September 19, 2002
OLMSTEAD IN CONNECTICUT AND OTHER STATES
By: Helga Niesz, Principal Analyst
You asked for a comparison of Connecticut's Olmstead plan and progress in implementing the U. S. Supreme Court's Olmstead decision with other states' plans and efforts.
The U. S. Supreme Court ruled in 1999 in Olmstead v. L. C. that states cannot discriminate against people with disabilities by offering them long-term care services only in institutions when they could be served in the community, given state resources and other citizens' long-term care needs. The Court suggested two ways that states could demonstrate their compliance: creating a comprehensive, effectively working plan and having a waiting list for community services that moves at a reasonable pace. The federal Medicaid agency has given states some guidance, technical assistance, and grant funding to help them respond to Olmstead.
Connecticut's inter-agency Long-Term Care Planning Committee, assisted by a broader advisory council, has been addressing long-term care issues for the elderly since 1998, but its scope was later broadened to include all people with disabilities. In response to the Olmstead decision, the Department of Social Services (DSS) and the planning committee created the Community Options Task Force to specifically address community integration for people with disabilities. The task force released a plan in March 2002 that describes existing programs; discusses recent initiatives to increase availability of home and community services; provides short-term estimates of the number of people who can be transitioned back to the community; identifies barriers; and recommends numerous "action steps" concerning transition from institutions to the community, housing, supports needed, and community connections.
At least 42 states have some sort of task force or other group looking at how to implement Olmstead or otherwise improve long-term care. At least 18 states have completed plans or reports. Four of them (Mississippi, Missouri, Ohio, and Texas) appear to have the most comprehensive plans (i. e. , ones that contain specific timelines and budgets and designate agencies responsible for implementation). These four are discussed in more detail in this report. Others are available through the National Conference of State Legislatures (NCSL) website referenced at the end of this report. Most states are still in the early stages of implementing their responses to Olmstead.
Updated NCSL information should be available in November.
In 1999, the U. S. Supreme Court ruled that the unjustified isolation of mentally disabled patients in institutional settings is discrimination based on disability (Olmstead v. L. C. , 119 S. Ct. 2176 (1999)). The decision affirmed a prior l998 ruling by the U. S. Court of Appeals for the Eleventh Circuit (138 F. 3d 893). That Court found that Georgia health officials violated the Americans with Disabilities Act (ADA) by segregating two mentally retarded individuals in a psychiatric hospital instead of providing them with appropriate community-based care. The Supreme Court concluded that the ADA requires states to provide community-based treatment for people with disabilities when (1) the state's treatment professionals determine that such placement is appropriate; (2) the affected people do not oppose such treatment; and (3) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with disabilities. Although the plaintiffs in the case were two women with mental disabilities, the decision is generally understood to apply to all people with disabilities, as well as those who may be at-risk of being permanently or periodically institutionalized.
The decision points out that states' responsibility to provide care in the community is "not boundless," leaves some flexibility depending on the state's available resources and other disabled citizens' needs, and cautions that states cannot be required to fundamentally alter their programs.
The Court suggests that a state could demonstrate compliance by:
1. developing a comprehensive, effectively working plan for placing people in less restrictive community settings; and
2. keeping a waiting list for community services that moves at a reasonable pace, which is not controlled by the state's desire to keep its institutions filled.
In response to the decision, the federal Centers for Medicare and Medicaid Services (CMS) agency issued several letters to state Medicaid agencies urging them to prevent and correct inappropriate institutionalization and to review their procedures to assure that people with disabilities are served in the least restrictive and most integrated setting appropriate. The letters also urged states to actively include people with disabilities in the development and implementation of their plans. The letters emphasized the agency's and the administration's commitment to expanding home- and community-based services and offering consumers choices, using the flexibility of the Medicaid program and its waiver options. They offer states technical assistance and limited financial support in responding to the Olmstead decision. The latest letter, dated August 13, 2002, among other points, encourages states to continue their efforts to remove barriers to full participation in the community.
