This part of the Annotated Bibliography consists of three sections dealing with administrative issues:
1. Service Organization, Financing, and Systems Change
TITLE: Keep the promise: Managed care and people with disabilities
AUTHORS: American Network of Community Options and Resources, in
collaboration with the Research and Training Center on Community
Living, Institute on Community Integration, University of Minnesota
PUBLICATION INFORMATION:
American Network of Community OptionsWhile discussions of managed care and cost cutting are occurring across the United States, Minnesota stands out as having developed a positive process for creating a managed care system for supporting people with developmental disabilities. This monograph includes a detailed review of the process and the lessons that were learned during the long, sometimes tedious, group work. First, several lessons are presented about working as a "community"; next, a number of lessons about the group process are offered.
and Resources (ANCOR)
4200 Evergreen Lane, #315
Annandale, VA 22003
This monograph includes three appendices. The first gives a "record of the discussion" about advantages and disadvantages of what exists in Minnesota, of what is needed, and what can be developed. The second appendix contains "A Plan of the Developmental Disabilities Community for a Cost-Effective Quality Future for Minnesotans with Developmental Disabilities." Finally, the third appendix is the "Developmental Disabilities Community Principles, Values and Indicators Proposal Review Form."
While this monograph is based on managed care in Minnesota, the information may be very useful to other states that are working to develop responsive managed care systems.
TITLE: Health care financing for severe developmental disabilities
AUTHORS: Birenbaum, A., Guyot, D., & Cohen, H. J.
PUBLICATION INFORMATION: 1990
American Association on Mental Retardation (AAMR)Despite recent reforms to health care provision for children with disabilities, the return of these children to their communities, and a voice to their families, "assurance of access to services and equitable means for meeting the expense" remain fragmented and ultimately incomplete. The fourteenth book in a series of AAMR Monographs, this monograph describes a multi-methodological study of the utilization, expenditures, and financing of health care for children and young adults with two types of mental disabilities: autism and severe or profound mental retardation. Specifically, this study of over 600 children aimed to "develop estimates of the patterns of health care utilization, expenditures...[and] to develop policy alternatives that will improve health care while containing costs." Annual expenditures for families of children with disabilities, financial burden on families, patterns of financing for health care, traditional paid and unpaid services for families, and family hardship are discussed. The researchers conclude that, "inequities abound in the financing of health care," and they suggest a number of policies that could correct these inequities relatively inexpensively.
444 North Capitol Street, NW, Suite 846
Washington, DC 20001-1570
TITLE: The state of the states in developmental disabilities (4th ed.)
AUTHORS: Braddock, D., Hemp, R., Bachelder, L., & Fujiura, G.
PUBLICATION INFORMATION: 1995
American Association on Mental Retardation (AAMR)During the 1980s, David Braddock and his colleagues have produced national studies of public spending by the states for mental retardation and developmental disabilities services. This book is the third update of these studies, and is the most useful because, in addition to being current and comprehensive, it is hardbound and therefore sturdier than the first two documents. The first section describes the study and provides analyses of spending across states. The second section of the book contains hundreds of charts and other graphics that depict state spending for residential and community services and break down each state's expenditures, revenue sources, population trends, and other critical factors. Charts depicting each state's MR/DD spending per $1,000 per capita income and concise descriptions of the state's programs allow quick comparisons of state efforts and trends. The third section provides supplementary financial and programmatic data, such as state-by-state information on income maintenance programs (federal and state SSI, child disability benefits for adults disabled in childhood), special education services, and vocational rehabilitation services.
444 North Capitol Street, NW, Suite 846
Washington, DC 20001-1570
This critical reference provides answers to questions regarding where federal and state dollars are going and how states compare with one another, and is the most comprehensive and detailed analysis of public expenditures published to date.
TITLE: Creating individual support for people with developmental disabilities: A mandate for change at many levels
AUTHORS: Bradley, V. J., Ashbaugh, J. W., & Blaney, B. C. (Eds.)
PUBLICATION INFORMATION: 1994
This book addresses the need for change at all levels of the service system in the effort to develop integrated services. It is organized in five major sections. The first section contains chapters which offer a history and rationale for the evolution of a new service paradigm of individualized supports. Chapters in the second section focus on issues of conceptual change. The third section, "Change Throughout the System," includes chapters which describe examples of organizational and systems change. The fourth section, "Leadership and Empowerment," contains chapters related to advocacy and grassroots change. Finally, Section Five, "Mechanisms for Change," discusses issues such as planning, quality assurance, legislation, and implications for future practice and systems design.
TITLE: Developing financial incentives for placement in the least restrictive alternative
AUTHORS: Copeland, W. C., & Iversen, I. A.
PUBLICATION INFORMATION: 1985
In K. C. Lakin & R. H. Bruininks (Eds.), Strategies for achieving community integration for developmental disabled citizens. Baltimore: Paul H. Brookes Publishing Co.The authors of this chapter suggest that the way most states and the federal government fund services for people with developmental disabilities tends to be uncoordinated and may actually hinder integration. A strong case is made for an approach to funding which is tied to individuals rather than solely to programs. A model state budget is used to show how funds can be redirected in a manner which will support integration.
TITLE: The cost of program models providing personal assistance services (PAS) for independent living
AUTHOR: Engley, L.
PUBLICATION INFORMATION: 1994
World Institute on DisabilityThis report describes six program models that provide personal assistance services to people with disabilities. Each model is scrutinized in terms of cost, which is a public expenditure, and degree of independent living that is provided to consumers. These six examples of personal assistance services show the range of models available, and how states and agencies can define the concept of independent living for individuals. Many issues are considered, including whether the consumer of personal assistance services can choose a provider or agency from which to receive services, and the amount of control the consumer has regarding the type of service provided, hiring and firing issues, and paying the attendant. The report concludes that there was a major difference between programs that used individual providers and agency programs. Agency programs offered less support for independent living, and cost about twice as much as individual providers, mostly due to increased administrative costs.
