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Indiana, like many other states, is in the midst of major change in its delivery of services to the elderly and persons with disabilities. In cooperation with advocates and persons with disabilities themselves, it is in the process of more fully integrating persons with disabilities into community-based living. An executive order by Governor O'Bannon makes clear his intent to plan for moving individuals into community settings. The Family and Social Services Administration (FSSA) is implementing this Executive Order with a planning effort designed to be responsive to existing and potential problems and sensitive to the needs and priorities of persons with disabilities, their families and advocates.
This document is a work-in-progress and is intended to generate discussion. It should be viewed as a jumping-off point for additional comments and changes as we move toward development of the final set of recommendations and strategic priorities. We want consumers, family members, advocates and providers to be able to clearly see the general direction we are going in this planning process. We welcome guidance from your own experiences, and to tell us if we are on the right track. We have listened carefully to you and intend to keep on listening and soliciting your input.
Efforts thus Far
Much has already been done to achieve community integration. Indiana is committed to provide or expand services to the elderly and Hoosiers with disabilities in the most integrated, community-based setting possible. FSSA, with its community partners has dramatically expanded the availability of community-based services over the last four years.
FSSA, through the CHOICE program, Medicaid waivers, and the work of the Division of Mental Health and the Division of Disability, Aging and Rehabilitative Services, has moved a significant number of persons out of institutional settings and into community-based arrangements. It has closed New Castle State Developmental Center, Northern Indiana State Developmental Center, and Central State Hospital. It has also significantly reduced the populations at Muscatatuck State Developmental Center, Fort Wayne State Developmental Center and in the state hospital system. Reductions in bed capacity are integrated into the construction of the new hospital facility in Evansville.
Further, work has been done in developing the infrastructure necessary to prevent unnecessary institutionalization across the populations FSSA serves. In response to a community-based Task Force appointed by the Governor, FSSA worked with advocates and members of the legislature to appropriate $39 million to provide services to persons at risk of institutionalization in their communities. As a result of this funding, 1300 persons with developmental and other disabilities have been served. Significant systems to improve quality and ensure capable monitoring and patient protections are in development. In addition, a Governor-appointed Task Force on Long-Term Care has defined standards for assisted living and adult foster care Medicaid waivers, further adding to Indiana's array of community-based options.
The Division of Mental Health has initiated a special program to move persons with long-term stays at its facilities into community-based arrangements. Already, this program has integrated 23 persons from state institutions into community living. Finally, the Governor's concerns regarding the future of the state's institutions led him to commission a study of the future of these facilities. This task force known as the Governor’s Commission on State-Operated Facilities reflected the wide range of interests involved in this question. Its report recommended downsizing the existing institutions and regionalizing the systems of care to better serve a community integrated clientele.
Governor O'Bannon's Executive Order
However, it is clear that more work needs to be done in developing and funding significant changes to the way the current system operates. In order to integrate the high level planning efforts which began under his leadership, and to ensure that Indiana carries out this important work in a timely and complete manner, Governor O'Bannon signed Executive Order 00-25 on September 18, 2000. The executive order requires that FSSA conduct a comprehensive study of all services and programs available to people with disabilities in Indiana. In this effort, FSSA shall evaluate current systems of service delivery, identify the array of current services available in Indiana to persons with disabilities, assess the demand and desire for receiving these services in a less restrictive setting, and identify barriers to achieving total integration into the community where the demand exists.
The executive order requires a report to be developed, with input from advocacy groups, consumers, providers and others. It is the key element in making sure all the state’s diverse efforts focus on Indiana’s major goal of ensuring community integration for every individual who can benefit from it.
The Olmstead Case
In 1999, the Supreme Court of the United States ruled, in Olmstead v L.C and E.W., that keeping persons serviced with public funds in an institutional setting when they could benefit from community living was a practice of segregation which violated the Americans with Disabilities Act of 1990. The Court concluded that when a state's treatment professionals determine that life in the community benefits a person and the affected person does not oppose this opportunity, then this choice should be carried out when it can be reasonably accommodated. Such "reasonable accommodation" takes into account the resources available to the state and the needs of others with disabilities. It also does not require a "fundamental alteration" of the State's services and programs.
While limited by these practical matters, the ruling has the potential to unleash a large amount of controversy when persons within institutions and their advocates seek to address individual cases and change policies regarding whole groups of persons who might be affected by this ruling.
However, the Court indicated that:
If, for example, the State were to demonstrate that it had a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that moved at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated, the reasonable-modifications standard would be met.
