The resources in this division are grouped together because they deal directly with services and paid or formal supports, rather than with informal supports and advocacy. They also promote, in general, integration and community participation.
They are divided into the following sections:
This subsection includes brief annotations of some resources on family support. There is a rapidly growing body of literature available today on family support; hence, the material covered here only represents a small portion of that which exists. This listing includes some of the materials that describe current and innovative trends in family support.
TITLE: Family care for persons with developmental disabilities: A growing commitment
AUTHORS: Agosta, J. M., & Bradley, V. J. (Eds.)
PUBLICATION INFORMATION: 1985
Human Services Research InstituteThe report includes five concept papers on family support issues, including a parental perspective, the perspective of a person with a disability, an overview of the goals and purposes of family support services, a review of current options for family support policy, and a future policy directions statement. The appendices include a directory of 22 statewide family support initiatives and 11 organizations that offer parents financial planning services.
2336 Massachusetts Avenue
Cambridge, MA 02140
TITLE: Designing programs to support family care for persons with developmental disabilities: Concepts to practice
AUTHORS: Agosta, J., Bradley, V., Rugg, A., Spence, R., & Covert, S.
PUBLICATION INFORMATION: 1985
Human Services Research InstituteThis report on family support services highlights the trends in the literature, presents the results of a 50 state survey (with case studies of six of the states), and includes information on the development of a family support policy in Virginia. Six key issues surrounding the development of family support services are discussed including the role of the family, program eligibility, service administration, permissible services, use of existing resources and facilities, and program evaluation.
2336 Massachusetts Avenue
Cambridge, MA 02140
The report is written primarily for professionals and service planners who are interested in the status of family support service programs in this country and in the major issues involved in their development.
TITLE: Home care manual series
AUTHOR: American Family Health Institute
PUBLICATION INFORMATION: 1986
Springhouse CorporationThis organization has produced a series of 32 page booklets which outline in clear jargon-free text and illustrations basic procedures in health care. The titles in the series include: Bedsores, Care basics, Cast care, Colostomy care, Comfort measures, Crutches and canes, Danger signs, Dressings and bandages, Exercises, Feeding tubes and pumps, Help for the care giver, Hospital beds, Hygiene, Incontinence care, Injections, Medications, Oxygen therapy, Parenteral nutrition, Self-help aids, Suctioning, Tips for feeding the sick, Tracheostomy care, Urinary catheter care, and Walkers and wheelchairs. These are useful resources for non-medical personnel, family members, and people with special needs themselves.
111 Bethlehem Pike
Springhouse, PA 19477
TITLE: In support of families
AUTHOR: Biklen, D.
PUBLICATION INFORMATION: 1991
In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 35-53). Baltimore: Paul H. Brookes Publishing Co.This chapter describes family supports provided in the Macomb-Oakland area of Michigan from the perspective of families who receive supports. It begins with an introduction to some families and describes some of their perspectives on their children, household work, and professionals. It discusses, from the perspectives of the families, both the positive aspects of the family support program as well as the dilemmas, including mothers' roles, relationships with professionals, intrusiveness of services, and others. It concludes with a list of lessons for family support based on these families' experiences.
TITLE: Parenting under pressure: Mothers and fathers with learning difficulties
AUTHORS: Booth, T., & Booth, W.
PUBLICATION INFORMATION: 1994
Very little is known about the lives and the struggles of parents with learning difficulties. Parenting under pressure gives important insights into what it means to be a parent with a learning difficulty. Using a life story approach, the Booths produce personal accounts that give value to the so often ignored views of mothers and fathers. Life stories of half-a-dozen parents, both mothers and fathers, cover issues such as: parental fitness (disability and "good parenting" are not assumed incompatibilities), the price of support, effective and sensitive support, "ordinary living," community care, rights and citizenship, good parenting, social justice, and discrimination. Readers are reminded that "a parent-child relationship based on love and affection is more easily supported than replaced."
TITLE: Supporting and strengthening families: Volume I - Methods, strategies and practices
AUTHORS: Dunst, C. J., Trivette, C. M., & Deal, A. G. (Eds.)
