How Medicaid and the State Children's Health Insurance Program Can Do a Better Job of Insuring Uninsured Children: The Perspectives of Parents of Uninsured Latino Children

How Medicaid and the State Children’s Health Insurance Program Can Do a Better Job of Insuring Uninsured Children: The Perspectives of Parents of Uninsured Latino Children Glenn Flores, MD; Milagros Abreu, MD; Vanessa Brown, BA; Sandra C. Tomany-Korman, MS Background.—Eight and a half million US children are uninsured, despite the 1997 enactment of the State Children’s Health Insurance Program (SCHIP) with $39 billion in funding, and Latinos continue to be the most uninsured racial/ ethnic group, with 24% (3 million) uninsured. Why SCHIP and Medicaid have not been more successful insuring uninsured children is unclear. Objective.—To identify reasons why parents are unable to insure uninsured Latino children in a state where all lowincome children are eligible for insurance. Methods.—Bilingual focus groups of parents of uninsured Latino children from Boston communities with the highest proportion of uninsured Latino children. Results.—The 30 parents interviewed in 6 focus groups had a mean age of 39 years; 63% never graduated high school and 33% were US citizens. The mean age of their children was 12 years, and the median annual family income was $9120. Parents reported 52 barriers to insuring children. Major obstacles included lack of knowledge about the application process and eligibility (especially misconceptions about work, welfare, and immigration), language barriers, immigration issues, income, hassles, pending decisions, family mobility, misinformation from insurance representatives (being told insurance is too expensive and parents must work), and system problems (including lost applications, discrimination, and excessive waits). Parents universally agreed case managers would be helpful in insuring uninsured children. Conclusions.—Even in a state where all low-income children are eligible for health insurance, current SCHIP and Medicaid outreach and enrollment are not effectively reaching uninsured Latino children. Parents need better information about programs, eligibility, and the application process, and a more efficient, user-friendly system. KEY WORDS:

children; focus groups; health services research; Hispanic Americans; pediatrics; uninsured

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leven percent of US children less than 18 years old (8.4 million) have no health insurance.1 Despite the State Children’s Health Insurance Program (SCHIP), both the number and proportion of uninsured American children have essentially not changed in the past 4 years.1,2 Risk factors for being uninsured include poverty1 and immigrant status.3 Latinos are by far the most uninsured racial/ethnic group of children, with 21% uninsured, compared with 7% of non-Latino whites, 14% of African Americans, and 12% of Asians/Pacific Islanders.1 Among US children who are both poor and uninsured, Latinos (1.1 million) outnumber all other racial/ ethnic groups.4

Not enough is known about why parents are unable to obtain health insurance for their uninsured children. Prior research identified lack of information about programs, enrollment-related problems, misunderstandings about income eligibility, paperwork, not needing/wanting coverage, problems maintaining coverage, having foreign-born parents, and Latino ethnicity as barriers to insuring uninsured children.5–7 Previous studies, however, relied on telephone interviews using close-ended survey questions and thus were unable to sample families without telephones (who often are at greatest risk for poverty and uninsured children) and obtain in-depth responses. To our knowledge, prior research has not used focus groups to obtain detailed information on Latino parents’ perspectives regarding why parents are unable to insure their uninsured children. In addition, recent work suggests that SCHIP may not be reaching populations most in need,8 but the reasons for this are unclear. Our study aim, therefore, was to identify the reasons why parents are unable to insure their uninsured children, with a focus on Latinos, the racial/ethnic group of US children at greatest risk of being uninsured.

From the Center for the Advancement of Underserved Children, Department of Pediatrics (Drs Flores, Abreu, Ms Brown, and Ms Tomany-Korman) and Department of Epidemiology, Health Policy Institute (Dr Flores), Medical College of Wisconsin and Children’s Hospital of Wisconsin, Milwaukee, Wis. Presented in part at the annual meetings of the Pediatric Academic Societies, Baltimore, Md, May 5, 2002, and the Academy of Health Services Research and Health Policy, Washington, DC, June 24, 2002. Address correspondence to Glenn Flores, MD, Center for the Advancement of Underserved Children, Department of Pediatrics, Medical College of Wisconsin, 8701 Watertown Plank Rd, Milwaukee, WI 53226 (e-mail: [email protected]). Received for publication April 19, 2004; accepted December 14, 2004. AMBULATORY PEDIATRICS Copyright q 2005 by Ambulatory Pediatric Association