Development of such plans clarifies, within each state, many, if not all of the issues that could lead to disagreement. In planning for community integration, Indiana will not only bring about consistent directions and policies for community integration, but will also provide the consensus desired by this important Supreme Court decision.
Crafting a Comprehensive Effort
FSSA is committed to the following three principles in the development of the plan:
To draft the plan, the Secretary of the Family and Social Services Administration appointed an internal Action Team composed of the top administrators of programs for persons with disabilities. The Secretary also appointed three subcommittees composed of consumers, families, providers and advocates to make sure that consumers, families and all affected by the plan would have input in its construction. These subcommittees are focused on issues in mental health, developmental disabilities and aging/physical disabilities. In addition, expert consultants were engaged to assist in getting public input and providing technical expertise and assistance in drafting the plan.
Our process has been:
Your feedback on this working document will assist us in developing the more detailed recommendations that will lead to action steps and benchmarks, in a report to be presented to Governor O’Bannon by June of 2001.
Organization of this Report:
This report has the following sections:
A – E Appendices:
There are 5 appendices. Appendices A (consumer issues) and B (provider issues) present the results of the direct feedback we have obtained from consumers and providers. Appendices C – E include discussions of the important issues in mental health (C), developmental disabilities (D) and aging/physical disabilities (E): Much input focused upon issues related to specific populations. To record and reflect these issues we have used the format of individual reports. These examinations first outline the overall systems of services provided, with needs and problems as seen by consumers, families, providers, advocates and other interested persons who provided their viewpoints to us.
These also outline strengths and successes that may help us build solutions to the needs and problems. They suggest ways that other states have solved comparable problems and met similar needs for each population group. Finally, they propose options for your review and comment to help Indiana develop specific changes to take place.
What is Next?
In the next round of the planning process we will develop more detailed recommendations, strategies for accomplishing the necessary changes, and ways to measure our progress toward achieving our vision of community integration for all persons who can benefit from it. Next steps will include:
This plan to be a "living" and flexible roadmap. We will improve and refine it as we measure our progress and work more closely with consumers and their families and advocates and those who provide service to make community living a reality for more Hoosiers with disabilities.
II. Major Policy Directions
Through testimony recorded at public meetings, information solicited through interviews and focus groups and analysis of Indiana's current efforts, six major policy directions that will advance the development of community-based services have been identified. These policy directions are outlined below, and broad options for change that cut across all disability groups are given. These options are not exhaustive, but are meant to illustrate some of the specific actions that can lead to progress in each policy area. In later sections of the planning document specific to each disability group, more specific options elaborate how required changes in each area could be tailored to the particular needs of these individuals with disabilities. It must be noted that these are all changes to current structure and practice that will take time to craft and resources to implement. Thus, funding questions, while important in the context of implementing specific actions, are not appropriate for a planning document such as this. Every specific action has a "price tag" in time, staff resources and funding; until the specifics of such actions are developed in an operational context, it is not appropriate to insert such figures here.
Policy Direction #1
Increase Consumer Choice: Enable individuals to receive the types of services they desire in the location they prefer.
Consumers should have the ability to live and work in the location they prefer, with appropriate supports and services to enable them to do so. Funding should follow the consumer, not the provider, and should be adequate to meet the needs of all that qualify.
Policy Direction #2
Provide information, assistance and access to consumers to increase their opportunity for informed choice
Information on services and funding needs to be easily available to all people with disabilities. Access to these services needs to be strengthened and provided in culturally appropriate ways for all of Indiana’s citizens.
Policy Direction #3
Support the informal network of families, friends, neighbors and communities
Family caregivers provide far more supportive services for people with disabilities than is provided through paid services. With family size shrinking, more women in the work force and the population growing older, the ability of family caregivers to sustain this level of effort is strained. Providing support to caregivers becomes ever more important. In addition, volunteer efforts should be recognized for the value they provide. Self-advocacy, support groups, and other creative ideas for enabling individuals with disabilities to provide mutual support and assistance should be fostered.
Policy Direction #4
Strengthen quality assurance, monitoring systems, complaint system, and advocacy efforts
Hoosiers deserve high-quality services wherever they receive them. Consumers need better information on the quality of care delivered, and deserve an effective system that responds to consumer complaints in a timely way.
Policy Direction #5
Increase the system capacity for provision of high quality care
In many areas, the capacity of the service delivery system needs to be strengthened. The state agency infrastructure needs to be adequate to recruit providers and assist in development of new alternatives. Data and system issues such as timeliness of provider payments need to be addressed.
