Managed Advocacy in Action The Families MAP Blueprint ABC for Health, Inc. Managed Advocacy in Action The Families MAP Blueprint ABC for Health, Inc. This project was supported through a grant from the Health Resources and Services Administration, U.S. Department of Health and Human Services. AAAAABBBBBCCCCC fffffooooorrrrr HHHHHeeeeeaaaaalllllttttthhhhh,,,,, IIIIInnnnnccccc..... 152 W Johnson St, Ste 206 Madison, WI 53703 1-608-261-6939 1-800-585-4222 www.abcforhealth.org Copyright © 2002 by ABC for Health, Inc. All rights are reserved. No part of this publication may be reproduced, in whole or in part, without the permission of ABC for Health, Inc., 1-608-261-6939. This report was funded with a grant from the Maternal and Child Health Bureau, Health Resources and Services Administration. It does not necessarily reflect the views of the Bureau, HRSA, or Department of Health and Human Services. About ABC for Health ABC (Advocacy and Benefits Counseling) for Health, Inc., is a nonprofit public interest law firm that provides free health benefits counseling for families who have children with special health needs and legal services for low-income Wisconsin families having problems paying for health care. ABC gives information on available health care resources, helps families get benefits from private insurance and public financing programs, and helps resolve disputes with insurance companies, health care providers, and government agencies. Contents Preface 5 Chapter One Background 7 Chapter Two Managed Advocacy Project 13 Chapter Three A Blueprint for Helping Families with Health Care Coverage 15 Chapter Four Identifying Barriers in Managed Care 19 Chapter Five Families MAP and Health Benefits Counseling: The Blueprint in Action 25 Chapter Six Working with HealthWatch Committees 35 Chapter Seven Conclusion 45 Appendices A: Wisconsin Services and Programs 47 B: Intake Form 49 4 (cid:127) Contents MANAGED ADVOCACY IN ACTION C: Health Care Financing Resources 51 D: HealthWatch Mission Statement 59 E: Prior Authorization Insert 61 F: HealthWatch Digest 63 G: Medicaid/HMO Contract 65 Preface Families Managed Advocacy While many challenges remain in the process Project of developing a coordinated advocacy system for CSHN, Families MAP is a proven model that has Negotiating the complex system of health care cov- provided parents with education, advocacy, support- erage in this country is truly a bewildering task. Sadly, ive services and, most importantly, a voice in policy cost containment measures like prior authorizations, development that both helps managed care organi- gatekeeper physicians and restricted networks pose zations to better serve children with special health great challenges to obtaining needed care for chil- needs and also promote the confidence of families dren with special health care needs. And it is not that their children are getting needed and appropri- just HMOs that are restricting access to health care ate care. coverage. Today, most care is delivered by managed care plans that dominate the health insurance land- Families MAP agencies scape. As a result, new rules and new procedures may needlessly compound the stress and frustra- As the lead agency for this project, and the host of tion of patients and caregivers. Many families are the Dane County pilot site. ABC for Health is a non- confused by the cost containment features of man- profit public interest law firm based in Madison, Wis- aged care and the payment systems that seem con- consin, which is dedicated to ensuring health care trary to the best interests of medically involved coverage for children and families, particularly chil- children. dren with special health needs. Our partners included The Families Managed Advocacy Project (Fami- Community Advocates, a grass roots advocacy or- lies MAP) was one of thirteen projects funded na- ganization working in urban Milwaukee on health tionally by the Maternal and Child Health Bureau to care issues, and the Chippewa County Department examine and detail the impact of managed care ser- of Public Health, the home of one of five Regional vices on children with special health needs (CSHN) CSHCN Centers in located in northern Wisconsin. and develop strategies to improve family satisfac- All organizations in the project share a mission of tion and involvement in the care received. In this providing information, advocacy tools and support project, partner agencies located in three different to CSHN. As such, our working relationship was en- parts of Wisconsin—Chippewa, Dane and Milwau- riched by a common vision of a better system to serve kee Counties—worked together to identify and com- the needs of children and families. pare differences in the barriers CSHN face in Because of the diversity of our communities and managed care. Strategies were developed for over- needs, our goals were pursued, not in lockstep, but coming these coverage and access barriers through rather by following different pathways guided by com- partnerships with families, medical providers, policy munity concerns and priorities. Consequently, we makers and representatives from managed care or- ganizations. 6 (cid:127) Preface MANAGED ADVOCACY IN ACTION believe that the Families MAP model can be adapted This project was informed by nearly fifteen years and fine tuned to serve a variety of communities of experience with health benefits counseling and across this country. working with families that have children with special health care needs. This managed advocacy model also relies heavily on the elements of the Medical Using this guide Home model (as defined by the American Associa- tion of Pediatrics) and the Maternal and Child Managed Advocacy in Action reports on the devel- Health’s Achieving and Measuring Success: A Na- opment and operation of our Families MAP project, tional Agenda for Children and Youth with Special and also provides a flexible blueprint for the devel- Health Care Needs and its objectives for ongoing opment and growth of managed advocacy programs and comprehensive health care for CSHN. in other communities. This report gives a brief back- Is the Families MAP program appropriate for ground on the families, programs and resources your community? Certainly a better-coordinated ad- around which Families MAP was developed, followed vocacy infrastructure and supportive services for by chapters describing the health benefits counsel- parents is needed in Wisconsin. Families MAP pro- ing model that provides the core philosophy behind vides a framework for helping to build capacity within the client and committee work making up this project. communities, to identify key stakeholders and to pro- Much of our work was guided by the critical involve- vide a forum for issue identification and strategy ment of parent advocates working with the projects. development to resolve barriers encountered by Input from families began with identification of sig- families. And most importantly, a managed advocacy nificant care and coverage barriers. The strategies program can help us achieve our vision of a better and action steps developed to address these barri- health care system that supports partnerships, ad- ers are described in subsequent