A National Teleconference TRAINING MANUAL April 27-28, 1999 CHALLENGE '99 Bridging the Great Divide! Independent Living and Health Care: Individual Services, Advocacy, and Resources IL NET NCIL/ILRU National Training & Technical Assistance Project 1999 ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713-520-0232 (v) 520-5136 (TTY) 520-5785 (fax) Permission is granted for duplication of any portion of this manual, providing that the following credit is given to the project: Developed as part of the IL NET: NCIL/ILRU National Training and Technical Assistance Project. Developers of this TRAINING MANUAL: June Kailes Raymond Lin Laurel Richards Rose Shepard Dawn Heinsohn TABLE OF CONTENTS Agenda Learning Objectives List of Presenters and IL NET Staff About the IL NET About the Presenters Pre and Post Call Activities An Alliance at Risk: The Disability Movement and Health, By Sara Watson Independent Living Centers and Managed Care: Results of an ILRU Study on the Current Level of Direct Involvement Experts Meeting on Managed Care Empowerment in Managed Health Care: People with Disabilities in a Changing Health Care About "Legal Protections for People with Disabilities": A Research Project of the RTC on Managed Care Handling Problems with Managed Care: Legal Protections Appendix A: Assistance for Persons with Learning Disabilities Appendix B: About The DOJ Mediation Program Rural Health and Disability Developing and Evaluating Community-based Health Promotion Programs for People with Disabilities Program Evaluation of the Center for Living & Working, Inc. Health Professionals Promoting Independence CDC's Secondary Conditions Prevention Branch Independence Disability/Health Grants Teleconference Audio Tape Order Form Teleconference Evaluation CHALLENGE '99 AGENDA April 27-28, 1999 1. Welcome and Overview - June Isaacson Kailes a. Examine the independent living paradigm and the medical model message b. Independent living movement has never conceptualized disability as a health care issue! 2. Handling problems that arise with managed care - Wendy Wilkinson and Mary Anderlik a. Need for sophisticated level of knowledge regarding managed care issues b. Nondiscrimination laws that are applicable c. Types of decisions, policies and practices being challenged d. Arguments which have been successful in these challenges e. Tools for navigating this "alien universe." 3. Questions and Answers 4. Living Well with a Disability Workshops - Craig Ravesloot a Description of the workshop b. Experiences in implementing the workshop - David Robar c. Outcomes d. Potential funding sources: i. Medicaid waiver programs ii. Managed care organizations iii. Private foundations iv. State-based disability and health projects a. Resources available for technical assistance i. Sponsor annual and semi annual training ii. Web page support b. Future Plans i. Recruiting participants ii. Teleconference workshops iii. Online workshops 5. Questions and answers 6. Services - Dennis Fitzgibbons a. The Worcester experience b. Experience with "Living Well Workshops" c. Training Health Providers d. Future Plans 7. Resources - Linda Gonzales a. The Public Health Connection - why it's important for CILs to get involved b. Health and Wellness at the local level - a role for CILs c. Resources and ways to be involved 8. Questions and Answers 9. Wrap-up - June Isaacson Kailes LEARNING OBJECTIVES Objectives: Learn about: The variety of health related best practice supports and services [their goals, objectives, outcomes and potential funders] being offered by independent living centers including: - providing a variety of benefit counseling supports - offering health and wellness workshops - operating health services - training health providers Some new implications of the independent living paradigm and the medical model message Resources LIST OF PRESENTERS AND IL NET STAFF PRESENTERS June Isaacson Kailes Disability Policy Consultant 6201 Ocean Front Walk, Suite 2 Playa del Rey, CA 90293-7556 (310) 821-7080 (v) (310) 827-7470 (fax) http://www.jik.com jik@pacbell.net Mary R. Anderlik Health Law and Policy Institute University of Houston Law Center Houston, Texas 77204-6381 http://www.lawlib.uh.edu/LawCenter/Program s/Health/health-law.html (713) 743-2454 (v) (713) 743-2117 (fax) manderlik@central.uh.edu Dennis Fitzgibbons Director of Operations Alpha One 127 Main Street South Portland, ME 04106 (207) 767-2189; 1-800-640-7200 (v) (207) 799-8346 (fax) Dennis_Fitzgibbons@Alpha-One.org http://www.alpha-one.org Linda Gonzales, Consultant New Mexico Disability and Health Program 5903 Powdermill Road Kent, Ohio 44240 (330) 678 7648 (v) (330) 678 7658 (fax) LGonz21800@aol.com Craig Ravesloot, Director Rural Health Research The Rural Institute on Disabilities University of Montana 52 Corbin Hall Missoula, MT 59812 (406) 243-2447 (v) (406) 243-2349 (fax) raves@selway.umt.edu http://ruralinstitute.umt.edu/rtcrural/ David Robar, Public Information Coordinator Granite State Independent Living Foundation P.O. Box 7268 Concord, NH 03301-7268 (603)-228-9680, (800)-826-3700 (v) (603) 225-3304 (fax) david.robar@gsel.org http://www.mv.com/ipusers/gsilf Wendy Wilkinson, Project Director SW Disability and Business Technical Assistance Center 2323 South Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (v) (713) 520-5785 (fax) wendy@ilru.org http://www.ILRU.org IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Carri George Program Director Publications Coordinator richard.petty@bcm.tmc.edu cgeorge@ilru.org Laurel Richards Dawn Heinsohn Training Director Materials Production Specialist lrichards@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 (713) 520-0232 (v); 520-5136 (TTY); 520-5785 (fax) ilru@ilru.org NCIL Anne-Marie Hughey Raymond Lin Executive Director Logistical Coordinator amhughey@aol.com raymond_lin@msn.com 1916 Wilson Blvd., #209 Arlington, VA 22201 (703) 525-3406 (v); 525-4153 (TTY); 525-3409 (fax) ncil@tsbbs02.tnet.com ABOUT THE IL NET This training program is sponsored by the IL Net, a collaborative project of Independent Living Research Utilization (ILRU) of Houston and the National Council on Independent Living (NCIL). The IL NET is a national training and technical assistance project working to strengthen the independent living movement by supporting centers for independent living and state councils on independent living. IL NET activities include workshops, national teleconferences, technical assistance, on-line information, training materials, fact sheets, and other resource materials on operating, managing, and evaluating centers and SILCs. The mission of the IL NET is to assist in building strong and effective CILs and SILCs which are led and staffed by people who practice the independent living philosophy. The IL NET operates with these new objectives: Assist CILs and SILCs in managing effective organizations by providing a continuum of information, training, and technical assistance. Assist CILs and SILCs to become strong community advocates/change agents by providing a continuum of information, training, and technical assistance. Assist CILs and SILCs to develop strong, consumer-responsive services by providing a continuum of information, training, and technical assistance. ABOUT THE PRESENTERS June Isaacson Kailes, works as a disability rights advocate and project developer in the independent living movement. One of the original respected and recognized national leaders in the Independent Living Movement, June has a presidential appointment to the United States Access Board and currents serves as its vice chair. She chaired the Committee on Telecommunication as well as serving as Board's liaison to the Telecommunication Access Advisory Committee and the Passenger Vessels Access Advisory Committee. She also serves on other national committees and boards which include the Alliance for Technology Access and Pacific Bell's Telecommunication Citizens Advisory Panel and Advisory Group on People with Disabilities. She has held many offices on the boards of the National Council for Independent Living (NCIL) and the California Coalition of Independent Living Centers. Prior to establishing a full-time consulting practice in 1989, Kailes worked for the Westside Center for Independent Living (WCIL) in Los Angeles. During her eight years as executive director, she established WCIL as one of the largest, most respected independent living centers in the United States. June is the recipient of many awards and has written over 50 disability-related publications including numerous articles, book chapters, monographs and training manuals. Her latest popular books include: A Guide to Planning Accessible Meetings, Americans with Disabilities Act Compliance Guide for Organizations, Be a Savvy Health Care Consumer, Your Life May Depend on It! and Health, Wellness and Aging with Disability. Mary Anderlik joined the Health Law and Policy Institute at the University of Houston as Research Professor in September of 1998. She received an A.B., magna cum laude, from Bryn Mawr college in 1985 and a J.D. from Yale Law School in 1989. In 1997, she received a Ph.D. in ethics with a specialization in biomedical ethics through the Department of Religious Studies at Rice University, in cooperation with the University of Texas Health Science Center-Houston. Her dissertation on ethics and managed care received the John W. Gardner award for best dissertation in the fields of Humanities and Social Sciences. Prior to joining the Institute, she held a one-year post-doctoral fellowship in Clinical Ethics at The University of Texas M.D. Anderson Cancer Center. Mary and Wendy Wilkenson are collaborating on a research project that is examining legal protections for people with disabilities in managed care. Dennis Gitzgibbons career has spanned teaching at the high school level, business administration in the private sector and CIL management. In recent years Dennis has focused on improving access to health care for people with disabilities. He has worked with managed care organizations, HMOs, hospitals, provider groups, state Medicaid systems, and medical schools to advance awareness of disability and the health care issues and needs of people with disabilities. He has worked extensively to educate people with disabilities and the health care providers who serve them regarding quality of care, access to care and the involvement of people with disabilities in the development, implementation and evaluation of systems designed to meet their unique health care needs. He has advocated at the state and federal levels for public policy development that assures managed care systems adequately address the unique health and social needs of people with disabilities. He is a past member of the Maine SILC, a member of NCIL, and serves on the Board of Directors of Consumers for Affordable Health Care in Maine and the Board of Directors of The American Association on Health and Disability. Dennis has promoted disability rights in personal assistance, housing, transportation, employment and health care for over 25 years. Linda Gonzales is a longtime advocate in the field of independent living and disability rights. Formerly the director of New Vistas in Santa Fe, NM, she is currently a program consultant to the NM Disability and Health Program and the National Coordinator for the Association of Programs for Rural Independent Living (APRIL). Ms. Gonzales has worked with centers for independent living (CILs) in the area of health and wellness for people with disabilities for the past six years. Activities include: coordinating local and statewide conferences on health promotion, recreation, prevention of secondary conditions and wellness issues etc. She has also trained IL staff to work with consumers who have health-related goals, has conducted disability awareness, IL philosophy and disability health issues to local and state public health offices and has presented on the subject at both state and national conferences. She was recently appointed by Secretary of Health and Human Services Donna Shalala to the newly formed Advisory Committee to the National Center for Environmental Health at the Centers for Disease Control and Prevention. She has a masters degree in education from the California State University at Northridge. Craig Ravesloot received his Ph.D. in Clinical Psychology from the University of Montana. He completed his clinical internship at the Palo Alto VA Medical Center working in Behavioral Medicine and the Spinal Cord Injury Center. He is a Licensed Clinical Psychologist who has been researching disability issues at the Research and Training Center on Rural Rehabilitation since 1988. He specializes in program development and evaluation of health and human services for people with disabilities. He led the development of "Living Well with a Disability," a workshop written for people that have physical limitations who desire to improve health status through improved self-direction and self-management. He also developed the New Directions program, a community-based behavioral medicine program that helps people with physical limitations access regular community fitness activities. David Robar has been a staff member at Granite State Independent Living Foundation (GSILF) since 1993. As public information coordinator for the center, David often represents the center through public speaking engagements, television and radio appearances, and by participation in center workshops and trainings. He also serves as editor to The Granite Slate, GSILF's monthly newsletter, where he frequently promotes health and wellness issues. David has a deep personal interest in wellness and recreation. Prior to sustaining a spinal cord injury in 1990, he was a member of the Eastern Division Elite ski jumping team, and ski jumped in the 1988 Olympic tryouts. Today he maintains a strong belief in the importance of nutrition and exercise in ensuring good health and an active lifestyle. Wendy Wilkinson is an attorney and Project Director of the Southwest Disability and Business and Technical Assistance Center. The Center is a program of ILRU (Independent Living Research Utilization) which is based at the Institute for Rehabilitation and Research (TIRR). She has published a number of articles on the Americans with Disabilities Act and other disability related issues. In 1995 she was appointed Clinical Assistant Professor of the Department of Physical Medicine and Rehabilitation at the Baylor College of Medicine. Both Mary Anderlik and Wendy are researching the efficacy and use of the legal protections available for individuals with disabilities challenging the decisions, policies and practices of managed care providers and systems. This research is being conducted for the Research and Training Center on Managed Care and Disability based at the National Rehabilitation Hospital Research Center (NRH-RC) in Washington, D.C. and the Independent Living Research Utilization (ILRU) program in Houston, TX. The purpose of the Center is to provide national leadership on the major health service and health policy issues facing consumers with disabilities in managed health care arrangements. The Center conducts research; prepares special policy analyses, hosts forums for discussion; presents expert testimony to Congress and governmental agencies; publishes in the health policy, consumer, and trade literature; trains graduate students with disabilities in health services research; and disseminates findings to the diverse consumer, provider, payer, academic, and policy making audiences. PRE AND POST CALL ACTIVITIES Note to Site Organizer  Ask participants to arrive at meeting site 1 hour and 15 minutes before the teleconference.  Please facilitate a one hour discussion before the teleconference. Here are some guidelines for doing so: Before the Call: Introduction: This conference will provide the opportunity for you to listen to and explore a variety of health related best practice supports and services [ their goals, objectives and outcomes] being offered by independent living centers.  Distribute handout materials  Explain that in order to gain full advantage from the conference it is helpful to review the material before the call. Please do so now and then we will make introductions and have a discussion focused on your current involvement in health related issues.  Ask participants to introduce themselves and during their introduction include answers to the following questions: 1. In what ways does your SILC or ILC currently offer health care related supports and resources? 2. Do you have future plans to strengthen your activities in these areas? 3. Share information regarding resources you may be using for these efforts. 4. What do you hope to gain by participating in this teleconference?  Ask participants to list their questions on flip chart or backboard. These questions can be can be checked off during the conference call when or if they are answered. After the call (optional): Discuss: 1. What, if any, new ideas you may explore or implement? 2. Ask participants to identify future subjects that can be addressed through teleconference approach to training. Copyright 1993 by New Prospect, Inc. Preferred Citation:Sara D. Watson, "An Alliance at Risk: The Disability Movement and Health Care Reform"The American Prospect no. 12 (Winter, 1993) (http://epn.org/prospect/12/12wats.html). AN ALLIANCE AT RISK The Disability Movement and Health Care Reform Sara D. Watson In the clamorous debate about health care reform, one group with much at stake has been strangely absent: people with disabilities. Yet they are the core of the population that most needs health care and is most likely to be uninsured or underinsured. Oddly, while the United States apppears on the verge of major changes in health care, the conventional proposals do not coherently address the needs of the very groups whose lives are most intertwined with the health care system. Both health care reformers and groups representing people with disabilities bear some responsibility for this inattention. On the one hand, many health care reformers believe mistakenly that social Security already provides adequately for people with disabilities and are wary of extending more coverage. On the other hand, many disability advocates in recent decades have sought to shift the framework of thinking about disability away from a medical model. Preoccupied with the struggle for civil rights, they have not been closely engaged in the debate over reform of the health care system. Indeed, in defending the rights of people with disabilities, some have categorically opposed any economic limit on services. The significance of this development for health care reform was vividly illustrated in the decision by the Bush administration in August 1992 to deny a proposal from Oregon to ration medical care for welfare beneficiaries on Medicaid. Even though Oregon's governor has a husband with paraplegia and a son with autism, and the Governor claimed the support of the state chapter of the Arc (formerly the Association for Retarded Citizens), national disability groups vehemently condemned the proposal. They charged that the methods Oregon used to rank the value of health care services discriminated against people with certain disabilities by assessing their lives as less valuable than others, and that Oregon's proposal therefore violated the Americans with Disabilities Act of 1990 and the Child Abuse ("Baby Doe") Amendments of 1984. Whether the Americans with Disabilities Act was the real reason behind Bush's decision is unclear. Disability rights may have been only a politically convenient ground for President Bush to reject Oregon's waiver during an election when he was charging that the Democrats favored health care rationing. Nonetheless, the decision raised a new complication for efforts to achieve universal coverage and control health costs: Are advocates of disability rights and health care reform now going to find themselves on opposite sides of the fence? Will disability groups be able to gain a middle ground that acknowledges their constituency's needs but rejects the medical model? In a society that views disability as a fate worse than death, policymakers who can't imagine life as a wheelchair user aren't likely to support comprehensive health benefits for people with disabilities. Never has it been more urgent for disability advocates and health care reformers to understand each other's concerns. DISABILITY MYTHS Contrary to common belief, Medicare and Medicaid do not cover all persons with disabilities. While 14.8 percent of the nondisabled population in 1984 had no insurance, 15.6 percent of the working-age population with an activity-limiting disability, or 2.1 million people, had none, according to a study by Robert Griss of the World Institute on Disability and Stuart Hanson of Berkeley Planning Associates. Underinsurance is a particularly severe problem for people with disabilities. While private health insurance plans typically cover acute care hospitalization and physician expenses, they rarely cover long-term needs, such as medical equipment or supplies, rehabilitation, or personal assistance services. For example, in testimony provided to the National Council on Disability in June 1991, a young woman with multiple sclerosis told of spending $8,000 out of her $20,000 annual salary on health-related needs, even though she has insurance from a full-time job. Ironically, although the value of certain preventive services, such as prenatal care, is well established, the value of preventive services for people with disabilities is virtually ignored. Many living in poverty must pay $10,000 for an electric wheelchair that will not only allow mobility but prevent expensive skin sores. Most people with disabilities do not use any more health care resources than average once their initial treatment is completed. However, people with chronic, severe disabilities do use more health care dollars on average than those without disabilities. Recent data compiled for the Health Insurance Association of America show that roughly 3 percent of the population--those with severe, chronic disabilities or illnesses--generates over half of the nation's health care costs. (For this article, people with disabilities refers to those with significant impairments; while most chronic illnesses result in disability, not all people with disabilities are ill. The two groups overlap but are not synonymous.) A study conducted by Gerben DeJong, Andrew Batavia, and Robert Griss showed that people whose disabilities are so severe they are unable to carry out major life activities generate as much as six times the hospital costs and three times the physician visits as those with no disabilities. These categories represent large numbers of people. The National Center for Health Statistics reports that in 1987 there were almost 6.1 million working-age people with severe disabilities and another 26.7 million people with less severe disabilities. While people with disabilities have a large impact on the health care system, and vice versa, current proposals do not even acknowledge their distinctive needs. Some proposals do not provide universal access and would require high users of care to bear a large portion of the costs at a time when they can least afford it (disabled people are much poorer on average than nondisabled persons). Most proposals do not provide the types of rehabilitation and chronic-care benefits that people with disabilities need. Limits in benefit coverage for people with mental disabilities are common. Even the Senate Democratic leadership's plan includes no outpatient rehabilitation services, no durable medical equipment, no prescription drugs, and limited mental health care. The plan would replace Medicaid with another public plan that would provide even fewer benefits. Ironically, while introducing the bill, Senator Edward M. Kennedy extolled the health care treatment his son received when he fought bone cancer, not realizing that under the bill that level of care would not necessarily be available. I raise these points not primarily to criticize the sponsors but to show that even the staunchest supporters of people with disabilities sometimes do not realize the limitations of current proposals. We desperately need to address these issues now rather than later: far better to know in advance what proposals can and cannot fix than to enact them and then be surprised that the problems persist. THE MOVEMENT'S AMBIVALENCE Health system reform would seem to be a natural issue for disability groups. For the past twenty years, however, the movement has attempted to transform the concept of people with disabilities from passive patients requiring supervised medical care to active consumers of social services who can make responsible decisions affecting their own lives. Older disability organizations have added a strong dose of civil rights advocacy to their traditional service orientation, and newer organizations, such as the Disability Rights Education and Defense Fund and the Mental Health Law Project, were founded explicitly to use legal means to protect and expand the civil rights of people with disabilities. These new organizations have cooperated with the older ones, but they have also clashed when they felt the others were not pushing for change hard enough. The disability movement's evolution has affected its ability to deal with health care reform. First, the movement has a diverse constituency, with very different service requirements, priorities, and methods of operation. Gaining universal support for one plan of action is difficult. Second, as social norms change, so do the goals of the movement. Their strategies for health care reform must respond to these changing sentiments. Third, with the exception of Senator Kennedy, the congressional supporters of disability rights are not the major players in the health care debate. As a result, disability groups do not have close allies in the key committees. Disability organizations have become active on health reform only recently. In the past two years, the National Council on Disability has conducted hearings; the Consortium for Citizens with Disabilities, a coalition of national disability organizations, has issued a position paper; and United Cerebral Palsy has started a grass-roots mobilization effort. But these activities have received scant press attention. When health policy is the topic of discussion, the disability movement is generally not at the table. The reasons for the movement's limited role are partly historical. Traditionally, people with disabilities have been a largely unorganized, disenfranchised group. Like other minorities, they have experienced discrimination; unlike other minorities, they have been isolated from each other, and the sheer physical difficulty of gathering together has impeded common action. The emergence of a disability rights movement has encouraged people to form cohesive lobbying groups and generated services such as personal assistance and accessible public transit that have enabled them to organize. But the disability rights organizations have been busy working towards other goals. The fight to pass the Americans with Disabilities Act of 1990 required virtually all the resources disability organizations could muster. Until not long ago, the prevailing trends in health care were actually beneficial to people with disabilities. Improvements in medical technology and rehabilitation methods led to increased survival rates and life expectancy. Until the 1970s, most insurance plans were "community rated" (which meant that employee groups including workers with disabilities paid no more than others). The practices most harmful to persons with disabilities, such as pre-existing condition exclusions and cancellation of policies in the event of high costs, have become common only recently. Even where problems with health care existed, many in the movement tended to deny them. Until recently, most disability advocates saw any assertion that people with disabilities have higher than average health costs as incorrect and even heretical. To overcome negative stereotypes employers and others held about people with disabilities, disability organizations emphasized positive attributes. They sought to counteract fears of expensive accommodations, unproductive workers, and high health care costs, insisting that none of this was true of people with disabilities. Employees with disabilities, according to this orthodoxy, would never miss work. They would gratefully stay in the same job for the rest of their careers. And their disability would not cause particularly high use of health care. The reality was somewhere in the middle. At the 1987 meeting of the President's Committee on Employment of People with Disabilities, a Reagan administration official praised employees with disabilities as willing to come to work through snowstorms when everyone else stayed home. A leading disability activist, Frank Bowe, countered that real independence would come to people with disabilities when they were allowed to be late or absent as much as nondisabled people. The disability movement has worked so hard for so long to separate the issues of health and disability that it has had to be extremely careful about how it brought them back together. It is difficult to publicize some members' need for significant benefits while not reviving the stereotype that all people with disabilities are sick and should be viewed as patients. Many organizations have made personal assistance services their top legislative priority. One tenet of the disability rights movement has been to de-emphasize the medical nature of a person's disability. Beginning in the 1970s, disability activists such as Ed Roberts and Judy Heumann began to challenge the traditional medical or home health model of providing personal assistance services in favor of the independent living model. Under the medical model, personal assistance services are viewed as health-related services provided to patients by aides supervised by medical personnel. Under the independent living model, they are social services provided to a usually healthy individual who can direct this assistance. The Consortium for Citizens with Disabilities' position paper calls for the inclusion of these services in health legislation. But again, the disability lobby needs to develop their strategy carefully to avoid resurrecting harmful stereotypes. The irony is that these services are cost-effective for health care insurers when they prevent expensive health problems. But including the service as a health benefit re-emphasizes their medical nature. In fact, while CCD's health care position paper calls for personal assistance programs, its personal assistance position paper stipulates that this program not be run by a medical or health agency. So, disability organizations are caught between adhering to a basic tenet of their movement--that these are social services that have little to do with a medical condition--and support for including personal assistance services in health coverage. FINDING A NEW LANGUAGE Once it becomes acceptable to acknowledge that some people with disabilities do need additional resources, how should those who share their concerns justify meeting these needs? Four basic arguments can be used:  Charitable obligation: Society has a duty to take care of the unfortunate.  