>From the web page http://www.ilru.org/mgdcare/rrtcnewsletter.html "Legal Protections for People with Disabilities in Managed Care" Mary Anderlik and Wendy Wilkinson, Investigators from the Spring 2000 Issue of the Managed Care Chronicles supported by the RTC on Managed Health Care and Disability and the Southwest Disability and Business Technical Assistance Center Table Of C ontents I. About the Research and Training Center on Managed Health Care and Disability II. What Constitutes Discrimination in Managed Care? III. Sources of Law for Managed Care 101 IV. Title II Integration Mandate Interpreted by Supreme Court V. In the Wake of Olmstead v. L.C. - How to Integrate People with Disabilities into the Community a. Exploring the Scope and Power of the Title II Integration Mandate VI. Challenging HMO Contractual Arrangements Under Title III VII. Applicability of Title III to Health Insurance Plans VIII. Section 501(c) of the ADA IX. Associational Discrimination X. Using the Medicaid Act to Resolve Individual Complaints and Achieve Systemic Change XI. Medicaid Managed Care and the Implications of the BBA XII. Health Care Financing Administration XIII. State Law Protections XIV. Individual Claims - Use Informal and Formal Processes XV. Medicaid and Medicare XVI. Technical Assistance Resources on the ADA-Regional Disability and Business Technical Assistance Centers XVII. RTC on Managed Health Care and Disability XVIII. Resource Directory Permission is granted for duplication of any portion of this newsletter, providing the following credit is given to the project: Developed as part of the RTC on Managed Health Care and Disability and the Southwest Disability and Business Technical Assistance Center. c 2000 ILRU I. About the Research and Training Center on Managed Health Care and Disability R20;Legal Protections for People with DisabilitiesR21; is one of six research projects of the Research and Training Center on Managed Care and Disability (RTC-MC&D). Partners in the RTC are the National Rehabilitation Hospital Research Center (NRH-RC) in Washington, D.C. and ILRU (Independent Living Research Utilization) in Houston, TX. The Center began operating in June of 1997 and is funded by the National Institute on Disability and Rehabilitation Research (NIDRR). 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 Health Law and Policy Institute, based at the University of Houston and ILRU are collaborating on the R20;Legal ProtectionsR21; project. Data is being elicited 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. The research findings will be used to: (1) generate training and educational materials designed to enhance the ability of consumers and advocates to address barriers in managed care arrangements on an individual and systemic basis; and (2) develop materials for policy makers that identify gaps in the system of protections. II. What Constitutes Discrimination in Managed Care? People with disabilities, along with other individuals without disabilities, may receive less than adequate medical care in managed care arrangements. Both groups may experience problems due to the complexity and lack of flexibility in some managed care organizations (MCOs), but the stakes are often higher for people with disabilities. There are a number of federal and state laws and regulations that affect the terms and conditions of the delivery of health care to individuals in MCOs. They can be used in a number of different ways, depending on the type of MCO and the practice being challenged. Federal and state anti-discrimination laws may be used to challenge practices that result in inferior treatment for individuals with disabilities; other laws may be used to challenge practices that may not constitute discrimination per se, but deny access to needed health care. Distinguishing what may be considered discrimination based on disability in health care from generally poor administration or treatment is a difficult exercise. To date, a number of suits have been brought against state agencies responsible for Medicaid managed care programs and MCOs using the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. These challenges have met with varying degrees of success. We will highlight some of these cases in this newsletter. What we have learned from these cases is that there is power in these laws. Many managed care arrangements, by virtue of their design and purpose, tend to perpetuate discrimination against people that are or are perceived to be higher users of health care services, a group that arguably includes more individuals with disabilities than non-disabled individuals: * Marketing efforts may be designed to discourage enrollment of individuals who are higher users of health care services or those who are perceived to be higher users. * Capitated payment structures that are not risk-adjusted create tremendous incentives (a) to deny needed treatments, access to specialists, proper medication and other services to individuals with greater-than-average health care needs, and (b) to avoid enrolling or caring for these individuals. * Rating systems may be used to penalize physicians who treat individuals with greater-than-average health care needs. * Managed mental health care organizations may stop referrals to psychiatrists who tend to provide more comprehensive treatment. * Referral and R20;documentation of needR21; processes may interfere with established relationships with health care professionals that are essential to the well-being of individuals with behavioral health care needs. * Emphasis on primary care and limitations on access to specialty care may have a tremendous impact on individuals with disabilities because primary care physicians may lack the expertise, time, or inclination to care for people with disabilities. * Review of medical decisions of physicians through utilization studies may result in termination of physicians who are costly to an MCO because they prescribe more expensive treatments, medications and services. * R20;Medical necessityR21; criteria that call for R20;substantial improvementR21; or R20;restoration of functionR21; as conditions for authorization of treatment, medication or equipment may discriminate against individuals with certain types of disabilities who cannot meet these standards because of their disability. * The complexity of referral procedures and complaint and grievance processes, and the materials that describe these aspects of managed care, may create tremendous barriers for individuals with cognitive or learning disabilities. III. Sources of Law for Managed Care 101 In this special issue we are focusing on the major federal anti-discrimination laws and their applicability to managed care