HUSKY Focus Groups - What Parents Are Saying

FINDINGS

Enhancing HUSKY enrollment is a complex undertaking. Enrollment barriers identified in the focus groups fall into four general areas -- lack of information, suspicion and stigma of public programs, cultural barriers, and enrollment problems. Parents universally appreciated the importance of health care coverage for their children. Families who had enrolled in HUSKY were generally very pleased with the services, the benefit package and the cost. All felt that coverage for uninsured children is badly needed, and "about time" as one parent put it. Many of these findings are similar to results of focus groups held in other states.

Parents generally liked the brochure and application. The brochure was informative and distinct from most public programs. The application was seen as reasonable. Parents had many suggestions for improving HUSKY outreach and public education. Participants also noted their preferred media outlets (Appendix A).

HEALTH COVERAGE FOR CHILDREN IS A MAJOR CONCERN

It has been suggested that parents are not signing children up for HUSKY because they do not recognize the importance of health care in a child's growth and development. This was not true among the focus group parents. On the contrary, health care coverage for their children was extremely important. "Your insurance card is gold."

Several families are paying very large premiums and copays for minimal coverage. A few stated that one parent's entire income goes to pay for health care; "I feel like I am only working for the insurance." For many, going without coverage is not an option; whatever it costs they will pay. One family stated that they spend over $600 per month for coverage; their total income is just over $26,000 per year. Another family with five children talked about only being able to cover some of them.

Other families who were not able to afford coverage talked about constant anxiety over their children's health. Some are forced to do without health care services that their children need, particularly dental care. Many restricted their children's activities because they are not insured - no swimming, no bike riding, no football. Others worry about getting the required physicals for school attendance.

Families are facing significant financial distress because of relatively moderate medical bills. One woman has a child who needs dental work; her insurance pays part of the bill but her cost will be $3869. Because she has delayed, the problem is getting worse. The same mother has another child who was born with a hand deformity. He received surgery at birth, which was paid for by insurance, but he needs another surgery and the company will not pay for it. The mother in this family is still paying a $5000 bill for her own surgery for gallstones, but she is behind in the payments.

A parent who runs a small business with her husband had a child with chronic ear infections who needed tubes costing $1500. "I had to go around to 20 doctors, literally crying and begging for my son. Because I didn't have insurance - they wanted the money up front. I didn't have it."

Another participant spoke of an injury her daughter had last year. The bill was $700; it is a great struggle to make the payments. She gets no benefits with her part-time job.

One woman said that she was rushed out of the hospital after giving birth because she was uninsured. During her stay, she was asked numerous times about how she would pay her bill and one person suggested that she sell her car.

Another participant's son fell off his bike three years ago. She delayed as long as possible, but finally took him to the emergency room for treatment. He needed three stitches, it cost the family $500, and they still have not paid off that bill.

One family was a "victim of the Suburban disaster". While their employer switched them to another health plan, many bills are not being paid. "People are suing us left and right. The doctor doesn't want to see us walk in the door."

Participants noted significant health bills including $2500, $6000 and a serious car accident that totaled $80,000. Many talked about small bills that added up - X-rays, dental services, asthma attacks, prescriptions, hearing aids and glasses were commonly cited.

Many parents felt that privately insured children get more attention and faster care from providers. "The first question they ask is if you have insurance. If you say no - they look at you different and you have to wait. That time is precious when your child is sick." "They laugh at you on the phone" if you are uninsured, "they want to hang up." One felt that when you are uninsured, doctors are more likely to say "let's wait and see what happens." One father changed where he took his family for care because of this issue.

While it was not a question, at every focus group issues arose concerning health coverage for adults. While no parents indicated any intention not to enroll children in HUSKY because parents were not included, it was a clear need for virtually every participant. At one group, a seventeen-year-old girl came looking for coverage for herself. She was excited when she learned that she was eligible but seemed disheartened when she learned that the coverage would only last until she turned 19. Some of the financial pressures on these families are the result of parents' health care bills. These pressures affect the entire family and require sacrifices that are shared by all.

PARENTS ARE VERY POSITIVE ABOUT THE HUSKY PROGRAM

Participants became very enthusiastic about the program as they learned about it. One stated that it's something that's "time has come for kids in this state - a lot go without [because] they can't afford it." They were pleasantly surprised at the low costs and the comprehensive benefit package. The costs were lower and the benefits much better than they have been offered through employers. One parent characterized the maximum $50 per month premium as "awesome." Most felt that this program will have a major impact on their lives.

