Access to Health Care Services for
People with Disabilities:
Defining the Barriers and
Successful Strategies for Change
Bethlyn Houlihan, MSW, MPH
Center for Health Quality Outcomes and Economic Research
and Boston University School of Public Health
Academy Health Annual Conference
June 8, 2004
Background
„ QI project for managed care plan—barriers
seen to accessing MH/SA services for people
w/ disabilities
„ Lit review
„ Hypotheses:
1) Consumers report physical
accessibility barriers less often than other
barriers in accessing health care services
2) There are differences in perceptions of
access between providers and consumers
Funded by NIDRR, Grant #H133A990014
Consumer Sample &
Methodology
Study Design
„ Large study in Massachusetts: nontraditional
„
„
„
„
barriers; all disabilities across lifespan;
spectrum of health care services; consumer and
provider perspective
Focus groups before survey
Advisory board throughout
30 min. semi- structured survey w/ 25+ items
Key consumer- oriented variables:
„
„
Consumer classification criteria
Barriers to access
„ Analysis: compare frequency of barriers (%) by
„ 2 consumer samples: Medicaid vs. Community
„ Focus: adult Medicaid beneficiaries in managed
care plan
Random sample
N=540 (74% response rate)
„ Phone & mail; in English & Spanish
„ Insured at time of survey
„ Low income
„ Receiving SSI
„
„
relative ranking
Consumer Classification
Survey Criteria
„ New disability paradigm: “interaction between
personal variables and environmental conditions”
(US DOE, 1998) rather than disease/disability
„ 6 categories of functional limitation:
1) Mobility
2) Psychiatric
3) Cognitive
4) Communication
5) Visual
6) Chronic Illness/Other
„ Self report
„ 4 criteria used:
„ Disability/limitation/diagnosis
„ Help w/ personal care, ADLs due to disability
„ Difficulty learning, remembering or
concentrating due to disability
„ Use of special equipment
„ Categories overlapped
(except Chronic Illness/Other)
1
Examples of Consumer
Categorization II
Examples of Consumer
Categorization I
„
Mobility
1)
2)
3)
„
2)
2.
Disability by Diagnosis vs.
Functional Limitation
Disability Category
Top Diagnoses
Functional Limitation
Cognitive
Mobility
Psychiatric
Communication
Visual
Chronic Illness/Other
Medicaid Sample
49% Psychiatric
27% Arthritis
16% Hypertension
71%
52%
48%
6%
13%
13%
Medicaid Sample Descriptives
Characteristic
Medicaid Sample
Chronic Illness/Other
Note: No functional limitationÆ”Other”
„ Asthma, cancer, etc.
Top Barriers Examined
„ No insurance/inadequate insurance
„ Transportation/distance to provider
„ Communication w/ provider
„ Understanding provider
„ Finding knowledgeable providers
„ Obtaining appointments or referrals
„ Disrespect/Insensitivity
„ Physical access (entrance, restrooms,
equipment)
Hyp. 1: Medicaid Consumers
Barriers by Ranking and %
Chronic
Illness/Other
(n=54)
Transportation
1
(50%)
3
(19%)
No insurance/inadequate
2
(46)
1
(33)
Finding knowledgeable providers
3
(41)
5
(11)
Communication w/ providers
4
(38)
4
(15)
Making appointments
5/6
(32)
2
(20)
63% Fair/Poor
31% Good/Very Gd
4% Excellent
Disrespect or insensitivity
5/6
(32)
6/7
(9)
Understanding providers
7/8
(27)
8
(6)
Getting a referral
7/8
(27)
6/7
(9)
93% Primary Care
72% Specialty Care
67% Dental Care
Using equipment
9
(12*)
9
(4)
Getting into building, use restroom
10
(<7)
10
(<2)
70% Female
Race/Ethnicity
52% White
27% Hispanic
18% Black
Annual Income
54% < $10,000
Severity of Disability
51% Severe
34% Moderate
11% Mild
Service Utilization
Visual problems
Groups w/
Limitations
(n=486)
Gender
Health Status
Use TTY OR
Hearing loss, speech impediment, etc.