METHODS Six focus groups were conducted of the primary caregivers (henceforth, referred to as parents) of uninsured Latino children in the Boston metropolitan area. Focus-

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Table 1. Selected Features of the Massachusetts Medicaid Program (MassHealth) and Children’s Medical Security Program (CMSP)* Feature Child must be documented US citizen, green card holder, refugee, or asylee Receipt of welfare assistance relevant Parental employment requirement Social security number required for parent/child Qualifying family income† Child must be in school Only biological parents can apply for child’s coverage Massachusetts state agency administering program

MassHealth

CMSP

Yes

No

No No Yes ,$35 920 No No Health and Human Services

No No No ,$35 920 No No Department of Public Health

*Data source: Massachusetts Division of Health Care Finance and Policy, Executive Office of Health and Human Services. Access to Health Care in Massachusetts. Boston, MA: Division of Health Care Finance and Policy; 2004:1–188. †To avoid any premium; based on 200% of the 2001 Federal Poverty Threshold (the year focus groups were held).

group methodology was chosen because it is generally viewed as one of the most useful mechanisms for in-depth exploration of people’s knowledge, experiences, attitudes, and motivations.9 Parents were recruited from the 2 Boston communities with the highest proportion of uninsured Latino children (as identified in a community-based study of 1100 families).10 These communities are East Boston and Jamaica Plain, where 37% and 27%, respectively, of Latino children are uninsured.11 Parents were recruited in face-to-face encounters with trained bilingual research assistants as the parents exited supermarkets, bodegas, laundromats, and beauty salons to ensure high rates of participation of noncitizens (comprising 27% of pilot-study samples at these sites). Parents were eligible for study participation if they had a child without health insurance coverage for at least 6 months (unless the child was an infant who had never been insured). Because the ideal size of a focus group is considered to be 4–8 participants,9 we recruited 8 consecutive parents of uninsured children for each focus group. Six focus groups were conducted to obtain a diversity of perspectives from each of the 2 communities, with the goal of a minimum of 12 participants (averaging 4 per focus group) from each community. We initially attempted to match focus-group participants by Latino subgroups, but abandoned this effort when it was found to interfere with coordinating convenient meeting times for participants. All focus groups were held in a conference room at Boston Medical Center at times and dates agreed upon as mutually convenient by all participants. Informed consent was obtained from each participant, and the study protocol was approved by the Institutional Review Board of Boston Medical Center. Each participating family was provided with free trans-

portation to and from the focus-group site, on-site daycare, and a $100 honorarium for participation. Focus groups averaged 2 hours in duration. After the focus groups, parents completed health insurance applications for their children with assistance from representatives of Medicaid (MassHealth in Massachusetts) and the Children’s Medical Security Plan (CMSP, which insures nonMedicaid eligible children in Massachusetts, including noncitizens12). Massachusetts has a combination type of SCHIP program13 consisting of both Medicaid expansion and a separate program (CMSP) for those not eligible for Medicaid. Thus, all Massachusetts low-income children are eligible for some form of health insurance. Table 1 summarizes MassHealth and CMSP features relevant to this study. Seven questions and 18 probes were asked in each focus group by a trained bilingual Latina research assistant (Table 2). Questions and probes were derived from a community study of 1100 children and their families10 and from a national Kaiser Commission survey.14 Data Analysis Each focus group was audiotaped and then transcribed by a professional bilingual transcriptionist unaware of the study aim. To ensure accuracy of the final transcripts, the second author (M.A.) simultaneously reviewed the audiotape and transcript of each focus group at least 3 times. Two authors (G.F. and V.B.) independently reviewed final transcripts, one of whom (V.B.) initially was unaware of the study aim. Transcript-based analysis was used to examine the data,15,16 with highlighting and margin coding of relevant themes. To validate thematic coding, each reviewer analyzed transcripts independently and then met to

Table 2. Questions Asked in Focus Groups of Parents of Uninsured Latino Children 1) 2) 3) 4) 5) 6) 7)

What problems have you had in trying to get health insurance for your child? What have you found to be confusing about getting health insurance for your child? What makes a child eligible for health insurance like MassHealth and the Children’s Medical Security Plan (CMSP)? What would make a child not eligible for health insurance? What hassles have you experienced in trying to get health insurance for your child? Are there any other problems in getting insurance for your child that you’d like to talk about that we haven’t discussed yet? Let’s say right now we gave you a case manager, a person free of charge whose job would be to help you to get insurance for your child. What things could the case manager do that would be helpful in getting your child insured?