Since 1998, Connecticut has had an interagency Long-Term Care Planning Committee, which was initially charged with developing a long-term care plan for the elderly. The committee produced a preliminary plan in 1999 and its first plan for seniors in January 2001. The 2001 plan is available on the General Assembly's Select Committee on Aging's website at http: //www. cga. state. ct. us/age/LTCPLAN-FINAL2001. htm
The planning committee's next plan is due in 2004. In the meantime, legislation in 2001 broadened the committee's scope to include all people in need of long-term care instead of only the elderly. That same act took several steps toward emphasizing community settings by requiring (1) the committee to evaluate long-term care issues in light of the Olmstead decision, (2) the committee's plan to serve as a guide for state agencies' programs that serve people in need of long-term care; and (3) any state agency, when developing or modifying any program that assists or supports people with long-term care needs, to include, to the extent feasible, features that support care-giving by family members and other informal caregivers and promote consumer-directed care (PA 01-119).
The planning committee is advised by a broader Long-Term Care Advisory Council, whose members are representatives from the Commission on Aging, provider associations, advocates, people with disabilities, and one legislator.
A significant action the legislature took in 2000, at the planning committee's recommendation, involved removing the income limit for participation in the Connecticut Home Care program for Elders (CHCPE) for people who would otherwise have to be in a nursing home. The legislation removed the limit for both the Medicaid waiver and state-funded portions of the program, but the federal CMS still has not approved the change, so it is only effective in the state-funded portion for now and in a small, purely state-funded pilot program for Medicaid waiver clients whose income is slightly over the usual Medicaid waiver income limits (PA 00-2, June Special Session).
Legislation in 2000 also created a new personal care assistance (PCA) pilot program for people over age 65 who could not otherwise find adequate home care or who were already receiving Medicaid waiver PCA services before they turned 65. (The Medicaid PCA waiver program, operational since 1998, only covers disabled people from age 18 to 64. ) (PA 00-2, June Special Session).
Community Options Task Force: Olmstead Plan
In response to the court decision, DSS and the Long-Term Care Planning Committee created a separate Community Options Task Force in March of 2000 composed of state agency representatives, disabled people, their family members, and their advocates, to develop an Olmstead plan. The task force issued its plan, called "Choices are for Everyone: Continuing the Movement Toward Community-based Supports," in March 2002. Its vision is to "assure that Connecticut residents with long-term support needs have access to community options that maximize autonomy, freedom of choice, and dignity. " It affirms Connecticut's commitment to increasing community options to enable people with disabilities to live in more integrated settings. The task force calls it a "plan in progress" and recommends periodic review of the plan to monitor its effectiveness.
The plan describes existing programs and current efforts to increase availability of community services, discusses recent initiatives, provides short-term estimates of numbers of people who can be transitioned back to the community, identifies barriers, and recommends a number of "action steps" that the state should take.
Recent Initiatives. The plan describes the $ 800,000 federal government has granted Connecticut a Nursing Facility Transition Grant of $ 800,000 the state will receive over three years to transition 150 people from institutions to the community. The Connecticut Association of Centers for Independent Living will administer the grant. Some of the money will be used to establish a "common sense" fund to help pay for rental and utility deposits, household goods, and other things not covered by government programs. There is also a recently established Connect to Work Center in the Bureau of Rehabilitation Services, as a result of two federal grants. This project's goals are to help people with disabilities enter the labor force and provide a single access point for information on benefits, employment, health care, and personal assistance. Some other recent initiatives include enhanced opportunities to obtain assisted living services, and a public/private collaboration to create more supportive housing for people with psychiatric disabilities, additional funding for a jail diversion program for people with mental disabilities or substance abuse problems, and a three-year federal grant to include people with psychiatric disabilities in the community integration plan.
Transition Estimates. The plan contains some short-term estimates of how many people the various agencies can help transition back to the community or prevent from entering or re-entering an institution for the current budget biennium (7/1/2001 to 6/30/2003), apparently as a result of existing programs and new initiatives. For instance, it lists 503 people as "targets" for deinstitutionalization in FY 01-02 and 506 in FY 02-03.
Barriers. The plan identifies barriers to community integration, such as lack of public education about options, affordable and accessible housing, assistance in the transition process, adequate supports in the community, and enough competent and adequately compensated workers to provide the supports. It also discusses federal restrictions that act as barriers, such as the Medicaid program's institutional bias.
