1. RTC Managed Care & Disability Consequences of delayed or denied access to health care services: Perceptions of individuals with disabilities Melinda Neri, Thilo Kroll, and Jessica Scheer NRH Center for Health & Disability Research Washington, DC www.nrhchdr.org APHA Annual Meeting Atlanta, GA October 22, 2001

2. RTC Managed Care & Disability Research Objectives To identify access barriers to obtaining timely and appropriate health care services To identify the physical, psychological, economical, and social consequences of compromised access to care To contextualize the health care experience of people with disabilities using qualitative methods To describe the sequential effects of delayed access, e.g. increased service utilization and reduced independence

3. RTC Managed Care & Disability Study Design, Methodology & Analysis Descriptive, exploratory qualitative study Semi-structured, 45-minute telephone interviews 30 non-randomly selected respondents from a national survey of 500 working-age adults with CP, MS, or SCI Questions addressed the barriers and consequences of compromised access to primary and specialty care, DME, rehab services (PT, OT, ST), and mental health care Interviews were audiotaped and transcribed, then coded and analyzed using systematic topic delineation and QSR’s qualitative software, N*Vivo

4. RTC Managed Care & Disability Sample Description Sex: 16 female, 14 male respondents Disability status: 10 CP, 10 MS, 10 SCI Primary insurance type: 14 FFS, 16 MC Mean age: 44.8 years; SD: 8.30 Co-Morbidity: 70%; arthritis and depression Employment: one-third employed Primary coverage:13 Medicare, 2 Medicaid, 13 Private, 2 Other

5. RTC Managed Care & Disability Principal Barriers Lack of accessible, timely, and convenient transportation Inaccessible provider facilities and diagnostic equipment Insufficient/limited disability-specific knowledge and skill-set among providers Difficulties obtaining timely appointments Insufficient plan coverage, e.g. maintenance/physical therapy and DME High out-of-pocket costs (co-pay/deductible)

6. RTC Managed Care & Disability Consequences Physical –Decline in condition and general health –Unable to perform ADL’s/IADL’s –Decreased mobility –Development of secondary conditionsPsychological –Compromised emotional well-being and self-esteem –Depression and stressEconomical –Lack of therapy and compromised occupational performance –Need for additional health care services = increased costSocial –Impact on relationships and social roles –Restricted social and familial participation Independence Issues

7. RTC Managed Care & Disability Case Studies Illustrating the sequential effects and consequences of barriers to health care, e.g. barriers to care increased service utilization decreased independence

8. RTC Managed Care & Disability

9. RTC Managed Care & Disability Martin: 52, SCI “My shoulders have gotten to a point now to where that is creating a problem with transferring. If I could have gotten physical therapy done earlier, there’s a great possibility this problem could have been helped. What’s going to happen now is it’s just shortening the time I’m going to be able to live by myself. I’m going to have to go into a nursing home eventually, but a lot quicker…I’ll be lucky if I can stay by myself, say, another three, four years.”

10. RTC Managed Care & Disability

11. RTC Managed Care & Disability Maria: 52, CP “A lot of my mobility was cut down, and I couldn’t do the things I normally do. My husband would have to help me out of bed… things didn’t get done that normally got done. I couldn’t stand and cook meals like I usually do, and I couldn’t clean…house, stand and do dishes or things like that.” “…I can’t sit around the house and do nothing. I have to be able to feel like I’m worthwhile doing something, even if it’s sitting down and stuffing envelopes…The doctor didn’t feel it was necessary that I have OT…”

12. RTC Managed Care & Disability Conclusions What is needed? A better understanding of…. the access barriers (e.g. transportation and accessibility) and their sequential and interrelated consequences the nature and scope of these consequences for people with disabilities the social context in which these consequences occur

13. RTC Managed Care & Disability Implications For the consumer with a disability... Autonomy over decision-making regarding health care choices For health care providers and health plans... Improved knowledge and skill set, e.g. disability literacy For health care delivery… Better access to, and timely delivery of, maintenance therapies and DME