0%
Institution
National Core Indicators (NCI)
Community-Based
Residence
Independent Home/apt
Parent/relative’s home
other
Preventive Care:
Multivariate Logistic Regressions
State
Race
White, Non-Hispanic
African American, Non-Hispanic
Hispanic
Primary
care doc
***
Phys
exam
***
ref
1.5
0.98
1.01
1.24
1.18
ref
0.82
0.95
1.01**
0.96
.35***
Dental
exam
***
***
ref
0.60***
0.85
.99***
0.99
.53**
ref
0.69
0.71
0.83
0.58
1.02
0.96
1.1
1.36
***
ref
0.76
0.28***
0.21***
0.48*
ref
0.76
0.82
0.73
0.91
1.14
1.09
0.95
0.75*
***
ref
0.47**
0.15***
0.11***
0.29***
ref
1.03
1.21
0.73*
1.11
ref
0.88
0.81
0.98
1.05
Age
Gender: male
Primary Language: Not English
Level of ID
Level ID: No ID
ref
Level ID: Mild ID
0.66
Level ID: Moderate ID
0.67
Level ID: Severe ID
0.46
Level ID: Profound ID
1.01
Other diagnosis: Mental Ill
0.68*
Other diagnosis: Hearing loss
0.97
Other diagnosis: Downs
1.66
Poor Health
1.17
Residence Type
Residence Type: Institution
ref
Residence Type: Community Based Residence
1.02
Residence Type: Independent home/apt 0.83
Residence Type: Parent/relative's home 0.9
Residence Type: other
1.06
Mobility
Mobility: Moves self without aids
ref
Mobility: Moves self with aids
1.39
Mobility: Non-Ambulatory
1.19
Expression: Spoken
1.19
Support for behav. problems
1.48*
Coefficients for states not shown; * p<.05, ** p<.01, ***p<.001
National Core Indicators (NCI)
Vision
Hear test Flu vacc
screen
***
***
***
**
***
ref
ref
ref
1.25**
1.12
0.68***
1.2
1.44
0.78
1
1
1.03***
0.96
1.03
0.85*
0.68
0.64
0.85
*
*
ref
ref
ref
1.09
1.08
1.28
0.96
1.15
1.54*
0.81
1.17
1.53*
0.98
1.32
1.90**
1.1
1.20*
1.22*
1.22
3.30***
1.1
1.19
1.78***
1.21
0.92
0.82
1.47*
***
***
***
ref
ref
ref
0.95
0.37***
0.44**
0.58***
0.17***
0.17***
0.40***
0.11***
0.15***
0.87
.22***
.28***
***
***
ref
ref
ref
0.81**
0.99
1.38**
0.69***
0.82
1.55**
1.08
1.23
1.02
0.94
1.09
1.14
Pneum
vacc
***
ref
0.82
0.85
1.04***
0.94
1.05
ref
0.76
0.86
1.05
0.96
1.21*
1.18
1.19
2.51***
***
ref
0.8
0.59**
0.59**
0.78
***
ref
1.59***
2.13***
0.72**
1.14
Conclusions:
Effect of race/ethnicity
•
There are differences in likelihood of receiving preventive care by
race/ethnicity


•
White, Non-Hispanic respondents less likely to have a primary care doc
White, Non-Hispanic respondents more likely to have had a physical exam, a dental exam, a flu
vaccination and/or a pneumonia vaccination
Adults with IDD of different racial/ethnic backgrounds also differ in other
demographic factors








Where they live
Their age
Their means of expression
Their language
Their level of ID
Other diagnoses
Their level of mobility
Their health
• It is crucial to control for these demographic factors.
National Core Indicators (NCI)
Conclusions:
Effect of race/ethnicity
•
Controlling for other demographic factors, racial/ethnic background is a
significant predictor for :



•
Has had dentist visit in past year
• African American, Non-Hispanic respondents are significantly less likely to have had a
dentist visit in the past year
Has had eye exam in past year
• African American, Non-Hispanic respondents are significantly more likely than White, NonHispanic respondents to have had an eye exam in the past year
Has had flu vaccine in past year
• African American, Non-Hispanic respondents are significantly less likely than White, NonHispanic respondents to have had a flu vaccine in the past year
Controlling for other demographic factors, racial/ethnic background is no
longer a significant predictor for:




