Coverage For All: Voices of the Uninsured PROJECT: Hawaii Coverage for All SPONSORING AGENCY: United States Department of Health and Human Services (US DHHS), Health Resources and Services Administration (HRSA), State Planning Grant (SPG) PRIME CONTRACTOR: Hawaii State Department of Health PRIME CONTRACT NO.: P09 OA SUBCONTRACTOR: Research Corporation of the University of Hawaii (RCUH),University of Hawaii, Social Science Research Institute (SSRI), SUBCONTRACT NO.: RCUH Program No Research Team Heather Young Leslie, Anthropology Carol Murry, Health Policy D. William Wood, Sociology J.D. Baker and Jill McGrath, Graduate Assistants

Purpose of Project Introduce the voices of the uninsured into the policy formulation process Inform quantitative analyses and policy-makers of possible meanings and implications of findings – Who are the uninsured? – Why are they uninsured? – What is the experience of being uninsured? – How do the uninsured obtain care? – Impacts of uninsured status on individuals, families, providers, systems, and the State – Desires for coverage

Methodology: Multiple Methods – Long, semi-structured interviews, future imaging, field interviews, qualitative analysis Multiple Voices – Uninsured – Neighbor islands, various communities, ethnicities, categories of person – Providers

Results What we’ve found so far…

Coverage For All Voices of the Uninsured Phase 1: Interview Sites

Age and Gender (n=131)

Employment (n-131. Note: some categories overlap)

Housing (n= 131)

Giving voice to the numbers Young adults Neighbor island Eligible but not enrolled Native Hawaiian

Young and Uninsured..”like even when I was working like several hours a week, what would be considered full-time, I still didn’t have coverage.. …a lot of my friends didn’t have any kind of insurance..(what did they do?)..they didn’t get sick.”..”.you can have health insurance if your employer is kind enough to grant it to you, if you want to spend $300 or $400/month for it, or if you don’t make any money and the state has to provide it for you..those are the conditions.. You can either play or not.. Up until now, yeah, I’ve chosen not to play the game”….”.I have this huge hospital bill I can’t pay..they stitched me up and let me go and I had to sleep in front of the hospital until the bus started..they kind of like rushed me, kind of pushed me out, didn’t really care, just like another person that was hurt that didn’t have insurance kind of deal…compared to somebody who has good insurance. They’d take care of you, try to comfort you, maybe let you stay the night in a room.”

Neighbor Islands - Unemployment and little access “To me, my downfall right now is transportation. (..no buses on Molokai?) Not here. Yeah, I would love to get there (gym, diabetes education, group therapy), but again, transportation…Transportation, besides the insurance, yeah. Insurance is number one. (HandiVan in Molokai?) No.” “I’ve been with the sugar for 34 years..until they closed it up..(Keokaha?) yeah..two years ago

Eligible but not covered Information Dissemination Failure  “I Had QUEST.... I lost it, and don’t know why... I don’t know if I’m eligible now…” ..(in response to question about HCK) “I heard about them and I thought that was what I signed up for. I may be mistaken. It may be something else I filled out at the clinic.”

Eligible but not covered The Burden of Q.U.E.S.T.  “…But who is out there to help us? That is what I want to know… I’ve been everywhere; I’ve spent money with telephone calls….I’ve called people; they’ve called me back. I got to wait days. You know, I’m trying to put my life – like who is there to help us?”  "I felt like, what do I pay taxes for, if I can't even get help out of the state?.... We all work, I worked half my life, I'm not asking for a hand out, I'm asking for help! For me as a worker, it breaks my pride”

Native Hawaiian Hopefully, it’s not to the point, like the Hawaiian people say we wait until we almost dead and then we go. I hope it doesn’t get to that point.”

Other themes The Dilemma of Disability Inadequate Oral Health Care The Health Care Lottery

Key Issues of Informants The Dilemma of Disability  They asked: "how you gonna survive if we turn you down?".... "I guess I'll go fishing, hunting, even though I got a bad leg... maybe I'll turn to crime. That's what the government is pushing me to do…  “Dialysis or Lou Gehrig’s disease - that is what she told me on the phone. That’s the only way they can cover…I told them, you know, I need something now before I end up on dialysis. She told me..you’re caught between a rock and a hard place. I said..I’m stuck, no medical.”

Key Issues of Informants Inadequate Oral Health Care  “My denture broke and it’s all-misaligned because I tried to put it back together with Crazy Glue. It works, but I don’t know if it was my gums that shrunk or if I need to use some of that Polident stuff (which I don’t have). It’s loose and it rocks a lot. After breaking it one time I’m really, really scared. “  “I have some kind of jaw – my teeth fall out. --- we’ve had to pull our own teeth before, because we didn’t have dental insurance.”

Key Issues of Informants The Health Care Lottery  I should have had a mammogram nine months ago…if they find something… it’s a preexisting condition and if I don’t have health insurance and I try to go get a mammogram now, they find something? Frankly, that scares the hell out of me.  “OK, if I have a good healthy year, maybe I might get sick and really need to go to the doctor once and that is basically what it costs for the insurance for the year or actually less. So I kind of always bank on being healthy”  “..when I was taking my son to soccer, I told him that I’d be trying to get health insurance for him and he said, you mean when I have aches and pains I won’t have to say, oh, it’s nothing mom, I’ll tell you how it really feels - I felt terrible when he said that..”