Rights Round Up
Supreme Court Decisions
On June 22 the U.S. Supreme Court ruled on four important cases that profoundly affect people with disabilities. In Olmstead v. L.C. the court ruled that unjustified institutionalization of people with disabilities violates the Americans with Disabilities Act (ADA). In three other disability employment decisions, Sutton v. United Air Lines, Inc., Albertsons Inc. v. Kirkingburg, and Murphy v. United Parcel Service, Inc., the Court held that the ADA does not protect people who have conditions or disabilities that are being corrected with medication or assistive devices such as eyeglasses.
Olmstead v. L.C. Supreme Court Decision
The case was brought by two women with both mental illness and mental retardation who were confined in a Georgia state psychiatric hospital long after the state’s professionals determined that they were ready for discharge to the community. The Supreme Court held that under the ADA, unnecessary institutionalization of individuals with disabilities violates the ADA’s “integration mandate” unless the remedy would require a fundamental alteration. In other words, if a state would have to fundamentally alter or change its program services, it may not have to integrate persons with disabilities into communities.
The court determined that unjustified isolation of individuals with disabilities in institutions violates the ADA. It also said that community-based care should be provided to individuals with disabilities when both 1) the state treatment professionals have determined that care in a community setting is appropriate and 2) the individual chooses such care. To determine if a state would have to fundamentally alter its services three factors would be considered. These include: 1) the cost of providing services to the individual with a disability in the most integrated setting; 2) the resources available to the state; and 3) how the provision of services affects ability of the state to meet the needs of others with disabilities.
A state can comply with the Olmstead decision by developing and implementing a comprehensive and effective plan for transitioning eligible persons with disabilities into community-based settings at a reasonable pace. Also, states can consider the cost of serving a class of disabled individuals and the setting in which they will be served when developing their transition plans. Further, if the costs of providing treatment in a community-based setting are unreasonable, a state’s obligation to provide treatment in a community-based setting may be limited.
The Department of Health and Human Services (HHS) has established a department-wide workgroup, under the leadership of representatives of the the Centers for Medicare and Medicaid Services and the Office of Civil Rights, to develop, coordinate and conduct activities to assist states with Olmstead implementation. Substance Abuse and Mental Health Services Administration (SAMHSA), as the lead agency in HHS on matters related to mental health and substance abuse, established an internal working group and is currently addressing policy, technical assistance and training activities that address SAMHSA grant programs. Additional information on Olmstead is available at web site http://www.hhs.gov/ocr/mis.htm or the Office of Civil Rights at (800) 368-1019.
Consumer Bill of Rights and Responsibilities (CBRR)
SAMHSA with the Center for Health Services Research and Policy, George Washington University, is developing twelve 4-6 page publications describing elements of the Consumer Bill of Rights and Responsibilities from the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry. Each publication will describe the specific right, explain its importance to consumers of mental health and chemical dependency services, and define the issues that consumers face in exercising the rights. Also, each will give examples of how the right operates and how consumers know if their health plans and providers are honoring the right. On March 1 and 2 in Washington, D.C., sixteen consumers of mental health or chemical dependency services and family members reviewed and made recommendations on draft publications that discuss the first four rights of the CBRR. The development and production of the remaining eight documents will continue throughout the remainder of the year. Additional information on the CBRR is available at web site www.hcqualitycommission.gov or at (800) 358-9295.
Protections for People with Mental Illness in Research
An HHS workgroup is reviewing the December 1998 report from the National Bioethics Advisory Commission on Research Involving Persons with Mental Disorders That May Affect Decision-making Capacity. The report discusses how ethically acceptable research can be conducted with people with mental disorders. It also discusses whether additional protections are needed, and if so, what they should be and how they should be implemented. Issues such as informed consent, capacity assessment and the assessment of risk and potential benefit from research are discussed. Twenty-one recommendations address reforming federal regulations that govern research of human subjects and offer additional guidance for Institutional Review Boards, the bodies at institutions such as universities that review, approve, and monitor research involving people with mental disorders. The HHS workgroup will make recommendations to Secretary Shalala on what actions to take regarding the recommendations. SAMHSA is represented on the department workgroup by Carole Schauer. Additional information on the report can be found at web site www.bioethics.gov or at (301) 402-4242.
Privacy of Medical Records
On October 29, 1999, HHS proposed the first-ever set of national standards to protect the privacy of Americans’ personal health records. The standards will apply to medical records created by health care providers, hospitals, health plans and health care clearinghouses that are either transmitted or maintained electronically, and the paper printouts created from these records.
The bipartisan Health Insurance Portability and Accountability Act of 1996 (HIPAA) — also known as the Kassenbaum-Kennedy law — called on Congress to enact comprehensive national medical record privacy standards by Aug. 21, 1999. If Congress was unable to meet that deadline, HIPAA required the Secretary of HHS to issue final regulations by Feb. 21, 2000. The public had until February 17 to comment on proposed regulations. The next step is for HHS to consider the comment, review and revise the proposed regulations and issue a final rule. More information is available at (202) 260-5083.
Contact: Anyone interested in sharing their views on the above rights topics may contact Carole Schauer at cschauer@samhsa.gov or (301) 443-8304.
Consumer Affairs Bulletin
Volume 4, No. 2 Spring 2000
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