PUBLICATION INFORMATION: 1994
This collection of papers updates the thinking on enabling and empowering families. "Empowerment implies that many competencies are already present or at least possible. Empowerment implies that what you see as poor functioning is the result of social structure and lack of functioning and a lack of resources which make it impossible for the existing competencies to operate. It implies that in those cases where new competencies need be learned, they are best learned in a context of living life rather than in artificial programs..." Issues discussed include: family support programs; individualized family support plans; family needs, strengths, and resources; and effective help-giving practices.
TITLE: Family support programs for families who have children with severe emotional, behavioral or mental disabilities: The state of the art
AUTHOR: Freud, E.
PUBLICATION INFORMATION: 1990
Human Services Research InstituteThis monograph identifies and explores various approaches to supporting families having children with severe emotional disorders, a group that has traditionally been ignored in discussions of family support. Identifying the core components of family support as self-help, advocacy, parent education, respite care, family centered case management, and cash assistance, the monograph profiles nine programs in seven states. A discussion of the future of family support for this group of families concludes the monograph.
2336 Massachusetts Avenue
Cambridge, MA 02140
TITLE: Supporting families with a child with a disability: An international outlook
AUTHORS: Gartner, A., Lipsky, D. K., & Turnbull, A. P.
PUBLICATION INFORMATION: 1991
This book examines family supports in nine countries, including the U.S., and brings together the areas of family, disability, and culture. It also touches briefly on issues of women and disability. The book begins by discussing how disability has been viewed in different cultures. It gives an overview of families with a child with a disability and has a strong parent versus professional focus. The book discusses basic social welfare and financial assistance, education, emotional support, employment, housing, and recreation in each of the nine countries.
TITLE: Functional life planning for persons with complex needs
AUTHOR: Green-McGowan, K.
PUBLICATION INFORMATION: 1987
KMG CorporationThis manual covers a variety of areas: human anatomy and movement, functional assessment, principles of 24 hour planning, adaptive equipment, environmental modifications, establishing goals and objectives, principles of team planning, and individual services planning, among others. An extremely valuable resource for planning supports for people with complex medical needs.
P.O. Box 2534
Peachtree City, GA 30269
TITLE: Assessment and planning for health professionals
AUTHORS: Green-McGowan, K., & Barks, L. S.
PUBLICATION INFORMATION: 1985
KMG CorporationThe manual is an excellent resource covering such issues as the causes of health risk for people labelled as "medically fragile"; methods of collecting information including interviewing techniques and observation of the person; an evaluation schema for the neurological, musculoskeletal, respiratory, gastrointestinal/urinary, endocrine, behavioral and nutrition/eating systems; and information on the development of health improvement goals.
P.O. Box 2534
Peachtree City, GA 30269
The assessment methodology was developed by KMG Corporation specifically for use with people labelled as "medically fragile" in order to identify and categorize their genuine level of health risk and to focus on the management methodology of improving those risks. The manual is written specifically for health professionals and has limited applicability for non-health professionals.
TITLE: The family as care manager: Home care coordination for medically fragile children
AUTHORS: Kaufman, J., & Lichtenstein, K. A.
PUBLICATION INFORMATION: 1986
Coordinating Center for Home and Community Care, Inc. (CCHCC)This workbook is an extremely valuable tool to assist parents and families in caring for their "medically fragile" child at home. Written clearly and concisely, it provides necessary and practical organizational information, as well as being an educational and informational resource tool.
P.O. Box 613, Severn Professional Building
Millersville, MD 21108
Divided into four sections, Section I, the "Introduction," gives a brief review of what is entailed in a discharge plan, a very thorough needs assessment to be completed by the family, and a redefinition of "care manager." Section II, "Families as Care Managers," describes the five roles which families must assume as
care managers: the role of medical manager, financial planner, educational advocate, resource specialist, and employer. Included within each topic are practical checklists and worksheets. Section III, "Maintenance of Records," explains the need for families to maintain an organized system of record keeping and delineates which information to include in an open file. Section IV, "Conversation with Families: Recurring Themes," lists those themes and concepts that the authors found to be common to families involved in home care for children with severe medical conditions.
