State Long Term Support Systems to Promote Informed Consumer Decisions: Information Provision, Decisions Tools, and Options Counseling

Transcription

1 State Long Term Support Systems to Promote Informed Consumer Decisions: Information Provision, Decisions Tools, and Options Counseling Rosalie A. Kane, PhD Reinhard Priester, JD Robert L. Kane, MD Topics in Rebalancing State Long-Term Care Systems, Topic Paper No. 4 Submitted to the Division of Advocacy and Special Programs Centers for Medicare & Medicaid Services CMS Project Officer, Kate King Final Version Submitted, December 2007 This topic paper was prepared as one of the deliverables of the CMS-funded project, Studies of Management Approaches for the Rebalancing of State Long-Term Care Systems, led by researchers at the University of Minnesota (with collaboration from the University of California, San Francisco and the National Academy for State Health Policy) under a Master Contract between the CNAC Corporation and the Centers for Medicare & Medicaid Services (CMS) (Contract No.: , Task Order # 0003). The PI from the University of Minnesota is Rosalie A. Kane and the CNAC project manager is Elizabeth Williams. The findings and opinions are those of the authors and do not necessarily reflect the view of CMS or its employees or any of the participating States and their employees.

2 Table of Contents Table of Contents... ii Preface... iv Executive Summary... v Introduction... 1 Relevance to Rebalancing... 1 Focus... 1 Guiding Questions and Methods... 3 Conceptual Model of Decision-Making... 3 Prerequisites for an Informed Decision Coercion and Informed Decision-making Prerequisites... 4 Cognitive Status and Informed Decision-making Prerequisites... 4 Enhancing Informed Decision-Making... 4 Culturally Competent Communication... 5 Built-in Decision Assistance and Review Periods... 6 Reducing Program Delays to Minimizing Precipitous Actions... 7 Increasing System Options... 7 Modernizing Information Programs Present in all States... 8 Initiatives Developed With Grant Funds... 9 State Approaches to Information Provision and Options Counseling General Approaches Aging and Disability Resource Centers (ADRCs) Case Management Person-centered planning Consumer-directed care Case management and informed decision-making in 8 States Examples of Enhancing Informed Decision-Making in 8 States Screening and Self-Assessment Tools ARGet-Care Vermont Screen Door MinnesotaHelpInfo and Structured Decision Tool Adaptations to Information and Referral Case Management in Vermont Choices for Care Examples of Options Counseling Long-Term Care Consultation in Minnesota MyCare Vermont MyCare System Navigation Relocation Specialists Arkansas Options Counseling, Act Conclusions Appendix: Topics in Rebalancing, Supporting Informed Consumer Decisions, page ii

3 List of Tables and Figures Table 1: Grant Programs with Implications for Informed Decision-Making in Eight States... 9 Table 2: Activities of ADRCs in 8 States Table 4 Summary of Case Management for Seniors in Eight States Table 5: Initial Questions in the Minnesota Self-assessment Module Table 6: Available Modules in Minnesota Decision Tool Table 7: Self Determination in Nursing Home Transition in Pennsylvania Figure 1. Conceptual Model for Informed Consumer Decision-Making.6 List of Figures in Appendix Figure A1. Home Page for AR-GetCare. 35 Figure A2. Beginning of Self-Assessment Tool in AR-GetCare 36 Figure A3. Example of a Result from Self-Assessment Tool in AR-Get Care Figure A4. Entry to the Vermont Screen Door 38 Figure A5. Beginning of Self-Assessment Tool in Vermont Screen Door..38 Figure A6. Entry into MinnesotaHelpLine Figure A7. Beginning of Plan Profile in Minnesota Decision Tool. 40 Figure A8. Washington State Web Resources for Consumers Topics in Rebalancing, Supporting Informed Consumer Decisions, page iii

4 Preface In 2003, Congress directed the Centers for Medicare & Medicaid Services (CMS) to commission a study in up to 8 States to explore the various management techniques and programmatic features that States have put in place to rebalance their Medicaid long-term care (LTC) systems and their investments in long-term support services towards community care. In October 2004, CMS accordingly commissioned this study to examine that topic. The States of Arkansas, Florida, Minnesota, New Mexico, Pennsylvania, Texas, Vermont, and Washington are participating in this 3-year Rebalancing Study. For the study, CMS defined rebalancing as reaching a more equitable balance between the proportion of total Medicaid long-term support expenditures used for institutional services (i.e., Nursing Facilities [NF] and Intermediate Care Facilities for the Mentally Retarded [ICFs-MR]) and those used for community-based supports under its State Plan and waiver options. CMS further clarified that a balanced LTC system offers individuals a reasonable array of balanced options, particularly adequate choices of community and institutional options. The products for the study include State-specific case studies that look qualitatively and quantitatively at each State s management approaches to rebalance their long-term care systems. The first set of those reports reviewing each States experiences up to July 2005, and an Update Report summarizing milestones for all 8 States up to July 2006 have been released. 1 Fuller follow-up studies of the 8 States are planned for release in late The other products for the study comprise a series of papers, called Topics in Rebalancing. Each Topic Paper highlights an issue of importance in State rebalancing efforts, and each draws on experiences in some or all of the 8 States in the Rebalancing Study to illustrate the issue. Other Topics Papers in this series are: State Strategies to Build and Sustain Consumer Advocacy, September 2006, State Long- Term Care Systems: Organizing for Rebalancing, December 2006, 2 3 and Managed Long- Term Care and the Rebalancing of State Long-Term Care Support Systems, December For this particular Topic Paper, State Long Term Support Systems to Promote Informed Consumer Decisions: Information Provision, Decision Tools, and Options Counseling, we drew on our original State case studies, which we supplemented from websites, other materials from the States, and selected interviews. We thank our CMS project officer, Kate King; former project officer, Dina Elani, Susan Hill, Shawn Terrell, Marybeth Ribar, and Melissa Hulbert for their thoughts and suggestions during the preparation of this paper. The findings and conclusions in the paper are those of the authors and do not necessarily reflect those of CMS or its staff, any State officials, or the advocates. We hope that this Topic Paper will stimulate discussion, and we welcome any comments or reactions. Rosalie A. Kane, Project Director kanex002@umn.edu 1 The Executive Summary, the 8 abbreviated case studies, and the Update report are available on the CMS website at as well as on and the Study director s website at Longer State reports can be found at the LTC Resource Center website. 2 State Strategies to Build and Sustain Consumer Advocacy was written by Reinhard Priester, Amy Hewitt, and Rosalie A. Kane. State Long-Term Care Systems: Organizing for Rebalancing was written by Rosalie A. Kane, Robert L. Kane, Martin Kitchener, Reinhard Priester, and Charlene Harrington. Managed Long-Term Care and the Rebalancing of State Long-Term Care Support Systems was written by Rosalie A. Kane, Reinhard Priester, and Robert L. Kane. These papers are found on the same three websites indicated in Footnote 1. Topics in Rebalancing, Supporting Informed Consumer Decisions, page iv

5 Executive Summary This Topic Paper reviewed State approaches to promoting informed consumer decisions at junctures when a specific decision about type and place of care must be made. The discussion is illustrated with examples from the eight states participating in the program of State Management Practices to Rebalance Long-Term Care Systems. It is assumed that if consumers or their agents are offered opportunities to make informed decisions at key junctures in their service planning, they will increasingly opt for home and community long-term supports rather than institutional services. Conceptual criteria for informed decisions. The paper reviews conceptual criteria for informed decision-making, which can be said to have taken place when the consumer: decides among two or more viable options, makes the choice freely and without coercion, has the cognitive capacity to make the decision, has accurate and complete information about choices and their risks and benefits, and decides after examining options in the light of personal values and preferences. State officials can query their entire systems for offering, planning, and implementing services with key questions that might indicate whether consumers in that State are assisted towards informed decision making. Such questions include: is accurate, locally relevant information easy to find for consumers, and/or for professionals and advocates who help consumers with decision making? Is consumer choice a clearly held system value well understood by consumers and professionals and embedded in training? Do consumers & their agents have access to unbiased professional assistance with decision-making? Are any target groups of consumers disadvantaged for decision assistance? Is information and counseling available in a culturally sensitive manner? Do consumers have the opportunity to make important decisions in an unrushed manner? Do consumers unable to make decisions unaided because of cognitive impairment have assistance of people who know & have personal connection to them? Will professionals tolerate consumer decisions that, in their opinion, entail taking informed risks? State mechanisms to provide information and enhance decision options. For States to enhance informed decision-making, they need systems that offer culturally competent communication, build in formal periods of decision-making and reviews of earlier decisions, reduce delays in program eligibility to minimize precipitous decisions; and provide access to neutral, informed face-to-face options counselors, including for persons with cognitive impairment and their agents. Most states consciously utilize some key program elements present in all states to improve the likelihood of informed decision-making: a) information and referral services, built into Aging programs by federal law, and often connected to broader Information and Referral (I& R) programs, such as those maintained by the United Way and that utilize a state-wide dial-in system; b) assessment and case management as a way of accessing LTSS under Medicaid; and c) mandatory preadmission screening for nursing home admissions. Further, we noted that States have utilized CMS Real Choice Systems Change Grants, in particular the Aging and Disability Resource Center grants, and the Nursing Facility Transitions Grants, but others as well, to modify the way they offer information to consumers, and to develop formal programs to help consumers make informed decisions. Topics in Rebalancing, Making Choice Operational, page v

6 When States have highly developed person-centered planning and/or consumer-directed service systems, the values of individualized consumer choice should become enshrined in the system. Even so, the ability of consumers in such systems to make informed decisions at key decision-junctures cannot be assumed unless that consumer has access to accurate information and (as needed) assistance to clarify risks and benefits and weigh the pros and cons and risks of each alternatives in the light of personal values. Forces for modernizing information and options counseling. I & R methods have changed in the last decade and will change more in the 21 st century as a result of new information technologies, including web applications, to store and retrieve information. Traditional case management approaches have likewise needed to change to take account of new service delivery models ranging from consumer-directed services, person-centered planning, the use of cash allowances, the greater use of independent providers as opposed to agency providers, and capitated managed LTSS. With all of these changes operating within a LTSS system, it is no longer reasonable to assume that a statewide case management program has the entrée to the consumers or the available knowledge and skills to assist consumers in a planned decision process without considerable re-gearing and adaptation of the systems in place. Developments in Information and Assistance. Through Aging and Disability Resource Center funding and other mechanisms, States have developed extensive web and print resources to inform consumers about options, and have made efforts to brand their materials and make them visible and to be sure that search patterns mirror the way consumers would search and content is at appropriate reading levels. Taking advantage of information technology, several States (notably Arkansas, Minnesota, and Vermont) have developed self-assessment tools that enable the consumers themselves to introduce personal information and get ideas about care plans and local resources. Washington has developed extensive information about its services in multiple languages. Minnesota has taken this effort further to develop a web-based date-driven structured decision tool, which could be used by consumers alone or by long-term care consultants to help them advise consumers. Developments in Case Management and Options Counseling. Case management, a function for screening, assessment, care planning, and monitoring, is in the process of re-invention. Terms such as long-term care consultant (Minnesota and Arkansas), options counselor (New Mexico), and systems navigators (Texas) are being used for parts of or all of the function. This new terminology reflects a strong presumption of the importance of consumer choice and is seen as a consultative rather than prescriptive activity. Texas has been explicit in asserting that consumers have the right to choose risk in their care plans, and has developed training programs for home health agencies on this issue. Special attention is being given to provision of information to persons living in institutions. Detailed training materials are available in some States to assist personnel known as relocation specialists or relocation coordinators in those functions; Pennsylvania developed particularly comprehensive training. In Pennsylvania, Area Agencies on Aging have been afforded the role of relocation functioning, but this responsibility has been accompanied by new access to nursing homes, protocols, and training. Topics in Rebalancing, Making Choice Operational, page vi

