"Although the following event took place in 1992, the issues are still very relevant."

On December 3 and 4, 1992, ILRU, with support provided by The Robert Wood Johnson Foundation through its program entitled "Improving Service Systems for People with Disabilities," convened a study group to examine health care reform and its impact on people with disabilities. The purpose of the meeting, convened in Houston, Texas, was to draw upon the expertise of individuals from the independent living and disability rights, public policy, and health care fields in (1) analyzing current health care reform initiatives, (2) exploring implications of various initiatives for health care and related services critical to the well being of persons with disabilities, (3) formulating strategies for engaging persons with disabilities and disability rights advocates in the health care reform debate, and (4) identifying the types of resources (e.g., informational materials, technical assistance support) that would be most valuable to individuals and organizations concerned with the health care issues of people with disabilities.

Recognizing that a great deal of work on disability-related health care reform was already underway through the efforts of many organizations, the explicit intent of the study group was to promote substantive involvement of representatives of independent living centers and other independent living service programs in health care reform activities. It was envisioned that such involvement could include (1) grass roots activities at local levels to identify health care issues of particular concern to persons with disabilities served by independent living centers, (2) networking with other local, state, and national health care and disability service and advocacy organizations on key issues, and (3) participation in a coordinated national campaign to ensure that important philosophical concepts from the independent living movement are introduced into the debate on health care reform.

This report presents the recommendations of the study group and a summary of developments that have occurred in the six months that have passed since the study group was convened and the release of this report. This report should be viewed in light of the extraordinarily fluid atmosphere that prevails around the health care reform issue. In the months since the study group was convened, efforts have been undertaken by ILRU, The Robert Wood Johnson Foundation, and the National Council on Independent Living to gather as much information as possible about the status of health care reform initiatives proposed by the Clinton Administration, members of Congress, and others.

In recent months, members of the group have heard from informed sources numerous and sometimes conflicting reports about the chances for serious consideration of one or the other of the approaches ostensibly favored by the White House, members of Congress, and various special interest groups. While some planning details from President Clinton's Task Force on National Health Care Reform have appeared in the popular media, the flow of information can best be called a trickle. All this serves to alert the reader that information provided in this report and in subsequent publications of this and other groups needs to be considered in light of the most current proposals for health care reform that are on the table. For this reason, the currency of any information on health care reform should be questioned by all parties before actions are taken based on such information.

In some respects, the interests of the disability community in general--and the independent living movement in particular--in health care reform can be described as ambiguous. The independent living movement emerged in the late sixties and early seventies as a reaction by some people with disabilities to a service system that was dominated by medical, vocational, and other professionals. These professionals, by virtue of academic preparation and professional jurisdiction supported through licensure, accreditation, and payment mechanisms that in many cases required specific provider credentials in order for reimbursement of services, had extraordinary control over the delivery of health care services. Disability rights advocates believed that these professionals often gave little credence to the knowledge or attention to the wishes of the persons they served.

With the emergence of the independent living movement came a strong push by the disability community to "demedicalize" support services needed by individuals with disabilities living in the community. This was accompanied by strongly stated desires by persons with disabilities to play much more active roles in the planning and delivery of services that were intended to address their needs. The rallying cry for the independent living movement became "consumer control," and over the last two decades, approximately 300 community-based service programs operated by and for people with disabilities have been established nationally. Independent living centers provide service options to people with different types of disabilities who want to obtain services in which they, not medical or vocational professionals, make determinations about the goals of the service program, the types of services needed to meet specific goals, and the way in which services are to be delivered.

Given this background, it is not particularly surprising that members of the disability community and independent living movement were somewhat reluctant to wade into the growing debate about health care reform. This debate became increasingly strident in the middle and late eighties as a slumping economy and ever increasing health care costs left more and more people at risk for financial catastrophe from uninsured medical expenditures.