arrangements. We will also review a few of the other laws that can be used to assure that states are arranging for appropriate care, providing procedural due process protections, and developing assessments of the services delivered under their Medicaid managed care programs. Major Federal Legislation * Employer-Provided Benefits, Public Services, and Public Accommodations: 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) * Group Health Plans: Health Insurance Portability and Accountability Act of 1996 (HIPAA) 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) State Law * Managed care (R20;patient protectionR21;) laws * Civil rights laws * Insurance laws * Deceptive Trade Practices Acts and other consumer protection laws * Common (case) law 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 preferred provider organizations. Public Health Insurance Federally funded programs are subject to the Rehabilitation Act, and state and local public services are subject to Title II of the ADA. Basic requirements of both acts include nondiscrimination, reasonable accommodation/modifications, and community integration. State civil rights laws may provide additional protections. The BBA provides that Medicaid beneficiaries in Medicaid managed care retain their right to a state-level fair hearing and imposes other requirements on Medicaid managed care, such as a R20;prudent laypersonR21; standard for emergency treatment. HCFA is preparing to issue final regulations for Medicaid managed care programs, but as of the date of this newsletter they have not been published. Private Health Insurance Employer-provided benefits are subject to Title I of the ADA, and R20;public accommodationsR21; (this includes doctorsR17; offices, clinics, and hospitals and may include insurance policies) are subject to Title III of the ADA, which has its own nondiscrimination, reasonable modification, and integration mandates. HIPAA also contains anti-discrimination provisions that apply to group health plans. It prohibits discrimination against individuals based on health status and regulates use of pre-existing condition clauses, among other things. For private health insurance, the availability of basic managed care protections, such as the R20;prudent laypersonR21; standard for emergency treatment, depends on state law. State insurance regulations apply to health insurance purchased by individuals and group health plans purchased by employers. State insurance commissioners provide oversight and regulate the business activities of insurance companies. They generally regulate insurance marketing practices, review whether policies and premiums are reasonable, and assure that claims are paid in a timely manner. Employers that set aside funds and employee premiums to pay for health coverage have self-funded plans. Self-funded plans are not regulated by states but are governed by the Employee Retirement Income Security Act (ERISA). If these plans are offered by a private sector employer or a bona fide union, the U.S. Department of LaborR17;s Pension and Welfare Benefits Administration regulates them. IV. Title II Integration Mandate Interpreted by Supreme Court The United States Supreme Court, in Olmstead v. L.C., found that institutionalizing a person with a disability who can benefit from living in the community and wishes to do so constitutes discrimination because it severely diminishes the individualR17;s ability to interact with family and friends, work and make a life for him or herself. The case was brought by two Georgia women with disabilities (mental retardation and mental illness) who were placed in state-run institutions in order to receive the services they needed, although their physicians had said that they were able to live and receive services in a community-based setting. The women argued that the stateR17;s failure to provide services in a community-based setting violated a regulation implementing Title II of the ADA, 28 CFR 35.130 (d) which requires that public entities provide their services R20;in the most integrated setting appropriate to the needs of qualified individuals with disabilitiesR30;.R21; [In a setting that R20;enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.R21;] The setting must be appropriate to the needs of an individual and could include home and community-based arrangements. As the Court noted, the extent of the obligation to make a community placement may be modified by Title IIR17;s R20;fundamental alterationR21; defense. In applying it to this situation, the Court said states may consider not only the cost of providing community-based care to individuals, but also the range of services provided to other individuals with disabilities and the statesR17; obligation to mete out those services in an equitable manner. V. In the Wake of Olmstead v. L.C. - How to Integrate People with Disabilities into the Community In Olmstead v. L.C. the Court laid out the R20;roadmapR21; that states must use to develop their integration plans. The Court indicated that states may demonstrate compliance by showing that they have comprehensive and effective plans for placing qualified individuals with disabilities in less restrictive settings and waiting lists that move at a reasonable pace not influenced by a stateR17;s attempts to keep its institutions fully populated. The role of people with disabilities in this process is key. January 14: Letters and Preliminary Technical Guide Sent to State Medicaid Directors The OCR began consulting with State Medicaid Directors, members of the long-term care technical advisory group, and with people with disabilities to help states develop their R20;Olmstead Community Integration Plans.R21; The letter outlines what OCR expects from the states and offers technical assistance and support from the agency. The accompanying technical guide outlines the responsibilities of the states, including the principles that should be addressed, and recommended practices, to provide states with a foundation from which to start. The OCR does not recommend one model plan, noting that each state may take a different approach. What is clear is that persons with disabilities must be included in all phases of the process. States are required to consider the methods that should be employed to R20;ensure constructive, on-going involvement and dialogue and assess what partnerships are needed to ensure that any plan is comprehensive and works effectively.R21; Other principles include: * Taking steps to prevent or correct current and future unjustified institutionalization of individuals with disabilities. * Ensuring the availability of community-integrated services. January 4: DHHS, OCR Sends Sample Olmstead Letter to Governors