7 Legislation requiring options counseling for anyone entering Medicaid services regardless of payment source or location was enacted in Arkansas in This has paved the way for the Division of Aging and Adult Services to staff and mount a state-wide program. In the compromise to enacting the legislation, a vehicle had to be developed for current nursing home resident s to give an informed refusal to the options counseling. Some States perceive that they should offer information and counseling on choices to privately paying as well as publicly funded consumers; this is perceived as a strategy that will ultimately positively affect the public costs of care. The extent to which informed decision-making that meets the criteria actually takes place can be partly tested through questionnaires to consumers who have made recent choices of service plan or have been clients of decision advisors such studies are somewhat hard to design and none were being planned at the time of our study. Evaluation tends to be restricted so far to measuring the use of information sources. Topics in Rebalancing, Making Choice Operational, page vii

8 State Long Term Support Systems to Promote Informed Consumer Decisions: Information Provision, Decisions Tools, and Options Counseling Introduction This Topic Paper explores the strategies and mechanisms used by the eight States in the CMS National Rebalancing study to help consumers make informed decisions about long-term supportive services (LTSS). The intent is to zero in on State initiatives to support consumers making informed decisions among a variety of home-and-community based LTSS options, and informed decisions to enter or an institution. Consumer-directed and person-centered service approaches have been implemented variously across States and for different target groups within States; informed decision-making is more likely to occur within programs with this philosophy. Similarly, States that have developed a broad and varied array of community LTSS set the groundwork for consumers or their representatives to make informed decisions. This Topic Paper focuses on elements of informed decision-making and building blocks to achieve it. Relevance to Rebalancing Rebalancing has been defined quantitatively as a change in utilization and expenditures of State LTSS programs towards greater use of home and community-based care in contrast to institutional care. In the disability field and, increasingly, in the aging field, many advocates and policy leaders have looked to rebalancing statistics as markers that the system is providing the kind of services people with disabilities want in the places where they want to live, and in a way that enables them to live according to their preferences, and a life integrated with the larger community. The association between increasing informed consumer decision-making and rebalancing LTSS utilization and expenditures towards community care rests on the logic that if more prospective and actual consumers make informed decisions, institutional use will shrink and the investment in community-based LTSS will rise dramatically. Given informed decision-making, it widely believed that many fewer people would opt for the restrictions of institutional living. Focus This report discusses strategies that States have used to facilitate consumer choice, using illustrations from the 8 States in the Rebalancing research project. Of interest are both mechanisms to support an initial decision by a consumer eligible for service, and mechanisms to support additional decisions or Decision-making at the time of initial need for LTSS and at ongoing junctures are both important. Enabling informed decision-making and presenting the option of community care is important for those who already live in institutions. decision changes in service options by already-enrolled consumers, including those who might live in institutions. The original decision to enter a nursing home or other institution may have not been an informed decision and it may not have been made by the resident. Even if a resident or resident s agent made an informed decision from an array of options when he or she entered an institution, changes in the resident s health, the range of community options, or the resident s preferences now that he or she has experienced institutional care may prompt a decision to leave the institution if an opportunity for informed decision-making is presented. Similarly, one cannot infer from a consumer s plan of service that he or she was afforded information and Topics in Rebalancing, Making Choice Operational, page 1

9 opportunities to discuss and choose among a wide range of options at the outset of the plan, nor that the consumer is aware of the possibility of changing that decision. The focus of this topic paper is narrowed in the following ways: This paper focuses on state efforts to facilitate informed consumer decision-making within publicly funded or subsidized programs. We note, however, that some States have extended the efforts to encourage informed decision-making about LTSS to those who pay for those services privately. They do so because of a public obligation to make information available, and also because of a perceived relationship between facilitating informed decisions for all the State s residents and eventual lowered use and costs of publicly subsidized services in institutions. In that light, some States are considering the extent to which privately paying consumers receive information about the full range of consumer-directed options and even whether they have access to the same flexible service packages available in the State under publicly funded programs. This Topic Paper also concentrates on initial and ongoing decisions to select among different types of service providers, and different service providers within a particular type: for example, selecting among home care, assisted living, and nursing home care, on the one hand, and selecting among different kinds of home care options and arrangements, or different assisted living settings or nursing homes, on the other. Accordingly, this report does not deal with the challenges of ongoing enhancement of consumer choices and consumer feedback within consumer-centered services or personcentered systems. (A person-centered system is one that is organized around the needs, interests, and wishes of the persons receiving services, rather than around the needs of organizations that deliver services. It promotes consumer choice and independence in all elements of the consumer s daily life.) Informed consumer decision-making at defined junctures in service planning is only one of the attributes that should be seen in a personcentered system. Moreover, a person-centered system does not by itself ensure a range of State policies that encourage consumers or their representatives to make informed choices. It is still possible that a consumer is directing his or her own services still does not receive timely and accurate information to make important decisions about choosing or changing care providers or venues of services. Many States, including those in the study, have accepted the challenge of creating a wide array of reliable and consumer-friendly service options. It is axiomatic that without service options, choices are narrowed or at times even eliminated. In this paper, we emphasize the way States provide information and opportunities for choice among options that do exist rather than discuss the much broader topic of creating that array of options. For that discussion, readers are referred to the case studies of each of the 8 States. 4 Ultimately consumers and their representatives must decide whether to accept or refuse specific services, and what risks, if any, they wish to assume in their daily lives. States are working towards offering multiple good choices, though choice is often 4 The Executive Summary, the 8 abbreviated case studies, and the Update report are available on the CMS website at as well as on and the Study director s website at Longer State reports can be found at the LTC Resource Center website. Topics in Rebalancing, Making Choice Operational, page 2

10 constrained by rural geography, waiting lists for waivers and services, labor force shortages, and the like. Guiding Questions and Methods This Paper relies heavily on information gathered in State case studies conducted in 2005 and briefly updated in 2006, supplemented by a review of website and other materials and selected telephone interviews or in-person interviews at national meetings undertaken in the winter and spring of We re-examined the information we had available to us in our own case studies. These included but were not limited to: each of the Aging and Disability Resource Centers (ADRCs) funded by CMS and the Administration on Aging; any nursing facility transition programs in the State; any programs established to advise consumers or prospective consumers about service options; any case management or care coordination programs developed for particular target populations; and any legislative mandates for how options must be presented. We also reviewed State websites developed to display program option and/or to provide opportunities for self-assessment and personal planning. 5 The following general questions guided the inquiry: How and when do potential consumers learn out about various HCBS and institutional service options? Does that differ within a State by specific programs or target populations? How, if at all, do State web-based approaches assisted with informing consumers of service options? What, if any, new models have emerged for helping of consumers or their families become aware of their service options and exercise informed decisions? What if any barriers can be identified (e.g. attitudinal, logistical, financial) to getting full information to consumers? Conceptual Model of Decision-Making Prerequisites for an Informed Decision. Before it is possible to say an individual is making an informed decision on any matter, some specific criteria must be met. For an informed decision, consumers need to: have one or more options that can be considered; decide among the options freely and without coercion; be cognitively capable of understanding the information to make the decision; make decisions based on accurate information about available options with their benefits and risks; and consider the options in the light of their own needs, values and preferences. An informed decision must be: from one or more options, be made freely, be made by someone with cognitive decision-making capacity, be based on accurate information; and be based on weighing the options against one s needs, values, and preferences. These prerequisite principles have been well-established as criteria for informed consent for various medical procedures. The have not been applied as frequently to LTSS decisions but are similarly pertinent. 5 At this writing, the project is completing new case studies of each of the 8 States. The material in this Topic Paper is current as of July 2007, and will be updated in the final case studies for each state, planned to be posted in the Winter and Spring of Topics in Rebalancing, Making Choice Operational, page 3

11 Coercion and Informed Decision-making Prerequisites The first prerequisite is that informed decisions are made freely. Clearly, a decision cannot be made if threats to oneself or one s family are associated with all but one option. In choices about LTSS, such blatant coercion is highly unlikely. But coercion can be subtle, particularly because a power and information imbalance inevitably exists between the consumers and those who provide them with information and advice. Options need to be presented in a neutral manner while a consumer is considering decisions in the light of his or her values and preferences. Once the consumer has identified preferences, it is arguably then the role of professional experts to help facilitate those consumer goals. Cognitive Status and Informed Decision-making Prerequisites Some degree of cognitive ability is required for decision-making. Here we refer not to legal competence, which is a matter of adjudicated status, but the ability to understand the rudiments of the particular decision, such abilities can be tested directly by reviewing the consumer s understanding of the choice. If the person whose decisions are under consideration is cognitively impaired to the degree that he or she cannot decide (e.g. a person with profound mental retardation or with advanced Alzheimer s disease), respect for informed consumer decisionmaking would hold that choices between institutional care and community care as well as choices among community care options would then be made by legal agents such as guardians and conservators, or close family members who take on the responsibility. The criteria for an informed decision (options, lack of coercion, information about the implications of each decision, and an ability to weigh each against personal values and would remain the same, but are applied to proxy decision-maker instead of the consumer. The criteria used by the proxy decision-maker could include a substituted judgment standard, whereby. the agent applies any directives made by the consumer when he or she could make decisions and tries to imagine how the consumer would decide based on observations about what he or she enjoys, or a best interest standard, whereby the agent tries to discern what is in that consumer s best interest based on understanding of the present needs, circumstances, health condition, and sources of well-being for the consumer. In actuality, some elements of substituted judgment and best interests typically apply when an individual cannot make a choice because of cognitive limitations; in either instance procedures are needed to gather and use as much information as possible about that individual s lifelong and current preferences and interests. In keeping with the concept of person-centered care, informed decision-making is enhanced if consumers with challenged cognitive functioning have access to the assistance of people who know them personally. Cognitive inability to make a decision is not a clear-cut or easy matter to assess. For example, a person with serious mental illness may not be able to make choices during an acute delusional episode, but would be able to do so after the acute problem subsided. Similarly, an older person in an intensive care unit who is barely conscious cannot make a decision at that time, but may be able to do so when the acute crisis is over. A senior with Alzheimer s disease or some consumers with developmental disabilities may not be able to understand all the complex ramifications of a decision or be able to understand it if it is put in complex terms, but may be able to decide on important components. Enhancing Informed Decision-Making For consumers to be likely to be able to make informed decisions according to the criteria for an informed decision, States can and do develop systems informed by values, and design those Topics in Rebalancing, Making Choice Operational, page 4

12 systems to offer the information and timely assistance with decision-making needed. Figure 1 shows the range of possibilities schematically. The center box depicts the testable criteria for an informed decision to take place. The box on the lower left of the diagram side suggests questions that States can use to query their whole system as to the way it enables its consumers to achieve informed decision-making. The box on the lower right suggests some building block elements in state LTSS systems that, depending on how they are organized, can enhance informed decision-making. Culturally Competent Communication Given that health literacy is generally low for seniors and especially so for seniors who are from ethnic minority Communication strategies need to take account of health literacy problems among consumers, and the need for cultural competence in groups, who are recent strategies to provide information and assist with decisions. immigrants, and/or who are not fluent in English, materials developed to inform consumers and potential consumers need to be developed with attention to clarity, appropriateness to reading levels, and their appropriateness to specific elder communities in the State. Similarly, approaches to decision-counseling and case management also need to be applied in a culturally competent manner for the particular elders and their families who will be making the informed decisions 6 States can undertake purposeful communication strategies, including translation of materials into languages spoken by substantial groups of elders, and providing translator services for anyone who needs them. 6 The Administration on Aging (AOA), the National Institute on Aging, and the Centers for Disease Control each have projects related to health literacy. The AOA program, collaboration with CMS, includes information on health literacy and website development at Other helpful resources include a briefing paper done by the American Society on Aging that links health literacy and cultural competency at An on-line resource center is part of the California Health Literacy Initiative of the National Academy on an Aging Society at All websites were last visited on April 20, Topics in Rebalancing, Making Choice Operational, page 5

