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DDRS Home > Comprehensive Plan for Community Integration and Support of Persons with Disabilities Comprehensive Plan for Community Integration and Support of Persons with Disabilities

I. Introduction

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:

  1. Persons with disabilities, their families and advocates will be included in plan development
  2. Community integration will replace unnecessary institutionalization
  3. Consumer choice and self-determination will be promoted and supported

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:

  • Staff from FSSA programs gathered information on the current system of supports and services for persons with disabilities and previous FSSA planning efforts. For brevity, these extensive documents are not attached, but are available from FSSA or at FSSA's website (http://www.fssa.state.in.us/) as:
    • "Indiana Community Integration Planning Process"
    • "Basic Review of FSSA Programs and Community Integration"
    • "Olmstead Data Collection Tool: Division of DDARS"
    • "Olmstead Data Collection Tool: Division of Mental Health"
    • "Olmstead Data Collection Tool: Medicaid (Aged, Blind and Disabled)"
    • "BAIHS: Data Requested for Olmstead Review and Plan"
  • Issues and concerns regarding the current system were identified by consumers, service providers, advocates and family members of consumers at three public meetings in different locations throughout the state in November 2000.
  • This material was consolidated and used to develop initial "status reports" that also included some preliminary recommendations. These reports were presented to the three subcommittees in January 2001. These reports are also on the FSSA website as "FSSA Programs and Community Integration: A Status Report". The meetings set the stage for additional input from subcommittee members.
  • During the months of January and February 2001, focus groups and individual and small group interviews were conducted with consumers and advocates as well as service providers and agency staff. This information provided us a clearer picture of the needs and barriers that consumers experience in the current system. We also learned what is currently working well for consumers. The input from these important sessions is contained in Appendix A (Consumer Needs as Reported to FSSA Consultants Through Interviews, Focus Groups and Public Meetings) and Appendix B (Provider Identified Needs and Barriers).
  • This "Comprehensive Plan for Community Integration and Support of Persons with Disabilities--Draft" incorporates what we have heard from all the stakeholders in the process to date. It provides an overview of where we are and the broad outlines for where we want to head in the future. We are presenting this draft plan across Indiana in a series of twelve public meetings to make sure all Hoosiers who want to can participate. (See Appendix C)

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:

  1. Introduction: This tells why and how we are doing this plan.
  2. Major policy directions: These major guidelines are the "heart" of the plan. They define common approaches to solving problems affecting all persons with disabilities.

    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:

  • Incorporating the feedback from these 12 statewide public meetings, as well as any additional ideas and suggestions that the public or other interested parties may want to make into more detailed recommendations. Letters may be mailed to the Secretary's Office or comments emailed to the FSSA website. Comments on the draft plan are due to FSSA by April 27, 2001. These recommendations will be reviewed by the subcommittees on May 2-4.
  • Using comments and feedback to finalize the recommendations that will be contained in the plan to be presented to Governor O’Bannon in June 2001.
  • Implementing an ongoing process of coordination and oversight that will continue the collaborative efforts begun by this planning effort. This will include an expanded list of partners. This ongoing focus is necessary in order to continue to progress toward our goals.

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.

Options:

  • Reduce Indiana's reliance on institutional care by working with providers to develop ways of de-emphasizing nursing home care and reducing the population of individuals served in state operated facilities.
  • Advance administrative systems and policies that improve the State's ability to use any savings from decreases in expenditures for institutional care (whether for state-operated facilities or for nursing homes) for the expansion of community-based care.
  • Make available a full range of effective traditional and non-traditional community options and supports through waiver mechanisms.
  • Cultivate new and creative options for community-based services and supports.

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.

Options:

  • Develop the capacity to provide information and referral to all consumers, through individuals with sufficient training and experience to appropriately identify and assess the needs of the diverse population who require services. Options need to be explained thoroughly to consumers and their families, and all alternative sources of funding need to be explored.
  • Strengthen the system of case management. The various roles of case managers need to be clearly articulated.
  • Make assistance uniformly available in all geographic areas.
  • Centralize information about service quality and availability within FSSA and make information widely available to consumers and providers.

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.

Options:

  • Develop methods for families and advocates to actively participate in quality assurance systems.
  • Strengthen programs providing education, training and respite services for family caregivers.

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.

Options:

  • Effect ombudsman and consumer advocacy programs for all in need.
  • Make available the Adult Guardianship program in all counties, so those individuals unable to speak for themselves and lacking involved families will have someone to speak for them.
  • Ensure that conflicts of interest do not exist for case managers (for example, where agencies may provide both case management and other supportive services).
  • Assure oversight of and accountability for all quality assurance activities conducted for institutional and community-based care and services.

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.