TITLE: Come together: The experience of families with severe disabilities or chronic illness
AUTHOR: Knoll, J.
PUBLICATION INFORMATION: 1989
Human Services Research InstituteThis report, prepared under a contract with SKIP of New York, is the story of 48 families in New York, widely diverse in terms of cultural, ethnic, religious, and economic backgrounds but having in common their children with severe disabilities or chronic illnesses. The report is based on a study conducted for two reasons: to understand the families' experience and to communicate that experience to policy makers and service providers, and to evaluate a case management and advocacy service provided to the families by Sick Kids (need) Involved People (SKIP) of New York, Inc. This resource is one of the few that report families' experience in such rich detail, and is a "must read" for people interested in services for these families.
2336 Massachusetts Avenue
Cambridge, MA 02140
TITLE: Family support services in the United States: An end of decade status report
AUTHORS: Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J., & Blaney, B.
PUBLICATION INFORMATION: 1990
Human Services Research InstituteThe first section of this document provides an historical context for family support, provides a synthesis of state family support efforts, and concludes by delineating some of the key issues surrounding the development of family support, including the need for supports which are family centered, culturally sensitive, community based, and well coordinated. The second section contains a description of family support activities in each state.
2336 Massachusetts Avenue
Cambridge, MA 02140
TITLE: Health care issues for children with special health needs and disabilities
AUTHORS: Lehr, S., & Taylor, S. J.
PUBLICATION INFORMATION: 1987
Technical Assistance for Parent Programs (TAPP)This manual was developed as a resource for parents of children with special health needs or disabilities. The manual is designed to encourage parents to be the managers of their child's care and treatment, and to work collaboratively with health care practitioners for the benefit of the child. Section I outlines some of the key issues relating to the provision of health care and treatment for children with chronic illness and disabilities. Section II is a series of handouts that could be given to parents. Section III includes an overview of the Collaboration between Parents and Health Professionals (CAPP) Project and a reprint of the issue from Coalition Quarterly on health care issues. The last section refers the reader to additional resources.
Federation for Children with Special Needs
Suite 104, 95 Berkeley Street
Boston, MA 02116
TITLE: A license doesn't make you smart, or working with the "helping" professions
AUTHORS: McGowan, K. G., & McGowan, J. (Eds.)
PUBLICATION INFORMATION: 1993
SKIP of New York, Inc.This is a manual for professionals who work with children with complex medical needs. It starts with assumptions that many professionals need to learn how to support children and families so that the children can live at home. It states specifically that attitudes shape behavior, and that many professionals receive very little training in the area of developmental disabilities. The authors look specifically at issues of adaptive equipment and obstacles that people may have to deal with, and show concrete ways to address these issues. In addition, there is a chapter on case management and how to provide services that let the individual control his or her environment. Finally, there is a long list of resources that includes books, other manuals, and vendors for all of the topics discussed.
545 Madison Avenue, 13th Floor
New York, NY 10022
TITLE: Down syndrome: Living and learning in the community
AUTHORS: Nadel, L., & Rosenthal, D. (Eds.)
PUBLICATION INFORMATION: 1995
Wiley-Liss, Inc.This edited book from the National Down Syndrome Society explores the community experiences of people with Down syndrome. It gives an overview of the latest medical advances which prolong lives of people with Down syndrome, provides information about programs and services, and provides personal accounts from young adults with Down syndrome. The book is divided into seven sections, with topics including parents' perspectives, family supports, language and cognitive development, behavior, education, health care advances, and independent living and other meaningful employment. The book's aim is to provide a tool for parents and health care professionals so they can better assist people with Down syndrome to deal with any problems they may face and to participate to the fullest extent in community life.
605 Third Avenue
New York, NY 10158-0012
TITLE: Michigan Department of Mental Health report on Family Support Subsidy Program FY 85-86
AUTHORS: Parrott, M. E., & Herman, S. E.