Parents were so enthusiastic about the program by the end of two groups that several offered to go back to their communities and talk about HUSKY. One father asked for a card from DSS to schedule speakers for several community groups that he belongs to. At the end of another group, we were asked to send everyone who attended a stack of brochures to give to family and friends. During one group, there was great anticipation to get the application after seeing the brochure. In all groups, there was an appreciation of being asked for their opinion; this seems to be a new experience for them.

LACK OF INFORMATION ABOUT HUSKY

According to focus group participants, by far the most common answer to the question of why families are not signing up their children for HUSKY was that people are still learning about it. The word is not out to everyone. Many participants didn't know anything about the program until the focus group. Several others gave answers so vague about what they had heard, that it is likely they were being polite or were embarrassed to say that they had heard nothing. Some were very straightforward in saying that the state and its outreach partners are not doing enough to publicize the program. "Where have the brochures been? I've been trying to find out about HUSKY."

Several had heard about the program from diverse media sources, but either didn't pay attention or didn't understand that the program could help their families. Many parents who did know about HUSKY learned about it from a neighbor, friend, health care or child care provider. A few had heard of it at a presentation.

Misinformation is common, especially the myth that HUSKY is not available for working families. Many assumed that only families on cash assistance are eligible for HUSKY. Virtually no participants knew what services are covered, including many who are enrolled in HUSKY.

Another source of confusion and misinformation became apparent at the Stratford group. Some participants thought that HUSKY was a health plan or an HMO. There was pleasant surprise when they learned that, once enrolled in HUSKY, they would have a choice of health plans; this was a new experience for most.

This phenomenon is not unique to Connecticut.

THE STIGMA AND SUSPICION OF PUBLIC COVERAGE IS A BARRIER FOR SOME FAMILIES

While only one parent admitted that she had declined coverage for her children when she learned that (for her family) HUSKY was Medicaid, it was clearly a source of discomfort for other parents who did sign up or said that they would.

One exchange illustrates the power of the stigma. A couple arrived early for one group and was given the questionnaire to fill out while other parents arrived. An animated conversation developed between them and the facilitator approached to see if they had questions. The mother clearly wanted to stay for the group and hear more about HUSKY. She stated that they were paying "a lot" to cover their children and she hoped that HUSKY might offer some relief. The father however, was very anxious to leave; he said over and over to the woman "Come on . . . this is not for us." At one point she offered to stay and he could leave; he told her she would have to walk home. She left.

Participants who knew about HUSKY associated it with Medicaid, in a negative association. Some learned that HUSKY was Medicaid from providers who refused to accept HUSKY/Medicaid/Title XIX patients.

Several participants felt that the association with "welfare" creates the impression that the same rules of eligibility apply (e.g. income, assets) and that keeps people from applying. It was suggested in two groups that the marketing materials should emphasize that HUSKY is available to higher income families. One participant suggested that the income chart be on the cover of the brochure.

It is important to note, that none of these families identified themselves as low-income (although virtually all are) and would not respond to marketing with that phrase. They seemed to prefer "working families".

There were generally low expectations of public programs across groups and HUSKY suffers from this perception. In one group, a woman was asked how long it had taken to enroll in HUSKY. She stated that it took "only about a month," and the general consensus of the group was that that was good. When an observer noted that it shouldn't have taken that long, several stories of difficulty enrolling in HUSKY rolled into stories of difficulty enrolling in other public programs.

In every group there were questions about the difference between HUSKY Part A and B. Several participants knew that Part A was Medicaid. The attempt to make the differences between the two programs invisible to clients was not successful and perhaps never could be. However, a common point of entry, a common application and a common name are valuable in reducing confusion and facilitating the application process (see later).

Suspicion of HUSKY as a public program crossed groups and cultural lines. One Spanish-speaking group related suspicion that immigration may get involved if a family applies. (It is important to note that this group occurred before the recent public charge policy clarification. While they were not aware of that specific problem, it was clear that there was a more general suspicion of public programs.) In another group, a question was raised about whether participation in HUSKY could affect child custody proceedings.

