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  1. TITLE: The States’ Response To The Olmstead Decision: A Work In Progress
  2. Authors: Wendy Fox-Grage, Donna Folkemer, Tara Straw and Allison Hansen (KACW 5/27/03)
  3. Purpose of the Study: The National Conference of State Legislatures (NCSL) conducted a 50-state survey on the effects of Olmstead. Results from that first survey provided an overview of the choices states are making as they fulfill their obligations under the Olmstead decision. Building on its previous work, NCSL issued this second study to continue its review of state planning and implementation activities related to Olmstead. The purpose of this study is to:
    • Categorize overall state activities around Olmstead, according to their scope and purpose;
    • Provide detailed descriptive analyses of Olmstead plans, including analyses of priorities, action steps, timetables, budgetary and legislative strategies, and other relevant factors;
    • Identify and describe targeted efforts planned on behalf of people with disabilities.

    NCSL initially surveyed each state’s main contacts for Olmstead activities during the summer of 2001; analysts then again called contacts in the fall for an update in those states that issued their plans or created their commissions between August and December 2001. Therefore, this report is current as of December 2001. During the telephone interviews, survey respondents provided information on the following topics: Olmstead activities, consumer involvement, lawsuits, implementation deadlines, major recommendations and priorities, strategies for implementing the recommendations, costs and funding issues.

    According to the 1999 Olmstead ruling, states are required to provide community-based services for people with disabilities if treatment professionals determine 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 comply with the decision if it has a comprehensive, effective working plan for placing qualified people in less restrictive settings, and a waiting list for community-based services that ensures people can receive services and be moved off the list at a reasonable pace.

  4. Major Findings:
    1. Forty states plus the District of Columbia have task forces, commissions or state agency work groups to assess current long-term care systems and many are developing plans. Governors, legislators and health commissioners in many of the 40 states created specific Olmstead task forces, while existing long-term care commissions in some states now are charged with Olmstead-related activities. Most task forces are working on comprehensive plans or significant papers, many of which could serve as blueprints for public policy in the states.
    2. Eighteen states have issued Olmstead plans or significant papers, and several more are working on them. Most of the plans would not be considered comprehensive because they either do not meet the Centers for Medicare and Medicaid Services (CMS) guidelines or do not contain timelines or budgets. Ohio, along Missouri, Mississippi and Texas, have plans that stand out because they contain a clear vision for systems change, specific strategies and goals, agencies responsible for each strategy, timelines and budgets. Ohio ACCESS issued a 79-page report that contains short-term and long-term recommendations, including a comprehensive review of Ohio’s services and supports for people with disabilities and recommendations for improving services during the next six years. It contains the proposed executive budget for FY 2002-2003 of $145 million for new initiatives and expansion of programs for people with disabilities. The short-term recommendations included in the 2002-2003 biennial budget center on expanding waiver programs; the long-term recommendations focus on labor issues. Self-determination and a person-centered planning approach with assistance from family, friends and caregivers are the cornerstones of the Ohio Access program.
    3. Several states have task forces working on Olmstead-related activities but are not intending to issue comprehensive plans. Under the ruling, states are not required to issue comprehensive plans. As a result, states and territories such as Florida, New Hampshire, Pennsylvania, Washington and the District of Columbia have meaningful projects under way, but they do not intend to write comprehensive plans.
    4. Most commissions are broad-based and have cross-disability policies so that their scope of work includes all people with disabilities and several of them publish their activities on the Internet. Although the Supreme Court case involved two women with both mental illness and developmental disabilities, the federal government has made it clear that the 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 and 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. Most of the commissions have members who are consumers or disability advocates.
    5. To shift more resources into community-based settings, state commissions have issued recommendations that address eight major issues: housing, transportation, assessment, waiver program expansion, helping individuals make the transition from institutions into the community, staffing, data collection and consumer/provider/state agency education and outreach, that provide the framework for their plans.
    6. Implementation is not yet under way for most of the plans. Ohio is only one of four states that have issued plans in time for the 2001 legislative session. Of the four, three have implemented some of their recommendations. Even in these three states, most of the strategies have not yet been implemented. This slow pace has frustrated many disability advocates, state officials and other stakeholders. In Missouri, the legislature had enacted laws to increase salaries for aides caring for people with mental retardation and developmental disabilities; ensure training for staff and individuals who are interested in transferring from a nursing home to the community; make personal care services an entitlement and serve an additional 2,000 people, most of whom are younger people, transferring to the community; and establish a fund to allow individuals who are moving from an institution to apply for a one-time grant of up to $1,500.
    7. State budget shortfalls and declining state revenues will likely delay Olmstead implementation, but several federal opportunities could enhance systems change.
    8. Although some recommendations do not require significant revenues, new state appropriations will be needed to implement many of the plan recommendations, especially those related to increasing the number of waiver slots or residential settings available for people with disabilities. States have reported that they also will be under pressure to contain costs due to dismal state fiscal conditions. Almost all states are experiencing revenue shortfalls, according to recent fiscal data from NCSL. At least 36 states have implemented or are considering budget cuts or holdbacks to address fiscal problems. Other states are likely to use rainy day funds to fill budget gaps in existing programs, and new initiatives may fare less well than they would in a more positive fiscal environment. Despite the gloomy fiscal picture, the federal government has taken several actions to support implementation of the Olmstead decision. These actions include issuing guidance letters, revising its policies to allow states more flexibility, holding meetings with the states, and giving $64 million in planning or demonstration grants to the states to expand community-based options. Most recently, CMS awarded approximately $64 million in new grants on September 2001 to 37 states and one territory to develop programs for people with disabilities and long-term illnesses. These awards included: 1) Nursing Facility Transition grants to help states move eligible individuals from nursing facilities into the community; 2) Community-Integrated Personal Assistance Services grants to improve personal assistance services that are consumer-directed; 3) Real Choice Systems Change grants to help design and implement effective and enduring improvements in community long-term support systems to enable children and adults of any age who have a disability or long-term illness to live and participate in their communities; and 4) National Technical Assistance Exchange for Community Living grants to provide technical assistance, training and information to states, consumers, families, and other agencies and organizations.

