Guide to Monitoring Medicaid Managed Care Chapter 1

A Guide to Monitoring Medicaid Managed Care

Chapter 1:
Do-It-Yourself Monitoring Projects
Community organizations can play a critical role in identifying problems in Medicaid managed care. This chapter describes a few ways that community organizations can collect their own data about managed care problems. The projects described-consumer surveys, focus groups, test calls, and visits-are by no means exhaustive. Groups can design projects that best fit their own needs and resources.
If your organization has strong ties to low-income consumers but lacks the staff and resources to undertake an in-depth monitoring project, you might hold a meeting with Medicaid managed care consumers to learn about their concerns. With just a little structuring, this kind of meeting can become a "focus group," and you can share the results with the media or use them to support recommendations on what should or should not be in Medicaid managed care contracts or regulations. If you have strong consumer ties as well as more resources, a more ambitious project is to interview families about their experiences in Medicaid managed care. If you have strong advocates in your coalition but not many consumer members, you might undertake a project to see how managed care policies are being implemented. For instance, if your coalition is concerned about access to health care, you could call the providers listed in a managed care directory to see how many are taking new patients.
For this kind of do-it-yourself research, your imagination is the limit. The research techniques that you use can also be an organizing tool to interest more people in your group and to involve consumers more directly in advocacy.
Focus Groups
A focus group is basically a small meeting in which six to ten consumers, guided by a facilitator, discuss their views on a given topic. The group participants usually have something in common-e.g., they all have special needs children in managed care, or they all come from a particular culture. Focus group meetings usually last about two hours. Researchers interested in the human impact of public policy find focus groups to be useful research tools. Usually several focus groups with different participants meet to discuss the same topic.
How to conduct a focus group:
Select a topic area. Prepare open-ended questions that will guide focus group participants to think through their experiences (or their family members' experiences) and opinions. For example, if you want to know about managed care generally, the questions might lead consumers to reflect chronologically on their managed care encounters-How did they enroll? Did they get information they needed to choose a plan? How did their care upon enrollment compare with their previous care? How did they locate doctors? Can they get to their doctor's office easily? How do they feel about their medical appointments? about their ability to get follow-up specialty care? about prescriptions? about any developmental services for their children? How were medical emergencies handled? What happens when they call member services for information or help? What happens to their care when they re-certify for Medicaid? How do they feel about managed care overall?
Pick a facilitator or team of facilitators who can draw consumers into the discussion, can listen well, and can probe the responses. You may be able to identify a staff member or a community person who is skillful at engaging people in discussion. Or, if you have money, you may be able to hire a professional facilitator.
Partner with organizations that can help bring consumers to the focus group.
Choose an accessible location. If you meet in a location where at least some of the participants are already gathered, such as a public housing project, getting people to come will be easier.
Consider hospitality and incentives for participants. Consumers' time is as valuable as professionals' time. If possible, pay participants stipends for participating in your focus group and provide transportation to the meeting, child care, and refreshments.
Decide who else should attend. Do you want the officials whose opinion you want to influence in the room, or will this inhibit discussion? Do you need resource people present to help answer participants' managed care questions, or would they dominate the discussion? Can you offer a referral or any other assistance to consumers currently experiencing problems?
Use a tape recorder and notetaker for the meeting.
Hold your focus group. Introduce everyone and the topic, explain what you will do with the information, explain how you will respect participants' confidentiality, and begin the discussion. Afterwards, if appropriate, invite participants to join your organization, and tell them how you will keep in touch about your findings and any changes that result from your advocacy.
Write your findings. Focus group reports often include a summary of the discussion including direct quotes from participants.
Disseminate your findings to policymakers and the public along with your policy recommendations.
You can find examples of professionally led focus group studies regarding Medicaid on the Henry J. Kaiser Family Foundation website. For example, Michael Perry and Neil Robertson, Individuals with Disabilities and Their Experiences with Medicaid Managed Care: Results from Focus Group Research (Menlo Park, CA: Henry J. Kaiser Family Foundation, July 1999.)