Options:

  • Recognize clearly the role of affordable housing as the single biggest need for individuals who are at risk of institutionalization. Strengthen linkages between "service" agencies and organizations responsible for housing.
  • Make transportation and employment opportunities more widely available. Agencies responsible for these areas must work closely with providers of supportive services.
  • Develop the infrastructure needed for new Home and Community Based Services (HCBS) waiver programs: recruitment of adult foster care providers; education for caregivers on adult day care as an option; and enhancement of the policies, procedures and staff needed for monitoring quality in assisted living facilities.
  • Address transportation, employment and housing needs of all persons with disabilities through a multi-agency focus led by FSSA and the Governor’s Office.

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.

Options:

  • Provide means for training and certification of persons providing direct services.

Appendix A

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.

  1. Consumers need transportation that is affordable, accessible in all areas of the state and available 24 hours a day, 7 days a week.
    • Limited number of providers (reimbursement rates were cut so drastically)
    • No bus service and connective services in some areas
    • On time and dependable
    • Scheduling needs to be flexible
    • Rural areas often find consumers with little, if any, choice of providers.
    • Limited service area, making it difficult to get to specialists, etc.
    • Too expensive to pay for transportation to a job that pays $7 an hour.
    • Limited number of providers who have wheelchair- accessible services.
    • Consumer choice limited by transportation
  2. Consumers need housing options that are affordable, accessible and available immediately.
    • Few, if any, housing options are available in many areas of the state especially rural areas.
    • Housing choices needs to meet consumer’s individual needs such as mental health, etc.
    • Housing needs to be subsidized.
    • Less money going to nursing homes
    • Waiting lists for housing are extremely long and move slowly.
    • Housing is in a "gridlock"
    • There isn’t a real continuum of housing options.
    • Often the only choice available is senior housing or a NH.
    • There are no choices or options available to persons with dual disorders.
    • Consumers should have the opportunity to start building equity by owning their own homes.
    • Money needs to follow individuals not institutions.
  3. Consumers need the services of direct care employees who are qualified and trained to support people in the community.
    • Extreme shortage of paraprofessionals/ caregivers.
    • Consumers need a choice in their caregivers
    • Current waiver rates are $7 an hour for paraprofessional. Mc Donald’s pays up to $10 an hour.
    • Many home-care agencies can no longer afford to take a loss, so they have stopped providing waiver services.
    • High turnover of direct care employees.
    • Need continuity of providers.
    • The quality of care being provided is low due to the lack of knowledge and training provided to employees.
    • Opportunity and ability to pay family members or neighbors for being caregivers.
    • Not enough respite care.
    • AAA’s need to do better job of monitoring services provided.
  4. Consumers need an increase in the number of community support services reimbursed by Medicaid.
    • Reimbursement rates are too low so the number of providers is down.
    • The waiting lists are too long.
    • Medicaid funds providers and institutions not community services.
    • There are a number of persons who could be eligible for services who do not know about the program and benefits.
    • System is too complex and not flexible.
  5. Consumers need to be informed and educated so they can make choices that effect the direction of their care.
    • There are few options for services.
    • Funding doesn’t follow the individual, it follows services.
    • There are a number of persons who could be eligible for services who do not know about the programs and benefits.
    • State funding needs to be more flexible.
  6. Consumers need a more effective, accountable single point of entry into the system so that they can choose their preferred services at the time of assessment when they begin to need services, not when it’s already too late to do something about it.
    • Pre-admission screening needs to be the first step.
    • Case Managers need to be available and involved during this first step.
    • Consumers need to be involved in the decision making process.
    • A wider array of options and more services need to be available throughout the state.
    • Not enough financial incentives for community options.
  7. Consumers need access to more trained and qualified case managers that have the authority to make decisions based upon the stated needs and desires of the client.
    • Case Managers do not have knowledge of all services available in a geographic area.
    • Case Managers lack the training and education needed to do their job. They are often entry- level and under- qualified.
    • Case Managers are overloaded with clients.
    • There is a high turnover of Case Managers.
    • Services and competency are uneven.
  8. Consumers need a Quality Assurance and Monitoring system that has a clear set of standards and is accountable to the community and disabled persons
    • Clients who make a complaint are worried about retaliation or abuse.
    • The system evaluates itself.
    • Increase money and objectivity and authority of ombudsmen.
    • Current surveys of licensed agencies are process oriented.
    • Consumer service line representatives are not knowledgeable.
    • Intervention needs to occur before a crisis, not as a result of a crisis.
    • There needs to be clear standards and criteria.
    • Quicker response time after a complaint is needed.
    • Avoid isolation of people and programs.
    • State Medicaid agency isn’t flexible when it does audit.
    • Local politics interfere with Adult Protective services.
    • No coordination between Protection & Advocacy, Adult Protection and Ombudsman.
  9. Consumers need access to employment opportunities. They need to be supported in their employment choices.
    • People are afraid of losing other benefits if they are employed.
    • There are few options or choices of employment available.
    • Supported employment is needed i.e. transportation, adaptations, childcare, etc.
    • Vocational Rehabilitation Programs do work but they need more funding to broaden their services.
  10. Consumers need a system in place that will get information about programs and services to them, their families and communities in a reliable and timely manner.
    • Many families are unaware of the options and choices for services.
    • There needs to be an investment in family support and early intervention.
    • Information needs to be in various mediums to ensure that all persons have access.
    • Gatekeeper system doesn’t work for people in the community.
    • Consumers get the run around.
  11. Consumers need an accountable state action plan that addresses their unmet needs
    • These are real people who have real needs for services.
    • People need more money now – this week!
    • Waiting lists are too long – services need to be available immediately!
    • If you don’t "fit" you don’t get help.
    • FSSA doesn’t listen to consumers.
    • System is complex, divided and competing with each other.
    • Unevenness across the system.
    • Inconsistent eligibility criteria.
    • Providers of services funded by the state are not accountable.
    • Sense of urgency!
  12. Consumers need to be assured of a safe system that responds to their complaints and protects their rights.
    • No coordination between programs.
    • System is overwhelmed with little real authority.
    • Largely left up to providers themselves.
    • Not uniform
    • Only react to a crisis
    • System does not monitor complaints or take action on them.