chapters. vocacy and a medical home for children with special health care needs. Chapter One Background The Families Managed Advocacy Project (Families ditions that are specific to children. Each of these MAP), which involves health benefits counseling, conditions brings with it a special set of care require- coalition building, community education, and policy ments and family needs that require a unique re- reform both inside and outside of managed care or- sponse from the medical caregivers. ganizations, is designed to enable families to access All children are dependent on adults for protec- the most reliable and comprehensive health care for tion, guidance and care. Children with special health their children with special health needs. care needs are no different except that the level of These children with special health care needs those needs are complex and require far greater time (CSHCN) range in age from birth to 21 years of age and attention from parents and the rest of the family. and have a long-term, chronic physical, developmen- The child with special health care needs often re- tal, behavioral or emotional illness or condition. Their quires expansive medical services that cross the line illnesses or conditions: between medical and home care including: primary (cid:1) are severe enough to restrict growth, de- care, specialty treatment services, mental health services, prescription drugs, durable medical prod- velopment or ability to engage in usual ac- ucts, nutritional services, community-based services, tivities; home nursing services and specialized day care. (cid:1) have been or are likely to be present or per- Clearly, the needs of children with special health care sist for 12 months to lifelong; and needs are complex and multifaceted, necessitating (cid:1) are of sufficient complexity to require spe- comprehensive and coordinated health care ser- cialized health care, psychological or edu- vices. cational services of a type or amount beyond that required generally by children. Examples of their illnesses or conditions include Family factors cerebral palsy, leukemia, diabetes, autism, attention- deficit hyperactivity disorder and severe asthma. There is no doubt that there are many challenges in Based on the above definition used by the Wis- raising a child with special health needs. From the consin Children with Special Health Care Needs Pro- day of birth or the onset of symptoms, the family has gram, it is estimated that about fifteen to eighteen to rely constantly on medical professionals and sup- percent, or about 274,000, Wisconsin children have port personnel to deliver the care their child needs. special health care needs. Like it or not, the family network must be expanded Their needs are as broad as their numbers. Un- to include skilled and reliable caregivers, knowledge- like adults, children are susceptible to a multitude of able case managers, medical and educational per- rare childhood disorders and a smaller set of com- sonnel. These individuals need to have direct access mon ones—there are over two hundred chronic con- 8 (cid:127) Background MANAGED ADVOCACY IN ACTION to the child and, often, the home of the family. While cated that they had health insurance. Of that group, most families welcome supportive services, family 44 percent of families identified Medicaid or Bad- and individual privacy is frequently compromised. gerCare as their primary source of health insurance. Having a child with special health needs brings Just three percent of families receiving care coordi- many other unique challenges to a family. A child’s nation reported no insurance, but there is another siblings might feel frustrated and left out, often long- nineteen percent for who did not identify any primary ing for the attention that a child with special needs insurance. demands. Stress in a household can increase tre- One of the most frustrating challenges for fami- mendously, buoyed by the extra work, extra finan- lies was the overwhelming complexity of the cover- cial requirements and extra emotional attention a age choices and of the coverage options within care child with special needs requires. In an ideal world, plans. In addition, many families were dealing with a child’s medical professionals and health care in- more than one type of coverage or with frequent surance should support the family and their needs, changes in employer-sponsored plans. In our work not become an additional stressor in their lives. The with almost 2,000 families to secure coverage and unfortunate reality is that frequently families need to clarify covered services, programs fell into three battle to get what their children need. broad categories: 1) private health insurance plans, Additionally, Wisconsin’s geographic character- 2) public coverage and services including Medicaid/ istics impact the health care and supportive services BadgerCare and Birth to 3, and 3) educationally re- that children with special needs might receive. Those lated supports and therapies provided through local who live in rural areas often have to drive long dis- school districts. tances to an appropriate primary care provider and The families who sought assistance through the even longer distances for visits to specialists. Thera- Families MAP health benefits counselors were typi- peutic interventions might not be available to them cally two-parent households, most with one or two at all, or in a reduced capacity, depending on skill children and incomes over 200 percent of the pov- and location of needed therapists. Those who live in erty level. Those with higher incomes typically had densely populated urban areas, might be physically private insurance and many also had Medicaid cov- close to appropriate providers, but might not have erage through the Katie Beckett Program. Families the resources to access those providers. Particularly with lower incomes often had SSI eligibility and there- for families in poverty, lack of transportation options, fore Medicaid coverage for the child with special time availability, lack of child care options, and the needs. Approximately eleven percent had no cover- sheer number of medical appointments can be over- age for the family. whelming. For these families, the inclusion of a medi- The service needs families most often re- cal case manager, as in the medical home model, quested help with were advanced medical care (i.e., can be a virtual lifesaver for many families manag- surgery, cancer care, hospitalization due to complex ing their child’s health care. care needs), therapies (speech, physical, and occu- pational), mental health services, and prescription medications. The coverage issues related to these What coverage programs are services were typically benefit limitations (such as Wisconsin families using? an insufficient number of therapy sessions covered), benefit exclusions (no coverage for mental health), Most CSHCN in Wisconsin are insured. According denials of coverage as not medically necessary, and to the Maternal and Child Health Title V 2002 Block costs not covered due to copays and deductibles. Grant Application, 77.9 percent of families with chil- dren with special health care needs surveyed indi-