Universal vulnerability: Any one of us could become disabled and might need these benefits.  Cost-effectiveness: Benefits pay for themselves in reduced secondary disabilities or improved ability to work.  Rights-based obligation: Access to health care is a civil right and should not be denied based on need for care. During the debate over the Americans with Disabilities Act, disability organizations used all of these rationales except charitable obligation, which they now regard as a degrading bid for pity. Especially in the initial stages of the debate, advocates emphasized cost-effectiveness, maintaining that the law would not create economic problems, since several studies had shown that people with disabilities could be provided with accommodations inexpensively. They also argued that these small costs would produce large benefits since people with disabilities would become valued employees and customers. But opponents of the legislation pointed out that it could require some expensive accommodations that would not necessarily be cost-effective for the employer or owner of the public facility. Some disability advocates still emphasize cost-effectiveness, while others have rejected that strategy, insisting that the additional costs are irrelevant. At one meeting, an advocate suggested that disability leaders stop apologizing for the cost of the Americans with Disability Act and recognize that it was society's obligation to pay that price. It is inappropriate, in this view, to put a price tag on a civil right. What justification should the disability movement use in the debate about health reform? Civil rights seems an obvious choice. Now that disability advocates have made access to public telephones and dry cleaners a civil right, it should be easier for them to make the same argument for health care. However, it is clear just how expensive access to health care is. In the debate over the Americans with Disabilities Act, the little data available pointed to limited costs, and, in an unusual twist, the consumer advocates were more sophisticated than their opponents. In health system reform, the stakes are higher, more groups are competing for resources, the opponents are more knowledgeable, and the data are more complex. Almost all sides accept the need for universal access to health care, but none can simply assert that cost is irrelevant. Cost-effectiveness arguments also have limitations. Many health care benefits do prevent more costly health conditions and allow those with disabilities to work and pay taxes. But leaning too heavily on these arguments begs the question of how to justify services that neither prevent more costly illnesses nor raise tax collections. Relying on cost-effectiveness is also dubious when benefits improve quality of life in ways that are hard to measure--for instance, therapy that improves someone's range of motion but does not affect the ability to work. The strongest argument is enlightened self-interest based on universal vulnerability. First, anyone can become disabled. Second, any of these "anyones" would want the health care needed to recover as much as possible of the lifestyle they had before. To stress the first part of the argument, advocates use the acronym TAB--temporarily able-bodied--to describe everyone without a disability. One reason that groups representing the elderly exert so much influence is that virtually everyone can expect to join them. Not everyone will become disabled, but mainstream voters' identification with disability concerns should increase if they sense common risk. Former Reagan press secretary James Brady's sudden entrance into the community of disabled persons--indeed, his transformation into an activist--jolted more than a few public officials into recognizing that disability is only as far as an unthinking step in front of a bus. The "it can't happen to me" mentality is what classically gives young men their sense of immortality. And this sentiment pervades the rest of society. However, the constant push to mainstream people with disabilities in schools, jobs, and places of public accommodation is breaking down this barrier. It offers some hope that the general public will feel a stronger stake in policies that affect those with disabilities. HANDLING THE "R" WORD Virtually all reform proposals under discussion aim to increase access to a standard of basic or mainstream health care. Some segments of the disability community do need access to basic care. Still others--for example, those with severe brain injuries--need large amounts of sophisticated and expensive care. The disability community will need to consider how to present and represent this diverse set of needs. The disability rights movement is no stranger to diverse needs; the coalition that supported the Americans with Disabilities Act was remarkable in its cohesiveness. For example, when conservatives pressured disability groups to drop coverage of people with AIDS, the coalition held firm. The disability movement's commitment to preventing restrictions on care has shaken its usual political alliances, at least on two issues. As a disadvantaged group in society, disability advocates have tended to support more liberal positions. Nonetheless, some advocates have allied themselves with political conservatives on abortion rights and on the question of allowing family members to withhold treatment from severely disabled children and adults. Some advocates are fearful that unbridled abortion rights will lead to parents deciding to abort fetuses with severe or even minor disabilities. They feel that prospective parents with no knowledge of how disabled people live with their disability will assume that it would be better if their children were not born. Furthermore, aborting a fetus sends a frightening message to people who have grown up with that disability. A natural corollary to this position is opposition to euthanasia and support for unlimited treatment for the most severely disabled people--newborns, children, and adults. For people in the disability community, it is a small step from deciding to turn off a respirator for a comatose person to deciding to turn it off for someone with whom they work everyday. These positions, however, run up against one of the most controversial but inescapable issues in health system reform--allocation of limited resources. Given the need to contain costs, serious proposals have to set priorities. That imperative puts disability groups in a delicate position. They opposed the Oregon plan largely because it explicitly denied care to people with some disabilities (such as very low birth weight infants), even though Oregon would have extended care to people with other disabilities who are now ineligible for Medicaid. Instead, they argued, the government should reform the entire system before rationing medical services. However, disability organizations have not offered any substantial measures for containing costs, except uncontroversial ideas about administrative streamlining. It will not suffice simply to demand more services and to be uncompromising about costs. In the current political climate, taking the position that we should all get as much care as we desire for as long as we desire puts disability organizations outside the realm of real political negotiation. The only answer is to propose means to change both the financing and delivery system to provide a reasonable level of health care at a price society will accept. Disability groups need to learn to speak the language of cost containment, managed competition, and organized systems of care--concepts that support full allocation of health care resources to meet a person's needs while containing overall health care costs. Unfortunately, most current proposals use means of cost containment that are unacceptable to people with disabilities. Many plans would make available a basic benefits package including arbitrary limits on the number of physician visits, inpatient hospital days, or lifetime or annual benefits. Some proposals would extend systems of managed care that rely on poorly informed gatekeepers to minimize access. And many would ask those facing high costs to bear more of the burden to encourage them to minimize their purchases or at least to make cost-conscious choices. These routes all have profound flaws for people with disabilities. Arbitrary limits do not permit distinctions between the hypochondriac and the person whose chronic condition can be held in check by frequent, inexpensive primary care visits. Some managed care plans that require authorization for costly services may prevent some unnecessary hospitalization but also hinder access to needed specialized care. Finally, people with disabilities, especially severe ones, are also more likely to be poor and unemployed. It is unreasonable to require them to expend more of their income on services when they have so little control over their need for such services. Rather than simply designing a basic benefit package that is somewhat more than most people need in a given year but far less than a few need most of the time, it makes more sense to design an organized delivery system that allocates care according to what people need to become and remain healthy. The best type of managed care delivery system uses humane and reasonable methods to contain costs, such as working with health care providers, purchasers of services, and people receiving services to find less expensive treatments like home care. And rather than dictating courses of action, case managers act as advocates for people seeking treatment, helping them identify and select acceptable alternatives. Of course, there will be disagreement about which treatments deserve funding. However, these differences will be minimized and unpopular decisions easier to accept if people with disabilities see that all other steps to reduce costs have been taken and decision makers are considering their long-term health goals and not simply short-term savings. This is not a utopian notion. It is what some health maintenance organizations have long been doing. Disability groups have strenuously opposed managed care for good reason. But to participate in the debate, they need to learn about such alternatives to ensure that they meet their needs better than unmanaged fee-for-service medicine. If disability organizations can resolve these questions, there seem to be two major roles they could play in the debate on health system reform. First, Washington runs on paper. Disability groups must become much more active in the debate by participating in meetings, commenting on proposals, and framing their message to obtain media coverage. Second, disability organizations can use their grass-roots constituencies to support health care reform, as some organizations have started to do. Lawmakers won't do anything until the public says it is ready to face the consequences of change. Forty-three million Americans with disabilities and their families, teachers, friends, and co-workers are a powerful lobbying force in the state capitols and district offices. In lobbying for the Americans With Disabilities Act, many kept discrimination diaries--records of the everyday instances of discrimination they faced. Thousands of these were poured on the tables in committee hearings. The disability groups that mobilized that kind of activity can generate similar pressure on health care reform. If disability groups can form a cohesive lobbying bloc on health system reform and develop a strategy to influence other proposals, they could greatly enlighten the health debate. Our health care system will be better if they do. Copyright 1993 by New Prospect, Inc. Readers may redistribute this article to other individuals for noncommercial use, provided that the text, all HTML codes, and this notice remain intact and unaltered in any way. This article may not be resold, reprinted, or redistributed for compensation of any kind without prior written permission from the author. If you have any questions about permissions, please contact The Electronic Policy Network (query@epn.org), P.O. 383080, Cambridge, MA 02238, or by phone at (617) 547-2950 (voice) or (617) 547-3896 (fax). The American Prospect / Send us a message at prospect@epn.org Copyright 1996 New Prospect, Inc. November 25, 1998 RE: Readings in Independent Living This month's Readings presents findings from an ILRU study of roles centers are taking vis- a-vis managed care. Initiated in spring 1998, we asked Drew Batavia to take the lead in conducting this study for us. We were interested in collecting data on frequency with which centers are contacted by consumers with managed care problems, extent to which those problems relate to ability to pay for health care, accessibility of offices in which health care is delivered, physician understanding of disability-specific medical issues, extent to which centers are involved in advocating on behalf of consumers' health care concerns, and so on. This is a study that will need to be repeated periodically as our experiences with managed care evolves. Meanwhile, here are the initial findings. We would welcome any feedback you care to offer. The Readings in Independent Living series is supported by the IL NET: ILRU/NCIL National Training and Technical Assistance Project as part of its on-going work to foster growth and development among centers and statewide independent living councils. All publications in the Readings in Independent Living series are being sent to you free-of-charge by the IL NET. Readings in Independent Living Independent Living Centers and Managed Care: Results of an ILRU Study on the Current Level of Direct Involvement Background Since the beginnings of the independent living (IL) movement, independent living advocates have been reluctant to establish formal relationships with providers in the health care system. This reluctance is understandable. The movement was established in the early 1970s largely in response to the paternalistic way in which our society treated people with disabilities under the so-called "medical model." The medical model, in which the person with a disability is treated as a dependent patient who is supposed to accept the orders of the physician authority figure, was internalized by a society that was not accustomed to viewing people with disabilities who were capable of living independently in their communities. In the past 30 years, the world has changed dramatically in the way people with disabilities are perceived and treated. The enactment of the Americans with Disabilities Act of 1990 (ADA) demonstrates the movement's success in changing the perceptions of our citizens and their representatives in Washington concerning people with disabilities. The ADA signified that people with disabilities are first class citizens deserving of respect and capable of autonomy. This is not to suggest that the medical model has been eliminated from our society. However, there has been a remarkable reversal in the status of people with disabilities since the 1970s. Another significant change has been far less favorable for people with disabilities over this period of time. In the early 1970s, the health care system was still in a stage of expansion of eligibility and benefits. By the 1980s, and particularly the 1990s, health care costs were escalating rapidly, triggering a revolution of cost containment initiatives and growth of managed care. Just as the expansion tended to benefit people with disabilities, who on average have higher health care needs and costs, the subsequent contraction appears to have adversely affected many people with disabilities. Managed Care and Disability Managed care organizations (MCOs) include health maintenance organizations (HMOs), preferred provider organizations (PPOs), and other types of organizations that integrate the provision and financing of services. Although there is little firm empirical evidence on whether or not managed care has harmed people with disabilities, there have been many anecdotal accounts of care not provided or not provided adequately by managed care providers. Many people with disabilities are very concerned about access and quality of care in managed care organizations. Despite these changes, many independent living advocates maintain the traditional avoidance of interactions with the formal health care system. Although they have been involved in health- related issues, such as access to personal assistance services, they have not chosen to become involved in collaborations with health care providers. However, other advocates have chosen to cast aside the old views and develop such collaborative relationships. Recognizing this phenomenon, ILRU sponsored a study to determine the extent to which independent living centers have become directly involved in health care issues. The Independent Living Center/Health Care Study The 116 independent living centers that responded to the survey indicated that they encounter an average of nine complaints per month from consumers about their inability to receive health care services that meet their needs. This constitutes about nine percent of the average of 96 information and referral contacts that centers receive monthly concerning all issues, including health care. The average number of persons served by each center annually is 468. In assessing the types of complaints received, the centers indicated the following: 26.7% related to access (defined as inability to receive services for reasons other than financial, such as physical accessibility of the health care facility); 23.7% related to cost/finance (defined as inability to pay for health care services or to have insurance or HMO pay for such services on the individual's behalf); 11% related to quality of care; and 28.7% related to other concerns. On average, the centers estimated that 63.2% of complaints were specifically disability-related (as opposed to complaints that may also be voiced by non-disabled people). This study suggests that people with disabilities continue to experience problems in gaining access to health care services that meet their specific needs and in successfully resolving complaints with their managed care providers. Approximately nine percent of all complaints raised to independent living centers concern health care issues. If such centers, which tend to be relatively small organizations with limited resources, are receiving an average of almost nine complaints per month from their consumers, this is probably only the "tip of the iceberg" concerning the problem for people with disabilities. Almost two-thirds of the complaints heard by the responding centers related specifically to disability issues. This finding is consistent with the extensive research concluding that our health care system has not adequately addressed disability-related concerns, such as ensuring that providers are adequately aware of secondary conditions of people with disabilities (e.g., pressure sores, urinary tract infections, respiratory infections, and scoliosis). Research has identified the need to educate physicians about the health care needs of people with disabilities. While 86 of the responding centers (74%) intervene on behalf of consumers before health care organizations, only 4 centers (3%) indicate they have a formal policy for addressing health care complaints, and 15 centers (13%) say they have been involved in the actual provision of health care through employment of a health professional, establishment of a health care subsidiary, or development of an affiliation with a health care organization. Centers have been involved in a broad array of health care-related activity summarized below. Two centers in Wisconsin have been particularly innovative in establishing separate organizations for the actual provision of managed health care services to their clients and other people with disabilities. Centers Involved in Health Care Issues Those centers that indicated that they are involved in health care issues discussed the following areas of involvement: handling administrative functions in a Medicaid personal assistance services program, such as arranging for payment of personal assistants, worker's compensation, and payment of taxes; assisting Medicaid recipients with disabilities in transitioning to a state's new program in which all recipients must be enrolled in a managed care plan; operating a consumer education center concerning managed care under a new managed care system; serving as a point of contact where consumers could learn how and where to state complaints about their managed care organizations; working to influence health policies that affect its clients with disabilities, such as informing a state that all providers under its Medicaid managed care program must comply with the ADA, including requirements for physical and communication access; initiating a dialogue between the disability community and managed care providers to inform the organizations about the needs of people with disabilities; attempting to affect the definition of medical necessity under a managed care program to ensure that it included the concept of functional necessity, and working with a health care coalition to enact the state's Consumer Bill of Rights; providing training on the needs of people with disabilities including development and dissemination of training materials, both for managed care professionals and consumers with disabilities, including a consumer checklist on managed care issues; educating consumers on the advantages of having an advance directive, such as a living will or a durable power of attorney, to ensure that their wishes will be honored in the event of a catastrophic illness or injury that renders the individual unconscious or otherwise unable to communicate their desires; providing an information and referral packet to any consumer who requests information concerning home health services or personal assistance services, including the names and phone numbers of local agencies and individuals providing such services; assisting its consumers to advocate for themselves before managed care organizations; participating in health care forums for the purpose of voicing the concerns of people with disabilities at the center; providing advocacy services on behalf of its consumers before the various managed care plans that provide health care services under the program; establishing a relationship with a large HMO, in which a contact person was identified within the plan to discuss any issues that may arise concerning service to persons with disabilities; participating on a Technical Assistance Committee that developed a document to assist consumers in selecting a managed care plan; engaging in policy advocacy at the county level on behalf of its consumers who receive In- home Health Support Services, the program for personal assistance services in the state; assisting its consumers with eligibility and coverage issues under Medicaid and Medicare, including helping individuals to fill out the necessary application forms and to file appeals if denied eligibility; helping individuals to appeal denials of coverage of specific requested services; serving as an interface with the organization that operates the Medicare HMO program in the state, which allows enrollees to receiving a broader array of benefits than are available under the traditional Medicare program; providing education and advocacy with respect to health care services, and if needed, a staff member accompanies consumers on appointments to a health care provider or facility; providing technical assistance to managed care organizations in the state in ensuring the accessibility of services at these organizations, including sensitivity training related to disability; administering a smoking cessation program for people with disabilities; employing a consultant registered nurse and an occupational therapist to evaluate its consumers through a needs assessment for purposes of determining the amount of personal assistance services they may receive under Medicaid; establishing a for-profit subsidiary durable medical equipment company, that is wholly owned by the center; participating in a health and wellness program developed by the state university that is focused on independent living outcomes; ensuring that a state's new managed care program for people with disabilities under Medicaid will not discriminate against individuals with disabilities; serving as a fiscal intermediary for its state's personal assistance services program under Medicaid; assisting in the development of a class action law suit against a new quasi-governmental agency created to coordinate managed care for people with disabilities who are on Medicaid; and providing services as a home health agency, including a wide array of health care and personal assistance services. The Wisconsin Program Two independent living centers participate in the Wisconsin Partnership Program, and are among the very few centers in the country that have actually been involved in establishing providers of health care services for people with disabilities. The Wisconsin Partnership Program is a comprehensive program of integrated health care and long-term care services for people who are elderly or disabled, Medicaid-eligible, and eligible for the Medicaid level of care requirement. Participation in the program is voluntary, and the program's goals are to improve quality of care while containing costs, reducing inefficiency in the system, and increasing the ability of people to live in the community and to participate in decisions regarding their health care. The program was structured to allow qualified community-based organizations to enter into a Medicaid managed care contract with the Wisconsin Department of Health and Family Services. Contracting organizations receive a monthly "capitation payment" from the state for every enrolled person with a disability. A capitation payment is an amount of money that a managed care plan receives in exchange for providing all care covered under the plan. In this program, the individual's long-term care and most acute care, including physician services, is paid out of the capitation payment. The organization then is responsible for the care of each person regardless of provider or service setting (e.g., home, hospital or nursing home). Those organizations that participate in the program have agreed to function effectively as health maintenance organizations, and accordingly are placed "at risk" financially for the individuals enrolled. This means that, if they contain costs within the capitation payment, they receive a profit; if costs exceed the capitation payment, they incur a loss. Some financial protection is provided through "reinsurance," an insurance policy that organizations may purchase to protect themselves in the event that the enrolled population experiences an unusual level of health problems in any particular year. Currently, the program is being implemented on a demonstration basis at four sites. One site is enrolling people with physical disabilities between the ages of 18 and 64. Two sites are enrolling frail elderly people, and the fourth site is enrolling both young physically disabled people and frail elderly people. Two independent living centers have been key participants in the process of implementing this program. Access to Independence Center This center established Community Living Alliance, Inc. (CLA), as a not-for-profit offshoot corporation which provides health care services to people with disabilities ages 18 to 64 under a grant from the Robert Wood Johnson Foundation and under Medicaid waivers. The center decided to create a legally- and organizationally-separate entity in part to avoid any potential conflicts of interest. In other words, this arrangement in which CLA is an entirely independent organization allows the center to provide advocacy services to its consumers unencumbered by either a financial relationship or organizational loyalty to CLA. Currently, CLA provides services to a maximum of 300 eligible people with disabilities and is partially capitated with the state bearing part of the risk. A founding precept for CLA was that it should embody many of the tenets of consumer-control that are the foundation of the independent living philosophy. The following are several examples of this commitment: the CLA mission and by-laws were developed by consumers with disabilities; the CLA by-laws promote consumer control by requiring that a majority of people on the board of directors be people with disabilities; CLA uses ongoing focus groups, listening sessions and member training sessions to get ongoing member input on services; CLA is developing an active membership of people who receive services, and members directly elect representatives to the CLA board; the CLA provider network is designed based on consumer preferences for providers; consumers serve on the grievance committee of CLA; CLA consumers and outside advocates constitute a majority of that body; CLA is developing an "ethics" body (a Medicaid requirement for HMOs) that will also have consumers on it; and CLA provides independent advocacy services to all members who require assistance in grieving a CLA action, both internally and to funding sources. Center for Independent Living for Western Wisconsin This center is based in a rural area of the state that has limited health care services available. Like the Access to Independence Center which is based in a more urban area, it is also in the process of establishing a off-shoot organization to provide services under this demonstration program. The new organization will provide services to a population that includes both younger people with disabilities (ages 18-65) and older people with disabilities (ages 65 +). Should Independent Living Centers