Action Steps. The plan recommends numerous "action steps" for removing the barriers to community integration, including plans for transitioning people from institutions to the community, housing, supports, and community connections. Implementation of the action steps is currently being overseen by the Long-Term Care Planning Committee. The transitions steps include developing a system to identify institutionalized people who want to live in the community, reviewing guardianship and conservator laws to make them consistent with independent living, educating transitioning individuals about the value of working with a peer who has already made a successful transition, exploring the possibility of developing a peer support network for transitioning people, and educating people that relying completely on paid support staff will still leave them vulnerable and about the importance of developing informal support networks. The housing steps include investigating how to improve reporting of accessible units to the Connecticut Accessible Housing Registry; educating architects, builders, and other housing professionals about accessibility; convening a task force to review fire safety and building codes; exploring tax incentives to encourage new homes and renovations to meet accessibility standards; and encouraging housing authorities to obtain federal Section 8 housing certificates for people with disabilities and ensure that they are distributed to eligible people.
The support steps include creating a strategic marketing plan to recruit personal assistants and personal managers for permanent and backup employment and a coordinated information source for backup personal assistants, encouraging the "community team" that helps the person transition to continue its involvement for up to a year after the move, working with the Department of Labor to develop programs to inform displaced workers and Bureau of Rehabilitation Services clients about personal assistance as a career, developing optional training programs for support staff for people with disabilities and training for people with disabilities who employ personal assistants, educating the public about Department of Transportation services and how to access them, and analyzing the fiscal impact of providing a state income tax deduction for medical services. The community connections steps include distributing materials the Nursing Facility Transition Grant project develops; developing training for people to become "bridge builders," who introduce the transitioning people to other community members; and assuring that translators, interpreters for the deaf, and other skilled communicators are available to provide information and assistance.
Members' Supplementary Comments. Supplementary comments by certain members of the Task Force, issued along with the main report, generally approved of the report, but expressed concern that it did not go far enough. The comments pointed out a lack of longer term numerical targets (the plan contains only targets for the current biennium), as well as a lack of a timetable and designation of who is responsible for the action steps (the Long-Term Care Planning Committee subsequently took these measures). The supplementary comments provide some additional analysis of how consistent the final plan is with the Olmstead Coalition's position paper and emphasize a need for more description of specific strategies in the plan, including a timeline and measurable outcomes, as well as long-term, meaningful numerical targets for integrating additional people into the community.
OTHER STATES' OLMSTEAD RESPONSES
At least 42 states currently have or have had some sort of work group, task force, or commission to address the Olmstead deciaion, according to NCSL. At last count, NCSL found that 18 states had some kind of a completed report or plan (Arizona, Connecticut, Delaware, Georgia, Illinois, Indiana, Iowa, Kentucky, Maryland, Mississippi, Missouri, Montana, North Carolina, Ohio, South Carolina, Texas, Wisconsin, and Wyoming). Most states that have completed plans are still in the early stages of implementation, but the impact, though small so far, is incremental and will increase over a number of years as plan recommendations are phased in, according to NCSL. NCSL is in the process of contacting all the states to further update their progress. They expect to finish their survey in November 2002, after which, if you like, we can update and expand on this report.
Four states (Mississippi, Missouri, Ohio, and Texas), have plans that stand out, according to NCSL, because they have a clear vision for systems change, specific strategies and goals, agencies responsible for each strategy, timelines, and budgets. We describe each of these plans briefly below, based on NCSL's summaries and our own reading of the texts. (These are not necessarily the states that are furthest along in actually making the shift from institutions to community integration. )
Several states had already, on their own initiative, made extensive efforts to increase home- and community-based services even before Olmstead was decided, notably Oregon, Vermont, and Wisconsin. Oregon, for instance, has worked to reduce the number of people in nursing homes since 1981, by shifting its funding and emphasis from nursing homes to alternative care. The state makes home care the first choice for people who need long-term care, and provides intermediate options such as adult foster care homes, residential care facilities, and assisted living for people who cannot stay in their homes but do not need or do not want to be in a nursing home. It is often cited as a model for other states and has, over the long-term, readjusted its system so that only about 30% of its people in need of long-term care are in nursing homes and 70% receive long-term services at home or in alternative community settings. See earlier OLR Reports 98-R-1417, 98-R-1434, 99-R-0805, and 99-R-0891 for information on Oregon and Vermont, and 2000-R-0004 for a general discussion of long-term care planning groups in the states.