with Copy of Document Sent to Medicaid Directors R20;We encourage you to develop and implement such plans, and to involve individuals with disabilities and other stakeholders in the process of design and implementation. This department stands ready to assist you in these efforts.R21; The Role of Advocates in Developing State Plans On March 9, 2000 the NCIL (National Council on Independent Living) National Advocacy Training Project held a national teleconference on R20;Making Olmstead Work in Your State.R21; Nationally known advocates and experts on Olmstead interpreted the decision from the standpoint of clarifying what states must do, and recommended strategies for people with disabilities to work with states to develop plans that comply with the letter and spirit of this important decision. They broke the decision down into pieces to demonstrate how each component of the decision should be interpreted and implemented, for example: What if a state treating professional fails to determine that the community is the most integrated setting appropriate to meet an individuals needs, can the assessment of the stateR17;s treating professional be challenged? Yes, the decision leaves room for the stateR17;s treating professionalR17;s assessment to be challenged. When the Supreme Court explained its two-part test it said that states may R20;generally rely on the reasonable assessmentsR21; of their own professionals as to whether an individual is appropriate for community-based services. Certainly, R20;generally rely onR21; does not mean total deference to the treating professionals on this matter. While the state can probably not simply ignore the assessments of the state professional, the Court seems to leave room for an individual to ask for another assessment from an independent evaluator or for the state professionalR17;s opinion to be challenged. Also the Court said the state treating professionalR17;s assessment must be R20;reasonable.R21; While the Court did not define the elements of a R20;reasonableR21; assessment, a strong case can be made that, to be reasonable, an assessment must be made by a qualified professional who is familiar with relevant professional standards and the capacities of community systems, especially services that are now available to meet even the most challenging of needs, for example, wrap-around, crisis and respite services. An assessment may also be challenged as unreasonable if it is the product of a flawed process. For example, it is common for institutions to judge an individual R20;not readyR21; for the community solely because there is no community placement currently available for that individual. Institutional staff that determine individuals to be ready for discharge only if and when services become available (i.e., a community R20;slotR21; opens up) are not making R20;reasonableR21; assessments of community readiness. Such assessments should be based on the capacities and needs of the individual with a disability, and on whether appropriately crafted community services can meet those needs. Whether appropriately crafted services are currently available in the community has no bearing on whether the community is the most integrated setting appropriate for an individual. (Statement prepared by National Association of Protection & Advocacy Systems, Inc. See Resource Directory for information on obtaining the tape of the teleconference and the resources provided.) Filing Individual Complaints If someone encounters a barrier imposed by the state Medicaid program, to get them, a family member, or a friend out of an institution, they may file a complaint with the Office for Civil Rights in the Department of Health and Human Services. V. a. Exploring the Scope and Power of the Title II Integration Mandate The integration mandate has been used by Protection and Advocacy Agencies (P&As) in a number of cases to assure the provision of the services, medication, and equipment necessary to enable individuals with disabilities to continue living independently in a community setting. In Sanon v. Wing, the court overruled the decision of the State Department of Health and city agencies to terminate home care services and place three individuals with disabilities in nursing care. The court held that Title II of the ADA required that individuals with disabilities have access to in-home care and that allowing such would not cause a R20;fundamental alterationR21; of the State Medicaid program. In Re J Curtis H (Cal. DHS, Sept. 4 1998), an individual with multiple disabilities required wrap around services to maintain him in the community. His doctor verified that these services were necessary. The Department of Human Services denied his request stating that these services were not medically necessary. The Administrative Law Judge ruled for the individual, finding that these services were necessary for the individual to remain living in the community. In Ivey v. State Dept. of Health Care Policy and Finance/Mental Health Capitation Program (1998), the P&A challenged the stateR17;s implementation of the assessment process which was part of the new Medicaid mental health care program. The new program required that all Medicaid recipients discontinue treatment with their existing providers. An exemption would only be granted if it was proven to be in the R20;best clinical interestsR21; of the recipient, which would be determined through an assessment. In this case, the court found that the state did not conduct an appropriate assessment. In addition, the court found that R20;overwhelming evidence was presented that the individuals in question would end up in institutions if they were unable to continue with their current providers.R21; In Adam Cale v. Illinois Department of Public Aid, the Illinois P&A is arguing that a threatened reduction in home health services for an individual with a disability would violate the Title II integration mandate because if the individual is not allotted the necessary hours the individual may have to move into an institution. In Blackman v. Mississippi, the Mississippi P&A sued a state hospital for violation of the Title II integration mandate because the hospital did not provide all anti-psychotic medications on the same basis. The state hospital used a voucher system for provision of medication; a voucher was needed to prescribe certain types of medication, including certain types of anti-psychotic medications. No vouchers were needed to prescribe older types of anti-psychotic medications. Statistics were presented which showed that 30-70 percent of individuals with schizophrenia who do not respond to older drugs do improve after taking the newer ones. The administration of the vouchers