510 Sixteenth St., Suite 100
Oakland, CA 94612-1500
TITLE: Parent power: Change through grassroots networking
AUTHORS: Farber, A., & Marcel, K.
PUBLICATION INFORMATION: 1994
In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 373-285). Baltimore: Paul H. Brookes Publishing Co.This book chapter describes an effort driving by parents in Louisiana to change the state's service system. In the late 1980s many parents in this state were frustrated with the lack of alternatives to institutionalization that existed for their children with severe disabilities. Beginning in 1988, parents joined other advocacy groups and policy makers to develop a vision of family support and supported living, design and push through supportive legislation, secure funding, and develop services. This chapter describes those efforts as well as the lessons learned from parent involvement in changing the service system.
TITLE: Direct dollars: A study of individualized funding in Canada
AUTHOR: G. Allan Roeher Institute
PUBLICATION INFORMATION: 1993
The G. Allan Roeher InstituteThis book describes research that was part of a series of studies conducted by the Roeher Institute on the creation of a service system in Canada that is directed by the people receiving services as well as more equitable and cost-effective. This study focuses on individualize funding, or the practice of giving money directly to people with disabilities and their families. It describes the general concept of individualized funding and examines current funding arrangements and their relation to individualized funding. It explores specific models of individualized funding and analyzes the implications of individualized funding from the perspectives of consumer, service providers, social service agencies, and the social welfare field. This study also briefly explores the applicability of individualized funding to other types of services such as vocational services, housing, child care, transportation, and education.
4700 Keele Street, Kinsmen Building
North York, Ontario M3J 1P3
CANADA
TITLE: Nothing personal: The need for personal supports in Canada
AUTHOR: G. Allan Roeher Institute
PUBLICATION INFORMATION: 1993
The G. Allan Roeher InstituteThis book focuses on personal supports in Canada; however, many of the issues raised are relevant in the U.S. The first two chapters describe the framework within which personal supports are provided in Canada. Chapter 3 analyzes three fundamental problems with personal supports: access (problems of availability, complexity, and affordability); eligibility (problems in gaining entry to the system); and responsiveness (problems within the system). Finally, Chapter 4 presents policy options to address the issues raised in Chapter 3.
4700 Keele Street, Kinsmen Building
North York, ON M3J 1P3
CANADA
TITLE: The power to choose: An examination of service brokerage
and individualized funding as implemented by the Community
Living Society
AUTHOR: G. Allan Roeher Institute
PUBLICATION INFORMATION: 1991
The G. Allan Roeher InstituteThe power to choose is an examination of the impact of service brokerage and individualized funding on achieving the aim of self-determination, autonomy, and dignity for individuals labeled with an intellectual disability. Specifically, service brokerage is "a mechanism to deliver the planning resources that individuals require to arrange and purchase community supports and services. Service brokers assist individuals and their families in defining needs, provide information about alternative support and service options, etc." Through service brokerage, it is hoped that the individuals will be able to determine as fully as possible the decisions affecting his or her life. Specific topics discussed in this book include: making decisions for yourself, access to planning resources and planning in general, access to financial resources, accountability to individuals, and availability of community-based resources.
4700 Keele Street, Kinsmen Building
York University
North York, ON M3J 1P3
CANADA
TITLE: Service brokerage: Individual empowerment and social service accountability
AUTHOR: G. Allan Roeher Institute
PUBLICATION INFORMATION: 1987
The G. Allan Roeher InstituteService brokerage, a concept that has been discussed for years, has been operationalized in British Columbia and is described in this small manual. In British Columbia, the concept was developed by parents of people with disabilities and is based on the belief that the standard ways of providing and funding services are inadequate. Service brokerage attempts to make systems more accountable to the people served by them and to put decision making control in the hands of these people and their support networks.
4700 Keele Street, Kinsmen Building
York University
North York, ON M3J 1P3
CANADA
This monograph provides a comprehensive overview of the service brokerage concept and clarifies some of its critical operational aspects. Brokerage is described as one dimension of a three component "support nucleus." The "three inseparable components which complement each other" include: (1) the personal network; (2) individualized funding which ties dollars to the individual; and (3) an autonomous planning vehicle, acting as a fixed point of responsibility for planning and providing service brokerage as required to the individual who is supported by his or her personal network. "The support nucleus is in turn designed to function within the overall patchwork of services and supports provided by society to its citizens."
TITLE: Challenges for a service system in transition: Ensuring quality community experiences for persons with developmental disabilities
AUTHORS: Hayden, M. F., & Abery, B. H. (Eds.)
PUBLICATION INFORMATION: 1994
"As community participation and empowerment of persons with developmental disabilities change the very nature of service delivery, service providers are challenged to find the means and strategies to furnish services and supports that fit the unique needs of the individual rather than asking the individual to conform to the constraints of the services." This edited book is based on a second wave of community living research in which the researchers were participants, rather than the traditional observers. It is divided into four parts. Chapters in Part I address approaches to community living research, with an introductory chapter providing an overview of the community living concept. The three chapters in Part II discuss social relationships and community integration. Part III, Community Services and Support Issues, contains chapters that deal with issues related to costs and financing, staff training and retention, among others. Finally, the five chapters in Part IV, "Enhancing Independence and Autonomy," discuss self-determination, multicultural issues, legal guardianship, and supported employment.
TITLE: IMPACT: Feature issue on institution closures
AUTHORS: Hayden, M. F., Lakin, K. C., & Taylor, S. (Eds.)
PUBLICATION INFORMATION: 1995-1996
This issue of IMPACT contains a wide variety of articles about institutional closure. It includes articles about the realities of institutions by people with disabilities, description of a national effort by self-advocates to promote institution closure, parent perspectives on deinstitutionalization, national trends in institution closure, and deinstitutionalization litigation. It also contains articles describing specific processes of institution closure (e.g., Brandon Training School, in Vermont), as well as articles discussing the development of community services in conjunction with institution closure.