Appendix B

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.

  1. Transportation
    • More transportation needs to be available between Adult Day Care and work.
  2. Housing options
    • Need much more choice in housing, whether assisted or low income.
    • Reduce the number of nursing home beds for low occupancy homes.
    • Move people from nursing home to more suitable living situations.
    • Make assisted living more affordable for a wider range of incomes.
    • Waiver slots are not available, so some families make do as long as possible, rather than put family members in nursing homes.
    • Need assisted living with a special care option, otherwise person may need to move again.
    • In some areas of the state, there are no other options besides nursing homes for the developmentally disabled population.
  3. Direct care employees
    • Need to rewrite attendant jobs to expand work done and to get it reimbursed.
    • Need more training for home health aides and attendant care.
    • Training standards aren't being enforced now and better standards are needed.
  4. Medicaid reimbursement
    • For Medicaid-funded services, people must spend down into poverty, including spouses.
    • Medicaid has an institutionalized bias for services; need better integration of acute and long-term care services and reimbursement.
  5. Consumer choice of service options
    • Can't make informed choices if the choices don't exist.
    • Need services for clients with elderly parents who can no longer care for them.
    • Pre-admission screening may identify needs and appropriate community services, but if there are no services they go on a waiting list - and the lists are long.
    • Huge waiting lists. Even those who do receive CHOICE or waivers services are having trouble finding service providers.
    • More consumer-directed care could be encouraged and supported, as there may be an extended family member who could help.
    • On the other hand, the best placement for an individual is not always their family. The housing or care may be inadequate, the individual may be isolated or neglected.
    • The waiting lists don't accurately reflect the need for community services, as some AAA’s aren't even taking names anymore.
    • Complaint heard is, " I don't belong here, (in nursing home), family put me here and I don't want to be here."
    • The infrastructure for providing a variety of choices for the Developmentally Disabled is "in terrible shape."
    • Consumers don't want programs, they want services.
    • Need more resources in money management programs for clients.
  6. Single point of entry
    • Young adults with disabilities have no one entry point into service system.
    • Good concept, but is hard to recruit and train people in all the services available.
  7. Case managers
    • People who go into nursing homes get no case management services; no one is responsible to help them get out and find other community-based services
    • Ombudsman system "grossly out of whack." Nationally have 2000-2500 nursing home beds per ombudsman; IN is at 6000 beds per ombudsman. Need more FTEs to do the job.
  8. Quality assurance and monitoring system
    • State doesn’t hold AAA’s accountable to deliver high quality, consistent service
    • Indiana system too paternal, does a poor job of empowering people with DD.
    • Need to measure client satisfaction better.
    • Providers rate case managers and case manager rate providers; people need a source outside of the agency that authorizes their care to do quality evaluations.
    • Higher reimbursement for nursing homes does not necessarily equal high quality services.
  9. Consumer information
    • There's a Catch-22 for home care providers. Many consumers aren't aware there are community services, yet if they advertised they would be creating false hopes, because of the waiting lists.
    • Need for consumer education on adult day care for it to work

State action plan needed now (Barriers caused by system)