in this way inhibited the ability of individuals to obtain the treatment they needed to live in the community. (The suit was dropped after the state provided assurances that a system was in place that provided access to medications regardless of brand or expense.) In Chris S. v. Geringer, the Wyoming P&A brought a class action suit against the state for violations of the Medicaid Act and the ADA, alleging that the state failed to provide adequate transitional services, including employment and health care, while the plaintiff was in the state hospital. Without such services, the plaintiff was at risk for re-institutionalization. The dispute resulted in a settlement agreement that created the R20;Partnership for Resolution of Mental Health Issues in Wyoming,R21; a coalition of the P&A, the State Alliance for the Mentally Ill, and representatives of the Wyoming Department of Health. VI. Challenging HMO Contractual Arrangements Under Title III HMOs and other MCOs may have contractual arrangements with health care providers that create incentives for those providers to avoid or undertreat individuals with disabilities. Problems can arise where an HMO pays a provider a set fee per patient (capitation), ties bonuses and other incentive fees to rates of usage of services (utilization goals), or imposes prescription drug limitations or restrictions on certain types of treatment. Innovative cases have been brought challenging contractual arrangements that contain incentives for providers to delay or deny care to individuals with disabilities. The ultimate outcome is still unclear, but at least one of these cases has passed a significant legal hurdle. In Zamora-Quezada v. HealthTexas Medical Group of San Antonio, 34 F.Supp.2d 433 (W.D. Tex. 1998), the plaintiffs are two physicians and 13 patients who are alleging that their Medicare HMO delayed or denied them full and equal enjoyment of medical treatment and services in violation of Title III of the ADA and the Rehabilitation Act. In the complaint, the patient-plaintiffs claim that they were forced to endure long waits or medical care was delayed or denied them, while nondisabled patients received better treatment, and that the HMOR17;s financial arrangements make treating people with disabilities more costly to providers. The physician-plaintiffs claim that they were terminated by the HMO because they advocated for their disabled patients (i.e., they suffered associational discrimination). The HMO moved to dismiss the case. In an important ruling, the court denied the motion to dismiss. The HMO maintained that all of its decisions were based on actuarial, statistical and empirical data, and so were protected from scrutiny under the ADAR17;s insurance R20;safe harbor,R21; 501 (c). The court noted that Medicare HMOs are prohibited from discriminating in coverage on the basis of health history or current health status, meaning they cannot engage in traditional insurance risk rating. Additionally, the court pointed out that the plaintiffs alleged discrimination was based on clinical evaluations, not ratings for insurance purposes. The HMO also maintained that it was not covered by Title III. The court noted that Title III of the ADA applies to entities that have a right to control a public accommodation. If the HMO regulated health care decisions made by the medical group, including referrals and admissions, and attempted to monitor and influence physiciansR17; utilization patterns, it would be covered by Title III. The HMO also argued that the case was one of disparate impact rather than intentional discrimination. It argued that utilizing cost-control measures will result 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 plaintiffsR17; specific allegations that delays and denials were disability-based were sufficient to raise genuine issues of fact for trial. VII. Applicability of Title III to Health Insurance Plans While it is clear that an insurance office is a public accommodation covered by Title III, courts are divided over whether Title III applies to (a) insurance policies that are not purchased by a consumer entering an actual insurance office, and (b) the contents (terms and conditions) of insurance policies. Of the federal Court of Appeals (the highest courts to consider the issue thus far, one level below the U.S. Supreme Court), the First, Second, and Seventh Circuit Court of Appeals have interpreted Title III to include insurance policies, while the Third, Sixth, and Ninth Circuits have gone the other way, at least where the policy was provided by an employer. In Carparts Distribution Center v. Automotive WholesalerR17;s Assn., 37 F.3d 12 (1st Cir. 1994), the health plan at issue was purchased by the employer through a trade association. The plan imposed a special, lower lifetime cap for AIDS-related medical expenses, allegedly after learning of plaintiffR17;s diagnosis with HIV/AIDS. In evaluating whether the health plan itself was covered by the ADA, the Court scrutinized the definition of public accommodations and found that public accommodations are not limited to physical structures. The court noted that by including travel services among the list of services considered R20;public accommodations,R21; Congress clearly intended to cover providers of services that do not require a person to physically enter an actual physical structure: R20;It would be irrational to conclude that persons who enter an office to purchase services are protected by the ADA, but persons who purchase the same services over the telephone or by mail are not. Congress could not have intended such an absurd result.R21; The court also referred to the legislative history of the ADA, noting that there was no mention of placing physical boundaries on public accommodations1. See also: Pallozzi v. Allstate Life Ins. Co., 198 F.3d 28 (22 Cir. 1999) and Doe v. Mutual of Omaha Ins. Co., 179 F.3d 557 (7th Cir. 1999), cert.denied S.Ct. (2000) (broader interpretation) versus Ford v. Schering-Plough Corporation, 145 F.3d 601 (3d Cir. 1998), cert. denied, 119 S.Ct. 850 (1999) and Parker v. Metropolitan Life Ins. Co., 191 F.3d 1006 (6th Cir. 1997), cert. denied, 118 S.Ct. 871 (1998), Weyer v. Twentieth Century Fox Film Corp., (narrow interpretation). VIII. Section 501(c) of the ADA Title I of the ADA prohibits discrimination in all terms, conditions and privileges of employment, including health benefits. Employers are also prohibited from contracting with an insurer or other entity that discriminated against its employees with disabilities. Titles II and III also contain nondiscrimination mandates that can be used to attack discriminatory health care practices. The nondiscrimination requirements in Title I provide