CASE STUDY:
WASHINGTON, D.C. Conducting a Focus Group

The Alliance for Fairness in Reforms to Medicaid (AFFIRM), a coalition in Washington, D.C., learned of a proposal to require children with Supplemental Security Income (SSI) to enroll in managed care plans. (Children can receive SSI if they have low family incomes and serious disabilities.) Previously, children in the District who received SSI could either enroll in a managed care plan specifically designed to serve their special needs or remain in fee-for-service Medicaid.

Advocacy groups knew about the District's proposal to require enrollment for SSI children, but families of these children did not. Advocacy groups also knew that many children with special needs had Medicaid but not SSI, and these children were already required to enroll in general managed care plans. AFFIRM decided to hold focus groups of families with special needs children-both those who had SSI and those who did not-to gather input on the District's proposal. To do this, AFFIRM partnered with groups that had direct ties to these families-a hospital mobile pediatric clinic that served public housing residents, the D.C. Office of Maternal and Child Health, and early intervention providers.

In three meetings, each with about eight families, AFFIRM asked detailed questions about the experiences of special needs children in both managed care and in fee-for-service Medicaid-e.g., why did the families choose to enroll in managed care or to stay in fee-for-service? What were children's experiences in seeing doctors and specialists, getting medicines and durable medical equipment, and accessing therapy? An official from the Medicaid office attended, primarily as a listener.

AFFIRM learned that families whose children were receiving SSI were pleased with care management services provided by the existing managed care plan for children with SSI and with its approvals of in-home therapy and home modifications. However, the families wanted more information about available services so that they would not have to rely solely on their caseworker to tell them about resources. Families had experienced problems in coordinating school-funded services with Medicaid services and problems with transportation to medical care. In contrast, other special needs children who did not have SSI often received no care management services, and their families reported a great deal of difficulty accessing specialists, medical equipment, and therapy in managed care plans serving the general Medicaid population.

AFFIRM used information from these focus groups to comment on consumer protections that should be included in Medicaid managed care contracts and to urge the District to expand care management services to other children with special needs. Following AFFIRM's example, the District Medicaid agency convened additional focus groups regarding its proposal.

(For more information contact Patricia Thompson, Executive Director, AFFIRM, 1334 G Street, NW, Washington, DC 20005, 202-626-0617.)

Consumer Surveys
Consumer surveys are a good way of documenting the prevalence of various managed care problems. Surveys can also be a good consumer-organizing tool. They can identify consumers with managed care concerns who may want to join a coalition. If Medicaid consumers themselves conduct the surveys or interviews, their effectiveness as consumer advocates will be enhanced by the knowledge they gain. To design a survey, you need to think through several issues:
What do you want to know? You may already have some general questions that you want to explore. Meetings with community organizations and discussions with consumers can help you identify additional issues to research through your survey. You can also look at interview questions developed by other Medicaid managed care researchers. The interview form used in Washington D.C.'s UPO Head Start survey (described in the box above) is reproduced in Appendix A. The Consumer Assessment of Health Plans, a managed care survey developed by health researchers for national use, is available on the web. Find out what consumer surveys are already conducted by your Medicaid agency or by the managed care plans in your area and what they have yielded. You might consider using a mix of multiple choice and open-ended questions. Multiple-choice questions lend themselves most easily to statistical analysis. Open-ended questions can provide more detailed information about problems, and you may be able to share the case histories that they produce with legislators or the media.
Who do you want to survey? Will you survey Medicaid consumers who are served by community organizations in your coalition? Will you go door-to-door surveying in a low-income neighborhood? Will you conduct surveys in Medicaid offices or in health care facilities? Will you ask schools or day care providers to distribute a written survey for you?
How will you conduct the survey? Face-to-face interviews are labor-intensive but can obtain responses from people who have no phones and are not likely to complete written surveys. Telephone surveys will miss transient people and others without phone service. Sometimes if you do not already have a relationship with the people you plan to survey, they may assume that phone surveyors are telemarketers. Written surveys are probably the easiest survey tool for organizations that can only devote limited resources to a survey project, but they have a low response rate and will not collect information about people with low literacy skills. Besides determining a survey method, you need to consider how you will reach people with limited English proficiency.