Be Involved in Health Care? The finding that an increasing number of centers are intervening on behalf of their consumers who raise health care complaints is not surprising. Independent living centers exist largely to advocate on behalf of the independent living needs of consumers. Health care concerns clearly interfere with the goal of living productively and independently in the community. However, relatively few centers have gone beyond basic advocacy with respect to health care issues. Of the 116 centers participating in this study, only four centers indicate that they have developed a formal policy or protocol for addressing health care complaints, and only 15 have been involved in some way in the actual provision of health care services. Again, this is not unexpected. Independent living centers were not established to be health care providers and are not particularly well-equipped to serve in this capacity. Those centers that have entered these uncharted waters generally have done so in response to necessity, and at the risk of disapproval from members of the independent living community. They have developed some innovative models which other centers may borrow or adapt to address their particular circumstances. Many of the centers that have been involved in health care issues have been subject to criticism by members of the independent living movement, who have both ideological and practical concerns about such involvement. Specifically, the critics are concerned over the traditional paternalistic treatment of people with disabilities by health care professionals under the "medical model" of care, as well as about actual abuse and neglect in some health care institutions. They argue centers that are too closely affiliated with health care providers have a conflict of interest and are not able to advocate for their clients rigorously. The centers involved in health care issues respond that they structure their provider relationships so as to avoid conflicts of interest. Moreover, they argue, if they do not fill the void, no one will meet the health care needs of their consumers with the knowledge and sensitivity that they can provide. Conclusions There is much validity to the concerns of independent living advocates over the treatment of people with disabilities by the health care system historically and over the medical model of caring for people with disabilities in particular. However, we must not confuse legitimate concerns about the health care system with counter-productive concerns about becoming more involved in the system. In fact, the system's many problems suggest that independent living advocates should become more involved. For this reason, it is now an appropriate time to reconsider the role of independent living centers in health care issues. Particularly in light of growing evidence that many MCOs are not adequately meeting the needs of people with disabilities, strong advocacy and perhaps direct involvement by independent living centers may be necessary to ensure that their consumers have access to the quality care they need under the models of care they prefer. Independent living centers and their advocates have many options concerning their potential involvement in addressing health care issues and in interacting with the health care industry on behalf of their consumers. Certainly, the movement should never accept the paternalism with which the health care system has traditionally treated people with disabilities under the medical model. However, it also should not attempt to deny to the world the obvious fact that people with disabilities need health care services and many need access to such services even more than people without disabilities. In particular, the independent living community should not refuse to deal with a health care system that is increasingly failing to meet the needs of people with disabilities. Centers that have become involved in health care issues should at least be given the benefit of the doubt in attempting to address the needs of their local consumer populations. They argue that they are not embracing the traditional health care system or the medical model, but are attempting to change the system by developing new models that meet the unique needs of their consumers. This approach appears to be in the best tradition of the independent living movement and independent living centers--to attempt to modify the surrounding environment to become more accessible to people with disabilities. In determining the next step concerning the independent living movement and health care, independent living advocates should ask themselves three questions: Is the health care system, which is now dominated by managed care organizations, adequately meeting the needs of people with disabilities in their communities? If not, should there be intervention to ensure that the health care system generally, and managed care organizations in specific, meet the needs of people with disabilities in their communities? If so, who can achieve this goal better than independent living centers? November 1998 by the ILRU Program. Empowerment in Managed Health Care: People with Disabilities in a Changing Health Care Environment: get from : http://www.ilru.org/mgdcare/confrprt.htm Experts Meeting on Managed Care People with disabilities and Medicaid managed health care programs Friday, August 28, 1998 Crowne Plaza Hotel Houston, Texas Table of Contents I. Introduction II. Meeting Format III. Introduction to Managed Care IV. Demonstration Programs in Oregon, Wisconsin, and Texas V. Roles of Independent Living Centers in Managed Care VI. Concerns, Problems, Solutions VII. Next Steps VIII. About ILRU IX. About the Research and Training Center X. About the Center on Emergent Disability XI. Participant List Introduction In the United States, approximately 42.7 million people have disabilities. Some preliminary data suggest that number is on the rise, especially among children and older citizens. "There are common concerns regarding access and equity that need to be addressed and much intersection between disability and poverty in the United States," said Glen Fujiura from the Center on Emergent Disability at the University of Illinois at Chicago. An Experts Meeting in Houston on August 28, 1998, convened to examine how the most "under-served" segment of the population of people with disabilities is being affected by Medicaid managed health care programs. The agenda featured demonstration programs in several states and explored the possible roles of independent living centers as service providers and program managers in managed care systems. The sponsors for the meeting were the Center on Emergent Disability at the University of Illinois at Chicago, the Rehabilitation Research and Training Center on Managed Care and Disability, the Rehabilitation Research and Training Center on Independent Living Center Management and Services at the Independent Living Research Utilization (ILRU) program, and the Robert Wood Johnson Foundation. It was part of a series of follow-up meetings focusing on specific issues recommended in the March 1998 conference on managed care and disability. "There are common concerns regarding access and equity that need to be addressed and much intersection between disability and poverty in the United States." Meeting Format Program planners, policy makers, providers, consumers, advocates, educators, and researchers were represented at this meeting. Before the meeting, attendees were polled on topics they wanted to see addressed:  managed care quality  services and outcomes  opportunities for independent living centers in managed care  "best practice" examples for managed care  Medicaid managed care  the evolution of managed care In order to ensure the highest level of individual participation possible at the meeting, and to foster the forming of relationships, only 40 people were invited to attend. The first half of the day consisted of a general overview of managed health care and a panel presentation related to Medicaid managed care programs in Oregon, Wisconsin and Texas. The afternoon portion of the meeting focused on the roles of independent living centers in managed care. "You don't appreciate good health until you have to use the health care system and you don't realize how out of touch the health care system is until you use it. People with disabilities use it all the time, and they know." Introduction to Managed Care During the past decade, there has been rapid inclusion of publicly insured (Medicaid or Medicare) populations, including people with disabilities and/or chronic, complex or special health care needs, in managed health care organizations. This is due to the implementation of new policies enacted by many states, as well as the federal government, according to Allan Bergman, Director of State-Federal Relations for United Cerebral Palsy Associations and Director of its Institute on Disability and Managed Care. Currently, more than 40 percent of Medicaid beneficiaries nationwide are served by managed care systems, and managed care is available to Medicaid recipients in every state. The UCPA's Policy on Managed Health Care includes this definition: A managed care system is distinct from the more traditional health care delivery system, often called a fee-for-service or indemnity system, in that in a managed care system, a payor contracts with a third party, a managed care organization (MCO), to manage the delivery of a defined constellation of health care services to an individual for a fixed payment for a fixed period of time, rather than paying for each service as it occurs and being billed by an individual health care provider. The MCO is positioned between the consumer and the provider and is responsible for arranging or providing services (or both) within the time and payment negotiated. A primary strategy of managed care is to allow payors to shift and/or share risk, as well as responsibility for quality and outcomes, with providers and consumers through a contracted process of capitated reimbursements and performance outcomes. The primary strategy of managed care entails:  Capitation, a fixed payment for the delivery of all contracted services for a contracted period of time;  Risk arrangements, the extent to which an MCO or a provider faces the potential for loss or gain after having agreed to accept a fixed payment;  Substitution of less expensive and equally effective services for more expensive ones, and moving people out of expensive services into less expensive ones as quickly as possible;  A package of benefits that is set and guaranteed;  Utilization management and review that tightly controls the delivery of services by health care providers;  Using market power to drive down supplier/provider prices and incentivizing providers to save money;  "Gatekeeping" via a Primary Care Provider (PCP), the point of access for the consumer and the individual who provides the consumer with coordination of services;  A fixed network of providers and suppliers; and  Quality safeguards, including reliability, appropriateness of services, consumer satisfaction, and positive service outcomes. "Managed care is, first and foremost, about costs," said Bergman. "It began in the private sector as a way of handling 11-12 percent health care inflation." "Managed care equals cost containment. And cost containment has become a euphemism for rationing," Bergman said. "Managed care will look different in a few years; it will become more about prevention and quality. I believe we will not go back to fee-for-service care; that's something we'll read about in history books." "Managed care is, first and foremost, about costs." In the United States, all managed care organizations experienced 26 percent growth in 1993. It is estimated managed care growth was 50 percent in 1995 and 86 percent in 1997. Managed Care Organizations Growth in the U.S. By 2030, more than 20 percent of the U.S. population will be age 65 or older. Medicare managed care trends show enrollment increasing from 3.1 million in December 1995 to 4.8 million in July 1997. Medicare risk contracts also are on the rise, from 181 to 287 in the same time periods. "By 2030, more than 20 percent of the U.S. population will be age 65 or older." Medicaid is also a big business, totaling some $400 billion annually. It accounts for more than 40 percent of federal and state taxes. The following chart details the shares various groups receive of the Medicaid pie: 1996 Medicaid The August 13, 1998, Chronicle of Philanthropy reported, "Competition from for-profit businesses is leading to major challenges for the non-profit world, as more and more companies offer services previously provided primarily by charities and government agencies. Businesses, often with the encouragement of government officials, are staking out territory in health care, education, social services, and many other areas." Bergman said some state agencies are increasingly becoming market purchasers of health care systems, rather than regulators and service administrators. Their alternatives are to limit eligibility and/or reduce services to citizens. Demonstration Programs in Oregon, Wisconsin, and Texas But other states are actively exploring ways to help ensure people with disabilities obtain health care in a timely and well-coordinated manner. Officials from Oregon, Wisconsin, and Texas offered looks at existing and new programs and another in the planning stages. Oregon has had managed health care providing acute and primary care for disabled and senior populations since 1992 via the Oregon Health Plan, a state Medicaid program offering medical, dental, mental health, and chemical dependency services at little or no cost for individuals or families meeting certain guidelines. Long-term care still is provided via fee for service, according to Doug Stone, State Department of Human Resources. Two years ago, the Wisconsin Department of Health and Family Services began studying ways to improve long-term care after realizing the state government spent more than a billion dollars a year paying for long-term care that people themselves cannot afford. In Texas, STAR+PLUS is a pilot project designed to integrate delivery of acute and long-term care services through a managed care system. Created in 1997, the program has enrolled 52,000 Supplemental Security Income and SSI-related aged and disabled Medicaid recipients in Harris County. Oregon also has had a social model for home and/or community based care in place since 1991. The result is fewer people in nursing homes receiving Medicaid payments. Approximately 75 percent of people who go into nursing homes stay there fewer than six months. Nursing homes in Oregon are becoming more residential or sub-acute facilities. Providers, advocates, consumers, health care professionals, and administrators are engaged in meetings to integrate/coordinate acute and long-term care. "The state government spends more than a billion dollars a year paying for long-term care that people themselves cannot afford." In Wisconsin, officials planned to combine long-term and acute care, but the disabled and senior communities were against the proposed plan, so the plan was redesigned, reported Dan Johnson, Wisconsin Department of Health & Family Services, and Barbara Bowers, University of Wisconsin-Madison. A new plan called Family Care is now proposed for consideration by citizens and their elected representatives. Its goals include:  "One-stop shopping" to learn about available services, housing, costs, and government benefits. Well-publicized Aging and Disability Resource Centers will give information and advice and help people sign up for programs.  A managed care organization that arranges and pays for all services.  Affordability. Everyone can use the local resource centers and care managers, whether or not government payment is needed. Everyone who is not poor pays what they can toward the cost of care. Taxpayers support services for people based on their level of disability and need for financial help. People with disabilities who want to work are enabled to do so by getting the support they need, while paying what they can for health and long-term care.  Prevention and timely intervention to reduce the need for care. Prevention is promoted by joint efforts of resource centers, care managers, service providers, and customers.  Assistance so people can make plans and decisions about how to stay (or become) more independent. Family care will make it possible for more people to live in their own homes or in other places where they and their families can continue to do as much by themselves as they are able.  Involving people who use services in decision-making, and reporting on the quality of care and information they get. Funds are channeled through local managed care organizations in a monthly payment for each person based on a level of need. Current Medicaid services will continue for people who don't qualify for or don't choose the new long-term care program. "In Texas' STAR+PLUS program, about half the enrollees are dually eligible (on both Medicaid and Medicare)," said Pam Coleman and Hope Morrison with the state Medicaid program. Participants may choose from three health maintenance organizations, which are involved in a cost-sharing arrangement; they can't make more than 5 percent profit. An enhanced prescription drug benefit is available for Medicare-eligible participants who choose the same HMO for both Medicaid and Medicare services. This project requires two Medicaid waivers (1915b and 1915c) in order to mandate participation and to provide home and community based services. The federal government approved the waivers in January 1998, and STAR+PLUS is mandatory as of April 1, 1998. One feature of STAR+PLUS is care coordination. Every new member has to have an assessment within 30 days, then a care plan is designed, if necessary. Many assessments are in-home, and care coordinators have uncovered significant poverty, poor nutrition, basic needs going unmet, and the need for primary prevention. Most of the care coordinators are registered nurses and social workers. Another feature of STAR+PLUS that may address some of these concerns is client advocacy. Three full-time advocates and another three who answer the phone lines are objective third-party advocates who represent the clients' interests and facilitate communications between the HMOs providers, and clients. "One benefit any state could offer would be making Medicaid funds available for non-Medicaid facilities, broadening choice for more people." HealthCare Matters!, a managed care education and training project funded through the Texas Planning Council for Developmental Disabilities, has assisted the Health and Human Services Commission in educating consumers about managed care. It also trained the HMO staff, including sessions for care coordinators on the needs of people with disabilities. "Assisted living facilities are very attractive to the well-to-do elderly," said Edie Walsh, Health Economic Research. One benefit any state could offer would be making Medicaid funds available for non-Medicaid facilities, broadening choice for more people. Roles of Independent Living Centers in Managed Care While states find ways to better deliver health care services, independent living centers (ILCs) are right beside them. ILCs are community based service and advocacy organizations directed for and by people with disabilities. In recent years, some centers have expanded their activities to include health care, along with wellness projects, health care advocacy programs, personal assistance services, home redesign consulting, technical advice to state managed care programs, as well as establishing their own managed care organizations. The challenge often is in balancing advocacy and services. "You don't appreciate good health until you have to use the health care system and you don't realize how out of touch the health care system is until you use it. People with disabilities use it all the time, and they know," said Owen McCusker with the Community Living Alliance (CLA) in Wisconsin. CLA is a new non-profit managed care organization (MCO), started with a grant from the Robert Wood Johnson Foundation. CLA was founded by an independent living center in a process that took more than four years, involving many people with disabilities and various interested community members. The MCO is paid on a capitated basis, serving Medicaid-eligible people with a nursing home-level of care. It is designed to be consumer directed, with 86 percent of the board members and 43 percent of management people with disabilities. Owen McCusker with CLA said it is very positive because people with disabilities have created their own system and are involved players. The downside is that it has been very difficult, going from operating a small independent living center that has fixed costs to a large one loaded with risk. In Maine, the 1.2 million population is mostly rural, and there is not a lot of managed care there, according to Dennis Fitzgibbons with Alpha One, an advocacy group. The state's Medicaid program is building a demonstration project for disabled and elderly people in three counties. Advocacy groups in Maine created a definition of medical necessity that has been adopted by the state. The definition of medical necessity includes:  services or products consistent with disability or condition;  appropriate and effective for disability and treatment of pain, illness, disease, or injury;  maintain or improve quality of life or minimize loss of function; and  preventive services that would avoid or minimize pain, illness, or disability. When managed care companies come to the state to do business, they will have to function under this definition. "People with disabilities have created their own system and are involved players." Fitzgibbons also described a utilization study involving 50 people with disabilities enrolled in a health maintenance organization (HMO) in Massachusetts. It showed savings of more than $2,000 per member per month using independent living services rather than HMO services. A health care advocate was assigned to each consumer to identify needs and set goals. The savings were realized primarily via home health care and prevention of secondary conditions. Costs were compared the year before the study, during the study and six months after the study. Even given the savings, the HMO was reluctant to stay with the program for fear of adverse selection. Officials said the numbers were too small to remain involved. The biggest business for Hawaii Centers for Independent Living's (HCIL) is in personal care referral. It was successfully involved with advocacy for two years with the state legislature, but three years later programs were cut following a downturn in Hawaii's economy, reported Mark Obatake. For the last six years, since the state Medicaid program went to a managed care program, HCIL has been involved with networking, technical assistance, and development, working with many individuals and trying to bring together as many people of cross disabilities. Right now it is developing strategies to support personal attendants and increase their availability, perhaps even unionize a group of them, because typically the job is low paying and has no benefits. Several years ago, a general survey of consumers statewide included questions about managed health care. Issues identified included:  access to provider networks on five different islands;  access to primary care physicians; and  enrollment problems. The state did listen to the concerns and asked HCIL for input when various issues came up. For example, to address enrollment problems, they came up with a worksheet to walk someone through the process. The MCO program in Hawaii has a discount medical program, using universally accepted care for $40/year, and a discount prescription plan. The Center for Independent Living for Western Wisconsin Inc. has served 12 counties since 1980. Karen Hodgson said, "around 1994, officials there concluded they needed to position for change. We got into managed care because we saw it as an opportunity to design a system the way we want it," she said, creating Wisconsin Partnership Program. This separate managed care organization will spin off within three years as a 5013 organization infused with an independent living center philosophy. Both groups will buy services from each other, so there will be a bond and they will benefit from each other. The MCO had to set up a solvency reserve of $225,000, and it must meet all regulations related to an HMO. She said consumers seem to be satisfied with the model; enrollment since May 1997 is 100. "We got into managed care because we saw it as an opportunity to design a system the way we want it." The board of Independence First in Milwaukee evaluated the possibility of having its own managed care organization but decided it should not be run through the independent living center. Lee Schulz said, "The feeling was their primary role is advocacy." There also was concern over losing consumer control. Concerns, Problems, Solutions A recurring theme in the Experts Meeting was the need to have a "voice" in health care planning and deliberations. Deliberately keeping the number of meeting attendees to 40 did indeed encourage the adding of all voices to a high level of discussion. Divisions The move toward segregated service systems drew much discussion. Managed care tends to divide populations, and demonstration projects across the country are fragmenting as well. People are placed in groups -- physical disability, children, mental retardation, elderly, etc. Advocates and providers tend to do this more than state agencies that sponsor health plans. Funding streams are compartmentalized by advocacy groups, creating vested interests and political barriers.  "Are carve out programs segregating people with disabilities?"  "And are these consistent with ADA? Are we sending mixed messages?"  "It's a dilemma; do we integrate into health care delivery systems rather than create specialized programs?"  "Programs need to be designed to go mainstream."  "But health care by design is also specialized for the general population."  "How do we steer demonstrations to be inclusive of all people rather than for disabled only or elderly only?" Training Consensus was strong that health care providers and planners need more education, but how best to approach changing the industry and medical education to prepare professionals for a new paradigm of care? The new paradigm should be directed at chronic care systems that have the ability to promote outcomes at clinical, functional, and quality of life levels. Providers, especially primary care physicians, are generally unprepared to handle some disabilities. Commercial health maintenance organizations should better train providers in handling certain disabilities. They also must comply with the Americans with Disabilities Act. One attendee suggested disability groups develop and sell training courses. "The new paradigm should be directed at chronic care systems that have the ability to promote outcomes at clinical, functional and quality of life levels." Another participant called for national disability leadership training in health care, managed care, and long-term care, to be funded by the federal government. Health plans, as a condition for doing business in the state, ought to be required to have their staff participate in training related to independent living concepts and the needs of people with disabilities. Consumers Consumers, too, need training. Basic communication venues for educating consumers about managed care must be found. "Web sites won't do it when many consumers don't have reliable telephone service," one participant pointed out. Consumers must be involved in governance and accountability roles (grievance boards, etc.) within health care organizations. The concern over the high level of poverty and lack of basic needs often found among people with disabilities prompted one participant, a social worker, to comment: "Most of these people do not know about the disabled organizations and the disabled organizations don't know them. Most are very poor and don't identify with mainstream organizations. Also, a lot of them are illiterate and some are alone; they're confused and frightened. The disabled community has a big job in finding these folks and pulling them in." Definitions The same language isn't spoken among providers and consumers. There is a need to standardize definitions, particularly "medical necessity" and "case manager." We have to bridge the traditional indemnity insurance culture with our culture, which has a medical necessity definition that's broader and includes rehabilitation, maintenance, etc. "Best practice" or "best model" scenarios for managed care and disability issues must be developed. Data Data = Difficulties. One can do a lot with claims or counter claims (also known as pseudo data), so concerned parties should look not just at what can be measured and evaluated, but also consider what appropriate outcomes should be. Managed care organizations do not want people with disabilities because they don't want high-cost people. The data does show that people with significant disabilities cost a lot more than typical employees. The issue is convincing health maintenance organizations that it is in their best interests to produce the data that allows HCFA and the states to risk adjust based on case mix rather than just discounting payments to HMOs. Independent Living Centers and Managed Care What is the role of disability organizations in managed care? Locally based disability organizations can act as patient advocates:  Learn what rights the federal and state government confer on patients.  Learn which service benefits people are entitled.  Learn how "medical necessity" is defined.  Target disabled managed care organization enrollees and help them understand how to play the managed care game, that "no" does not always mean "no" if you go up the chain of command.  