Policy Direction # 6
Create a coordinated workforce development system that recruits and supports a stable resource of direct support staff.
In order to meet the needs of current and future numbers of persons with disabilities needing supports and services so they can live and work in communities, the pool of workers with sufficient skills and training needs to significantly increase. It is important that the state take steps to ensure a stable and motivated workforce.
Consumer Needs as Reported to FSSA Consultants Through Interviews, Focus groups and Public Meetings
Focus of the Consumer Needs Discussions: Consumers who live and work in communities need a safe and comprehensive system of supports and services that allows maximum individual choice.
PROVIDER IDENTIFIED NEEDS AND BARRIERS
These comments were accumulated at a number of meetings, interviews and focus groups conducted by the consultants in January and February 2001.
State action plan needed now (Barriers caused by system)
Services for Adults with Severe Mental Illness
The primary focus of this section is services and supports for adults with serious mental illness, who are eligible for the Hoosier Assurance Plan (HAP). Eligibility requirements include having a diagnosis of a serious mental illness and an income that is less than 200% of the federal poverty level. The Hoosier Assurance Plan is one method by which the Division of Mental Health (DMH) purchases services for persons with serious mental illness. It accounts for almost 80% of DMH funded treatment services for adults with serious mental illness. The other 20% funds specific treatment programs for moving long-term clients from state hospitals, supporting people in the community, consumer run programs, and other projects.
The mental health system for adults with serious mental illnesses includes services provided primarily through Community Mental Health Centers (CMHCs) and long term inpatient services provided in State Operated Psychiatric Hospitals (state hospitals). CMHCs must provide a full set of services, as described in statute. All admissions to state hospitals must come through a CMHC. Almost all of the patients not involved with legal violations who are admitted to a state hospital are under a civil commitment. In effect, almost all mental health services for HAP enrollees are controlled by a CMHC. The state hospitals operate at almost full capacity. Community services are under funded. Community support practices shown to be successful in research have not been widely implemented.
Hoosier Assurance Plan
Under the Hoosier Assurance Plan (HAP), the DMH contracts with Managed Care Providers (MCPs) for a continuum of care. Each MCP must have a community mental health center as a provider, since only CMHCs can approve state hospital commitments. Currently, all of Indiana's MCPs, except one, are either CMHCs or networks of several CMHCs.
Managed Care Providers (MCPs) receive an allocation for each person they enroll in a given year. The allocation is annual. This allocation is tied to a rate based on an individual’s diagnosis and severity and is based on "net" costs after other sources of funding have been applied. In theory, this will provide individual based funding that is adequate to provide the necessary services from the continuum of care.
HAP, however, is not an entitlement and HAP expenditures are controlled by the enabling statute to the amount of the appropriation, regardless of the number of enrollees or their needs. HAP is under funded, even when considering HAP funds are leveraged to pay for the non-federal share of an extensive Medicaid reimbursed rehabilitation services program.
In current practice, each county receives an allocation of funds according to a formula. These funds are further allocated to the MCPs that operate in the county, based on the previous year’s enrollment and the HAP rates that are applied to those enrollees. FSSA looks at what would have been paid if all enrollees were paid in full, and then divides available resources proportionally.
In 2000, the HAP allocation was 83% of the amount needed to pay the full rate for the persons enrolled. This varies by provider, from a low of 51% to a high of 113%. The Division of Mental Health estimates approximately 59% of the eligible adults with serious mental illness are enrolled in HAP.
Through the HAP, Indiana has shifted much of the financial risk and the responsibility for service delivery to the MCPs. The MCPs are required by contract to serve all persons in need of mental health services who come to them, up to the limits of the MCPs’ capacity. They are the community safety net for all Hoosiers.
State Operated Psychiatric Hospitals
State hospitals are funded by the state, and are in many ways the safety net for MCPs. The total beds in the system are allocated among the MCPs, based on the number of people that the MCP cared for in the community. If an MCP exceeds its allotted beds, it must arrange to "borrow" a bed from another MCP, or pay a significant fine. In essence, the supply of state hospital beds is "free" to the MCPs, which they manage as part of their overall pool of resources.
The census for the state hospitals is approximately 1400. On average, the state hospitals admit 1000 individuals and discharge 1000 individuals each year. Adults with a serious mental illness, with no developmental disability or involvement with a violation of law, make up about 63% of the hospital population. There is a concerted effort to develop community alternatives for long term state hospital patients. CMHCs are asked to prepare proposals for deinstitutionalization. FSSA expects that 115 people will move to the community this year, with another 100 people moving in the next two years. This program relies on the financial and mission driven efforts of CMHCs and MCPs to prepare plans and funding proposals, and then to deliver services. The state is supporting the full cost of care, less Medicaid receipts, outside of the HAP described above.