  • State doesn't have a coherent philosophy on how to serve people with developmental disabilities.
  • State has invested in two different systems: CHOICE and Medicaid waivers; system very complicated to access
  • Waiver providers have contracts with the State, CHOICE providers have contracts with the AAA’s.
  • State doesn't have a good handle on how many people could be moved from nursing homes back into the community.
  • Indiana is 48th most restrictive in its criteria for disability.
  • Need more guardians for people with development disabilities; State Guardianship Program is for the indigent only.
  • Indiana has lower need clients in nursing homes than other states.
  • Licensure for assisted living will be in place soon, but the infrastructure isn't in place yet for monitoring these facilities.
  • State regulatory systems need to be strong enough to apply sanctions in nursing homes.
  • Nurse practice act is a barrier – need more authority to delegate to direct care workers.
  • State ineffective in promoting change, i.e. got approval for 10,000 new waiver slots, but didn’t get Legislative authorization for funding.
  • Have lobbied for years for raise in provider reimbursement rates for CHOICE.
  • Difficult to draw line between homemaker and home health services; difficult for agency, provider, and client. Need flexibility for home health aides to provide all services needed rather than have two different workers schedule visit in same day.
  • A lot of the cost in the system is regulatory.
  • The standards for abuse under the Adult Protective Services are too restrictive.
  • Nursing home placement is essentially the only option for the indigent, due to lack of funding and waiting lists for alternative services.

Complaint system

  • The Complaint Investigation process through the Department of Health is inadequate. There is no appeal process if the complainant doesn't like the result
  • Conflict of interest when same person is ombudsman and case manager. Many AAA’s hire one person to do both jobs (1/2 FTE for each job).
  • Consumers are struggling as advocates to get known and heard.
  • Ombudsman system isn't working for home care services. The service is mandated by legislation but has not been funded.

Appendix C

Services for Adults with Severe Mental Illness

System Summary

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.

Medicaid

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.

Property Taxes

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.

Financial Incentives

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.

Accountability

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.

  1. Indiana’s system of services for people with serious mental illness is almost completely reliant on Community Mental Health Centers. They control assessment, enrollment, management, service delivery and state hospital access. They are the safety net. Almost all public funds for people with serious mental illnesses are received by or otherwise controlled by CMHCs. The presence or absence of innovation, best practices, consumer involvement, and comprehensive quality services seems to be up to the individual CMHC.
  2. The under funding of the Hoosier Assurance Plan has had significant consequences for the service system. Intended to use some managed care principles, it operates very much like a grant program. Since payments are limited by appropriations, the system is seen to be driven by Medicaid funding. If Medicaid covers the service, it will be provided. Full funding of HAP would be a tremendous help for developing community services and for continuing to address the problems and needs identified above. It would make innovation easier.
  3. There are significant barriers to any new organization that wants to provide services to people with serious mental illnesses. Managed Care Providers control the funds. A new organization must either become an MCP and be responsible for the full continuum of services, or receive funding from an MCP. Since MCPs are under financial stress for serving people with SMI, the reallocation of resources to new and innovative programs is unlikely.
  4. Consumers have little control over the services they receive or the funding of the services. If there is more than one MCP available to them they have a choice of MCP once a year. Advocates report that consumer choice and active participation in service planning needs to be strengthened. Stakeholders understand that there are some limits to consumer choice, such as when a person is experiencing a severe illness and ignores the need for treatment, or when no other services are available in the area. However, choice is seen as very important for consumer recovery and quality services. Choice of provider organization, not just a choice of staff within an organization, is important to some stakeholders. Many consumers are afraid to complain because they fear retaliation. MCPs have control over funding and services that consumers need.
  5. Despite the best intentions of the people in the delivery system, the incentives seem to favor the status quo. There is little accountability to the consumers or the community. There is little incentive to innovate or to develop new "best practice" based programs. There is little incentive to identify and serve people who are not eligible for Medicaid. There is no incentive to reduce state hospital use.
  6. If the policy directions described in this report are to be met then significant improvements are needed in case management, assertive community treatment, supported employment, quality assurance, consumer choice, housing, and transportation.
  7. Many stakeholders do not think that the current system can be held accountable. Indiana has shifted the responsibility for and cost of services to people with serious mental illness to MCPs that are, with one exception, operated by CMHCs. These are not-for-profit organizations governed by self perpetuating Boards. They have broad missions and capacity. They combine funding from a variety of sources, covering losses in one area with gains in others. While MCPs are responsible for safety net services, they are not seen by stakeholders as being accountable to anyone for their performance. The broad mission of CMHCs was seen by some as detrimental to the needs of people with serious mental illnesses. As one person put it, "CMHC’s mission and interests do not put people with SMI first." There are no alternative delivery systems in place or in development. Consumer choice and consumer protection are difficult issues in this environment and need special attention.
  8. Advocates and consumers are concerned about unevenness in the availability and quality of mental health services across the state. They also have raised concerns about a lack of housing and transportation, and the inadequate availability of Assertive Community Treatment (ACT) teams. Some advocates report inadequate employment options, including supported employment, and under resourced and poor quality case management. There is a reported lack of combined services for persons with co-occurring mental health and substance abuse disorders, even though all of the Indiana CMHCs also provide addictions treatment services. Over two thirds of the CMHCs have contracts with the Vocational Rehabilitation Services to provide supported employment services, but Assertive Community Treatment barely operates in the state.
  9. Consumers and family members voiced a variety of other concerns about a number of specific issues. They perceive a lack of monitoring standards, and long waits for therapist appointments at CMHCs. They are concerned about services that involve other agencies, including the Department of Corrections, and training for emergency response personnel. Family members and consumers are worried about a reduction in state hospital capacity without assurance of long term support for community programs. They believe there is too much variability in adult protective services to insure consumer safety, and they believe that more public education is needed to combat the stigma associated with serious mental illness.