TITLE: Creative financing of community services: The state agency perspective
AUTHORS: Hemp, R., Braddock, D., Bachelder, L., & Haasen, K.
PUBLICATION INFORMATION: 1990
University Affiliated ProgramDefining creative financing as "coordinating multiple governmental and private sector funding sources in the development and maintenance of effective systems of community services for individuals with mental retardation/developmental disabilities," this monograph presents the perspectives of the principal mental retardation/developmental disabilities agencies in 20 states. The 20 states selected for the survey represented those judged to be most committed to and involved in delivery of community services, and the survey questions focused on the range of services and supports which constitute an "open" community system.
in Developmental Disabilities
University of Illinois at Chicago
1640 West Roosevelt Road, M/C 626
Chicago, IL 60608
This monograph presents data on states' use of federal, state, and private sector funding sources as well as a series of recommendations for future development. The respondents, most of whom were directors of state offices, identified factors that have encouraged community service development, described state and local factors contributing to funding for community services, and defined federal, state and local governmental and private sector constraints in the development of community services. The responses of these 20 state agencies give cause for hope: it appears that states are looking for ways to promote integration, individualization, and flexibility in funding and service delivery as they work with providers, families, and people seeking services. A subsequent survey and report will address the perspective of private, community-based provider organizations.
TITLE: Jay Nolan Community Services: The advantages and dilemmas of
converting quickly from group homes to supported living services
AUTHOR: Hulgin, K.
PUBLICATION INFORMATION: 1996
Syracuse, New York: Center on Human Policy, Syracuse University.Jay Nolan Community Services is a nonprofit organization that provides a range of services to people with autism and other developmental disabilities in Los Angeles, California. Since January 1993, this agency has made remarkable changes in the way that it provides residential services. It has moved from operating group homes to supporting people to live in their own homes. This report, based on a visit in November 1995, describes this process of change.
The first section outlines the agency process of transition from group homes to supporting people in their own homes. This section includes a discussion of significant opportunities and strategies that contributed to the agency's success in this relatively quick change process, including: (1) learning from other agencies that had been successful in developing supported living services; (2) culturing the commitment and skills of a team of staff; (3) clarifying issues related to decision making power; (4) giving families opportunities to learn about supported living; and (5) agreeing to shift to supported living services without asking for increased state funding.
The following section describes ways in which the agency has begun to identify and respond to the needs and preferences of individuals over the long term, including: implementing circles of support; rearranging staff responsibilities; providing continuous opportunities for learning; and working to gain system support. Another section describes some specific changes that have occurred in a few people's lives. And, the report ends with a summary of lessons that have emerged from implementing a supported living approach in this agency.
TITLE: The journey to inclusion: A resource guide for state policymakers
AUTHORS: Jaskulski, T., Lakin, K. C., & Zierman, S.
PUBLICATION INFORMATION: 1995
President's Committee on Mental RetardationThis report begins with a discussion of the changing responses to people with mental retardation in order to provide a context for thinking about the journey to inclusion. It opens with the thoughts of people with mental retardation and their family members on the importance of inclusion, followed by an overview of trends toward inclusion in the service system and the evolution in our understanding of what is important to people with mental retardation. Chapter 2 summarizes the concept of mental retardation and provides information on prevalence. Chapters 3 and 4 focus on inclusion throughout the life span with many stories and examples about individual people and from many different states and localities. Chapter 5 focuses more specifically on supports, at the level of the individual, family, and communities and systems. The final chapter emphasizes the importance of empowerment, and includes many statements from self-advocates. Resources for further information are provided in each chapter, as well as in the Appendices.
Administration for Children and Families
Cohen Building, Room 5325
330 Independence Avenue, S.E.
Washington, DC 20201
TITLE: Medicaid services for persons with mental retardation and related conditions
AUTHORS: Lakin, K. C., Jaskulski, T. M., Hill, B. K., Bruininks, R. H., Menke, J. M.,
White, C. C., & Wright, E. A.
PUBLICATION INFORMATION: 1989
Minneapolis: Center for Residential and Community Services, Institute on Community Integration, University of Minnesota.This report describes a major research project funded by the Health Care Financing Administration (HCFA) to examine policy related trends and projections in the use of various Medicaid-funded services for persons with mental retardation and to identify factors influencing these trends nationally and in the various states. The project made a longitudinal analysis of extant data bases on residential services, surveyed all state MR/DD agencies, and prepared case studies of 10 states. This report examines general trends in residential services nationwide, status and trends in intermediate care facilities (ICF/MRs), use of the Medicaid waiver (Home and Community-Based Services) in states, placement of people with mental retardation in nursing homes, and the use of other Medicaid options.
A valuable aspect of this report is that it points out that community services have become the norm in most states, and that state directors are interested in expanding and improving community living options. According to this report, state directors contend that the states need and are seeking expanded federal participation in these endeavors, and are asking for changes in Medicaid, whether in the form of reductions in the restrictions in HCBS requirements or in passage of Medicaid reform legislation. The last few pages of the report detail the problems currently facing states with attention to how the two current Medicaid reform bills respond to them.
TITLE: Medicaid managed care: An advocate's guide to protecting children
AUTHORS: Langill, D., Dubois, S. K., Martin, K., Perkins, J., & Rivera, L.
PUBLICATION INFORMATION: 1996
National Association of Child AdvocatesThis manual is designed for use by a broad audience, from experts in children's health care to novices seeking to understand the complexities of Medicaid and managed care. The manual contains information that ranges from a basic overview of the Medicaid program, to complex and technical information on various aspects of managed care, to descriptions of successful advocacy strategies.