Has primary care doctor
Has had physical exam in past year
Has had hearing test in the past five years
Has ever had pneumonia vaccine
National Core Indicators (NCI)
Conclusions
Other Findings
•
Speaking a language other than English has a negative effect on receipt of
preventive care.
•
Residence type is strongly related to use of preventive care.
•
Individuals with less mobility are significantly more likely than those who are selfmobile (without using aids) to have been vaccinated against the flu and pneumonia.
•
Age is significantly related to receipt of physical exam, dentist visit and flu and
pneumonia vaccines.
•
Being in poor health is a significant predictor of receiving flu and pneumonia
vaccinations.
•
State in which individual resides is a highly significant predictor of receipt of all
preventive care variables – much state to state variation.
National Core Indicators (NCI)
Limitations
•
“Don’t know” responses are excluded from analyses. For some health care
variables, the rate of “don’t know” responses are fairly high.
•
Data less likely to be available in independent/family home settings – i.e. higher
rates of “don’t know” responses.
•
Choice is not taken into account - what if person does not want to get a specific test?
•
There may be other pertinent factors affecting likelihood of receipt of care that
were not controlled for.
•
Standards regarding recommended frequency of care used are for general
population.
•
No data on income or SES. Previous research has shown that racial/ethnic
disparities are often confounded by disparities based on SES.
National Core Indicators (NCI)
References
•
•
•
•
•
•
•
•
•
Ashton, C., Haidet, P., Paterniti, D., Collins, T., Gordon, H., O’Malley, K., Petersen, L., Sharf, B., Suarez-Almazor, M., Wray,
N., Street, R. (2003). Racial and ethnic disparities in the use of health services: Bias, preferences or poor
communication? J Gen Intern Med. 18:146-152
Bershadsky, J. & Kane, R. (2010). Place of residence affects routine dental care in the intellectually and developmentally
disabled adult population on Medicaid. Health Services Res. 45(5 pt 1: 1376-89
Bershadsky, J., Taub, S., Bradley, V., Engler, J., Moseley, C., Lakin, K. C., Stancliffe, R. J., Larson, S., Ticha , R. & Bailey, C.
(2012). Place of residence and preventive health care for developmental disabilities services recipients in twenty
states. Public Health Reports, 127, 475-485.
Bonito, A., Eicheldinger, C., Lenfestey, N. (2005). Health disparities: Measuring health care use and access for
racial/ethnic populations. Final Report, Part 2. Retrieved on March 4, 2013 from http://www.cms.gov/ResearchStatistics-Data-and-Systems/Statistics-Trends-and-Reports/Reports/downloads/bonito_part2.pdf
Havercamp, S., Scandlin, D., Roth, M. (2004). Health disparities among adults with developmental disabilities, adults
with other disabilities, and adults not reporting disability in North Carolina. Public Health Reports. 119 418-426
Jones, C. (2000). Levels of racism; A theoretic framework and a gardener’s tale. American Journal of Public Health.
90(8): 1212-1215
Kawachi, I., Daniels, N., Robinson, D. (2005). Health disparities by race and class: Why both matter. Health Affairs.
24(2):343-352
Magaña, S., Parish, S., Rose, R., Timberlake, M., Swaine, J. (2012). Racial and ethnic disparities in quality of health care
among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities. 50 (4)
287-299
Newacheck, P., Hung, Y., Wright, K. (2002). Racial and ethnic disparities in access to care for children with special
health care needs. Ambulatory Pediatrics. 2 (2): 247-254
National Core Indicators (NCI)
Contacts
• HSRI
 Julie Bershadsky: jbershadsky@hsri.org
 Dorothy Hiersteiner: dhiersteiner@hsri.org
• NASDDDS
 Mary Lee Fay: MLFay@nasddds.org
• NCI website: www.nationalcoreindicators.org
National Core Indicators (NCI)