Create disability support groups so that people can help each other. "What is the role of disability organizations in managed care?" An "incubator role" for independent living centers was suggested. "Avoid the 'either or' debate by promoting the role of ILCs as incubators of model managed care programs that are then expanded and mainstreamed into the broader system." If ILCs are not creating service models, who will? These organizations need to be involved in developing health plan quality indicators that are responsive to the needs and concerns of people with disabilities. ILCs need to work with state agencies and others in developing standards for quality indicator disclosure. "If ILCs are not creating service models, who will?" A potential strength of managed care is to improve quality of care through expecting providers to deliver appropriate care. This currently includes things like immunizing their members, having the appropriate eye exams for diabetes, cancer screenings such as mammograms and pap smears. ILCs could develop -- and perhaps market -- clinical protocols appropriate for persons with disabilities, such as routine evaluation of mobility equipment or identification of whether the consumer is aware of other services. These protocols would be disseminated to primary care providers, preferably as part of an electronic system. ILCs could provide, for a fee, case management for states for people with disabilities in managed care organizations. Or they could contract as evaluators of health plan readiness to serve people with disabilities with regards to things like ADA compliance and network capacity (primary, specialty, ancillary care). Some ILCs have or are considering their own MCOs. How will ILC-sponsored MCOs be positioned when states decide to make SSI disabled individuals mandatory Medicaid managed care customers -- as is the growing trend? Will these plans be able to compete? Or will they be ignored? "If an ILC wants to successfully have an education and advocacy role related to health care they need to become educated about issues, language, etc. from the providers' point of view as well as the consumers." Attendees raised conflict of interest concerns among board members or employees, but it was noted that since the organizations are separate, there are no legal or economic conflicts, although someone could find a moral conflict. ILCs will need ongoing technical assistance to develop expertise in:  training of MCO case managers in IL principles and cost- efficient ways to deliver services;  reviewing MCO contracts to assure services and grievance procedures;  organizing consumers of MCO services to advocate for better services;  identifying community services to get people out and keep them out of institutions; and  providing community-based attendant services in a managed care environment. If an ILC wants to successfully have an education and advocacy role related to health care they need to become educated about issues, language, etc. from the providers' point of view as well as the consumers'. They need to understand that, at least with the managed care population, providers and HMOs not only are not clamoring to serve these folks, they are often actively trying to avoid serving them. Acute and Long-term Care A rationale for combining or integrating acute and long-term care is that it will allow for money to go into community based services. But almost no Medicaid money goes into community based services. Can integration really change that? We have not defined a benefit package. Traditional HMOs address only primary and acute care. People with disabilities who require long-term support are not receiving those benefits now; should they? If so, how do you pay? An MCO usable definition and protocol that separates long-term care and medical needs should be developed. Risk "I believe resources are going to dwindle rather than become more abundant. How do we respond?" If we are to have a market-based health care system, we have to solve the risk competition/adverse risk adjustment problem. In cases where personal care and other services are being "medicalized" because of delegation issues, we must develop negotiated risk contracts as is becoming more common in assisted living. Design and implement actuarial research focused on specific preventative services to show results. A risk-adjusted health plan payment that adequately captures the higher-than-average health care needs of people with disabilities is needed to induce mainstream health plans to serve people with disabilities. This also will minimize the need for separate systems for people with disabilities. The reimbursement bureaucracy dictates how services are developed. Service Development What are the incentives for health delivery systems to serve enrollees? A system must be market driven. If consumers become purchasers of services (rather than recipients), then markets will develop services based on what consumers want to purchase. "I am finding that insurance case managers are basically nurses who are conduits to the insurance physician reviewer. I still have to call different people to find out preferred vendors, benefits information, etc. My concept of case manager is someone who has a holistic view of the case and who is a 'one-stop' contact to answer all questions." Think outside the box and begin to experiment with alternatives to managed care. Develop protocols for services for persons with disabilities for managed care settings and find ways (legislation) to ensure implementation. Develop and fund an "Institute for Quality Design," with the mission of redefining and centering the definition on the quality outcomes people want/need and link them to the system performance characteristic that promote those outcomes. Attendees also wondered if innovative long-term services will transform into something that is over-structured and over-institutionalized, such as assisted living. Managed Care More programs that replicate the experience of ILCs in forming their own MCOs to provide services to persons with disabilities are needed. This would involve getting states to go to the federal government to fund these programs. Oregon used case workers from Medicaid and long-term care systems to explain managed care options and do the enrollment. Part of the rationale was because of a) familiarity with SSI population and b) advocacy orientation of those workers. Although imperfect, this approach is working. An advocacy group could provide this service. Passage of a Consumer Bill of Rights for Health Care that requires all health care organizations to offer comprehensive information and referral, counseling and case management services is needed. This will send MCOs looking for and paying for services from organizations like ILCs. Full compliance with ADA among all health care providers and insurers is necessary. Advocacy for Quality The disabled community needs to become more involved in mainstream efforts, such as those of the National Commission on Quality Assurance.  Disability organizations should work on development of quality "outcomes" measures in heath care/long-term care with NCQA and the American Association of Retired People through employer groups and state/federal purchasers.  An advisory/ombudsman committee to work with individual HMOs and enlist or regulate support is needed.  All health care providers should be mandated to pay 5 percent of all income into an advocacy pool.  A sound definition of an acceptable "independent" advocacy function within health care is needed. A recurring theme in the managed care/disability discussion was the need to have a "voice" in the deliberations. This was juxtaposed against the sense that disability was often "not on the radar" of the larger managed care concerns. While not a direct solution, one attendee said much can be gained by building coalitions to constituencies beyond the disability community, in particular, to those struggling with health care issues and income inequality issues among Americans generally. There are common concerns regarding access and equity that need to be addressed and much intersection between disability and poverty in the United States. Next Steps Attendees had no shortage of answers to the question "Where do we go from here?" generating valuable information and ideas. To move forward, all of the suggested solutions collected at this conference should be prioritized and earmarked for development, one attendee said, suggesting participants from the Experts Meeting and other solicited people form task forces for implementation. Clear goals should be formulated and work started to implement those goals. Getting Together More meetings were suggested, both face-to-face forums and teleconferences, including meetings with managed care organizations at venues where they congregate (because "we should spend more time converting rather than preaching to the converted"). Also, meet with state Medicaid people to convince them to require health maintenance organizations and managed care organizations they contract with to provide services needed for people with disabilities and to provide policies and procedures that addresses their needs. Agendas should be designed with a more in-depth look at analyzing what has been learned from existing/past demonstration models, advocacy strategy, and successful disability-related managed care legislation changes at the state levels. It might be useful to focus on narrower areas, including models of consumer involvement in managed care, consumer protections, a mechanism in design and in reality, and potential additions/alternatives. Invitees considered including a representative or presenter from a regular MCO, along with a representative from each state's Medicaid commission, state and federal legislator, and all of the stakeholders at the national level, including disability leaders/advocates, health plan representatives, purchasers (private and public), regulators, and accrediting bodies ("so we can learn through them how better to present our case/fight our battle"). Getting It in Writing Commission a monograph that describes the experience of innovative programs and their characteristics and scope of services, then coordinate production of the monograph with Research and Training Center on Managed Health Care and Disability's Research Project 5. Take a consensus position if possible and develop white papers that can be disseminated to policy makers. Synopsis of any kind of consensus on health care issues should be shared with legislators. The summaries of the last meeting and this meeting should be sent to all independent living centers and to other disability related organizations. Comments back from the non-participants should be compiled and sent to participants. Develop and issue a basic set of guidelines for health plans for quality and health care professional organizations on issues related to people with disabilities. Getting Wired Attendees want to see internet dialogue via a web site and/or a list serv. How about a Bob and Lex talk show on National Public Radio, modeled after "Car Talk!?" Getting Data There were calls for funding and rigorous research on:  Status of people with disabilities in MCOs compared to people without disabilities in MCOs and compared to people with disabilities in other types of health care plans.  The effect of independent living services on health maintenance and prevention of secondary conditions.  Compliance with the Americans with Disabilities Act among MCOs.  Longitudinal research on outcome measures.  More direct consumer feedback from existing Medicaid managed care programs, to see how people are faring in different models. Getting Assistance to the Consumer Work needs to start to establish a strong cross-disability coalition for advocacy for public policies in health care (not just managed care). Public policies need to address inclusion; Accommodation of disability; Outcome measure development meaningful to people with disabilities; and Creation of a quality oversight mechanism at the national level. Managed care organizations need training to handle disability-related concerns. Funding is needed for an independent ombudsman to assist people in public health systems to resolve grievances. ILCs and other disability advocacy groups at the local level could develop models for MCO patient advocacy on behalf of people with disabilities, so disabled people could learn how to be effective MCO participants. Publicly funded medical service systems could use a voucher mechanism to be used by members of health plans for long-term care. About ILRU The Independent Living Research Utilization program (ILRU) was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the United States. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at The Institute for Rehabilitation and Research (TIRR), through which is conducted a comprehensive and coordinated set of research, training, and technical assistance projects focusing on leading issues facing the independent living field. ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free standing comprehensive rehabilitation facility for persons with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. TIRR is part of TIRR Systems, a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the United States and Canada. For more information, contact ILRU, 2323 S. Shepherd, Suite 1000, Houston, Texas 77019, (713) 520-0232 (Voice), (713) 520-5136 (TTY). About the Research and Training Center on Managed Health Care and Disability The National Rehabilitation Hospital Research Center in Washington, D.C., and the Independent Living Research Utilization (ILRU) program in Houston, Texas, have been awarded a five-year Research and Training Center on Managed Health Care and Disability (RTC-MHC&D) by the National Institute on Disability and Rehabilitation Research in the amount of $2.5 million. The new Center commenced June 1, 1997. The purpose of the Center is to provide national leadership on the major health service and health policy issues facing consumers with disabilities in managed health care arrangements. The Center conducts research; prepares special policy analyses; hosts forums for discussion; presents expert testimony to Congress, and governmental agencies; publishes in health policy, consumer and trade literature; trains graduate students with disabilities in health services research; and disseminates findings to the diverse consumer, provider, payor, academic, and policy making audiences. It seeks to serve as a catalyst in the nation's capital and at the state level for the development of new ideas that will make managed care and the larger health care system more responsive to the needs of people with disabilities. The Center benefits from an array of organizations that participate in one or more Center activities. They include: the University of Houston's Health Law and Policy Institute, Georgetown University's Graduate Program in Public Policy, the Shepherd Care Network, the Oregon Developmental Disabilities Council, and United Cerebral Palsy Associations. Additionally, the National Committee on Quality Assurance and the Consumer Assessment of Health Plans Study have agreed to support the Center and incorporate its findings into their work. The Center on Emergent Disability at the University of Illinois at Chicago The Department of Disability and Human Development (DHD) at the University of Illinois at Chicago's College of Health and Human Development Sciences received funding to establish a Center on Emergent Disability. The Center is funded by the federal government's National Institute on Disability and Rehabilitation Research with a $1.1 million three-year grant. The Center is predicated on a broadly conceived research effort across many disciplines and constituencies. It is based at the DHD with collaborating research task forces at major medical and disability centers in the United States including UIC, the U.S.C. Children's Hospital and Rancho Los Amigos Medical Center in Southern California, Georgetown University Medical Center in Washington, D.C., and Baylor College of Medicine in Houston. Researchers are also involved from Vanderbilt University, the University of Minnesota, and Northern Arizona University. Seven core activities will be pursued by the Center: 1.Secondary analyses of national and state-level data sets to establish trends in the prevalence of disability; 2.The canvassing and sampling of state and local public health surveillance systems to analyze etiologic trends in disability; 3.Evaluation of the efficacy of extant national and state-level data sets for disability surveillance; 4.Identification of key emergent disability trends and their comparison across regions of the nation; 5.National study of state surveillance systems; 6.Assessment of needs, analysis of policy implications, and development of a research agenda for the nation; and, 7.Disseminating research findings and facilitating a national dialogue on emergent disability through a program of formal publications, information, electronic media, policy forums, and two national conferences. For further information, contact the Center's Principal Investigator, Dr. Glenn T. Fujiura, Assistant Professor of Human Development, DHD at (312) 413-1977; Professor David Braddock, Head of DHD and Co-Principal Investigator of the Center at (312) 413-1647; or Professor Gary Albrecht, Professor of Health Policy and Administration and Human Development and Co-Principal Investigator at (312) 996-5765. Miriam Hertz, project coordinator, can be reached at (312) 996-2091. You may access their web site at http://www.uic.edu/depts/idhd/emer-dis.html. Participants at Experts Meeting on Managed Care Mike Auberger Executive Director Atlantis Community Inc. 201 S. Cherokee St. Denver CO 80223 Allan Bergman United Cerebral Palsy Assoc. Inc. 1660 L Street, NW, Suite 700 Washington DC 20036 Mary Ann Board Case Manager TIRR (The Institute for Rehabilitation and Research) 1333 Moursund Houston TX 77030 Barbara Bowers The University of Wisconsin 2728 Gregory St. Madison WI 53711 Pam Coleman Texas Department of Human Services P.O. Box 149030 Austin TX 78714-9030 Pamela J. Dautel Research Coordinator ILRU (Independent Living Research Utilization) 2323 South Shepherd, Suite 1000 Houston, TX 77019 Gerben DeJong Director NRH Research Center 102 Irving St., NW Washington DC 20010-2949 Mary Faithfull Advocacy, Inc. 7457 Harwin, Suite 100 Houston TX 77036 Dennis Fitzgibbons Alpha One 127 Main St. South Portland ME 04106 Marty Ford Assistant Director The Arc 1730 K Street, NW, Suite 1212 Washington DC 20006 Lex Frieden Senior Vice President TIRR (The Institute for Rehabilitation and Research) 1333 Moursund Houston TX 77030 Glen Fujiura Director Center on Emergent Disability Department of Disability and Human Development/Research University of Illinois at Chicago 1640 W. Roosevelt Road Chicago IL 60608-6904 Marj Gordon RRTC in Community Integration for Individuals with SCI Baylor College of Medicine 1333 Moursund, Room B-107 Houston TX 77030 Ellen Grabois Center for Research on Women with Disabilities Baylor College of Medicine 3440 Richmond Ave., Suite B Houston TX 77046 Mary Harahan Deputy to the Deputy Assistant Secretary for Disability Aging and Long-Term Care Policy Department of Health and Human Services Hubert H. Humphrey Building, Room 424-E 200 Independence Ave., SW Washington DC 20201 Linda Herson RRTC in Community Integration for Individuals with SCI Baylor College of Medicine 1333 Moursund, Room B-107 Houston TX 77030 Karen Hodgson Independent Living for Western Wisconsin 2240 East Ridge Center Eau Claire WI 54701 Beverly Jimmerson Texas Health Quality Alliance 6210 E. Highway 290 Austin TX 78723 Dan Johnson Director Office for Persons with Physical Disabilities P.O. Box 7851 Madison WI 53707 Bob Kafka Director ADAPT of Texas 1339 Lamar Square Drive, Suite 101 Austin TX 78704 June Kailes Disability Policy Consultant 6201 Ocean Front Walk, Suite 2 Playa del Rey CA 90293-7556 Barrett Markland Advocacy, Inc. 7800 Shoale Creek Blvd. Suite 171E Austin TX 78757 Owen McCusker Community Living Alliance 1310 Mendota St. Madison WI 53714-1039 Hope Morrison Health and Human Services Commission 4900 N. Lamar Austin TX 78751 Margaret Nosek Center for Research on Women with Disabilities Baylor College of Medicine 3440 Richmond Ave., Suite B Houston TX 77046 Mark Obatake Hawaii Center for Independent Living 414 Kuwili St., Suite 102 Honolulu HI 96817 Janet O'Keeffe American Association of Retired Persons 601 E Street, NW Washington DC 20049 Mike Oxford Executive Director Topeka Independent Living Resource Center 501 Southwest Jackson, Suite 100 Topeka KS 66603 Lee Schulz Independence First 600 W. Virginia, Suite 301 Milwaukee WI 53204 Laurie Sitton Independent Living Resources, Inc. 4506 S.E. Belmont, Suite 100 Portland OR 97215 Doug Stone Department of Human Resources Senior and Disabled Services Division 500 Summer St., NE Salem OR 93710-1014 Peter Tropman The Management Group 217 S. Hamilton St. Madison WI 53714 John Tschida NRH Research Center 102 Irving St., NW Washington DC 20010-2949 Gary Ulicny Shepherd Center 2020 Peachtree Road, NW Atlanta GA 30309 Linda Velgouse The National Council on Aging Inc. 409 Third St., SW Washington DC 20024 Edith Walsh Health Economic Research 411 Waverly Oaks Road Waltham MA 02154 Bob Williams Deputy Assistant Secretary for Disability Aging and Long-Term Care Policy Department of Health and Human Services Hubert H. Humphrey Building Suite 424-E 200 Independence Ave., SW Washington DC 20201 Hale Zukas Policy Analyst World Institute on Disability 510 16th St., Suite 100 Oakland CA 945512-1500 Empowerment in Managed Health Care: People with Disabilities in a Changing Health Care Environment Introduction The "Empowerment in Managed Health Care: People with Disabilities in a Changing Health Care Environment" conference was held in Houston, Texas, on March 1-2, 1998. The approximately 80 conference participants represented many of the leaders in the disability community from across the country. The purpose of the meeting was to examine the dynamic components of the managed care approach to health care from the viewpoint of people with disabilities, and to develop recommendations and a plan for action to insure that the healthcare needs of people with disabilities are appropriately met. The meeting was a project of the Independent Living Research Utilization Program (ILRU), the Rehabilitation Research and Training Center of Community Integration for Individuals with Spinal Cord Injury at Baylor College of Medicine and TIRR (The Institute for Research and Rehabilitation), and the Research and Training Center on Managed Health Care and Disability at the National Rehabilitation Hospital Research Center. The Research and Training Centers are funded by the National Institute on Disability and Rehabilitation Research. Additional support for the meeting was provided by the Robert Wood Johnson Foundation, the Rehabilitation Research and Training Center on Community Integration for Individuals with Spinal Cord Injury at Baylor College of Medicine and TIRR, and the Training Center on Independent Living Center Management and Services at ILRU Format of Conference Prior to the conference, invitees received articles about the managed health care issues facing people with disabilities. They were asked to indicate their preferences for participation in one of five workshops at the time they registered for the conference. The workshops were titled:  Governing principles for managed health care from a disability perspective  Consumer rights, protections and responsibilities  Consumer health-plan decision making and health-plan accountability  Medicare and Medicaid managed care  Making managed care work for people with disabilities Most of the time for the conference was spent in small-group sessions. Each group was assigned a facilitator and a recorder to provide leadership and accurate documentation of the discussions. Specific questions were developed for each of the workshops to guide the groups' processes and stimulate discussions of key issues. One aim was to produce action-oriented recommendations and implementation strategies for the disability community to use to insure access to and utilization of appropriate healthcare services. Each group's report was summarized and combined with the others, and can be found in the following sections of this report. Recommendations Health is not merely the absence of disease, but good quality of life. More and more, consumers are demanding informed choice and control in their health care. There has been much change in medical services and insurance. You can't count on your doctor to be your advocate anymore; you have to be your own advocate. Many health providers and facilities seem to have no interest in making a long-term investment in a patient. A consumer must accept personal responsibility in this situation -- responsibility for protecting and maintaining one's own health and responsibility for becoming educated about healthcare services and providers. Consumers also need to learn about and understand healthcare systems, including very basic information about insurance and about managed care. Basic information includes - What is insurance? How is it used? How is the system accessed? What is a consumer's responsibility? Information about managed care includes - What is the new system? How does it work? Who has what role? Where does the power lie, or who has power to shape individual decisions? When presented, information has to be simple and understandable. There is a need to standardize language across plans and states, so accurate comparisons can be made. Some of that standardization includes basic definitions of such terms as "good health," "function," "prevention," "medical necessity," "wellness" and "maintenance." The State of Maine, for example, has created a definition of medical necessity that includes services or products consistent with disability or condition; appropriate and effective for disability and treatment of pain, illness, disease or injury; maintain or improve quality of life or minimize loss of function; and preventive services that would avoid or minimize pain, illness or disability. Additionally, consumers need clear, detailed information about specific plans, including benefits, costs, limitations, exclusions, referrals and access to specialists, wellness services, prevention and management of secondary conditions, access to medical records, the appeals process and risk-sharing arrangements with providers. Disability is a natural part of the human experience that in no way diminishes a person's right to fully participate in all aspects of life. People with disabilities need special information regarding providers: - How well a plan covers a category of disability impairment needs, such as paraplegia cerebral palsy, multiple sclerosis, etc. - Does the plan have a disability accommodation specialist? - Which facilities provide services that meet universal accessibility guidelines? - Does the plan have provisions for personal assistance or long-term supports such as respite care or home modifications? - What are the enrollment and disenrollment rates of people with disabilities? - What are rates of disapproval of specialized assistive technology, durable medical equipment, supplies, etc. - What is the continuing education program for providers, especially for topics relevant to disability? - What is the mortality rate for people with disabilities under this particular plan? The Health Care Financing Administration needs to require provision of data appropriate for disability by plan for compliance ratings for the Americans with Disabilities Act and all other non-discrimination laws and accessibility codes. HCFA should not permit contracts for Medicare and Medicaid without National Committee for Quality Assurance accreditation for disability provisions. The information should be collected by independent and qualified entities, and reported to state insurance commissions. Information on physical accessibility of providers and facilities should be provided at enrollment. It would be even better if providers and facilities were not allowed to be accredited unless they met Americans with Disabilities Act requirements. While every plan has an obligation to comply with existing federal and state laws, it can be difficult to get other information -- such as does the physician's office have adjustable examination beds or similar features -- in advance of making plan and provider decisions. Upon request, information should be provided about program access and the means for receiving auxiliary aids and services and for making reasonable modifications to the rules. All healthcare consumers ought to have access to an independent ombudsperson and/or a training and information service to receive assistance or referrals to resolve a perceived issue of improper care or treatment. This office should have no financial tie or obligation to the health plan or provider, and should collect data on issues that can be used for systemic review or change. Consumer advocates also need detailed information on health plans. Healthcare plans and systems should contribute funds to help train both consumers and advocates to navigate the system. Special care coordinators could help high-risk patients; this more efficient and faster maneuver would result in the HMO system saving money. All individuals have the right to accessible, universal, high quality health care, regardless of ability to pay. Who should pay? What's equitable? Finances and access are linked. By definition, people with disabilities are at the high-cost end of the spectrum, and it is true that certain sub-sets of people with disabilities require more expensive care. But most cost data is based on institutional, not individual, models. Prevention is cost effective. A new definition of cost is needed, one that considers all ramifications. Should a patient receive more expensive rehabilitation services or should the patient be sent to a nursing home, where infections, pressure sores and other secondary conditions threaten, ultimately raising expenditures? Making money and providing high quality healthcare are not mutually exclusive. People with disabilities must make creative recommendations, and look harder at the short- and long-term benefits of providing thoughtful and appropriate care. Better short-term investments do save money over the long run. Upon request, consumers should be able to obtain from the providers and health plans disclosure of all financial arrangements (profits, incentives, bonuses and withholds) between a specific provider and a health plan in order to assess the impact of these arrangements on treatment choices. Actual costs of procedures and costs of alternative treatments that have clinical validity should be provided upon request to the consumer. Medicare and Medicaid ought to provide the same things as any healthcare plan should: a choice of providers, access to specialists, accessible and timely grievance procedures and outside advocates to help consumers. Consumers should participate