1522 K Street, N.W., Suite 600
Washington, DC 20005
The chapters of the manual are divided into two sections: chapters in Section I present programmatic and technical information about the Medicaid program, managed care, and state Medicaid managed care programs, while chapters in Section II discuss ways that advocates can influence the development and implementation of Medicaid managed care programs in their states and localities. The manual also includes a series of appendices that contain additional information and resource materials that address Medicaid, managed care, and advocacy on behalf of children and other Medicaid beneficiaries.
TITLE: Supported living monograph, Volume II
AUTHOR: National Association of Private Residential Resources
PUBLICATION INFORMATION: 1992
NAPRRThis monograph was prepared for a conference on Supported Living sponsored by NAPRR in February, 1992. It includes a book chapter by Jay Klein on home ownership, an article by John O'Brien and Connie Lyle O'Brien about organizational issues related to supported living, and several other articles. The appendix includes lists of other resource materials.
4200 Evergreen Lane, Suite 315
Annandale, VA 22003
TITLE: Perspectives and Community Services Reporter
AUTHOR: National Association of State Directors of Developmental Disabilities Services, Inc.
PUBLICATION INFORMATION: Monthly
NASDDDSThese monthly publications include articles about general issues in developing community services and innovative practices around the country. Each issue also contains resources such as publications, videos, and conferences.
113 Oronoco Street
Alexandria, VA 22314
TITLE: An affirmation of community: A revolution of vision and goals
AUTHORS: Nerney, T., & Crowley, R. F.
PUBLICATION INFORMATION:
Monadnock Developmental ServicesIn 1993, Monadnock Developmental Services, a non-profit regional agency in New Hampshire, was awarded a grant from the Robert Wood Johnson Foundation for the purpose of creating a local system of services that supports self-determination. This monograph was developed as a plan or guide in that process. It provides an overview of the values and vision of the agency and six specific goals including: self-determined personal supports, integrated housing, elimination of the congregate model, inclusive education, equal access to employment, and universal physical accessibility. The second part of the monograph describes how the system and funding mechanisms would have to change to support a service plan that is developed by individuals and the people closest to them. The concepts of circles of support, service brokerage and individualized funding are emphasized.
Region V Area Agency
Keene, NH
TITLE: Remembering the soul of our work: Stories by the staff of Options in Community Living, Madison, Wisconsin
AUTHORS: O'Brien, J., & Lyle O'Brien, C. (Eds.)
PUBLICATION INFORMATION: 1992
Options in Community LivingThis is a collection of 150 stories written between 1987 and 1991 by staff from Options in Community Living of Madison Wisconsin, an agency that pioneered the supported living movement. Their stories effectively communicate some of the qualities that make their work meaningful.
22 North Second Street
Madison, WI 53704
TITLE: More than just a new address: Images of organization for supported living agencies
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1991
Lithonia, GA: Responsive Systems Associates. (Available from the Center on Human Policy)In this paper, O'Brien and Lyle O'Brien explain the need for new ways of thinking about organizations and of organizing to implement a supported living approach. They explain that supported living involves a new mindset in working with people, one which is not compatible with many existing service organizations. More responsive organizations will facilitate positive relationships with people receiving services and the opportunity for continuous learning from the effort to support them. The paper includes ideas for building new structured uses of power within agencies. For example, it describes a new way of building effective teams and responsibilities of directors. The paper concludes with a discussion of the need to view organizations as social units rather than the traditional machine image if these changes are to be implemented successfully.
TITLE: Liability issues affecting consumer-directed personal assistance
services: Report and recommendations
AUTHORS: Sabatino, C.P., & Litvak, S.
PUBLICATION INFORMATION: 1995
World Institute on DisabilityThis report identifies two policy challenges in the area of personal assistance services for people with disabilities: cost of services and program design. Liability is an important part of both of these issues. Liability can include employment taxes and benefits such as worker's compensation and unemployment insurance, personal injury due to negligence, and provider certification and licensure requirements. These liabilities and other legal obligations affect the way personal assistance services are offered. This report addresses these concerns from different competing groups: consumer, service sponsor, service provider, and regulator. Several specific issues are identified under each section of liability and recommendations are provided that will help agencies and government provide better personal assistance services to people with disabilities.
510 Sixteenth St., Suite 100
Oakland, CA 94612-1500
TITLE: Supported living: New directions in services to people with developmental disabilities
AUTHOR: Smith, G.
PUBLICATION INFORMATION: 1991
NASDDDSThis volume provides a comprehensive summary of supported living nationwide. It includes an overview of supported living, and chapters on various state supported living programs, approaches to financing supported living, and the lessons being learned as states implement supported living programs.
113 Oronoco Street
Alexandria, VA 22314
TITLE: Managed care and people with developmental disabilities: A guidebook
AUTHORS: Smith, G., & Ashbaugh, J.
PUBLICATION INFORMATION: 1995
NASDDDSThe move from the traditional Medicaid program as a means of providing supports for persons with developmental disabilities is being replaced with the newer Managed Care "system." These changes are forcing us to rethink how to structure systems to deliver supports to individuals with disabilities both economically and efficiently. This guidebook is intended to help individuals make the transition to the managed care system while at the same time incorporating the "overarching goals of inclusion and self-determination for people with developmental disabilities." Included in this guidebook are the sections: an overview of managed care, managed care in the States, managed health care and people with developmental disabilities, long-term care and supports, strategic issues concerning long-term supports, managed care models, a managed care feasibility study and plan, and a description of several plans already in existence across the US.
113 Oronoco Street
Alexandria, VA 22314
TITLE: Coming home: From deinstitutionalization to supporting people in their own homes in Region VI, New Hampshire
AUTHOR: Walker, P.
PUBLICATION INFORMATION: 1993
Syracuse, NY: Center on Human Policy, Syracuse University.This report describes the efforts of the Area Agency for Developmental Services in Region VI, New Hampshire to shift from supporting people in group homes to supporting them in their own homes. It offers important lessons for agencies/regions facing the dual challenge of institutional closure and promoting quality of life in the community.