CASE STUDIES:
NEW YORK AND WASHINGTON, D.C. Surveying Consumers

In 1996, the Community Service Society of New York conducted 421 interviews with Medicaid beneficiaries in income-support centers to learn about their knowledge of managed care. They found that consumers did not "know the basic concepts of managed care." Consumers were unaware that they were limited to seeing only network doctors. Consumers did not know their plans' dispute resolution and complaints procedures. Many had not used their plans, and many reported barriers to access.

Community Service Society used the results to design a training curriculum and guide for Medicaid managed care consumers and urged the city to provide more managed care education. Eventually, the city funded the Community Service Society to operate an independent ombuds program for managed care consumers.

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In 1997, United Planning Organization's Head Start Program, Families USA, and AFFIRM formed a partnership in Washington, D.C. to monitor Medicaid managed care.

Twelve Head Start parents, themselves Medicaid managed care consumers, worked with the three organizations to develop an interview tool. Then the parents formed a monitoring team and interviewed 122 other Head Start parents about their families' experiences in Medicaid managed care. They found that enrollment in health plans frequently disrupted ongoing physician relationships. Many families had experienced long waits for doctor appointments and difficulties accessing urgent and emergency care. Parents did not know how to get behavioral health benefits, which were "carved out" of managed care. Fewer than half of the parents surveyed knew how to file complaints with health plans or to make Medicaid fair hearing requests.

Members of the monitoring team testified about their findings in City Council hearings. When the District moved from voluntary to mandatory managed care, the team was influential in improving enrollment procedures and managed care contract standards. The team has become a strong consumer voice and has continued to meet monthly for three years. Members provide outreach to the community about Medicaid managed care rights, gather managed care complaints and forward them to appropriate officials, and meet with Medicaid officials and health plan representatives to advocate for reforms.

Sources: C. Molnar, et al., Knowledge Gap: What Medicaid Beneficiaries Understand - and What They Don't - About Managed Care (NYC: Community Service Society, 1996), and information from Chris Molnar. For more information on the D.C. project, contact Theresa Shivers, UPO Head Start, 401 M Street, SW, Washington, D.C. 20024, 202-289-9100; or Cheryl Fish-Parcham

After you have drafted interview questions, test the survey tool with a small sample of respondents. After they finish the interview, talk with respondents about whether they understood the questions and the response choices as you intended them. If you want only one answer to a multiple-choice question, make sure the options are phrased as mutually exclusive choices. Find out how long it takes to complete the survey and shorten it if necessary. Since people are busy, they are unlikely to complete a very long survey. Outside reviewers can help you finalize your survey tool, and you may also be able to get help from social science or statistics students at a near-by university. These people will have suggestions on how to phrase the questions and answers and how to format the interview for easy coding. Consider sharing a draft with the policymakers whose opinion you hope to influence. This will help ensure that they take your results seriously and may prevent them from later questioning your methodology.
Decide who will be your interviewers and how you will compensate them. Do you want professional advocates to conduct the interview, probe responses, and educate consumers about how managed care is supposed to work? Do you want consumers to conduct the interviews because they can encourage their peers or because you are building a team of consumer advocates? Train the interviewers carefully so that they will all administer the survey the same way. Listen to them role-play interviews. The project coordinator should check with interviewers regularly about any questions they may have. After interviewers have done just a few surveys, it may be helpful to meet to quickly resolve any initial issues.
Decide how you will deal with confidentiality-should the project coordinator be able to follow up with respondents to clarify answers? How will you guarantee anonymity? Consider asking respondents whether they want to be contacted about ongoing coalition meetings or opportunities to raise issues publicly.
A letter of introduction from some trusted member of the community can help to legitimize interviewers and your study. An incentive, such as a nominal payment for the respondent, can help increase the response rate. Respondents will likely have questions about how managed care is supposed to work and about how to resolve some of the problems they face. You may want interviewers to distribute literature or offer suggestions at the end of the formal interview.
Once you have completed the survey, you will need to analyze the data. Whether you analyze the data you collect yourself or you have the help of someone with a statistical background will depend partly on how large the sample size is and what you intend to do with the data.
Compiling Case Stories and Investigating Complaints
Almost all groups, regardless of resources, can compile case stories or anecdotal information about managed care problems. Just by sharing the problems they encounter daily, organizations that are funded to provide consumer assistance play an essential role in educating the public about policies that need to be changed. Consumer assistance programs can provide statistics on the cases they handle and can share compelling case histories. Even organizations that are not funded to provide direct service can also collect stories by contacting direct service organizations for examples or gathering stories in community meetings. The important elements of a story collection project are documenting problems through case studies, determining what policies or procedures may be causing problems, and following up to share both the case examples and conclusions about policy problems with appropriate officials.
For more information about "story banking," see Families USA's The Art of Story Banking, July 1999. Two important caveats for story collecting must be observed:
1) The consumer must know what you will do with his/her story. The consumer needs to know whether you will share information with officials or community organizations or whether you will keep the story confidential. The consumer also needs to know whether you will assist him/her in resolving the problem.
2) While sharing the story with you is an informal way to obtain advocacy assistance, you should tell the consumer about official complaint resolution mechanisms, such as the right to make a formal complaint with the managed care plan and the right to file a Medicaid fair hearing request.