in reviews. Medicare and Medicaid should allow for services that increase independence, including personal assistants, durable medical equipment and home modifications. Medical necessities should promote physical, mental and behavioral health. Prevention and up-front expenditures for critical high-priced services should be paid, to avoid higher future expenditures. Health Care Financing Administration and state Medicaid agencies need consumer-driven services, rather than medical model services. In their requests for proposals, they should require cultural sensitivity, impose minimum federal standards, establish a process of contracting with an ombudsperson or outside advocate, adhere to the Americans with Disabilities Act and ensure the health maintenance organization networks include providers with experience with people with disabilities. To ensure health plans compete on price and quality, not price and risk, federal and state agencies should involve consumers in the beginning of the decision-making process with the design and development of enforceable standards. Current decisions are made by Health Care Financing Administration representatives and state Medicaid directors; consumers and/or advocates should be added to this group. Good quality healthcare benefits all of society. Services should be based on the needs of individuals, not their benefit to the insurer, and should maintain the overall health and well-being of individuals. A health plan should have a procedure by which an enrollee with a disability or chronic condition that requires specialized medial care over a prolonged period of time may receive referral to a specialist with expertise in treating the individual who shall be responsible for, and capable of, providing and coordinating the enrollee's primary and specialty care. All consumers must have the right to a wide choice of healthcare providers. This can be met by offering consumers a single plan that includes a point-of-service option, or by giving consumers a choice of healthcare plans. If consumers are offered only one closed panel plan, they also should be offered a point-of-service option. Specialists need to be the primary care provider for people with disabilities. Some experimental models for this already exist, including the ABC model in Ohio. Current research done by Sherry Tepper shows a survey of 500 women with multiple sclerosis who had neurologists as their primary care physicians were more satisfied with their health plans. Sometimes people with disabilities need more than one specialist. Closed panel health maintenance organizations should be required to offer patients the option of going outside the network if the HMO does not have a specialist to provide a service that is included in the plan's benefit package, at the in-plan rate. Consumers should have the right to choose a point-of-service option in order to enable them to receive services from providers of their choice when they believe the provider(s) within the plan cannot provide services to meet their needs. A limit on the percentage of costs the consumer who uses this option must pay out of pocket is practicable. Emergency services should not be limited to those services only provided in emergency rooms but should also be defined as substance abuse and psychiatric services that are necessary whenever an individual is in need of them. Direct access to these types of emergency services are often preferred by consumers with behavioral or psychiatric health concerns because of the stigma attached to asking for help and disclosing need. If the managed care system doesn't work for people with disabilities, it's not going to work for anyone. Coordinating their own care is a good opportunity for people with disabilities to show they can manage long-term care services in a cost-efficient manner. California consumers have elected to have personal assistance and home care services designated as "non-medical." A better classification is "social community services." The medical community needs to look at acute care in the framework of long-term and chronic care. Managed care systems need to be willing to spend the same amount of money in home-based services as in nursing homes. Acute care can be given within the framework of chronic care. Medical and long-term services are closely linked on the public side, given the fact that Medicaid currently delivers a huge majority of long-term and home-based care services. This and the move toward increased managed care in the public sector means these services should be appropriately shifted over to the social/independent living mode, as opposed to the medical mode, and covered by managed care benefits. Plans should be required to extend services to all areas of the state and should accommodate needs of rural residents, including hospital to rural community transition discharge plans, family stay provisions during acute hospitalization, provisions for telemedicine and tele-patient education, support for transportation for care when needed, reimbursement for family members when there are no alternatives because of distance, and providers actually located in or having frequent scheduled visits in small towns. A simple, understandable, timely appeals process should be in place. Consumers should have the right to appeal any benefit decisions, including denial of services, withholding of experimental or investigational treatments, forced or unwanted treatments or any other rights specified in the Consumer Bill of Rights and Responsibilities. The external appeals right should not be limited to benefit denials based on medical necessity. A separate appeals process for non-medical complaints, such as refusal to disclosed conflict of interest or other aspects of plan design, is necessary. Consumers shall have access to services that are functionally equivalent to, and not more expensive than, covered benefits. If a plan accepts this concept, it would be obligated to provide a service not in its package but considered equally effective as a covered benefit. Denials of functionally equivalent services should be subject to external appeal. In order to strengthen the consumer's role in managed care decision making, all plans should seek opportunities for consumers to become meaningfully involved in the governance of their plan, including consumer participation on boards of directors, advisory boards, internal appeals boards, policy boards and other entities that assist in plan decision making. Nothing in the Consumer Bill of Rights and Responsibilities should be construed to invalidate or limit rights, remedies and procedures of any federal civil rights law or any civil rights law of any state or political subdivision of any state or jurisdiction that provides greater or equal protection. Further Study and Discussion Can a managed care program be consumer-controlled and still be managed care? Indeed, is there any managed care organization that can accommodate consumer control? The majority of participants indicated the conference exceeded their expectations, that they had obtained information they could use, and that the conference provided a framework for important dialogue among people with disabilities related to health care. Most agreed it was important to set clear goals to place specific issues on the national agenda. As in any good discussion, several issues arose that bear further study:  The Consumer Bill of Rights and Responsibilities of the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry has been introduced in Congress. Should this bill become law, what steps will be taken to implement it in a way that guarantees all Americans enforceable consumer protections? How much funding will be available for consumer education and assistance in implementing the Consumer Bill of Rights, and in enforcing it?  Do consumers have the right to know the real costs of their health care? If we demand an accounting of true costs, we may begin to equate cost with quality. How does this information help us make an informed decision?  Is risk adjustment as effective as it is suggested to be? Who benefits? Who gets the adjusted dollars? Accountability must be placed on the risk adjustment system to justify the stated high costs for people with disabilities.  How can people with disabilities on Social Security income become enabled to pay for personal assistance and other necessary services?  The Consumer Bill of Rights does not adequately address the gatekeeper issue from the disability perspective. All patients are required to see primary care physicians in order to receive a referral to a specialist, but often, for persons with disabilities, a specialist is more qualified to provide both primary and specialty care, or make referrals, if necessary.  Consumers must not be discriminated against based on many things, including source of payment. A provision of the Consumer Bill of Rights does not adequately address the issue of physicians refusing to serve Medicaid patients.  Types of referral plans used by managed care plans differ. There should be a review of all the plans to determine what works best for people with disabilities. Also needed is a review existing models to see if there is a cost-benefit advantage.  There are concerns over the distinction between privacy and confidentiality. Ethically, all health care information should be private; confidentiality means sharing with approved sources. This distinction is of concern for patients with behavioral health issues, who sometimes do not wish to have visits transcribed in their medical records, which may then become available to others. Often, these individuals will prefer to pay out of pocket to keep the visit private.  Treatment protocols need to be developed so they list additional considerations for people with various disabling conditions. For example, in treating a broken bone for some with quadriplegia, there should be some mention of stabilizing and not casting -- since such a patient does not need to be able to walk on a cast or is expected to walk following treatment -- in order to prevent development of pressure ulcers.  How can holistic remedies enhance healthcare?  A patient has the right to refuse treatment if he/she is considered by law to be competent. Who is considered qualified to render decisions when an appeal is made? Should consumers be involved on appeal panels?  How does a consumer appeal whether a benefit is covered or not? For example, a plan may cover durable medical equipment but not include a scooter. It becomes an issue of benefits that offer the consumer the functional equivalent to a "covered" benefit.  What are the societal consequences if health are is not provided equitably? Action Strategies Without adequate, appropriate and accessible health care, anything designed to promote individual independence and community integration of people with disabilities likely will result in less-than-optimal outcomes. In order to address the issues summarized in the Recommendations and Further Study and Discussion sections of this report, a number of specific action strategies were developed within the small workshop groups. These include:  National data about healthcare experiences of people with disabilities.  A study whether financial incentives can increase the provisions of appropriate services and supports, improve health status and result in consumers who are more satisfied with their healthcare. Likewise, will sanctions decrease withholding of appropriate services and supports and results in less satisfactory health status and dissatisfied consumers?  A study of the elements of an effective quality assurance and quality monitoring program.  Development of advocate networks in the most at-risk populations, including people living in poverty, ethnic minorities, non-English-speaking people and people who are illiterate or semi-literate. Advocates need training in a basic level of knowledge surrounding managed care.  Medical and allied health professionals, durable medical equipment providers, researchers, long-term care providers and others to meet with the consumer community, especially in conferences such as "Empowerment in Managed Health Care."  Consumers with disabilities to build alliances with children's, aging and mental health advocacy and consumer groups. All should have representation at each other's meetings.  Development of strategies to support natural networks in a community.  Exploration of a possible coalition with self-employed and independent business groups. There are nearly as many people with disabilities who report they are self-employed as work for federal, state and local governments combined. The National Association of Self Employed, for example, is working to improve the tax deduction for health for self-employed individuals to put it on par with the deduction for corporate employers and individuals. The National Federation of Independent Business is another good possibility for any joint venture.  A healthcare coalition built by The Consortium of Citizens with Disabilities.  Expressions of support for the work of National Center for Medical Rehabilitation Research, National Institute on Disability and Rehabilitation Research, Consortium of Citizens with Disabilities and National Center for Health Statistics.  Literature reviews and research plan drafts from the Research and Training Center on Managed Health Care for People with Disabilities as they develop. RTC research can help frame the issue, clarify alternatives, assist in analyzing costs and benefits, establish consensus on objectives, evaluate impacts and more.  Investigation of creative alternatives, such as telemedicine or itinerant services, to traditional delivery and access models that allow increased choice and efficiency.  Hire professional communications experts to package the message of inequity in healthcare delivery to the public and some very important specialized audiences, such as the American Medical Association. We have a tradition of helping each other and our neighbors, and we need to build on and continue that tradition. The message will recognize personal benefits and the long-term community value of considering the needs of each other.  Other products like fact sheets, articles and glossaries about managed care written in simple, understandable language; articles and resources that clarify and identify Medicare and Medicaid terminology; videos and other creative materials that explain healthcare needs of people with disabilities, such as "When Billy Broke His Head;" and press packets that quickly respond to or report on local and state managed care activities.  Exploration of legal and legislative strategies for holding managed care organizations liable for poor medical decisions It is important to acknowledge the positive. One benefit of getting involved in the managed care system is to create a system that permits getting a handle on the medical services system that did not exist in the fee-for-service system. All of this research and work will result in people with disabilities being well-informed consumers of managed care medical programs. Appendix Consumer Bill of Rights and Responsibilities About ILRU The Independent Living Research Utilization program (ILRU) was established in 1977 to serve as a national center for information, training, research and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the United States. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at The Institute for Research and Rehabilitation (TIRR), through which is conducted a comprehensive and coordinated set of research, training and technical assistance projects focusing on leading issues facing the independent living field. ILRU is a program of TIRR, a nationally recognized, free-standing comprehensive rehabilitation facility for persons with disabilities. Since 1959, TIRR has provided patient care, education and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the United States and Canada. For more information, contact ILRU, 2323 S. Shepherd, Suite 1000, Houston, Texas 77019, (713) 520-0232, 520-5136 (TDD). About the Research and Training Center on Managed Health Care and Disability The National Rehabilitation Hospital Research Center in Washington, D.C., and the Independent Living Research Utilization (ILRU) program in Houston, Texas, have been awarded a five-year Research and Training Center on Managed Health Care and Disability (RTC-MC&D) by the National Institute on Disability and Rehabilitation Research in the amount of $2.5 million. The new Center commenced June 1, 1997. The purpose of the Center is to provide national leadership on the major health service and health policy issues facing consumers with disabilities in managed health care arrangements. The Center conducts research; prepares special policy analyses, hosts forums for discussion; presents expert testimony to Congress and governmental agencies; publishes in the health policy, consumer, and trade literature; trains graduate students with disabilities in health services research; and disseminates findings to the diverse consumer, provider, payer, academic, and policy making audiences. It seeks to serve as a catalyst in the nation's capital and at the state level for the development of new ideas that will make managed care and the larger health care system more responsive to the needs of people with disabilities. The Center benefits from an array of organizations that participate in one or more Center activities. They include: the University of Houston's Health Law and Policy Institute, Georgetown University's Graduate Program in Public Policy, the Shepherd Care Network, the Oregon Developmental Disabilities Council, and United Cerebral Palsy Associations. Additionally, the National Committee on Quality Assurance and the Consumer Assessment of Health Plans Study have agreed to support the Center and incorporate its findings into their work ABOUT "LEGAL PROTECTIONS FOR PEOPLE WITH DISABILITIES" A RESEARCH PROJECT OF THE RTC ON MANAGED CARE For those who must have symmetry and are wondering why 'How to Address Problems Encountered in Managed Care" is a part of this teleconference let us offer you an explanation in advance. The National Institute on Disability and Rehabilitation Research (NIDRR) funded the National Rehabilitation Hospital Research Center (NRH-RC) and the Independent Living Research Utilization (ILRU) in 1997 for five years as a Research and Training Center on Managed Health Care and Disability (RTC-MC&D). Through one of the projects of the RTC, "Legal Protections for People with Disabilities," we are studying the experiences of people with disabilities in managed care arrangements that result in complaints being registered and/or litigation. We are doing this by (1) tracking complaints and grievances voiced through protection and advocacy and similar legal service programs; (2) analyzing nondiscrimination laws and other legislation to ascertain their effect on the delivery of health care to people with disabilities in managed care arrangements; and (3) tracking litigation. We have already compiled and analyzed the cases brought under the ADA and Rehabilitation Act, to date; to understand how these laws are being used when people with disabilities encounter barriers in managed care. From this research we are developing training and consumer educational materials to help individuals understand how to advocate for their rights in this arena. It is our hope that Centers for Independent Living will play a key role in this process by becoming training and resource centers in their communities on these issues. So, the long short (depending on how you view the explanation) answer is we wanted to introduce you to the project, peak your interest and share the early research. HANDLING PROBLEMS WITH MANAGED CARE: LEGAL PROTECTIONS I. Overview: Sources of Law for Managed Care A. Major Federal Laws 1. Legislation Americans with Disabilities Act of 1990 (ADA) Federally-funded Programs:  504 of the Rehabilitation Act of 1973 (Rehabilitation Act) Medicaid and Medicare Programs: Balanced Budget Act of 1997 (BBA) Private Insurance: Health Insurance Portability and Accountability Act of 1996 (HIPAA) Private Employer-Provided Insurance: Employee Retirement Income Security Act (ERISA) 2. Implementing Regulations and Guidance Documents ADA Title I: Equal Employment Opportunity Commission (EEOC) ADA Titles II & III: Department of Justice (DOJ) Rehabilitation Act: various agencies BBA & HIPAA: Health Care Financing Administration (HCFA) ERISA: Department of Labor (DOL) B. State Laws 1. Legislation Managed Care Laws Civil Rights Laws Laws Relating to Public Assistance Programs Insurance Reform Laws 2. Implementing Regulations, RFPs and Contracts Managed Care Laws: usually department of insurance and/or health Civil Rights Laws: varies (e.g., state attorney general, civil or human rights commission) Public Assistance: usually department of human services Insurance Reform Laws: department of insurance II. What Kinds of Legal Protections Exist? Legal protections vary by type of coverage. Consumers need to know that the answers to some questions will depend upon whether their health insurance is public (e.g., Medicaid or Medicare) or private. Protections may also vary depending upon the type of health plan. For example, health maintenance organizations (HMOs) tend to be more heavily regulated than other types of managed care organizations (MCOs) such as preferred provider organizations. A. Basic Rights: Public vs. Private Insurance 1. Public health insurance a. Protection against discrimination Public programs are subject to the Rehabilitation Act and Title II of the ADA, which require nondiscrimination, reasonable accommodation/modifications, and integration. State civil rights laws may provide additional protections. b. Consumer protections Basic due process rights (notice and hearing) are similar for Medicare and Medicaid beneficiaries. Medicare regulations spelling out the rights of Medicare beneficiaries in managed care are final; Medicaid managed care regulations are expected sometime this summer. Emergency care is one area in which both Medicare and Medicaid beneficiaries are already protected at the federal level. Health plans participating in Medicare or Medicaid must use a "prudent layperson" standard in evaluating the appropriateness of a beneficiary's use of emergency services. Beyond a core set of rights, protections for Medicaid beneficiaries will vary by state. c. Benefit mandates Medicaid benefits are more generous than Medicare benefits, e.g., Medicaid covers outpatient prescription drugs. Beyond a core package of basic services, Medicaid benefits will vary by state (individual health plans can also add certain "sweeteners"). Note: So-called "dual eligibles" enjoy the most protection, because (a) they cannot be forced into managed care, (b) they get the benefit of the more extensive consumer protections under Medicare, and (c) they get the benefit of the more generous Medicaid benefit package. 2. Private health insurance a. Protection against discrimination Employer-provided benefits are subject to Title I of the ADA and "public accommodations" (includes doctors' offices, clinics and hospitals and may include insurance policies) are subject to Title III of the ADA, with nondiscrimination, reasonable accommodation, and integration mandates. HIPAA also prohibits discrimination by health insurers, but most of its protections are limited to group plans. b. Consumer protections For private health insurance, rights depend on state law and whether the insurance is provided through an employer-sponsored "self-funded" plan (in which case state law protections do not apply, although there are limited rights under ERISA). c. Benefit mandates Benefit mandates vary by state. For example, many states require health insurers to cover diabetes treatment and supplies and self-management education, medical foods for individuals with certain metabolic disorders, and off-label uses of drugs. Some states, such as Florida, require HMOs to cover newborn children, including necessary care for congenital defects, and to provide continuing coverage (beyond age limits) for children who are incapable of self-sustaining employment by reason of mental or physical handicap. B. Enforcement of Rights 1. Administrative/alternative dispute resolution processes a. Filing a formal grievance/appeal with the MCO. b. Filing a complaint with the state insurance department (or the special managed care consumer assistance office, if your state has one). c. For denials of services, requesting external or independent review of an adverse determination (if available). Medicaid beneficiaries have the right to request a state fair hearing. After one denial, requests under Medicare are automatically sent to an independent reviewer. d. For ADA-related complaints, the DOJ Mediation Program. [Appendix B] General Tips for Consumers The squeaky wheel gets the grease. Statistics released by states indicate that plans reverse about 30-40% of denials upon internal review. (Independent review results in a decision for the consumer in about 40- 60% of cases.) Act, don't wait! If you wait, you may lose your right to file a grievance or appeal. If help is available, use it! Use the plan's toll-free number for consumer assistance. At a minimum, get them to help you understand your rights and responsibilities (if the member handbook is unclear) and the reasons for any policies/decisions that affect you. Contact an advocacy organization. Contact state agencies many have toll-free numbers and require that these numbers be included in member handbooks. Document, document, document! Make a record of any problem you experience while it is still fresh in your mind. For any contact, note the date, who you talked to, and what you were told. Be prepared. The process can be intimidating, and people aren't always as helpful as they should be. That's why it is important to be clear about your objective (why the effort is worth it), and to use whatever help is available. 