access to health care services for people with disabilities: defining the barriers and successful...
TRANSCRIPT
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 ConferenceJune 8, 2004
Funded by NIDRR, Grant #H133A990014
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
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 relative ranking
Consumer Sample &Methodology
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
Consumer Classification New disability paradigm: “interaction between
personal variables and environmental conditions” (US DOE, 1998) rather than disease/disability
6 categories of functional limitation:
1) Mobility 4) Communication
2) Psychiatric 5) Visual
3) Cognitive 6) Chronic Illness/Other
Survey Criteria
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)
Examples of Consumer Categorization I
Mobility1) Cane, wheelchair, etc. OR2) SCI, “walking problem” OR3) SSA diagnosis & need PCA
Psychiatric1) Bipolar, depression, etc. (DSM-IV)
Cognitive1) Autism, learning disability, etc. OR2) Yes to “Trouble learning, etc.” b/c of
disability
Examples of Consumer Categorization II
Communication1. Use TTY OR
2. Hearing loss, speech impediment, etc.
Visual1. Visual problems
Chronic Illness/OtherNote: No functional limitation”Other” Asthma, cancer, etc.
Disability by Diagnosis vs. Functional Limitation
Disability Category Medicaid Sample
Top Diagnoses 49% Psychiatric
27% Arthritis
16% Hypertension
Functional Limitation
Cognitive
Mobility
Psychiatric
Communication
Visual
Chronic Illness/Other
71%
52%
48%
6%
13%
13%
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)
Medicaid Sample DescriptivesCharacteristic Medicaid Sample
Gender 70% Female
Race/Ethnicity 52% White
27% Hispanic
18% Black
Annual Income 54% < $10,000
Severity of Disability 51% Severe
34% Moderate
11% Mild
Health Status 63% Fair/Poor
31% Good/Very Gd
4% Excellent
Service Utilization 93% Primary Care
72% Specialty Care
67% Dental Care
Hyp. 1: Medicaid ConsumersBarriers by Ranking and %
Barrier
Groups w/ Limitations
(n=486)
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)
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)
Using equipment 9 (12*) 9 (4)
Getting into building, use restroom 10 (<7) 10 (<2)
NOTE: *Exception: mobility = 20%, but same ranking
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.”
Consumer Comments
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.”
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.”
Relative Frequency of Barriersby Provider Type
Highest % Barriers Dental Outpatient mental health/substance abuse
Moderate % Barriers Primary care Specialty care
Lowest % Barriers All inpatient services
General Mental health Alcohol/drug detox
MMTP
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
Summary of FindingsHyp. 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 typesHyp. 2: Consumer vs. Provider 2 of top 3same barriers
Provider’s experience: understanding vs. insurance
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