13 Figure 1: Conceptual Model for Informed Consumer Decision Making Prerequisites for an Informed Decision one or more choices ability to decide freely and without coercion cognitive capability to make the decision accurate information about the options, including likely risks & benefits of each option consideration of the options in the light of one s own values and preferences Check List of Criteria to Enhance Informed Decision-Making Is accurate, relevant information easy to find? For consumers? For professionals? Is consumer choice a clearly articulated value, understood by both consumers and professionals? Do consumers & their agents have certain access to unbiased professional assistance with decision-making? Is information & decision-assistance available in a culturally sensitive manner? Do consumers unable to make decisions unaided because of cognitive impairment have assistance of people who know & have personal connection to them? Are consumers afforded time to deliberate on important decisions? Will professionals tolerate consumer decisions that, in their opinion, entail taking informed risks? System Elements that Enhance Likelihood of Informed Decisions Fast eligibility & assessment to reduce delays in HCBS starts Decision advisors or options counselors in hospitals and post-acute care rehab settings. Regular opportunity for consumers to review service plans and change their minds. Well-functioning systems for consumer information e.g. 211 lines, I & R, and ADRCs with in-person, phone, & web access. Broad & varied array of services, including consumer-directed options that promote flexible arrangements. Case management/care coordination processes that promote rather than deter consumer choice. Well-designed & tested Web sites with clear language (including on-line selfassessment tools). Built-in Decision Assistance and Review Periods States can and do embed ways to increase the likelihood that individuals learn about their choices into the operations of their LTSS systems. Such approaches include: information provided through websites, telephone information lines, and print formats; built-in requirements for informing prospective consumers about options at the time of initial assessments; ongoing States can foster informed decisions through, information and referral systems, informational websites, telephone information lines, mandated options counseling, case management, nursing-home transition programs, and built-in regular review and decision-making for persons living in institutions. counseling about options offered by case managers or fiscal intermediaries; and required review of options at intervals. Topics in Rebalancing, Making Choice Operational, page 6

14 For those already receiving services in institutional settings, States may require that some decision counselor or advisor review options for community care with the consumer or the consumer s agent regularly, perhaps annually. Nursing Home Transition programs, such as those supported through Real Choice System Change grants have depended on some systematic approach to ensuring that individuals who would like to leave the nursing home or their agents (when applicable) have the opportunity to consider that possibility. States may also require that all those who live in State-operated regional centers for developmental disability and/or ICF/MRs receive information about choices for community care at specific intervals. When States decide to build in policies requiring formal presentation of options to consumers, they are typically concerned that the information offered is accurate and unbiased; they also balance these criteria against the perceived cost of establishing networks of decision counselors who are separate from service providers. Reducing Program Delays to Minimizing Precipitous Actions Some strategies for States to make choice operational go to the heart of the program design. These include The range of options for LTSS may be conditioned on previous decisions; premature relinquishing of community housing can complicate latter choices. Older people may be particularly vulnerable to foreclosing future decisions if their needs arise as a crisis and eligibility for community LTSS or access to information about options is a prolonged process. reducing the time periods for completion of financial and functional eligibility for the nursinghome level of long-term care under Medicaid, and, therefore, expanding the choices that are literally available to individuals whose suddenly need LTSS. System capability for quick response is important for all consumers, but perhaps particularly vital for elderly consumers requiring LTSS. In contrast to people with developmental disability whose need for LTSS may increase after their childhood years when they are largely in the care of family members and to many people with physical disabilities whose LTSS may be planned during a relatively long period of physical rehabilitation, many elders are first catapulted into the status of needing LTSS as a result of a health crisis requiring a short hospitalization and a rather short period of posthospital rehabilitation. For many seniors to be able to make informed decisions for community care, eligibility status for LTSS under Medicaid needs to be determined quickly, or else alternative funding to Medicaid means-tested programs needs to be available to bridge the period before eligibility is established. Policy-makers have noted that hospitals have incentives to implement a nursing-home referral for elderly patients. Finding a nursing home is much easier than arranging and coordinating numerous services in the community. When nursing homes are afforded presumptive eligibility for Medicaid and HCBS programs are not, the incentives towards institutions are greater. And although Medicare-certified nursing homes are accustomed to short lengths of stay geared toward the 20 days of full post-acute coverage, they are not ordinarily adept at arranging complicated discharges. Those who have a place to go will readily leave, but others may slip into long-term residency in a nursing home. An individual s range of options about LTSS is often preconditioned on earlier choices. For example, if an elder chooses to sell a house or relinquish an apartment when entering a rehabilitation or nursing home, he or she may have more difficulty in returning to the community. Increasing System Options Topics in Rebalancing, Making Choice Operational, page 7

15 A consumer cannot opt for community care if it is not on the menu of options. In some ways, the entire New Freedom Initiative is about building an infrastructure for communityservices. Such an infrastructure allows people with high levels of disability and who use public funding to decide to have community rather than institutional LTSS. First and obviously, the consumer cannot decide on community care if it is non-existent, or is available only at a price that is unaffordable for low-income people or people dependent on Medicaid subsidies. Second, the community services must offer reasonable expectation of adequacy (in terms of their intensity) and quality; otherwise consumers are given a false option and professionals and advocates are bound to be uneasy if community care is selected. Similarly, institutional services must be of a quality where they do not inspire dread and fear. Modernizing Information Programs Present in all States Various mechanisms exist in all States to enhance informed decision-making if they are deliberately used to accomplish that goal: a) Information and referral services, are built into Aging programs by federal law, and often connected to broader Information and Referral (I & R) Centers, such as those maintained by the United Way, including those that use the state-wide dial-in system through which dialing 211 reaches immediate telephone assistance staffed around the clock; 7 b) Case management, called a variety of other names (such as service coordination, counseling, resource allocation), is typically a way of accessing LTSS under Medicaid. Case management historically entailed multiple functions beyond counseling and service planning, including assessment and resource allocation. 8 Deliberate strategies are needed to ensure that the service planning function inherent in case management does indeed provide unbiased information and opportunity for informed decision-making; c) Preadmission screening for nursing home admission under Medicaid is a federal mandated function to ensure that people who primarily need help for mental illness or mental retardation are not placed unnecessarily in nursing homes, and that any such persons in nursing homes receive services to meet mental health and cognitive needs. Each these mechanisms have changed in the last decade and will change more in the 21 st century as a result of trends such as new information technologies, including web applications, to convey information; emphasis on consumer direction and person-centered planning, which leads to modifications of case management programs; changes in length of hospital stays, which influences the locus of decision-making; and generally changed consumer expectations for more control over the services they receive and where they receive them. In this topic paper, we reviewed how the 8 states have adapted I& R programs, many using federally funded Aging and Disability Resource Centers as a mechanism, and how they adapted traditional case management approaches. We did not review preadmission screening programs for this topic paper. (Preadmission screening has been widely critiqued as an ineffectual as a tool to help consumers make informed decisions about nursing homes; among the problems are delegation of 7 Among the 8 States, Minnesota, Texas, Vermont, and Washington have state-wide systems in place; Florida and New Mexico have begun making systems operational; and Arkansas and Pennsylvania are in planning stages for such a system. 8 The way case management is used to help consumers make difficult decisions may change under the proposed new CMS regulations on case management, to be implemented in March See: This Topic Paper was drafted before the proposed changes. In the final case studies for each State, we will discuss the implications of the changes, if any, for that State. Topics in Rebalancing, Making Choice Operational, page 8

16 the screening to the hospitals; including only those who will be entering a nursing home under Medicaid in the assessment; and doing assessments after the consumer is already in a nursing home.) Initiatives Developed With Grant Funds Since 2001, States have been able to apply for federal Real Choice System Change (RCSC) grants to help them States have used the array of Real Choice System Change Grants to build consumer decision-making into the fabric of their LTSS systems. build their systems of services needed to support the Olmstead decision, the New Freedom initiative, and community-based LTSS. Table 1 summarizes all the RCSC grants received by the 8 States since 2001 and each State s Cash and Counseling activity. Table 1: Grant Programs with Implications for Informed Decision-Making in Eight States Grant and Year Initiated Grant Program AR FL MN NM PA TX VT WA CMS Real Choice System Change Grants Aging & Disability Resource Center Nursing Facility Transition Grant Real Choice System Change Grant (infrastructure) Community-Integrated Personal Services & Supports Respite for Children (Feasibility Grant) 03 Community-Based Treatment Alternative for Children 03 Quality Assurance/Quality Improvement Grant Independence Plus Grant 03 Money Follows the Person Grant Mental Health Systems Transformation Integrating Long-Term Supports & Affordable Housing Comprehensive System Change 04 Family-to-Family Information System Transformation Grants Money Follows the Person Demonstration Cash and Counseling Note: The grants with the year of initiated shaded in gray all contained explicit components directed towards increasing consumer choice based on our review of material on goals and activities for all the RCSC grants. 9 Many of these grant projects bear directly on building and testing ways to increase informed consumer decision-making. In particular, funding for Aging and Disability Resource Centers (ADRC) has provided additional opportunities to plan for and improve information, case management, and consumer decision making. Besides the ADRC grants, which are a joint project of CMS and the Administration on Aging, States have competed for other RCSC grants from CMS that offer them opportunities to build better consumer information into their programs. For example, the Family-to-Family (FTF) Health Care Information and Education Centers have improvement of consumer education for families of people with developmental disability built into their mission, the Nursing Facility 9 See Real Choice System Change Grants Compendium, Sixth Edition, CMS. On Web at last visited April 15, Topics in Rebalancing, Making Choice Operational, page 9

17 Transition Grants (NFT), which are let to help States move Medicaid nursing home residents who so choose into the community inevitably must grapple with developing an approach to inform consumers about the choice of community care. Going beyond ADRC, NFT, and FTF grants that directly contain objectives relating to enhancing consumer information, States have incorporated enhancing choice in many of these RCSC grants. Similarly, the Integrating Housing with Services grants have been used to make information about housing choices more transparent, and the C-PASS grants to develop personal attendant and support services have been used to educate consumers about these programs. Other non-cms grant opportunities, notably the development of a Cash and Counseling through grants from the Robert Wood Johnson Foundation (RWJF), also are also relevant to promoting informed decision-making. Not only does the counseling component entail helping the consumer make decisions about how to use a cash allowance, but for consumers to make the additional decision to use a cash allowance instead of in-kind services, they must exercise choice between cash and in-kind options. Using RWJF funds, some States have developed effective videos and print materials that provide information about options. All told, the 8 States received 42 such grants by In addition, 3 States (Arkansas, Texas, and Washington) received grants in 2006 to participate in the first round of the national Money Follows the Person (MFP) Demonstration, which allows them to avail themselves of favorable federal Medicaid matches for the first year after eligible consumers leave institutions and enter eligible community settings. Pennsylvania received an MFP grant in the second wave of funding in the spring of By design, States participating in the MFP demonstration must give attention to how to ensure that all consumers eligible for transition are enabled to make informed decisions on whether they wish to leave and where they wish to go. State Approaches to Information Provision and Options Counseling General Approaches One of the criteria for an informed decision is that it is made with accurate, unbiased information about meaningful choices and the likely benefits and risks of each choice to them. Potential and current program participants need such information, as do their family members or legal agents. Individuals who serve as decision Decision advisors, including family members and professionals who interact with older people and serve as decision intermediaries or assistants need accurate information. Also, the professionals who assist consumers must have attitudes open to the full range of consumer choice. brokers, including hospital discharge planners and case manager or care coordinators also need to act from accurate information about local resources. States can undertake steps to increase the likelihood that consumer, involved family members, and other consumer agents, including guardians or conservators, are well informed. Also, States can act to increase the likelihood that those who act as gatekeepers for services and those who advise consumers are informed about options, and are open to consider community care as a reasonable choice for a wide-range of consumers. If hospital discharge planners, case managers, and other professionals who come into contact with persons with disabilities have incomplete, out-dated, or erroneous ideas about care options, or if they embody paternalistic attitudes, they may be selective in the information they provide the consumers. Public and professional education and awareness campaigns, therefore, can be building blocks to make Topics in Rebalancing, Making Choice Operational, page 10