2. Litigation strategies a. ADA-centered lawsuits Advocates for people with disabilities have been successful in "traditional" ADA cases challenging barriers to access and communication in managed care arrangements. Anderson v. Dept. of Public Welfare, 1 F.Supp.2d 456 (E.D. Pa. 1998) Background: Class action lawsuit under Title II of the ADA on behalf of Medicaid recipients with impaired mobility or vision participating in mandatory managed care program. Court said that the ADA does not require that each facility in program be accessible, but does require that each provider comply with certain minimum requirements (varying according to facility status as new construction or existing facility). Court left open the question of whether (a) verbal assistance is a sufficiently effective means of communicating information in provider directories and (b) audiotape is a sufficiently effective means of communicating information in member handbooks. In a settlement entered into on June 23, 1998, the Pennsylvania Department of Public Welfare agreed to do the following: (1) within 9 months, to inspect providers' officers, identify and communicate with those that are not ADA compliant, and to remove those who fail to come into compliance; (2) within 60 days, to arrange for providers to supply informational materials in alternative formats such as Braille, large print or audiotape upon request; and (3) to revise its provider directory to add information about accessibility and assist members in locating accessible providers. In a case that did not concern managed care per se, advocates won a similar victory. In the 1998 Consent Decree in Connecticut Association of the Deaf v. Middlesex Memorial Hospital, a consortium of hospitals agreed to work through the state hospital association to contract for 24- hour sign language and oral interpreter services. The hospitals also agreed to place TTY's next to public phones and to modify patient rooms for portable TTY's and closed captioning decoders, and to provide extensive training for staff. Innovative cases have been brought challenging contractual arrangements between MCOs and providers that contain incentives for providers to delay or deny care to people with disabilities. The ultimate outcome is still unclear, but at least one of these cases has passed a significant legal hurdle. Zamora-Quezada v. HealthTexas Medical Group of San Antonio, __ F.Supp.2d __, 1998 WL 892608 (W.D. Tex. 1998) Background: Plaintiffs are 2 physicians and 13 patients. The court was asked to rule on the defendants' motion to dismiss and motion for summary judgment. Plaintiff-enrollees allege their HMOs (1) delayed or denied them full and equal enjoyment of medical treatment and services in violation of the ADA, and (2) limited or denied medical treatment and services in violation of the Rehabilitation Act. HMO moved to dismiss on the grounds that the plaintiffs, among other things, lack viable claims under the ADA and Rehabilitation Act (defendants are protected by the ADA's insurance "safe harbor," lack the requisite control over providers, are protected by a provisions of state law prohibiting the corporate practice of medicine, and no violations are alleged). On the key issue of whether the plaintiffs had stated claims under the ADA and Rehabilitation Act, the court noted that the plaintiffs' complaint alleges that (a) on specific occasions plaintiffs were forced to endure long waits or medical care was delayed or denied them, while nondisabled patients received better treatment and (b) the HMO's financial arrangements make the disabled more costly to clinics leading to discrimination designed to force higher-cost patients to obtain services elsewhere. The court concludes "[i]t does not appear beyond a doubt plaintiffs can prove no set of facts in support of their claims of discrimination." The HMO raised a provision of the ADA that permits certain discriminatory practices in insurance as an affirmative defense, maintaining that all its payment and/or UR decisions are based on actuarial, statistical and empirical data. The court notes that Medicare HMOs are prohibited from engaging in any medical underwriting, i.e., from discriminating in coverage on the basis of health history or current health status (additionally, plaintiffs allege discrimination based on clinical evaluations, not experience ratings or risk science). On the issue of control, the court notes that the ADA applies to entities that "operate" a public accommodation, i.e., have a right to control the allegedly discriminatory conditions. It is a fact question for trial whether the HMO regulated healthcare decisions made by the medical group, including referrals and admissions, and attempted to monitor and influence physicians' utilization patterns. Finally, the HMO tried to characterize case as one of disparate impact rather than intentional discrimination (arguing that cost-control will eventuate in some denials of requests for care, and if people with disabilities have more requests, they will have more requests denied). The court found the plaintiffs' specific allegations that delays and denials were disability-based were sufficient to rebut defendants' nondiscriminatory reason and raise genuine issues of fact for trial. Another kind of case concerns an across-the-board policy (such as a restriction on hospital days or referrals) that has a greater impact on persons with disabilities than persons without disabilities. Dunlap v. Association of Bay Area Gov'ts, 996 F. Supp. 962 (N.D. Cal. 1998) Background: Ruling on defendant's motion to dismiss in lawsuit against HMO alleging that its failure to authorize appropriate therapy and equipment violated Title III. The court ruled that the plaintiff was not required to prove that disability (versus, e.g., a desire to cut costs) motivated the defendant's actions. (The court notes that cost considerations may serve as an affirmative defense.) The court stated that under the ADA, a person with a disability need not prove that he was treated differently from people without disabilities; discrimination exists under the ADA if a defendant treats a person the same as everyone else, despite his need for reasonable accommodation this distinguishes discrimination based on disability from discrimination based on race/gender. U.S. Supreme Court Precedent: Alexander v. Choate, 469 U.S. 287 (1985) Background: Rehabilitation Act case; case involved a challenge to a 14-day limit on inpatient hospital stays imposed by state Medicaid program, on the grounds that it would have a more severe impact on people with disabilities than on people without disabilities. The plaintiffs ultimately lost this one, but the court recognized the basis for the case as a valid one. The court states that proof of discriminatory animus is not required to establish a violation of the Rehabilitation Act. "Discrimination against the handicapped was perceived by Congress to be most often the product, not of invidious animus, but rather of thoughtlessness and indifference of benign neglect." The court notes two countervailing considerations: (a) effectuating statutory objectives, and (b) keeping burdens (i.e. difficulty and/or expense) imposed by statute within reasonable bounds. The court state that not all disparate impact showings will constitute prima facie cases of violation of the Rehabilitation Act, but the Rehabilitation Act likely reaches some conduct that has an "unjustifiable" disparate impact on handicapped. (The court suggests that disparate impact is unjustifiable when people with disabilities are denied meaningful access to services or excluded from services.) Yet another type of case might bring the integration mandate of the ADA and the Rehabilitation Act to bear on managed care, challenging failures to provide rehabilitation services or equipment to support independent living, support for institutional care but not home care, and so on. Much will depend on the outcome of the U.S. Supreme Court review of Olmstead. L.C. v. Olmstead, 138 F.3d 893 (11th Cir. 1998) Background: Plaintiffs alleged that state violated Title II by confining them in a segregated institution rather than placing them in an integrated community-based program. According to the court, the ADA not only mandates that individuals with disabilities be treated the same as individuals without disabilities, it also mandates reasonable accommodation to enable people with disabilities to enjoy social benefits available to people without disabilities (e.g., care in most integrated setting appropriate to needs). The court states that the fact that fiscal concerns motivated discriminatory treatment (here, unnecessary segregation) does not change its discriminatory character. Fiscal concerns may enter as a defense, but only to the extent that the state demonstrates that providing the required treatment would fundamentally alter the nature of the service provided. The U.S. Supreme Court has granted an appeal on the following question: Whether the public- services portion of the ADA compels the State to provide treatment and habilitation for mentally disabled persons in a community placement, when appropriate treatment and habilitation can also be provided to them in a State mental institution. 119 S.Ct. 633 (1998). The ADA and Rehabilitation Act can also be used to challenge provider refusals to treat a condition. Cases have hinged on the interpretation of "otherwise qualified" in the health care context. Woolfolk v. Duncan, 872 F.Supp. 1381 (E.D. Pa. 1995) Background: Allegation that physician, among others, refused to treat enrollee with HIV. According to the court, in the context of medical benefits, "otherwise qualified" standard means that disability alone is not a permissible ground for withholding benefits where reasonable accommodation will allow patient to enjoy benefit (disability as a reason for withholding contrasted with a "bona fide medical reason"). b. Medicaid-centered lawsuits Many Medicaid managed care cases focus on marketing and enrollment issues. The division of responsibilities for the Early and Periodic Screening, Diagnosis, and Treatment program is another area for significant activity in the courts. A lawsuit filed in California attacks some core problems of managed care bureaucratic rigidity, system complexity and lack of follow-through, and inadequate training using the federal Medicaid statute, the ADA, the U.S. Constitution, and a number of state laws. Carter, et. al. v. Belshe, et. al., No. 97CS90236 (Cal. Super. Ct., Sacramento County, filed Feb. 4, 1997). Counsel: Melinda Bird, Marilyn Holle, Protection and Advocacy, (213) 427-8747; Robert Newman, Western Center on Law and Poverty; Robert S. Wylie, Susan V. Eastman, Public Law Center. Background: disabled Medicaid managed care enrollees filed suit against the state Medicaid agency, the Department of Health Services (DHS) and the CalOPTIMA HMO for denial of timely services, denial of medically necessary out-of-plan referrals, and failure to provide notice and hearing. Plaintiffs claim that DHS has failed to properly monitor CalOPTIMA to ensure that it: has properly implemented its grievance procedure, is providing access to medically necessary services, and has not discriminated against persons with disabilities. Plaintiffs also claim that they were:(1) denied timely, written notice of action and of their right to a fair hearing (as required by the Medicaid statute and the 14th Amendment to the U.S. Constitution) (2) denied notice of rejected treatment authorization requests as required by a permanent injunction; (3) denied "aid-paid-pending" (continuation of services pending a fair hearing) and notice of their rights in this area; (4) denied timely processing of treatment authorization requests; (5) denied medically necessary services; (6) denied services in a "reasonably prompt" manner; and (7) discriminated against on the basis of disability. Plaintiffs also claim that DHS violated federal comparability requirements (services available to categorically needy individuals must not be less in amount, duration, and scope than those services made available to medically needy individuals; services must be equal in amount, duration, and scope for all individuals within categorically needy and medically needy groups. 42 U.S.C.  1396a(a)(10)(B)(ii)). Plaintiffs also allege that CalOPTIMA did not perform its case management and enrollment duties as required by the federal waiver. Finally, plaintiffs allege that CalOPTIMA has engaged in unfair or unlawful business practices in violation of state law. Beware: DeSario v. Thomas, 139 F.3d 80 (2d Cir. 1998) Background: class action lawsuit brought by Medicaid beneficiaries alleging that state's restrictive policy on coverage of Durable Medical Equipment violated U.S. civil rights laws. Court ruled that there is no statutory requirement that states cover all medically necessary services, even within covered categories of service, so long as health care provided is sufficient with respect to needs of Medicaid population as a whole. Court also said that in challenging a state list, a plaintiff has the burden of proving insufficiency. Subsequent history: A HCFA letter mandating that states adopt a review process for DME and rejecting the "Medicaid population as a whole" test for sufficiency was issued on September 4, 1998. c. Constitutional Issues A case brought on behalf of Medicare beneficiaries challenged HMO practices and government regulations on constitutional due process grounds. Grijalva v. Shalala, 152 F.3d 1115 (9th Cir. 1998) Background: class action lawsuit brought by Medicare beneficiaries alleging that HMO practices violate constitutional guarantees of due process. Court ruled that HMO denials of medical care to Medicare beneficiaries constituted government action and were therefore subject to due process requirements under the U.S. Constitution. Medicare regulations concerning notice and appeal rights failed to meet constitutional standards. The court affirmed the district court's specification of what due process requires: Notices must be legible, clearly state the reason for denial, inform the enrollee of appeal rights, explain hearing rights and procedures, and instruct enrollees on how to obtain supporting evidence. Hearings must be informal, in person, available upon request for all service denials, and expedited for acute care service denials. HHS must refuse the renewal of a contract with any HMO failing to meet due process requirements. The government has asked the U.S. Supreme Court to hear an appeal of this case. RESOURCES In addition to the Research and Training Center on Managed Health Care and Disability website, www.ilru.org/mgdcare/index.html, two other websites are extremely helpful: FamiliesUSA (http://www.familiesusa.org): The FamiliesUSA website includes reports on state consumer protection laws and may be a good starting point if you want to find out about your state's laws. Henry J. Kaiser Family Foundation (http://www.kff.org): The Foundation has commissioned numerous reports, listed on the website, and will send them to you free of charge. You can also request a publications list and place orders by calling 1-800-656-4533. Highly recommended: Kaiser Family Foundation, Protection for Consumers in Managed Care Plans: A Comparison of Medicare, Medicaid and the Private Insurance Market (August 1998). Includes a user-friendly chart as an Appendix. (Call 1-800-656-4533 and ask for publication #1428.) Also, two organizations that provide support services for advocacy and litigation in the area of health and mental health have helpful websites, the National Health Law Program (NHeLP) (http://www.nhelp.org) and the Bazelon Center for Mental Health Law (http://www.bazelon.org) Helping Clients Choose a Plan The consumer guide available via the RTC website includes lists of questions prospective enrollees should ask plans and providers. Another consumer guide, Your Guide to Choosing Quality Health Care, focuses on how to get information about quality in order to evaluate health plans, hospitals, ambulatory surgery centers, long-term care facilities, and physicians. This guide is available from the U.S. Agency for Health Care Policy and Research (AHCPR) at www.ahcpr.gov/consumer or 1-800-358-9295. These method for getting information can be supplemented by on-line research concerning plans, and to a lesser extent, providers. Here are some of the options: Rankings by U.S. News & World Report: At www.usnews.com/usnews/nycu/health/hetophmo.htm, enter a state name and you will get a list of the top-ranked HMOs for that state, along with the performance criteria U.S. News used to rank plans. Accreditation information: The National Committee for Quality Assurance is the accrediting agency for many HMOs. You can check a health plan's accreditation status via the NCQA consumer web www.ncqa.org (or by calling 1-888-275-7585). Medicare disenrollment information: FamiliesUSA has issued a report that lists the HMOs participating in Medicare that have the highest disenrollment rates. The report is available via the Internet at www.familiesusa.org/mhmo1.htm. Report cards: Some state regulatory agencies and business groups have created websites that allow consumers to access detailed HMO report cards. For example, the Texas Department of Insurance uses a report card form that includes information on an HMO's policies and track record on the Care of Chronically Ill and Disabled, Therapy Benefits, Out-of-Network Referrals, and Prescription Drug Benefits, at www.tdi.state.tx.us/consumer/hmosur/reglist.html#austin. Two sites organize links by state, so that you can quickly discover what information is available for your area: www.familiesusa.org/managedcare/map.htm and www.medicarehmo.com/rgmnu.htm (Medicare HMOs). You can also use a search engine such as Yahoo to find the webpages for state departments of insurance and health, or you can go to www.state.__(insert 2-letter state abbreviation).us to find the state website and proceed from there. Complaint information: Some state regulatory agencies make information about complaints they receive available on-line. For example, the Texas Department of Insurance site includes tables showing the number of "justified complaints" per 10,000 by HMO, at www.tdi.state.tx.us/company/cihmo97.html. Dealing with Problems Once again, the RTC website is a good supplement to this brief overview. The consumer guide and other materials outline rights and ways to protect them. When the response from a managed care organization is unsatisfactory, the next step is to register a complaint with a regulatory agency. In some states it is possible to do this electronically, e.g., Texas, at www.tdi.state.tx.us/consumer/consum83.html. Other states make complaint forms available on- line. For example, TennCare provides an explanation of rights and a greivance form at www.state.tn.us/health/tenncare/grievfrm.htm. You can link to this and other state Medicaid Managed Care sites via home.sprintmail.com/~dmurray008/agencies.htm. For clients in Medicare, the HCFA Medicare site may be helpful, www.medicare.gov/. One of the best resources for Medicare beneficiaries who experience problems is the Medicare Rights Center, www.medicarerights.org. If a case cannot be resolved without litigation, and you are not affiliated with an organization that provides legal services to clients, you can use the Internet to locate agencies that provide legal services. A list of Protection and Advocacy agencies is available through the National Association of Protection and Advocacy Systems' website, www.protectionandadvocacy.com/. The National Health Law Program does not provide direct services, but it can provide referrals to legal services organizations. Contact information is available via the NHeLP website, www.nhelp.org. The NHeLP website also contains material that may be valuable to lawyers who lack experience in litigating managed care issues. Appendix A: Assistance for Persons with Learning Disabilities Issue: The obligation of a state to provide assistance to people with learning disabilities in understanding their choices/navigating the system. I. Relevant Regulations and Guidance A. ADA Title II Regulations 28 CFR  35.130(b)(1) A public entity, in providing any aid, benefit, or service, may not, directly or through contractual, licensing, or other arrangements, on the basis of disability-- ...(iii) Provide a qualified individual with a disability with an aid, benefit, or service that is not as effective in affording equal opportunity to obtain the same result, to gain the same benefit, or to reach the same level of achievement as that provided to others... (3) A public entity may not, directly or through contractual or other arrangements, utilize criteria or methods of administration: ...(ii) That have the purpose or effect of defeating or substantially impairing accomplishment of the objectives of the public entity's program with respect to individuals with disabilities... (7) A public entity shall make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity. B. ADA Title II Technical Assistance Manual II-3.6100 Reasonable modifications. A public entity must reasonably modify its policies, practices, or procedures to avoid discrimination. If the public entity can demonstrate, however, that the modifications would fundamentally alter the nature of its service, program, or activity, it is not required to make the modification. ....ILLUSTRATION 2: A county general relief program provides emergency food, shelter, and cash grants to individuals who can demonstrate their eligibility. The application process, however, is extremely lengthy and complex. When many individuals with mental disabilities apply for benefits, they are unable to complete the application process successfully. As a result, they are effectively denied benefits to which they are otherwise entitled. In this case, the county has an obligation to make reasonable modifications to its application process to ensure that otherwise eligible individuals are not denied needed benefits. Modification to relief programs might include simplifying the application process or providing applicants who have mental disabilities with individualized assistance to complete the process. C. Rehabilitation Act Regulations 45 CFR 84.52 (a) General. In providing health, welfare, or other social services or benefits, a recipient may not, on the basis of handicap: (1) Deny a qualified handicapped person these benefits or services; (2) Afford a qualified handicapped person an opportunity to receive benefits or services that is not equal to that offered nonhandicapped persons; (3) Provide a qualified handicapped person with benefits or services that are not as effective (as defined in  84.4(b)) as the benefits or services provided to others; (4) Provide benefits or services in a manner that limits or has the effect of limiting the participation of qualified handicapped persons; or (5) Provide different or separate benefits or services to handicapped persons except where necessary to provide qualified handicapped persons with benefits and services that are as effective as those provided to others. (b) Notice. A recipient that provides notice concerning benefits or services or written material concerning waivers of rights or consent to treatment shall take such steps as are necessary to ensure that qualified handicapped persons, including those with impaired sensory or speaking skills, are not denied effective notice because of their handicap. 45 CFR  84.4(b) (2) For purposes of this part, aids, benefits, and services, to be equally effective, are not required to produce the identical result or level of achievement for handicapped and nonhandicapped persons, but must afford handicapped persons equal opportunity to obtain the same result, to gain the same benefit, or to reach the same level of achievement, in the most integrated setting appropriate to the person's needs. (4) A recipient may not, directly or through contractual or other arrangements, utilize criteria or methods of administration (i) that have the effect of subjecting qualified handicapped persons to discrimination on the basis of handicap, (ii) that have the purpose or effect of defeating or substantially impairing accomplishment of the objectives of the recipient's program with respect to handicapped persons.... II. Relevant Case Law A. Henrietta D. v. Giuliani, 21 A.D.D. 329, 1996 WL 633382 (E.D.N.Y. 1996) Summary: Residents of New York City with AIDS or HIV who were eligible for public assistance benefits sought class certification and preliminary injunction against city and state officials, claiming that system for distributing benefits through Division of AIDS Services (DAS) was ineffectual and proposed restructuring would exacerbate its inadequacies. City and state moved to dismiss. The court held that: (1) residents failed to demonstrate likelihood of success and thus were not entitled to preliminary injunction; but (2) residents stated causes of action for violations of ADA and Rehabilitation Act, and that officials violated residents' rights to due process; and (3) residents would be certified as class. Helpful language: In recognition of the difficulty experienced by PWAs in negotiating the complicated city social service system on their own, DAS provides assistance to clients in navigating the system, primarily through a case management program. The city and state took the position that DAS is a "special service," a matter of discretion. The plaintiffs argued that DAS was necessary to fulfill requirements of the anti-discrimination laws. Without a properly functioning DAS, they would be unable to access the basic public assistance for which they were eligible. They likened DAS to the ramp required for persons in wheelchairs to access public buildings. The court sided with the plaintiffs on this issue: "Defendants are incorrect to the extent that their argument is based on the presumption that they need not make any affirmative efforts to assist plaintiffs in getting their benefits and that DAS is therefore entirely legally gratuitous....The goal of DAS, at least in part, is to facilitate HIV-positive clients who are ill through the complex maze of social services that provide the variety of public assistance benefits to which plaintiffs are entitled. At a minimum, in its most basic, facilitory efforts, DAS is a necessary modification to, and not a fundamental alteration of, the public assistance services that the City provides to all eligible New Yorkers." At the same time, the court stressed the limits of the legal obligation: "On the other hand, plaintiffs' claim that DAS is currently so debilitated--or will imminently become so through implementation of the proposed restructuring--that defendants therefore currently violate or will soon violate the ADA and the Rehabilitation Act will still not likely succeed at trial.... Most courts that have addressed this issue have been careful to note that a reasonable modification is both moderate and not unduly burdensome. Although it is clear that DAS has its problems and that those problems sometimes affect plaintiffs' receipt of the benefits to which they are entitled, it is also clear that DAS has acted to expedite plaintiffs' receipt of some forms of aid, provides cash supplements to plaintiffs which are not available to others eligible for public assistance, and modifies New York City's general public assistance program by diminishing disabled clients' required visits to offices. Although not perfect in the execution of its services, based on the facts found thus far, DAS does appear to serve as a reasonable modification to public assistance benefits programs and to assist plaintiffs in meaningfully accessing welfare benefits which other New Yorkers receive." 9-10. B. Marisol A. v. Giuliani, 929 F.Supp. 662 (S.D.N.Y. 1996) Summary: Children who had suffered severe abuse and neglect sued state and city child welfare officials, alleging that defendants mishandled plaintiffs' cases and, through defendants' actions or inactions, deprived plaintiffs of their rights under federal and state statutes and Constitutions. Defendants moved to dismiss. The court held that plaintiffs stated claim under Americans with Disabilities Act (ADA) and Rehabilitation Act arising from defendants' alleged failure to take "modest affirmative steps" to permit plaintiffs meaningful access to child welfare system. Helpful language: After reviewing cases interpreting the reasonable accommodation provisions of the anti-discrimination laws, the court concludes: "[T]hese cases stand for the proposition that a disabled individual is entitled to meaningful access to the benefits and services provided by a public agency or an agency receiving federal funds. Access alone, despite defendants' arguments to the contrary, is insufficient. [citation omitted] Rather, a court may require an agency, under certain circumstances, to take affirmative steps to ensure that the access is meaningful." 685. See also Wolford v. Lewis, 860 F.Supp. 1123 (S.D.W.Va. 1994) (claim that failure to provide transportation to ensure "meaningful access" to services under the Medicaid program is actionable under  504 of the Rehabilitation Act). Note: It appears that the issue of reasonable accommodation for persons with developmental disabilities arises most frequently where states are seeking to terminate parental rights. For example, in In re Welfare of A.J.R., 78 Wash.App. 222, 10 A.D.D. 568 (Wash. App. 1995), although the court finds that the state did not violate the ADA, the description of the steps taken by the state to accommodate the parents' specific disabilities provides some guidance on the scope of the state's obligations, e.g., provision of pictorial instructions, use of visual rather than literary teaching aids in parenting classes. (These are aids to communication, suggesting that one might also proceed under the ADA's requirements in the area of communication, i.e., the obligation to provide auxiliary aids and services. However, the discussion of these requirements is usually limited to aids and services for physical, e.g., hearing and sight, versus mental impairments. Communication suits have generally been successful. For example, in August of 1998, the Connecticut Protection and Advocacy Agency settled a class action lawsuit against 32 hospitals. The hospitals agreed to support a state-wide clearinghouse that will make sign language and oral interpreters available 24 hours a day, and to educate staff, etc.) Other States may have separate requirements to provide assistance in connection with their Medicaid managed care programs. Section 1932(a)(5) of the Balanced Budget Act of 1997 requires that each state, broker, or managed care entity (MCO) provide all notices and information in a manner which may be easily understood by enrollees and potential enrollees. The preamble to the proposed rule implementing the Act discusses the format of materials that MCOs provide to enrollees, including a fourth or fifth grade reading level and use of focus groups to test cognitive understanding. Advocates commenting on the rule have urged the Health Care Financing Administration to make these guidelines requirements in proposed 42 CFR  438.10(c), and to add a further requirement that materials be made accessible to individuals with cognitive impairments through the use of visual aids such as pictures and simple diagrams. (The proposed rule for the Medicare+Choice program includes a requirement that health care professionals ensure that individuals with disabilities have effective communications with participants throughout the health system in making decisions regarding treatment options.) The preamble to the proposed Medicaid managed care rule also states that MCOs must document their ability to provide specialty services. Among the types of documentation that might be submitted is a description of a plan for identifying and assessing beneficiaries with serious or complex medical conditions. The access standards in proposed 42 CFR  438.306 include a requirement that MCOs provide initial assessment of all enrollees within 90 days of the effective date of enrollment, except that pregnant women and enrollees with complex and serious medical conditions must be assessed within a shorter period of time to be determined by the state. MCOs would also be required to have a state-approved process for identifying, assessing and providing appropriate treatment to individuals with complex and serious medical conditions. (MCOs participating in Medicare+Choice must have procedures to identify and assess individuals with serious medical conditions and establish and implement an appropriate treatment plan.) Further, a HCFA letter to state Medicaid directors dated October 5, 1998 includes the final version of the guidance entitled "Key Approaches To The Use Of Managed Care Systems For Persons With Special Health Care Needs." Under the heading of "Purchasing Strategy," the guidance urges states to consider "identifying potential beneficiaries, through effective outreach, bringing potential beneficiaries into the Medicaid program and facilitating the effective enrollment of each Medicaid beneficiary into the most appropriate care delivery system." Under "Access and Quality," the guidance states that "assurances should be provided that services (to aid in enrollment) are available for persons with cognitive impairments (or their guardians) during the MCO selection process." While the federal standards would apply to all state Medicaid programs, individual states, through statutes, regulations, and contracts with MCOs, may have their own requirements in the areas of outreach, access and quality. Some states have established consumer assistance or ombudsman programs and/or have requirements that MCOs develop internal assistance programs, although sometimes these programs are limited to assistance with complaints and grievances. Obviously, the most desirable framework would include informational materials in accessible formats, face-to-face counseling at the various "choice points" in managed care, case management services to ensure coordination of services, and adequate monitoring of compliance. In Carter v. Belsh‚, now pending in California, the plaintiffs (people with a range of disabilities) allege that CalOPTIMA, an MCO participating in the state Medicaid program, has violated its case management duties under federal and state law by establishing procedures and systems that make it impossible for the plaintiffs to communicate with case management staff, to obtain timely responses to their requests for assistance and to identify and access appropriate providers of primary and specialty care. Also, a number of cases involve the adequacy of outreach efforts in relation to children with mental impairments, under the more stringent requirements of the Early and Periodic Screening, Diagnosis, and Treatment program. This information is current through February 1999, to the best of our knowledge. However, please note that law in this area changes rapidly. Also, this outline is not intended to offer individual legal advice; application of the law to any particular set of facts is beyond its scope. Appendix B: About The DOJ Mediation Program The Department of Justice, through its technical assistance grant program, has established a program for mediation of ADA disputes. Mediation is an informal process where an impartial third party helps disputing parties to find mutually satisfactory solutions to their differences. Mediation can resolve disputes quickly and satisfactorily, without the expense and delay of formal investigation and litigation. Mediation proceedings are confidential and voluntary for all parties. Mediation typically involves one or more meetings between the disputing parties and the mediator. Mediation is neither therapy nor a "day in court." Rather, mediation should provide a safe environment for the parties to air their differences and reach a mutually agreeable resolution. Mediators are NOT judges. Their role is to manage the process through which parties resolve their conflict, not to decide how the conflict should be resolved. They do this by assuring the fairness of the mediation process, facilitating communication, and maintaining the balance of power between the parties. Representation by an attorney is permitted, but not required, in mediation. While mediators may not give legal advice or interpret the law, they will refer parties to impartial outside experts within the disability and legal communities when questions or issues needing clarification arise. A successful mediation results in a binding agreement between the parties. If mediation is unsuccessful and an agreement can not be reached, parties may still pursue all legal remedies provided under the ADA, including private lawsuits. Complaints under both title II (public entities) and title III (private entities) can be mediated. Disputes involving barrier removal or program accessibility, modification of policies, and effective communication are most appropriate for mediation. To find out more about the program call: 1-800-514-0301 Search the RTC: Rural RURAL FACTS RURAL HEALTH AND DISABILITY The health of many people with disabilities living in rural areas is not as good as one might expert. While people with disabilities can lead healthy and independent lives, they often lack access to health care providers who understand their needs, and lack access to services that would support their efforts to live independently. 