PUBLICATION INFORMATION: 1987
Michigan Department of Mental HealthThis paper describes Michigan's family support subsidy program in detail. The subsidy is one piece of an overall policy of family preservation which includes family supports and permanency planning. Permanency planning is the philosophy which provides the framework for service delivery. The underlying assumption in permanency planning is that children need parents, a home, and other family members with whom to interact. The subsidy provides financial support to families who have children with severe handicaps. It currently serves 2,700 families. The report provides results of an evaluation of the program. These results indicate that families have found the program helpful in meeting the special needs of their child and the family as a whole and that community mental health boards noted few problems in identifying eligible children. The program has been successful in averting some out-of-home placements and has been a factor in the return home of some children. For those children who have been placed out-of-home, the Department's policy of permanency planning is resulting in efforts toward reunification of families or the establishment of alternative permanent homes for children.
Lewis Cass Building
Lansing, MI 48926
TITLE: Mealtimes for severely and profoundly handicapped persons: New concepts and attitudes
AUTHORS: Perske, R., Clifton, A., McLean, B. M., & Stein, J. I.
PUBLICATION INFORMATION: 1986
The term Mealtimes is an apt title for this marvelously written and useful book. This book does not simply describe proper "feeding" techniques for people with severe and multiple disabilities. It shows how mealtimes can be designed to be pleasant and enjoyable experiences.
Sensitively written and superbly edited, this book is a collection of articles by professionals, parents, people with disabilities, administrators, and others. The book starts out with an introduction written by Robert Perske entitled, "A Gentle Call to Revolution." Perske sets the tone for the book in this introductory chapter by stressing the need for "dignity, kindness, cooperation, and skill." The remainder of the book is divided into four sections: Value of Mealtimes, Creative Interactions, Creative Uses of People, and Helpful Settings.
This is not intended to be a how-to-do-it handbook. Instead, the purpose is "to allow a wide range of people to speak plainly about the fresh attitudes they have developed about mealtimes and the innovative things they are trying to do." Anyone who works with people with severe and multiple disabilities should read this book. Parents, caregivers, and agency administrators will find it especially useful.
TITLE: Your child and health care: A "dollars & sense" guide for families with special needs
AUTHOR: Rosenfield, L. R.
PUBLICATION INFORMATION: 1994
This is a comprehensive and easy to read book for families of children with disabilities or chronic health care needs, and for professionals to utilize too. This how-to guide starts with the rights of parents and their children, with references to relevant legislation and court cases. It gives a wealth of information on the federal and state level, and gives sources of financial assistance, including federal assistance such as SSI and AFDC. There is also an extensive glossary for the numerous terms used throughout the book (and that professionals use exclusively) and a bibliography for further reading.
TITLE: "Like an angel that came to help us": The origins and workings of New Hampshire's family support network
AUTHOR: Shoultz, B.
PUBLICATION INFORMATION: 1993
This report reviews the history of family activism in New Hampshire, the activities of the legislative Task Force on Family Support, and the establishment of a Family Support Network consisting of a Family Support Council in each of New Hampshire's twelve regions for serving people with developmental disabilities. This report also describes the workings of the Councils and the Network, raises issues for discussion, and concludes with lessons to be drawn and implications for other states. It is based on document review, and in-depth interviews with key players.
TITLE: Support for caregiving families: Enabling positive adaptation to disability
AUTHORS: Singer, G. H. S., & Irvin, L. K. (Eds.)
PUBLICATION INFORMATION: 1989
This edited book covers a broad range of issues related to supporting families. Chapters include discussions of family strengths, value-based services, coping skills, informal social support, and various kinds of formal support such as respite care, cash assistance, early intervention, counseling, and many other formally arranged supports. The final chapters have to do with evaluation and policy development.
TITLE: Redefining family support: Innovations in public-private partnerships
AUTHORS: Singer, L. E., Powers, L. E. , & Olson, A. L.