People in the independent living movement have fought hard to establish an identity separate from traditional "professionally" dominated service systems. This fight has included efforts to introduce low cost alternatives, such as peer counseling and independent living skills training, to the expensive services offered by professionals that had been the only option for many people with disabilities prior to the advent of the independent living movement.

Perhaps the issue that contributed most to the reluctance by members of the independent living movement to become engaged in early debates on health care reform centered on personal assistance services (PAS). Personal assistance services for people with disabilities, in the broadest sense, involve the full range of supportive assistance that a person with a disability might require in order to have optimal independence and to function effectively in home, school, job, and social settings.

During the early years of independent living, when many of the movement's leaders were people with physical disabilities and mobility impairment, the term personal care attendant was used most often to describe an individual who might assist the person with a disability in bathing, dressing, toileting, and doing other life activities. Many people today continue to view personal assistance services from this narrow perspective of addressing the needs of people with mobility impairment. However, as the base of support for the independent living movement has expanded to include involvement by increasing numbers of people with sensory, cognitive, and mental health impairments, so has the meaning of the term personal assistance service. Today it includes the use of readers, sign language and oral interpreters, and other individuals who assist people in carrying out everyday activities that might otherwise be difficult to accomplish.

A critical aspect of personal assistance services is consumer control, including guarding against "overprofessionalization" of personal assistance service providers. With a few exceptions, as in the case of sign language interpreters, a deliberate effort has been made to avoid creating another cumbersome and expensive category of professionals that might ultimately limit the availability of services and drive up service costs associated with credentialing of providers. There is ample documentation that most personal assistance services can be provided by people who have received training by the person with a disability requiring the service or by another individual who may or may not be a health professional with experience in delivering the needed service. Such services include provision of clearly nonmedical assistance, such as dressing and eating. They also might include services such as changing urinary catheters and tracheostomy suctioning, that had traditionally been considered the domain of health care professionals.

Experience has shown that many support services can be delivered safely and reliably by persons with little or no formal health care training. While it may be assumed that consumer directed personal assistance services are more cost effective, this should not be the basis for determining the need for these services. These services, as well as more professionalized services, should be provided on the basis of need and appropriateness for the consumer with the knowledge that resulting improvements in function and quality of life will clearly justify the costs.

Independent living concepts emerged from efforts to create more rational and cost effective nonmedical, noninstitutional, consumer directed approaches to delivery of needed services for people with disabilities. This history has undoubtedly contributed to the relatively late entry of disability rights groups in general and the independent living movement in particular into the health care reform debate. Having worked hard to establish service systems that were consistent with the consumer control orientation of the independent living movement, there was reluctance by some to interject the issue of support services for persons with disabilities into the debate on health care. This reluctance stemmed from concerns related to the risk of having disability support services drawn into a service scenario that was, again, dominated by health care professionals. The current health care system, in many cases, relies on service authorizations requiring high-cost medical evaluations and diagnostic procedures. Often such authorizations are made only for services deemed "medically necessary," which in some cases translates into having a service performed by someone with a health care credential, even though the service, such as changing a urinary catheter, may be routine.

Notwithstanding concerns on the part of many people with disabilities associated with "professionalizing" routine support services and the impact of such actions in terms of costs for and accessibility to such services, few would argue that many people with disabilities are at greater risk for certain health problems. In the case of people with mobility impairment, risks for skin and urinary tract problems are increased. In the case of people with chronic health conditions such as cystic fibrosis, risks for respiratory disease are increased. Access to affordable health care services provided by professionals who understand the nature of disability and its influence on development and progression of disease is a critical factor if people with disabilities are to maintain optimal independence in community settings.