1,2,3,4 Our research shows a self-help health promotion model can be effective in addressing these issues for some people in rural communities, significantly improving health and reducing medical service utilization. Our research shows: 1. People with disabilities living in rural areas experience an average of 14 secondary conditions each year. 5 Secondary conditions include problems such as pressure sores, physical de-conditioning, poor nutrition, urinary tract infections, depression and pain. 2. Secondary conditions and other health problems experienced by people with disabilities are costly. Fifteen percent (15%) of people with disabilities living in the community account for 29% of all physician visits and 40% of all hospitalizations.6 3. The health problems experienced by people with disabilities are complex. Our research shows that these health problems (e.g. secondary conditions) interact with one another and are related to a person's overall health orientation.7 4. Secondary conditions can be managed and prevented. Proper education and support delivered by independent living centers can dramatically improve the health of adults with disabilities by an average of 37%, and can significantly reduce medical service utilization.8,9 5. More research is needed to develop effective models for promoting health of people with disabilities. There is some general agreement among professionals about factors that might increase risk for secondary conditions but there are relatively few data to support these beliefs. Even for the general population, programs for maintaining healthy lifestyles are far from well understood. A clearer understanding for this population is critical. 6. Rehabilitation and other service providers should include screening for secondary conditions as part of their ongoing services. Our research has produced a three-item instrument that can correctly identify 80% of those at high-rick for secondary conditions. Early detection and proper referral might significantly improve outcome.10 7. As Medicaid and Medicare programs evolve, they should include provisions for health promotion and maintenance services. Currently, these programs only pay for treatment once health problems occur but won't target high-risk populations for prevention efforts that could save money and maintain a healthier population. 8. Private Insurance programs and employers should also develop health promotion services designed to maintain the health of persons with disabilities and to prevent secondary conditions. 9. Rural health research centers and rural health networks should include issues of disability health in their programs. The declining quality of rural health care has particularly dramatic effects on this population. 10. Independent Living Centers (ILCs) should be reimbursed for providing these services by Medicaid and other third-party payors.11 Cost Benefit of Health Promotion From The Montana/Kansas Study We used outcome data from our research 9 to compare projected costs of medical services accrued over 20 months under the standard "acute care model" and a "health promotion model." The health promotion model includes an eight session workshop led by independent living center (ILC) staff. The sessions focus on topics including goal setting, problem solving, adopting a hopeful and optimistic attitude, and overcoming depression. In addition, a number of specific behavioral repertoires are taught, including communication skills, medical information-seeking skills, changing one's nutritional intake and level of physical activity, and an introduction to advocacy skills. After six months our health promotion intervention led to a 37% improvement in secondary conditions and a 45% reduction in physician visits. 9 Assuming an average cost of $75 per visit, we project the participants in our study as a group would spend approximately $24,000 under the acute care model, and approximately $8,000 with a health promotion intervention. Savings from a health promotion approach can be used to provide more services to the same population, the same services over a longer period of time or to more people, or to maintain a level of services in the face of cutbacks. Reimbursing ILCs for providing consumer-directed health promotion services also provides a mechanism for expanding IL services to unserved rural areas. Check Your Health Our research has produced a brief screening instrument of three items that can accurately identify nearly 80% of those at risk for secondary conditions. The manual for this screening instrument, Check Your Health, is available. The manual outlines winning strategies consumers can use to respond to health problems. 1. Overall, would you say your health over the past 12 months was: __ Excellent __ Good __ Fair __ Poor 3 2 1 0 2. Overall, would you say that your ability to INDEPENDENTLY engage in desired activities such as work, recreation, or daily living over the past 12 months was: __ Excellent __ Good __ Fair __ Poor 3 2 1 0 3. During the past year, how much would you say that depression limited your activity per week? (Depression is more than feeling blue. Symptoms of depression include extreme long-term sadness, loss of pleasure in favorite things and activities, sleep problems, weight loss or gain, thoughts of suicide or crying.) __ 0 Hours __ 1-5 Hrs __ 6-10 Hrs __ 11+ Hrs 3 2 1 0 Total your score for the preceding questions. (If you score 5-9 points, you're probably doing well. If you score 0-3 points, you should obtain assistance.) A Sample of Some Winning Strategies Seek Support or Services from Others or Get Referrals For Environmental Obstacles: Talk to someone at an ILC (Independent Living Center), a Voc. Rehab. counselor or a Public Health Service provider. For Psycho-Social Issues: Support groups, ministers, ILC staff, Voc. Rehab. counselors, mental health centers, physicians or psychologists are likely to be able to assist you. For Medical Conditions: See your family physician or a physiatrist, who specializes in medical problems related to disability. Lifestyle Challenges: Ask service providers (ILCs, PVA chapters, etc.), about wellness programs tailored to people with disabilities. Also try other programs such as Weight Watchers, and consider joining a health or wellness program. Educate Yourself There are extensive materials you can read and videos about disabilities and health maintenance strategies. Check with your local library or service providers, (e.g. physicians, ILCs, Voc. Rehab. counselors, public and mental health centers). Also try the many electronic bulletin boards by "surfing" the Internet. If you're unfamiliar with the Internet, ask a friend who can help you search for topics and discussion groups of interest. There are hundreds of them. Resources for Managing Secondary Conditions Available from the Montana University Affiliated Rural Institute on Disabilities at The University of Montana: Check Your Health: Health screening for adults with disabilities related to physical impairments. Living Well With A Disability: A Workbook for Promoting Health and Wellness Consumer Reporting Form: A surveillance instrument of secondary conditions. Risk Assessment: Lifestyle and secondary conditions. Phone: 1-888-268-2743 Contact: Tom Seekins ruraldoc@selway.umt.edu Craig Ravesloot raves@selway.umt.edu Colleen Murphy-Southwick murphys@selway.umt.edu Available in English and Spanish from the Research and Training Center on Independent Living at The University of Kansas: Chronic Fatigue: A Common Complaint Joint Problems: A Real Pain SCI and Aging: A State of Body and Mind Urinary Tract Infections Chronic Pain Management Pressure Sores Phone: 1-913-864-4095 Contact: Glen White | Carlos Lopez | Ken Golden This research was conducted by staff of the Research and Training Center on Rural Rehabilitation at the University of Montana and the Research and Training Center on Independent Living at the University of Kansas. This work was supported primarily by a grant from the Center for Disease Control (R04/CCR808519). Additional support was provided by a grant from the National Institute on Disability and Rehabilitation Research (H133820002). Opinions expressed are those of the authors and not that of the U.S. Department of Education. 8.9.12 DEVELOPING AND EVALUATING COMMUNITY-BASED HEALTH PROMOTION PROGRAMS FOR PEOPLE WITH DISABILITIES Tom Seekins, Glen W. White, Craig Ravesloot, Kaye Norris, AnnSzalda-Petree, Juan Carlos Lopez, Kenneth Golden, and Quincy-Robyn Young University of Montana and University of Kansas Approximately 51 million people (19.4% of the population) have a disability and, of those, 25 million people (9.2% of the population) have a severe disability (McNeill, 1993). Most of these individuals live in community settings and a disproportionately high percentage of these people live in rural areas (Seekins, Innes, & Maxson, 1998). All are at risk for secondary conditions (Marge, 1988; Pope & Tarlov, 1991), particularly those who live in rural areas where access to medical and health services, and health information is lacking (Seekins, Clay, & Ravesloot, 1994). Secondary conditions are conditions that occur after a disability is acquired and that further reduce health and independence (Brandt & Pope, 1997; Pope & Tarlov, 1991). They may range from medical complications such as pressure sores, to problems of psycho-social adjustment such as depression, to environmental issues such as access. In this framework, having a disability is viewed as increasing one's risk for a variety of preventable problems that can limit health, functional capacity, and independence. Arguably, secondary conditions may be the primary cause of limitation associated with disability. Medical treatment for people with disabilities accounts for a significant portion of all medical expenditures (LaPlante, Rice, & Wegner, 1995). The extent to which secondary conditions contribute to these needs and costs is not well understood but is believed to be high. For example, treatment of pressure sores for tetreplegeia can run as high as $91,000 (Garber, Rintala, Rossi, Hart, & Fuhrer, 1996; Sugarman, 1985). On this basis alone, in an era of cost containment, one might assume that services designed to prevent or manage secondary conditions so that they are less likely to require medical management would be in place. Despite the significance of secondary conditions to rehabilitation and public health, however, surprisingly little is known about their incidence or prevalence, the contribution of various protective or risk factors (especially environmental and cultural factors), or strategies for managing their occurrence (Brandt & Pope, 1997). For people with traumatic injuries, rehabilitation hospitals provide initial in-patient rehabilitation services to increase functional capacity and reduce complications. Medical insurance coverage for these services, however, has seen more restrictions and a decline of patient length of stays (Devivo, Whiteneck, & Charles, 1995). People whose disabilities are associated with chronic diseases but whose limitations are functionally similar to those with traumatic injuries, rarely have access to or use such in-patient rehabilitation programs. Recent developments in managed care programs may restrict access to outpatient rehabilitation services or access to specialists for both populations even further. Unfortunately, while insurance programs have focused on reducing access to acute care in medical rehabilitation settings, few provisions for access to health promotion and wellness services for people with disabilities living in the community have been created to counterbalance this trend. As with individuals with severe disability associated with chronic diseases, individuals with injuries are often "on their own" once they leave acute care services. As access to medical services is restricted and LOS declines, there is growing concern about the long-term management of disability for those living in the community. As such, there is a need to develop and disseminate programs designed to promote the health of people with disabilities, and help them manage and prevent secondary conditions. Ideally, such programs would be: easily accessible in the community, effective in helping individuals with disabilities lead healthy and independent lives, inexpensive, and reduce the need for medical services. The purpose of this manuscript is to describe a process we used to develop and evaluate components of such a health promotion program. A Process of Understanding and Development The goal of public health efforts is to maintain or improve the health and well-being of the population. While such efforts are directed by social values, public health practitioners approach these goals by applying scientific methods. Such blending calls for a process that includes developing an understanding of the significance of the problem, identifying a population and their particular interests, identifying potential delivery systems and their expectations, developing methods for assessing problems they experience , conducing surveillance activities, examining data to identify variables of utility in program development, and developing and evaluating intervention strategies. In our efforts, we also emphasize a process of participatory action research. The contribution of each phase to the process and various limitations are discussed. Significance of Problem Issues that draw scientific or public-policy attention may emerge in a variety of ways and from many sources , including new insights, advancements in science, and constituent demand. Developing programs that are responsive to needs and likely to be adopted requires an understanding of the history and context of the issues. Marge advocated for programs designed to prevent disability over several years through the National Council on Disability. His proposals were eventually supported only after they included consideration for promoting the health of people who had disabilities and preventing secondary disabilities (Marge, 1988; National Council on Disability, 1986). This compromise reflected the emergence of the Independent Living movement that called for demedicalizing disability and recognizing the dignity of people with disabilities (e.g., DeJong, 1979; 1983). Unfortunately, while the concept of secondary disabilities or secondary conditions was extremely productive, it came with little science. Nevertheless, these efforts led to funding for research on prevention of secondary conditions through the Centers for Disease Control and Prevention (Houk & Thacker, 1989). Identify A Population and Their Particular Interests. Disability is a wide-ranging phenomenon affecting millions of individuals throughout the life span (e.g., Pope & Tarlov, 1991). The experience of disability can vary depending on the relationship between the environment and the individual over time (e.g., Horowitz, 1987). Physiological contributions to disability may include injury, chronic disease, mental retardation, mental illness or emotional disturbance, and aging. While physiological and environmental factors may vary considerably, the functional limitations experienced as a result of these interactions (e.g., difficulty communicating, difficulty learning, or difficulty moving about without assistance) present many commonalities. Still, it is important to identify the characteristics of a group in order to focus on specific needs and develop acceptable interventions; much like market researchers look for niches and design products to fit them. We chose to focus our work on adults who experience disability related to mobility impairments. This choice was influenced significantly by the parallel choice of working through centers for independent living whose guiding philosophy emphasizes community access and the common issues faced by people with varying disabilities. Identify a Potential Delivery System and Its Expectations In designing community-based applications, it is useful to identify a potential delivery mechanism for the application early in the process. The organizational features of service and treatment agencies influence the structure and content of the intervention itself, as well as research methodology. For example, the nature of an intervention may vary significantly depending on whether it would be delivered by professional staff or peer counselors. Similarly, organized settings tend to create selection bias through eligibility criteria. There are a wide range of mechanisms for delivering health information and support to people with disabilities, including government agencies such as the Veteran's Administration and county health departments, the state system of vocational rehabilitation, national networks of community-based service providers such as Goodwill Industries, and networks of support groups such as the MS Society and the Paralyzed Veterans of America. We chose to work with centers for independent living (CILs). CILs are community-based, non-residential, non-profit, consumer-directed programs directed and operated by people with disabilities (Smith, Frieden, & Richards, 1995). CILs have a mission to both advocate for social change on behalf of and to deliver services to people with disabilities. CILs were recognized by and receive substantial funding from the Rehabilitation Act of 1978. Currently, there are about 337 CILs that serve an estimated 213,000 individuals with severe disabilities annually (Innes, et al., 1999). An important concept of CIL programs is that they are "cross disability" in nature. That is, in their service provision, CILs recognize the commonalities between people with differing disabilities. Staff of CILs tend to be a mixture of professionals, para-professionals, and consumers. They also frequently involve consumers as volunteer peer counselors. Similarly, CIL services emphasize consumer control and self-help. While the independent living (IL) movement for people with disabilities has always recognized the importance of health and wellness, there has been some antagonism with medical institutions and professions. IL philosophy argues that, once stabilized, disability is no longer a medical issue and that people with disabilities are in the best position to manage their own health (DeJong, 1979). As such, IL philosophy has been careful to distinguish health maintenance for which individuals can take personal responsibility from medical care delivered by health-care professionals. Accordingly, in order to fit within this service delivery mechanism, products of our work had to incorporate features that addressed these important considerations. In addition, they had to be relatively easy to use and compatible with busy and diverse work schedules of CIL staff. They also had to be consistent with the philosophy of consumer control and direction. In addition, our work had to be designed to address issues across disability groups. Finally, the emphasis on consumer control led to our use of Participatory Action Research procedures (Whyte, 1991; Fenton, Batavia, & Roody, 1993). Develop Methods for Assessing the Problem Once a population and setting are selected, it is critical to identify the specific concerns of that population. This typically involves an assessment process. We began development of an instrument for assessing secondary conditions with a literature review in which we identified 27 potential secondary conditions of relevance to adults with disabilities related to mobility impairments. Next, we involved CIL staff and consumers in a series of focus groups designed to identify and define secondary condition of interest from their perspective. Participants in these focus groups added 13 conditions we had not identified in our literature review (Seekins, Smith, McCleary, Clay, & Walsh, 1990). Initially, we assumed that adults with disabilities related to mobility impairments might experience up to four of these secondary conditions during a 12 month period. This led to a checklist that asked respondents to simply indicate which, if any of the conditions they had experienced during the last year. Data from a pilot test of this instrument were not interpretable because respondents checked nearly half the conditions and no patterns were apparent. Some critics suggested that respondents might not understand the items presented because they were unfamiliar with some of the terminology. Accordingly, we worked with focus groups of CIL consumers to develop brief, understandable definitions of each item. In order to increase variance in the data, we also developed a simple 4-point rating scale that asked respondents to rate the extent to which each of the conditions limited their activities; with a "0" meaning no limitation experienced due to a condition and "3" meaning eleven or more hours a week limitation due to the condition . Table 1 shows an example of such an item. ------------------------ Table 1 at the end of this document. -------------------------- Pilot tests of this revised instrument showed that CIL consumers could complete it easily and quickly. Further, the rating scale allowed us to estimate both the prevalence and severity of conditions reported. In addition, by combining these two measures, we were also able to create a Problem Index that rank-ordered the most severe problems experienced by the most people; suggesting priorities for intervention. Conduct Surveillance Activities Once satisfied with a working instrument, we used it to collect data about consumers' experience with secondary conditions from three major groups in Montana, including consumers of CIL services (Seekins, Clay, & Ravesloot, 1994), residents of three American Indian reservations (Clay, Seekins, & Cowie, 1992), and 1,000 randomly selected holders of handicapped parking permits in the State. A total of 594 individuals with mobility impairments living in 44 of Montana's 56 counties returned surveys. Table 2 shows the distribution of impairments reported by this sample. Forty-seven percent of respondents were male and 53% were female The average age of respondents was 57 years . The average length of time since acquiring their primary disability was 18.5 years with a median of 16.3 years. Four hundred ninety three (84%) reported their race as white and 78 (13%) identified themselves as Native Americans. ------------------------ Table 2 at end of this document. --------------------- Table 3 presents the measures of secondary conditions for these respondents. The average number of secondary conditions reported was 13.5. Respondents rated their overall health and independence on a four point scale similar to that used to rate secondary conditions. Respondents rated their overall health as 1.86 ( fair) and their overall independence as 2.3 (poor). Importantly, ten of the conditions suggested by consumers in the development of the instrument were among the top 15 items. Had we not involved consumers in the process, we may have missed these critical issues altogether. --------------------- Table 3 at end of this document. ---------------------- Examine Data for Relationships and to Identify Potential Independent Variables We had assumed that secondary conditions would cluster around specific impairment groups. That is, we expected that people with spinal cord injuries would have a unique pattern of secondary conditions in comparison to those with disabilities related to other mobility impairments. To test the hypotheses that the constellation of secondary conditions is related to primary condition, we used factor analytic techniques. While differences between these groups were evident, the most striking finding was the high degree of commonality between groups for the most significant conditions (Ravesloot, Seekins, & Walsh, 1997). The most significant problems reported by the most people included issues of access, mobility, physical fitness, weight management, depression, pain, and isolation. Other, more medically related concerns were reported to lead to significant limitation but were reported by fewer individuals. Develop and Evaluate Potential Intervention Frameworks and Procedures Once data are collected that point toward a need, there is an ethical obligation to respond. We explored two strategies for addressing the needs of this population, including dissemination of health maintenance information, and health promotion and wellness education. Responding to identified needs for health information. A typical strategy for responding to public health problems is to develop clear statements for healthy behavior and widely disseminate them (e.g., Green & Kreuter, 1991). This approach targets a large number of individuals with useful information and at a relatively low cost. White, Youngbauer and colleagues worked with consumers with spinal cord injuries to develop a series of easy-to-read resource booklets that described practical strategies for preventing and managing twelve different secondary conditions reported by consumers with spinal injuries and other similar disabilities. Brief descriptions of the targeted conditions in these booklets were prepared as camera- ready newsletter inserts. In addition to being written in English, the materials were translated into Spanish to help provide this information to an even wider audience. CILs were asked to include the inserts in their newsletters distributed to their consumers. The inserts invited consumers to review the more detailed booklets on secondary conditions located at the CIL's library. These camera-ready newsletter inserts were disseminated to several hundred thousand current and past consumers of CIL services over four years. Since the primary focus on this project was information development and dissemination, no data were obtained as to the actual effectiveness of this information to reduce risk of secondary conditions. Developing and demonstrating a health promotion intervention. A second strategy for responding to surveillance data such as described above is to develop health education programs that provide more detailed information, instruction, support, and follow-up. While this strategy is more intensive and more costly, it increases the likelihood that participants in the programs will acquire the correct information. In addition, they may practice key skills and receive corrective feedback on their performances. As in designing other components of these programs, we involved CIL staff and consumers in designing a framework for a community-based health promotion intervention. Originally, because of a focus on rural residents, we had anticipated the need to conduct individual home visits to overcome the lack of accessible transportation found in most rural areas. In our original plans, we had envisioned an individually focused, behaviorally-based intervention that delivered information about specific practices (e.g., pressure releases). Providers and consumer participants pointed out, however, that this approach might further exacerbate problems of isolation identified as one of the more important secondary conditions in our surveillance work. They suggested that a group format - despite problems of transportation - might help address isolation as part of the planned intervention. Further, they suggested, consistent with IL philosophy, that participants in a support group format could both share information and offer mutual encouragement. This led us to develop and pilot a nine-component model program for preventing and managing secondary conditions in rural areas. This model included steps of community resource mobilization, surveillance or assessment, topical consumer workshops with self-help information, individual prevention planning, referral for needed services, case advocacy, follow- up, peer support, and consumer advocacy (Seekins, 1992). At the core of this model was a series of eight community-based secondary conditions workshops each addressing a specific condition, consumer development of individual prevention objectives, and case-management support. In addition, we developed a workshop leader's guide that included directions on how to organize and conduct each of the sessions. Hints on organizing transportation and insuring accessibility for participants were included in the guide as well. In a pilot test of this framework, thirteen consumers of two CILs set an average of 7.3 objectives each. Ratings of secondary conditions relevant to those objectives, collected using the surveillance instrument, improved 20% from a pretest to a posttest measure. Importantly, this pilot allowed us to estimate the potential viability and costs of delivering this intervention through CILs (approximately $1,927 in 1990 dollars to conduct the eight-session workshop series - an average of $200 per participant or $15 per person per session). This budget included staff time and travel, facility rental, postage and telephone costs, materials and transportation costs for participants, and an administrative fee. Revise and Formally Evaluate Intervention Programs While these preliminary findings were encouraging, there was a need for replications with more adequate controls, measures over a longer period of time after intervention, and measures of health care utilization. In addition, further analysis and consideration of our data (Ravesloot, et al., 1997) suggested that elements of health orientation, optimism, and personal meaning from Seligman's (1990) reformulated model of learned helplessness and Antonovsky's (1979, 1987) Sense of Coherence model might significantly enhance the intervention. In a separate study of 119 adults with spinal cord injuries, we were able to collect more extensive data on risk variables, as well as secondary conditions. A regression analysis of these data supported an emphasis on health orientation, including identification of meaningful goals. This analysis led to significant revisions in both the consumer, self-help manual and training for group facilitators. Specifically, the revised materials emphasized a philosophy of health as a means to enabling important personal goals by providing detailed exercises for clarifying personal goals. In addition, group facilitators received training in emphasizing this process. Table 4 presents the title, primary objective, and rationale for each of the chapters in the revised consumer materials. ------------------------ Table 4 at end of this document. --------------------- Twenty- two adults with spinal cord injuries participated in an evaluation of the revised health and wellness program conducted by five CILs in Montana and Kansas. Fifteen participants completed both the program and the extensive data collection requirements (i.e., pre, post, and six-month follow-up). In addition, 37 individuals with SCI were recruited by the staff of the New Mexico Disability Prevention project and their State's Office of Vocational Rehabilitation to serve as a no-treatment comparison group. Twenty-one of these individuals completed the extensive data collection measures. Table 5 presents a comparison of various demographic features of these two groups. The only significant differences were in race and education. This difference is believed to have been a function of the different geographic areas covered. ------------------------ Table 5 at end of this document. --------------------- We employed a non-equivalent control group design (Cook & Campbell, 1979) to evaluate the effectiveness of the intervention. Again, we used the surveillance instrument as a primary measure of limitation due to secondary conditions. In addition, participants completed the Center for Epidemiological Studies of Depression Scale (Radloff, 1977) as an additional, more extensive measure of depression. Finally, we attempted to measure medical services utilization by asking participants to report whether they had seen a physician for any of 17 medically-related conditions (e.g., pressure sores, urinary tract infections, pain, etc.) during a given time period (e.g., during the past six months) and, if so, how many times. Treatment effects were evaluated using repeated measures anova on six dependent variables. Table 6 presents the mean test scores for both groups at pretest, posttest, and at six-month follow-up. There was a significant decrease in reported limitation due to secondary conditions for the workshop participants ("Secondary Conditions" in the table); an average improvement of 37% over the pretest for workshop participants. Those in the comparison group remained essentially unchanged. ------------------------ Table 6 at end of this document. --------------------- Another key result was the change on measures of the CES-D. It is important to note that, at pre-test, both groups's means on this depression measure suggested clinically significant levels of depression such that referrals for treatment might be appropriate. However, at posttest and follow-up, the average for the intervention group dropped significantly below the cut-off for clinical depressions (approximately 16 points) and maintained these improvements over time, while the comparison group stayed at consistently elevated levels. There were similar comparisons on measures of health-care utilization. Participants in the treatment group reported an average 45% reduction in physician visits while those in the comparison group reported an increase in visits. This finding is confounded, however, by the different rates of reported physician utilization at pretest. The increase in physician visits reported by those in the comparison group may be attributed somewhat to reactivity to the measurement instrument. Nevertheless, these findings are encouraging. We also interviewed several participants after collecting the six-month follow-up data. In these discussions, workshop participants reported anecdotes of their progress toward long-term goals, including gaining part-time employment, starting romantic relationships, and re-locating across country, to name a few. In fact, our experience has led us to argue that the intervention's goal orientation, in which workshop participants establish meaningful goals first and treat health management as one means to their ends, may be the basic change mechanism. That is, health is treated as a means to an end rather than an end in itself. People adopt health behaviors when doing so helps them to meet important life goals. Implications and Future Directions While these results are encouraging, they have been observed with a relatively small number of individuals from a narrow sample of CILs. A similar intervention focusing on adults with severe arthritis has shown similar results, however (Campbell, Sengupta, Santos, & Lorig, 1995). Still, there is a need to assess whether such results can be replicated with a larger, more representative sample of CIL consumers. It will also be important to assess maintenance and generality of any changes over time. Finally, it will be important to examine the cost- effectiveness (Haddix, Teutsch, Shaffer, & Dunet, 1996) of such a program. A study is currently underway to examine such questions. Cost effectiveness Findings from this and similar research suggest that health promotion interventions can help reduce disability due to secondary conditions. A next important step is to determine whether such contributions can be made in a cost-efficient manner. While improvements in the quality of life individuals can achieve are inherently good, society's willingness to support such efforts may diminish with increasing cost. On the other hand, if such programs can demonstrate not only improvements in health and independence but do so in a way that is cost-neutral or even reduces costs to society, presumably, social institutions should be willing to invest in them. It will be important to examine various strategies to determine whether they are cost-effective and to provide a framework for making choices about support for different programs. One strategy is to develop interventions that have relatively low costs, even if they have relatively modest benefits. Another, is to look for interventions which, even though high in cost have extremely high benefits. A third strategy involves focusing on niches where a series of interventions may have significant potential. Readiness One way to improve the cost-effectiveness of interventions is to insure that they are delivered to the right people at the right time. Few interventions are effective for everyone at every point in their lives. Health promotion interventions are no exception. There may be several factors that contribute to the likelihood that an individual will benefit from this type of intervention at any particular point in time (Marcus, Banspach, LeFebure, & Rossi, 1993). Generally, the likelihood that an individual may benefit from such an intervention may be referred to as readiness. Readiness includes issues of physiological status, as well as psychological and emotional states that may contribute to a person's receptivity to information about new practices and his or her likelihood to change. Importantly, like disability itself, the environment may also contribute to a persons' readiness. For example, an individual whose home is not yet easily accessible, whose assistive technology is not providing adequate assistance, or whose personal assistance providers are untrained or unreliable may also be said to not be quite ready for a specific intervention. It will be useful to examine issues of readiness for health promotion among individuals with disabilities. An important aspect of including environmental components to readiness is that such a focus points directly to potential strategies for increasing readiness by reducing barriers (e.g., securing accessible transportation). In addition, such a focus is consistent with IL philosophy and practice. Diverse Models As mentioned above, there is a wide range of potential health promotion intervention strategies and delivery systems for people with disabilities. Further, the content of such interventions may vary significantly across populations, age ranges, cultural background, and gender. There may also be advantages to gain by exploring interventions at different levels of intensity. For example, simply making information about managing secondary conditions available to people with disabilities, as reported by White, Seekins, & Gutierrez (1996), may be quite cost effective. Similarly, more intensive interventions targeted at individuals who are at highest risk or currently experiencing a condition may be cost effective. For example, preliminary data from an evaluation of the effectiveness of in-patient and out-patient services provided by a VA hospital suggests that such regular services may reduce the prevalence of secondary conditions among veterans with spinal cord injuries by half when compared with a population of people with spinal cord injuries not receiving such intensive services (Dunn, 1998). While the cost of such intensive services may be higher than those typically available, they may be more cost-effective over time. Advocacy for Policy Change A major issue in making health promotion available to a wide range of people with disabilities involves the question, "Who will pay for such services and supports?" People with severe disabilities are often unemployed and, therefore, lack access to insurance provided by employers. Further, the rules and regulations governing Medicaid and Medicare, a primary source of health insurance for many people with disabilities, are unclear in their coverage of health and wellness services such as those discussed here. It would seem that data showing such programs as cost-effective would be well received by these agencies. Unfortunately, these programs are increasingly administered by managed-care corporations. This proliferation of responsibility makes it difficult to identify and discuss such issues with those in a position to make policy decisions. As such, research should not simply produce data, build science, and stimulate further research. It should also offer insightful recommendations for policy change as well. Further, it must take a market orientation to increase access to benefits. Conclusion Adults who experience disability associated with mobility impairments are at risk for a variety of secondary conditions. Many of these are preventable. Experience and data from our research shows that consumer-directed organizations, such as CILs, can deliver cost-effective health promotion and wellness programs to their consumers. While these programs can be improved and others developed, a critical question is, in this era of managed care, who will pay so that all can gain? References Antonovsky, A. (1979). Health, stress, and coping. San Francisco: Jossey-Bass. Antonovsky, A. (1987). Unraveling the mystery of health. San Francisco: Jossey-Bass. Brandt, E. & Pope, A. (1997). Enabling America: Assessing rehabilitation science and engineering. Washington, DC: Institute of Medicine, National Academy of Science. Campbell, B.F., Sengupta, S., Santos, C., & Lorig, K.R. (1995). Balanced incomplete block design: Description, case study, and implications for practice. Health Education Quarterly, 22 (2), 201-210. Clay, J.A., Seekins, T., & Cowie, C. (1992). Secondary disabilities among American Indians in Montana. 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Secondary disability prevention: Involving consumers in the development of a public health surveillance instrument. Journal of Disability Policy Studies, 1 (3), 21-36. Seligman, M.E. (1990). Learned optimism. New York: Pocket Books. Smith, Q., Frieden, L., & Richards, L. (1995). Independent living. In A.E. Dell Orto & R.P. Marinelli (Eds.), Encyclopedia of disability and rehabilitation (pp. 399-406). New York: MacMillan Library Reference USA. Sugarman, B. (1985). Infection and pressure sores. Archives of Physical Medicine and Rehabilitation, 66, 177-179. White, G. W., Seekins, T., & Gutierrez, R. T. (1996). Preventing and managing secondary conditions: A proposed role for independent living centers. Journal of Rehabilitation, Summer, 14-21. Whyte, W.F. (1991). Participatory action research. New Berry Park: Sage Publications. Table 1 Sample Item from Measurement Instrument 0 1 2 3 Pressure Sores These develop as a skin rash or redness and may progress to an infected sore. Also called skin ulcers, bedsores, or decubitus ulcers. Persons who use wheelchairs are at for developing pressure sores. Table 2 Impairments Reported by Respondents Arthritis 163 (28%) Spinal Cord Injury 81 (14%) Multiple Sclerosis 74 (13%) Stroke 49 (8%) Traumatic Brain Injury 39 (7%) Polio 36 (6%) Amputee 28 (5%) Cerebral Palsy 22 (4%) Muscular Dystrophy 14 (2%) Parkinson's Disease 10 (2%) Spina Bifida 4 (1%) Other 177 (30%) Table 3 Ratings of Secondary Conditions (N = 594) by Adults with Physical Disabilities Living in Montana Rank Condition Percentage Endorsing Average Severity Problem Index 1 Problem with Mobility 80% 2.3 199 2 Joint & Muscle Pain 70% 2.2 168 3 Physical Conditioning Problems 70% 2.2 166 4 Fatigue 70% 2.2 165 5 Chronic Pain 62% 2.3 159 6 Arthritis 57% 2.4 144 7 Difficulties with Access 60% 2.1 143 8 Sleep Disturbance 57% 2.0 127 9 Contractures 50% 2.2 125 10 Depression 40% 2.0 108 11 Spasticity 46% 2.1 107 12 Eating and/or Weight Regulation Problems 48% 1.9 105 13 Sexual Dysfunction 39% 2.2 103 14 Bladder Dysfunction 43% 2.0 98 15 Isolation 41% 2.0 89 16 Written Communication Problems 35% 2.3 89 17 Bowel Dysfunction 42% 1.9 89 18 Visual Impairment 36% 2.1 87 19 Cardiovascular 36% 2.0 81 20 Medication Side Effects 31% 2.1 80 21 Respiratory Problems 36% 2.0 80 22 Hearing Impairments 34% 1.9 70 23 Postural Hypertension 33% 1.7 63 24 Injuries Related to Loss of Sensation 27% 1.9 59 25 Urinary Tract Infection 28% 1.8 58 26 Communication Difficulties 24% 2.0 56 27 Carpal Tunnel Syndrome 23% 2.0 54 28 Osteoporosis 22% 2.1 53 29 Pressure Sores 20% 1.9 42 30 Autonomic Dysreflexia 19% 1.9 42 31 Anemia 18% 1.9 40 32 Diabetes 15% 2.2 36 33 Equipment Failures 17% 1.7 34 34 Heterotrophic Bone Ossification 15% 1.9 33 35 Amputation 7% 2.4 19 36 Alcohol/Drug Misuse 10% 1.6 18 37 Equipment-Related Injuries 9% 1.6 17 38 Care-Related Injuries to Others 8% 1.6 16 39 Care-Related Injuries 8% 1.4 13 40 Equipment-Related Injuries to Others 5% 1.5 8 Table 4 Outline of Self-Help Manual Contents CHAPTER TITLE Primary Objective Rationale GOAL SETTING Introduce a process for setting and clarifying goals. People will develop healthy living habits if good health is important for pursuing meaningful goals. PROBLEM SOLVING Teach skills for generating, implementing, and monitoring solutions. People frequently abandon meaningful goals when goal-directed activities are frustrated by solvable problems. HEALTHY REACTIONS Teach skills for dealing with setbacks and frustrations participants may encounter in working toward goals. People who develop an optimistic attribution style demonstrate better achievement in goal-directed activity. WHAT TO DO WHEN YOU HAVE THE BLUES Develop skills for identifying, preventing, and managing depression. Depressed mood and anhedonia often interrupt and derail goal-directed activity. HEALTHY COMMUNI- CATION Teach skills for attaining goals through clear communication; emphasizing communication with physician and service providers. Much goal-directed activity depends on cooperation with people in the individual's environment. Good communication facilitates cooperation. INFORMATION SEEKING AND MANAGING YOUR HEALTH Discuss how to tell when you may need new information about a health problem, how to look for it, how to evaluate it, and how to incorporate it into daily practice. Health-related needs of individuals vary widely. People do best when they can find and apply specific health-related information rather than when they are simply given general health-related information. INCREASING PHYSICAL ACTIVITY Present information and guidelines for healthy activities, and motivate participants to make simple changes in level and type of activities. Many secondary conditions are related to physical conditioning. EATING WELL Provide strategies for monitoring and changing one's diet. Many secondary conditions are related to weight management. ADVOCACY Provide strategies for organizing and conducting advocacy efforts directed at social systems change. Cooperative efforts are necessary to solve systems problems that impede goal- directed activity (e.g. accessibility of health club) MAINTENANCE Provided strategies for monitoring, rewarding, and maintaining health behaviors following initial changes. People need a plan with specific techniques to sustain health behavior changes over time. Table 5 Demographics of Participants Variable Intervention Group Comparison Group Median Years Since Disability 12.00 9.50 Median Age (years) 38 38 Median Education (years) * 13 14 Median Annual Income $8,000 $15,000 Gender Number of Males Number of Females 10 4 9 11 Race (frequency)* Caucasian African American Asian American Indian Hispanic 10 3 0 1 0 10 0 0 3 7 * Significant at the .05 level. Table 6 Results of Repeated Measures Analysis of Variance Variable Intervention Comparison F p Pre Post F-up Pre Post F-up Secondary Conditions 32.9 25.2 20.6 26.3 24.6 24.3 3.34 .042 CES-D 18.6 10.5 14.5 15.9 18.2 15.0 7.85 .001 Overall Health 1.36 1.29 1.07 .81 1.09 1.14 4.01 .023 Overall Independence 1.42 1.28 .93 1.21 1.46 1.29 1.80 .173 number of secondary conditions for which an M.D. was seen 3.44 2.78 2.33 1.88 1.88 2.35 3.11 .054 number of M.D. visits for each secondary condition 8.22 5.33 4.55 2.27 2.93 5.47 2.43 .100 Note: Lower scores reflect improvements Program Evaluation of the Center for Living & Working, Inc. Health Care Advocate Program with Fallon Community Health Plan, Worcester, MA *According to medical providers, a major benefit of the program was the cost savings. *Cost savings resulted from reduction in utilization of expensive services and time savings for medical providers. *For Fallon, the most important program benefit was a more appropriate utilization of the system. According to health care providers, the benefits Fallon derived from the program included: *healthier patients *increased ability of patients to live independently *improved reputation in the community *more appropriate utilization of the Fallon system *increased utilization of community services rather than Fallon services *cost benefits resulting from providers' time savings *In aggregate, for the 50 cases for whom the detailed utilization study was done, there was a net positive impact of $1,234 per person per month. ALPHA ONE leaders in disability information, services and products HEALTH PROFESSIONALS PROMOTING INDEPENDENCE All health professionals should have the following competencies to effectively work with people who have disabilities. They should be able to: I . Identify and differentiate diagnoses and their associated functional disabilities. 2. Identify and understand how the health care needs of people with disabilities may differ from the health care needs of others. 3. Make their facilities fully accessible to people with disabilities, eliminate barriers and make reasonable accommodations in order to provide effective care. 4. Self examine their personal beliefs about disability through acknowledging the myths and stereotypes of disability. 5. Distinguish and use acceptable language and terminology that respects the "people first" concepts regarding those who have disabilities. 6. Know about the history of the disability rights movement and acknowledge its benefits for individuals and society as a whole. 7. Determine the functional needs of a person with a disability and commit to supporting the person's goals to live independently with a disability. 8. Acknowledge the basis of "client centered" or "consumer directed" service delivery incorporate them into their practice. 9. Understand how "medical necessity" translates to functional independence pertaining to the funding of adaptive equipment or assistive technology. 10. Commit to providing employment opportunities to qualified people with disabilities. 127 Main Street, South Portland, Maine 04106 207-767-2189 (Voice or I'M 1-800-640-7200 (Voice or 1'M FAX 207-799-8346 To reach Alpha One on the Internet: http://www.alpha-one.org South Portland Augusta Brewer Presque Isle Graphics Version Division of Child Development, Disability, and Health (DCDDH)...National Center for Environmental Health (NCEH)...Centers for Disease Control and Prevention (CDC)Home Pages for: Early Hearing Detection and Intervention Program | Fetal Alcohol Syndrome Branch | Developmental Disabilities Surveillance and Epidemiology Section News: Promoting the Health and Wellness of Women with Disabilities, San Antonio, August 2-5, 1999 Division of Child Development, Disability, and Health (DCDDH) Secondary Conditions Prevention Branch About the Branch About the Branch | News and Events | Publications | Disability/Health Grants | New Initiatives | Kids Page | Branch Home Page Mission, Background, and Program Activities of the Branch Mission The mission of the Secondary Conditions Prevention Branch is to foster the development of knowledge and interventions needed to reduce and prevent secondary conditions among persons with congential or acquired physical, cognitive, or sensory impairments thereby promoting and maintaining the health, productivity, independence, and quality of life of those individuals. More than 54 million Americans experience some limitation in their activities as a result of an acute or chronic health problem. This prevalence of activity limitations or disability will likely increase by about 50% by the year 2010 due to overall increased survival and life expectancy among the very young and aging population, thanks to public health successes in preventing premature death and improved medical and assistive technology. Several Federal programs support efforts targeting primary prevention of disabilities but few focus on preventing secondary disabilities or limitations that occur in conjunction with a primary disability. History of the Secondary Conditions Prevention Branch (Timeline) Following an assessment and presentation of Federal laws and programs affecting persons with disabilities in 1986, the National Council on Disabilities recommended a Federal initiative to prevent disabilities through both Federal leadership and the coordination of state local and Federal levels. Two years later in 1988, in recognition of the importance of these recommendations, Congress and the President approved the establishment of a disabilities prevention program and appropriated $3.83 million to CDC. CDC was chosen as the lead agency for this disability initiative, utilizing its long-standing traditional strength in public health surveillance, epidemiology, and technology transfer; and existing programs in injury control, developmental disabilities, lead poisoning and chronic diseases. The CDC's National Center for Environmental Health created the Disabilities Prevention Program now housed in the Secondary Conditions Prevention Branch. For FY 1999, on September 8,1998, under Title II S.2440, the 106th Congressional Senate Committee on Appropriations recommends $2,366,644,000 for the CDC. Of this, the Committee recommends $258,568,000 (1.1%) for chronic and environmental disease prevention. Specifically, the Committee continues to strongly support the CDC disabilities prevention program which provides support to States and academic centers to reduce the incidence and severity of disabilities, especially developmental and secondary disabilities. In addition, the Committee's recommendation includes sufficient funds to the CDC to continue support for the development of a National Limb Loss Information Center - currently funded by the Branch under PA717 to the National Coalition of America for $800,000 FY97-99. Program Aims Celebrating ten years after the original appropriations, the Secondary Conditions Prevention Branch realized a need for a new national program to address the public health needs of persons with disabilities. The program now focuses on persons who are living with impairment or disabilities and aims to: (1) provide national public health leadership for activities targeting prevention of secondary disabilities or complications; (2) build and strengthen the capacity of State and local agencies to maintain disability program; and (3) foster the development of scientific knowledge needed to develop and evaluate effective interventions to prevent secondary disabilities. The Branch strategic Plan is expected to be available in the next month. Overview of Program Activities The Secondary Conditions Prevention Branch:  Monitors the health status of persons with disabilities and the prevalence of secondary conditions.  Increases scientific knowledge of the disabling process, including secondary conditions.  Translates scientific findings into intervention strategies.  Identifies, develops, and evaluates effective interventions.  Disseminates scientific findings to help influence public policy.  Develops collaborative relationships with organizations and associations that are concerned with promoting health and preventing secondary conditions among persons with disabilities.  Develops public health personnel who are knowledgeable about disability issues and trained in the principles and practices of health promotion and prevention of secondary conditions.  Branch Budget by FY FY 1996 - $9,605,000 State capacity 5,615,564 Research 1,820,793 Surveillance 1,138,235 Public Health Training/Information 462,503 Administrative 567,905 (Includes $155,271 PH Info. Dissem. 5.9% Includes 7 FTEs) FY 1997 - $11,000,816 State capacity 4,542,030 Research 3,910,294 Surveillance 719,746 Public Health Training/Information 1,057,661 Administrative 771,085 (Includes $928,631 PH Info. Dissem. 7% Includes 7 FTEs FY 1998 - $11,060,582 State capacity 4,589,391 Research 3,860,675 Surveillance 325,956 Public Health Training/Information 1,093,442 (Includes $1,073,118 PH Info. Dissem. 9.9% Includes 11 FTEs) Staff Contacts Return to Top of Page Last revised: February 11, 1998 (slm) Graphics Version Division of Child Development, Disability, and Health (DCDDH)...National Center for Environmental Health (NCEH)...Centers for Disease Control and Prevention (CDC)Home Pages for: Early Hearing Detection and Intervention Program | Fetal Alcohol Syndrome Branch | Developmental Disabilities Surveillance and Epidemiology Section News: Promoting the Health and Wellness of Women with Disabilities, San Antonio, August 2-5, 1999 Division of Child Development, Disability, and Health (DCDDH) Secondary Conditions Prevention Branch Disability/Health Grants About the Branch | News and Events | Publications | Disability/Health Grants | New Initiatives | Kids Page | Branch Home Page With over 54 million Americans with a disability, the national cost of disabilities is in excess of $170 billion each year, of which an estimated $85 billion is spent in federally-supported programs and services. Even though specific conditions or etiologies are important, these represent only a small portion of the total measure of disability in America. RESEARCH GRANTS: The Secondary Conditions Prevention Branch works to increase scientific knowledge about disability by:  Supporting a national disability surveillance system.  Developing the public health science of disability.  Developing and evaluating the cost-effectiveness of interventions.  Developing measures of participation and identifying elements of the environment that affect how a person participates in everyday living.  STATE DISABILITY AND HEALTH CAPACITY PROJECTS: Through the State Capacity Projects, data is being collected and analyzed to determine the magitude of secondary conditions that may occur in broader domains in an effort to determine human and economic costs within their state. These domains include:  mobility  communication  learning  personal care/home management State Disability and Health Capacity Projects (Supported through the Secondary Conditions Prevention Branch)  Collect disability data for use in developing and implementing disability policies;  Promote the health of people with disabilities by providing interventions to prevent secondary conditions; and  Facilitate disability and health partnerships between state governments and universities. Return to Top Last revised: February 12, 1999 (slm) TELECONFERENCE AUDIO TAPE ORDER FORM An audio cassette of the teleconference entitled: Bridging the Great Divide! Independent Living and Health Care: Individual Services, Advocacy, and Resources is available. If you would like a copy, please fill out the order form below. NAME: CENTER: ADDRESS: TELEPHONE: FAX: Number of sets: x $15.00 = $ (shipping included) Please mail order form and payment to: National Council on Independent Living 1916 Wilson Blvd., Suite 209 Arlington, Virginia 22209 703-525-3406 (v) 703-525-4153 (TTY) 703-525-3409 (fax)