2. Planning and Developing Supports with Individuals
The ability of people with the most severe disabilities to live and flourish in the community is largely dependent on the availability of individualized and flexible services and supports. The resources in this section provide conceptual frameworks, service principles, and strategies and resources to use in managing and coordinating a comprehensive system of services. Other materials on planning and coordination of specific services are annotated in the "services and supports" sections.
TITLE: Getting to know you: One approach to service assessment and planning for individuals with disabilities
AUTHORS: Brost, M. M., & Johnson, T. Z.
PUBLICATION INFORMATION: 1982
DHSS-DCSThis book describes one attempt to create an alternative approach to needs assessment and service planning for people with developmental disabilities. The authors don't believe that knowledge or understanding of a person's needs can be gained through administration of interview schedules, checklists or any other standardized procedures (most widely used in human services today). Instead they have developed an alternative and manageable way of gathering information that avoids treating people routinely or losing track of their uniqueness. This alternative approach to individual assessment and planning offers very helpful guidelines to insure that the services that are planned, purchased and delivered really respond to the individual's need. The book is divided into two parts: Part I contains a description of the approach to need assessment and planning that was developed and refined during 1979-1981 by staff of the Developing Individualized Service Option Project in Wisconsin. Part II describes and critiques a training project carried out in LaCrosse, Wisconsin to teach people to use the need assessment and service planning process described in Part I.
P.O. Box 7851
Madison, WI 53707
The book is a very useful handbook for people whose jobs involve assessment/planning and for people involved in training others in assessment and planning. Much of the material is also a valuable resource for others, such as direct service providers, advocates, administrators, parents and consumers.
TITLE: Choices and obligations: A look at personal guardianship
AUTHOR: Centre for Research and Education in Human Services
PUBLICATION INFORMATION: 1988
Centre for Research and Education in Human ServicesThis, one of a series of Policy Analysis Papers, is based on a day long meeting coordinated by the Centre for Research & Education in Human Services. The group in attendance represented consumers, parents, service providers, advocates, and community researchers as well as board members and staff of the Centre. As such, this paper presents a philosophical overview of the reasons for, dilemmas inherent in, and abuses occurring with the legal procedures known as guardianship. While Canadian law may differ from guardianship law in any given state in this country, many of the issues and dilemmas surrounding guardianship hold true here as well. Thus, this short paper is valuable because it frames these issues, discusses when and why intervention in an adult's life might be considered, and points out the complexities of establishing what is in the best interest of another.
P.O. Box 3036, Station "C"
Kitchener, ON N2G 4R5
CANADA
Another good aspect of this paper lies in its discussion of the limitations of legislation and its exploration of the idea that expanded policies and community initiatives to create more responsive communities must accompany effective, nonintrusive guardianship legislation. It points out the many times in which nonguardianship responses are more appropriate and protective of individual rights than an automatic presumption of incompetency, and the many safeguards that should be employed if guardianship is used. The paper concludes with a variety of suggestions for guardians, policymakers, judges, and others concerned with the issues surrounding guardianship.
TITLE: Choice through knowledge, knowledge = power
AUTHORS: Cotton, P., & Sowers, J.
PUBLICATION INFORMATION: 1995
This manual was developed to provide an overview of services offered through an organization called Opus, Inc. in New Hampshire. The organization was formed in 1995 to assists individuals with disabilities and their families to determine the types of support they need and to get them either through formal or informal resources.
The emphasis of their efforts is on assisting people to understand and create alternative means of getting the supports they need such as hiring a service broker to find services through natural networks, professional business arenas, community services, and human service systems. Prior to choosing service providers, the agency assists individuals to define what they consider quality services and to conduct interviews with service providers. Once the providers are chosen, Opus, Inc. assists individuals and their families to secure the necessary funding which sometimes involves negotiating with the state. Finally, the agency assists people to evaluate the effectiveness of their supports over time.
Services through Opus, Inc. are paid for by the individual. Typically, funding agencies in New Hampshire allocate a sum of money to the individual to purchase facilitation and support for service planning.
TITLE: Building community one person at a time: One candle power
AUTHORS: Ducharme, G., Beeman, P., DeMarasse, R., & Ludlum, C.
PUBLICATION INFORMATION: 1994
In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A manual for change at many levels (pp. 347-360). Baltimore: Paul H. Brookes Publishing Co.This chapter describes a project funded by the Connecticut Developmental Disabilities Council to implement the concept of circles of support with five individuals. Circles of support, as described here, consist of a six part process designed to improve the lives of individuals with disabilities. The process includes: 1) building on capacities of people and communities; 2) clarifying the vision and goals of the person with the disability; 3) building circles of supports; 4) building bridges to community life; 5) starting small, and; 6) changing the system. In this chapter, Demarasee (who lived in an institution) and Ludlum (who lived with her family) tell how this process has helped them to move to homes of their own and gain membership in their communities.
TITLE: Reuniting families: A resource guide for family involvement in the closing of institutions
AUTHOR: Farlow, D.
PUBLICATION INFORMATION: 1987
Family Support InstituteThis booklet is a companion volume to Return to the community: The process of closing an institution, produced by the Centre for Research & Education in Ontario. It is based on information collected for the study reported on in that volume, and provides hopeful and specific information on reinvolving families whose ties to their family member may have been attenuated or eliminated through a long institutionalization. This book is a must for anyone involved actively in deinstitutionalization, and for those working with people who have left institutions but have little family involvement. The book is written for, and from the point of view of, families but has great relevance for professionals seeking to understand family reluctance and fears about deinstitutionalization.
300-3 East 6th Avenue
Vancouver, BC, V5T 4P4
CANADA
TITLE: Creating responsive communities: Reflections on a process of social change
AUTHOR: Lord, J.
