Presented by: Ian Hill, MPA, MSW Holly Stockdale, MPP, MPH The Urban Institute With

1. What Parents Say About Access to Care and How it Affects Decisions Regarding Enrollment in Medicaid and SCHIPPresented to: Academy Health ’04 San Diego, CA Presented by: Ian Hill, MPA, MSW Holly Stockdale, MPP, MPH The Urban Institute With Marilynn Evert Kathleen Gifford Health Management Associates, Inc. 6 June 2004 Research supported by the Robert Wood Johnson Foundation

2. Background/Purpose • Number of children without health insurance has declined in recent years, yet many eligible kids remain uninsured • Covering Kids and Families (CKF) initiative funded by Robert Wood Johnson Foundation to support outreach and enrollment efforts • CKF Evalulation designed to assess contribution to coverage • Through focus group component, we set out to examine how parents’ experiences with access affect their decisions to enroll their children in coverage

3. Study Design • 13 groups in 5 cities—Boston, Denver, Los Angeles, Mena, San Antonio • Cities selected to represent both “good” and “bad” access environments and geographic diversity; 1 rural site included • Two types of groups: parents of kids enrolled in Medicaid/SCHIP; parents of uninsured kids (138 parents, total) • 3 Spanish-speaking groups in Denver and LA • Participants recruited with help of CKF grantees

4. Issues Explored • Access to care • Out-of-pocket costs • Satisfaction with care • Past experiences: insured, uninsured, privately insured • How/what parents heard about Medicaid and SCHIP • Experiences with Medicaid/SCHIP enrollment and renewal • Values regarding health insurance • How access experiences affect enrollment decisions

5. Access to Primary Care • Medicaid and SCHIP • Access to primary care described as “good” “There are lots of doctors on the list I get from MassHealth” (Boston) “I found my doctor through the Healthy Families directory (LA) • Though some faced geographic barriers “I do find it difficult to get to the provider because of transportation.” (LA) • Parents in Boston & Mena used private physicians, while those in Denver, LA, and San Antonio relied on public clinics

6. Access to Primary Care (cont.) Uninsured • Experiences also quite good, but some parents experienced long waits & discontinuity of care, especially in public clinics “My doctor continued to see my child until I got her insurance.” (Boston) “My local doctors are very good about seeing us…we have a relationship.” (Mena) “It makes a big difference where you go. (At the clinic) you sit and wait all day.” (San Antonio) “You don’t feel at ease because it’s always a different doctor… Each time you go to the clinic, it’s like starting over again.” (LA)

7. Dental and Specialty Care • For parents of insured and uninsured children, dental and specialty care were more difficult to access • For dental, problems with availability, accepting Medicaid “It is difficult to find a dentist who accepts MassHealth, and usually we have to pay out of pocket.” (Boston) “I’m going to Tijuana right now for a dentist. I’m paying out of pocket, but it is cheaper there.” (LA) • For specialty, difficulty navigating systems, long travel distances, long waits “If you need anything other than a regular doctor, you have to go to Little Rock or Fort Smith.” (Mena)

8. Health Care Costs and Cost Sharing • Dramatic differences between insured and uninsured • Medicaid and SCHIP: • Cost sharing considered very affordable “Copays…are fine; the $5 doesn’t make me think twice about seeking care.” (Boston) “It’s actually nice…makes you feel…like you’re doing your part.” (Mena) • Uninsured: • Parents frequently delayed care due to inability to pay “You don’t take them unless you have to…unless it’s an emergency.” (Denver) “ It makes me feel horrible to know that my daughter has a 105 degree fever and all I can do is cool her down with rags.” (Denver)

9. Satisfaction with Care • Satisfaction levels generally very high, especially among parents with kids on Medicaid and SCHIP: “There’s nothing better than MassHealth.” (Boston) “We’re very satisfied. The pediatricians are thorough and we relate very well to them.” (San Antonio) • Uninsured parents more likely to express dissatisfaction with long waits, rude service, lack of personal attention “They don’t even want to talk to you! It’s one bad experience after another….” (Los Angeles) • However, Boston and Mena uninsured reported good experiences which could be attributed to “strong personal relationships” with physicians