By Indiana statute, MCPs have the obligation of screening people entering the state hospitals, and being involved in treatment planning and service monitoring after they leave the hospitals. That same statute requires the MCP to provide case management while the patient is in the state hospital, and envisions the MCPs involvement in the state hospital treatment teams. Nevertheless, consumers and family members express concern about poor connections and cooperation between state hospitals and community services, and a lack of shared planning and program development within the state hospital system.
The recent report of the Governor's Council on State Operated Facilities calls for a reduction in the SMI population from 875 to 475 by the year 2005. (This does not include individuals on high security units or individuals with legal violations). The report also calls for a stronger regional focus for the remaining facilities.
Behavioral health services are excluded from the Medicaid managed care program, and continue to operate under fee-for-service. In addition, Indiana utilizes the "rehabilitation option", which includes targeted case management, in order to provide Medicaid funds for community-based services. Only CMHCs are eligible to receive funds through the rehabilitation option.
The state share of Medicaid funding for the rehabilitation option for each CMHC is deducted from the HAP allocation. Statewide, half of the HAP appropriation goes for Medicaid match, and returns over $120,000,000 per year for Medicaid reimbursable services.
HAP eligibility is at 200% of the federal poverty level, which is more generous than Medicaid eligibility. This leads to a disconnect in Medicaid eligibility. Mental Health advocates in Indiana are concerned over what they see as overly strict standards for determining Medicaid eligibility under disability provisions.
Each county must levy for mental health services and pay those funds to the CMHCs operating in their county. These funds are not dedicated to providing services to HAP eligible persons, although they can be used in this way.
From the MCP perspective, there are conflicting financial incentives in place. Because HAP funding does not cover the full need, each additional person served is less likely to bring funding or resources, such as health insurance, needed to provide services. So the MCPs are in a position to lose money on additional enrollments. On the other hand, a reduction in the number of enrollees will result in less funding in the following year.
State funding of state hospitals and the allocation of beds to MCPs has created a situation in which MCPs may have an incentive to keep "their" beds full. MCPs can use the funds appropriated for state hospitals to deliver alternative services in the community only through special programs instituted by the Division. MCPs also continue to receive the HAP allocation when a person is in a state hospital. Medicaid eligible HAP enrollees bring in additional federal funding which enables providers to serve other consumers. Medicaid funding received by CMHCs exceeds HAP funding.
Provider Qualifications and Consumer Choice
Only MCPs are eligible to receive HAP funds, and MCPs must include CMHCs. Only CMHCs are eligible to bill under the Medicaid Rehabilitation Option, and to place people in state hospitals. Qualified clinicians can bill Medicaid directly for other covered services. Many areas of the state have only one CMHC. CMHCs must be accredited.
MCPs must provide an array or continuum of services that is delineated in statute. This continuum is very broadly defined, and has been interpreted so as to give maximum flexibility to the MCP in devising a service array. All of the MCPs, for instance, must provide community based inpatient services, residential care, case management, family support services, and others.
The Division is in the middle of a long and arduous process of developing standards for each of the services under the statutory continuum. These minimum standards begin to provide a common vision about what care must be.
Over 80 group homes are licensed by the Division, and are widely available across Indiana.
The Division has announced a major initiative to fund Assertive Community Treatment in the next fiscal year, and has contracted with national leaders to develop regulatory standards for ACT. DMH has also initiated a procurement process to create a center to teach and train ACT teams.
In order to utilize HAP and rehabilitation option services, consumers must go to a MCP to receive services. In areas of the state in which there is more than one MCP, they are able to select an agency once a year at the beginning of the state fiscal year. If they switch at another time, the HAP allocation does not go with them and the receiving MCP can refuse to serve them. Consumers may have a choice of personnel within a MCP, but this is up to the MCP.
Both CHMCs and MCPs are responsible for making available the full continuum of care and providing the necessary services to HAP enrollees. Providers have discretion as to how this is done. They are accountable to their governing boards and for compliance with contracts. CMHCs and MCPs have internal grievance procedures for consumers.
DMH operates an ombudsman program through a contract. In addition there is a statewide toll free Consumer Line operated under contract. Calls to this number are logged, rated by type and urgency, and reported to DMH and the provider. DMH staff monitors these complaints, ensuring that responses are within mandated time lines, and that disputes are appropriately resolved.