PUBLICATION INFORMATION: 1985
Ontario Association for the Mentally RetardedThis monograph is about the struggle to create more responsive communities for people with developmental handicaps and their families. In Ontario, Canada, this struggle took the form of ComServ, an acronym for comprehensive, community-based services, a social change strategy developed in 1972. In its simplest form, the goal of ComServ is to provide every handicapped individual with a place in their community where they can go to be assured that high quality services which are comprehensive to their needs will be developed. In another sense, ComServ is about how regions can plan services with individuals and families to ensure that services are valued, individualized, and as integrated as possible.
376 Bayview Avenue
Toronto, Ontario M4G 3A3
CANADA
This monograph has three major sections. Part One documents the history of the ComServ movement in Ontario, including an analysis of the various initiatives which led people in the 1970s to be concerned about issues which go beyond direct service provision. Part Two provides an analysis and assessment of more recent critical issues and actions from the social change process, including major themes, principles, and processes which have worked and some of those which have faced difficulties. And finally Part Three reflects on how the nature of ComServ has been revised as people's understanding has expanded and as political-economic contexts have changed.
TITLE: Return to the community: The process of closing an institution
AUTHORS: Lord, J., & Hearn, C.
PUBLICATION INFORMATION: 1987
Centre for Research and Education in Human ServicesThis is an excellent qualitative study of the experiences of people with mental retardation, their families, governmental officials and human service workers involved in the closure of an institution in British Columbia. Throughout the work, ordinary language and dozens of quotations by the people affected are used to discuss and ground the themes that emerged during the course of the study. The findings will be of value to anyone considering change from one form of human service to another, and of special interest to those who are thinking about closing an institution. As readers we are first introduced to the families, residents, and workers and their feelings about and investment in the institution. Next, we move through the process from July 8, 1983, when the government announced the institution would close, to its actual closure 18 months later. Finally, we see how the men and women who left are faring one year later in their services in the community. We see the inadequacy of the planning that usually went into the process, and thereby learn of the importance of careful planning and involvement of families, even families who seem no longer connected to their family member. We learn how eager the families, staff, and community groups were to be involved in the planning, and of the many ways in which some of the parties engaged people in the process. The study documents many weaknesses in the community services that resulted from the process, including their reliance on group homes as the preferred way for people to live in the community and the lack of awareness of the importance of social interaction and social integration for the people who moved back to their home communities. It also documents many benefits of the move for the people affected. This is "must" reading for policymakers and workers hoping to be involved in major social change efforts.
P.O. Box 3036, Station C
Kitchener, ON N2G 4R5
CANADA
TITLE: Capacity works: Finding windows for change using personal futures planning
AUTHOR: Mount, B.
PUBLICATION INFORMATION: 1995
The Community PlaceThis is a workbook designed to assist people with disabilities, their families, and allies to help clarify their thinking and focus their efforts in the process of personal futures planning. It describes six "windows" that can help guide people through the process of developing a vision and a strategy for action. The windows include: listening to hope; expanding and deepening relationships; recognizing and developing preferences; finding opportunities in community life; developing a future vision; and understanding my struggle. For each window, the workshop presents discussion, examples, and reflection tasks to help guide group discussion.
730 Main Street
Manchester, CT 06040
TITLE: Person-centered planning: Finding directions for change using personal futures planning
AUTHOR: Mount, B.
PUBLICATION INFORMATION: 1992
Graphic Futures, Inc.This booklet presents the values and philosophy of person-centered planning in comparison with traditional practices. It includes a description of the planning process and the implications for long term change for individuals and organizations.
25 West 81st Street, 16-B
New York, NY 10024
TITLE: It's never too early, it's never too late: A booklet about personal futures planning
AUTHORS: Mount, B., & Zwernik, K.
PUBLICATION INFORMATION: 1988
Metropolitan CouncilThis booklet provides a good overview of personal futures planning. It begins with a comparison of this approach with traditional planning methods. Then, through personal examples, the booklet describes the components of the actual planning process, including many illustrations. The last section discusses the role of personal futures planning in relation to Individual Habilitation Plans and in promoting systems change.
Mears Park Centre
230 East Fifth Street
St. Paul, MN 55101
TITLE: A guide to life-style planning: Using The activities catalogue to integrate services and natural supports.
AUTHOR: O'Brien, J.
PUBLICATION INFORMATION: 1987
In B. Wilcox & G. T. Bellamy, (1987) A comprehensive guide to The activities catalog: An alternative curriculum for youth and adults with severe disabilities (pp. 175-189). Baltimore: Paul H. Brookes Publishing Co.O'Brien presents life-style planning as a process that guides family members, friends, and service providers through three essential planning activities: 1) describing a desirable future with the person with a disability; 2) developing a schedule of activities and supports that will organize available resources to move toward the future; and 3) accepting responsibility for using available opportunities and dealing with the lack of needed activities and supports. This approach is based on the understanding that there are five basic accomplishments that should guide services for people with severe disabilities: community presence, community participation, choice, respect, and competence.
TITLE: Finding a way toward everyday lives: The contribution of person centered planning
AUTHORS: O'Brien J., & Lovett, H.
PUBLICATION INFORMATION: 1992
Harrisburg, PA: Pennsylvania Office of Mental Retardation. (Available from the Center on Human Policy)This monograph begins with a description of the foundations of person centered planning. "The term, person centered planning, refers to a family of approaches to organizing and guiding community change in alliance with people with disabilities and their families and friends." Next is a discussion of how person centered planning influences change by: creating a compelling image of a desirable future and inviting people to join with the focus person to make it happen; strengthening personal relationships; and helping people plan, act, and learn by reflecting on their successes and failures. The authors then discuss some limitations of person centered planning, as well as controversies among people engaged in person centered planning. They then discuss fears about the debasement of person centered planning, and offer some possible safeguards related to this. The monograph concludes with discussion about distinctions between various approaches to person centered planning (e.g., individual service design, personal futures planning, MAPS, essential lifestyle planning) and brief comment about the future of person centered planning.
TITLE: Framework for accomplishment: A workshop for people developing better services
AUTHORS: O'Brien, J., & Lyle, C.