The questions facing Indiana include:

  • How do we make it easier for alternatives and innovations to develop?
  • How can the service system be made more accountable to consumers?
  • How do we create mechanisms that reward performance?

Successes

Indiana’s system of mental health services has many strengths. Some of these include:

  • Doubling the funds available for community services by increasing federal participation through the use of Medicaid funds for psychosocial rehabilitation.
  • Encouraging and growing best practices like case management through Medicaid's rehabilitation option and thereby increasing flexibility in services to consumers in their home communities and in their homes.
  • Efforts to expand the Assertive Community Treatment (ACT) team model in order to reduce hospitalizations, and basing those efforts on sound research and with a basis in training and consultation.
  • Ongoing efforts to provide consumers with information about quality and service options, such as the Report Card and the new SHAPE program.
  • The Division's support of organizations such as Key Consumer and NAMI Indiana. In both cases, the Division supports specific programs and supports the infrastructure of the organization so that full time Executive Directors can be hired.
  • Ongoing efforts to move long term state hospital patients into the community, with a recent history of success in this endeavor. Over the last eight years, over 800 state hospital beds have closed with a commensurate increase in community services.
  • Use of psychometrically sound assessment instruments to determine what a person needs for community supports, and using that instrument for case mix computations and for measuring outcomes. Ongoing training programs support the validity and reliability of those instruments.
  • Strong and increasing University relationships, supporting the development of the Indiana Center for Mental Health Services Research. That group developed a comprehensive research project around the closing of Central State Hospital which culminated in a special issue of a peer reviewed journal and which still tracks and monitors services to patients that left Central State in 1992- 1994. That tracking study has been increased to include people recently leaving the hospitals after long term stays.
  • A wide range of quality assurance initiatives including studies on the system from the perspective of Adult Protective Services, using consumers and family members to interview providers on quality issues, and using clinical audit teams to investigate complaints and statistical outliers.
  • Widespread development of supported employment services, and a strong relationship between mental health providers and the Vocational Rehabilitation Services.
  • Developing a web based information system for monitoring and evaluating community-based services, with a system of audits to protect the reliability of information coming through that system.
  • A flexibility of approach that allows a responsiveness to market and technological issues. Small research projects, pilot service programs, and collaborative efforts with other agencies encourage innovation in the field.
  • Maintaining a positive relationship with Medicaid, sharing data, information, and initiatives. The Office of Medicaid Policy and Planning works closely with the Division of Mental Health on all issues around mental health or addictions services, sharing staff and expertise.

Best Practices

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:

  • Case management
  • Assertive community treatment
  • Psychosocial rehabilitation
  • Community alternatives for crisis care
  • Services for co-occurring substance abuse and mental illness
  • Consumer self help and advocacy

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.

Options

  1. Add assertive community treatment as a required service under HAP. This is a best practice that should be provided.
  2. Ensure that supported employment is available for all persons with serious mental illnesses who might benefit.
  3. Open up the delivery system to non-CMHCs, for programs targeted to people with serious mental illness. Allow both HAP and Medicaid funds to be used, and provide access to state hospitals. Develop mechanisms for risk sharing with the state, so those new programs have a chance to develop. Encourage consumer directed services.
  4. Expand choice by allowing consumers to direct the funds that are available for their services.
  5. Continue and improve efforts to assess performance and inform consumers, such as the Report Card and the SHAPE project.
  6. Encourage and promote the use of the Consumer Service Line, as a means of providing a neutral place for consumers to seek assistance.
  7. Collect and combine information from the consumer line, ombudsman and advocates in order to get a broader view of consumer issues and concerns. Disseminate the information broadly.
  8. Continue to support advocacy and ombudsman services.
  9. Address housing, and transportation needs through cross-disability, multi-agency approaches led by FSSA.
  10. Invest in improving case management. Reduce turnover and provide better training in areas such as support options and community resources.

