Bethlyn Houlihan, MSW, MPH

1. 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 Funded by NIDRR, Grant #H133A990014

2. 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

3. 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

4. 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

5. 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

6. 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)

7. Examples of Consumer Categorization I • Mobility • Cane, wheelchair, etc. OR • SCI, “walking problem” OR • SSA diagnosis & need PCA • Psychiatric • Bipolar, depression, etc. (DSM-IV) • Cognitive • Autism, learning disability, etc. OR • Yes to “Trouble learning, etc.” b/c of disability

8. Examples of Consumer Categorization II • Communication • Use TTY OR • Hearing loss, speech impediment, etc. • Visual • Visual problems • Chronic Illness/Other Note: No functional limitation”Other” • Asthma, cancer, etc.

9. Disability by Diagnosis vs. Functional Limitation

10. 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)

11. Medicaid Sample Descriptives

12. Hyp. 1: Medicaid ConsumersBarriers by Ranking and % NOTE: *Exception: mobility = 20%, but same ranking

13. 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.”

14. 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.”

15. 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.”

16. 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

17. Hyp. 2: Consumer/Provider Comparison of Barriers *Note: ranking changed due to removal of knowledgeable provider & disrespect/insensitivity

18. 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 3same barriers • Provider’s experience: understanding vs. insurance

19. 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.”

20. 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

21. For a full report of this study, please email: bvergo@bu.edu