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Table 3. Selected Sociodemographic Characteristics of Focus Group Parents (N 5 30) and Their Uninsured Children (N 5 48) Characteristic Mean parent’s age in years (6SD) Mean child’s age in years (6SD) Parent married and lives with spouse

Finding 38.8 (612.3) 11.9 (64.7) 33%

Parental ethnicity Dominican Salvadorian Colombian Puerto Rican Mexican Guatemalan

27% 27% 23% 17% 3% 3%

Parent’s highest level of educational attainment Not a high school graduate High school graduate College degree Median combined annual family income (range) $9120 Proportion with income below federal poverty threshold Parental citizenship* US citizen No documentation Green card Work permit Temporary visa Refugee

63% 27% 10%

old. One third of parents were married and living with their spouse, about two thirds never graduated high school, one third were US citizens, and about one quarter were undocumented immigrants. The ethnicity of parents most often was Dominican, Salvadorian, Colombian, or Puerto Rican, with the remainder consisting of small proportions of Mexican or Guatemalan ethnicity. Given these sociodemographic characteristics, two thirds of the children of participating parents would be eligible for CMSP, and almost all US citizen children were MassHealth eligible. Barriers to Insuring Uninsured Children Parents reported a variety of problems in trying to insure uninsured children. Table 4 depicts the taxonomy that classifies the 52 problems cited by parents into 11 categories.

($0–38 400)

Lack of Knowledge 87% 33% 23% 17% 20% 3% 3%

*Proportions sum to ,100% due to rounding.

resolve any differences by consensus. Themes common to all focus groups were then identified and recorded. Because the customary primary aim of focus-group methodology is qualitative theme identification, it is not considered appropriate to report frequencies or percentages of specific themes or item responses,9 and thus theme/response frequencies and percentages are not reported herein. Thematic analysis was performed using grounded theory, in which new theory was generated from the data, and appropriate existing theory modified or refined by comparison with incoming information.17–19 Finally, a taxonomy of themes was created to reflect the range of major obstacles to insuring uninsured children and how case managers could be helpful in obtaining insurance. For 1 focus group, we compared transcript-based thematic analysis with an analysis using N6, a computer software package for qualitative data analysis.20 Because no differences were observed in results that emerged from the 2 analytic methods, only transcript-based thematic analysis was performed for the remaining focus groups. RESULTS Sociodemographics of Focus-Group Participants Of the initial 48 parents agreeing to take part in the 6 focus groups, 30 attended and participated in their assigned focus group. The mean age of the parents was 39 years, and of their children (N 5 48), 12 years (Table 3). The median family income was $9120, with 87% of families with incomes at or below the federal poverty thresh-

There was a lack of knowledge among parents about multiple aspects of eligibility for children’s insurance programs, with several instances of contradictory beliefs. Some participants stated that parents must be employed for children to qualify for health insurance, whereas others maintained that parents must be unemployed (neither is required by MassHealth or CMSP). Misunderstanding about employment may in part be due to income verification requirements, as one parent explained: ‘‘You have to be working because supposedly you have to have paycheck stubs to apply for insurance.’’ On the other hand, 1 mother stated that you should be unemployed, ‘‘. . . because those that don’t work get more assistance than those that do work,’’ and another said ‘‘There are 2 conditions: either you work, or you get insurance for your children.’’ In addition, a mother responded, ‘‘Many women don’t work because they are afraid of losing all of the benefits that they have for their children.’’ Similarly, some parents said one must receive welfare benefits to obtain insurance for children, while others said you cannot be on welfare (Table 5). Many parents said either the parent or child must be a legal resident for the child to obtain insurance, but neither is true in CMSP. One mother reported that she experienced problems insuring her daughter simply because the girl was getting older. Multiple parents cited the child or the parents not having a social security number (which is not required by CMSP) or other forms of identification, including proof of an address. There was much confusion and misinformation regarding the annual combined family income cutoff to qualify for MassHealth and CMSP. None of the 30 participants correctly identified the correct cutoff, which is 200% of the federal poverty threshold for a family of 4 with 2 children (equivalent to $35 920 when the focus groups were held in 200121). Although the closest estimate ($39 000) exceeded the correct income threshold by several thousand dollars, all other estimates substantially underestimated the cutoff, ranging from $5200 per year to $30 000 per year. One mother believed that her child could not obtain health in-