PUBLICATION INFORMATION: 1988
Responsive Systems AssociatesThis is an excellent week-long workshop for service providers and others interested in developing better ways of supporting people to live in the community. The workshop emphasizes accomplishments and valued experiences that apply to most people in our society, and leads the participant to discover ways of supporting one person to achieve these accomplishments and experiences. Participants work in teams, each participant in a team getting to know one person with a disability. The team develops profiles for desired futures for the people they have come to know, and works together to define constructive actions that could be taken by the program serving that person. This is an intense and creative experience, very enjoyable for participants and for the agencies that volunteer as sites for the workshop. The manual for the workshop cannot be purchased separately.
58 Willowick Drive
Lithonia, GA 30038
TITLE: Telling new stories: The search for capacity among people with severe handicaps
AUTHORS: O'Brien, J., & Mount, B.
PUBLICATION INFORMATION: 1989
Lithonia, GA: Responsive Systems Associates. (Available from the Center on Human Policy)This article tells the story of a man from two perspectives. It contrasts the story told by traditional service plans with the effort to understand his life from a personal and capacity based perspective. The two stories differ in the way they were constructed, in their purpose, in their consequence, and in the assumption they shape about human development and human service organization.
TITLE: PATH: A workbook for planning positive possible futures
AUTHORS: Pearpoint, J., O'Brien, J., & Forest, M.
PUBLICATION INFORMATION: 1993
Inclusion Press"The authors of PATH have a vision of a just world, rich with diversity, where every person's gifts are acknowledged, supported, valued; a world where everyone is included, belongs, and makes valued contributions." PATH is a planning process to assist people and organizations achieve that vision. This booklet begins with an introduction to PATH. It then discusses the eight steps that define the PATH process: (1) touching the dream; (2) sensing the goal; (3) grounding in the now; (4) identifying people to enroll; (5) recognizing ways to build strength; (6) charting action for the next few months; (7) planning the next month's work; and (8) committing to the first step. Description of each step includes numerous examples and illustrations.
24 Thome Crescent
Toronto, ON M6H 2S5
CANADA
TITLE: A handbook for people thinking about moving
AUTHOR: People First of Washington
PUBLICATION INFORMATION: 1990
People First of WashingtonPeople with developmental disabilities who are thinking about--or being projected for--a move from one place to another (nursing home or institution to community, group home to apartment, etc.) may need assistance in making informed choices about the options available to them. This handbook can be used by anyone, including a member of a self-advocacy group, to help someone understand and decide about a new home. The user goes through a process that includes four steps: 1) knowing one's rights about moving; 2) making a list of what one wants in life; 3) looking at, visiting, and comparing all the choices to what one wants; 4) making a decision without pressure. The handbook is laid out for use as a workbook, so that users could write in it as they go through the steps. It could also be used by an individual's family and friends, if they are needed to help with the decision-making process. Each step asks a large number of concrete questions that should help users develop a vision of what is wanted and to compare that vision with an actual place. While this handbook uses a few state-specific terms, it is nevertheless an excellent resource for anyone interested in planning with an individual with developmental disabilities.
P.O. Box 381
Tacoma, WA 98401
TITLE: Supporting people with severe reputations in the community
AUTHOR: Smull, M., & Harrison, S.
PUBLICATION INFORMATION: 1992
NASDDDSThis handbook describes, using many practical examples, how people receive "severe reputations," how planning can be implemented with an individual for community living, how supports to implement the plan can be recruited, and how the frequent perversions of supported living for people with more severe disabilities can be avoided.
113 Oronoco Street
Alexandria, VA 22314
TITLE: Reviewing essential lifestyle plans: Criteria for best plans
AUTHORS: Smull, M. W., Sanderson, H., & Harrison, S. B.
PUBLICATION INFORMATION: 1996
Michael SmullThis document presents criteria for determining "good" or "best" essential lifestyle plans. It first provides an overview of these criteria, which cover what type of information should be included in the plan, the language and detail of the plan, and the way that the plan is approached (e.g., "with" people rather than "for" people). Next, the paper provides detailed discussion and examples for each of the criteria, including possible headings to use, as well as the kind of information to include/not include. This document concludes with a discussion of additional issues to consider in developing and reviewing plans, including: looking beneath the surface; the importance of helping people have opportunities; helping people learn (the role of teaching); the use of graphics; whose voice to use; the plan as a means to an end.
Support Development Associates
4208 Knowles Avenue
Kensington, MD 20895
Promoting quality, and ensuring that there are adequate yet nonintrusive safeguards in the lives of people who depend on services, are major concerns for administrators, advocates, parents, and people with disabilities. The paper by O'Brien, Lyle O'Brien and Schwartz annotated in the Perspectives section, What can we count on to make and keep people safe?, addresses many current concerns about how and whether quality can be assured. Some of the materials in this section promote the involvement of a range of reviewers or monitors, while others are instruments that can be used by citizen reviewers. It is most difficult to find quality assurance materials that address the concerns raised in the O'Brien et al. piece mentioned above. The irony is that quality assurance systems cannot assure, and may interfere with, the kinds of lives ordinary people want for themselves. Several of these materials acknowledge and discuss these problems and limitations.
TITLE: Reinventing quality - A sourcebook of innovative programs for quality assurance and service improvement in community settings (Rev. ed.)
AUTHORS: Blake, E. M., Prouty, R. W., Lakin, K.C., & Mangan, T.
PUBLICATION INFORMATION: 1994
Minneapolis: Research and Training Center on Residential Services and Community Living, Institute on Community Integration, University of Minnesota.The fourth edition of this sourcebook revises and expands on earlier editions' descriptions of exemplary practices to assure and enhance the quality of service offered to individuals with developmental disabilities. Examples of groups providing exemplary services are divided into the following categories: statewide information and evaluation systems, service agency development, system-wide quality enhancement, values infusion, consumer and citizen monitoring, community relationship building technical assistance, personnel training and professional development, advocacy training and support for individuals and families, best practices, and quality assurance in community supported living. The names and contact information of each of these groups are given.