PUBLICATION INFORMATION: 1996
"Families need comprehensive and flexible support to enable them to lead balanced lives while meeting the needs of a family member who has a disability." In recognition of this need, states are increasingly, but slowly, implementing more family-centered approaches in the design and implementation of supports to individuals with special needs and their families. Redefining family supports is one in a series of books whose purpose is to provide a forum for contemporary work on the challenges and issues that families face and various effective ways of supporting families with a member with a disability. In this particular book, the focus is on innovations and public-private partnerships in family supports. Specific topics include: trends affecting home and community care for people with chronic conditions, development of standards and measurement of practice in family supports programs, family empowerment, primary prevention, the aging family from a multigenerational perspective, early intervention, family support in cases of neglect and abuse, family support in child and adult mental health, the role of education in community supports, and family and consumer activism.
TITLE: Families to families: An introduction to the home care experience
AUTHORS: SKIP of Maryland, Inc. & SKIP National
PUBLICATION INFORMATION: 1988
SKIP NationalSick Kids (need) Involved People (SKIP), a national organization of parents and professionals involved in home care for children with complex medical needs (often including dependence on medical equipment like ventilators or apnea monitors), has produced this manual for parents. There are chapters on thoughts and feelings, dealing with the hospital, discharge planning, common problems, community integration, and references to resources. This is an excellent resource for families and caring staff persons.
500 East 83rd Street, Suite # 1B
New York, NY 10028
TITLE: "Children's Division is coming to take pictures": Family life and parenting in a family with disabilities
AUTHOR: Taylor, S. J.
PUBLICATION INFORMATION: 1995
In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experiences: Qualitative studies of family and community life (pp. 23-45). Baltimore: Paul H. Brookes Publishing Co."Children's division is coming to take pictures" tells the story of the Duke family. The outside world views the Dukes in terms of mental retardation, physical disabilities, seizures, emotional, and mental disorders; a family in which both the parents and the children have mental retardation. The Dukes, on the other hand, see themselves as loving, caring parents who have worked hard to advocate for, and support, their children. Resourceful people, the Dukes believe strongly in kin supporting and helping one another as a means of coping with their marginal economic and social status.
Using the Dukes as his focus, Taylor discusses parenting issues related to parents with disabilities, and concludes with a number of important lessons for human service providers, including: how best to provide support, what types of supports may be useful, and thoughts on when and where to intervene on the behalf of children.
TITLE: Community living in three Wisconsin counties
AUTHOR: Taylor, S. J.
PUBLICATION INFORMATION: 1991
In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 55-70). Baltimore: Paul H. Brookes Publishing Co.Wisconsin has a history of innovation in support services for children and adults with developmental disabilities. This chapter examines examples of this innovation within three counties, Dane, LaCrosse, and Columbia. It describes aspects of county leadership that promote community integration for people with severe disabilities; case management practices that support integration; and family support strategies.
TITLE: Towards families for all children
AUTHOR: Taylor, S. J.
PUBLICATION INFORMATION: 1991
In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 19-34). Baltimore: Paul H. Brookes Publishing Co.Michigan has a reputation as a national leader in the depopulation of institutions for people with developmental disabilities and the support of children and their families. This has been the result of a combination of factors. This chapter examines some of these factors. It begins by reviewing the Michigan Family Subsidy Act, which provides cash subsidies to families of children with severe disabilities. The author then discusses the philosophy of permanency planning, which has been key to designing supports for children to live with families. Next, the chapter provides some background information on community mental health programs in the state. Within the state, the Macomb-Oakland Region has been exceptional in its efforts toward deinstitutionalization and support of families. The chapter concludes with a detailed description of some aspects of this region's success, including the leadership and commitment, as well as the support for foster families for children with severe and multiple disabilities who are not living with natural or adoptive families.
TITLE: A mother's work is never done: Constructing a "normal" family life
AUTHOR: Traustadottir, R.