AMBULATORY PEDIATRICS Table 4. Taxonomy of Barriers to Insuring Uninsured Children, as Reported by Their Parents Lack of knowledge Parent must/must not be employed Parent must/must not be on welfare Parent must be legal resident Child must be legal resident Child too old No social security number No identification Incorrect minimum or maximum income cut-off Legal custody not enough—must be biological parent Illness/need for medical care qualifies child for insurance Living in United States qualifies child for insurance Being a child qualifies child for insurance Inability to pay for child’s medical care qualifies child for insurance Child must be in school Unsure if child’s insurance suspended or valid Don’t know Failed to apply Never applied Language barrier I don’t speak English Immigration status Lack of documentation (social security number) Income Primary caretaker earns too much Spouse earns too much Income verification No pay stubs due to unemployment Pay stubs not accurate because parent worked overtime Pay stubs not sequential Pay stubs not recent enough Misinformation from insurance representatives Employment required Insurance too expensive Pay stub cannot exceed $100 per week Must choose between insuring children or spouse Parent told child insured but insurance card invalid System problems Application submitted but parent told it was never received Paperwork not completed by insurance representatives Discrimination by representatives because of Latino ethnicity Discrimination by representatives against immigrants Inefficiency/stalling: perceptions of ‘‘being given the runaround’’/‘‘ending up with nothing’’ System rewards families who lie about income and employment Cancelled child’s insurance without explanation Inappropriately discontinued insurance because of parental unemployment Hassles Request too much information/ask too many questions They ask for too much documentation Not having legal documents (for citizenship) Not accepting proof of address Social security number not accepted Paperwork Takes too long to apply or get decision Must apply multiple times No response after completing application and telephoning multiple times Always being rejected All of the requirements are barriers I no longer had the courage Decision still pending Applied and still waiting Mobility Moved and then returned, but no insurance since returning

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surance because the child’s grandmother earned too much, at $20 800 per year. Another theme was that the cutoff was not realistically linked to the income necessary to meet basic family needs; as 1 mother put it: How do you do it? How do you survive to be able to pay the rent? To pay the bills? And support your family? It is difficult. It is super difficult. No one knows how we survive. Imagine how we can afford insurance. Several other parental misconceptions were revealed. A grandmother with legal custody did not apply for insurance for her granddaughter because the grandmother believed that only biological parents could apply for insurance. Multiple parents incorrectly believed that children are eligible for health insurance simply by being a child, needing medical care, being ill, living in the United States, or parents’ inability to pay for the child’s medical care. Some parents mistakenly stated that the child had to be attending school to obtain insurance. Multiple parents reported not knowing why they could not insure their children, what makes a child eligible for insurance, and whether parents must be employed to insure their children. One mother described her uninsured daughter’s situation: ‘‘I don’t know why it has been a problem, because she had it [insurance] before, and now it has become difficult for her.’’ A related theme is uncertainty about whether a child’s health insurance currently is valid or was suspended. Failure to Apply Several parents admitted that they had never applied for insurance for their children. In 1 case, a mother had never applied for Medicaid coverage for her child in the 13 years since her daughter’s birth. Language Barriers Language barriers were cited as impediments to insuring uninsured children (Table 5). Parents specifically identified not speaking English and not having information in Spanish. As 1 mother described, ‘‘Some people get upset because we don’t speak English.’’ Immigration Status Parents’ immigration status was cited as a barrier to insuring uninsured children, in that documentation required to file the insurance application, such as a social security number, was not available (Table 5). One mother said: ‘‘Since we don’t really have legal documentation, it is very difficult and we are faced with too many obstacles.’’ Income Several parents cited earning too much or their spouse earning too much as barriers to insuring children. There, again, was a general expression of the system being unfair because it seems to reward those working part-time or not at all with children’s health insurance, welfare, and subsidized housing, but seems to penalize full-time workers because their earnings disqualify them for such benefits,

