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THE STATES' RESPONSE TO THE OLMSTEAD DECISION:
A STATUS REPORT
(http://www.ncsl.org/programs/health/forum/olmsreport.htm)

By

Wendy Fox-Grage
Donna Folkemer
Kevin Horahan

March 2001

Purpose of the Study

Major Findings

Conclusion

Acknowledgements

Appendix A

Appendix B

In June 1999, the Supreme Court ruled in L.C. & E.W. vs. Olmstead that it is a violation of the Americans with Disabilities Act for states to discriminate against people with disabilities by providing services in institutions when the individual could be served more appropriately in a community-based setting. States are required to provide community-based services for people with disabilities if treatment professionals determine that it is appropriate, the affected individuals do not object to such placement and the state has the available resources to provide community-based services. The Court suggests that a state could establish compliance with the Americans with Disabilities Act if it has 1) a comprehensive, effective working plan for placing qualified people in less restrictive settings, and 2) a waiting list for community-based services that ensures people can come off the list at a reasonable pace and receive services.

Purpose of the Study

In light of this ruling, the National Conference of State Legislatures (NCSL) conducted a 50-state survey to determine initial state responses to the Olmstead decision. The purpose of this study is to enhance informed decision making by helping state policymakers understand the choices states are making and the options that are available to meet the needs of people with disabilities.

The study is appropriately called a status report because states are in the early stages of implementing the Olmstead decision. The long-term effects of the decision are still unknown. NCSL will continue to track activity involving the implementation of the Olmstead decision and update this report regularly, pending permanent funding which NCSL is currently seeking.

NCSL surveyed each state's main contact(s) for Olmstead activities. A list of these contacts is contained in appendix A. During the telephone interviews, survey respondents provided information on the following topics: what activities are under way or planned in the next 12 months related to the Olmstead court case; the status of the state's plan, including who is involved, its charge and its timelines, level of involvement of people with disabilities and their representatives, and who the plans include; and the barriers to implementing the Olmstead decision.

The findings from these questions can be found for each state in appendix B. These state summaries are only thumbnail sketches of activities in each state. In addition, NCSL has collected executive orders, legislation and draft plans from the states.

Major Findings

A major strategy in response to the Olmstead decision has been the creation of task forces or commissions to assess current long-term care systems and to develop plans.

Thirty-six states-Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Maine, Maryland, Massachusetts, Mississippi, Missouri, Montana, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Pennsylvania, South Carolina, Texas, Utah, Washington, Wisconsin and Wyoming-plus the District of Columbia have task forces or work groups to develop comprehensive plans or significant papers, many of which could serve as blueprints for public policy in the states. The North Dakota executive director of the Human Services Department organized an internal work group that held public hearings through an interactive video network and issued a white paper which requested the governor to appoint a commission to develop a comprehensive state plan.

All of these groups are state-funded. In addition, seven of them-Alabama, Georgia, Kentucky, Maine, Maryland, Missouri and Utah-have received matching planning grants from the Center for Health Care Strategies under The Robert Wood Johnson Foundation's Medicaid Managed Care Program.

Only a few states have finalized their plans, but most will complete them in 2001.

States are in various stages of the planning process. A few have issued their final, comprehensive plans. Some are working on them; others have issued progress reports and/or papers with recommendations that are not intended to be comprehensive.

Governors, legislators, state health and Medicaid officials, people with disabilities and their representatives and the federal government have played strong roles in the planning process in most states.

The Role of Governors. The governors in 17 states have created the commissions; several of them also have appointed many of the commission members. Governors in 10 states-Arkansas, Delaware, Indiana, Kentucky, Maryland, Missouri, Ohio, South Carolina, Texas and Washington-issued executive orders to create their work groups. Governors in the remaining seven states also played proactive roles in creating the commissions but did not do so through executive orders. As a result, these commissions will issue their reports to the governors and, in many cases, to the legislatures as well.