TITLE: Quality assurance for individuals with developmental disabilities: It's everybody's business
AUTHORS: Bradley, V. J., & Bersani, H. A. (Eds.)
PUBLICATION INFORMATION: 1990
This edited book presents current, often divergent, perspectives on quality assurance. As Elizabeth Boggs points out in the foreword, the book does well at reflecting the chaos in the field of developmental disabilities. If quality assurance is everybody's business, how can the varying perspectives of all the players be reconciled? One very positive feature of the book is its inclusion of consumer and family members' perspectives. These chapters challenge readers to consider how consumers and family members can be meaningfully involved in assessing and assuring the quality of the services they receive. Other chapters address governmental, management, advocacy and accreditation issues, research, and quality assurance systems. A final chapter on the future points to the possibility of developing responsive quality assurance systems, of moving away from the present systems' reliance on basic regulatory approaches, far removed from the people whose lives are affected.
TITLE: Assessment and enhancement of quality services for persons with mental retardation and other developmental disabilities
AUTHORS: Lakin, K. C., Larson, S. A., & Prouty, R.
PUBLICATION INFORMATION: 1994
In M. F. Hayden & B. H. Abery (Eds.), Challenges for a service system in transition: Ensuring quality community experiences for persons with developmental disabilities (pp. 207-230). Baltimore: Paul H. Brookes Publishing Co."People cannot only be degraded when other people care for them, but they can also be degraded if others do not care for them." This chapter will help those interested in promoting quality care for persons with disabilities to reflect on the challenges in developing appropriate quality assurance service practices. Components that the authors feel are important to comprehensive care include individual assessment and outcome monitoring, and promotion of individual choice. Four examples of promising practices in quality assessment and enhancement efforts are also provided.
TITLE: Assistance with integrity: The search for accountability and the lives of people with developmental disabilities
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1993
Lithonia, GA: Responsive Systems Associates. (Available from the Center on Human Policy)Intended to be a polemic, this report focuses on persons with developmental disabilities who rely on service providers for 24 hour assistance. Topics discussed include: the current crises in accountability, barriers to thinking deeply about accountability, effective interdependence as an emerging perspective on the search for accountability, safety and effective interdependence, integrity as a central virtue in effective interdependence, threats to integrity, dealing more effectively with failures of integrity, the potential of "Total Quality Management," and integrity as a guide to policy.
TITLE: Options' policy on quality of life
AUTHOR: Options in Community Living
PUBLICATION INFORMATION: 1983
Options in Community LivingOptions in Community Living, a support service agency for adults living in the community (see annotation for Belonging to the community, in the section on Community Living for Adults), prepared this policy statement to provide staff with standards for evaluating the well-being of people they support and for identifying areas where intervention might be needed. The policy statement is available as part of the manual, Belonging to the community. It covers areas such as personal income, housing, health, safety, appearance and hygiene, relating with others, meaningful activities, and mobility. For each of these areas, the policy identifies conditions that must exist to ensure that a person will not be at risk in the community and conditions that will further promote a valued lifestyle.
22 North Second Street
Madison, WI 53704
TITLE: A guide to program quality review of day programs (2nd ed.)
AUTHOR: Rammler, L.
PUBLICATION INFORMATION: 1986
State of ConnecticutThis quality assurance instrument includes six sets of measures of program quality, including: a) presence and participation measures; b) good relationships measures; c) choice measures; d)respect and dignity measures; c) competence measures, and f) wages and benefits measures. These measures, based on the Connecticut Department of Mental Retardation's overall mission statement, promote values that the department, parents, and people with disabilities in Connecticut identified as important in peoples' lives. The guide includes explanations as to how each question should be applied to a program.
Department of Mental Retardation
90 Pitkin Street
Hartford, CT 06108
TITLE: Quality of life, Volume 1 - Conceptualization and measurement
Quality of life, Volume 2 - Application to persons with disabilities
AUTHOR: Schalock, R. L. (Ed.)
PUBLICATION INFORMATION: 1996
American Association on Mental Retardation (AAMR)"Quality of life [QOL] is not a new concept." Today, what things bring quality to a life are a hot topic in the field of disability, compounded by the fact that QOL is a complex concept with multiple perspectives and dimensions. Schalock tells us that we are in the midst of a "paradigm shift" in the disability field on how we view and interact with people with disabilities. In the first volume, the reader is provided with the opportunity to reflect on the concept of QOL through discussions of self-advocacy, the individual's perspective, QOL across the life span, and parents' and grandparents' perspectives. The measurement of QOL independently and together with the conceptualization of QOL are also examined. The second volume continues with discussion of service delivery, organizational change, public policy application, and QOL and culture.
444 North Capitol Street, NW, Suite 846
Washington, DC 20001-1570
TITLE: PASSING: Program analysis of service systems' implementation of normalization goals
AUTHORS: Wolfensberger, W., & Thomas, S.
PUBLICATION INFORMATION: 1983
The G. Allan Roeher InstituteThis book provides the guidelines for operationalizing the principle of normalization in an instrument for evaluating the quality of human services. In addition, the specific examples and discussion contained in this manual are intended to teach the principle of normalization to human service workers. The 42 PASSING ratings are broken down into two major categories: 1) Program elements related to client social image enhancement and 2) elements related to competency enhancement. Within both categories ratings are further subdivided as to whether they apply to a) the physical setting in which the service is located; b) the ways in which the service groups its clients and otherwise structures and supports relationships between them and other people; c) the activities, programs, and other ways in which the service structures the client's time; and d) miscellaneous other factors including language, symbolism, and imagery which the service attaches to its clients. All in all, the in-depth analysis encouraged by this resource guides the reader through a rigorous examination of any service setting.
Kinsmen Building, 4700 Keele Street
York University
North York, ON M3J 1P3
CANADA
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