NCSL initially surveyed each state's main contact(s) 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. Therefore, this report is current as of December 2001. A list of the contacts is contained in appendix A. 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. The findings from this survey for each state are contained in appendix B. These state summaries represent only brief sketches of activities in each state.

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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; many are developing plans. Ten states-Michigan, Minnesota, Nebraska, New York, Oregon, Rhode Island, South Dakota, Tennessee, Vermont and Virginia-do not. 
   
   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, although not all, of the 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. 

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

   • Plans in four states-Mississippi, Missouri, Ohio and Texas-stand out because they contain a clear vision for systems change, specific strategies and goals, agencies responsible for each strategy, timelines and budgets. In addition, they meet the guidance set forth in the CMS letter of January 14, 2000, that contained the enclosure, Developing Comprehensive, Effectively Working Plans, Initial Technical Assistance Recommendations.

     Mississippi's 59-page plan issued by the task force-Mississippi Access to Care (MAC)-contains recommendations for the next 10 years. The plan is unique in that it includes proposed budgets for FY 2003-2011 for each recommendation. The cost to the state for complete implementation of the plan 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. The purpose of the plan, as cited in state legislation, is to have community services for all disabled people by June 30, 2011. The plan can be found on the MAC web site at http://www.mac.state.ms.us.

     Missouri's 15-member Home and Community-Based Services and Consumer Directed Care Commission issued a more than 200-page plan that includes an inventory of available services; budget action, federal action and statute changes; the agency responsible for implementing each recommendation; and a FY 2001 or FY 2002 timeline for each recommendation. It issued many recommendations including those related to caregiver compensation, housing, transportation, informed choice, consumer and family directed care, making the transition to independence, and Medicaid eligibility. Since the plan was issued, the new governor has formed a new commission to continue the work and implement the plan. The report is available at www.dolir.state.mo.us/gcd/Olmsteadindex.html.

     Ohio's task force-Ohio ACCESS-issued a 79-page report that contains short-term and long-term recommendations. It also includes a comprehensive review of Ohio's services and supports for people with disabilities and recommendation 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. (Budgets for the long-term solutions and the agencies responsible for them were not detailed.) The short-term recommendations for consideration in the 2002-2003 biennial budget center on expanding waiver programs; the long-term recommendations focus on labor issues. The cornerstones of the Ohio Access vision are consumer self-determination and a person-centered planning approach with assistance from family, friends and caregivers.
     Click here for the report.

     Texas' Promoting Independence Plan includes an inventory of available services; state budget requests and statute changes; and the agency-primarily the Department of Human Services or the Texas Department of Mental Health and Mental Retardation-responsible for implementation. The plan includes recommendations on expanding all waiver programs, increasing outreach to inform people with disabilities about community options, providing permanency planning to develop community placements for children, helping nursing facility residents make the transition into the community, providing temporary rent subsidies for consumers who are awaiting federal housing assistance, making available one-time grants to families who need to make a home modification to care for children with disabilities, and providing funds for non-medical transportation for people who are making the transition into the community.
     The report is available at http://www.hhsc.state.tx.us/tpip/tpip_report.html.

   • Nine states-Arizona, Delaware, Illinois, Indiana, Iowa, Kentucky, Maryland, Montana and South Carolina-have issued plans or significant reports, but they do not include budgets and/or timelines. Some-such as Arizona, Iowa and Kentucky-released status reports along with some options for systems change. These papers included an inventory of services and support available and some policy and programmatic recommendations. Other states-such as Illinois, Indiana, Maryland, Montana and South Carolina-issued a catalogue of recommendations in which they either disseminate a "wish list" of general, broad recommendations or include a menu of new, more specific potential policy and programmatic directions. 

   • Five states-Connecticut, Georgia, North Carolina, Wisconsin and Wyoming-have interim drafts that are near completion; all of their final reports are expected in early 2002. Connecticut released the third draft of its community integration plan. Choices Are for Everyone, in September 2000 for public comment. Georgia completed a draft of its executive summary. North Carolina's interim draft contains goals and strategies related to informed choice, care planning, waiting lists, the worker shortage and quality of care, but it does not include budget numbers. The Wisconsin draft focuses on budgetary recommendations in that it gives specific funding amounts and some ideas for increasing funding, i.e. waiver expansion and timelines for projects.

     However, it does not identify at-risk populations or assess available services. The Wyoming draft, released on April 1, 2001, has four sections: aging, developmental disabilities (acquired brain disorders), developmental disabilities (general), and mental health. Within each of these sections are numerous recommendations and an inventory of existing services. However, most sections do not include specific timelines for recommendations, potential funding sources or funding needs. 