Appendix D

Services for Persons with Developmental Disabilities

System Summary

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:

  • Case management services including arrangement of the provision of services, service coordination, crisis intervention, case planning, follow along to ensure quality improvement.
  • Case management assessment including assessment and referral, reassessment when necessary.
  • Personal assistance/attendant care.
  • Respite care.
  • Adult day care.
  • Residential-based habilitation.
  • Day habilitation which may include provision of meals and snacks, personal assistance with daily living skills and supervision, medical care, transportation, counseling.
  • Prevocational services.
  • Supported employment.
  • Environmental modifications such as lifts or ramps, grab bars, widened doors.
  • Assistive technology.
  • Personal emergency response system.
  • Physical therapy.
  • Occupational therapy.
  • Speech/language therapy.
  • Transportation to and from appointments/outside activities in the plan of care for each recipient.

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:

  • Confusion regarding the number of individuals waiting for services.
  • Uncertainty about eligibility for services.
  • Confusion regarding how the waiting lists are managed.
  • Frustration about lack of information about the number of waiver slots available.
  • Reasons for delays in receiving services.
  • Inconsistent information regarding the waiting list procedures, services available, support options, and determinations of consumer needs.
  • Lack of choice of providers, services, and support options.
  • Belief that FSSA is not listening to their concerns.
  • Lack of information from FSSA regarding plans to move individuals from institutions to community settings.
  • Lack of FSSA implementation of these plans.
  • Complexity of the system.

Additional consumer, advocate and provider concerns are:

  • Monitoring of quality and safety.
  • Distrust that their needs and rights are being recognized
  • High turnover of direct care staff and shortage of qualified and trained paraprofessionals and caregivers.
  • Lack of self-advocacy.
  • Limited capacity of the system to respond to or prevent a crisis.
  • Apparent limited tracking of incidents and complaints across programs for trends and gaps in the system.
  • Lack of dissemination of information about service quality to consumers.
  • Uncertainty regarding who is responsible and accountable for assuring that the system is improving.
  • Financial resources do not appear to be sufficient to meet consumer needs for community-based services and supports.
  • Financial incentives do not exist to support the transition of current providers to community-based services.
  • Funding does not usually follow the individual.
  • Lack of affordable, accessible and available housing options, especially in rural areas.
  • Limited non-traditional housing options.
  • Lack of flexible and dependable transportation, especially in rural areas.

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.

Successes

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.

Best Practices

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.

Policy Options

Indiana could:

  1. Revise Indiana's system of financial incentives and policies which favor institutional providers in favor of policies and incentives for community-based services. This policy direction and strategy should include a resolve to not use institutions in the long run as safety nets for individuals that do not have other options.
  2. Define "most integrated settings" to reflect a funding priority that meets the individual needs of the consumer and places the needed supports and services on equal financial footing with existing more restrictive programs.
  3. Recognize that changes to the system will take the long term efforts and the focus of multiple state, local and private agencies including those that provide generic community services such as housing, supported employment, transportation, workforce training and medical care. The direction that is ultimately adopted by the state should be widely communicated and monitored by a single authority that has responsibility for evaluating progress against clearly defined outcomes and benchmarks. This authority should incorporate the recommendations of previous planning efforts, if appropriate, and be diligent in seeking direction from consumers, their families and advocates as well as a wide range of community providers.
  4. Through FSSA, identify, assess and plan for the movement of developmentally disabled persons who currently reside in nursing homes to less restrictive community-based settings that meet their needs.
  5. Assure all consumers that there is consistency and fairness in the process of accessing community services and supports throughout all its programs including the 16 AAAs.
  6. Develop a specific initiative to address the cultural barriers to outreach and access to services by minority populations. This initiative should include technical assistance and training for the staff of the AAAs, case managers and community providers.
  7. Respond to the desires of persons currently living in ICFs/MR who seek opportunities to live in smaller, community-based houses and apartments.
  8. Revise FSSA’s waiting list process so that it is better able to understand the specific needs of persons waiting for community-based services as well as identifying people who may need services but are not recognized as waiting for services.
  9. Recognize the long-term and detrimental effects of the direct-support staffing crisis on individuals and families and the ability of the state to develop new services; and make it a priority to create a coordinated workforce development initiative with the focus of improving wages, providing education and training, enhancing recruitment, and reducing turnover.
  10. Improve communication between agencies and individuals in the system when reporting abuse, neglect and other forms of maltreatment. Overall system accountability should be located at a central location that would be designed to systematically respond to concerns voiced by stakeholders regarding maltreatment reporting and follow-up. This central authority would also have the responsibility to establish and monitor standards for response to incidents and complaints. It would also be responsible for tracking and conducting trend analysis of all incidents and complaints and reporting to consumers when needed.
  11. Pay particular attention to consumer-to-consumer violence and ensure that all individuals have the freedom to choose with whom they live.
  12. Begin to collect information about services that are being underutilized and make necessary modifications.
  13. Create a mechanism to adequately support people whose needs change over time due to their age and/or disability. A particular focus of FSSA should be planning for those persons with developmental disabilities who currently live with aging parents.
  14. Prioritize funding to support families by improving access to respite and crisis supports and care and other personal care supports.
  15. Continue its efforts to train case managers and staff on the facilitation of client-centered care and consumer choice.
  16. Ensure that consumer and families are active and regular participants in any quality assurance program. All quality assurance and monitoring should integrate health and safety monitoring, quality of life assessments and quality improvement assistance.
  17. Train and manage state staff and service providers to respect the people they serve and support. FSSA staff and service providers should be held accountable for exhibiting this respect by assuring that individuals have control over their basic choices.
  18. Define common standards and expectations of performance and outcomes for all case management services that are provided by FSSA staff or independent case managers. Consumers should have an expectation that their case manager has the skills and knowledge necessary to contribute to their quality of life and expectations for service outcomes.
  19. Assure that consumer-directed supports are available to all consumers and that the information, technical assistance and training are provided to all individuals and their families on how to use consumer-directed community-supports.
  20. Work with all relevant state public and private agencies and the federal government to increase access to affordable housing options for individuals who decide to rent or own their own home.
  21. Increase the availability of supported community employment opportunities to all individuals who want to work.