that employers cannot refuse to hire, terminate or treat an employee with a disability differently because of concerns about health benefit plan costs and coverage. Employers also cannot refuse to hire qualified applicants who have dependents with disabilities because of any concerns about the potential impact on health care costs. Employees with disabilities must be given equal access to any health benefits provided to other employees. Lower levels of coverage for dependents are permissible. Section 501(c), located in Title V of the ADA, addresses the practices of insurers. Section 501(c) states that Titles I through IV should not be construed to prohibit or restrict (1) an insurer or other entity that administers benefit plans from underwriting risks, classifying risks, or administering such risks in a manner based on or not inconsistent with State law; (2) a person or organization from establishing, sponsoring, observing or administering the terms of a bona fide benefit plan based on underwriting risks, classifying risks, or administering such risks in a manner based on or not inconsistent with State law; or (3) a person or organization from establishing, sponsoring, observing or administering the terms of a bona fide benefit plan that is not subject to State laws that regulate insurance (ERISA prevents the application of state insurance regulations to employer- sponsored self-funded health plans). However, Section 501(c) may not be used as a R20;subterfuge to evade the purposes of Titles I and III.R21; The EEOC, in 1993, issued Interim Enforcement Guidance on Application of ADA to Disability Based Distinctions in Employer Provided Health Insurance in order to explain its interpretation of Section 501(c). The EEOC takes the position that distinctions in health insurance are only subject to scrutiny under the ADA if they are R20;disability-based.R21; A distinction is disability-based if it singles out a particular disability, a discrete group of disabilities, disability in general or any treatments related to a particular type of disability. In giving meaning to the concept R20;disability-based,R21; the EEOC, in effect, defines two points on a continuum from non-disability-based to disability-based. At the non-disability-based end of the continuum are broad distinctions that (a) apply to the treatment of a multitude of dissimilar conditions and (b) constrain individuals both with and without disabilities (although they may have a greater impact on individuals with disabilities). Examples offered by the EEOC are lesser benefits for eye care as well as R20;mental/nervousR21; conditions, and limitations on elective surgeries or experimental drugs. At the disability-based end of the continuum are distinctions that single out a particular disability, discrete group of disabilities, or disability in general. The primary barrier to the recognition of the traditional distinction between R20;mental/nervous conditionsR21; and R20;physical conditionsR21; as disability-based, and therefore subject to scrutiny under the ADA, has been the Rehabilitation Act cases. However, there are good reasons for this issue to be reviewed anew under the ADA. The introductory provisions of the ADA issue a powerful challenge to the long-held but false assumptions that perpetuate discrimination. The archaic nature of the mental/physical distinction is revealed in the coupling of R20;nervousR21; with mental, and the assumption that mind and body can be neatly separated. According to the EEOC, if a distinction in insurance is disability-based, it is illegal unless it can be justified by R20;sound actuarial data.R21; An insurer must use legitimate insurance risk classifications and actuarial data to prove that the distinctions are legal or that the distinction is necessary to prevent drastic changes in the things the plan offers (premiums, scope of coverage, etc.) that would significantly affect the level and quality of benefits offered to others in the plan. In addressing the insurerR17;s burden of proof once a showing of disability-based discrimination has been made, the EEOC notes that data that are R20;seriously outdated and/or inaccurate,R21; e.g., R20;based on myths, fears, or stereotypesR21; or R20;false assumptions... or ...assumptions that may once have been, but are no longer, true,R21; are not legitimate. The same considerations should apply in the stage one analysis of whether a distinction is disability-based and therefore subject to scrutiny under the ADA. IX. Associational Discrimination Title III of the ADA prohibits discrimination based on association. Public accommodations must not discriminate against R20;an individual or entity because of the known disability of an individual with whom the individual or entity is known to have a relationshop or assocation2. In the interpretive analysis accompanying this section, the DOJ notes that the term "entity" in this section was added to ensure that those entities "such as health care providers, ...and others who provide professional services to persons with disabilities are not subjected to discrimination because of their professional association with persons with disabilities." This section could be used to challenge physical credentialing and de-selection practices intended to rid plans of physicians that treat high cost patients. X. Using the Medicaid Act to Resolve Individual Complaints and Achieve Systemic Change The Medicaid Act has been used on its own and along with the ADA and Section 504 to challenge health care decisions and practices that harm people with disabilities. Medicaid is a joint venture between the federal and state governments to help states provide medical care to eligible low-income individuals. The federal government establishes broad national guidelines that the states must follow. The approval process for waivers of Medicaid requirements can be used to assure that people with disabilities can obtain more meaningful access to health care. States may choose the managed care providers and structure their contracts. Getting involved at the planning level can significantly affect what level of services eligible individuals with disabilities will receive. This R20;great potential for significant changeR21; can be exploited through influencing decisions regarding the: * Basic structure of the long-term care program; * Who will be guaranteed eligibility for services; * What services will be covered and how they will be defined; * Which state agency will oversee the program; * Procedures for ensuring consumer involvement and choice in service coverage decisions; * Procedures for ensuring consumer and family involvement in monitoring quality; * Establishment of grievance mechanisms; * Development