   • At least eight states-Alabama, Arkansas, California, Colorado, Kansas, Maine, New Jersey and West Virginia-are working on plans and reports, most of which are expected to be released during the first quarter of 2002. The timelines for these states are as follows: Alabama (January), Arkansas (Spring 2002), California (on or before January 2003), Colorado (March), Kansas (early 2002), Maine (early 2002), New Jersey (January) and West Virginia (early 2002).

3. Several states have task forces that are 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. For example, the District of Columbia is designing a resource center to help the city create a service delivery model similar to Wisconsin's Family Care program. The District also is working to amend its waiver program, which serves individuals age 65 and older, to expand to serving adults under age 65 with physical disabilities and to provide attendant care and assisted living. Pennsylvania created a Home and Community-Based Services Project, which includes an internal governance structure, to a) create a seamless system of home and community-based services for consumers by striving for consistency across various programs and state agencies, b) share information and ideas across program areas to capitalize on the skills and expertise of the Commonwealth's human resources and c) coordinate resources and maximize efforts across program areas and agencies. Washington's internal workgroup and implementation (first with available funds and then with the new appropriations). The process spans the period from January 2000 to July 2004.

4. Most commissions are broad-based and have cross-disability policies in 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. For example, advocates representing older Americans are involved in at least 28 state task forces. (However, some state task forces do not include advocates because they are internal, state department commissions.) Several states also have web sites that provide useful information about their Olmstead-related activities (see box).

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   State Olmstead Web Sites

   Arizona

   Arkansas

   California

   Illinois

   Indiana

   Iowa

   Louisiana

   Mississippi

   Missouri

   Montana

   North Carolina

   North Dakota

   Ohio

   South Carolina

   Texas

   Washington

   West Virginia

   Wisconsin

   Wyoming
   
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5. To shift more resources into community-based settings, state commissions have issued numerous 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.

   Housing and Transportation. Most states cited a lack of affordable and accessible housing and transportation as major barriers to serving more people in the community. As a result, a vast majority of the commissions issued recommendations that extended beyond the traditional health care system into the housing and transportation arenas.

   Housing recommendations included creating:

   • A continuum of housing options that emphasize consumer choice;

   • Transition funds or temporary rent subsidies for people who are making the transition from institutions into the community;

   • More funding for home modifications such as ramps and grab bars;

   • Greater availability of Housing and Urban Development (HUD) housing and Section 8 vouchers for home ownership;

   • Incentives for more universal design housing where new housing stock has wider doorways and hallways and a bedroom and bathroom that are located on the first floor;

   • Higher rent allotments in Supplemental Security Income (SSI) and Supplemental Security Disability Income (SSDI) state supplements; and

   • Enhanced support services for housing.
     

   Transportation recommendations included:
   

   • Enforcing provisions of the Americans with Disabilities Act;

   • Providing non-medical transportation through general revenue (Medicaid reimburses only for medically-related uses of transportation);

   • Establishing a state oversight committee; and

   • Extending hours of public transportation and providing consolidated, fixed routes.

   Assessment and Data Collection. Two of the most important elements of the Olmstead planning process have been to assess how many people with disabilities currently are institutionalized who are eligible for services in the community and to decide if adequate data collection and information systems are in place to make these determinations. To that end, the vast majority of states considered a variety of recommendations to evaluate whether the existing assessment procedures can ensure consumer choice and foster consumer information and referral. Some of the recommendations in these areas follow.

   Assessment

   • The need for a coherent identification assessment process;

   • Person-centered planning and consumer choice;

   • Emphasis on assessment needs and preferences of individuals living in institutions;

   • Linking assessment with informing individuals of community-based options;

   • Development of a centralized "one-stop shopping" model, through which clients receive consumer-friendly information from one office instead of through a maze of agencies; and o

   • The need for more case management.

   Data Collection

   • Identification of individuals in institutions, on waiting lists and at risk;

   • Quality monitoring; and

   • Database development and information systems.

   Staffing. Most of the states acknowledged the severe shortage of long-term care workers as another major barrier to providing more home and community-based services. The key to providing good quality of care in home and community-based settings lies in having good staff, particularly competent nurses, home health aides, personal care attendants and other paraprofessional workers. Therefore, most of the commission recommendations in this area include:
   

   • Increasing wages and benefits·

   • Designing and funding new training and certification opportunities; and

   • Supporting the informal network of family and friends who provide the bulk of long-term care services in the community.

   Consumer/Provider/State Agency Education and Outreach.
   Most commissions did not think many of these sweeping reforms could happen without education for consumers, providers and state agency officials. Many states focused on strategies for publicizing and increasing the awareness of community-based services and supports through user-friendly and timely information. These strategies included:

   • Toll-free assistance lines;

   • Brochures and flyers;

   • Interagency training to foster information sharing among agencies and organizations;

   • Development of an inventory of home and community-based services;

   • Training for private providers and case managers; and

   • Better use of the Web as an information and outreach tool.