Visual
1.
„
Autism, learning disability, etc. OR
Yes to “Trouble learning, etc.” b/c of
disability
Communication
1.
Bipolar, depression, etc. (DSM
- IV)
Cognitive
1)
„
„
Psychiatric
1)
„
Cane, wheelchair, etc. OR
SCI, “walking problem” OR
SSA diagnosis & need PCA
Barrier
NOTE: *Exception: mobility = 20%, but same ranking
2
Consumer Comments
Consumer Comments
„ Transportation: “[Drivers] pick me up or
drop me off a couple of hours early or late.”
“Seeking services… becomes a whole day
affair…a big chore…”
„ Insurance: “[The mental health staff] were
much more concerned with whether or not
they were getting their money than in my
therapy.”
„ Knowledgeable Provider: “[Providers]
don’t take the time to know what you need.”
„ Communication: “I’ve been given meds
when I don’t understand what they’re for.
[Communication] takes patience...”
„ Understanding:
“[Doctors] act condescending, use big
words, and have messy handwriting. I don’t
know what they mean. It’s very
frustrating.”
Relative Frequency of Barriers
by Provider Type
Consumer Comments
„ Appointments: “One place will accept
MassHealth, but you can’t get an
appointment for 3-4 months even if it’s
urgent. They send you to the ER to get a
tooth pulled.”
„ Disrespect/Insensitivity: “Providers think
that you cognitively can’t make your own
decisions. The issue is really about getting
people to respect you and not make
decisions about your ability.”
„ Highest % Barriers
„ Dental
„ Outpatient mental health/substance abuse
„ Moderate % Barriers
„ Primary care
„ Specialty care
„ Lowest % Barriers
„ All inpatient services
„
„
„
„
Hyp. 2: Consumer/Provider
Comparison of Barriers
Access Barrier
Medicaid
(N=540)
Providers
(N=379)
Transportation
1
1
No insurance/inadequate
2
4
Communicating w/ providers
3*
3
Making appointments
4
5
Understanding providers
5
2
Using equipment
6
6
Getting into building, use restroom
7
7
*Note: ranking changed due to removal of knowledgeable provider &
disrespect/insensitivity
General
Mental health
Alcohol/drug detox
MMTP
Summary of Findings
Hyp. 1: Consumer Report
„ Functional limitation as meaningful grouping
„ Physical accessibility = least common
„ Overlapping “Top 3” non
- physical barriers
„
„
Transportation, insurance, knowledgeable provider
Regardless of limitation
„
Exception: chronic illness (2nd = appointments)
„ More barriers w/ some provider types
Hyp. 2: Consumer vs. Provider
„ 2 of top 3Æsame barriers
„
Provider’s experience: understanding vs. insurance
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Consumer Solutions
„ “I tend to write back and forth with the doctor. They used
a book with pictures in it—a kind of medical dictionary—
that shows things in simple terms.”
“Visual communication is important for everyone.”
„ “If a hospital knows that a high population of deaf people
live in the area, they could be better equipped. They
should look at the census…so they know where services
are most needed.”
„ “Once a staff person who was a patient advocate helped
me in the ER. He called my employer to explain why I
wouldn’t be coming in, found my car, and helped me get
x-rays.”
Significance to Policy &
Clinical Practice
„ Results prior to cuts—more severe today
„ Prioritization w/ limited resources & time
„ Provider participants’ innovations
„ Knowledge: Population- or disability-specific services
„ Transportation: Home-based, shuttle service
„ Understanding: Simple language, hand-outs
„ Quality of care changes
„ Accessibility for ALL, not just ppl w/ disabilities
„ TIME required
„ Resource listing–sensitivity training/referrals
„ Professional patient advocate
For a full report
of this study, please email:
bvergo@bu.edu
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