18 choice more available. Similarly, preparing and disseminating resource lists and explication of relevant State and Federal policies affecting consumer options in print and web formats is another strategy. Several strategies available to states are discussed below. Aging and Disability Resource Centers (ADRCs) ADRC s are envisaged as visible and trusted one-stop sources of information and assistance to help consumers make decisions about services. Among the grant-funded programs associated with RCSC, the Aging and Disability Resource Centers merit particular attention. Recognizing that State systems vary in integration across functions and disability groups, the program offered States additional resources and an opportunity to plan for the way information and assistance would flow to consumers and prospective consumers of LTSS. Each State was required to concentrate on aging persons and at least one other disability population in the 3-year grant period, thus promoting further integration of approaches across disability populations. The required functions of ADRCs fall into 3 categories: promoting awareness and information (e.g., public education; information on LTC systems); assistance functions (e.g., LTSS options counseling, benefits counseling, employment counseling, referrals, crisis intervention and short-term case management, and/or long-term future planning); and access functions (eligibility screening, private pay assistance, comprehensive assessment, establishing program eligibility, and/or establishing Medicaid financial eligibility). In the press release of then-hhs Secretary Tommy Thompson, the ADRC s were envisaged as visible and trusted places where people can turn for information on the full range of long-term support options, and also as "one stop shopping centers to help consumers learn about and access long-term supports ranging from in-home services to nursing facility care. The press release also referred to offering consumers reliable information to help them make appropriate choices for themselves and their families." All 8 States in the Rebalancing Research Group have been awarded ADRC grants: Minnesota and Pennsylvania in 2003, Arkansas, Florida, and New Mexico in 2004, and Texas, Vermont and Washington in These funds were used to create pilots in geographic areas and/or to create virtual centers. The programs entailed partnerships with a wide range of organizations. The phrase no wrong door came into prominence to suggest that wherever the consumer initiated an inquiry he or she could be assisted through the inter-related processes of choosing services and determining eligibility. For example, the Minnesota ADRC extends its range of portals to senior centers and public libraries, and other States involve agricultural extension agents. Co-location of personnel was introduced into some pilot centers to ease financial and functional eligibility determinations and to provide assistance for a range of disabilities. Six of the states planned to include all populations with disabilities regardless of age or type of disability by the end of the project; the exceptions are New Mexico, which is limited to seniors and persons with physical disabilities, and Florida, which is limited to seniors and persons with serious mental illness. In practice, however, some States with ADRCs that are targeted to all populations, for example, Minnesota and Arkansas, have a lesser capacity in the developmental disability area than in the areas of aging and physical disability. Depending on the way the ADRC is structured, it may assist with providing the information needed for an informed decision, but also for providing or linking the consumer to someone who can provide decision-assistance to allow the consumer to reflect on how the various options comport with their own values and preferences, another criterion for informed decision-making. Arguably, for the ADRC to have a meaningful role related to that criterion, it would need to be accessed by individuals at critical moments on decision-making, and it would need to be able to Topics in Rebalancing, Making Choice Operational, page 11

19 link to face-to-face contacts. Some ADRCs are designed to be most helpful to persons at early stages of thinking about long-term support and/or have little ability to impact persons making decisions after a crisis such as an older person who has been hospitalized or moved to a nursing home. ADRC s cannot be viewed in a vacuum. The 8 States have differing availability of community services and differing challenges in evolving systems where consumers have quick access to preferred services. They differ in the extent to which funding and service systems for various disabilities are integrated. They vary in their use of information systems. This variation the strategic use of an ADRC to improve consumer choice, as the examples below illustrate. In 2004 when its ADRC grant was awarded, the State of Arkansas was in the midst of developing a streamlined and expeditious initial assessment process for LTSS services, closer articulation of programs across disability groups, and state-wide assessment protocols. Although Arkansas had created innovative, consumer-directed programs for seniors and people with physical disabilities, its institutional use remained high, particularly for persons with developmental disabilities. Most AAAs in Arkansas delivered in-home services directly, requiring that the State utilize state-employed nurses for assessment and entry to the waiver programs for seniors. Arkansas used its ADRC in a 10-county AAA (the only AAA that did not provide services) to pilot tools and protocols for screening, assessment, and webbased self-assessment and to undertake a program that included all populations with disability including those with developmental disability. Beginning in the 1970s, Florida committed State funds for community services for older peoples through its aging network of 11 Area Agencies on Aging and its larger network of statutorily-defined geographically-based lead agencies; as HCBS waivers were initiated the same network managed them. By 2004 when the federal ADRC grant was funded, Florida operated numerous LTSS programs, fragmented by population group and managed by multiple State agencies. The State was in the process of expanding its community-based services for persons with developmental disability, and had developed some capacity for consumer-directed services. Since the 1990s, the State had expanded the use of private managed care agencies for long-term care, especially for seniors. Roles for the aging network programs were being reconsidered in the light of evolving programs. The Florida ADRC was limited to elderly people and to consumers with severe mental illnesses with pilots designed to launch a statewide legislatively-mandated elder-specific Aging Resource Center (ARC) program. ARCs, in turn, were a vehicle for reconfiguring roles for AAAs and the Aging network. Topics in Rebalancing, Making Choice Operational, page 12

20 MinnesotaHelp Network: Evolution of an ADRC The MinnesotaHelp Network aims to provide information to individuals, their families, and caregivers who need personalized assistance to find and access the long-term care services they need. Rather than produce one-stop shopping opportunities, this ADRC strengthens existing health and human services systems and provides that network with tool and training. The ADRC is organized to provide on-line assistance, telephone assistance, and face-to-face assistance. On-line assistance, at provides a state-wide resource data base that is available to all linkage lines and all in-person assistance sites. It now includes a self-administered Decision Tool for older people (see below pp ), a Decision Tool for people with disabilities, and a Youth Resource Advisor protocol, a jobs link, and a housing link, and a link to Minnesota Veteran s Resources. A visible link to ParentsKnow ( describes special resources for children by locality and by age group from birth to high school. Future plans include a secure on-line chat room capacity. More than 40,000 unique visitors logged into the site in 2006 for information about more than 11,000 providers and 27, 000 services. Telephone assistance is provided statewide through the Senior Linkage Line, the Disability Linkage Line, and a Veterans Linkage Line. For Senior Linkage Line, a single number is answered at 7 call centers, supported by paid outreach workers and over 400 volunteers. Tradition Area Agency on Aging areas of expertise have been expanded and consolidated here, including Medicare (A, B, C, & D), health insurance counseling, prescription drug expense assistance, long-term care insurance, grandparents raising grandchildren, caregiver support and training, and long-term care planning assistance. The Disability Linkage Line has one number that is answered at 4 regional call centers. The Veterans Linkage Line, the most recent addition, is consolidated at a single location with telephone assistance Monday through Friday in working hours and a link to emergency crisis help Face-to-face assistance is organized through outreach sites (i.e. community-based organization (such as dining sites, clinics, service providers, libraries, etc.) that t maintain a kiosk of information about Network resources and access points (i.e. highly visible critical pathway location (i.e. clinics, hospitals, faith communities, senior centers, etc.) that maintain a kiosk of information about Network resources and that has trained staff on hand that can help people use Network tools, answer questions and find resources. The toolkit for access point personnel includes training materials, and referral protocols. Consumers who appear to be eligible for Medicaid LTC are referred to their county long-term care consultation (LTCC) program for more targeted face-to-face assistance. By 2003, Minnesota had evolved a well-articulated case management system for services to older people, a network of community programs for people with developmental disabilities, and a number of consumer-directed initiatives. Always heavily bedded with nursing homes, the State had reduced that sector. As a state with a strong system of county government, entry to LTSS was through counties (or Indian tribal entities). Case management was refashioned in the late 1990s as Minnesota Long-Term Care Consultation (LTCC) services, but still operated by public county agencies, while at the same time the State moved towards delivering some LTCC through managed care organizations. The ADRC was fashioned to work within the framework of Minnesota s functioning system, its LTCC, and its strong county governance. Minnesota s ADRC has developed approaches to increase early information to consumers and decision-assistance, to work with partners who can have a local counseling presence, and to interface with LTCC. Some of Minnesota s strategies are highlighted elsewhere in this report. See the side-bar for an example of how one ADRC provides a vehicle to enhance informed decision-making in a variety of ways. Topics in Rebalancing, Making Choice Operational, page 13

21 By 2004, New Mexico had achieved deinstitutionalization of its mental retardation/developmental disability institutions; dramatic expansion of HCBS for all populations, partly through establishing a Personal Care Option under the Medicaid State Plan; and considerable consumer direction, including payment of family caregivers. It has not developed a strong and unified case management system, and was struggling to establish effective and expeditious entry systems in a State with many remote, sparsely populated areas. Its ADRC program aimed to develop effective information-driven Options Counseling in a State where consumers can create individualized LTSS packages but front-end screening, assessment, and coordination is laborious. Pennsylvania invested early in case-managed service systems for the elderly through its 52 Area Agencies on Aging (AAAs) although it was slow to develop HCBS waivers for the elderly, and initially used lottery funds initially. In 2003, when the State of Pennsylvania received its ADRC grant, its information systems and its LTSS services systems for various populations were particularly fragmented. Several years of investment were needed before resource information was compiled and an urban and rural ADRC s launched in Using a no cost-extension, the pilot ADRCs opened in 2006 in an urban and a rural area became vehicle for the Governor s Commission on Health Care Reform to pilot extensive collaborative networks in those 2 areas and position itself for a State-wide initiative under a 2007 grant from the Administration on Aging that built on both the ADRC experiences and its 2004 Initiative for rapid screening, assessment, and services in 10 counties. 10 Pennsylvania s I & R system is not yet on-line, and the State is early planning stage for a system. The State is also reconsidering the roles of its 52 AAAs in LTSS assessment. 11 By 2005, Texas had evolved a well integrated planning and management function across disabilities at the State level, a functioning system, early application of money-followsthe-person programs and transition counseling, and strong consumer constituents involved at the policy level. The State also struggles with long lists of consumers who expressed interest in various programs where intake is limited. Texas used its 3 ADRC projects to streamline access and assistance in their regions through the use of shared intakes, assessments and referral protocols. The ADRC pilot sites were encouraged to consider different MIS modifications and improvement options, including enhancements that will allow sharing of client and program data between organizations, and to determine applicability for their use locally. By 2005, Vermont operated a Community Choices 1115 waiver that breaks the connection between nursing-home certifiability and community care, had a functioning system, and had achieved substantial community choices for all populations, especially persons with developmental disabilities. Vermont used its ADRC to model even closer coordination in 2 pilot areas; to expand use of Refer software from 3 to all 5 AAAs; to link the Refer databases to the program; to develop presumptive eligibility programs for specific populations, including persons with traumatic brain injury; to learn more about gaps in 10 In September 2006, Pennsylvania was awarded almost 400,000 from AOA to expand its ADRC program. For announcement see last visited April 20, Pennsylvania Association of AAAs(P4A). Talking points regarding the proposal to privatize assessments. On web %20ASSESSMENT%20PRIVATIZATION%20PROPOSAL doc, last visited April 20, Topics in Rebalancing, Making Choice Operational, page 14