PUBLICATION INFORMATION:
In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experiences: Qualitative studies of family and community life (pp. 47-65). Baltimore: Paul H. Brookes Publishing Co.Like any other family, families of children with disabilities also try to "lead ordinary lives." Past studies of how these families construct "normal" lives have been based on a traditional view of the mother within the family. Here, mothers' "naturalness" in constructing "normal" lives in the face of deviance, is not taken for granted. Rather, this study analyzes the "gendered organization of the work of constructing and maintaining a normal family life." Drawing on the results of in-depth interviews with 26 mothers and 5 fathers of children with disabilities, Traustadottir considers the themes of: being part of the family; parents' conception of ordinary family life; disability and the construction of gender; disability service issues; family image; and class, race, and family life.
TITLE: Technology and children with disabilities: A guide for family members
AUTHOR: Turnbull, H. R.
PUBLICATION INFORMATION: 1989
Beach Center on Families and DisabilityThis booklet describes two federal laws in lay terms: P.L. 100-407, the Technology-Related Assistance for Individuals with Disabilities Act of 1988, and P.L. 100-360, the Medicare Catastrophic Coverage Act of 1988 (repealed late in 1989).
Bureau of Child Research
4138 Haworth Hall
Lawrence, KS 66045
TITLE: Family support bulletin
AUTHOR: United Cerebral Palsy Associations
PUBLICATION INFORMATION:
UCPA Governmental Activities OfficeThe Family support bulletin published its first issue in Summer 1987. Its threefold purpose is: (1) to be a source of information, research, policy and practice regarding supports for families having children with severe disabilities; (2) to solicit comments, articles, successes, and failures in family support services; and (3) to develop a national network of people committed to assuring the development of consistent policies in the private and public sector supporting families.
1522 K Street N.W., Suite 1112
Washington, DC 20005
TITLE: Technology-dependent children: Hospital vs. home care--A technical memorandum
AUTHOR: U.S. Congress, Office of Technology Assessment
PUBLICATION INFORMATION: 1987
U.S. Government Printing OfficeThis report is an effort to provide Congress with the data necessary to examine issues surrounding care for the increasing number of children who are in need of on-going nursing care or medical technology in order to survive. It begins by looking at various definitions of this population and discussing how the definition affects any efforts to project long-term need for services. It offers a definition and then makes projections based on that definition. The next section examines the comparative effectiveness and cost of hospital versus home-based care. The general conclusion here is that home care can be as effective in the medical-technical realm as hospital care of most conditions and it tends to be more cost effective. However a number of potential problems inherent in "pushing" home care (e.g., placing unrealistic demands on families who are not up to them) are highlighted. The final section discusses sources of financing for home based care. There are major discussions of private insurance and a great deal of information on the range of Medicaid waiver programs (at the time data was collected in mid-1986). There are also sections dealing with other programs which pay for home care. This report is essential reading for anyone who wishes to be informed on this issue.
Washington, DC 20402-9325
(GPO # 052-003-01065-8)
TITLE: Family supports for children with severe disabilities and chronic illnesses
AUTHOR: Walker, P.
PUBLICATION INFORMATION: 1991
In S. J. Taylor, R. Bogdan, J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 71-81). Baltimore: Paul H. Brookes Publishing Co.
This chapter focuses on some of the positive family support practices in Maryland, especially for families whose children have severe disabilities and chronic illnesses. The chapter begins with an overview of three agencies. It then describes some aspects of individualized and flexible supports for children and families, including those related to medical needs as well as personal support. The chapter also discusses strengths associated with using a team approach to family support, the idea of "service coordination" versus case management with the connotation of "managing" families, and issues related to advocacy and empowerment.
TITLE: Family support program: Guidelines and procedures
AUTHOR: Wisconsin Department of Health and Social Services
PUBLICATION INFORMATION: 1985
Wisconsin Department of Health and Social ServicesThis report gives a detailed description of Wisconsin's family support program, including: an overview (purpose, available services, etc.) of the program; the development of individualized family service plans; and administration of the program. Appendices include family support legislation, as well as samples of various program forms (i.e., family questionnaire, application for services, etc.).