  5. Ohio Developments: Created by executive order in June 2000, Ohio ACCESS issued its comprehensive report to the governor on February 28, 2001. The report, Ohio Access for People with Disabilities, contains short-term and long-term recommendations. As part of Ohio ACCESS, the governor directed the director of the Office of Budget and Management, along with the Ohio departments of aging, alcohol and drug addiction services, health, job and family services, mental health, and mental retardation and developmental disabilities, to conduct a comprehensive review of Ohio’s services and supports for people with disabilities and to make recommendations for improving services during the next six years. The governor also mandated that people with disabilities and their representatives participate in the review and development of the recommendations. Ohio ACCESS is working to increase community capacity, ensure quality and access, and provide for cost-effectiveness. Ohio ACCESS, led by the Medicaid program, consists of the directors of all the relevant agencies. The short-term recommendations for consideration in the 2002-2003 biennial budget focus on customer services and long-term recommendations on labor issues. The commission is giving priority to the needs of people with developmental disabilities and people with physical disabilities. Within these disability groups, the commission is focusing on strategies for moving people out of institutions. The FY 2002-2003 appropriations included:
    • Adding 1,300 slots in FY 2002 and another 1,600 slots in FY 2003 to the PASSPORT waiver program, providing care to people over age 60 who otherwise would need nursing home services (the program currently has more than 24,000 slots);
    • Adding 500 slots in both FY 2002 and FY 2003 to the Home Care Waiver Program, providing care to disabled people under age 60 or people of any age with a chronic, unstable condition who require nursing care (the program currently has 8,200 slots);
    • Adding 500 slots in both FY 2002 and FY 2003 to the Individual Options Waiver Program, serving people who otherwise would require an ICF/MR;
    • Establishing an Ohio Success pilot program to fund up to $2,000 in transition costs for 75 people in FY 2002 and 125 individuals in FY 2003 to be used as seed money for the first month’s rent, utility deposits, moving expenses and other related costs;
    • Developing cost management tools that promote choice and personal responsibility;
    • Redesigning the mental retardation and developmental disabilities Medicaid delivery system by moving the Community Alternative Funding System program to a fee schedule and by making the transition to new home and community-based waivers; and
    • Improving cost management tools within the community mental health system.