The Role of State Legislatures. Planning also has been closely tied to the legislative process. Legislatures in California, Hawaii, Illinois and Kentucky enacted legislation to form their commissions. The Alaska Legislature enacted a law in 2000 requiring the state Department of Health and Social Services to submit an annual report concerning the waiting list for people with developmental disabilities. The governor in Kentucky issued an executive order to create an Olmstead Coordinating Council, but the legislature established two commissions to work on state plans for mental retardation/developmental disabilities and mental health. Likewise, although Iowa's governor had directed the Department of Human Services to be the lead agency for Olmstead planning in May 2000, the General Assembly's Legislative Council authorized the creation of the Mental Health and Developmental Disabilities Services Task Force in June 2000 to recommend ways to improve service delivery for these populations.

Legislators and legislative staff sit on the commissions in Missouri, Utah and Wisconsin. However, legislatures will likely play their most significant roles during the next legislative session when most of the commissions have developed their plans and agencies will be submitting budget requests to implement the plans.

The Role of State Executive Branch Agencies. In the vast majority of states, the lead agency for the commissions is either the health and human services department or the Medicaid agency. In fact, commissioners of these departments formed many of the work groups. For the most part, agencies such as Medicaid, health and human services, mental health, aging, housing, education and rehabilitation services are directly involved in creating their state plans.

The Role of People with Disabilities. Most states are involving people with disabilities throughout the planning process. In fact, several of the executive orders and some legislation directly resulted from the efforts of people with disabilities, and these orders often include provisions requiring that Olmstead task forces and work groups include people with disabilities as members. Even in those states where the plans are being created as an interdepartmental effort, state officials are trying to involve people with disabilities by holding forums across the state and sharing draft copies of the plan for feedback. In some states, the commissions are building upon the prior work of advocates. In New Jersey, for example, an independent coalition of consumers, advocates and family members-called the New Jersey ADA Coalition-had been meeting since September 1999. This coalition prompted the governor to engage in interdepartmental planning and to develop a plan. Before Missouri's Home and Community-Based Services and Consumer Directed Care Commission was formed, there was a stakeholders group of consumers, providers and state officials. The commission's work contains many stakeholder recommendations.

The Role of the Federal Government. The federal government has taken many actions to implement the Olmstead decision-several of which are important to state legislatures. These actions include issuing guidance letters, revising its policies, holding meetings with the states and giving more than $70 million in planning or demonstration grants to the states to expand community-based options.

The Office of Civil Rights (OCR) has been given the authority to oversee Olmstead enforcement. As part of this effort, OCR has formed an Olmstead Workgroup, comprised of its representatives as well as HCFA officials, which meets on a monthly basis to respond to questions received from states and to discuss the need for written guidance. Both OCR and HCFA officials have participated in meetings with state officials to discuss the importance of the decision and to review current policy directions. Additionally, between January 2000 and the present, HCFA and OCR have jointly released five "Olmstead" letters to state Medicaid directors and other state agencies providing guidance for developing comprehensive, effectively working plans for implementing the Olmstead decision. The letters also include HCFA clarifications and modifications to federal Medicaid policy to facilitate state efforts to enable people with disabilities to be served in the most integrated settings appropriate to their needs.

In January 2001, HCFA announced new awards exceeding $70 million that will be distributed to states in September 2001. They include 1) $50 million in "Real Choice Systems Change Grants," designed to help states improve health and long-term care systems for seniors and people with disabilities; 2) $15 million in grants, along with Section 8 housing vouchers, to help all people with disabilities move from institutions to community-based settings; and 3) $8 million to enhance community-based personal assistance services to ensure maximum control by people with disabilities of all ages. More information about these grants is available at http://www.hcfa.gov/medicaid/smd110a1.pdf.

The scope of the work of most commissions is broad and includes all people with disabilities.

Although the Olmstead case involved two women with both mental illness and developmental disabilities, the federal government has made it clear that the Supreme Court decision involves all disabled people, regardless of age. Thus, most states are assessing their systems of care for people with developmental disabilities, people with physical disabilities, people with mental illness as well as older people with disabilities. In addition, plans include many subgroups, including 1) institutional residents whose needs can be appropriately met in the community, 2) residents in community-based settings who require institutional care, and/or 3) people who reside in the community and are at risk for institutionalization because of the absence of care.