One West Wilson Street
P.O. Box 7851
Madison, WI 53707
The materials in this subsection discuss the concept of permanency planning for children with developmental disabilities, from the point of view that all children need a permanent family. Permanency planning strategies include a "whatever it takes" approach to family support, family reunification efforts, and adoption or permanent foster care for children who cannot return to live with their birth families. For additional information on permanency planning, see two articles annotated in the previous section: Parrott & Herman (1987) and Taylor (1991).
TITLE: Parents for children, children for parents: The adoption alternative
AUTHOR: Glidden, L. M.
PUBLICATION INFORMATION: 1989
American Association on Mental Retardation (AAMR)This book is based on interviews with families into which children with developmental disabilities have been adopted and with agency workers responsible for arranging such adoptions. The book is organized to follow the steps in the birth and adoption process, giving many facts and statistics in each chapter. This is a good resource for agencies thinking about providing for adoption for children with disabilities.
444 North Capitol Street, NW, Suite 846
Washington, DC 20001-1570
TITLE: Permanency planning practice for children with developmental disabilities within the Michigan mental health system: A manual for trainers
AUTHOR: Michigan Department of Mental Health in cooperation with Spaulding for Children
PUBLICATION INFORMATION: 1987
Community ServicesThis training manual is designed to build commitment by staff of mental health and developmental disabilities agencies to the philosophy of permanency for children with developmental disabilities. This philosophy includes a commitment to maintaining children in families, whether birth or alternative families, in order that the child may have permanent ties and relationships. The manual is divided into ten units, with each unit serving as the basis for a training session of one-half to one day in length. The units include: 1) Preparing to train; 2) Gaining administrative and managerial support; 3) Permanency planning: What? Why? How?; 4) The bonding experience; 5) Aggressive, decisive case management; 6) Developmental assessment and preparation; 7) Family assessment in the mental health system; 8) Preservation and reunification practice; 9) Adoption of children with developmental disabilities; 10) Lifespan advocacy. This is an excellent resource for anyone interested in children.
Michigan Department of Mental Health
Lewis Cass Building
Lansing, MI 48926
TITLE: Annotated bibliography: Permanency planning (P.L. 96-272)
AUTHORS: Petr, C. G., Zollars-White, J., Garlow, J., Turnbull, H. R., III, &
Roessier, J. A.
PUBLICATION INFORMATION: 1990
Beach Center on Families and DisabilityThere are three parts to this annotated bibliography on permanency planning: (1) an annotated outline of background and issues related to P.L. 96-272, The Adoption Assistance and Child Welfare Act of 1980; (2) annotation of articles related to adoption of children with special needs; and (3) a broader listing of additional resources related to permanency planning and adoption.
Department of Special Education and
Bureau of Child Research
The University of Kansas
3111 Haworth Hall
Lawrence, KS 66045-0048
TITLE: Permanency planning in Michigan: From philosophy to reality
AUTHORS: Shoultz, B., O'Connor, S., Hulgin, K., & Newman, P.
PUBLICATION INFORMATION: 1994
This report begins with an overview of the permanency planning philosophy and a description of permanency planning services in the developmental disabilities system and mental health system in Michigan. Based on interviews with families, the report then discusses families' experiences with the implementation of permanency planning services and related issues and challenges for service providers.
TITLE: Permanency planning for children with developmental disabilities in Pennsylvania: The lessons of Project STAR
AUTHORS: Taylor, S. J., Racino, J. A., Walker, P., Lutfiyya, Z. M., & Shoultz, B.
PUBLICATION INFORMATION: 1992
This report examines the lessons for state and county policy on "permanency planning" and "special needs adoption" for children with disabilities based on the experience of Project STAR in Pittsburgh, Pennsylvania. It is divided into three major parts. Part I reviews the history and experience of Project STAR. Part II examines the policy context in which Project Star operates. Part III addressees policy issues that have an impact on Project STAR's mission and contains policy recommendations based on this review.