   Helping Individuals Make the Transition from Institutions into the Community. The goal of many plans is to prevent the unnecessary institutionalization of individuals, reduce waiting lists and help people who currently reside in institutions make the transition into the community, when appropriate. Of course, the recommendations in this area often go hand in hand with the recommendations regarding evaluation and individual assessment procedures. However, some specific recommendations follow.

   • Ensure that funding follows the person regardless of whether they are being served in an institution or in the community.

   • Identify appropriate nursing home residents, advise them of community-based alternatives and allow them to choose the most integrated setting of their choice.

   • Track the number of people who make the transition from institutions into the community. 

   • Create permanency planning for children who currently reside in institutions.

   Medicaid Waiver Program Expansion. Every state has federal Medicaid waivers to design programs that provide a wide range of home and community-based services-including adult day care, personal services, homemaker services and respite care-that are not paid for by the traditional Medicaid program. Nearly all the commissions recommended expanding these waiver programs to accomplish many of their plans' goals. Rather than pouring more state general revenues into home and community-based programs, the commissions focused first on the expansion of waiver programs, primarily to leverage the matching Medicaid federal funds. In addition, the states have more flexibility under the waivers than the traditional program because they can, for example, cap the amount of services and supports per individual and serve more people.

6. Implementation is not yet under way for most of the plans. Only four commissions-Illinois, Missouri, Ohio and Texas-issued their plans in time for the 2001 legislative sessions. Of the four, three have implemented some of their recommendations. Even in these three states, however, most of the strategies have not yet been implemented. This slow pace has frustrated many disability advocates, state officials and other stakeholders.
   

   Missouri. To implement the plan, the legislature has enacted legislation 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 with physical disabilities, transfer 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.

   Ohio. 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, which provides 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, which provides 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, which serves people who otherwise would require institutionalization in an intermediate care facility for the mentally retarded (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 people 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.

   Texas. The 2001 Legislature appropriated expansion money for all six community waiver programs and for development of transition services and alternative family-based options for children. 

   In addition, a few states that did not yet issue their plans enacted legislation and approved budget requests in 2001 because of their Olmstead activities. For example, after hearing from disability advocates on the Olmstead task force, 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 FY 2002, the program permits individuals to select, manage and control their services and to choose their personal assistants, including hiring family members (except spouses).
   
   

7. State budget shortfalls and declining state revenues will likely delay Olmstead implementation, but several federal opportunities could enhance systems change. 

   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. Executive branch agencies that set forth budget requests and legislators who hold the purse strings will be critical partners as they consider state program priorities in a challenging fiscal environment. It appears likely that terrorism and state safety issues will have top priority for any new resources available for distribution during 2002 sessions, although priorities are likely to vary substantially across the states. 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, however, the federal government has taken several actions-several of which are important to state legislatures-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 and/or offer maximum individual control;

   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.
      

   If state officials need technical assistance-offered by the National Technical Assistance Exchange for Community Living initiative-they can call Susan Reinhard at Rutgers Center for State Health Policy at (732) 932-3105, ext. 230 or Richard Petty at Independent Living Research Utilization at (713) 520-0232. These federal grant and technical assistance opportunities are, perhaps, the most promising recent development.

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Conclusion
States are in the early stages of implementing the Olmstead decision. The short-term effects of the decision have not been dramatic on the care settings for people with disabilities. Most states did not issue their plans until after the 2001 legislative session. The most important effect thus far is that it has caused providers, consumers and state officials from various departments to jointly discuss long-term care reforms. It also has caused the federal government to revise its policies in this area and to offer states flexibility and funding to develop innovative solutions. Finally, it has forced states to look at reforms not only in the health arena but also in the areas of transportation, housing, education and other social supports to fully integrate people with disabilities into the least restrictive settings. However, it is clear that Olmstead implementation-that is, ensuring that individuals receive care in the most integrated setting possible-will take many years, given the array of service delivery systems that require alteration; the erosion of state fiscal capacity, at least in the short term; and the challenge of complying with requirements of complex lawsuits related to Olmstead. It is likely that plans will be revised and priorities for implementation will be refined as time goes on. State plans are a work in progress that will evolve in response to funding, stakeholder input, agency-related initiatives, and continued growth and demand for community services and supports for people with disabilities. This study also 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. For more information on Olmstead activities in the states, please see the NCSL Olmstead webpage at www.ncsl.org/programs/health/disabil2.htm.

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