The Division's data system is augmented by routine and special clinical audits. Routine audits verify information in the data system and verify that the clinical record supports the functional assessment completed on each client. These audits track error rates on providers from year to year, and show a consistently decreasing error rate.
Special audits can be triggered by statistical outliers or consumer complaints. Special audits have resulted in loss of contracts, and contractual paybacks.
The Division's report cards are published periodically, and provide information on each MCP based on clinical change scores, on the results of state wide consumer surveys, and on survey information provided by the MCPs.
Because the Division supports consumer choice and believes that choice is based on information and knowledge, a new program has been instituted called Supporting the Hoosier Assurance Plan through Education (SHAPE). This program is intended to inform consumers about their rights and options in the public mental health system. Web pages, educational packages, and toll free information services will be providing information to all consumers receiving services through MCPs. Consumers will be manning the telephones, and the SHAPE program will take over responsibility for editing and distributing report cards and similar material.
When the SHAPE program is fully implemented (Spring of 2001), consumers and family members should see reductions in the problems which have raised their concerns about the lack of information about the system, services, and choice for consumers and family members.
In the same way, advocates commonly voice concerns about system quality and accountability. The Report Card implemented by FSSA is seen as promising, but is felt to be not very useful in its first versions. The Consumer Line is seen as a good step. Consumers and family members who are self-advocates are felt by consumers and families to get better services.
Concerns of consumers, families, advocates and providers can be summarized around several issues.
The questions facing Indiana include:
Indiana’s system of mental health services has many strengths. Some of these include:
The Surgeon General’s Report on Mental Health, issued in 2000, provides summary of research based best practices for the treatment of people with severe mental illness. The report emphasizes that mental health services must include self-help and advocacy, and must link to the overall human services system.
"Among the fundamental elements of effective service delivery are integrated community based services, continuity of providers and treatments, and culturally sensitive and high quality empowering services. Effective service delivery also requires support from the social welfare system in the form of housing, job opportunities, welfare and transportation."
The report goes on to describe best practices, including:
These practices are all present in some way in Indiana. They are not, with the exception of case management, uniformly available and accessible to consumers.
Services for Persons with Developmental Disabilities
In recent years, Indiana has made a commitment to serve persons with developmental disabilities in community-based settings. The focus of the Family and Social Services Administration (FSSA) has been to move individuals from large institutions to smaller, less restrictive apartments and houses. A recent analysis indicated that the rate of reduction in the census of Indiana’s state operated institutions was 9% from 1993-2000 (Braddock and Hemp, 2000a). Central State Hospital was closed in 1994, New Castle State Developmental Center in 1998 and Northern Indiana State Developmental Center in 1998.
In addition, several large, private intermediate care facilities for the mentally retarded (ICFs/MR) were closed in 1998, offering individuals opportunities to live in smaller, community-based settings. During 1997-2000, Indiana’s large private ICF/MR resident census decreased by 16% (Braddock and Hemp, 2000a).
Beginning in 1992, Indiana provided home and community-based services to persons with mental illness and developmental/intellectual disabilities through an ICF/MR Waiver. In its first year, the ICF/MR Waiver served 164 individuals. In January of 2001, 2294 individuals were receiving waiver services under the ICF/MR waiver. In addition an Autism waiver served 194 persons and a Medically Fragile Children waiver served 127. In January of 2001, 3795 persons lived in group homes. An additional 3315 persons were supported by Individual Community Living Budgets that are 100% state-funded.
Types of services typically found (but not limited to) in all waiver programs include:
Although many persons with developmental disabilities have made transitions to smaller community settings, a large number of individuals remain in state-operated facilities and large, private ICFs/MR. Of continuing concern is the significant number of individuals with developmental disabilities who live in nursing homes. In spite of the increase in services and supports available for community living for individuals with developmental disabilities in the last few years, there is still a need for more services and resources.
Public input regarding the waiting lists for services has identified the following consumer concerns:
Additional consumer, advocate and provider concerns are:
A variety of supported living services are also available through the Bureau of Developmental Disabilities Services (BDDS) funding streams and consumers can apply for these services through the BDDS District Office. Persons are determined to be eligible by a BDDS service coordinator or Vocational Rehabilitation Services (VRS) counselor.
Since 1999, FSSA has had the goal that all Individual Services Plans for individuals with developmental disabilities are to be developed through a person-centered planning process. Person-centered planning is being done for individuals residing in state operated facilities and individuals receiving services in the community. Person-centered planning is not usually done for individuals residing in large private ICFs/MR, group homes or nursing homes. Testimony and other input has shown that many eligible persons with developmental disabilities and their families do not feel that they have a freedom of choice when they select services and support options. They sometimes feel that their individual plans do not meet their needs.
