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Consequences of delayed or denied access Consequences of delayed or denied access to health care services: Perceptions of to health care services: Perceptions of

individuals with disabilitiesindividuals with disabilities

Melinda Neri, Thilo Kroll, and Jessica Scheer

NRH Center for Health & Disability ResearchWashington, DC

www.nrhchdr.org

APHA Annual MeetingAtlanta, GA

October 22, 2001

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Research ObjectivesResearch 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

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Study Design, Methodology & Study Design, Methodology & AnalysisAnalysis

• 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

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Sample DescriptionSample 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

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Principal BarriersPrincipal 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)

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ConsequencesConsequencesPhysicalPhysical

– Decline in condition and general health

– Unable to perform ADL’s/IADL’s

– Decreased mobility

– Development of secondary conditions

PsychologicalPsychological

– Compromised emotional well-being and self-esteem

– Depression and stress

EconomicalEconomical

– Lack of therapy and compromised occupational performance

– Need for additional health care services = increased cost

SocialSocial– Impact on relationships and social roles

– Restricted social and familial participation

Independence IssuesIndependence Issues

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Case StudiesCase Studies

Illustrating the sequential effects and consequences of barriers to health care,

e.g. barriers to care increased service utilization decreased independence

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Martin: 52, SCIMartin: 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.”

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Maria: 52, CPMaria: 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…”

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ConclusionsConclusionsWhat 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

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ImplicationsImplications

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