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Table 5. Focus Group Quotes on Selected Key Issues by Parents of Uninsured Latino Children Lack of knowledge: confusion about welfare Mother 1: ‘‘Of course [you need to be on welfare]. Not only to get health insurance for children, but you have priority for everything if you have welfare. For any type of assistance.’’ Mother 2: ‘‘Yes. I have many friends who don’t work and have everything. And I tell them ‘you have better luck than someone who works.’ ’’ Language barriers ‘‘I have had more problems . . . with the language [English]. I think what is necessary is . . . a place where a person can get oriented, or more pamphlets in Spanish.’’ Immigration status ‘‘I only applied once [for my child]. The representative told me you must bring your proof of residency, your social security card, a couple of bills to photocopy and attach to your application. But I had none of that. I mean, I did have the bills, but my legal status did not permit me to present valid residency papers [and] a social security card. So I threw away the possibility [of applying for insurance for my child] because . . . she [the representative] told me if you don’t have your papers in order, it is stupid to do it.’’ Income verification: pay stubs not accurate because parent worked overtime ‘‘Let’s say that my boss asks me to work 2 more hours on my shift, as I did yesterday. So that pay stub will be higher than usual. You know what I mean? And they may refuse to give [my child] MassHealth because of that.’’ Misinformation from insurance representatives: parent told child insured, but insurance card invalid ‘‘They said that they had sent a copy [of the insurance card], but it never arrived. Because of this I brought my children to the clinic. My son was sick, and they told me that the insurance card was useless. And today I received a bill for almost $800.’’ System problems ‘‘I have 5 children, and I delivered one 4 months ago. When I brought my child into the clinic for an ear infection, they told me that my [child’s] insurance was cancelled, but they didn’t receive my reapplication. So I brought the form to the [insurance representative] at the clinic. I brought him copies of my checks and everything else, so when they sent me the letter saying they were going to cancel my insurance on that date, I wasn’t worried, because I had already submitted the form. But after that date passed, when I went to the clinic, they said ‘you don’t have insurance.’ And I said, ‘I sent in the application and everything else;’ they said ‘We didn’t receive anything.’ I told this to the lady . . . who made me copies of all of the papers. She said, ‘Yes, yes, I witnessed that you sent him all of the papers, but you have to do it again and send everything again.’ But meanwhile, how can I pay that? I have to buy medicines for my son with the ear infection. Two prescriptions at $30 each, and I have 5 children. . . .’’ System problems: discrimination by representatives against immigrants Mother 1: ‘‘Because we are immigrants, they always want to give us less. They don’t want to give us anything.’’ Mother 2: ‘‘I did not like it at all, because they were discriminating against me. Because she told me that if you do not have your immigration papers, you can’t apply here. And I felt so bad because we are all human beings, and there is no reason why they have to do this to us. And she said, if you don’t bring in a paper saying you are legal in this country, you can’t apply for this [insurance for your child].’’ System problems: inefficiency/stalling ‘‘They don’t complete the paperwork. When you call on the phone there’s so much confusion, and then they transfer you from one place to another on the phone, and you don’t get anything. And you realize you don’t have anything, nothing, and they haven’t helped you at all.’’ Hassles: requesting too much information Mother 1: ‘‘It is as if you were joining the FBI [group laughs]. Yes! You feel like you were applying for federal employment, because they ask you for many, many, many, many things. You bring in the things, and they turn around and call you again, and say ‘We need this, and this other stuff, and another thing. . . .’’ Mother 2: ‘‘That frustrates parents, and they decide to not get anything [for their child], even though, deep inside, they need the insurance.’’ Hassles: takes too long to apply or get a decision ‘‘Yes, because that’s what happened to me. . . . When I applied they said they didn’t receive the application that I faxed to them, and so I had to wait again, and send the application in all over again. And I had to wait again for them to send me a response to see if I got insurance [for my child] or not. It took way more than 2 months to get a yes or no answer.’’

even though their income is insufficient to make ends meet. As one mother stated, ‘‘I have friends who work only part-time and they have it all. They pay only $200 [in rent] and live better than we do.’’ Income Verification Income verification is a major obstacle, particularly requirements to produce paycheck stubs (Table 5). One mother explained: ‘‘They ask me for a paycheck stub. I wasn’t working at the time. They told me to wait until I

started working.’’ Several parents complained about required sequential pay stubs. As 2 mothers related: Mother 1: ‘‘They have to be in sequence. If not, they will not accept them.’’ Mother 2: ‘‘In other words, they [all] have to be from the last 2 months.’’ An additional barrier is requiring recent pay stubs. ‘‘When you bring in the pay stubs, they say they have to