Governor O’Bannon’s interest, commitment and willingness to provide the leadership that is needed to achieve community integration of persons with disabilities has been made clear throughout his term. Under his stewardship, there are a number of plans that have been developed in the last few years that articulate the values, vision, and outcomes that need to be present when implementing needed changes.
The Comprehensive Plan for the Design of Services for People with Developmental Disabilities – July 1998, was submitted by the Indiana SB 317 Task Force and suggested changes that have been embraced by FSSA. The Governor’s Council on State-Operated Care Facilities, created by the Governor in 1999, issued its report in November of 2000. The report outlines specific recommendations for both the development of community services and the role of the state-operated care facilities in the future. There are also plans from the Step Ahead Councils, the Indiana Governor’s Planning Council for People with Disabilities (Five Year State Plan FFY 2001 –FFY 2005), and the Indiana Conversion Task Force Recommendations of January 2000.
The past four years have seen an extraordinary effort by FSSA to move persons from state-operated facilities and large ICFs/MR to community settings. Since 1998, 677 individuals have moved into less restrictive settings. The agency is also considering allowing 404 individuals living in "sheltered living" homes (the least restrictive/supervised settings) to move into community apartments and houses utilizing Medicaid waiver funding for needed services. Those 404 "beds" could then be converted into homes for persons who require a higher level of support and supervision and who are currently living in large congregate settings.
FSSA is also working with advocates to gain additional funding for community-based services. The legislative appropriation for state fiscal years 2000 and 2001 added $39 million to maintain persons at risk of institutionalization in their communities. Through this money an additional 1300 persons have received services and supports. This appropriation is also being used to improve the quality of services provided and ensure that appropriate monitoring and patient protection strategies are in place.
FSSA is in the process of revising the ICF/MR Medicaid waiver. This revision will assist in ensuring a quality program that is: responsive to changing consumer needs and choices; managed well; supported by clear program oversight; and better able to accommodate the growing needs and changing preferences of consumers over the next several years.
We have contracted with Celia Feinstein and Associates, a nationally recognized group of consultants, to assist with an assessment and revision of the Medicaid waiver waiting list tracking system. These individuals conducted a waiting list study for Pennsylvania which led to a better managed system. They developed a screening instrument to assist with determining urgency for need for services.
The Bureau of Quality Improvement Services has been established within the Division of Disability, Aging and Rehabilitative Services. They are responsible to provide leadership for continuously assessing and improving the quality of services through responsible use of information. Their functions include: assuring compliance, developing and monitoring program and provider standards and conducting research and trend analysis. Two subcommittees operating within this structure are the Mortality Review and Risk Management Subcommittees.
The Risk Management subcommittee reviews aggregate data, including data from the BDDS Incident Reporting System. Their charge is to identify risk management issues and trends and to develop recommendations for change.
The Mortality Review subcommittee retrospectively reviews deaths of individuals with developmental disabilities who receive services in State Developmental Centers and the community. Their charge is to identify trends and or systems issues and develop recommendations based on these reviews.
In October – December 2000, FSSA conducted a field test of an Enhanced BDDS Incident Reporting process. The purpose of the field test was to establish a basis on which to develop a revised Incident Reporting Process and form. The revised process was developed considering input from residential providers, vocational/habilitation providers, case managers, AAA staff and state staff. The procedures are more explicit about defining what we expect people to report. State responsibility for tracking incidents and monitoring outcomes are also discussed. More than 600 individuals were trained during February and March 2001 regarding expectations for using the process, notifying all appropriate parties and completing the forms. The revised process and forms will be fully implemented April 1, 2001.
FSSA has developed the Developmental Disabilities Automated Resource Tool (DART) automated tracking system. Data collected includes: client demographics, fiscal information, service needs, and incident report information. Plans call for web based data entry in the future.
In the Fall of 2000, Indiana named its first full time Ombudsman for people with developmental disabilities and their families. The Ombudsman’s charge is to receive, investigate and attempt the resolve complaints and concerns that are made by or on behalf of individuals with developmental disabilities. Action taken as a result of the investigation is reported to the individual who made the first contact. Individuals can contact the Ombudsman via a toll free number. The ombudsman is also active in the Risk Management and Mortality Review subcommittees.