CASE STUDIES:
CALIFORNIA, TENNESSEE, AND WASHINGTON, D.C. Gathering Stories from Consumers

In 1996, many Los Angeles residents were assigned by default to Medicaid managed care plans that they had not chosen. Maternal and Child Health Access provided examples of pregnant women whose care was disrupted by the assignments. In some cases, the women had correctly completed enrollment forms showing that they were pregnant and intended to remain in fee-for-service, but they were still assigned to managed care plans. In other cases, women never received enrollment forms. Maternal and Child Health Access used the case histories to document the need for urgent disenrollment procedures that would restore fee-for-service care in just a few days.

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AFFIRM and UPO Head Start in Washington, D.C. use a "Medicaid Managed Care Experiences Form" to gather information about problems. Consumers may fill out the forms at community meetings, or members of a Head Start Medicaid Monitoring Team may record problems that they hear from their friends and neighbors. AFFIRM, UPO Head Start, and Families USA probe to find out what systematic problems are reflected in the complaints and pass their findings on to District officials for correction.

For example, several consumers received hospital bills although they had Medicaid coverage. On investigation, UPO Head Start learned that hospitals routinely billed consumers when managed care plans disputed emergency room charges, even though no one at the hospitals or in the managed care plans had told the consumers that their condition might not warrant emergency treatment. As a result of the groups' advocacy, the District's Medical Assistance Administration instructed hospitals and managed care plans that they cannot bill Medicaid beneficiaries for care unless they have informed consumers in advance that they do not need emergency care and the services will not be covered by Medicaid.

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When Tennessee expanded Medicaid and mandated managed care enrollment through the TennCare program, the Tennessee Health Care Campaign and Crisis Intervention Center, Inc. received state funding to operate an advocacy phone line, which they called the "TennCare Consumer Advocacy Program." The Advocacy Line works with both managed care plans and the TennCare Bureau to resolve problems. It compiles case statistics, categorized by the barriers to care experienced by callers and by callers' managed care plans. Its quarterly reports to the TennCare Bureau describe problems and the volume of calls associated with each problem. In its first year of operation, the Advocacy Line opened 2,721 cases. Tennessee Health Care Campaign's newsletter keeps community groups informed of advocacy strategies and policy developments.

Sources: Lynn Kersey, Maternal and Child Health Access, Los Angeles, CA; Pat Thompson, AFFIRM, and Theresa Shivers, United Planning Organization, Washington, D.C. TennCare Consumer Advocacy Program 1994 Annual Report, Nashville, TN.