Similarly, optimal independence cannot be attained if opportunities for employment and career advancement are not available. Health care plays an important and sometimes subtle role in employment and career options available to people with disabilities. People with disabilities may find an employer unwilling to hire them out of fear that the organization's health insurance premiums might increase substantially because of perceived risks of high cost health care needs of people with disabilities. In another case, the individual with a disability may receive a job offer from an employer, but be faced with the choice of giving up existing publicly or privately funded health care coverage in order to accept the job, while taking the risk of going without health care coverage because the prospective employer's insurance carrier will not cover "pre-existing conditions." These conditions usually include all health conditions associated with the person's disability. In still other situations, people with disabilities who are working find themselves reluctant or unable to take advantage of opportunities for career advancement because pre-existing condition exemptions in health insurance plans preclude them from giving up their current employment in order to take advantage of attractive opportunities.

Although the enactment of the Americans with Disabilities Act (ADA) on July 26, 1990 did much to eliminate discrimination against persons with disabilities in employment, public accommodations (e.g., restaurants, theaters), and governmental facilities, it left health insurance virtually untouched. Because employers can continue to deny health insurance coverage to persons with disabilities and chronic health conditions--or require them to pay premiums for coverage far higher than those paid by other employees--the net effect of ADA as a tool for eliminating discrimination against people with disabilities is diminished. De facto employment discrimination against people with disabilities occurs when they are forced to decline otherwise attractive employment offers because the offer does not include comprehensive health care coverage or includes such coverage at costs so high that it makes acceptance of the position infeasible. Although a recent announcement from EEOC provides interim enforcement guidance on the application of ADA to employer-provided health insurance, the impact of this action in eliminating discriminatory employer practices is not yet clear.

Concerns about the availability of quality health care services, as well as limited employment opportunities and the diminished life potential associated with such limitations, created an imperative for disability groups to enter the debate on health care reform. Early leadership on health care reform and disability issues was provided by the Consortium for Citizens with Disabilities (CCD). With involvement of some 41 organizations representing a broad spectrum of health care providers and disability groups, including the National Council on Independent Living, CCD sponsored a series of working sessions on health care reform and disability. The primary product of these meetings was formulation of statements embodying five principles that need to be considered in any health care reform initiative in order to address the needs of persons with disabilities adequately.

These five principles are as follow:

1) Non-discrimination -- People with disabilities and other chronic conditions of all ages and their families must be able to participate fully in the nation's health care system;

2) Comprehensiveness -- People with disabilities and their families must have access to a health care system that ensures a comprehensive array of health, rehabilitation, personal assistance, and support services across all service categories and sites of service delivery;

3) Appropriateness -- People with disabilities and their families must be assured that comprehensive health, rehabilitation, personal assistance and support services are provided on the basis of individual need, preference, and choice;

4) Equity -- People with disabilities and their families must be ensured equitable participation in the nation's health care system and not burdened with disproportionate costs; and

5) Efficiency -- People with disabilities and their families must have access to a health care system that provides a maximum of appropriate effective quality services with a minimum of administrative waste.

While the study group endorsed the five principals formulated by CCD, it was felt that a sixth principal should be added. This principal, focusing on the issue of consumer control, is somewhat addressed under "appropriateness" but should stand alone. Consumer control is the cornerstone of the independent living movement, and as such it merits individual attention in any discussion of health care reform and people with disabilities.

6) Consumer Control -- People with disabilities should be involved in directing their health care, including such things as choosing and directing a physician, personal assistant, or other provider. In addition, people with disabilities should play a meaningful role in the formulation of public health care policy, participate in the development and monitoring of medical practice standards, and contribute to decisions about benefits and providers that are to be specified in any reformed health care system that may emerge.

The five CCD principles, along with the principal of consumer control, provide an excellent basis for considering the relative merits of various health care reform proposals. However, these principles were not intended to address specific issues of service coverage, administrative structure, delivery mechanisms, and cost containment methods that will ultimately determine the impact of health care reform on various groups and individuals. These issues must be considered and addressed by the various constituencies--including the independent living field--that know and understand the health care and related needs of the disability community.

Prior to December 1992, the independent living constituency had been involved to a limited extent in health care reform activities. A number of leaders in independent living, including members of the National Council on Independent Living board of directors, have been active in health care reform efforts. In fact, at its May 1992 Annual Meeting a resolution on health care reform, including endorsement of the single payor approach and consumer-controlled personal assistance services, was passed by the National Council on Independent Living membership. However, there was no strategy in place to promote constructive involvement of the independent living constituency in health care reform initiatives.

ILRU's decision to convene a meeting on health care reform and persons with disabilities was a logical extension of its work through The Robert Wood Johnson Foundation-supported project "Improving Service Systems for People with Disabilities." This project, operated through eleven independent living centers around the country, is designed to promote innovative approaches for delivering services to people with disabilities--including health care services. All eleven of the demonstration sites address health care needs--albeit to varying degrees--in their projects. Through its support of a national program office at ILRU, The Robert Wood Johnson Foundation has provided funding to facilitate activities designed to support the sites and to promote replication of service innovations developed at the eleven sites that are shown to be effective in improving independent living service delivery.

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Pre-meeting activities. Prior to the meeting, individuals representing a variety of perspectives and political viewpoints were contacted regarding participation in meeting activities. Many individuals expressed interest in participating in the study group, although some were unable to participate because of prior commitments. The study group that met in Houston consisted of 18 persons. The listing of participants and their current affiliations is provided at the front of this report.

Prior to the meeting, participants were sent a packet of information that included journal articles and papers about problems in the health care system and various approaches to addressing these problems. These documents included discussions of the "managed competition" and "single payer" concepts, as well as manuscripts on health care services and disability by a number of authors. Biographical sketches of participants were also provided.

Meeting activities. The study group convened at 9:00 a.m. on December 3, 1992. Following introductions of each of the meeting participants, Lex Frieden provided a brief overview of the purpose of the meeting and turned the meeting over to Marie Oser, who acted as facilitator for the first day's activities. The first day was devoted to a general discussion of the issues by the large group. Following this large group discussion, the participants were divided into three small groups. Each of the small groups was charged with identifying key issues in health care reform.

The large group was reconvened at the end of the day on December 3, and key issues raised during discussion groups were summarized. At this point, the group decided to alter the plans for the second day of the meeting. The decision was made for participantsto self-select into one of three small groups dealing with the topics of (1) policy analysis, (2) formulation of consumer guidelines, and (3) networking and advocacy.

The second day of activities began with consideration of a position statement that had been formulated during the previous evening. The position statement was read to the group and discussed at length by the participants. Several revisions were recommended. The discussion was closed with adoption of the position statement as revised by the group. The revised position statement was overwhelmingly approved by the study group. A copy of the revised position statement is included as Appendix A of this report.

Following approval of the position statement and some general discussion of the format for the remainder of the meeting, the participants went to the small groups that they had chosen on the previous day to discuss the assigned topics. Key points identified by the small groups and refined in the large group discussion that concluded the meeting at the end of the second day are summarized in the following section of this report.

The results of the large and small group discussions from the two-day meeting are summarized below under topical headings. Recommendations for action strategies formulated by the group are summarized as well.

Paradigm shift. There must be a shift away from the current "episodic sickness" model of health care and toward a long-term partnership between provider, consumer, and payor that focuses on achieving the maximum wellness possible for every individual. This is perhaps the most critical issue in the health care reform debate. Rather than continuing a system in which the incentive for providers is to deliver more and higher cost services, the new system should provide incentives for early, low technology, low cost interventions that reduce the likelihood of onset of serious health problems requiring high cost services. Implicit in this discussion is the need to examine the way in which practitioners are used in the health care system. Efforts need to be taken to determine if the least costly professionals who are qualified to deliver primary preventive and interventive care services are being used effectively. More extensive use of qualified non-physician primary care providers, particularly in delivery of health promotion and disease prevention services targeted to persons with disabilities and chronic health conditions, should be given high priority.

Cost effectiveness. Cost effectiveness needs to be stressed over cost containment. Providing appropriate services at the right time will result in greater savings to the system than will efforts to avoid costs by refusing payment for low-cost prevention and early intervention services. This approach will require consumers to take more control over decisions about when to enter the health care system and what types of services are appropriate. However, a better educated consumer who seeks prevention and early intervention services at appropriate times is a goal that will have substantial long-term payoff for the larger health care system. In fact, many people with disabilities have been forced to become knowledgeable about the interaction between disability and health by virtue of the fact that most health care providers have little understanding in this area. Many people with disabilities are accustomed to having to "educate" health care providers concerning their health status, the impact of their disabilities on their general health, and the types of interventions that are most effective in addressing chronic and acute health problems. The experience of persons with disabilities in taking responsibility for maintaining their health may be a model that should be looked at for the larger population.

Access and coverage. Universal access and mandated coverage make more fiscal sense than does the current system of limited access and selective coverage. The notion that not providing health care coverage to some individuals is cost effective over the long term is fallacious. Although individuals or certain groups may have lower costs at specific points in time by denying health insurance coverage to some people, the long- term result of this practice is higher cost for everyone. Since people are not denied health care because they do not have coverage under an existing private or public health care plan, the only real impact of the current "patchwork" approach to health care coverage is that a significant portion of people--those without coverage or those with less comprehensive coverage--tend to avoid seeking health care services until their health problems become serious and require high cost intervention. We all pay more for this behavior in the long term.

Equity. Financing of health care services needs to be arranged in a manner that does not penalize some segments of society in favor of others. At present, individuals who have educational backgrounds or other qualifications that allow them entry into certain job markets are eligible to receive, at little or no cost to themselves, high quality comprehensive health care services. Other individuals, by virtue of diminished educational opportunities and restricted employment options may incur substantial out-of-pocket costs for quite limited health care services from a restricted number of providers. Health care reform efforts should work toward providing a good quality health care plan to every individual. In any plan, costs should be spread equitably so that individuals receiving premium services through a plan that exceeds, either in quality or quantity of benefits, the plan available to the general public incur the costs of premium services. This implies that a mechanism be in place to prohibit the passing on to others the higher costs for premium plans through negotiated rates that favor large employers or groups that intentionally select only those who are in the best of health and are least likely to use health care services.

Portability. Health care coverage should be portable, so that people can pursue careers and life options without fear of catastrophic financial loss associated with changing jobs or life situations. At present, for many individuals with disabilities and chronic health problems, considering new job offers or thinking of relocating to other geographic locations may be tantamount to playing Russian roulette. A new employer may offer a job and health insurance coverage, including coverage of "pre-existing" conditions after some established waiting period--typically six months or one year. However, for the person with a disability or chronic health condition this may represent a choice between (1) accepting the offer and a significant pay increase or new job challenges, or (2) rejecting the offer to avoid risk of financial disaster related to onset of a health problem that is considered to be related to his or her pre-existing condition. This type of limitation in life options is extremely detrimental to persons with disabilities who are forced to stay in "dead-end" jobs not because they lack job skills, but because they cannot gamble with their financial futures by "risking" a job change. Any health care reform should include reasonably priced provisions for comprehensive health insurance coverage to be retained by individuals with disabilities wishing to pursue other life options.

System responsiveness. Any health care reform initiative should include mechanisms to promote professional responsiveness to consumer needs. Although the United States may boast some of the technically best prepared health care professionals in the world, the ability of many health care providers to listen and respond to the needs of consumers is questionable. The independent living movement provides ample evidence of the failure of professionally dominated service systems--both medical and vocational--to respond effectively to the needs of people seeking services. However, there are limitations in the types of services that can be provided through the independent living service model and there will always be a substantial role for medical professionals in service systems designed to address the health care needs of persons with disabilities. An emphasis needs to be placed on revising the educational programs of health care professionals so that as much emphasis is placed on promoting human development--including involvement in making decisions that effect one's life--and on preservation of individual dignity as is placed on technical proficiency in executing clinical procedures. This calls for intervention in entry level professional preparation as well as in the organization and delivery of health care services.