The Indiana Institute on Disability and Community (IIDC) has been contracted to develop and provide training on person centered planning. Training participants include Area Agencies on Aging (AAAs), Vocational Rehabilitation Services & Bureau of Developmental Disabilities Services staff, the Protection and Advocacy Agency, case managers, schools, community rehabilitation centers, centers for independent living, diagnostic and evaluation teams and others interested in person centered planning. Training is being provided at twelve sites statewide from February – April 2001. IIDC will also develop and present a 3-day intensive facilitator training on person centered planning approaches. The purpose of this training will be to prepare individuals to facilitate person centered planning.
There are a number of states and pilots for consumer-directed services and supports that Indiana can look to for direction on how to proceed in redesigning the service delivery system to meet the needs of its unique blend of consumers, families and providers. Indiana can look to the states of Washington, Minnesota, Oregon, Kansas and New Hampshire to learn from their experiences with moving persons out of institutional settings and into communities. Of particular interest would be Minnesota’s self-advocacy training and Quality Assurance support system. Some states, such as Arkansas have experience with the "Cash and Counseling" demonstration. There are also a number of states that have experience with flexible models for the provision of non-traditional community supports and reduction of barriers to access to needed services and supports. The final report will detail recommended service options that enhance the strategies that Indiana has determined it will implement.
Services for the Elderly and Persons With Physical Disabilities
Indiana’s system of supports for the elderly and individuals of all ages with physical disabilities has been strongly biased toward institutionalization. Nursing homes provide the overwhelming majority of care for these persons. Of all elderly and persons with physical disabilities receiving funding for long term care services through the state Medicaid program in 1999, 92.1% were in nursing homes and only 7.9% received home and community-based services. Indiana has a significant over-supply of nursing home beds, with an average occupancy rate of 74%. This is one of the lowest occupancy rates in the nation, and indicates that Indiana is supporting far more institutional capacity than needed. Providing effective community-based services is essential to impacting this problem.
The Bureau of Aging and In-Home Services (BAIHS) within the Family and Social Services Administration administers funding available for in-home, community-based and protective services. This includes 15 state and federal funding sources totaling more than $131,554,000 for older adults and individuals with physical disabilities of all ages. Services are provided through a statewide network of sixteen Area Agencies on Aging (AAA). The AAA case management system serves as a single point of entry, regardless of the funding source, for applicants of long term care services.
In Indiana, all persons seeking nursing home care are screened and evaluated for community alternatives. The Indiana General Assembly enacted a Pre-Admission Screening (PAS) Program in 1983 to assure that admissions to nursing facilities are appropriate. The primary purpose of PAS (IC 12-10-12) is to assure that alternatives such as in-home and community-based services have been explored. One eligibility screen is used for in-home services and for nursing home placement. Upon completion of the eligibility screen, the eligible individual may elect from an array of services provided in their own home and community or may select to enter a long-term health care facility.
The Pre-Admission Screening/Resident Review (PAS/RR) Program was enacted into federal law in 1987. While no longer mandated annually for all persons within a major mental health or developmental disability facility, Indiana continues to conduct these screenings to assure that persons reside in a setting where their needs can best be met.
The Statewide IN-Home Services Program is available in all of Indiana’s 92 counties. This program was established in 1992 and brings together funding from nine funding streams: Community and Home Options to Institutional Care for Elderly and Individuals with Disabilities (CHOICE) Program, Title III of the Older Americans Act, Social Services Block Grant, Older Hoosier Account, United States Department of Agriculture (meals), three Medicaid Waivers, and local funding to provide a comprehensive, coordinated alternative to institutional placement.
The IN-Home Services Program offers an array of services to provide older persons and persons with disabilities of all ages with the option to live independently in their own homes and communities. Services include adult day care, attendant care, homemaker, home health services and supplies, home delivered meals, habilitation, adaptive aides and devices, home repair and modifications, respite care, therapies, transportation and other services to assist older adults and persons with disabilities in maintaining their independence.
In addition to the IN-Home Services Program, a range of community-based services are available including: congregate meals, information and referral, preventive health services, senior employment, Room and Board Assistance (RBA), Assistance to Residents in County Homes (ARCH), and other locally based programs.
Protective services include Adult Protective Services, Ombudsman--both Long-Term Care Ombudsman and Developmental Disabilities Ombudsman, Adult Guardianship, Money Management, Representative Payee, and Legal services. All services are available on a statewide basis and can be accessed through the sixteen AAAs with two exceptions:
Consumer, family, advocate and provider testimony has outlined several critical areas of concern:
Consumers note that assistance in finding resources in the community, if you are not already receiving services or eligible for an open waiver slot, are very limited. Some individuals who have called requesting information have simply been told they are not eligible for waiver services, or that waiver services are currently not available. There are disparities across the state in how well consumers are able to obtain access to information.