    Overall, the cornerstones of the Ohio Access vision are consumer self-determination and a person- centered planning approach with assistance from family, friends and caregivers. The recommendations for overcoming barriers to achieving the vision include: matching capacity with the demand for community-based services; generating and sustaining the necessary resources to expand community services; overcoming federal policy constraints such as the federal Medicaid waiver; addressing the health care workforce shortage by creating a public-private workgroup; conducting a labor market analysis; studying wage and rate issues; creating demonstration projects to examine career ladders, scholarship opportunities, and payments to family members and other informal caregivers on a controlled basis; examining alternatives to the traditional provision of long-term care by looking at scope of practice issues, assistive technology and the increased use of independent service providers; overcoming policy constraints on self-sufficiency and personal and family responsibility by providing better information and assistance for consumers and their caregivers. In addition to the recommendations, the report contains: an overview of state-supported, community-based long-term care services in Ohio; the currently offered community services for people with disabilities; federal constrains that have contributed to the current institutional bias present in publicly funded programs; and challenges to state policy that exist and must be addressed for the vision of the report to be implemented. The state expected its new waivers to be ready by July 1, 2002. A class action suit, Martin vs. Taft, is pending in federal court on behalf of 6,000 adults with developmental disabilities on Medicaid waiver waiting lists.

  6. Other Interesting Developments and Plans:
  7. Arizona: The focus of the final plan, released in early September 2001, is on moving individuals from institutions into community settings and on preventing the loss of services for those already in the community. Ensuring an adequate labor force is one of the biggest issues. According to the plan, solutions to labor force problems will require legislative support, fiscal support, changes in credentialing and scope of practice limitations and an adequate labor market. To address labor force issues, Arizona is considering the following options: using Medicaid ALTCS funds to pay spouses and parents as personal care attendants; providing interim pay to personal care attendants when the consumer is out of the home (e.g. hospitalization); pay increases for home and community-based providers and consumer-directed services.

    Florida: Florida has developed a unified Olmstead Coalition that includes state agencies, consumers and other key stakeholders. Among the programmatic activities slated for implementation during fiscal year 2001 were the following: doubling the number of waiver slots, up to 26,000 for people with development disabilities; implementing a nursing home transition grant for people with traumatic brain injuries in nursing homes; continuing the operation of 10 home and community-based waivers; submitting a Medicaid state plan amendment authorizing assisted living; and making available statewide a demonstration program on assertive community treatment for people with behavioral health needs.

    Hawaii: Hawaii has an Olmstead committee and has held four meetings and set up four task forces based on different planning areas: 1) assessment (who is eligible for what services); 2) information (this is the committee’s top priority: awareness of what is available, working on single point of entry system); 3) finance; and 4) infrastructure. The infrastructure task force covers three areas; housing, transportation and personnel. The committee’s approach is to include a broad range of disability groups in the planning efforts. Using this approach, the committee is trying to work on crossover issues such as housing, transportation and information that apply to all groups, rather than catering to specific interests. Committee members have heard a case manager discuss opportunities and barriers in the community. The governor has approved $2 million for expansion of home and community-based services, but no requests have been made by state agencies specific to Olmstead. The case, Makin vs. Cayetano, was filed because the defendants believed the developmental disabilities waiting list was not moving quickly enough. The state agreed to fund 700 additional community placements over three years.

    Indiana: The governor has identified the Family and Social Services Administration (FSSA) as the lead agency to implement Olmstead. FSSA has not made Olmstead budget requests specifically, but it requested funds to deal with the general issues addressed by the Olmstead decision. The legislature approved several requests made in the governor’s budget to deal with these issues. For example, 822 additional slots were approved for the aged and disabled waiver for FY 2002 and an additional 813 for FY2003. An additional $6 million was appropriated for in-home services programs for each year of the biennial budget, with money for raises for direct care staff.

