The Primer was first published in 2000--one year after the Supreme Court decision in Olmstead v. L.C. affirmed the right of persons with disabilities to live in the most integrated setting (see Box).1 A major purpose of the original Primer was to provide information about how the Medicaid program could be used to assist states in meeting the principles set out in the Olmstead decision.
In the 10 years since the Primer was published, Medicaid policy regarding the provision of home and community services has evolved considerably. During this period, the Centers for Medicare & Medicaid Services (CMS) awarded hundreds of grants to support states efforts to improve access to--and the availability and quality of--home and community services. The grants were also aimed at increasing Medicaid participants control over their services and supports.2
The Olmstead Decision3
The Supreme Court ruled that Unjustified isolation . . . is properly regarded as discrimination based on disability. It observed that (a) institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life, and (b) confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.
Under the Courts decision, states are required to provide community-based services for persons with disabilities who would otherwise be entitled to institutional services when (a) the states treatment professionals reasonably determine that such placement is appropriate; (b) the affected persons do not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others who are receiving state-supported disability services. The Court cautioned, however, that nothing in the Americans with Disabilities Act (ADA) condones termination of institutional settings for persons unable to handle or benefit from community settings. Moreover, the states responsibility, once it provides community-based treatment to qualified persons with disabilities, is not unlimited.
Under the ADA , states are obliged to make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity. The Supreme Court indicated that the test as to whether a modification entails fundamental alteration of a program takes into account three factors: the cost of providing services to the individual in the most integrated setting appropriate, the resources available to the state, and how the provision of services affects the ability of the state to meet the needs of others with disabilities.
The first edition of the Primer emphasized that people of all ages with disabilities want the same opportunities that every American wants: to thrive, not just survive. They want to live in their own homes and make decisions about daily activities; they want to go to school, attend church services, work, and participate fully in recreational and other community activities. People with disabilities have not always been allowed this birthright; society has too often focused on their disabilities rather than their abilities.
Over the past 2 decades, and particularly since the Olmstead decision, progress has been made. People with disabilities are now recognized as being able to live in their own homes and other community settings, and to lead satisfying and productive lives when provided with appropriate services and supports. Much remains to be done to enable all persons with disabilities to do so.