The planning process has been rather slow, given the many barriers, pending lawsuits and arising complexities.

The slow pace of the planning and implementation efforts has frustrated many advocates, given that it already has been almost two years since the Olmstead ruling. However, state officials point to the challenges of reaching consensus among the different stakeholders. This work is essential if the plans are to be implemented, but such a process generally is lengthy. In addition, the task forces are working on complex issues that go beyond Medicaid and health care; the issues extend to transportation, education, housing and other supports. The biggest issues of complexity identified are how to:

In addition, several lawsuits are pending. The effect of these cases is mixed. Lawsuits filed or pending in many states are influencing state efforts, either by making this issue a higher priority for attention or by raising the degree of caution among state officials who are fearful of releasing information. In the long run, however, lawsuits in individual states may clarify the scope and breadth of the Olmstead decision.

Although several states do not have a commission or any other Olmstead-specific activities planned or under way, they are responding to the ruling in other ways.

Fourteen states are not engaged in or do not plan to engage in any specific Olmstead activities. Some already had the planning processes for home and community-based care in place before the Olmstead decision. Some are in the midst of lawsuits, and some have chosen to move toward more community-based care through the budgetary process.

As a result of a 1999 lawsuit settlement, for example, Oregon already had a six-year plan to eliminate the waiting list of more than 5,000 people for its waiver program that serves people with developmental disabilities. The state will create 50 new non-crisis placements per year for six years and will increase personal and respite care. Of its available total Medicaid long-term care funds, Oregon spent more of its budget on home care (56 percent) than on institutional care (44 percent). As of FY 1999, it was the only state to do so.

Vermont, which often is cited as a model state, is not working on an Olmstead- specific plan because it has implemented a range of activities over the years that are related to downsizing institutions and moving toward home and community-based care. State officials and advocates seem to concur that the state is in full compliance with the Olmstead decision. No institutions exist for individuals with developmental disabilities, and all nursing facility residents have been assessed for community-based service options. As one advocate stated," Olmstead is not being used because it is not needed. The commitment is already there."

Nebraska's governor has requested significant increases in spending for home and community-based services for people with mental illness and people with developmental disabilities. Nebraska's approach to the Olmstead decision is somewhat different than that of other states. It is their position that the decision requires not an overall plan but a plan for each individual. State officials believe the current system meets this requirement. Therefore, the state is focusing on improving the processes and applications of the existing policies. To that end, agencies within the Department of Health and Human Services have made budget requests focusing on client-specific plans within the framework in place, but they have not necessarily identified the requests as directly related to Olmstead.

Conclusion

At this point in time, it is too early to determine the full effects of the Olmstead decision. Every state is moving toward more home and community-based services, although some are moving faster than others. However, this study shows that most states are responding to the Olmstead decision by developing a plan, appropriating more money toward home and community-based services or, in many cases, are doing both.

The Court decision has caused providers, consumers and state officials to come together with the shared commitment to provide more community-based services and reduce the waiting lists for such services. It also has caused the federal government to revise its policies in this area and to offer states flexibility and funding for them to develop innovative solutions. At the same time, several lawsuits have been filed or are pending in the states as a result of a lack of home and community-based alternatives. Olmstead implementation will take many years, and it involves not only health care but transportation, housing, education, and other social supports to fully integrate people with disabilities into the least restrictive settings.

This study is a work in progress. Please contact Wendy Fox-Grage at (202) 624-3572 or wendy.fox-grage@ncsl.org if the authors have incorrectly reported or inadvertently omitted certain Olmstead activities.

Acknowledgements

The Forum for State Health Policy Leadership at NCSL is grateful to The Robert Wood Johnson Foundation for its generous support. The authors also would like to thank our state contacts; Elizabeth Priaulx at the National Association of Protection and Advocacy Systems; Nikki Highsmith at the Center for Health Care Strategies; and Martha King, Jo Donlin, Carrie Farmer, Julie Scales, Elizabeth Devore, Leann Stelzer and Joy Johnson Wilson at NCSL.