Appendix E

Services for the Elderly and Persons With Physical Disabilities

System Summary

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:

  • The Adult Guardianship program is provided in 23 counties through six organizations (four AAAs and two Community Mental Health Associations).
  • The Adult Protective Services Program is available statewide through 18 Prosecuting Attorney Offices.

Consumer, family, advocate and provider testimony has outlined several critical areas of concern:

  1. Indiana needs a unified vision across state agencies to support community integration. While the process of articulating this vision has begun with the governor's executive order, the system currently fragments issues into programmatic boundaries, such as social services, health, transportation, etc. Responsibility for funding, arranging for and monitoring long-term care programs is scattered throughout several state agencies and among divisions within agencies. Budgets focused on population groups, funding limitations and priorities as well as focus on short-term solutions all serve as barriers to the agencies’ ability to increase spending for home and community based care. This perpetuates the cycle of unnecessary institutionalization.
  2. Funding for community-based services is currently very limited, and the state and local funding currently being used to provide community-based services can be more effectively targeted to maximize federal dollars available for these services. Indiana has approval for 12,500 Aged and Disabled HCBS waiver slots from HCFA, but currently only funds 2,500 individuals.
  3. The current system exhibits a lack of focus on consumer choice and control.
    • Medicaid funding is immediately available for nursing home care, while individuals may be on waiting lists for Medicaid-supported home care services for years. Consumers saw this bias as significantly reducing their ability to choose an environment conducive to their needs and abilities.
    • For persons already being served in the community, programs are not designed to maximize consumer choice. Small pilot programs for consumer-directed personal assistance services have been established under the CHOICE program but Indiana has been slow to develop and expand this option.
    • Medicaid waiver services rely on controlling expenses through rigid service and eligibility definitions, which results in inefficient use of resources and frustration for the consumer.
    • Experience and expertise in providing home care options through more flexible mechanisms which have proved successful in the CHOICE program, are not used effectively as models for the Waiver programs.
    • FSSA currently lacks the infrastructure needed to promote development of and to adequately monitor new waiver programs particularly the adult foster care program. Budget requests currently working their way through the legislature are designed to begin addressing this need, and will be essential to the ability of these programs to begin offering a viable community-based alternative to institutional care.
    • Many individuals with disabling conditions are unable to speak for themselves, and have no one other than their service providers to speak for them. Guardianship services are not consistently available throughout the state.
  4. Quality Assurance mechanisms currently in place are not adequate. Improvements are needed in all areas: licensure and certification, ongoing monitoring, system wide oversight and access to ombudsman services and complaint mechanisms.
    • The Ombudsman program is inadequately staffed to meet the needs of individuals in programs currently being served, and is not available at all for home and community-based care.
    • Newly developed waiver services such as the adult foster care and assisted living waiver programs will also require an effective quality assurance mechanism which should include access to Ombudsman services.
    • Complaint mechanisms are currently not well coordinated within the Family and Social Services Administration (FSSA), or between FSSA and the State Department of Health. Complaints are frequently not handled in a timely manner, nor are the results adequately responsive to consumers.
    • There is no appeal mechanism for complainants who are not satisfied with the complaint system’s findings, in contrast to the extensive appeal mechanisms available to providers.
    • While ongoing monitoring of the effectiveness and appropriateness of care is currently the responsibility of the case management system; it is not adequately recognized as such and funded appropriately to perform this function. Case management resources need to be expanded, to adequately perform quality monitoring functions as well as initial assessment and care planning / program administration functions.
  5. Access to in-home and community-based services through the 16 Area Agencies on Aging is provided for all individuals with disabilities regardless of age. Advocates state that the system serves most consumers well, particularly older persons. However, these advocates report that there is inconsistency among the agencies in their ability to appropriately serve other consumers in need of long-term care services. Inadequate funding for case management services and low salary levels have created challenges to the agencies in their ability to provide a high quality of service. Some agencies have experienced high turnover of staff as well as an inability to hire people with appropriate levels of experience. It has been a challenge to hire the diversity of experience that is needed to adequately serve a diverse population.