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be recent,’’ a mother explained. ‘‘If they are from last month, they won’t accept them.’’ Misinformation From Insurance Representatives Misinformation from insurance representatives can be a major obstacle to insuring uninsured children (Table 5). A mother was told she had to wait until she was employed to apply for insurance for her child, but employment is not a prerequisite. Another mother was told not to apply for insurance for her child because it costs too much: ‘‘Then [the insurance representative] said ‘no.’ That insurance is too expensive.’’ Although the state annual income cut-off to qualify for CMSP or MassHealth is $35 920, 1 mother related how she was told she had to earn less than $5200 per year (less than $100 weekly): ‘‘I was told that I had to bring in a pay stub for less than $100. I told the people that I can’t earn less than $100.’’ A mother described how an insurance representative forced her to choose between insuring her husband or her children: ‘‘For example, I wanted to include my husband on my insurance, but they told me that if I include him, they would drop the insurance for my kids.’’ System Problems Parents reported many system problems that impede insuring uninsured children. Mothers reported submitting applications for their children but being told the applications were never received, and insurance representatives losing paperwork, even when it was hand delivered (Table 5). Discrimination on the basis of Latino ethnicity was reported. As 1 mother put it, ‘‘For those who aspire for a better job, they see that you are Hispanic, and the first thing that they do is ask for the papers and discriminate against you.’’ Another mother stated: ‘‘Many times we find people who discriminate too much, and this is the problem, not the specific hospital or clinic rules, but many people who are busy working cause a lot of problems.’’ A third mother added: ‘‘I don’t know if it’s because we are Hispanic. I don’t know why, because we are all equal.’’ Discrimination against immigrants also was noted (Table 5). Inefficiency and stalling were cited by parents as major system problems (Table 5). As 1 mother described: ‘‘I called, and called, and filled out the application. . . . They sent me another letter. But I filled out the application, and nothing happened. Not even 1 of my children [was insured].’’ Some parents stated that the system seems to reward families who are untruthful about their income and employment. As two mothers related: Mother 1: ‘‘There are many people who lie, who work, and they give them everything.’’ Mother 2: ‘‘Or they say that they are making less than what they really earn.’’ Additional system problems included cancellation of a child’s insurance without any explanation and inappropriate cancellation of a child’s insurance because the mother became unemployed.

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Hassles Parents reported a wide variety of hassles in trying to obtain health insurance for uninsured children. A major obstacle was requesting too much information/being asked too many questions (Table 5). One mother stated, ‘‘Yes, they did ask me [too many questions]. I said to myself, ‘I did not steal her.’ ’’ Another hassle was being asked for too much documentation. As 1 mother put it, ‘‘What you do not have is what they are going to ask for.’’ Many parents reported not having citizenship documents as a substantial hassle. One mother stated, ‘‘A difficulty for all of us here has been immigration status, because wherever we go, the first thing they ask for is our documentation.’’ Another added, ‘‘They include requirements that are for legal residents, and automatically, if you aren’t a legal resident, there are spaces on the [insurance] application that you will leave blank. And for that reason, those are obstacles to obtaining insurance.’’ Additional hassles included being told that proof of address and social security numbers were unacceptable. Some parents felt hassled by the amount of paperwork required to apply for insurance, while others did not. Many parents reported that it took too long to apply for or get a decision (Table 5) on their child’s insurance (although some parents did not find the wait for either to be a hassle). Other reported hassles included applying multiple times, getting no response after completing applications and telephoning multiple times, and simply always being rejected. As 1 mother described: ‘‘They always reject you. Sometimes they mistreat you because we are Hispanic, because we go there to apply for insurance.’’ A mother stated that the requirements themselves are a hassle: ‘‘I basically feel that all of the requirements that they request are the barrier that stops people from insuring their children.’’ Another mother described the cumulative impact of dealing with the many hassles: ‘‘I no longer had the courage to go with my daughter. I no longer had the courage to go to any hospital [with her].’’ Pending Decisions and Mobility Parents reported 2 additional barriers to insuring uninsured children: still waiting for a decision after filing completed applications and moving to another state, then moving back, but being unable to insure the child since the last move. How a Case Manager Might Be Helpful in Insuring Uninsured Children Parents universally agreed that it would be helpful to have a case manager to assist with insuring uninsured children. One father responded, ‘‘I think it is the best thing that can happen, a person who can guide people who have absolutely nothing.’’ Parents explained that case managers could help with each of the 11 categories of barriers to insuring uninsured children (Table 4). Parents stated that case managers could assist with lack of knowledge, such as by answering questions, explaining eligibility rules, and providing information and more ideas. Parents also said that case managers could assist those who failed to apply