    Maryland: The Community Access Steering Committee under the Maryland Department of Health and Mental Hygiene, created by an executive order, released its recommendations to the governor on July 13, 2001. Recommendations included: improve compensation for community-based direct care workers by increasing and restructuring reimbursement rates in the Medicaid Personal Care Program; enhance efforts to coordinate and develop affordable, accessible housing for people with disabilities; initiate efforts to more effectively work with local public housing authorities to ensure they are aware of the needs of individuals with disabilities and are able to address them in ways such as setting aside a portion of their vouchers for people who want to leave an institution; enhance the availability of accessible transportation for people with disabilities by exploring opportunities to develop pooled funding on a regional basis; fund and support department plans to help individuals make the move from state-operated facilities to the community and fund and support efforts to help individuals make the transition from private facilities that serve individuals receiving government assistance by conducting outreach and education in nursing homes and chronic hospitals and expand crisis response and respite care programs for people who live in the community. The 2001 Maryland General Assembly passed legislation to increase the number of people to be served through the existing Community Attendant Services and Support Program Waiver and required the Department of Health and Mental Hygiene to submit an amendment to the waiver to expand eligibility to 300 additional adults with physical disabilities by expanding an existing Medicaid waiver program. Budgeted at $10 million in FY2002, the program permits individuals to select, manage and control their services and to choose their personal assistants, including the hiring of family members. The highest priority long-term care population probably will continue to be people with physical disabilities. Budget requests to move people with physical disabilities and those at risk from institutions to the community likely will be submitted in March 2002 when the budget process begins.

    Massachusetts: There have been two suits filed. One case, Rolland vs. Cellucci, was filed under the ADA on behalf of 1,600 nursing facility residents with mental retardation. The state entered into a settlement agreement in the Rolland case, which resulted in 75 people receiving community residential and their supports in FY 2000 and 175 people receiving community residential and other supports in FY 2001. In addition, up to 175 people in 2002, and 150 per year through 2007 are expected to receive such supports. Another case, Boulet vs. Cellucci, was settled whereby the state agreed to target a total of $85 million of new funding for the development of group homes and delivery of interim at-home services during fiscal years 2002 to 2006 for class members. In addition, the state agreed to commit $29 million of its existing Department of Mental Retardation appropriation for community residential placements for class members.

    Mississippi: Created by legislation in March 2001, the task force called Mississippi Access to Care (MAC) issued its report to the Legislature on September 30, 2001. This report is unique because it contains the proposed budgets for FY 2003-2011 for each recommendation. To implement the plan, MAC has estimated that the cost to the state for new initiatives and expansion of programs for people with disabilities will be $52.7 million in FY 2003, $74.8 million in 2004, $69.1 million in FY 2005, $62.2 million in FY 2006, $48.6 million in FY 2007, $40.9 million in FY 2008, $33.1 million in FY 2009, $32.5 million in FY 2010, and $ 33 million in FY 2011.

    Nebraska: Nebraska’s interpretation of the Olmstead decision is somewhat different from other states. The state’s position is that the decision requires not an overall plan, but a plan for each individual and the current system meets this requirement. Therefore, the state is focusing on improving the processes and applications of the existing policies. Agencies within the Department of Health and Human Services (HHS) have made budget requests to deal with the issues raised in Olmstead, but have not necessarily identified the requests as directly related to Olmstead.

    Nevada: In response to a proposal in the governor’s budget, the 2001 Nevada Legislature approved funding for a long-term strategic plan to: ensure the availability and accessibility of a continuum of services that appropriately meet the basic needs of people with disabilities, support the ability of people with disabilities to lead independent and active lives within their community, continue the effort of the state of Nevada to provide community-based services that match the needs of the client and provide choices between appropriate services, and ensure that people with disabilities receive the services to which they are entitled. The approved budget also included new funding for independent living assistance for disabled people and an 88 percent expansion of Medicaid home and community-based waiver services for individuals with physical disabilities. In addition, increases in mental health and developmental services case management, community placements, family support and respite, jobs and day training, and residential support were included. The budget also expanded The Medicaid Community Home-Based Initiative Program (CHIP) by 34 percent, doubled the capacity of the Medicaid Group Care Waiver for the Elderly Program, and expanded the Homemaker Program by 16 percent.

    New Hampshire: During the 2001 session, legislation passed requiring the Department of Health and Human Services to submit a plan to reduce the waiting period for developmental services to 90 days over a five-year period. In addition, the legislature appropriated $5 million to serve developmentally disabled people on the waiting list for home and community-based services and $3 million for people with acquired brain disorders for FY 2002 and FY 2003. In 1997, the legislature required full funding of the waiting list for developmental services to be a part of the DHHS budget. Further, in 1998, the legislature established an oversight committee to review the allocation of developmental services waiting list funds. Officials also note that, by 1998, $123.5 million was spent annually for developmental services, 99 percent of which went toward community-based services. State officials, however, do recognize the existence of waiting lists for home and community-based care, but they point to the decline in average waiting time as evidence of improvement in their system. In 1997, the average time was 302 days, in 1998 it was 249, in 1999 it was 203, and in 2000 it was 160. In the 2000 session, although it is not clear if any were in direct response to Olmstead, the legislature passed several more initiatives. These include the creation of a study committee to consider proposals to reduce the developmental services waiting list to zero and the allocation of $4.5 million for direct care provider salary increases for providers for individuals with developmental or acquired brain disorders.