CULTURAL BARRIERS WERE IMPORTANT FOR SOME POPULATIONS

The need for information in Spanish that is sensitive to Spanish-speaking clients was made clear in the two groups with Hispanic clients. In the Hartford group, none had seen the Spanish brochure, but they liked it very much. They emphasized the importance of being able to speak to someone who spoke their language, both on the phone and in person. A bi-lingual woman who spoke English well, accessed a Spanish speaking person on the HUSKY toll free line when she applied. She had a very positive experience in enrolling and credited that with the ability to talk to workers in Spanish. Several participants emphasized the importance of having bilingual HUSKY presenters for community groups. One Willimantic mother had attended a HUSKY presentation at her job, but because the presenter spoke only English, she did not understand the program and did not sign up.

Cultural sensitivity was also an undercurrent, though not explicitly stated, in the largely African-American group in Bridgeport. There were many comments that implied or explicitly stated that the reason people have not signed up for HUSKY is because the state has not "come to the community". Some at the group were very critical of the brochure, saying that it looked like "you are trying to sell me something." It was suggested that HUSKY use grassroots flyers that are more common in their community. An example of one for a local food pantry was offered as a model.

SOME CLIENTS ENCOUNTERED ENROLLMENT PROBLEMS

Enrollment experiences varied among those who had already applied for HUSKY. Some had no problem and were very positive about the process. In fact, several seemed to have been surprised that the process was so smooth. Several of those with positive stories emphasized that they had someone to ask questions in person. One noted that she didn't need help in applying, but was grateful that it was available if she needed it. Again, expectations were very low for a public program.

However, other participants encountered problems in enrolling that created a barrier. Most involved not getting enough information rather than incorrect information. One woman had applied five months before the group and had heard nothing. She had not followed up until a caseworker helped her; without that help she would not have enrolled. Another participant noted that she had to talk to several workers over several phone calls and give each the same information; again, without the help of an advocate she would not have completed her application. One stated that her income was miscalculated assuming continuous employment at a job she only held for two weeks. One application appears to have been delayed in moving between HUSKY Parts A and B, causing confusion for the client. Another was told that her child was covered by HUSKY, but later was told that she was not covered. After more calling, she was told that the second notice was an error, but she is unsure and worried.

It is important to note that despite the positive stories, the negative stories carried more weight in the conversations at the two groups with any problems. While this may be human nature, a negative reputation for HUSKY enrollment may create a barrier for some parents considering applying, particularly if it confirms a more generalized poor reputation of public programs.

PROVIDER ACCESS IS A SERIOUS PROBLEM IN SOME CASES

While not barriers to enrollment, limited access to providers in two areas were mentioned often and very strongly in the groups as barriers to accessing care. These issues were offered voluntarily by participants, and were not part of the study questions.

Difficulty accessing dental care was a common theme in all groups. This was true both for families without insurance and those on HUSKY. Several uninsured families identified dental costs as the highest medical bills they face. Many families had difficulty in finding a dental provider who would accept HUSKY. One father stated that a dentist told him that his children could be treated if he would agree to pay for the services himself. One uninsured family began dental treatment for a child, ran out of money, stopped treatment and the child's condition has deteriorated.

In Willimantic, access to all providers in HUSKY was cited as a serious problem. Several families in the group were new enrollees, and had to make many phone calls to find a provider. Waiting lists for appointments are long for the few providers who participate. Health plan freezes in that area are confusing and have exacerbated the problem of provider access. Participants stated that provider lists sent by health plans are sometimes inaccurate.

PARENTS GENERALLY LIKED THE BROCHURE AND APPLICATION

Most parents liked the brochure and application. The brochure was informative and answered all their questions. It was clearly different than those the participants are used to from public programs. In general, this was seen as positive, although in one group a subset of parents preferred a more "grassroots" flyer.

The four-page application was more difficult for Spanish speaking participants, but most parents felt the current form is reasonable. Most stated that they could fill it out by themselves, but would appreciate having someone in-person to ask questions. It was remarkable how low were parents' expectations of information and paperwork from public programs. The HUSKY program far exceeded these expectations.

CLIENTS HAD MANY IDEAS FOR OUTREACH AND MARKETING HUSKY

In answer to requests for suggestions in both the questionnaires and during the focus groups, participants were generous in sharing their ideas. Proposals in bold were mentioned numerous times over more than one group. It should be noted that some of these ideas are being implemented.

Word of mouth was the most often emphasized vehicle for getting information and, in fact, that is how most participants learned about the program.

Next: Methodology