22 service for people with physical disabilities; and increase the readiness of its one Center for Independent Living to coordinate services for people with physical disabilities. By 2005, Washington already had in place: a information and referral system, a statewide CARE (Comprehensive Assessment Reporting and Evaluation) information system to guide assessment, case management, and quality monitoring; a service system offering many choice including independent providers, who may be family members; and a high degree of integration across disability groups. From this starting point, the Washington ADRC was designed to maximize the effectiveness of those systems. Table 2 summarizes each State s ADRC program in the context of overall LTSS development. Case Management Case management systems in Case management approaches for LTSS evolved in the 1980s LTSS were established in the 1980s and and 1990s under state-funded and waiver programs for people with disabilities, especially seniors, and persons with early 1990s as a cycle including developmental disability; case management can be a vehicle to outreach and screening, assessment, care enhance informed decision making. planning, service implementation (with or without purchase power and financial control), monitoring the quality of services and ongoing needs of clients, and re-assessment at intervals. 12 Early state-funded programs for older people had strong case management components, as did a series of CMS-funded demonstration projects in the early 1980s. Similarly, programs for people with developmental disabilities and mental retardation that emerged in the late 1970 s also had a strong element of professional case management. The HCBS waivers, first available in 1982, reinforced the idea that case management was an important service function for consumers and administrative function for programs. In the 1990s, the proper relationship between case management and service provision was studied and debated with growing but incomplete consensus that a conflict of interest occurs when case managers or their organizations provide services. 13 Case management looked somewhat different in other sectors such as mental health, and developmental disability where it tended to be less separated from service. 14 The targeted case management program that is covered under many State plans had its roots in this other form of case management that is not tied to service authorization and entails crisis intervention and individual advocacy for particular 12 For case management roles in quality assurance, see Kane RA, & Degenholtz HD (1997). Case management as a force for quality assurance and quality improvement in home care. Journal of Aging & Social Policy. 9(4): For modeling of the costs of case management as a proportion of service costs, see Davidson G, Penrod J, Kane RA, Moscovice I, & Rich E (1991). Modeling the costs of case management in long-term care. Health Care Financing Review, 13 (1): The Long-Term Care Channeling Demonstration, a randomized trial of 2 different models of HCBS in 10 States used case management as a central intervention (to coordinate care in the brokerage model and purchase it within a budget in the financial control model); much practice wisdom and some research findings on caseload size and case management roles emerged from that social experiment. See B R Phillips, P Kemper, and R A Appelbaum (1988). Case management under channeling. Health Services Research, 23 (1): Kane,RA & Frytak J (1994) Models for case management in long-term care: Interactions of case managers and home care providers. Report submitted to the U.S. Congress Office of Technology Assessment in October Minneapolis, MN: University of Minnesota National LTC Resource Center. 14 See Fogel, B, Fureno, A, & Gottlieb, G (eds.) (1990). Mental Health Policy for Older Americans: Protecting Minds at Risk. Washington, DC: American Psychiatric Press. Topics in Rebalancing, Making Choice Operational, page 15

23 populations. A considerable literature has emerged about whether case managers can function simultaneously as effective advocates for individuals and their choices and system gatekeepers See Kane RA, Penrod JD, and Kivnick HQ (1994). Case managers discuss ethics: Dilemmas of an emerging occupation in long-term care in the United States. Journal of Case Management, 3(1):3-12, 1994; Kane RA. Case management in long-term care: It can be ethical and efficacious. Journal of Case Management, 1(3):76-81, Topics in Rebalancing, Making Choice Operational, page 16

24 Table 2: Activities of ADRCs in 8 States State (start date) AR (04) FL (04) MN (03) NM (04) PA (03) TX (05) VT (05) Populations, Scope, Activities All populations. Community Choice Resource Center (AAA of Southwest Arkansas) piloted in a multicounty area. Developed a model website for self assessment. Elderly and Severely Mentally Ill populations. 3 pilots: Fort Lauderdale (Broward County); Senior Resource Alliance (4 counties in Orlando area); and the AAA Pasco-Pinellas, based in St. Petersburg. No wrong door emphasized. Co-located access services piloted. All populations, including caregivers and private pay. Program called Tough Decisions, Clear Choices. Pilots in 4 locations in Hennepin County (Minneapolis area) and virtual network state-wide. Model website for structured decision-making. Builds on Minnesota s 211 system. Aging and physical disability, including private pay. Statewide virtual network, operating out of Santa Fe. Telephone options counseling. ADRC has access to client-specific data bases and can mirror official assessments. All disabilities and ages. 2 pilots opened in Spring of 2006: the Allegheny Link to Aging and Disability Resources (in the Pittsburgh area) and Cumberland Link in a rural area centered in Carlisle, Pa. Created new data bases of services and manuals, and collaboration across AAAs and CILs, housing authorities, and many other partners. Follow-on 2006 grant will allow state-wide expansion and automation of data bases. All populations. 3 pilot areas. The Texas Aging and Disability Resource Centers in 3 pilot areas (San Antonio, Austin, and an area in Central Texas) to provide consumers with information, referral and counseling, case management, and Medicaid eligibility determination for public and private pay individuals with long-term care needs. Products from pilots include intake and assessment tools, outreach, training and resource materials, reports, surveys and project evaluations. All populations. 2 pilot ADRCs. Streamlined eligibility process for Medicaid and Medicaid longterm care, and a seamless link between the ADRCs and the Medicaid eligibility determinations. State Context Except for Cash & Counseling, DD services are separated operationally from the other LTSS waivers & programs. Since 2001, Arkansas has been developing a single entry-point and expedited application processes. In 2004 when the ADRC was funded, the Florida legislature enacted a bill transforming all 11 Area Agencies on Aging (AAAs) into Aging Resource Centers (ARCs). The 3 ADRC s also served as the first ARC pilots. Aging services are somewhat separated from all other LTSS services, and entail mandatory managed care for much of the senior population. Long-Term Care Consultation is the case management model used for seniors. MN builds on an operational system. The LTC Coordinating Committee (comprised of Secretaries of Aging, Health, and Human Services) jointly planned the ADRC as a vehicle to improve information and streamline eligibility in a State with vast rural areas PA officials are aware of fragmentation in its service and information systems, and delays in accessing services. In 2004, the Governor initiated a 10-county Community Choices program that was able to speed financial and functional ability and have Medicaid waiver services available within 3 days. The expansion of Community Choices and the development of ADRC s were to be complementary efforts. TX has strong integration in planning and operations across disability at the State level and commitment to consumer choice and flexibility. It struggles to reduce long interest lists for various services and, building on its system, the State has a priority to test ways to bring resources across disabilities together at local levels with stronger shared information systems. Given its strong system of community LTSS and functioning system, VT was able to use the ADRC pilot to refine specific areas such as presumptive eligibility for persons with TBI, bringing REFER software to 2 AAAs lacking it, and improving capacity of the one VT CIL. Topics in Rebalancing, Making Choice Operational, page 17

25 WA 05 All populations and incomes. A model site is being established in Pierce County (Tacoma) and a statewide information and referral and assessment resource database and client management system. WA has a functioning system and a stateof-the-art CARE tool to assess, allocate, and monitor services for all populations. The pilot ADRC works on further articulation of the system and improving ways of getting information to consumers. The concepts of person-centered planning, and consumer-directed care pose challenges to a traditional case managed system. 16 Person-centered planning. Person-centered planning models for consumers with mental retardation or developmental disabilities have been evolving since the 1970s in the United States, Canada, and the United Kingdom. 17 In contrast to system-oriented case management, the consumer is at the center of developing his or her life plans person-centered planning. The plan, therefore, is unlikely to fit into neat service boxes developed by the system. One definition of Person-Centered Planning is as follows: Person-centred [sic] planning is a process-oriented approach to empowering people with disability labels. It focuses on the people and their needs by putting them in charge of defining the direction for their lives, not on the systems that may or may not be available to serve them. This ultimately leads to greater inclusion as valued members of both community and society. Person-centered planning involves the development of a "toolbox" of methods and resources that enable people with disability labels to choose their own pathways to success; the planners simply help them to figure out where they want to go and how best to get there.18 Methods of calculating individualized budgets support person-centered planning. Many writers have pointed out that person-centered planning requires a dramatic mind shift, an elimination of attitudes that case management must be primary to and at the hub of service delivery, and that case management is responsible for marvelous results. Early writers about person-centered planning also note contrast it to case management, which they perceive as costly and prone to detract from person-centered approaches. On the other hand, person-centered care models do not automatically afford opportunity for informed decision-making at key junctures in service planning unless such opportunities are built-in. Consumer-directed care. Consumer-directed care, a term that emerged in the late 1980s as an approach to services for older people and people with physical disabilities, has similarities to person-centered planning but is perhaps not quite such a broad concept. It is usually discussed as an option within a case-managed system where selected and self-selected consumers can themselves decide on the services they wish to receive (within a budget) and make decisions 16 See Footnote 8. The new proposed new CMS regulations on case management, to be implemented in March 2008 will require some States to dramatically rethink their case management systems. 17 For an excellent history and bibliography on person-centered planning principles and tools, see Amado, Lakin, Hewitt, Larson, & Doljanac (2005). Evaluation of Case Management Model, Hennepin County Developmental Disabilities Program, Minneapolis, MN: Institute on Community Integration, University of Minnesota. Also on Web at last visited May 26, From materials on person-centered planning developed by the Employment and Disability Institute at Cornell University s School of Industrial and Labor Relations. See Topics in Rebalancing, Making Choice Operational, page 18

26 about selecting and dismissing workers. Payment is typically made by a fiscal intermediary. The National Association of State Units used the following definition: The term consumer direction describes programs that offer maximum choice and control for people who use services or other supports to help with daily activities. In consumer directed programs, people with disabilities can choose to select, manage, and dismiss their workers. They can receive services wherever they live. They can decide which services to use, which workers to hire, and what time of day they will come and leave. They can decide whether to hire family members and whether to spend the available funds on things other than services. 19 Concepts such as person-centered planning and consumer-directed care vest power in the consumer or the consumer s agents as trusted decision-makers. More traditional case managers have not disappeared, but their roles have been narrow in some cases (by moving some clientele into consumer-directed options) and modified in other cases (for example, to comprise administrative functions, some crisis intervention, and individual advocacy for those who have no advocates). Case management and informed decision-making in 8 States. Summarizing, there are several reasons for States to reconsidering their established case management systems: a growing emphasis on consumer choice rather than professional judgments of appropriate services, fueled in part by the advocacy of younger people with disability and parents of children with disabilities to manage their own life choices; the struggle to fit consumer-directed care, individual budgets, and cash-and-counseling models into a case-managed system; the growing costs of case management in both the waiver programs and targeted case management; and the emergence of capitated managed care systems where, by design, service providers are responsible for allocating and coordinating resources. These considerations would lead to a diminishment of case manager s roles or a switch from resource relocation to decision advisement. Yet in terms of promoting informed decision-making, the decision assistant perhaps in a modification of the case management role, would need to be available at critical decision junctures, know the consumer and family well-enough to be a trusted agent for consumer s with cognitive impairment. He/she would also need to create a climate where consumers know that their decisions are not irrevocable and what to do if they change their minds. Further, a system promoting informed decision-making would be explicit to consumers about the possibility of trying a type of care in order to make the decision. Consumers and families choosing community care or self-directed care at the outset of receiving Medicaid services need to know that they can change their minds. Similarly, long-term nursing home residents and their family members may make multi-step decisions about leaving an institution first deciding to work with a case manager or system that have long been in an institution may need first to commit to exploring community care as a possibility and later, based on that experience, to move ahead. Informed decisions may need to be made over a period of months rather than hours. To that end, decision assistants who also have some authority over resources and person knowledge of the 19 See Consumer Direction: 2004 State of the States prepared by the National Association of State Units on Aging, on the web at last visited on May 34, Topics in Rebalancing, Making Choice Operational, page 19