10. Special Access Issues for Spanish-Speaking Families • Generally, Spanish-speaking parents had similar experiences as English-speaking parents • However, additional issues related to language barriers and discrimination were common “I could not get an appointment because they claimed nobody in the office could speak Spanish. But I think they could… (Denver).” “I fought to get a worker who understands me because I don’t know what he is telling me and he does not know what I am telling him.” (Los Angeles)

11. How/What Parents Heard about Medicaid/SCHIP • HOW: friends, DSS caseworkers, social service agencies, hospitals, FQHCs, schools, TV & radio • WHAT: mostly negative “I heard you have to give them information on your life history every 6 months (Denver).” “I was hesitant to apply because I heard they investigated income (Los Angeles).” “We thought ARKids was a scam, at first.” (Mena) • Exception: Boston, where parents heard such positive things as “they pay for everything” and “it’s accepted everywhere”

12. Enrollment Experiences • SCHIP application process described as easier than Medicaid “Healthy Families keeps it simple. They only want to know your kids information (Los Angeles).” “It was so easy I don’t remember it.” (Mena) • Frustrations with Medicaid application included: too many personal questions, long waits for processing, and feeling that the process is “complicated” and “degrading” “The social services department was not very helpful or sympathetic to my case.” (Denver) “It’s humiliating to have to go to DPSS.” (Los Angeles) “Case workers are overloaded and we don’t get our cards on time…” (Denver) “It’s a long wait, and a lot of paperwork that you fill out over and over…” (San Antonio)

13. Renewal Experiences • Most parents with insured children said renewal was easy “It was easy…all the information was already there.” (Los Angeles) “It’s so easy, you might forget to do it.” (Mena) “Most of the paperwork can be handled by mail or fax.” (San Antonio)

14. Special Enrollment Issues for Spanish-Speaking Parents • Spanish-speaking parents described similar experiences as English-speakers, but also raised serious issues re language and discrimination “I did not call the number on the TV because I was afraid there would be no one to answer my questions in Spanish.” (Denver) “I had a problem when I tried to apply for Medicaid. The social workers did not cooperate with me…they would make excuses.” (Los Angeles) • Additional issues surfaced related to “public charge” “They say that if you get help from the government, you will always have a mark saying that you asked for help. So I have not applied.” (Los Angeles)

15. What Parents Value About Health Insurance • Unanimously parents valued health insurance “It provides you with peace of mind, knowing that you can care for your kids if they get sick.” (Boston) “It takes the stress away.” (Denver) “Insurance gives me the wherewithal to keep my child healthy, to keep up with his shot and visits.” (Denver) “It takes cost out of the picture, and allows me to get care that I can afford.” (Mena) “It allows me to go to any hospital, or any doctor, and get better customer service.” (San Antonio)

16. How Access Experiences Affect Enrollment Decisions • No matter how difficult families found application/renewal, and no matter what problems were encountered accessing care, virtually all parents said they would continue to seek coverage “It is absolutely worth the effort.” (San Antonio) “You go through one day of burden for the good of your kids.” (San Antonio) “You’ve got to do it. You’re desperate without health insurance.” (Los Angeles)

17. Conclusions • Many positive findings: • Kids in Medicaid/SCHIP enjoy good access to care • Uninsured kids also mostly able to obtain care • Great value placed on health insurance • Parents unanimous in believing health insurance was “worth it” regardless of hassles with applications, or problems with access

18. Conclusions (cont.) • Clearly, though, issues remain to be addressed • Dental and specialty care more problematic to access, for both insured and uninsured groups • Out-of-pocket costs for uninsured pose serious barrier to use • Medicaid application process still overly complex/frustrating • Spanish-speaking families confront numerous additional barriers, in both language and perceived discrimination Next Steps: Recognizing limitations of focus groups, CKF evaluation will assess the impacts of access on enrollment quantitatively