of the provisions of the state's contract with MCOs; and * The criteria by which MCO performance will be judged. Visit the Families USA 3 Web site at http://www.familiesusa.org/ for a detailed R20;roadmapR21; of how individuals can get involved in the design and implementation of Medicaid managed care networks in their state. Visit the National Health Law Program Web site at http://www.nhelp.org/pubs/adwaiverrepeal.html to review R20;Medicaid Waiver Repeal Implications for Post-waiver AdvocacyR21; to understand the implications for advocates of the Balanced Budget ActR17;s repeal of Medicaid managed care waiver requirements. XI. Medicaid Managed Care and the Implications of the BBA The Social Security Act authorizes freedom of choice waivers to implement Medicaid managed care programs. The BBA permits states to implement managed care on a mandatory enrollment basis for most individuals with disabilities without applying for a freedom-of-choice waiver. With the relaxation of this requirement, it is even more important for advocates to get involved during the planning stages of these programs. The BBA does require that plans meet certain standards. Section 4705 of the BBA states that contracts for Medicaid managed care under Section 1903(m) of the Social Security Act must develop and implement quality assessment and improvement strategies. R20;At a minimum, these strategies must include access standards, measures that examine other aspects of care and services directly related to improving the quality of care (e.g., grievance procedures and marketing standards), procedures for monitoring and evaluating the quality and appropriateness of care and services that Medicaid enrollees receive. . . .R21; (A workgroup is currently developing a regulation that will implement this provision of the law.) As a result of the relaxation of the waiver requirement, more and more states are moving toward placing Medicaid recipients into managed care programs. Individuals in the public system generally have more serious disabilities. They also face additional barriers such as poverty and have less access to the tools needed to negotiate through the complex health care maze than the privately insured population. Hastily developed programs, implemented without proper protections and guarantees could have tremendous impact on the delivery of health care to the individuals with disabilities who have the greatest health care needs. XII. Health Care Financing Administration HCFA, an agency of HHS, has developed a number of guidance documents designed to assist states in implementing and administering Medicaid managed care programs. * Guidance on Coverage of Medical Equipment This guidance was issued in response to the Second Circuit Court of Appeals opinion in DeSario v. Thomas, in which the court upheld a stateR17;s use of the R20;Medicaid population as a whole testR21; in deciding whether to approve coverage of medical equipment. This test required a recipient to demonstrate that R20;absent coverage of the item requested, the needs of most Medicaid recipients would not be met.R21; The Medicaid program at issue, the mandatory home health services benefit, covers medical supplies and equipment for home use. HCFA responded to this decision by quickly issuing a guidance letter to all state Medicaid directors. The agency unequivocally stated that this type of test may not be used. The guidance noted that states are allowed some discretion in setting the standards for coverage of these items, subject to certain criteria (i.e., medical necessity) and may develop pre-approved lists as a matter of administrative convenience. However, if they choose to do so, they must also have a procedure for requesting items not on the pre-approved list. * Guidance for States Considering the Development of Medicaid Managed Care Programs for Persons With Special Health Care Needs This guidance is intended for states to use in R20;designing and implementing quality strategies for persons with special health care needs.R21; Among the items addressed in the guidance is the provision of services to assist individuals with cognitive disabilities in understanding the enrollment process. * Guidance on Disclosure of Physician Incentive Plan Information to Beneficiaries This guidance requires MCOs to disclose their financial reimbursement arrangements with providers to R20;current, previous, and prospective enrollees upon request.R21; The type of information that may be requested includes information on the types of physician incentive plans used and how they affect referral services. XIII. State Law Protections There may be additional state law protections you can draw upon to assist you in addressing barriers encountered in managed care arrangements. Look for provisions that: * Allow people with chronic or life-threatening illnesses to obtain standing referrals to specialists, select a specialist as a primary care provider, and stay with a familiar provider through a transitional period when various changes occur; * Require development of detailed access plans describing how managed care organizations will meet the needs of people with disabilities; * Prohibit discrimination based on health status or utilization of services; * Offer access to non-formulary drugs upon a showing of need; and * Offer prompt review by qualified personnel of grievances and denials of care (in many states, MCOs can be held to a specific timetable, and in some states, a failure to act within the specified timeframe is treated as an approval of care). States may also prohibit certain practices, for example, restricting providers from speaking freely with patients or using R20;economic profilingR21; to avoid or get rid of providers that treat a high-cost patient population. State anti-discrimination laws may provide protections that exceed those in the ADA or allow remedies that are not provided under the ADA. Where someone suffers an injury, state common law may provide a remedy. Cases have been brought against managed care organizations for bad faith, negligence, breach of fiduciary duty, breach of contract, negligent misrepresentation, intentional infliction of emotional distress, and interference with the physician-patient relationship. XIV. Individual Claims--Use Informal and Formal Processes Step 1: Informal Process * Check the policy or employee handbook carefully to identify what language can be used to argue that the treatment, equipment or medication is covered. Find out what role your provider may have to assume in this process. * Do they submit the claim or request for authorization? * After you have provided all requested information your claim or request should be processed within a certain