In 2002, Vermont and Virginia became the 41st and 42nd states to create new task forces; a number of other states formalized existing task forces through legislation. NCSL also found legislation in 2002 concerning assessment, transitioning people from institutions to the community, data collection, education and outreach for consumers and providers, and consumer directed care options. It found legislation concerning consumer-directed care in Colorado, Florida, and Maine. And it found legislation concerning the federal grants. It did not find legislation concerning housing or transportation.
The Mississippi Access to Care (MAC) task force, formed in October 2000, was already active before March 2001 legislation formally established it. It issued its report to the legislature in September 2001. The plan's purpose is to make community services available by 2011 for all people with disabilities if they are recommended by professionals and requested by the individuals. It contains proposed specific budgets for the longer term -- the next ten fiscal years. The plan estimates the cost to the state of the new initiatives at $ 53 million in FY 03, from $ 32. 5 million to $ 75 million in FYs 04-10, and $ 33 million in FY11, the final year of the phase-in. The highest funding is proposed for 2005 to 2007 when state tax collection is expected to rise because of a new Nissan plant planned to be up and running by then.
The MAC plan recommends a number of systematic changes in the areas of housing, transportation, assessment, training, and consumer education. But because of the current fiscal shortfall, the state is likely to implement the lower cost recommendations first, according to NCSL. The plan emphasizes the importance of training. It also advocates a single point of entry to services. It stresses the importance of easily accessible transportation and identifies a framework for creating a comprehensive transportation system. It further focuses on accessible housing and recommends earmarking a percentage of Section 8 housing vouchers for people with disabilities.
Mississippi has set itself a goal of identifying and moving 1,035 people out of institutions and into the community by 2011. It also has a goal of providing subsidized assistance to personal care homes for 306 adults and emergency care shelters for 270 vulnerable adults by 2008. Other goals, by 2011, are to expand supported living services in community-based housing to 400 more people with mental retardation or developmental disabilities (MR/DD), add 17 more group homes for people with serious mental illness, increase service to 136 more people with MR/DD and 88 more elderly with MR/DD, and expand supervised apartments for people with serious mental illness by 1,264 new units. In the home and community-based waiver program, the plan sets goals of increasing the number of people in the program by 750 per year for the next five years, expanding the service array, increasing provider reimbursement rates, adding 500 more people per year for the next five years to the independent living waiver and expanding their menu of services, adding 100 people per year for five years to the assisted living waiver, and adding 500 more consumers by 2004 to the traumatic brain injury and spinal cord injury waiver. Another goal is to apply for a new waiver for children with serious emotional disturbance and serve 1,500 of them by 2011. The plan also contains similar goals in a broad range of other types of support services. The full plan is available at http: //www. mac. state. ms. us/MAC_Final. pdf.
Missouri's Home and Community-based Services and Consumer Directed Care Commission issued its plan in 2000. The plan describes existing programs, participants, and existing funding; discusses and makes recommendations concerning development of outcome assessment tools; identifies the number of institutionalized people with disabilities in the state; and identifies the number of waiting lists for services, the number of people on them, and analyzes the pace at which the lists move. It also examines whether the available information on community services is adequate for people to make informed choices.
The plan recommends modifications in seven areas: consumer-directed personal care assistance, housing, interagency coordination, Medicaid services, funding mechanisms, transportation, and employment opportunities for people with disabilities. Specific recommendations include increasing availability of personal care assistant services, increasing their wages, and giving them more training; clarifying the legal status of having them administer medicines and perform other nursing functions; and improving background checks. Others include improving enforcement of fair housing laws; increasing funding for accessible, affordable housing; exploring various tax credit options, requiring use of universal design (making housing routinely accessible to disabled people) in any state-funded housing program; and making information about housing more available through several measures, such as a web page.