27 consumer may be the most effective in helping consumers reach decisions, and more able to creatively help consumers envisage and gain some experience with potential choices. Case management varies in program design in all States, but each state has some form of case management underway, and most States are undertaking re-thinking about optimal case management for seniors. Table 3 summarizes how case management historically developed for seniors and describes emerging issues in reshaping case management. AR FL MN NM PA Table 3 Summary of Case Management for Seniors in Eight States Pattern of Case Management Most AAAs in AR deliver services, and home health agencies objected to their case management roles. State-hired nurses do initial assessments of eligibility. Targeted case management has been used for waivers. State-wide assessment tools were historically under-developed, but are now being planned. Multi-county AAAs and larger number of lead provider agencies do assessment and ongoing case management, respectively. A CARES team of RN and Social Worker do waiver assessments, and same lead agencies provide services. The State invested heavily in standardized assessment and scoring protocols for service needs, and training case managers. Provider agencies work under budget allocations and bill Agency for Health Care Directly. County based case management by RN/social worker teams from county social service and county health departments. The State developed assessment tools and training, but county control is strong. As a rural State that came relatively late to LTSS for seniors and that incorporated consumer direction as services expanded, New Mexico did not develop strong case management programs. Eligibility functions are centralized and contracted to an HMO, which hires local home health nurses to do in-person assessments. Each of 52 AAAs became Corporations on Aging that provided assessment and allocated services. The Philadelphia Corporation on Aging and the PA Institute for Case Management, developed technology that was adopted nationally. When initiated, senior HCBS waivers were also managed by AAAs. Case management is separated from service provision, which is contracted from providers. The State lags in ability to generate systematic information about functions and costs of case management. Forces for Change in Case Management AR pioneered in Cash and Counseling initiatives. For these, the State developed a counseling capability apart from case management as well as a fiscal intermediary capacity to approve expenditures. In 2007, the AR legislature mandated formal options counseling for seniors (discussed below), and State employees will perform this counseling. FL has considerable experience with managed care for LTC for Seniors under its Diversion waiver and other programs. The CARES team performs the initial assessments, but once the consumer chooses the capitated provider, the latter provides case management. FL is also implementing a Consumer Directed Waiver for all target populations. In recent years, FL has envisaged that the AAAs will move strongly into the role of providing information, and has State legislation in place to create an Aging Resource Center in each AAA area. Managed acute and long-term care for dually eligible consumers is a strong force. Also, seniors in the Elderly Waiver were enrolled into managed LTC in 2005; after enrollment, the managed care organization provides case management. Another force for change is the consumerdirected program, available to all populations but underutilized for seniors. This program is managed through approved fiscal intermediaries. Without a history of case management through AAAs and long distances, NM is unlikely to develop a case management program for seniors through AAAs. NM has a strong consumer direction focus and incorporation of paid family members as caregivers. In some areas, Centers for Independent Living play an important role with seniors as well as other people with disabilities. There are concerns about the uneven capacity of AAAs to provide case management, and the costs of case management. There are also concerns about entrenched ideas that may not further community-based care. At the same time, some Corporations on Aging have highly developed expertise, and AAAs are assigned a leadership role for transitions counseling to help individuals leave nursing homes. Topics in Rebalancing, Making Choice Operational, page 20

28 TX VT WA Case management for seniors did not evolve as a strong system in this very large state. There is much local variation. AAAs in Vermont had strong advocacy role historically and reluctance to assume case management. Home health agencies providing service also did case management with some oversight by State employees. Extremely strong models of case management, guided by protocols and a well developed information system for assessment and quality, which is applied to all populations. For seniors, Stateemployed regional case managers divide roles with AAA case managers. The strong push for consumer direction will influence the further evolution of case managers. System navigators and transition counselors are engaged under state contract to help people leave institutions. With VT,s Choices for Care program, the State hired assessors to implement uniform enrollment procedures. The strong push for consumer direction and the exploration of managed care models are likely to militate against development of a traditional case management approach. WA has evolved a service provision model that relies heavily on unionized individual providers. Its Home Care Quality Authority has assumed some roles to help consumers and providers connect. The case management system and it information base for quality is likely to continue and can be used to enhance consumer choice. Pennsylvania and Washington had the most developed systems of case management for seniors going into the post-olmstead area, in the sense of protocols for assessment and care planning and well defined State policies. Minnesota also had s high case management presence but with a great deal of county autonomy. Florida, too, had invested in a case management system with state-wide assessment protocols, initial assessment by AAAs and ongoing case management by lead provider agencies; though in Florida case managers have no direct control over budgets. With variations, Arkansas, New Mexico, Texas and Vermont had less established case management systems for seniors. As Table 3 shows, the 8 States vary in details such as whether case managers are state employees, whether AAAs or other municipal authorities are involved, the extent to which the information systems are decentralized or centralized at the State level, and how the money changes hands for the case management function. All States are being affected by trends in consumer direction and some States are being affected by managed care; this in turn is changing the traditional models and roles for case managers in States with a historically large investment in case management, and is influencing how other States evolve case management. The State of Washington has a built-in case management system with clinical sensitivity and ability to monitor quality and assist with decision-making; presently these case managers are the first line of assistance for much consumer assistance with decision-making. Arguably this case management network can play a positive role in promoting informed decisions, and indeed in Washington strong case management with both administrative and advocacy components has been compatible with a high prevalence of consumers selecting independent providers (IP), who are persons of their choice including their relatives. Examples of Enhancing Informed Decision-Making in 8 States In this section we use examples from the eight States to further discuss several inter-related topics: the development of consumer self-assessment tools and consumer decision-making tools, the development of use-friendly resource material, options counseling and case management models, and presentation of choices to persons who are already living in institutions. Screening and Self-Assessment Tools ARGet-Care. AR Get-Care ( is the state-wide version of a selfassessment tool that was piloted in southwest Arkansas under the name SA-Hello ( On the home page, which allows for the choice of English or Spanish for all subsequent searches, users have the choice of searching for services, assessing their own Topics in Rebalancing, Making Choice Operational, page 21

29 needs, of learning about care options (see the Appendix, Figure A.1). The home page indicates the collaboration between Aging and Disability Services and the Developmental Disability Services by a letter signed by the two division directors. Figure A.2 in the Appendix shows the beginning of the self-assessment in AR-GetCare. The items deal with: 1) checking whether care is sought for self, a spouse, a parent, or other; 2) checking the preferred location for receiving care; 3) a checklist of 5 ADL tasks plus medication where assistance could be needed, 4) a checklist of 7 household chores where assistance might be needed; 5) an item on mobility; 6) an item on cognition asking whether the person has experienced symptoms such as confusion about where he or she is, and forgetting names, or none of the above; 7) an item to check the amount of care and social support currently received; 8) whether the consumer can pay out-of-pocket entirely, partly, or not at all; 9) a check-off list for health insurance status (Medicare, Medicaid, Veterans Administration, none, other, none); 10) a checklist of whether the person has any of 15 medical conditions (Alzheimer s disease, brain injury, cancer, stroke, pulmonary or lung disease, heart problems, recovering from surgery or injury, diabetes, Parkinson s disease, multiple sclerosis, developmental disability, HIV/AIDS, psychiatric illness, depression, and other); 11) my 2 or 3 most pressing needs (food, housing, daily living assistance, skilled nursing care, rehabilitation, social and recreational activity, assistance in developing a plan of care, transportation, companionship, support in dying, management of over-all needs, and care in case of an emergency); and 12) whether the consumer might find 3 particular services useful (legal advice or estate planning, support services for caregivers, and professional care management). The consumer also enters his or her county of residence to receive a services list convenient to him or her. Each scenario described in the self-assessment generates specific program possibilities and resource lists for the geographic area. If the consumer was thought to be possibly eligible for a particular income-based program that information is provided with links to information about applying. In all cases, when the consumer clicks the learn link, he or she is provided with considerable information on a topic e.g. on a particular disease, or a particular public program. To generate a plan, consumers can skip some of the 12 questions, but they must answer whether they want care at home, in a residential facility, in an institutional setting, or not sure. Figure A.3 in the appendix shows an example of a result from the application of the self-assessment tool. Vermont Screen Door. From Vermont s home page for the Department of Aging, Disability, and Independent Living (DAIL), the user can click a link in the top navigation Do you need help now?, which opens to an Emergency Help page and to another link to Help for Vermonters. The user then sees a screen that allows a choice between the Vermont Screen Door, a personalized self-assessment system, or the website and information on dialing Figure A. 4 in the Appendix shows the entrance to the Vermont Screen Door, and Figure A. 5 shows the beginning of Vermont s self-assessment tool. As with AR-GetCare, the person completing the screen provides brief information and receives individually tailored suggestions and resource information. MinnesotaHelpInfo and Structured Decision Tool. MinnesotaHelpInfo ( is another self-assessment tool linked to Topics in Rebalancing, Making Choice Operational, page 22

30 resource information. It differs from the previous examples in that the user can select a longterm care decision tool that will take him or her through an ordered decision-making process. This process can be undertaken as a self-assessment, as combined activity of the consumer or a family member, or as a tool for long-term care consultants (Minnesota s term for case managers) to walk a consumer through a decision-making process. Figure A. 6 in the Appendix shows the entry into this system. If users click on the link to translation assistance in the top right corner of the screen, they open a screen that directs them in 10 different languages to an 800 number for free assistance in translating the material on the web. If users indicate a wish to Build a profile, they are brought to the screen shown in Figure A.7, where they identify who is responding by gender and zip code and begins replying to 20 initial self-assessment questions (shown in Table 4). Potentially, the user could go through a 14-step process, shown in Table 5. Module 2 and 3 generate more detailed self-assessment. Modules 5 through 8 offer information on topics the consumer might want to explore. Module 9 on housing options branches into one of to provide more information on living in your own home assisted living settings, or nursing homes. The underlying logic of this tool is that the consumer goes through a step of determining big branching decisions about care modalities such as home versus assisted living versus nursing home before choosing a particular provider of services. Module 13 on long-term care recommendations presents a table on the modalities a panel of experts would have chosen given the information in the self assessment to aide in the first stage of decision-making. Research on how experts reach their conclusions suggests that the discipline and role of the person who makes the recommendation is strongly associated with the result. 20 This has implications for consumers in interaction with various decision intermediaries; in practice, the recommendation received may depend on who you ask. Table 4: Initial Questions in the Minnesota Self-assessment Module 1. Do you need help to (check all that apply): Do light housework or household chores? 2. Have you wandered away or had physical or verbal outbursts more than once in the past 6 months? 3. Has a doctor ever told you that you have dementia or Alzheimer's disease? 4. Have you gotten lost recently or had trouble remembering things? 5. Do you have accidents with loss of bladder or bowel control? 6. Do you live alone? 7. Have you stayed in the hospital overnight in the past week? 8. Have you been admitted to a hospital overnight more than twice in the past 6 months? 9. Has a doctor told you that you may have 6 months or less to live? 10. Do you feel sad or depressed much of the time? 11. Have you been told by a doctor that you are depressed, or are you taking medication for depression? 12. Have you fallen more than twice in the past 6 months? 13. Do you see a doctor once a month or more? 14. Do you take more than 10 prescribed medications? 15. Are you currently on Medical Assistance (not the federal program Medicare)? 20 See Kane, RL, Bershadsky, B, & Bershadsky, J (2006). Who recommends long-term care matters? The Gerontologist, 46, Topics in Rebalancing, Making Choice Operational, page 23

31 16. If you answered yes to Question 15, please skip this question. If you answered no to Question 15, please answer this question: Have you been told you are eligible to receive Medical Assistance benefits? 17. If you answered no to Question 16, please answer this question: Not counting house and car, what are your assets (e.g., savings, property)? [determines if they are $6,001 or more] 18. Do you have family members who help you on a regular basis? 19. Do you have friends in the community who would be willing to help you on a regular basis? 20. Is it very important to you to be in charge of your personal care Source, adapted from Kane, Boston, and Chilvers, Table 5: Available Modules in Minnesota Decision Tool Module 1. Plan profile (who is responding, gender, zip code) 2. Self-assessment information 3. Daily living needs 4. Memory loss 5. Health insurance 6. Housing and home modification 7. Safety and security 8. Planning ahead 9. Housing options 10. Living in your home. 11. Assisted living. 12. Nursing homes. 13. Long-term care recommendations. 14. Next steps. Source: Adapted from Kane, Boston, & Chilvers, Reference 20. Having settled on a modality of service either based solely on the consumer s own determination or taking into account the expert panel, in the 2 nd phase of decision-making the consumers choose a provider. At this point the information now available in Minnesota is best developed for nursing homes. Beginning with the nearest zip codes, the computer generates a list of providers based on attributes that the consumer has indicated are most personally salient. Ultimately, the consumer can access a complete database of information about nursing homes in Minnesota, but the search begins with attributes the consumer deemed important. The quality measures are derived from ratings made by residents themselves in annual surveys of residents commissioned by the State and performed by an outside vendor. 22 This Minnesota decision-making tool is a work in progress. It illustrates new capacities in computer technology and the ability to generate information that can help structure a decision that could be used by both consumers and long-term care consultants alike. It also illustrates work yet to be done and unresolved issues. Among the former are: developing the information basis to offer consumers data on quality of in-home and assisted living services; developing parallel packages more suited for the use of consumers versus professional decision intermediaries; and developing better data for people with developmental disabilities. Another issue worth exploring is establishing consumer recommendations similar to the provider recommendations offered in the tool, developing video-taped or audio-taped materials where consumers who liked and did not like various choices speak about their experiences, or building 21 This system is described in a recent article, Kane, R.L, Boston, K, and Chilvers, M (2007). Helping People Make Better Long-Term Care Decisions. The Gerontologist, 47 (2), This rating system was put in place to develop a quality-based payment strategy for nursing homes and entails annual data collection in all Minnesota facilities. It is described in Kane, RL, Arling, G, Mueller, C, Held, R, & Cooke, V (2007). The Gerontologist, 47 (1), Topics in Rebalancing, Making Choice Operational, page 24