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for insurance for their children by helping to obtain and complete applications. As 1 mother stated, ‘‘It would be easier for us this way because we don’t even know what to answer [on the applications]. We don’t understand the questions.’’ Parents agreed that case managers would be particularly useful in overcoming language barriers, providing guidance, helping to contact insurance representatives, and serving as liaisons with insurance organizations, all of which would address multiple categories of insurance barriers. Parents added that case managers would eliminate hassles in applying for insurance for children by making the process ‘‘faster’’ and ‘‘easier.’’ DISCUSSION

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lion] are LEP25), substantial progress in insuring uninsured Latino children may only occur with greater availability of Spanish-language pamphlets, posters, applications, and other outreach materials, increased use of Spanish-language media campaigns, and more bilingual insurance representatives. Current Massachusetts education and outreach strategies may be too passive and appear inadequate; they consist of such measures as a bilingual tollfree telephone number, some advertising in the Spanish media, and various Spanish-language materials.26 Greater involvement of pediatric healthcare providers and approaches in other states, such as California,27 may also improve education and outreach for Latino families with uninsured children.

Implications for Educating Parents This is the first published study to our knowledge to use focus groups to identify barriers to insuring uninsured Latino children. The study findings indicate that lack of knowledge about insurance programs and their eligibility requirements can be a major impediment for parents trying to insure uninsured children, with 16 categories of parental lack of knowledge identified (Table 4). Extensive misunderstandings, misinformation, and failures to apply for insurance indicate that parents would greatly benefit from greater educational efforts on the part of Medicaid and SCHIP. Such efforts might include greater availability of pamphlets, handouts, and posters at clinics, health centers, schools, malls, and stores; more public service announcements; and greater use of media and billboard campaigns. Because multiple parents reported never applying for insurance for their child or giving up after their child was rejected for insurance 1 or more times, educational efforts also might be specifically targeted at these populations. Language Barriers Parents with limited English proficiency (LEP) cited language barriers as particularly potent impediments to insuring their uninsured children. Similar findings have been reported in studies of the parents of Latino uninsured children, both nationally22,23 and in Massachusetts.24 In a national survey of parents of uninsured Medicaid-eligible children,22 half of the parents completing the Spanish surveys said they had not applied for Medicaid for their uninsured children because they did not believe information or forms would be available in Spanish. In an analysis of the National Survey of America’s Families, noncitizen Latino children in Spanish-speaking families were 4 times more likely to be uninsured than white children in citizen families.23 In a survey of Massachusetts parents of children enrolled in a state health insurance program, parents speaking a language other than English at home were twice as likely to report that not knowing how to sign up for insurance was a barrier to their child’s Medicaid enrollment and 23% cited unavailability of forms in their language as a Medicaid enrollment barrier.24 Because Latino children are the most uninsured racial/ethnic group of US children and many Latino parents are LEP (49% of Spanish-speaking people in the United States [13.8 mil-