    Oregon: The state developed a six-year plan that has as its goal the elimination of the waiting list for community-based services for people with developmental disabilities. The plan was the basis for the state’s recent settlement of a lawsuit filed on behalf of more than 5,000 people on a waiting list for care. The state has agreed to create 50 new non-crisis placements annually for the next six years and will increase the availability of personal care and respite services. The governor proposed adding $40 million to the budget over two years for these services. There are no waiting lists for services for people with physical disabilities or the frail elderly.

    Texas: The Texas Department of Human Services is using a multi-phase approach to identify and assess individuals to whom Olmstead applies. Phase one of the plan was implemented effective December 1, 2000. Phase one activities involve informing nursing home residents about community-based alternative programs, training agency staff, promoting community awareness about choice and community options, collecting baseline data about nursing home residents who are seeking to make the transition into the community, and developing permanency planning for community placements for children in facilities. Phase two was implemented over a two-year period beginning in September 2001. The department will hire and train relocation specialists, develop an identification process and assessment instrument, track data from the relocation specialists, and conduct community awareness activities. Phase three would divert people from institutionalization by placing additional staff in hospitals and rehabilitation centers for pre-admission and admission screening.

    Utah: Since 1989, the Utah Departments of Health and Human Services have moved forward with the implementation of five 1915(c) HCBS waivers. In 1997, the Utah Health Policy Commission established the Long-Term Care Technical Advisory Group (LTC TAG) to address concerns about long-term care in the state. In 1997, the LTC TAG produced a set of recommendations after gathering information from the public and those with experience in long-term care. The Utah Department of Health’s LTC managed care demonstration project became operational in April 2000 and as of October 2001 has helped 160 Medicaid clients make the transition from acute care hospitals, Medicare skilled nursing facility beds, and Medicaid nursing facility beds to home and community service arrangements. This project continued through March 2003 with the potential to serve up to 500 enrollees at any given time.

    Vermont: Vermont is in a unique position because 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. Some of the state’s accomplishments include: closing the last developmental disability facility in 1993; having only 50 people in the state mental hospital; creating home and community-based care waiver programs for all populations; moving 100 people from nursing homes to waiver programs; and managing home and community-based services and nursing homes for senior citizens in a single budget so that the savings can remain in the system.

    Washington: Officials have been moving to expand community resources and downsize institutions for years, stating that about 85 percent of the aging, developmentally disabled and mentally ill populations are served in the community. Current appropriations include: $10.5 million to provide community placement for 80 individuals with developmental disabilities who currently reside in state and community institutions; $1.1 million savings by providing COPES as an option for clients on the medically needy program, which will create opportunities for many people currently served in nursing homes to move to other settings if desired; 1 million to serve clients with mental illness (who currently are in state psychiatric hospitals) in other settings; $3.2 million to establish a 35-bed chemical dependency involuntary treatment program in eastern Washington; $1.5 million to expand behavior rehabilitation services for youth who might be at risk of institutionalization.

    West Virginia: The Legislature, at the request of the governor and the secretary of health and human resources, provided a special appropriation of $500,000 to be used during the planning process. These funds assist community placement of individuals currently in state-operated nursing homes and psychiatric hospitals. Several lawsuits have helped to shape the activities in West Virginia. Shortly after the Olmstead decision, the U.S. District Court for the Southern District of West Virginia handed down a ruling in the case of Benjamin H. vs. Ohl. Citing Olmstead, the court found West Virginia’s practice of limiting home and community-based service waivers to those with an emergent need a violation of the due process and equal protection requirements of the Medicaid Act and the ADA. The court ordered that individuals on the waiting lists must receive services within 90 days of determination of their eligibility. In addition, they required the waiting lists to move at a "reasonable pace." As a result of this decision, state officials established a centralized process to review the waiting lists at the 14 community mental health facilities and the four community developmental disability centers. The FY 2001 budget included a "Benjamin H. improvement package" that funded 400 additional MR/DD waiver slots by adding almost $5 million.

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