32 in other ways those consumers could get feedback from other consumers and their families who made various choices. This decision-making tool is a work in progress. It illustrates new capacities in computer technology and the ability to generate information that can help structure a decision that could be used by both consumers and long-term care consultants alike. It also illustrates work yet to be done and unresolved issues. Among the former are: developing the information basis to offer consumers data on quality of in-home and assisted living services; developing parallel packages more suited for the use of consumers versus professional decision intermediaries; and developing better data for people with developmental disabilities. Another issue worth exploring is establishing consumer recommendations similar to the provider recommendations offered in the tool, and building in ways that consumers could get feedback from other consumers and their families who made various choices. Adaptations to Information and Referral States have developed appealing ways to get information out to help consumers understand their options, and the kinds of programs available in the State. Increasingly the navigation on State websites is organized so that well-marked buttons to consumer information are found on the Home Page. Residential care facilities and assisted living are especially confusing to consumers. Many States have developed ways to convey information to consumers about what they should expect from residential care and how the State licenses it. Robert Mollica recently reviewed the way all 50 States communicate with consumers about residential care and assisted living. 23 Twelve States (including Minnesota) posted inspection and/or complaint data on their websites; fourteen States (including Florida, Pennsylvania, and Washington) had posted consumer guides to this sector of service. The State of Washington has developed extensive multi-language materials on line with options to request print versions. Figure A.8 in the Appendix shows a partial list of resources. Clicking on any one brings the user a great deal more information about the resources. Typically, the documents can be accessed on-line in 5-8 languages. For example, the important resource document, Medicaid Options for Long-Term Care Services for Adults can be opened in English, Cambodian, Chinese, Korean, Laotian, Russian, Spanish, and Vietnamese. Case Management in Vermont Choices for Care. Vermont has incorporated case management into its Choices for Care 1115 waiver, for which state-employed nurses perform the original assessments and Area Agencies and Home Health Agencies serve as case management providers. The definition, for Case Management Services reads that case managers assist Vermont requires State certification of case managers who operate within the DAIL system. 23 Mollica RL. Residential Care and Assisted Living: State Oversight Practices and State Information Available to Consumers. AHRQ Publication No. 06-M051-EF. Rockville, MD: Agency for Healthcare Research and Quality. September Topics in Rebalancing, Making Choice Operational, page 25

33 individuals in gaining access to needed Choices for Care (CFC), VT Long-Term Care Medicaid services as well as other medical, social, and educational services, regardless of the funding source for the services to which access is gained. Case Management Services provide detailed needs assessment and assist the individual in creating a comprehensive CFC Service Plan. Case Management Services provide ongoing assessment and monitoring. Case Management Services assist the Department of Disabilities, Aging and Independent Living (DAIL) in monitoring the quality, effectiveness and efficiency of CFC services. Manuals have been developed and are on the web for the CFC program, including separate ones for the various Levels of Need (e.g. Highest and high, Moderate) entailed in the system. The definition of case management is included as are the values of choice for the individual. Vermont established a certification program for case managers operated by the Division of Aging and Independent Living (DAIL) in order to ensure that those occupying the role of case manager understand and have capability for their roles as developed by DAIL. Case managers must successfully pass an examination, which is offered periodically by the State, within 1 year of employment. Examples of Options Counseling Above we discussed a traditional form of case management, and the way States are re-thinking case management in the light of changed service systems. Although the term case manager is still in use, other terms have come into use for either Case management functions are under revision in many of the States, and new terminology is being introduced. Three trends can be noted in case management (whatever it is called): it is being made available to people regardless of income, it has a distinct options counseling component, and it is particularly being designed to get information on options to people living in institutions. replacement or simultaneous use. In MR/DD services, the concept of the circle of support or the support team is in use in most States. The term counselor is used for partial case management functions in the Cash and Counseling, programs which is a major plank of LTSS in Arkansas. Florida, Minnesota, New Mexico, and Washington have all developed cross-disability consumer-directed services waivers; 24 some of these programs are mediated by fiscal intermediaries separate from case managers, although in States with single point of entry such as Minnesota, the case manager who oversees eligibility for the particular population makes the initial referral, and in Washington State the system case managers perform the counseling function. The State of Texas Department of Aging and Disability Services commissioned Navigant, Inc to conduct a complete review how the functions associated with case management occur in all the many Texas LTSS programs across all age groups, including even nursing home and ICF-MR care. 25 The Draft report presently under review concludes that the costs and 24 Kane, RA, Priester, R, Kane RL, & Spencer, D (2007). A Year in State Management Practices for Rebalancing Long-Term Care Systems: Update of Activities in 8 States, July 2005 to July, On web at 25 Case Management Optimization: Analysis of the Current Case Manaement System, Draft Navigant, Inc has been placed on the Web as a draft report for consumer and provider comments pdf last visited April 27, Topics in Rebalancing, Making Choice Operational, page 26

34 caseloads of case management functions varies enormously by program as does the way case management effectiveness is evaluated. This sets the stage for possible change in case management procedures in the near future. Among the trends in case management, by whatever name it is called, are the following: it is increasingly being made available to anyone in the State regardless of payment source; it has a distinct options counseling component, and the system is designed particularly to get information about options to consumers living in institutions. Long-Term Care Consultation in Minnesota. As mentioned in the context of the Minnesota Web-based decision tool, Minnesota has used the term Long-Term Care Consultation (LTCC) for what was formerly called case management for older people. Although some elements resemble the former case management program, including the use of social workers and nurses from county agencies, LTCC was meant to be substantively different from traditional case management, and more consultative than prescriptive. The mission of LTCC was to assist persons with long-term or chronic care needs to make informed decisions and select options that meet their care needs and preferences. It was initiated in 2001 as a service to offer more indepth assistance in planning for long-term care, provide access to information for appropriate care, prevent or delay facility placement and offer a continuum of care. Further, LTCC was designed to contain the cost associated with unnecessary nursing facility and other institutional admissions; in Minnesota the LTCC performs the Nursing Home Pre-Admissions Screening functions. MN LTCC consists of a team of at least one social worker and one public health nurse. For efficiency one person may conduct the screening with consultation from the other discipline prior to completing the process. Team members must have a four year college degree and experience in assessment planning and programming. Additionally, the teams have access to specialists who receive extensive training in the areas of Medicare and health insurance benefits, among others. Team members are ultimately responsible for providing LTCC services to all persons located in their assigned county who request services, regardless of eligibility for MN health care programs and income levels. A face-to-face assessment in the consumer s home must occur within 10 days of referral or self-referral. A face-to-face consultation is required within 40 days of a nursing facility admission for all persons under the age of 65. If this consultation and assessment is not complete within 40 days of a nursing facility admission or the nursing facilities will not be reimbursed for services. The team uses a standardized assessment form to identify the health and social needs of the person. The team also assesses other factors, such as family dynamics and available resources that can impact the care needed and received by the person. A community support plan is developed as part of the process. MyCare Vermont MyCare. Vermont is an integrated program of health services and longterm care, Vermont has issued an RFP and plans to enter into a contract for a provider of this Topics in Rebalancing, Making Choice Operational, page 27

35 integrated care in each of its 5 regions.26 In its RFP, the State has specified that each enrollee receives the services of an interdisciplinary team including, as a minimum, a primary care provider (who may be a physician or a nurse practitioner), a nurse, and a certified case manager. Further, the roles of licensed case manager in this newly envisaged program are spelled out broadly as follows: Complete basic psychosocial, environmental and economic assessments. Provide on-going coordination of psychosocial services. Explore financial options and eligibility, including employment services. Provide information about and assist participant in maintaining and establishing community links. Provide information about and assist participant with housing and transportation issues. Assist in crisis intervention. Provide assessment and coordination of mental health, alcohol and/or drug abuse services. Coordinate supportive counseling as appropriate. System Navigation. Texas introduced the term System Navigators as part of its Real Choice System Change Grant awarded in System navigators were to be: people whose first priority is to help people or their family members cut through red tape (across agencies and organizations) and receive the benefits, services, and supports they need to live and integrate into their own community. The project was piloted in two multi-county areas and continued after the grant ended in 2005, at which time 12 system navigators were in place. Note that New Mexico also uses the term system navigators and options counseling, though at this point the activities are at the point of initial referral, largely by telephone, and were discussed above under ADRCs. Relocation Specialists. Texas developed the concept of relocation specialists and the State has contracted with such specialists to help consumers make transitions out of nursing home. At present, the contracts are all with Centers for Independent Living (CILs). As agents of the State, these CILs have access to data from the facility-specific Minimum Data Set for nursing homes, and the name of residents who indicated in Section q that they would like to leave the nursing home. This list is a beginning point for work in a facility. Texas authorities say that the data generated is not highly accurate: some residents want to leave the facility whose MDS does not so specify, whereas some with MDS results suggesting a preference to leave no longer express the preference. Nonetheless, the relocation specialists have been highly successful in helping individuals leave the nursing home. Their role includes follow-up of the transition plan. Pennsylvania has begun a transition program through Area Agencies on Aging. Initially, the State operated a small program, Pennsylvania Transition to Home (PATH) under a 2000 CMS grant; this initial program had only 2 transition counselors operating in 4 counties, but managed to assist 51 of 119 consumers referred to them. At that time the consumers were largely under age 65. In 2005, Pennsylvania added Transition Services as a covered waiver service for 6 of its waiver programs, defined as one-time expenses not to exceed $4000 a consumer, and the pace of transitions increased. 26 Health and Long-Term Care Integration Project MyCare Vermont: Overview. November 28, On the Web at last visited April 26, Topics in Rebalancing, Making Choice Operational, page 28

36 Pennsylvania has enunciated a strong principle of self-determination for consumers in the transition process. In July 2006 the nursing home transition program was strengthened and expanded with additional training and more centralized data collection reporting. In particular, Area Agencies on Aging (AAAs), the providers of traditional case management to seniors, became responsible for providing extensive counseling on long term living options & community based services to newly admitted nursing home residents. To do so, AAAs receive new admission reports generated from MDS twice a month, and are expected to make Long Term Living counseling visits in a timely manner, to prevent loss of community. 27 A nursing home transition technical assistance guide was developed with extensive information on the responsibilities of the transition coordinators. 28 In this manual, the guiding principles on self-determination are explicit (see Table 6). Other useful features include a distinction between normal discharge planning and transition coordination with a clarification that nursing homes must provide normal discharge planning, and detailed information about accessing of housing resources. The program represents a major change for AAAs in Pennsylvania. Table 6: Self Determination in Nursing Home Transition in Pennsylvania Self- Determination is a key principle in Nursing Home Transition. Central to the concept of selfdetermination is the ability or right to make your own decisions without interference from others. Selfdetermination implies that the consumer should take responsibility for their decisions, to the fullest extent possible. The principle emphasizes the importance of autonomy, and the ability for individuals to take charge of all aspects of their lives. Self-determination includes consumers making decisions about: their future the supports and services they want to receive where they want to live how to spend their money the daily activities they want to engage in To ensure the NHT process is guided by consumer self-determination the transition coordinator should: make sure the consumer leads the process to the extent possible explain each step of the process to the consumer direct questions and decision-making back to the consumer assist to clarify the consumer s goals and personal choices encourage/expect the consumer to do as much of the work as possible support the consumer The goal is for persons moving from a nursing facility to the community to regain control and be in charge of their lives. The consumer should direct the transition process to the extent possible. The NHT Coordinator must not automatically take charge, but rather encourage the consumer to be an active participant in the process. If these core self-determination practices are not employed, then nursing home transition may well just be a different place to live, not a full life in the community. Arkansas Options Counseling, Act 516. Enacted by the Arkansas Legislature in April 2007, Act 516 has the full title Arkansas Options Counseling for Long-Term Care Program. It requires that long-term care consultation may be provided to: 1) a person admitted to a nursing home 27 See description of the Enhanced Nursing Home Transition Program at on the web at 28 See Topics in Rebalancing, Making Choice Operational, page 29

37 regardless of payment source; 2) a long-term care facility resident who applies for Medicaid; and 3) any individual who requests a long-term care consultation. The consultation will address all of the following: 1) the availability of long-term care options open to that person; 2) sources and methods of public and private payment; 3) factors to consider when choosing among the available programs, services, and benefits, and 40 opportunities and methods for maximizing the independence of the individual, including support services provided by the individual s family, friends, and community. At the end of the consultation, the individual will receive a summary of options. The law implicitly states that even though options for community care provided, the resident is not obliged to leave the facility. The law contains a requirement for the Department of Human Services to develop a formal procedure by which the resident may decline options counseling. This form is to be limited to one page and suitable for reading to the resident. Discussions with the Aging and Adult Services Division provided some background to this legislation. First, the impetus came from AARP, which in itself suggests some wider acceptability of community choice than had it been initiated by the department. Several meetings of the legislative sponsor, AARP, the hospital association, and the Department took place as the bill evolved. Initially, the bill required the counseling to take place before admission to nursing homes for all people, regardless of payment source, but the hospitals were concerned about backlogs in the hospital were that proviso included. The compromise was that nursing homes must notify the Department of admissions within 1 business day of admission. Finally, the nursing home industry weighed in with the opinion that people don t come to nursing homes unless there is no other option, that families have frequently made difficult decisions about placing their loved one in a nursing home, c and that it would be unfair to make them receive counseling if they had explored all options. The opt-out plan was therefore adopted, and the sponsor insisted that the form be read aloud to make sure it wasn t just mixed in with a stack of papers. Residents and families will be able to receive options counseling later if they change their minds. The Division of Aging and Adult Services received 16 positions to implement the counseling: 14 will be for registered nurses. Though the program is just evolving, it is probable that their training will be integrated with that of the other state-employed nurses who do assessments for entry into Medicaid waiver and nursing home programs. A triage system is envisaged to make best use of the counseling option. When this Act is implemented, it will be the first time that Arkansas has been able to have information on privately paying residents. 29 Act 516 is an excellent, recent example of legislatively mandated options counseling that should further community care. Mandated options counseling does not always have the intent of promoting community care. To take a counter-example, in 2005 the Texas Legislature enacted Senate Bill 361, with the caption Relating to provision of information related to programs and services for persons with mental retardation seeking residential services. The bill amended existing law to add: 29 According to an estimate of Herb Sanderson, director of the Division of Aging and Adult Services, if the transition counselors divert 10 residents from nursing homes a month, the program will more than pay for itself. communication, 4/14/2007. Topics in Rebalancing, Making Choice Operational, page 30

38 The Department of Aging and Disability Services shall provide to an individual with mental retardation seeking residential services or to the individual's legally authorized representative a clear explanation of programs and services for which the individual is determined to be eligible, including state schools, community ICF-MRs, waiver services under Section 1915(c) f the federal Social Security Act (42 U.S.C. Section 1396n), community mental retardation services, or other services. The department must offer a state school as an option among the residential services available to an individual who is eligible for those services and who meets the department's criteria for state school admission, regardless of whether other residential services are available to the individual. The department shall endeavor to provide as wide a set of options for residential services as practicable and as are consistent with the individual's service needs. (b) The department shall ensure that the determination of the least restrictive environment is made on an individual basis and that a state school may be determined to be an appropriate least restrictive environment for some individuals. This language was introduced in 2005 to require mental retardation authorities to provide neutral information, including information about institutions. But the 2007 legislature reconsidered this issue and passed a statute requiring that options for community care be presented to persons living in State Schools by individuals who are not employees of the State Schools; the State is contract with organizations to do the options counseling, which takes effect in early Topics in Rebalancing, Making Choice Operational, page 31

39 Conclusions This Topic Paper has addressed ways that States can and do promote Informed Decision- Making for LTSS at junctures when a consumer or the consumers agent is making a choice about a type of HCBS services (home care, residential care, consumer-directed care) or institutional care, making a choice of provider within a particular type of service, or making a choice to leave or stay in an institution where he or she resides. For this topic paper, we overlaid a set of criteria for informed decision-making to occur: that is, the consumer chooses freely among two or more viable choices; the consumer receives accurate, localized information about options and their associated benefits and risks; the consumer is capable of understanding the options; and the consumer weighs the options against personal values and preferences. We did not observe any State that applied this framework to assessing their systems for the way they enhance or detract from informed decision-making. Furthermore, no evaluative data are available at present to test informed decisions by asking the decision-makers about the choices they were considering, whether they felt adequately and accurately informed, whether they were rushed in decision-making, and the logic that brought them to the decision they made. Empirical study of informed decision-making is possible. When States have highly developed person-centered planning and/or consumer-directed service systems, the values of individualized consumer choice becomes enshrined. Even so, the ability of consumers in such systems to make informed decisions at key decision-junctures cannot be assumed unless that consumer has access to accurate information and (as needed) assistance to weigh the pros and cons and risks of each alternatives in the light of their own values. The 8 States in the Rebalancing Research project are all giving conscious attention to making information available with which consumers can make informed decisions. Through Aging and Disability Resource Center funding and other mechanisms, States have developed extensive web and print resources to inform consumers about options, and have made efforts to brand their materials and make them visible. Taking advantage of information technology, several States have developed self-assessment tools that enable the consumers themselves to introduce personal information and get ideas about care plans and local resources. Minnesota has taken this effort further to develop a web-based date-driven structured decision tool, which could be used by consumers alone or by long-term care consultants to help them advise consumers. One test of the ability for consumers to make informed decisions is to consider how and whether consumers are reached for assistance at crisis periods when a change in services is necessary, and whether long-term institutional residents are systematically offered the information and assistance to make choices to leave institutions. Some of the system designs still have no sure way to reach community-dwelling consumers at these critical moments of decision-making. At these times, consumers tend to be under the care of the acute or rehabilitation systems and may not have access to their LTSS advisors or case managers. Also some states have no systematic way of ensuring that all long-stay residents of institutions know about options to move to the community. Topics in Rebalancing, Making Choice Operational, page 32

40 Case management, a function for screening, assessment, care planning, and monitoring, is in the process of re-invention. Terms such as long-term care consultant, options counselor, and systems navigators are being used for parts of or all of the function. This new terminology reflects a strong presumption of the importance of informed consumer decision-making. When case managers are involved as decision intermediaries, the case management is viewed as a consultative rather than prescriptive activity. Texas has been explicit in asserting that consumers have the right to choose risk in their care plans. Special attention is being given to provision of information to persons living in institutions. Detailed training materials are available in some States to assist personnel known as relocation specialists or relocation coordinators in those functions. In Pennsylvania, Area Agencies on Aging are serving as transition counselors, but to do so they have been afforded detailed manuals, and new access to people in nursing homes, and Legislation requiring options counseling was enacted in Arkansas in This has paved the way for the Division of Aging and Adult Services to staff and mount a state-wide program. In the compromise to enacting the legislation, a vehicle had to be developed for current nursing home resident s to give an informed refusal to the options counseling. States increasingly perceive that they should offer information and counseling on choices to privately paying as well as publicly funded consumers; in Minnesota this is perceived as a strategy that will ultimately positively affect the public costs of care. We began this Topic Paper with the intent of answering some key questions in the 8 States. The review suggests there are no simple answers to the questions. By way of conclusion, we offer summary impressions about the answers to each question. Topics in Rebalancing, Making Choice Operational, page 33

41 Question: How and when do potential consumers learn out about various HCBS and institutional service options? Does that differ within a State by specific programs or target populations? Impression. It appears that these rebalancing States are developing ways that potential consumers can learn about HCBS and institutional options early at the time that they begin to raise questions about services, and ways that they learn about options at first application for Medicaid LTSS. Definitely, in-state variation was found in how different target groups of consumers learn about services, but no consistent patterns could be identified. Question: How, if at all, do State web-based approaches assisted with informing consumers of service options? Impression. Web applications are becoming more elaborate and specific, locally relevant, and user-friendly. Several of the 8 states have developed web models for individualized decisionmaking. Web applications have additional potential when used by decision-advisors and as resources linked to telephone information services. Question: What, if any, new models have emerged for helping of consumers or their families become aware of their service options and exercise informed decisions? Impression. Novelty has been found in the use of technology, especially efforts to channel the internet. Some States are planning further applications such as web chat lines, virtual visits to programs and facilities, and the like. At the system level, there is a trend towards models for system navigation and built in annual review of options for people in institutions. Question. What if any barriers can be identified (e.g. attitudinal, logistical, financial) to getting full information to consumers? Impression. One barrier is a continuing concern about risk and safety in LTSS settings, and unwillingness on the part of professionals to permit consumers to take informed risks. Another barrier is a concern among professionals that they may give rise to false expectations if they begin to discuss other options with consumers particularly options to leave institutions. I n rural areas, such as parts of Texas and much of New Mexico, the array of LTSS services may be sparse, and the concerns about risk and false expectations make providers unwilling to discuss community options in those cases. Family members may be reluctant to have their relatives make transitions out of nursing homes (and when applicable) state schools. Keeping information up-to-date at the local level and arranging to have decision advisors available at the right times for face-to-face assistance remains challenging for State systems. Topics in Rebalancing, Making Choice Operational, page 34

42 Appendix: Figures Illustrating Information and Self-Assessment Tools on State Websites Figure A1. Home Page for AR-GetCare Figure A2. Beginning of Self-Assessment Tool in AR-GetCare Figure A3. Example of a Result from Self-Assessment Tool in AR-Get Care Figure A4. Entry to the Vermont Screen Door Figure A5. Beginning of Self-Assessment Tool in Vermont Screen Door Figure A6. Entry into MinnesotaHelpLine Figure A7. Beginning of Plan Profile in Minnesota Decision Tool Figure A8. Washington State Web Resources for Consumers Topics in Rebalancing, Making Choice Operational, page 35

43 Figure A. 1. Home Page for AR-GetCare Topics in Rebalancing, Making Choice Operational, page 36

44 Figure A. 2. Beginning of Self-Assessment Tool in AR-GetCare Topics in Rebalancing, Making Choice Operational, page 37

45 Figure A. 3. Example of a Result from Self-Assessment Tool in AR-Get Care Topics in Rebalancing, Making Choice Operational, page 38

46 Figure A.4. Entry to the Vermont Screen Door Figure A. 5. Beginning of Self-Assessment Tool in Vermont Screen Door Topics in Rebalancing, Making Choice Operational, page 39

47 Figure A. 6. Entry into MinnesotaHelpLine Topics in Rebalancing, Making Choice Operational, page 40

48 Figure A.7. Beginning of Plan Profile in Minnesota Decision Tool Topics in Rebalancing, Making Choice Operational, page 41

49 Figure A.8. Washington State Web Resources for Consumers Topics in Rebalancing, Making Choice Operational, page 42