    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.

Successes

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.

Best Practices

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.

  1. Client-directed Personal Assistance Services Models

    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.

  2. Integrated Acute and Long Term Care

    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.

  3. Models of Flexibility for Medicaid HCBS Waiver Services

    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.

  4. Nonprofit Housing Corporations for Disabled Individuals

    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.

  5. Re-Visioning the Role of Nursing Homes in the Long Term Care System

    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.

  6. Other States’ Experience in Balancing Institutional and Community-Based Services

    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.

Specific Options:

Indiana could:

  1. Establish a clear philosophy of moving dollars from institutional to community-based services, and align administrative structures to facilitate this. Home care waiver services should be adequately expanded to allow individuals to choose care in the setting they prefer.
  2. Establish specific goals for increases in the number of individuals to be served by Medicaid HCBS waiver services paralleling similar goals for reduction in the numbers of individuals served in institutions. Use experiences of other states to establish a ratio of community care waiver slots needed per institutional bed to move the service delivery system toward community-based care.
  3. Expand options for consumer-directed personal assistance services. Make this choice available for clients of HCBS waiver services as well as CHOICE clients. Develop options that will allow consumers to choose the level of consumer direction with which they are comfortable, rather than an all-or-nothing approach.
  4. Adequately enforce standards in information and referral, needs assessment and wait list policies to resolve disparities across the state in how well consumers are able to obtain access to information.
  5. Establish a nursing home transition program to facilitate alternative placements for current nursing home residents who prefer to be served in the community, including outreach and assessments of current residents to determine which residents currently in nursing homes would be able to transition and would desire community placement.
  6. Augment the current pre-admission screening program to assure that no newly identified individuals with disabilities who wish to stay in the community are forced to accept nursing home placement. A uniform system should be put in place statewide to track and document the extent of this problem.
  7. Recognize volunteer efforts for the value they provide. Programs such as AARP’s Financial Counseling service should be used as models to develop other creative ways that supports can be extended and expanded through creative use of the experience and expertise of older persons and others who are in a position to offer their time and services.
  8. Foster self-advocacy, support groups and matching individuals with different disabilities to provide support and assistance to each other.
  9. Develop methods for families and advocates to actively participate in quality assurance systems.
  10. Strengthen programs providing education, training and respite services for family caregivers.
  11. Expand awareness of options, such as long term care insurance to assist individuals to prepare for their own possible long-term care needs as they age.
  12. Strengthen current complaint mechanisms both within FSSA and the State Department of Health and establish closer coordination between all licensing, certification and complaint programs.
  13. Consider the feasibility of moving all compliant mechanisms into one department to eliminate duplication and strengthen the capacity of the state to provide appropriate oversight of all programs.
  14. Expand the Ombudsman program to cover all long term care settings, both institutional and community-based, and provide adequate funding so that all individuals have appropriate access to Ombudsman services.
  15. The role of case management currently includes quality monitoring; assure sufficient funding to adequately perform this task along with all other roles. Establish and promote additional mechanisms to offer a choice of case managers through alternative agencies, not just through private sole practitioners. Assure that case managers have adequate training and support to carry out their jobs.
  16. Strengthen quality assurance and improvement activities at the State level through the recently created DDARS Quality Improvement Services staff; assure that quality of all services is monitored to the benefit of the entire agency; quality assurance and improvement activities will involve every aspect of the DDARS.
  17. Re-design the Home and Community-Based Services waivers to incorporate the flexibility currently exhibited by CHOICE program.
  18. Expand consumer-directed personal assistance options to all who prefer to receive care in this way, including developing additional choices and options for the fiscal agent role and a continuum of levels of consumer direction that can be tailored to the desires and abilities of the consumer.
  19. Once HCFA approval of the new Adult Foster Care and Assisted Living Waivers is received, provide adequate infrastructure support within FSSA to recruit providers, publicize the availability of these services and develop adequate oversight and quality assurance mechanisms.
  20. As part of the current effort to revise home care regulations, examine limitations in the Practice of Medicine Act and Nurse Practice Act that constrain personal attendant care workers from performing tasks that family members are routinely trained to perform for individuals with disabilities. Amend these laws to allow such services when the worker is properly trained.

3/28/01