Insurance Representatives and System Problems Even when uninsured children clearly meet all eligibility requirements, their parents may be unable to obtain insurance coverage because of misinformation from insurance representatives. Parents reported insurance representatives mistakenly not allowing insurance applications to be submitted for uninsured children because the representatives incorrectly told parents that employment was required, insurance was too expensive, parents earned too much, one must choose between insuring a spouse or children, and that an invalid insurance card was valid. Such inaccuracies suggest better training and monitoring of insurance representatives might lead to more eligible uninsured children obtaining insurance coverage. Parents identified multiple system problems that impede insuring uninsured children. These findings can be viewed as an instructive list of weaknesses and quality deficiencies that can occur in state programs for insuring children but that are easily remedied. System inefficiencies cited by parents include loss of families’ completed applications, failure of insurance representatives to complete needed paperwork, perceptions of being ‘‘given the runaround,’’ inappropriate insurance termination, and cancellation of coverage without explanation. Such problems might be alleviated using approaches such as rapid cycle change and collaborative improvement models,28,29 which focus on improving care based on what is already known using collaborative work groups within or across systems or institutions. Parents’ reports of discrimination based on ethnicity and immigration status indicate a system that is not sufficiently culturally sensitive and responsive; such a system might consider integrating cultural competency into the training of insurance representatives. In addition, parents often expressed frustration with the perceived unfairness of the system, citing perceptions that those who work and are honest about finances are ultimately penalized, whereas those who are unemployed and untruthful seemed to be rewarded. Such perceptions might best be addressed by having insurance representatives provide specific feedback regarding final coverage decisions; identification of the precise reasons for a decision would provide families with opportunities to understand rules and regulations and take corrective action whenever possible. Multiple parents criticized the income cut-off as being un-

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reasonable, stating that families whose income falls above the threshold have great difficulty meeting their basic needs and paying for children’s health insurance. Such comments suggest states might consider revisiting what constitutes a reasonable income cut-off for low-income working families. In an era when fiscal constraints and deficit spending loom large for states, however, politicians, the public, and states may view financial challenges as considerable disincentives to insuring all eligible uninsured children. Hassles and Potential Solutions Parents describe a daunting list of 12 hassles that individually and in concert can thwart families from insuring their eligible uninsured children. Frustrated families reported giving up the pursuit of coverage for their uninsured children after confronting such hassles as requests for too much information and documentation, lack of acceptance of requested documentation, excessive paperwork, long waits to get decisions, having to apply multiple times, and simply getting no response after an arduous application process. Because families identify these hassles as major barriers to insuring uninsured children, it would seem prudent for states to consider means of simplifying and expediting the coverage process. Our study findings and previous work in other states suggest express-lane eligibility strategies, such as streamlined applications, presumptive eligibility, and links and a shared application with other public programs (including the school-lunch program, food stamps, Temporary Assistance for Needy Families, and the Women, Infants, and Children program) have the potential to increase the number of low-income children with health insurance.27,30,31 We are not aware of any efforts by Massachusetts to simplify the application process for MassHealth or CMSP, but the study results indicate that parents of uninsured Latino children would welcome and benefit from such simplifications. A simplified application process might especially benefit children disenrolled from but still eligible for MassHealth and CMSP, given recent research revealing re-enrollment of children in SCHIP is impeded when parents experience problems with the application process.32 Limitations Certain study limitations should be noted. Focus-group participants were Latinos from the Greater Boston area; although multiple Latino subgroups were represented, including families of Mexican, Caribbean, Central American, and South American ancestry, not all Latino subgroups were included. The study findings also may not necessarily apply to parents of Latino children from other regions of the country or nonurban areas. Additional research is warranted to compare and contrast these study findings with those that would result from focus groups of parents of uninsured children from other racial/ethnic groups. Massachusetts is a state where potentially all lowincome uninsured children (including noncitizens) are eligible for insurance, so the study findings may not necessarily be comparable with results from focus groups of

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parents of uninsured children in states that have different insurance programs. Finally, although participants were asked about case managers, they were not asked about other potential solutions and interventions for insuring uninsured children. Conclusions The study results indicate that, even in a state where all children are eligible for health insurance, current Medicaid and SCHIP outreach and enrollment efforts are not effectively reaching Latinos, the most uninsured racial/ ethnic group of children. Parents lack basic knowledge about available insurance programs, their eligibility rules, and the application process. Numerous barriers faced by study parents trying to insure uninsured children—including language and immigration issues, income verification, misinformation from insurance representatives, system impediments, hassles, pending decisions, and family mobility—suggest the need for a more efficient, user-friendly system. Study parents universally approved of case managers, and evaluation of such alternative outreach strategies are urgently needed because millions of American children continue to have no health insurance. ACKNOWLEDGMENTS This work was supported by grants from the Minority Medical Faculty Development Program and Generalist Physician Faculty Scholars Program of the Robert Wood Johnson Foundation, an Independent Scientist (K02) Award from the Agency for Healthcare Research and Quality, and a Hispanic Health Services Researcher award from the Centers for Medicare and Medicaid Services.

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