Testing the System
Advocates and consumers can test many aspects of a managed care system to determine whether policies are working in practice. With regard to access, they can find out whether providers really have open practices, whether beneficiaries can schedule appointments within reasonable periods of time, whether interpreters and TDD equipment are available throughout the system, and whether provider offices are physically accessible to persons with disabilities. By calling member services, advocates and beneficiaries can find out whether plans promptly and correctly answer members' questions. With regard to enrollment, advocates and consumers can listen to marketing or enrollment presentations and call enrollment brokers to find out what counseling they provide. In states where enrollment brokers also field managed care "help line" calls, a consumer can lodge the complaint through the broker to see how well the help line assists with the problem and whether it reports problems to the state Medicaid agency. State Medicaid agencies and regional Health Care Financing Administration staff may similarly test managed care provider networks and enrollment practices as part of their monitoring strategy. 1
Occasionally, community organizations have health records that may help them monitor the quality of care provided by managed care plans. For example, Head Start programs, day care centers, and schools all require information about children's immunizations and health screening. Advocates may be able to work with these organizations to determine whether children covered by Medicaid receive the complete health screening they should under EPSDT. (See Chapter 5.)

CASE STUDIES:
OREGON AND PENNSYLVANIA Testing Access to Providers

Advocates in several states have tested the accessibility of managed care networks by examining provider directories and calling the providers who are listed. In 1994, Project Equality, an Oregon Health Action Campaign group led by Oregon Medicaid enrollees, phoned 40 doctors whose names were on Oregon's Medicaid managed care provider list and found that 34 would not accept new Medicaid patients. More recently, the Pennsylvania Health Law Project has used provider directories to examine the number of specialists with Board certification who are available in each county. Pennsylvania Health Law Project will use several years of data to determine whether plans contract with many providers when they first enter the Medicaid market in order to attract enrollees and then reduce their provider networks over time.

Sources: Joe Rojas-Burke, "Group says health plan access spotty," The Register-Guardian, (Eugene, OR), March 8, 1994, and information from Ann Torregossa, Pennsylvania Health Law Project, Philadelphia, March 2000.

CASE STUDIES:
ILLINOIS AND NEW YORK Testing Marketing Procedures

In 1996, amidst reports of Medicaid managed care marketing abuses, Illinois Campaign for Better Health Care collected complaints about marketing abuses from consumers. The Campaign then issued a report about the history of marketing problems in Illinois and made recommendations for corrective action. With the Campaign, the Chicago Sun-Times newspaper went undercover to determine whether health benefits counselors in Public Aid offices could correctly answer questions about managed care options and whether state-sponsored seminars about health care options provided adequate information. They did not. One marketer said a health plan would enroll the healthy members of a household but added, "I'll have to call my boss about the other child [with cancer]." Seminars did not inform participants that by joining an HMO, they risked losing access to providers who were not part of the HMO network. The Campaign's advocacy eventually led Illinois to end door-to-door marketing practices and contributed to national recognition of abusive Medicaid managed care marketing. Door-to-door Medicaid managed care marketing was outlawed nationally in the Balanced Budget Act of 1997.

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In 2000, the Public Advocate for the City of New York tested the performance of the "help line" operated by the Medicaid managed care enrollment broker. Medicaid beneficiaries, working in partnership with the Office of the Public Advocate, repeatedly called the help line to test the accuracy of its response to 12 questions. In all, surveyors asked 150 questions. Two-thirds of the calls resulted in incorrect or inadequate information. The Public Advocate made recommendations for improving enrollment procedures.

Sources: Illinois Campaign for Better Health Care, Champaign, Illinois and the Center for Community Health Action, Families USA, Boston, MA, now called Community Catalyst, Illinois Managed Care Marketing Abuses: Dangerous Precedent, Dangerous Future (Champaign, IL: Campaign for Better Health Care, May 1996); Della de LaFuente, "State HMO Abuses Found: Tactics Lead to Confusion in Medicaid," Chicago Sun-Times, Chicago, Illinois, May 26, 1996; Mark Green and Tom Halliard, I Don't Understand": Poor Educational Campaign Weakens Start-up of City's Medicaid Managed Care Program (NYC: Public Advocate for the City of New York, February 2000).

Endnotes
1 Health Care Financing Administration (HCFA), Monitoring Guide: Medicaid Managed Care Initiatives (Baltimore, MD: U.S. Department of Health and Human Services, Health Care Financing Administration, Working Draft, January 1997).