number of days. * If your claim or request is denied the reason for denial should be stated in the notice you receive. * Check your policy or employee handbook for the companyR17;s appeal procedures. * Generally appeals must be in writing. Step 2: Formal Grievance/Administrative Complaint * File a formal grievance with the MCO. * File a complaint with the state insurance department (or the special managed care consumer assistance office, if your state has one). State agency interventions often result in favorable decisions for the consumers. These complaints generally require: Name, address, and phone number; Brief narrative of your case, giving full explanation of the problem and what type of insurance is involved; The name of your insurance company, policy number, and the name of the MCO contact involved; and Any documentation that supports your case including phone notes and a record of all contacts and content of conversations with the MCO representative. * If the plan is self-funded (governed by ERISA) and offered by a private sector employer or bona fide union, complaints may be registered with the U.S. Department of Labor (DOL) Pension and Welfare Benefits Administration. The DOL is not charged with interpreting plans or mandating resolution but they may investigate the complaint. * For denials of services, request 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. * For ADA and Rehabilitation Act complaints involving Medicaid or Medicare, file an administrative complaint. General Tips for Consumers * Statistics released by states indicate that plans reverse about 30-40 percent of denials upon internal review. (Independent review results in a decision for the consumer in about 40-60 percent of cases.) * Act quickly, if you wait, you may lose your right to file a grievance or appeal. If help is available, use it * Use the planR17;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. * The process can be intimidating, and people arenR17;t always as helpful as they should be. ThatR17;s why it is important to be clear about your objective (why the effort is worth it), and to use whatever help is available. XV. Medicaid and Medicare HHS, through the Office for Civil Rights (OCR) enforces the Rehabilitation Act and the ADA in all Medicaid and Medicare programs. Filing an administrative complaint is an easy process. The good news is that it doesnR17;t cost you anything and, better yet, you donR17;t need an attorney. The OCR conducts investigations, provides technical assistance, issues policy guidance, uses voluntary dispute resolution, and its enforcement powers to pursue discriminatory actions. Complaints must be filed within 180 days from the date of the alleged discrimination. This period may be extended for good cause. You can either request a Discrimination Complaint Form from OCR or write a letter that includes all of the following information: Your name, address and telephone number. If you are filing on someoneR17;s behalf, include your name, address, telephone number, and a statement of your relationship to that person; Name and address of the institution or agency you believe discriminated against you; How, why and when you believe you were discriminated against; Any other relevant information; and Your signature. The complaint should be sent to your OCR regional office or to the Washington, D.C. headquarters: U.S. Department of Health and Human Services Office for Civil Rights Washington, D.C 20201 Once your complaint is received, it is reviewed and if it raises an issue under the Rehabilitation Act or the ADA it will be investigated. If discrimination is found, OCR will first try negotiating a voluntary resolution to correct the discrimination. If negotiations are unsuccessful, enforcement proceedings may be instituted to suspend Federal funding. At this point, you may also wish to consult with an attorney about bringing a private lawsuit. Once a complaint is filed with OCR, the institution or agency named in the complaint is prohibited from taking any kind of retaliatory action against you or any person who provides information to OCR regarding the complaint. If OCR finds that the complaint is not within their jurisdiction, they may forward it to an appropriate agency that may be able to help you. OCR has a hotline for technical assistance at: 1-800-368-1019 (Voice); 1-800-537-7697 (TTY)4 or visit the Web site at http://www.hhs.gov/progorg/ocr/504/file.html XVI. Technical Assistance Resources on the ADA--Regional Disability and Business Technical Assistance Centers The Disability and Business Technical Assistance Centers (DBTACs) on the Americans with Disabilities Act (ADA) are leading national resources for information on the ADA in the United States. There are centers in each of the ten federal regions that cover the United States. They are authorized by the National Institute on Disability and Rehabilitation Research (NIDRR) to provide training, materials, and technical assistance to individuals and entities that are protected or have obligations under the Americans with Disabilities Act. ADA requirements and answers to technical questions on the application of the ADA to health care and other ADA issues are explained to anyone calling the national toll-free hotline at 1-800-949-4232. All calls are confidential and automatically routed to the DBTAC that serves the state where the call originates. XVII. RTC on Managed Health Care and Disability at ILRU Research and Training Projects Research Projects * Evaluating the Impact of Managed Care on Individuals with Disabilities: Secondary Data Analysis * Evaluating the Impact of Managed Care on Individuals with Disabilities: A Consumer-based Longitudinal Survey * Evaluating State-sponsored Health Care Reform Initiatives in Managed Care for People with Disabilities * Evaluating Alternative Managed Care Delivery Approaches for People with Disabilities * Enhancing Consumer Choice Through the Development of Quality Indicators for People with Disabilities Training Projects * Informed Consumer Choice * Managed Care and Disability Information Service * Fellowship in Health Policy Research and Disability * National Conferences on Managed Care and People with Disabilities For further information, please contact Wendy Wilkinson at ILRU (Independent Living Research Utilization), 2323 S. Shepherd, Suite 1000, Houston, TX 77019, 713-520-0232 (Voice), 713-520-5785 (Fax), 713-520-5136 (TTY), or email wendy@ilru.org. 1 Other cases that reached the same conclusion regarding the R20;fluidityR21; of the definition of public accommodation include: Wai v. Allstate Ins. Co., 75 F.Supp. 2d1 (DDC 1999); Attar v. Unum Life Insurance Co. of America, 1998 WL 574885 (N.D. Tex. 1998); Chabner v. United of Omaha Life Ins. Co., 994 F.Supp. 1185 (N.D. Cal. 1998) (Title III applies to insurance underwriting practices). See also: Cloutier v. Prudential Ins. Co., 964 F.Supp. 299, 302 (N.D. Cal. 1997); Kotev v. First Colony Life Ins. Co., 927 F.Supp. 1316 (C.D. Cal. 1996); Lewis v. Aetna Life Ins. Co., 982 F.Supp. 1158 (E.D. Va. 1997) (Title III prohibits insurer from discriminating on the basis of disability, regardless of how policy is acquired); Doukas v. Metropolitan Life Ins. Co., 950 F.Supp. 422 (D.N.H. 1996) (Title III extends to the substance of an insurance policy including underwriting practices). 