Other states have shown that evolving to a more community-based system can indeed reduce overall costs of care, but a major systems change is required to accomplish this. Testimony and input strongly indicate that such change must be undertaken in Indiana.
Indiana has many strengths that can be built upon in the process of re-focusing systems toward community integration. The Statewide IN-home Services program provides a model for flexibility and responsiveness to consumer input that has received recognition for its design by the National Governors' Association (NGA). This system of providing a local level of administration and a single entry point for clients to access multiple funding streams has been effective in tailoring supports to meet individuals’ needs within the context of the local environment. The case management system currently in place works well for assessment and for arranging services to the extent that funding for the appropriate services is available.
In addition, Indiana has taken important steps to assure that more choices will be available for individuals in the future. The applications for new waiver programs for adult day care, foster care, and assisted living have been submitted and are currently under review by the federal Health Care Financing Administration (HCFA). When approved by HCFA and accompanied by the necessary appropriation of state funds, they will provide additional service options, including important alternative housing-plus-services arrangements. These arrangements provide a sense of home and yet can also provide the supportive services necessary to meet individuals’ needs as they age and as impairment levels increase. Individuals can age in place rather than suffer the trauma of multiple transfers as their abilities decline. Expansion of adult day care programs will also begin to address caregiver support needs. It will enable informal care providers to sustain their efforts over longer periods of time and allow individuals to remain within their families when they choose to do so.
Many of Indiana’s state agencies have shown that they have the expertise and knowledge to make creative use of funding sources other than state funds. FSSA and other agencies have shown a solid awareness of available federal grants and programs, and aggressively pursue opportunities to bring in additional dollars from these sources. The Indiana Long Term Care Insurance Program, one of only four such programs in the nation, is one such example of forward-thinking and taking advantage of opportunities provided by foundations and the federal government. Indiana has also begun making better use of federal matching funds that are available through the TANF program to support home and community-based care for families of children with disabilities. These efforts provide a good base for expansion.
Indiana can learn from the experience of other states and other programs, while designing a service delivery system. Several programs are briefly described below which have been identified as meriting further analysis as part of the community integration planning process.
Indiana can build on experience of other states in using different models for consumer-directed personal care. The Employer of Record model used in Minnesota uses provider agencies as fiscal agents and allows a menu of consumer-directed options, geared to the comfort level of the individual receiving services. It offers an option which would allow individuals to have a choice of fiscal agent, rather than relying solely on Area Agencies on Aging to develop the capacity to meet the needs of all consumers who might desire these services. California’s In-Home Supportive Services Program is the oldest and largest consumer-directed care program, and can provide valuable lessons in the types of support needed by diverse consumers as well as models for assuring adequate working conditions for workers.
There are several successful models of integration for acute and long-term care services, providing Medicare and Medicaid services through a capitated provider. The Programs for All-inclusive Care for the Elderly (PACE) program is possibly the most widely known of these. Wisconsin’s Partnership Program, particularly the Eau Claire site that is sponsored by an Independent Living Center and serves a largely rural area, provides an attractive model for Indiana to consider replicating.
Wisconsin’s Community Care Organizations (CCO) program provides a model of service delivery for HCBS services, that incorporates significant flexibility and ease of access. Indiana’s own CHOICE program also offers a model that should be used for examining ways to make the Medicaid Waiver in-home services more flexible.
Ohio has a unique system for providing low-income housing to individuals who have disabilities. Nonprofit housing corporations whose sole purpose is to assure that affordable housing will continue to be available for this purpose own small group houses. The individuals and their families, with the assistance of county staff, then choose the service providers who provide the supportive services needed, through an RFP process.
Other states have experience in working with service providers, particularly nursing home providers, to re-vision their long term care systems to reduce reliance on institutional care and downsize the nursing home industry while minimizing trauma to consumers. Options developed by a recent Long Term Care Task Force in Minnesota could be built upon to facilitate this process for Indiana.
Indiana can use the experience of states such as Washington and Oregon to determine the feasibility of curtailing overall long-range growth in expenditures for long term care by shifting from an institutional to a more community-based model. The efforts of those states required some up-front investment to change the system, and can provide models for the size of investment needed and how to make this investment pay off in the most efficient manner. These states and others such as Wisconsin, Pennsylvania and Minnesota created administrative structures to support a balanced system. This has allowed them to follow a consistent policy of moving dollars from institutional to community-based care over a sustained period of time, in an area where changes may take a decade or more to yield the desired results.