In order to address the key issues summarized above, a number of specific action strategies were developed by the study group. These include:

1. developing and publishing a user-friendly guide on health care reform for persons with disabilities, including an analytical approach for evaluating health care reform initiatives that provides examples of use in assessment of current health care proposals;

2. preparing and disseminating a dictionary of plain language definitions of health care reform terms and examples of their application in debate and discussions;

3. developing and implementing an empowerment-oriented strategy for educating consumers about health care reform;

4. facilitating formation of strategic alliances between disability groups and other groups with shared interests in health care reform issues; and

5. fostering participation of disability consumer groups and advocacy organizations in the health care reform process.

Health care reform is a critical issue to persons with disabilities. Without adequate, appropriate, and accessible health care, other activities designed to promote individual independence and community integration of persons with disabilities cannot yield desired results. Maintaining the best possible health is crucial to people with disabilities if they are to have reasonable opportunities to pursue school, work, family, and social options taken for granted by people without disabilities.

Just as important as the adequacy, appropriateness, and accessibility of health care services is the orientation of health care providers to the way in which such services are provided. One lesson that has been learned through the success of the independent living movement is that all people, regardless of their disability or functional limitations, can assume responsibility for planning and pursuing life goals. The independent living movement has demonstrated the value of substantive consumer involvement in service planning and implementation. The important concepts of choice, self direction, and individual dignity must be integral to any health care reform plan that is adopted. Leaders from the independent living movement can and should play an instrumental role in assuring that these concepts are not forgotten in the rush to address coverage, containment, and consensus.

Access to Health Care, by Bob Griss. Vol. 1, No. 3&4 World Institute on Disability December 1988-March 1989.

Accessibility, Adequacy & Affordability of Health Insurance for Persons with Disabilities or Chronic Illness, Report to Congress, Vol. 1, Exec. Summary 6/27/90. Submitted to NIDRR, by: Berkeley Planning Associates and World Institute on Disability.

Challenges for Managed Competition From Chronic Illness, by Mark Schlesinger & David Mechanic. Health Affairs Supplement 1993.

Managed Care as Barrier to Access: A Policy Analysis, Presented to: Meeting of the Disability Study Group on Access to and Rationing of Health Care, Nov. 8, 1992, by Susan M. Dooha, JD.

Reality Ignored: Health Reform & People with Disabilities, by Sara D. Watson. Journal of American Health Policy March/April 1993.

Research Notes & Data Trends The Health Insurance Coverage of Working-Age Persons with Physical Disabilities, by Thomas J. Burns, Andrew I. Batavia, & Gerben DeJong Inquiry Vol. 28:187-193 (Summer 1991). copyright by 1991 Blue Cross and Blue Shield Assoc. 0046-9580/91/2802-0187.

An Alliance at Risk the Disability Movement and Health Care Reform, by Sara D. Watson. The American Prospect, Winter, 1993.

The Jackson Hole Initiatives for a Twenty-First Century American Health Care System, by Paul M. Ellwood, Alain C. Enthoven & Lynn Etheredge. Health Economics, Vol. 1:149-168 (1992).

The Logic of Health Care Reform, by Paul Starr, 1992. Whittle Direct Books.

On December 3-4, 1992, ILRU, with funding provided by The Robert Wood Johnson Foundation, assembled several of the foremost experts in the country on the health care needs of persons with disabilities. The group included members representing the broad range of political thought, including members of the Bush Administration, Clinton campaign, researchers, educators, service providers, and consumers.

Recognizing that the current time represents the greatest opportunity for substantial health care reform in several decades, the group's mission was to contemplate (1) essential components of health care system reform that address the needs of persons with disabilities, including persons with chronic health conditions, and (2) potential strategies for promoting inclusion of such components in legislative initiatives around health care system reform.

The primary overriding conclusion of the study group was that the needs of persons with disabilities must be a primary consideration at the outset of the design of any health care system reform initiative. Historically, disability issues have been addressed as an afterthought in most health care reform -- including passage of Medicare and Medicaid. This historical fact has contributed to situations of forced dependency for many persons with disabilities at great cost to society both in terms of direct care dollars and reduced participation of such individuals to their communities, states, and nation. Any health care system reform initiatives should seek to ameliorate such situations, resulting in savings to society and improved qualities of life for everyone.

The primary focus of existing health care programs has been on acute care services, rather than on preventive and supportive services designed to minimize the need for more costly acute care services. This focus has required incremental modifications and adaptations that have been difficult to incorporate into programs that were not designed to meet the needs of persons with disabilities.

Now more than ever before, with the aging of the population, with our increased capabilities to save and prolong the lives of persons who experience disabling disease and trauma, and with the knowledge that prevention and health maintenance services are much less costly than acute care services, it is essential that the needs of persons with disabilities receive great attention in the design of any health care system reform package.

The study group strongly endorses the five principles of health care system reform for persons with disabilities articulated by the Consortium for Citizens with Disabilities (CCD). The system as a whole must be: (1) non-discriminatory, ensuring that people with disabilities of all ages and their families have the opportunity to participate fully in the system; (2) comprehensive, providing an array of health, rehabilitation, personal, and support services; (3) appropriate, offering services on the basis of each individual's need, personal choice, and situation; (4) equitable, ensuring that no group of individuals bears a disproportionate burden; and (5) efficient, ensuring that system resources are applied effectively in meeting health care needs.

Furthermore, these principles are consistent with a more rational plan for service delivery that should be developed as an integral component of cost containment. It must be recognized that any cost containment measures--including local budgeting, imposition of deductibles and co-payments, and restrictions on services--are likely to have a disproportionately adverse effect on persons with disabilities. Therefore, any health care reform proposal that contains cost containment provisions must be constructed in a manner that does not place an undue burden for such provisions on individuals who are most likely to use services at above average rates.

A major consideration in the design of a health care system reform plan that meets the needs of people with disabilities is the benefit package. Again the study group endorses the broad package principles outlined in the CCD statement. These benefits, which include access to preventive, rehabilitative, and long-term services, are needed by persons with disabilities to maintain productive, independent lifestyles. At the same time, the group recognized that economic realities strongly influence the availability of services for all individuals, not just persons with disabilities.

Therefore, it is imperative that people with disabilities, along with individuals representing other segments of the population, be actively involved in the design of the benefit package and its administration. Top-down decision making, such as occurred with the Oregon Plan, without adequate input from the disability community is likely to result in the devaluation of the needs of people with disabilities, a program that inadequately addresses these needs, and ultimately greater costs to individuals with disabilities and society as a whole.

Now is a time of change for the system of health care as we know it. There is much to be learned from the empowerment principles which guided the efforts of the disability rights movement. One of the most important contributions persons with disabilities can make to the health care system reform debate is to provide input to redefine the concept of health and the way in which persons participate in the management of their health care needs. We all deserve to work together toward a system that better meets the needs of all people. Incorporating key features of the CCD position statement, the Study Group supports a health care system reform initiative that is based on empowerment and education of all persons and that: (1) expands the definition of "health" to include prevention services, rehabilitative therapies, assistive technology, and ongoing health-related maintenance services; (2) distributes all health-related expenses equitably throughout the population; and (3) restructures our health care delivery system to support effective consumer-directed health care management.

ILRU (Independent Living Research Utilization) 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 U.S. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at 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 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 U.S. and Canada. For more information contact,  ILRU; 2323 S. Shepherd, Suite 1000; Houston, Texas 77019; (713) 520-0232, 520-5136 (TDD); (713) 520-5785 Fax

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.