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 on 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.


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.

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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.