2 42 USC Sec. 12182 (b) (1) (e). 3 R20;Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. Working at the national, state and community level . . ..R21; See R20;Resource DirectoryR21; for contact and additional information. 4 Information excerpted from R20;Know Your Rights - Fact SheetR21; about OCRR17;s responsibilities under the ADA and Section 504. XVIII. Resource Directory Getting Started Families USA Foundation has a number of guides that provide a basic overview of a topic and then offer extensive information, case studies, and best practices for advocates. Two may be of particular interest to people with disabilities and disability advocates: A Guide to Meeting the Needs of People with Chronic and Disabling Conditions in Medicaid Managed Care (January 1998). A Guide to Access to Providers in Medicaid Managed Care (April 1998). These guides are free. For more information, you can contact Families USA by email at info@familiesusa.org, by telephone 202-628-3030, or visit their Web site at http://www.familiesusa.org/. Reviewing Managed Care Contracts The National Health Law Program has created R20;An Advocacy Checklist for People with DisabilitiesR21; to assist in review of state Medicaid managed care contracts. This document and other valuable tools are available on the NHeLP Web site at http://www.nhelp.org/. Evaluating MCO and State Plans In October 1998, the Health Care Financing Administration published a document entitled R20;Key Approaches to the Use of Managed Care Systems for Persons with Special Health Care Needs.R21; This guidance document is intended to aid states in planning, but it can also be used to hold states and health plans accountable. (After all, if something is R20;key,R21; it should be addressed at the state and plan levels.) This document is available on the Web site at http://www.hcfa.gov/medicaid/smd-snpf.htm. The revised 1915(b) waiver renewal application form requires states to report on their efforts to comply with ADA requirements, among other things. See R20;Section F: Special PopulationsR21; and R20;Addendum to Section F: Draft Interim Review Criteria for Children with Special Needs.R21; In states that are implementing mandatory managed care for Medicaid beneficiaries with special needs, advocates should review this information and monitor program and plan performance. Managed Mental Health Care The National Alliance for the Mentally Ill has created a report card that can be used to evaluate mental health services. To see how it works, request a copy of Stand and Deliver: Action Call to a Failing Industry by calling 1-800/950-NAMI, or read a summary on the Web site at http://www.nami.org/update/reportcard.htm. The Substance Abuse and Mental Health Services Administration has a Managed Care Technical Assistance Series that includes titles such as Partners in Planning: ConsumersR17; Role in Contracting for Public-Sector Managed Mental Health and Addiction Services. Like the other materials referenced in this resource list, this helpful guidebook should be available free-of-charge. You can get more information from the SAMHSA managed care initiative Web site at http://www.samhsa.gov/mc. Implementing Olmstead Tapes of the teleconference on Implementing Olmstead may be obtained from NCIL (National Council on Independent Living), 1916 Wilson Blvd., Suite 209, Arlington, VA 22202 (Attn. Kristy Langbehn), at 703-525-3406 (Voice), 703-525-3409 (Fax), 703-525-4153 (TTY), Web site at http://www.ncil.org/, or email at ncil@ncil.org. Speakers and organizations submitting comments included: Bob Kafka, ADAPT, 1339 Lamar Square Drive #101, Austin, TX 78704, Web site at http://www.adapt.org/; Mike Oxford, Topeka Independent Living Resource Center, 501 SW Jackson, Suite 100, Topeka, KS 66603, Web site at http://www.tilrc.org/; Steve Gold, (215) 627-7300; ATTAC (Advocacy Training/Technical Assistance Center) for Protection and Advocacy Systems and Client Assistance Programs, 303-733-9324 (Voice), Web site at http://www.protectionandadvocacy.com/attac12.htm; and the National Association of Protection & Advocacy Systems, Inc., 900 Second Street, NE, Suite 211, Washington, DC 20002-3557 at 202-408-9514 (Voice), 202-408-9520 (Fax), 202-408-9521 (TTY), Web site at http://www.protectionandadvocacy.com/, or email eugenia@napas.org. The RTC on Managed Health Care and DisabilityR17;s primary purpose 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 service research; and disseminates findings to the diverse consumer, provider, payer, academic, and policy making audiences. The Center seeks to serve as a catalyst in the nationR17;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. You can get more information at the Web site, http://www.ilru.org/mgdcare. (Grant #H133B70003) The Health Law and Policy Institute at the University of Houston was established in 1978. In March 1999, it was ranked as the number one health law program in the country. You can get more information at the Web site, http://www.law.uh.edu/healthlaw. Since 1977, ILRU (Independent Living Research Utilization has served as a national center for information, training, technical assistance, and research on independent living. ILRU is affiliated with TIRR Systems, a corporation providing a continuum of services to people with disabilities. You can get more information at the Web site, http://www.ilru.org/. The Southwest DBTAC (Disability and Business Technical Assistance Center) for Federal Region VI is one of ten regional centers in the United States. The Southwest DBTAC is based at ILRU, a program of TIRR located in Houston, Texas. It is funded by the National Institute on Disability and Rehabilitation Research (NIDRR), an agency of the Department of Education. You can get more information at the Web site, http://www.ilru.org/dbtac or if you are located in Arkansas, Louisiana, New Mexico, Oklahoma, or Texas you can contact us at 1-800-949-4232. All other states can contact us at 713-520-0232.(Grant #H133D60012) Staff Mary Anderlik Wendy Wilkinson Investigators Sharon Finney Editor c1999 ILRU Program. All rights reserved Last Updated: 04/17/00