The plan also recommends establishing an interagency mandate to "blend funding streams" so people can receive help from more than one agency and to designate a lead agency when several agencies are involved with one client and creating a universal application form for all programs. Other recommendations are to increase Medicaid income and asset limits, expand the types of exempt assets, explore covering all Medicaid waiver services as state plan services, monitor the pace of waiting lists, and make Medicaid services comparable between nursing homes and community settings. The plan recommends additional supports for transitioning people, such as implementing a person-centered approach, allowing them to set aside part of their Social Security checks while still in the institution to create funds available to set up the new household, and providing extra funding for the transition.
The plan contains timelines for various actions and agencies responsible for them for FYs 01 and 02. It does not set specific longer-term goals or benchmarks for the number of people to receive home and community-based services. The report can be found at http: //www. dolir. state. mo. us/gcd/Olmsteadindex. html
In 2000, before completion of the plan, the legislature passed legislation that allows money to follow the individual when people leave Department of Mental Retardation and Developmental Disabilities state-operated habilitation centers or nursing homes. Personal care services are now part of the state plan and all Medicaid beneficiaries who need them are entitled to them. In 2001, the legislature provided transition training and created a $ 125,000 transition fund to give people one-time grants of up to $ 1,500 to help them set up their new household.
Since the plan was issued, the governor has formed a new commission to continue the effort and implement the plan and the state has received a Real Choice Systems Change Grant.
Ohio's task force (Ohio ACCESS), created by a 2000 executive order, issued its report in February 2001. The report includes a comprehensive review of Ohio's services and supports for people with disabilities and contains short- and long-term (six-year) recommendations for improving services. The report's new vision centers on consumer self-determination and a person-centered planning approach. Its proposed executive budget for FY 02-03 is $ 145 million for new initiatives and expansion of programs. (Budgets for long-term solutions and the agencies responsible for them were not detailed. ) The short-term recommendations for consideration in the 02-03 biennial budget center on expanding waiver programs; the longer-term recommendations focus on labor issues. The report concludes that home and community-based options should be the norm rather than the exception. It relates consumer advocates' concerns that the Medicaid program's structure is "exactly backwards" - instead of community services being "optional" or "waiver" services, these should be the norm and a waiver should be needed for institutional care, according to the report.
The governor's budget for 2002-03 includes 1,300 more elderly waiver slots for FY 2002 and 1,600 for FY 2003 (there are currently 24,000 slots). It adds 500 slots in FY02 and again in FY03 for the Home Care waiver (currently there are 8,200 slots). It also increases slots for several other waivers, and provides funding for transitional costs for people moving from institutions to the community. The report is available at http: //www. state. oh. us/OBM/media/reports/ohioaccessrpt. pdf.
In response to its governor's executive order, the Texas Health and Human Services Commission issued the Promoting Independence Plan in January 2001. The plan makes a number of recommendations and coordinates the efforts of the agencies that provide long-term care. The legislature enacted several of the recommendations and state officials are in the process of developing an implementation timeline. One new law requires a cost study of institutional care and the ability to move funding with the consumer who moves into the community. Another creates an interagency task force to ensure appropriate settings for people with disabilities and a pilot program for community-based alternatives.
The Texas plan has some limited targets concerning its mental health and mental retardation waiting lists and proposes to transition 50 people from nursing facilities and to intensify permanency planning for 75 children in nursing facilities. It proposes to increase certain waiver slots by specific numbers by FY 03.
The Texas Department of Human Services is using a three-phase approach to identifying and assessing people to whom Olmstead applies. Implementation for Phase 1 began on December 1, 2000 and involves informing nursing home residents about community-based programs, training agency staff, promoting community awareness about choice, collecting baseline data about nursing home residents who want to transition to the community. Phase two is being implemented over a two-year period that started September 2001, with a legislatively-approved pilot program in three sites in the first year. The department will hire and train relocation specialists, develop an identification process and assessment instrument, track data, and conduct community awareness activities. Phase three will divert people from institutions by placing additional staff in hospitals and rehabilitation centers. The plan is available at: http: //www. hhsc. state. tx. us/tpip/tpip_report. html
More details on the state plans are available at NCSL's web site: The States' Response to the Olmstead Decision: A Work in Progress.
The website (www. ncsl. org) also contains links to other Olmstead and long-term care related materials.
The CMS letters can be found at: