Below are a list of handouts provided at the National Symposium. Found will be the abstract, introduction, executive summary and/or full report (and a link to another site) depending on the Internet availability or release approval. At the end of each "handout" is information about where a hard copy can be obtained.
LifePlans, Inc., and The Center for Health and
Long-Term Care Research
April 1999
This research was designed to answer current questions surrounding long-term care insurance. It was also designed to provide basic sociodemographic and service utilization profiles for disabled private long-term care insurance policyholders, and to compare such data and findings to the experiences of non-insured disabled community-dwelling elders. Finally, the authors set out to discuss the implications of such findings on the service delivery system as well as on the design of private and public long-term care programs and policies. This was done by interviewing about 700 community-dwelling long-term care insurance claimants receiving benefits under their policies. Also interviewed were their informal caregivers.
| The Executive Summary and Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Andrew I. Batavia
Reprinted from AMERICAN JOURNAL
OF LAW & MEDICINE, Volume 27, Number 1, (2000): pp. 17-43
© 2000 by
American Society of Law, Medicine & Ethics and the Boston University School
of Law. All rights reserved.
The United States is currently entering a period in which the demand for long-term care services is growing at a particularly rapid rate; it is projected that the inflation-adjusted expenditures for long-term care will double between 1993 and 2018. As the population continues to age and become more chronically ill and disabled, the need to expand our long-term care capacity, and the long-term care options available, has become self evident. The question is; HOW WE CAN MEET THIS NEED IN A COST-EFFECTIVE MANNER THAT IS SATISFACTORY TO THE CONSUMER OF SERVICES.
The population of people who need long-term care consists of people who, by virtue of their disabilities (i.e., functional limitations), require significant assistance in basic life activities. Kaye and associates estimate that about 16% of people over age 65 require assistance with their activities of daily living ("ADL"), such as bathing, dressing, and feeding oneself, and/or the instrumental activities of daily living ("IADL"), including household chores, handling money, and shopping. Among the working-age population (ages 18-64), the personal assistance rate rose by 35% during the 1980s to 2.7 percent in 1993. Because both the working-age and elderly disabled populations are growing rapidly, the number of people who require such services is increasing dramatically.
Most people who require long-term care services live in families with very limited income, and receive their personal care under the "informal support model," in which uncompensated services are provided by family members and friends. One study estimates that over 27 million people served as informal caregivers in 1997, providing the economic value of $196 billion in uncompensated services. Such caregivers often must forego economic and personal opportunities due to these responsibilities, and some develop health problems as a result of the physical and emotional burdens. Critics of the informal support model often say that it results in an unhealthy dependence of people with disabilities on family members, and resentment by the family members who are not able to pursue their interests.
The vast majority of funded long-term care services in this country are provided under the "medical model," in which health care workers provide services under the supervision of physicians and nurses. The largest sources of financing for U.S. long-term care are the federal Medicaid program and patient out-of-pocket spending, and the majority of such funding is spent on nursing home and home health services under the medical model. Due to the substantial financial burden imposed on patients who have too many assets to qualify for Medicaid but not enough to pay the enormous costs of institutional long-term care, many of these individuals impoverish themselves until they spend down sufficient assets to become Medicaid-eligible.
One long-term care option that is growing in popularity, particularly among working-age individuals with disabilities and chronic conditions, is consumer-directed personal assistance services under the independent living model of long-term care. Under this model, individuals receive services in their homes from one or more personal assistants who are not trained as health care workers or supervised by health care professionals. Typically, the consumer advertises for assistants in a local newspaper, interviews them, and informs them of the requirements and benefits of the position. The individual receiving the service is considered an autonomous, self-directed consumer (rather than a patient), who hires, trains, supervises and, if necessary, fires his or her personal assistant(s). This independent living model, which gives consumers substantial control over their personal assistance services, may be contrasted with the medical model and the informal support model in which others often control the timing and manner in which services are provided.
Despite significant benefits in terms of consumer autonomy, satisfaction, and improved health and function, the independent living model is not currently available to many individuals who prefer it. This model is used primarily by people with disabilities who are gainfully employed and who pay for the services out-of-pocket, as well as paralyzed veterans and some Medicaid recipients in states that permit payment for long-term care under this model. Most people with disabilities have no choice but to rely entirely on the informal support model or the medical model. In either case, they often have little control of the services upon which they depend.
One powerful legal requirement that is now being used by some individuals with disabilities to gain access to personal assistance services under the independent living model is that long-term care services must be provided in the "most integrated setting appropriate" to the needs of the consumer. This requirement is contained in three federal statutes that impact long-term care in this country--the Developmentally Disabled Assistance and Bill of Rights Act (DDABRA), section 504 of the Rehabilitation Act of 1973 ("the Rehabilitation Act"), and the Americans with Disabilities Act of 1990 (ADA). This article considers these most integrated setting statutory provisions, their interpretation in the Supreme Court decision of Olmstead v. L.C. ex rel. Zimring, and their use as levers for expanding access to consumer-directed long-term care services under the independent living model.
Section II of this article provides further information on the independent living model of long-term care relevant to analyzing how it is affected by most integrated setting requirements. Section III provides background on the Medicaid program and other sponsors of long-term care, including the Medicaid home and community-based waiver program authorized under section 1915(c) of the Social Security Act. Section IV discusses the relationships between the DDABRA, the Rehabilitation Act, and provision of long-term care in the most integrated setting appropriate. Section V considers the ADA and its most integrated setting requirement. Section VI analyzes the Olmstead decision, which has significant implications for long-term care and personal assistance services. Section VII applies the Olmstead decision to other circumstances involving long-term care, including the care of working-age people with physical disabilities who are on Medicaid. Finally, Section VIII presents conclusions on implications of the analysis concerning the independent living model.
| This publication can be purchased from American Society of Law, Medicine & Ethics, 765 Commonwealth Avenue, Suite 1634, Boston, MA 02215, Tel: 617-262-4990, Fax: 617-437-7596, Web site: http://www.aslme.org/order |
Merril Silverstein, University of Southern
California
Tonya M. Parrott, Quinnipiac University
Reprinted from
RESEARCH ON AGING, Volume 23, Number 3, Pages 349-374, May 2001, © 2001
Sage Publications, Inc.
With the aging of the population, families are increasingly likely to confront the caregiving needs of their older parents, grandparents, and other disabled relatives. This analysis uses national survey data to examine the preferences of Americans for public programs that directly assist caregivers in their activities. Respondents were asked whether they agreed or disagreed with the following three policies: directly paying caregivers, granting tax credits to caregivers, and requiring that employers grant time off without pay to caregivers. Although only one-third of respondents agreed with the idea of paying caregivers, more than 70 percent supported tax credits, and almost 60 percent supported time off to caregivers. Multiple regression reveals that current caregivers more strongly support all three policies, even when controlling for demographic factors, resources, values toward family responsibility, and political orientation. The results suggest that public policies that marshal informal services in support of dependent relatives will find greater favor because they enable the altruistic impulses of families to be fulfilled.
| This publication can be purchased from Sage Publications, Inc., 2455 Teller Road, Thousand Oaks, CA 91320, Tel: 800-583-7243, Fax: 800-583-2665, E-Mail: info@sagepub.com, Web site: http://www.sagepub.com |
Donna Wagner, Pamela Nadash and Charles Sabatino
July 1997
This document describes the highlights of the "Autonomy or Abandonment: Changing Perspectives on Delegation Symposium" and the findings of a state survey on delegation undertaken for the symposium. It also gives an overview of the legal and regulatory issues involved in delegation and provides a backdrop of the factors influencing our approach to delegation and in the country today. It is the hope of the staff of the National Institute on Consumer-Directed Long-Term Services and the Planning Committee for the symposium--representatives of stakeholder groups--that the reader finds this document a valuable resource for their own exploration of the increasingly important issues surrounding delegation and our common concern with enhancing the safety, independence, and autonomy of persons with long-term service needs.
| The Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Leslie Foster, Randall Brown, Barbara Carlson, Barbara
Phillips and Jennifer Schore
October 2000
This paper describes the experiences of 194 early clients in the Arkansas Cash and Counseling Demonstration, IndependentChoices. The description is based on the clients’ responses to a telephone survey conducted about nine months after they applied to enter the program and were randomly assigned to the demonstration’s treatment group to receive a monthly cash allowance. After briefly describing the Arkansas project, data and methods used, and client characteristics, this paper discusses client outcomes in four areas: (1) program participation; (2) uses of services, goods, and cash; (3) hiring of caregivers and revision of cash expenditure plans; and (4) satisfaction.
| The Executive Summary and Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Mathematica Policy Research, Inc.
Issue Brief:
Trends in Consumer Choice, December 2000, Number 1
This brief is based on Mathematica's evaluation of Cash and Counseling, a three-state demonstration in' which Medicaid enrollees eligible for personal assistance services and other paid help around the home and community get a monthly cash allowance to purchase these services and related goods, instead of obtaining them through a home care agency. They also receive counseling to help plan their purchases. The three states included in the demonstration are Arkansas, Florida, and New Jersey.
| The Full PDF Report available here, or can be ordered from Mathematica Policy Research, Inc., P.O. Box 2393 Princeton, NJ 08543-2393, Fax: 609-799-0005, E-mail: jallen@mathematica-mpr.com, Web site: http://www.mathematica-mpr.com. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report. |
Pamela Doty, Judith Kasper and Simi
Litvak
Reprinted from The Milbank Quarterly, Volume 74, Number 3,
1996
In this article, the authors compare and contrast alternative approaches to administering programs, financed under the Medicaid personal care services optional (PC Option) benefit, that make attendant services available to low income elderly and disabled persons in need of help with daily living tasks. The analyses address the following issues: (1) By how much do state Medicaid PC Option programs vary in terms of their administrative features that promote greater consumer choice and control or, conversely, in their emphasis on professional oversight and accountability? (2) To what extent have program administrators actively fostered consumer-directed care models? (3) What are the decisionmaking trade-offs in terms of Medicaid PC Option costs per hour of attendant service, coverage for high-need clients, perceived risks to quality, or other liability concerns associated with consumer direction versus professional management of attendant services? (4) To what extent do clients report having greater choice and control over attendant services in some states' Medicaid PC Option programs as compared to others? (5) Does greater client choice and control result in higher client satisfaction with attendant services?
| The Full Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm |
Susan A. Flanagan and Pamela S. Green
October 24,
1997
This final report provides practical advice to state program administrators regarding the implementation of consumer-directed personal assistance service (CD-PAS) programs and intermediary service organizations (ISOs). In particular, Chapters III, V, and VI, taken together, constitute an informal manual of advice from which state program administrators can design optimal CD-PAS programs using ISOs which are based on sound, regulatory principles and well-drafted contracts. Overall, this final report assists state program administrators in designing CD-PAS programs with ISOs that: (a) comply with applicable federal tax and labor laws; (b) make available supportive services that some consumers may want or need; and (c) allow for the application and enforcement of any limitation or restrictions on consumer direction that may be required by state laws and regulations.
| The Executive Summary or Full PDF Report available here, or can be ordered from the HHS Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, DC 20201, Fax: 202-401-7733, E-mail: DALTCP2@osaspe.dhhs.gov, Web site: http://aspe.hhs.gov/daltcp/home.htm. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report. |
Health Care Financing Administration
CFDA
No.93.779, May 17, 2001
The Health Care Financing Administration (HCFA) is inviting proposals from States and others, in partnership with their disability and aging communities, to design and implement effective and enduring improvements in community long term support systems. These systemic changes will be designed to enable children and adults of any age who have a disability or long term illness to:
Four distinct grant solicitations comprise the "Systems Change for Community Living" grants that are the subject of this coordinated invitation. They are:
"Nursing Facility Transitions" grants: HCFA is making available between $10-$14 million to help States transition eligible individuals from nursing facilities to the community. Two types of grants are offered: State Program grants will be made to support State program initiatives; "Independent Living Partnership" grants will be made to selected Independent Living Centers (ILCs) to promote partnerships between ILCs and States to support nursing facility transitions.
"Community-integrated Personal Assistance Services and Supports" grants: Personal assistance is the most frequently used service that enables people with a disability or long term illness to live in the community. Grants totaling $5-$8 million are available to support States' efforts to improve personal assistance services that are consumer-directed or offer maximum individual control.
"Real Choice Systems Change" grants: The goal is to help design and implement effective and enduring improvements in community long term support systems to enable children and adults of any age who have a disability or long term illness to live and participate in their communities. Approximately $41-$43 million is available in direct grants to States.
"National Technical Assistance Exchange for Community Living" grant: This national technical assistance initiative will provide technical assistance, training, and information to States, consumers, families, and other agencies and organizations. Funding for the technical assistance will range from $4-$5 million.
Grant applications will be due in July 2001. We expect all grant awards to be made prior to October 1, 2001. States will have up to 36 months to expend these funds. Grantees are not required to provide a financial match, but a small non-financial recipient contribution from Grantees and/or a third-party "in-kind" contribution is required.
For more details and news about events relevant to these grant invitations, please periodically consult our web site at http://www.hcfa.gov/medicaid/systemschange.
| Timetable | ||
|---|---|---|
| Milestone | Date | Content |
| "New Tools" Letter | January 10 | This letter, addressed to State Medicaid Directors, was intended as an early alert to the new grant opportunities. |
| "Starter Grants" | Announced February 25; Deadline June 1, 2001 | These non-competitive, $50,000 grants available to each State were intended to support consumer task forces, public-private partnerships, and initial planning for the "Systems Change" grants. |
| Grant Solicitations Issued | May | |
| New Opportunities for Community Living: A Systems Change Conference | May 24 and May 25 | This national conference is targeted towards States, consumers, providers, and advocates to share information and ideas on home and community based system initiatives.1 |
| Letter of Intent to Apply Due | June 8, 2001 | |
| Applicant's Teleconference | TBD | Additional information regarding registration for this teleconference will be posted on the HCFA web site at http://www.hcfa.gov/medicaid |
| Application Due Dates - Technical Assistance Exchange - Nursing Facility Transitions - Community PASS - Real Choice Systems Change |
July 16 July 20 July 20 July 20 |
|
| Grant Period Start Date | Prior to October 1, 2001 | |
| 1. Information on this conference was previously distributed through the Home and Community Based Services Resource Network. For additional information go to: http://www.hcbs.org. | ||
| The Full PDF Report available here, or can be ordered from the HHS Centers for Medicare and Medicaid Services (formerly HCFA), Web site: http://hcfa.gov/medicaid/systemschange. You will need a copy of the Acrobat Reader in order to view this Portable Document Format (PDF) report. |
Reprinted from the Quarterly Journal of the American
Society on Aging
Volume 24, Number 3, Fall 2000
Full Journal "Introduction" and introductions/initial sections of each article are included below.
Introduction
Robyn I.
Stone
Over the past decade, researchers and policy makers have begun to pay increasing attention to consumer direction in long-term care. A number of factors, including aggressive advocacy on the part of younger people with disabilities, a growing consumer movement in health and long-term care, concerns about the costs of long-term-care services, and the recent shortage of frontline workers, have contributed to this heightened interest in consumer direction.
I have had a long-standing interest in consumer direction as a researcher and policy maker responsible for aging and long-term-care policy in the U.S. Department of Health and Human Services. I was, therefore, delighted when the Generations editorial board asked me to serve as guest editor for a special issue on this topic. The expert contributors to this issue reflect the broad range of policy, practice, and research perspectives that are critical to our understanding of how consumer direction in long-term care evolved, the opportunities, challenges, and limitations of this approach, and future directions for the financing and delivery of long-term care.
Defining Consumer Direction
As policy makers begin to explore the potential and pitfalls of consumer direction in long-term care, it is critical to provide a clear definition of the concept and to identify the parameters of this approach. Consumer direction in long-term care starts with the premise that individuals with long-term-care needs should be empowered to make decisions about the care they receive, including having primary control over the nature of the services and who, when, and how the services are delivered. Consumer direction also assumes that long-term care is predominantly nonmedical, focused on primarily low-tech services and supports that allow individuals with disabilities to function as independently as possible. Thus, the consumer should not be forced to rely on professionals to make key decisions about care and to be "managed" by a formal system.
Consumer direction is not one strategy. It reflects a continuum of approaches based on the level of decision making, control, and autonomy allowed in a particular situation. The cash model is at one end of the consumer-direction continuum. This approach assumes that people know what they need and how to purchase it. Cash benefits tied to level of need or some other criterion provide the long-term-care consumer with the greatest flexibility in using resources to meet particular needs. The consumer decides how to best use the dollars, including purchasing services from a formal vendor, hiring a next-door neighbor to help with activities of daily living, purchasing some type of assistive technology to enhance independence, or modifying the person's own home to make it possible to remain in the community.
Professionally managed service packages are at the other end of the consumer-direction continuum. Most publicly funded home- and community-based care programs, in which beneficiaries have access to a set of prescribed services, fall into this category. Typically, a professional care manager develops a care plan tailored to the needs of a particular client. Even within this approach, however, there is the potential for consumer direction. The extent of consumer direction is determined by the degree to which the client is proactive in the development and ongoing implementation of the care plan and has some control over other decisions related to service delivery.
Approaches reflecting increasing levels of consumer direction lie between these two extremes. Within some programs with service packages, clients have the discretion to hire and fire their own workers and to decide how and when services will be provided. Some programs allow individuals to hire family members as caregivers. Voucher programs fall short of allowing full client discretion through a true cash model, but within some constraints they do afford long-term-care consumers great flexibility in how and where benefits can be used.
To date, researchers and policy makers have considered consumer direction primarily within the context of homecare. In theory, the cash model provides the consumer with the discretion to purchase services in any setting. In reality, the amount of available dollars limits the purchase of facility-based care. At the same time, it would be a mistake to dismiss the potential of consumer direction in congregate settings. The underlying philosophy of assisted living, for example, requires that the resident have significant decision-making authority. Even in the nursing home, it is possible to provide residents with the opportunity to direct their care.
In defining consumer direction, it is important to note that this concept is related to but is not synonymous with consumer choice. With the advent of managed care and Medicare offering (at least in theory) a range of plans as well as a fee-for-service option, the elderly and younger disabled are facing more choices in how they receive their healthcare. Individuals also have choices in long-term care, although the costs of options such as assisted living or intensive homecare may limit accessibility for low- and moderate-income people and their families. Consumer direction, however, focuses more specifically on the degree to which people are proactive in making the decisions about care, including the hiring and firing of workers and the management and oversight of services. It is most appropriate for meeting nonmedical, personal care and other daily living needs that do not require the training, expertise, and judgment of professionals. Furthermore, because long-term care involves the quality of housing and other living arrangements as well as services, consumer direction has the potential for providing flexibility in the ways these needs can be met.
Policy Environment
Consumer-directed approaches to providing long-term care have gained prominence at both the federal and state levels over the past decade. There is, however, much ambivalence toward this concept, particularly the cash option and models that allow care recipients to pay family and friends as formal caregivers. Americans and their policy-making representatives in Washington and across the states embrace a consumer-directed approach when it is presented in the form of a tax deduction or credit for the purchase of private long-term-care insurance or a tax credit to the care recipient or informal caregiver for direct services purchased privately. Using private mechanisms such as the tax code puts dollars in the pockets of individuals and their families and allows them to use broad discretion in how these funds are used. This private form of consumer direction resonates with the rugged individualism of American capitalism and the public's desire to make their own choices with minimal government interference.
On the other hand, when it comes to public programs and public dollars, there is evidence that the "deserving" and "undeserving" are treated differently. Policy makers, who ostensibly reflect the public's view, have no qualms about allowing individuals to exercise full discretion in how they purchase long-term care in the private sector. They are eager, in fact, to reward them through tax breaks and other financial incentives. The guardians of public long-term-care programs, however, are reluctant to offer consumer-directed options to low-income clients. There is tremendous concern about fraud and abuse, particularly where cash might be offered in lieu of a defined service package. It is assumed that at least a proportion of these individuals and their families would either use the funds for non-long-term-care purchases or would be incapable of making prudent decisions. Many policy makers also express grave concerns about paying family members for services that they should be providing for "free." In addition, much of the opposition to consumer direction emerges from concerns about lack of accountability and the inability to adequately protect long-term-care consumers from physical and emotional harm.
It is interesting to note that many Western European countries have pursued consumer-directed long-term care in the public sector through options ranging from caregiver and disability allowances to cash benefit programs based on social insurance. Concerns about fraud and abuse and accountability have not emerged as major deterrents to implementation in these other industrialized societies.
Despite serious reservation, many state policy-makers in the United States are finding consumer direction increasingly appealing for two reasons. First, there is the potential for cost savings. Most programs with a cash option, for example, discount the actual amount paid to the clients relative to the cost of a comparable service package. Savings are also realized through the reduction in administrative costs that would have been accrued in managing a service-package program. Policy makers are also interested in exploring consumer direction because of the growing shortage of frontline workers to deliver long-term care across all settings. Consumer-directed approaches afford much more flexibility in hiring workers (including relatives and friends), thus expanding the potential pool of caregivers. Finally, policy makers are interested in developing programs that address the preferences of their constituents. Consumer-directed long-term care is viewed as a way to empower consumers, affording them more choice and an increased role in making the decisions that directly affect them.
In This Issue
This issue of Generations provides a broad overview of consumer direction in long-term care, reflecting a range of perspectives from diverse stakeholders. Nancy Eustis sets the context for understanding the development of this approach by providing a brief history of this concept. She describes the evolution of consumer direction from its roots in the independent living and self-determination movements catalyzed by younger people with physical and developmental disabilities. She also highlights the ambivalence of the aging advocacy community toward this model but notes that elements of consumer direction have increasingly been present in aging services (e.g., control and autonomy, self-care).
Marshall Kapp notes that the current paradigm shift toward more consumer choice and control regarding the details of home health and personal assistance services implicates a variety of emerging legal issues. His article pays particular attention to the law's likely impact on quality assurance, consumers' rights, and workers' interests under long-term-care delivery and financing models that emphasize consumer direction. He argues that a movement away from extensive command and control regulation toward more emphasis on the role of consumer direction in a competitive long-term-care marketplace does not reduce the importance of the law in delineating and enforcing rights and responsibilities in this arena.
Pam Doty provides important insights into the federal policy perspective on consumer direction in long-term care. She uses her agency's leadership role in developing the Cash and Counseling Demonstration to illustrate how federal interest in this approach evolved over time and to identify some of the key barriers to adoption of this model. Linda Velgouse and Virginia Dize summarize the findings from their survey of state administrators on consumer-directed home- and community-based services. They also describe the development of a self-assessment tool by the National Association of State Units on Aging. As of this writing, ten states have volunteered to use this tool, which includes six broad categories of consumer direction "benchmarks."
Complementing this overview of state consumer-direction initiatives, Lori Simon-Rusinowitz and colleagues present findings from telephone interviews conducted with policy experts from the aging and disability communities. Kevin Mahoney, Kristin Simone, and Lori Simon-Rusinowitz highlight early implementation lessons from the Cash and Counseling Demonstration and Evaluation (ccde), a multistate project funded by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services. ccde offers Medicaid Personal Assistance Services (pas) users, elderly and younger people with disabilities, a cash allowance and support services as an alternative to traditional agency-delivered pas services. As these researchers note, this large-scale demonstration provides a unique opportunity to assess the best approaches to developing an outreach and enrollment strategy, counseling and fiscal intermediary programs, and a system for quality monitoring.
Lynn Friss Feinberg and Claudia Ellano highlight California's Caregiver Resource Center as a model for promoting consumer direction in an agency-driven program for family caregiver support. They note that consumer direction poses challenges to traditional assumptions held by many practitioners who consider that professional intervention is not only appropriate, but required, based on the client's disability, age, or functional status.
Marisa Scala and Tom Nerney underscore the fact that it is people who are at the heart of the movements toward consumer direction and self-determination. These authors discuss four populations that have been involved in the struggle for consumer direction: older adults, younger adults with physical disabilities, people with developmental disabilities, and those with cognitive disabilities.
Mary Ann Wilner discusses the implications of consumer-direction for the frontline worker--the homecare aide or personal-care attendant who is employed directly by the consumer or the consumer's family. She outlines both the advantages and disadvantages of this model for the paraprofessional worker, including the opportunity for more autonomy and control, but also the potential for exploitation and abuse. In this article, Wilner describes the tensions between the needs and preferences of consumers and workers and reviews the role of mechanisms such as fiscal intermediaries, registries, unions, and public authorities in balancing the needs of the care recipient and the caregiver.
Scott Miyake Geron presents an approach to assuring quality of consumer-directed long-term-care programs that is based on the views of consumers and other consumer-derived quality measures as well as more traditional approaches. He discusses the failure of traditional approaches to assuring quality and notes that consumers define quality differently from professionals and other stakeholders. He also outlines the principal challenges to assuring quality.
Aging is a global phenomenon, and we have a lot to learn from the experiences of other countries that have implemented consumer-directed policies and programs to finance and deliver long-term care. Jane Tilly, Joshua Wiener, and Alison Cuellar analyze the experiences of Germany, Austria, the Netherlands, and France and compare them with selected U.S. programs in California, Colorado, Kansas, Maine, Michigan, Oregon, Washington, and Wisconsin. Based on interviews with researchers and key stakeholders in each country and state and an extensive review of the literature, these authors describe the range of program designs, highlight the experiences of beneficiaries, their family caregivers, and their workers, and review emerging issues related to quality of services and the potential for cost containment.
To help readers understand the potential and pitfalls of consumer-directed long-term care in the real world, this issue showcases a number of programs that have implemented elements of this model. Ted Benjamin and Ruth Matthias briefly summarize findings from their study of California's In-Home Supportive Services program, which is large and well established and offers both agency and consumer-directed services. In the latter mode, the state delegates all responsibilities for recruiting, hiring, training, and supervising their worker to the client, with direct state payment to workers for certified hours of care delivered. Sue Flanagan and Pamela Green describe three fiscal intermediary models that are used to help facilitate consumer direction.
Diane Wong describes a rapid-response worker replacement program being implemented by the public authority operating in Alameda County, California. This function is key to enabling individuals to maintain their selected homecare workers and to avoid unnecessary 911 calls or institutionalization and escalating urgent situations. Kathy Dwyer describes the American Indian Choices Project, which is a self-directed method for developing aging program changes that are consistent with the Americans with Disabilities Act and that are respectful of tribal culture and sovereignty. Ruth Rothbart Mayer, Jean Marks, and Ann Berson describe a consumer-directed assistance program for people with cognitive impairment in New York City.
Conclusion
Consumer-direction in long-term care has become part of the lexicon among state and some federal policy-makers. This approach to financing and delivering long-term care was the focus of much attention at the most recent annual National Conference on Home and Community-Based Services. Policy makers, program directors, and researchers struggled with definitions of this concept and how it is being operationalized in programs serving a diversity of people with disabilities. They debated the advantages and disadvantages of this approach and articulated their concerns about consumer and worker protection, quality of care, and accountability. Clearly, consumer direction is not an option for all people with long-term-care needs, but it may prove to be an effective and efficient way to allocate precious resources to an important subset of this population. Although little empirical research has tested the perspectives of stakeholders who support or oppose this model, forthcoming findings from the Cash and Counseling Demonstration and other studies as well as the implementation experiences of ongoing programs may help guide the direction and magnitude of this emerging trend.
Consumer-Directed Long-Term-Care
Services: Evolving Perspectives and Alliances
Nancy N. Eustis
(INTRO ONLY)
Young adults with physical disabilities, people of all ages with cognitive impairments, and older people with functional impairments share many of the same needs for services and adaptations. However, the professionals and advocates that have traditionally been aligned with each of these groups have different histories and styles of addressing those needs. They typically differ regarding what they mean when they refer to "consumer direction" and how consumer-directed services should be implemented. For purposes of this essay, consumer direction is defined as choice of services and provider as well as control over how services are provided.
Consumer Direction in Long-Term
Care: A Taxonomy of Legal Issues
Marshall B. Kapp
(INTRO ONLY)
The activities of home health agencies are highly regulated, primarily for the purposes of assuring that the quality of services the agencies provide meets defined minimum levels and protects the rights and interests of service consumers and agency employees. This regulation takes a panoply of forms, including the following: state licensure of agencies and the individual professionals whom agencies employ or with whom they contract; federal Medicare and Medicaid Conditions of Participation, 42 C.F.R. Part 484 and 42 C.F.R. § 440.70(d); peer review organization assessment of compliance with professionally recognized standards of care; tort litigation seeking financial recovery for alleged injury directly caused by professional malpractice; and antifraud and abuse, antitrust, and other laws attempting to control the amount and propriety of financial payments made to home health agencies.
As described in this issue of Generations, various alternative models are evolving in the United States (and elsewhere) seeking to maximize the extent of consumer involvement in formulating and implementing publicly funded long-term-care plans. Under these models, the consumer (or the consumer's surrogate decision maker) may choose to purchase specific healthcare components of an individualized service plan from formal home health agencies or may utilize independent service providers to satisfy healthcare or personal-care needs.
The paradigm shift away from the traditional, highly regulated agency model of publicly supported long-term care toward delivery and financing models within which the consumer is empowered to control the who, what, where, when, and how details of the service plan creates new sets of relationships and raises many new legal concerns about the respective rights and responsibilities of the parties to those relationships. This article presents a brief taxonomy of some of the most salient of these evolving issues.
The Federal Role in the Move Toward
Consumer Direction
Pamela Doty
(INTRO ONLY)
Since the early 1990s, the Office of Disability, Aging, and Long-Term Care Policy (DALTCP), a division of the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services (DHHS), has made consumer direction in long-term care a major focal point of our policy research agenda. The largest and most visible of its research initiatives on consumer-directed services is the Cash and Counseling Demonstration and Evaluation, a large-scale social experiment designed to explore the possibilities and test the limits of consumer direction in publicly funded (Medicaid) home and community-based services programs. Mahoney and colleagues describe this project in detail in this issue. This article is intended to provide historical perspective on the federal government's involvement in the Cash and Counseling Demonstration and Evaluation as an example of the federal role in consumer direction. Specifically, the article describes how previous research and analysis led to DALTCP's interest in sponsoring this social experiment and shaped our thinking about is purpose and design.
The immediate antecedents of Cash and Counseling can be found in the long-term-care proposals included in President Clinton's 1993 Health Care Reform Plan. However, in a deeper sense, understanding where the idea came from requires situating this project in the context of a research tradition that includes previous and ongoing federally sponsored research on "consumer-direction," interest in learning from foreign models of providing publicly funded home- and community-based services, and reflection on the lessons learned from previous social experiments focusing on home- and community-based "alternatives to institutional care," in particular, the Channeling Demonstration.
Although Cash and Counseling is the centerpiece of DALTCP's research agenda on consumer direction, the project is not ours alone. The design and implementation of the demonstration and its controlled experimental design evaluation would have been impossible had DALTCP, a small research and policy analysis office with limited resources, not been able to enter into and sustain a complex partnership involving a major private philanthropy, multiple federal agencies both within and outside to the Department of Health and Human Services, several states (and multiple agencies within each of those states), two universities, an independent research organization, a major national advocacy group, as well as numerous private consultants.
It is particularly important to acknowledge the key role of the Robert Wood Johnson Foundation in joining us to sponsor Cash and Counseling as well as the RWJF's sponsorship of related research and demonstration projects that have influenced the experiment. Certainly, without the foundation's financial support, there would be no Cash and Counseling Demonstration and Evaluation. Although DALTCP is a cofunder with the RWJF of the rigorous scientific evaluation, the RWJF has provided all of the funding for the demonstration itself; that is, the planning and implementation grants to the participating states as well as funding for oversight, coordination, and technical assistance provided by or through the national program office for Cash and Counseling at the University of Maryland Center on Aging. Kevin Mahoney, national program office director, and Lori Simon-Rusinowitz, deputy director, have provided indispensable day-to-day leadership. We also appreciate the willingness of four states, Arkansas, New York, New Jersey, and Florida, to participate as demonstration sites. Although New York was unable to continue, Arkansas, New Jersey, and Florida have gone the distance from planning to implementation; indeed, Arkansas is approaching completion of the evaluation phase of its demonstration (December 31, 2000).
The cooperation of several other federal agencies in granting "research and demonstration" waivers or exemptions to laws and regulations applying to Medicaid, Supplemental Security Income (SSI), Food Stamps, and other means-tested government benefits also merits recognition. The Health Care Financing Administration approved Medicaid waivers under Section 1115 of the Social Security Act. Waivers were required to permit Medicaid funds that otherwise would have purchased personal care services under the Medicaid state plan (New Jersey, Arkansas) or 1915(c) home- and community-based services (Florida) to be paid out as monthly cash allowances available to beneficiaries instead of as reimbursements to service providers. These "1115" waivers were also necessary to permit Medicaid beneficiaries to use their cash benefits to purchase disability-related goods and services not otherwise covered under Medicaid and to suspend the prohibitions against certain family members (spouses and parents of minor children, whose income and assets are deemed available to Medicaid beneficiaries for purposes of financial eligibility determinations) being paid caregivers.
The Social Security Administration and the U.S. Department of Agriculture also agreed to exempt participants in the treatment group from rules related to means-testing that might otherwise have jeopardized treatment group members' eligibility for cash assistance (SSI) payments and Food Stamps. Both agencies have statutory authority to relax these rules in the interests of research, contingent on impact analyses being performed. Although both agencies were highly willing to cooperate, some time-consuming, detailed work was required to decide exactly what types of information the evaluation needed to collect to determine the demonstration's impact on recipients of SSI and Food Stamps. Less formalized understandings were also reached with the Department of Housing and Urban Development (HUD) and the Department of Education to ensure that cash benefits for disability-related services provided under the Cash and Counseling Demonstration would not adversely affect recipients otherwise eligible for low-income housing or income-related educational and vocational rehabilitation benefits.
In sum, policy research involving social experimentation on a large scale requires a considerable investment not only of finances but in team building and teamwork. Leadership and management of the Cash and Counseling Demonstration and Evaluation--which also has been a team enterprise--require holding firm to the original goals of the research and protecting the scientific integrity of its design and methodology while also negotiating for the project's survival and successful implementation within a socio-political-economic environment that is in constant flux.
A Review of State Initiatives
in Consumer-Directed Long-Term Care
Linda Velgouse and Virginia
Dize
(INTRO ONLY)
Starting with the independent living movement of the seventies, consumer direction has gained momentum among consumers, providers, state administrators, and policy makers. The advantages of consumer direction, which include increased satisfaction and quality of life for consumers, are become widely accepted. But while the number of state initiatives and consumer-directed programs has increased, they continue to be a small part of the long-term-care service system, and they remain varied in size, services offered, populations served, and the degree of control provided to consumers.
The differences among programs result at least partially from the range of options encompassed by consumer direction. By definition, consumer direction includes a continuum that ranges from consumers having a role in developing their plan of care to having complete control over services, choice of providers, and payment for services. Differences also stem from the varied levels of commitment and understanding by those who must implement these new programs and from the barriers to consumer direction inherent in the long-term-care service system. These barriers are primarily programmatic, regulatory, and attitudinal--the last of which is most common in aging services.
The National Council on the Aging (NCOA), a national membership organization, is among those who have worked to advance consumer direction. NCOA has developed a definition of consumer direction and criteria for assessing the level of consumer direction offered by programs, collected information on consumer-directed programs, and managed research and demonstration projects. This article reports on NCOA's two most recent efforts to advance consumer direction: findings from the Survey of State Administrators on Consumer-Directed Home and Community-Based Services, and the state initiatives affiliated with the Independent Choices Program.
Implementation Issues for
Consumer-Directed Programs: A Survey of Policy Experts
Lori
Simon-Rusinowitz, Anne Marie Bochmiak, Kevin J. Mahoney, Lori N. Marks and
Dunya Hecht
(INTRO ONLY)
The aging community's approach to homecare services has been changing during the past decade. While many long-term services for older people remain traditional in nature (i.e., arranged for consumers by professionals with minimal consumer input), an increasing number of community providers and consumers of long-term care support more consumer control and choice within service delivery. This consumer-directed approach to providing homecare services has been spearheaded by the disability community, which refers to these services as personal assistance services.
While many older people might benefit from consumer-directed services, researchers have limited knowledge about implementing such programs for elders. Researchers have only recently begun to address such questions as how many older consumers would prefer consumer-directed services and what consumer characteristics would lead to a choice for more autonomy. These researchers surveyed personal-care consumers to determine their preferences for "cash and counseling," a consumer-directed option that offers a cash allowance and information services to people with disabilities. The cash allowance enables consumers to purchase needed services and products that help maintain their independence. The survey showed that a sizable number of older consumers were interested in this consumer-directed choice, although interest was higher among younger consumers.
As interest in consumer-directed services grows, many additional questions need answers regarding how to adapt a consumer-directed approach to homecare services for older people. This article presents findings from telephone interviews conducted with twenty policy experts from the aging and disability communities. The purpose of the study was to assess implementation issues that arise when adopting a consumer-directed approach to aging services and to inform the design of the Cash and Counseling Demonstration and Evaluation (CCDE), an ongoing demonstration of a consumer-directed program offering a cash benefit (see Mahoney, Simone, and Simon-Rusinowitz, this issue, for a detailed description of the project).
Our research questions attempted to assess interest in adopting a consumer-directed approach to service delivery for the elderly community and to address implementation issues as they relate to consumers, providers, payers, and policy makers. We asked policy experts to address several issues: Do older consumers desire this type of service, and are their wants and needs different from those of their younger counterparts? If so, how? Do older consumers want to become employers of their personal attendants, charged with the responsibilities of hiring, training, managing, and paying their employees? Are these preferences related to age or other consumer characteristics (e.g., degree and type of disability)? How can consumer-directed programs balance the sometimes conflicting goals of maximum consumer independence, quality assurance, and accountability for public funds? How do providers accustomed to being in charge make a shift to consumer direction? In order to facilitate future innovations in healthcare, it is important to examine the key issues in introducing consumer-directed principles into healthcare programs for the aging and disability communities.
The following sections summarize the experts' views about implementing consumer-directed programs and barriers to implementation from four perspectives: those of consumers, providers, payers, and policy makers. We conducted twenty in-depth telephone interviews (averaging seventy-six minutes in length) with policy experts from the aging and disability communities, including program administrators and leaders in home- and community-based services. Their affiliations included universities, federal and state government, non-university research settings, national associations, private consultants, a private foundation, and a health insurance company. The interviews took place over a period of one year, from September 1996 through August 1997.
Early Lessons from the Cash and
Counseling Demonstration and Evaluation
Kevin J. Mahoney, Kristin
Simone and Lori Simon-Rusinowitz
(INTRO ONLY)
Today, in most states, whether you are an elderly individual or a younger person with disabilities, if you are covered by Medicaid and need assistance to perform major activities of daily living like bathing, dressing, using the toilet, transferring from one place to another, or eating, you will not have much say over who helps you or when they come--never mind what they actually do. For years, people with disabilities have been saying, "If I had more control over my services, my quality of life would improve, and I could meet my needs for the same amount of money or less." The project described in this article is, at its heart, a policy-driven evaluation of this conviction. The Cash and Counseling Demonstration and Evaluation, funded by the Robert Wood Johnson Foundation (RWFJ) and the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services, provides a test of one of the most unfettered forms of consumer direction, offering consumers a cash allowance in lieu of agency-delivered services.
Promoting Consumer Direction
for Family Caregiver Support: An Agency-Driven Model
Lynn Friss
Feinberg and Claudia Ellano
(INTRO ONLY)
You probably know someone like Judy Smith, She is 53, married, has two teenage children at home, and has a career as an architect. A year ago, her widowed mother moved into her home after being diagnosed with Parkinson's disease and dementia. At that time, Judy was forced to give up a challenging project in her firm because it would have required her to travel three days a month. Since her mother needed constant care, Judy was no longer able to attend business meetings at night; her days and nights were very demanding and stressful for her and her family because of her caregiving role. She was becoming increasingly exhausted and took an unpaid leave of absence from her job, resulting in considerable financial hardship to her family. Her mother's physician suggested that Judy consider placing her mother in a nursing home--not what she or her mother wanted. The prospect was heartwrenching and an economic nightmare. Fortunately, a friend told her about a Caregiver Resource Center in her community. Over the next four months, the center's family consultant provided Judy with information about the course of the disease and behavior management strategies, arranged for a family meeting to discuss care options, set up a legal consultation with an attorney to consider powers of attorney and other legal matters, held six counseling sessions with Judy to deal with her frustration, confusion, and sense of loss, and offered her several respite care options to consider. Judy elected respite assistance whereby financial support from the Caregiver Resource Center enabled her mother to attend an adult daycare program four days a week. A family friend provided respite relief on Fridays. With this support and respite assistance, Judy was able to return to work and continue caring for her mother at home. She now has more knowledge about Parkinson's disease and dementia, feels more confident in her caregiving role, is better able to deal with her mother's behavioral and functional problems, and is grateful for the respite relief and financial assistance to offset the costs of care. She keeps in touch with the center's family consultant as problems arise or decisions need to be made.
People First: The Consumers in
Consumer Direction
Marisa A. Scala and Tom Nerney
(INTRO ONLY)
Much of the discussion of consumer direction and self-determination focuses on issues, models, and policies. Consumer direction as a philosophy emphasizes consumers' capacity to "assess their own needs, determine how and by whom these needs should be met, and monitor the quality of services they receive." As a practice, consumer-direction consists of consumers making decisions and managing delivery of long-term-care services. Self-determination represents a much broader concept related to individuals' overall control of their lives and ability to participate fully in society and rests on four basic principles: (1) freedom to exercise the same rights as other citizens, (2) authority to control the funding needed for services and support, (3) support through the organization of resources as determined by the person with the disability, and (4) responsibility to use public dollars wisely.
However, at the heart of the movements toward consumer direction and self-determination are, of course, people--the individuals with disabilities who are directing and receiving services and support. In this article, we will discuss four populations that have been involved in the struggle toward consumer direction: older adults, younger adults with physical disabilities, people with developmental disabilities, and those with cognitive disabilities. We will focus on the history of each group in the area of consumer direction, strategies, and supports needed to enhance consumer direction in each community, and special issues to consider for each population.
Toward a Stable and Experienced
Caregiving Workforce
Mary Ann Wilner
(INTRO ONLY)
Recently, my mother received an early morning phone call from her friend, Elaine, who suffers from multiple sclerosis. On this particular morning, Elaine was desperate to find someone to help her get out of bed because her regular homecare worker had unexpectedly cancelled. My mother, almost 78, does not walk well, following a hip fracture, and considers herself fortunate to have found someone to help her with household chores one-half day a week. This woman, Jeanette, a 46-year-old widow from western Africa, came to the United States to live with a brother and find work to support her children back home. One of her children has mental retardation. My mother asked Jeanette if she would be willing to fill in for Elaine's homecare worker for the day. Jeanette confided to my mother her fears that she would harm Elaine, since she did not know how to assist her, that she would end up at the police station if she did harm her, and further, that she might injure herself. Still, she agreed, but she did injure herself trying to help Elaine get out of bed. As a result, Jeanette lost several days of work.
This is not an unusual scenario, and it illustrates many of the complex, interrelated dynamics that make up the business and personal relationships between consumers and paid independent providers who are hired either through the private marketplace or government-subsidized programs. Vulnerable consumers struggle to find reliable caregivers, while compassionate and caring workers lack the support and training they need to provide the quality care consumers deserve. This article addresses the reasons that it is increasingly difficult for consumers to find available and competent workers and the conditions under which many workers are employed in today's homecare market and provides an explanation of several mechanisms that are being used to mediate the needs and desires of workers and consumers.
The Quality of Consumer-Directed
Long-Term Care
Scott Miyake Geron
(INTRO ONLY)
With most of the purchases that people make or the activities they choose to engage in, we do not worry about the quality of those products or services--that's their own business. We leave it to them to decide whether the car that they drive is safe enough, the home that they live in is clean enough, or the food that they eat is healthy enough. The choices people make are an endless source of gossip and commentary, but most acknowledge that people have the right to make those choices.
The fact that we raise the issue of quality in consumer-directed long-term care highlights what is both obvious and unique about long-term care--that adult users of these services have chronic functional limitations, and those with cognitive impairments are often very different from the apocryphal autonomous, well-informed decision makers assumed by economists and libertarians. Even when a person is assuredly compes mentes but only requires long-term care because of physical disability, the issue of quality emerges, although typically as a poor relation to payer concerns about accountability. The public has maintained an interest in the effectiveness and quality of services because of the high costs of publicly supported homecare, concerns about the safety of consumers, and the potential risks of legal liability.
The philosophy of allowing people to have control and autonomy over their own lives and respecting the choices that people make is not new--it is consistent with basic humanistic values that have been articulated in cultures all over the world for hundreds of years. These ideas have been acknowledged for a long time in the "helping professions" such as social work and nursing, and resonate in the ideas of consumer involvement in services and treatment programs in the case management and homecare literature (e.g., Geron and Chassler, 1994).
But it is also true that consumer-directed care is a reaction to decades of care provided according to the dictates of professionals, with the views of consumers rarely addressed or considered. As consumers, patients, or clients, most of us have experienced the "know-it-all" smugness of bureaucrats and the tyranny of professionals who did not take our views seriously. The advocacy of the independent living movement and other disabled-rights advocates (Batavia, DeJung, and McKnew, 1991) in the United States; positive reports from longstanding programs of direct payment to consumers in France, the Netherlands, Germany, and Austria (Tilly, 1999); and newer demonstrations and state programs in the United States and England (Glendinning et al., 2000) have crystallized these arguments in long-term care, and have brought about a significant rethinking of professional approaches to care for adults with disabilities living in the community.
This article presents an approach to assuring the quality of consumer-directed long-term-care programs that is based primarily on the views of consumers and secondarily on other consumer-derived quality measures, as well as more traditional approaches. The reasons for reliance on this new, consumer-oriented approach are as follows: (1) traditional approaches to quality assurance based on standards set by professionals have not worked in long-term care; (2) consumers define quality differently compared to professionals, caregivers, or other stakeholders; and (3) when consumers are given the opportunity to set their own standards of quality for the types of care that they know best--the nonmedical services such as homecare and personal care--they are more satisfied and achieve better outcomes. Quality assurance approaches based on these principles will not diminish quality concerns about these services, but will change their focus. Quality will still need to be measured according to criteria established by professionals, but these criteria should become subservient to consumer-derived measures of quality. Professionally derived criteria should be reserved primarily for instances in which consumers cannot speak for themselves and where there is no reliable proxy to represent their interests, for "high tech" medical situations in which consumers cannot be expected to have the technical knowledge to judge the appropriateness or quality of care, and to set minimum standards of care.
Consumer-Directed Home- and
Community-Based Services Program in Five Countries: Policy Issues for Older
People and Government
Jane Tilly, Joshua M. Wiener and Alison Evans
Cuellar
(INTRO ONLY)
A major innovation in long-term care for older people in the United States and Europe is the development of consumer-directed homecare programs. With government funds, these programs give consumers, rather than homecare agencies, control over who provides services and how these services are delivered. Typically, consumer-directed programs allow the consumer to hire, train, supervise, and fire the homecare worker. In some programs, beneficiaries receive cash payments enabling them to purchase the services they want. In contrast, traditional homecare programs rely on public or private agencies to supply and supervise the workers who serve program beneficiaries.
The empowerment philosophy undergirding consumer-directed homecare has been slow to take hold among programs serving older people because of concerns about whether older people either want to direct or are capable of directing their own services. How to assure quality of care without agency oversight and accountability also has been a major concern.
This article analyzes the development, design, and experience of consumer-directed homecare programs in Austria, Germany, France, the Netherlands, and the United States. The U.S. states included in this study are California, Colorado, Kansas, Maine, Michigan, Oregon, Washington, and Wisconsin. In all of these countries or states, older people can and do participate in consumer-directed programs.
Information for this article comes from two sources. First, we review available quantitative research on program outcomes for beneficiaries, their caregivers, workers, and quality of services from each country. The French and Dutch studies report on demonstration projects that preceded implementation of national programs. Two other Dutch studies surveyed beneficiaries and workers about their experiences several years after implementation of the new national program. Similar surveys of program beneficiaries come from Austria, Germany, and the United States.
Second, we conducted interviews with representatives of government, beneficiaries, unions, and homecare agencies in each country. In total, forty-seven sets of interviews were conducted with government officials and key stakeholders: fourteen with government officials, ten with advocates for younger people with disabilities, six with advocates for older people, ten with homecare agency association staff, and seven with union officials. We asked the people interviewed to share their views of how consumer-directed programs worked in their countries or states.
Comparing Consumer- and
Agency-Directed Models: California's In-Home Supportive Services
Program
A.E. Benjamin and Ruth E. Matthias
(INTRO ONLY)
Until recently, there has been little research to inform the debate about expanding consumer direction to the elderly and other populations with supportive services needs. Most paid supportive services at home are provided by homecare agencies. Critics of this agency approach argue that clients themselves should be organizing and directing their own home-based services, which are personal and mostly nonmedical and thus amenable to individualized design. This article describes a study funded by the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services that was designed to examine the experiences of clients and providers under different supportive-service arrangements in the home. The study compares service experiences and outcomes for clients in a traditional homecare-agency model with those in a consumer-directed model. The locus of the study is California's In-Home Supportive Services (IHSS) program, a large and well-established program that offers both agency-based and consumer-directed services.
Rapid Response: Development of a
Homecare Worker Replacement Service
Diane Wong
(INTRO ONLY)
Mrs. Y is a 72-year-old woman who lives alone and has limited vision because of her diabetes. One morning Mrs. Y's regularly scheduled homecare worker does not arrive. Mrs. Y becomes concerned because she requires meals and snacks at specific times, and she has not been bathed in a few days. Mrs. Y calls Rapid Response, and a homecare worker arrives within one hour. She discusses with Mrs. Y the tasks that need to be accomplished and proceeds to prepare Mrs. Y's meals, assists with bathing, and picks up needed groceries.
Ms. K has an amputated right leg, the result of an accident. She now lives with a roommate. At 4 a.m., Ms. K attempts to go to the bathroom but becomes trapped between her bed rails. Her roommate is unable to free her, so calls Rapid Response. A Rapid Response homecare worker works with Ms. K and the roommate to free Ms. K from the bed. After calming Ms. K, the homecare worker proceeds to provide personal care, changes the bedding, and does the laundry.
Culturally Appropriate
Consumer-Directed Care: The American Indian Choices Project
Kathy
Dwyer
(INTRO ONLY)
In healthcare and long-term care, American-Indian elders may be among the most neglected and underserved populations in the United States. They face the same health-related problems as the general population, but for them these problems are often magnified by such factors as a longstanding lack of tribal health services--particularly in remote locations--cultural tensions, and lack of information. Of the 2.41 million American Indians, nearly 170,000 are 55 years of age and older. Most do live in remote areas, on one of approximately 275 tribal land areas with populations of less than 10,000 people.
Many have had little formal education, and most live well below the poverty level. According to a recent report by the National Indian Council on Aging, Social Security constitutes the only source of income for 30.2 percent of American Indian elders. Moreover, many elders speak English only as a second language, if at all. This, plus a basic distrust of nontribal agencies and professionals, based on a history of broken promises and treaties, causes many elders to avoid seeking basic services to which they are entitled.
Fiscal Intermediaries: Reducing
the Burden of Consumer-Directed Support
Susan A. Flanagan and Pamela
S. Green
(INTRO ONLY)
Consumer-directed modes of financing and delivering home- and community-based support services permit consumers--as opposed to medical or social work professionals--to exercise greater control over the services they receive. These modes allow consumers a broader choice of the providers who can render these services and afford the option of being the employer of record of their support service workers. The programs are popular with consumers, and the number of states that have implemented them has grown significantly over the past decade. However, with increased choice and control come increased responsibilities arising from a myriad of state and federal statutes and regulations governing the employer-employee relationship. As the employer of record in many of these programs, the consumer may be responsible for a broad range of tasks, including (1) recruiting, hiring, and training service workers, (2) defining workers' duties and work schedules, (3) supervising workers as to how specific tasks are to be performed, (4) managing payroll, and (5) disciplining and discharging workers as necessary.
Consumers enrolled in consumer-directed support service programs report that managing employment taxes and preparing and issuing payroll checks is one of the most daunting tasks they perform as employer of record and is the task with which they would most like assistance. Initially, state program administrators and consumers attempted to reduce the employer-related burdens associated with these programs by classifying support service workers as independent contractors. This approach failed because the Internal Revenue Service and the U.S. Department of Labor view most support service workers as household employees. The employer of such workers must pay them and report employment and other taxes associated with such employment in accordance with IRS and Department of Labor rules and regulations. Because of these difficulties, fiscal intermediaries of various kinds have emerged in the marketplace over the past decade to assist individuals enrolled in consumer-directed support service programs.
A Consumer-Directed Homecare
Program that Works for the Cognitively Impaired
Ruth Rothhart Mayer,
Ann Berson and Jean Marks
(INTRO ONLY)
In 1997, the New York City Chapter of the Alzheimer's Association received a three-year grant from the Robert Wood Johnson Foundation to investigate areas of concern and issues facing those caring for an individual with cognitive impairment within consumer-directed homecare. The overall goal of the program was to demonstrate that consumer-directed care is a suitable care option for people with Alzheimer's disease and their designated caregivers. Although a great deal is understood about consumer-directed homecare for people with physical disabilities, little knowledge exists about the needs of the cognitively impaired individual. The project hoped to address this knowledge gap.
| This publication can be purchased from American Society on Aging, 833 Market Street, Suite 511, San Francisco, CA 94103-1824, Tel: 800-537-9728, Fax: 415-974-0300, E-mail: info@asaging.org, Web site: www.generationsjournal.org |
Topeka Independent Living Resource
Center
1997
Your daughter probably only wants what's best for you. What she hasn't heard is the good news in our state about what's called attendant services.
Attendant services are most of what people get in nursing homes. The new thing that's happened here in Kansas is that attendant services can be available to people in their own homes. People don't have to go to a nursing home any more to get help with the things they do when they live on their own.
Your daughter maybe sees that you need assistance with one or more of the ordinary things people do every day--things like getting dressed, going to the toilet, bathing, eating, getting in and out of bed, paying bills on time, remembering to take your medications, keeping up with housework.
Many people used to go to nursing homes for help like that. Other people had to move in with their families for the same reason.
Today attendant services can be provided in your home by someone who does that for a living, a personal attendant. The attendant answers to you and does things the way you want them done--and always in private.
We don't charge you for anything we do. Our services are paid for by the Medicaid program in Kansas.
TILRC stands for Topeka Independent Living Resource Center. We pronounce it Till-Rick. We're a non-profit group, mostly funded by the state and federal governments. The majority of folks who work here are people who have disabilities themselves. They advocate for and provide services to other people with disabilities.
We do lots of different things at TILRC, but one of the most important to us is to help people stay independent and still get the assistance they need.
We help people apply for Medicaid to pay for attendant services directed by the people who use them. We're proud to be able to say that TILRC worked with Kansas government to make this choice available to people in the first place.
Call your county S.R.S. office, or the Area Agency on Aging. They'll probably tell you what we already know: TILRC has a pretty good reputation for doing what we say we'll do.
Or call us directly. We'll be happy to meet with you, hear about the specifics of your situation, and answer you questions the best we can. Although what we do is fairly complicated, it's not technical.
We work with people all over the state and even beyond. If you're in the Topeka area, you're welcome to come into our offices. But we'd he happy to come to where you are and meet with you. Just say when.
Maybe you're living in a nursing home, or with a relative, and you'd like to have your own place the way you used to. Or maybe you'd like to move in with somebody you know. If you want any of those things, we can make it happen.
Some people we work for don't have a thing of their own left in the world, not a knife or a fork or kitchen table, not a set of sheets or a bed to put them on. Almost everybody has to start out on their own once in life, and some of us have had to do it twice. It takes a lot of figuring out, but we'll be working with you. You won't have to do it alone.
We have some storage lockers where we keep the furniture it takes to get a household started up again. People and companies donate things to us for just this reason. Most of the time, it's not brand new stuff. It's more the kind of thing people get when they first go out on their own. But once you pick it, it's yours. You own it.
We connect people with housing too, whether it's a private home or apartment or a government-subsidized building. We listen to what you'd like, then set things up so you can look over the alternatives and choose for yourself where you want to live.
You and your relatives are probably worried about very real stuff like what if it's late at night and you can't get into bed by yourself and your attendant doesn't show up?
Everybody needs backup in those situations. Attendant services can be worked out so that you always have backup.
What if the person working as your personal attendant is somebody that you just don't trust?
In the attendant services program we run, you're the boss. You choose the attendant who works for you. (It can be anyone you want--as long as you aren't married to them. That part is a Medicaid law.) You could hire a friend or a neighbor or even a relative to get paid for doing your attendant services.
If you don't know anyone for the job, you could run an ad or we can give you a list of people you might want to interview. But always you get to choose who works for you.
After you hire somebody, if they don't work out the way you hoped, we'll help you change. You are in charge.
Another what if: What if you're like that woman in the commercial and you fall but you can't get up? Everybody needs to be able to communicate in case of an emergency. Some people depend on portable phones. Other people use a gadget called Lifeline that calls a control center where people are on duty 24 hours a day to help. Other people work out signals with their neighbors. We can let you know the alternatives. You pick what works best for you.
With all respect, we think its fair for you to tell your family--or whoever else wants to make decisions for you--that this is your life and you make your own choices. They wouldn't let you run their lives, would they?
It's a dignity thing, and we understand a little something about that. The people of TILRC are people with disabilities. It always seems like once you have a disability, people just naturally start telling you want to do.
The people at TILRC believe that even if we need a little help, nobody but us can make our choices. Here's what we're getting at: You are the number one all-time best-respected expert on what you want and need.
It's the principle of the thing. We make sure people follow that simple principle when they deal with us. You might want to do the same.
Whether you need grab bars by the toilet or a ramp up to your door or a chair in your shower or a wider door to your bedroom, we can help get it in place for you. TILRC people are people with disabilities who work on accessibility issues all the time.
This is the part that's kind of technical: People who are hard of hearing can get a light that flashes when the doorbell rings. People sometimes need computers they can use to talk out loud. We're pretty familiar with lots of those kinds of things. Sometimes we can help people get wheelchairs and walkers and automatic-opening doors. We help people get tape recorders and talking books. When people need help breathing, we help them get portable respirators and backup generators.
We know about Hoyer lifts and ostomy bags and dialysis and orthopedic braces and none of it is any big deal to us. It's normal to us because we deal with it every day of the week.
Whether you need what they call "assistive devices" or "home modifications" or both, we probably know what program will help pay for it so that independence works out for you.
If you're living in a nursing home now, your Social Security check goes to the nursing home and you get about $30 of it to spend every month. When you live on your own, you get to keep the whole check. The minimum Social Security check is about $480.
Granted, that's not a lot of money. But we know people who are living real well out in the community on that little bit. We will help you set up a life in the community that you can afford.
Thanks to what computers can do these days, you can get your bills paid directly out of your account without writing checks. We can help you set that up. We can also set up direct deposit of your social security check so you don't have to stand in line at the bank every month.
Nothing you tell the TILRC person who works with you is anybody else's business. That's confidentiality. It's the law and we guarantee we will abide by it.
We don't write reports about you or assess you or chart your progress or talk about you to anybody else without your permission. We don't do anything about you without you.
It takes a lot of paperwork, dealing with government agencies the way we do to get things that people need. So yes, we'll have a file with all your paperwork in it. But nobody gets into that file without your permission. And nothing gets put into your file that you don't know about.
There may be things you want us to talk about with your doctor or your son or your landlady. If you ever do have a situation like that, we have a paper you can sign where you give us permission to talk to just that one person about that just one thing just that one time. We're very strict about not even talking to each other about you without your permission.
We promise this because we're the same way ourselves: what's private is private and it stays that way. Period.
If you truly want to live on your own, we can make that happen. You don't have to do it alone. And, like anybody else on earth, you have the right to change your mind about what you want.
Sometimes people stay in touch with us for a long time after we get them set up. Sometimes people say goodbye on the day they get where they're going and they don't call again until something new happens.
Any way you do it is fine with us. We're here and we'll be here if you want or need us again. What we won't do is come poking our nose into your life. That's a promise.
Almost always, friends and families try to do what is best for a person they love. Attendant services are, for most people, a new idea that maybe sounds a little risky.
We want you to know that people all over the United States have been using attendant services for many years now.
Since we meet new families all the time, we get to hear lots of questions. On the next few pages you'll see some of them and read some of the general answers we give.
Here's something we hear from families all the time:
The hardest thing I ever had to do was put my mother in a nursing home.
For a long time, people were faced with these horrible choices. Either they give up their job and their family life to take care of a relative or else put a person they loved in a nursing home.
Today, thanks to the government of our state, Kansans who are or will be eligible for Medicaid and who need some everyday assistance to survive can get that assistance in their own homes.
If people still want to go to nursing homes, that's fine. If people want to move in with their families and their families want to be the ones to help with everyday stuff, that's fine too. But now there's this other choice. It's called attendant services.
What attendant services amount to is getting most of the assistance a person would get if he or she lived in a nursing home. Attendant services can include things like assistance with getting in and out of bed, with bathing and toileting, with shopping and making meals, with eating, with paying bills on time and taking medications and keeping up with housework, and sometimes also with having a nurse take vital signs and set up the pills to take during a week.
Who pays for all this?
Kansas Medicaid pays attendants to do their work. In almost all cases, the person they do the work for is the boss. Being the boss means setting up the schedule, saying how the work is done, and hiring the person who does it. If your mother can't or doesn't want to do all that, she can do just a part of it and a home health agency will take up the slack.
But my dad already lives in a nursing home.
We can help him get set up, get going, and keep going in a place of his own again. This probably sounds too good to be true, or too expensive. But it's happening for more and more Kansans every year. That's the heart of what we do for a living, and it doesn't cost them or their families a dime.
We want to spread the word about these new services. That's why we made this booklet.
What qualifies you to do this work?
We're the Topeka Independent Living Resource Center (TILRC for short, pronounced Till-Rick). We're a non-profit agency and we've been in business since 1980. We are people with disabilities who provide advocacy and services for people with disabilities.
Our job with the new Kansas Medicaid attendant services program is to get attendant services set up and do whatever else a person wants and needs to have happen so they can live independently.
If the person is not yet in a nursing home, our job is to get them the services they need to help them stay independent. If they're already in a nursing home, we help them get established in the community again.
Kansas Medicaid pays us to do this for you, so it's a free service to you or your relative. Of course there's a catch: For folks with a higher income or savings, the federal government and the state of Kansas limit the amount of money a person can have and still get attendant services through Medicaid.
They require that people who have too much money to be Medicaid-eligible--but still need what Medicaid pays for, like attendant services--do a thing called a "spend-down" or "client obligation." Depending on your personal finances, that can be a little or a lot.
The state actually gets the money from that transaction, but they make us collect it for them. We'll tell you all the details and limitations in plain language any time you want to hear about it.
What we'd rather talk about here is closer to our hearts: how we do our job. See, it's not like we have some special formula or any kind of a one-size-fits-all service. We do whatever it takes to get the job done, from big things like attendant services and housing and home modifications to the little last-minute work to make everything come together at the same time.
There's nothing canned or processed about what we do. It would never fit on a form. We tailor what we do so it's what the person wants and needs to live the life he or she wants to live.
It's not simple. In fact, what we do can get pretty complicated--complicated but not technical. We try to explain it so that the people we're doing it for understand it every step of the way.
We can do just a little for somebody or a whole lot. That's up to the person who gets the services.
The rest of this brochure is written for that person. We hope you'll start from the front and read it through to get an idea of what we do and how we do it.
But my father can't do anything for himself.
One time we helped a man live in the community when everyone said it was hopeless. He had been in coma for pretty much all the years since he got hit by a car, and this man was probably dying by the time we met him and his family.
His family wanted to see that he was treated right and kept comfortable the way anybody should be. We helped get the man moved into a small apartment of his own, near his family so they could come and look in on him whenever they wanted to. But this way they didn't have to give up earning a living and taking care of their kids to take care of him.
We got that man set up with attendant services so the family could be sure that he got his food and his personal needs taken care of. That's where he lived and how he lived until the day he died.
We figure that if we can put together services for someone who really can't do anything for himself at all, we can probably do it for your relative too.
In a situation like that, the person who gets the services isn't in charge of them. Someone in the family takes that role, to make sure things work out right. In all the others ways, it's the same deal.
We'd be happy to work with you and your friend or relative. Just give us a call. We'll come out and meet with you.
| This brochure available from Topeka Independent Living Resource Center, 501 S.W. Jackson, Topeka Kansas 66603, Tel: 800-443-2207, E-mail: tilrc2@tilrc.org, Web site: http://www.tilrc.org |
Published by the Institute on Community Integration,
College of Education and Human Development, University of Minnesota
Volume
12, Number 4, Winter 1999/2000
Full Journal "From the Editors" and the first paragraph of each article are included below. The "Resources for Further Information" is also included in full.
The topic of this Impact returns to the topic of the first issue published 12 years ago. Although that one focused on what was then called "case management", we noted that terms like "service coordination" and "service integration" were becoming increasingly popular as descriptors of "the complex processes involved in case management."
Today, numerous labels are applied to the direct assistance provided people with developmental disabilities and their families, assistance intended to support them in understanding their full range of service and support options; making decisions that support their values, goals, and needs; and more directly controlling their own lives. In these pages, the authors use a variety of terms (e.g., case manager, service coordinator, support broker) to describe the role of those who are supporting persons with developmental disabilities to live the lives they choose. This variation in language reflects our evolving understanding of support, as well as our diverse service systems. Whatever the label, the important message for readers of this issue is that those who fill that role are a vital element of systems committed to supporting inclusion and self-determination.
I'm Not a Case and I Don't Want
to Be Managed!"--Supporting Self-Determination
Charles Moseley
(INTRO ONLY)
People with disabilities historically have had to rely on case managers to assist in planning and coordinating services. The term case manager retains the historical implications of the medical model and its depersonalization of individuals -- thinking of them as occurrences of diseases or conditions (i.e. "cases"). Today, the philosophy and practices associated with self-determination and those of case management are colliding to create and define new roles and responsibilities that are sometimes referred to as support or service coordinators, individual brokers, and other related terms.
From Management to Support: No
More "Business as Usual"
Robin Cooper
(INTRO ONLY)
One of the very best aspects of the field of developmental disabilities is that we reinvent ourselves every few years in response to new knowledge and changing perspectives. How we coordinate services reflects these shifts and changes.
Support Brokers Are in Our
Future
John Agosta
(INTRO ONLY)
The changes that are emerging in systems of support for people with developmental disabilities are part of an evolutionary process that began decades ago. Over this time, the inhumane conditions associated with institutions were exposed; community residential, day and family supports were created; and federal and state legislation supporting the civil rights of people with disabilities was passed. Along the way, ideals like normalization, inclusion, and participation were used to criticize prevailing practices and inform further change. It is as if the closer we think we are to the realization of these ideals, the more they demand of our skills and creativity.
Thinking About Support Broker
Roles
Michael W. Smull
(INTRO ONLY)
As service systems increasingly embrace the principles and practices of self-determination and individual funding, people are looking at the roles of those who have been traditionally known as case managers or service coordinators. The expectations that many had of service coordinators in the late '70s and early '80s have been buried under increasing numbers of people to support and endless paper to complete. As we change from service coordinators to support brokers (or whatever new label is adopted), we have the danger of just changing the labels without changing what happens. Unless the underlying structures are changed, including reducing the volume of paper and the numbers of people each support broker works with, the changes in roles and expectations needed to achieve self-determination are doomed. Real change needs to begin with an understanding of the desired outcomes and then move to developing the structures to support it. We need to begin by asking what do support brokers need to know and do?
Training Future Case Managers:
Moving to a Support Approach
Deborah M. Spitalnik
(INTRO ONLY)
Case management, as a way of helping people more thoroughly benefit from services, began in the anti-poverty programs of the 1960s, and then moved into the rehabilitation field. It was embraced in developmental disabilities services in the mid to late 1970s as community integration became more popular, as people were less often placed in settings where a single agency was responsible for all aspects of their lives, and as a functional approach to defining developmental disabilities became more widespread. The federal Developmental Disabilities Assistance and Bill of Rights Act of 1978 established the policy rationale for case management by including, as part of the criteria for a developmental disability, that it "Reflects the person's need for a combination and sequence of special interdisciplinary or generic care, treatment or other services which are life-long or of extended duration and...are individually planned and coordinated."
Self-Determination Changes
Everything
Ken Stoffel
(INTRO ONLY)
Winnebago County, Wisconsin, set a goal three years ago to transition from a county that provided traditional developmental disabilities services, to one that incorporates the values, principles, and practices of self-determination. With the help of the Robert Wood Johnson Foundation and the State Bureau of Developmental Disabilities Services, we put together a plan that we, at the time, hoped would be fully implemented by the year 2000.
A System in Transition: Dane
County Moves From Case Managers to Support Brokers
Wendy Stockstad
Hecht
(INTRO ONLY)
Dane County, Wisconsin, has long evaluated the way it delivers case management to its citizens with developmental disabilities. While in the past some people received this service from the county case management unit, most had a case manager who was employed by the agency providing their residential or vocational support. Many, in and out of the system, saw the conflict inherent in this way of delivering support in planning, coordination, and advocacy. People with disabilities did not have a choice about their case manager or the work they wanted the case manager to perform with them and on their behalf.
By Freedom Buoyed: Systems Change
in Vermont
Theresa A.M. Wood
(INTRO ONLY)
The dream of freedom buoys the spirits of people around the world as, piece by piece, they dismantle the physical, economic, political, and social walls of oppression and exclusion. This dream of freedom is just beginning to spark in people with developmental disabilities, and it is a spark that individuals concerned with the human and civil rights of all people must fan.
Support Coordination in Florida:
An Evolving Story
Denise Arnold
(INTRO ONLY)
Just as the individuals we serve continue to change and improve their quality of life, the support coordination system in Florida continues to change and improve, evolving into a more person-centered system. It started approximately seven years ago, when Florida first embarked on the concept of independent support coordination. At that time, a traditional case management system existed that was professionally driven and focused on 'fixing" the person rather than building upon the person's talents, abilities, and personal preferences. in 1992, Florida's Medicaid Home and Community-Based Services waiver (HCBS waiver) programs for persons with developmental disabilities was approved for expansion. The person-centered approach to service delivery that was its goal began with the initiation of the independent support coordination design. This article will describe the original design of the system and how the system has evolved.
There's No Place Like Home:
Supporting People in Communities in Kansas
Sharon L. Johnson and
Roxie Namey
(INTRO ONLY)
The Kansas Division of Health Care Policy is committed to providing individuals with developmental disabilities the opportunity to plan person-centered supports, choose among a variety of services and supports, and enjoy full community participation. Consistent with these themes, tremendous changes are occurring related to how people with developmental disabilities receive supports in Kansas. These changes, referred to as the Self-Determination Option, promise to provide the supports that are truly needed and wanted, instead of simply offering what's available.
Plotting a Course to Better
Service: Self-Determination in Nebraska
Carla Lasley
(INTRO ONLY)
With the next century on the horizon, Nebraska's developmental disabilities system continues to plot its course to better serve the state's citizens. Our system has come a long way in the past decade to move toward a system in which self-determination is an inherent part of all services and all efforts to support people with developmental disabilities.
Consumer Empowerment Through
Choice: Indiana's Privatized Case Management
Kathyleen E. Thompkins
and Holly Lambert Fuller
(INTRO ONLY)
Until 1990, case management in Indiana was provided only by governments agencies. In that year, Indiana privatized case management within its Medicaid Home and Community-Based Services (HCBS) waiver program for individuals with developmental disabilities. The motivation for privatization was two-fold. First, downsizing the bureaucracy became popular across the country at that time, beginning at the federal level and moving down to local government. Federal, state, and local government began using more and more private contractors in all areas, from pouring concrete to writing sophisticated computer software. A second more specific motivation for privatizing case management was to reduce the caseloads of state case managers, and support a focus on quality rather than quantity in their work.
Resources for Further Information
The following may be of interest to readers of this issue of Impact. For cost and ordering information on materials, please contact their distributor.
Case Management/Support Coordination
Report of the Services Coordination Implementation Work Team, by the Nebraska Partnership for Health and Human Services. In 1991, the Nebraska Developmental Disabilities Division convened system stakeholders to examine alternatives for comprehensively redesi