The emerging approach to "community living" for adults with disabilities may be called an "individualized," "person-centered" or "housing/support strategy" approach. Essentially, this approach looks at housing and support as basic needs that people have. This approach reflects the tradition of packing housing and support together along a continuum of residential services. The most important part of a housing/support approach is to start with the person and his or her preferences for how, where, and with whom he or she would like to live. This means a person would (1) have individually tailored and flexible supports available wherever he or she chooses to live; (2) have the option to rent or own his or her own home; and (3) have choices in all aspects of life from major decisions, such as the location of the home, to more minor decisions such as scheduling staff time. This approach to housing and support services, of course, needs to be embedded in the broader context of community, family, relationships, and so forth. For resources in this area, please see the other bibliography sections, such as those in the "Beyond Paid Services and Supports" division of this bibliography and those in the "Planning and Developing Supports with Individuals" section.
The subsections below contain materials that discuss housing and support for community living as well as some materials more specifically oriented toward housing issues.
TITLE: Community living for adults
AUTHOR: Center on Human Policy
PUBLICATION INFORMATION: 1989
This newsbulletin presents and summarizes some concepts related to supported living. It includes stories which describe the lives of a number of individuals who are living in their own homes and apartments and gives an overview of several agencies that have adopted an individualized approach to services. Though much has changed in the area of supported living since the development of this bulletin, its contents are still relevant.
TITLE: Self-directed attendant services: Toward a consumer oriented policy and perspective on personal support services
AUTHOR: Centre for Research and Education in Human Services
PUBLICATION INFORMATION: 1990
TITLE: Innovation in the way people with disabilities can be supported to live and participate in community life
AUTHOR: Chernets, G.
PUBLICATION INFORMATION: 1995
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
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: Belonging to the community
AUTHOR: Johnson, T. Z.
PUBLICATION INFORMATION: 1985
The six sections of the manual include: 1) an overview of the Options program, with particular emphasis on the values which guide it and how it has changed over time; 2) a description of this agency's administrative structure, including the definitions of various administrators' roles, funding considerations, and consumer participation; 3) a review of Options' staff organization with clear descriptions of its team approach, various staff positions (including overviews of a typical day in the life of various staff members), and procedures for staff hiring, training, and evaluation; 4) an examination of the fundamental principles which guide this agency's service practice and a review of the processes used to plan, implement, and evaluate activities on behalf of each individual served by it; 5) a discussion of how an agency can aid someone's integration into the community with special attention given to major dilemmas, strategies, issues of relationship building, and advocacy for change in the community; and 6) an analysis of how services are adapted to meet the needs of "special populations," including people with physical disabilities, people with significant learning problems, and people with challenging behaviors. Each paper is supplemented with a variety of useful materials which rum the gamut from maps and budgets to job descriptions, assessment forms, and policy statements.
The entire manual is useful, but the final three sections provide instructive, thought provoking reading for anyone involved in supporting people with severe disabilities in the community. It is particularly refreshing to find a resource which directly recognizes the difficult issues of autonomy, choice, risk, and relationship building which emerge when an agency is truly committed to facilitating the integration of individuals into the community.
TITLE: Carrying Options' story forward: Final report of an assessment of Options in Community Living
AUTHORS: Johnson, T., & O'Brien, J.
PUBLICATION INFORMATION: 1987
TITLE: Case studies of six state personal assistance service programs funded by the Medicaid personal care option
AUTHORS: Kennedy, J., & Litvak, S.
PUBLICATION INFORMATION: 1991
TITLE: Get me the hell out of here: Supporting people with disabilities to live in their own homes
AUTHOR: Klein, J.
PUBLICATION INFORMATION: 1992
TITLE: IMPACT: Feature issue on supported living
AUTHORS: Lakin, K. C., & Smull, M. (Eds.)
PUBLICATION INFORMATION: 1995
In this issue of IMPACT, leaders in the development of supported living describe the challenges, issues, and accomplishments of this movement. Articles describe projects and efforts at the national, state, agency, and individual level. Also included are resources related to these efforts.
TITLE: A checklist for evaluating personal assistance services (PAS) policies and programs
AUTHORS: Lyle O'Brien, C., & O'Brien, J.
PUBLICATION INFORMATION: 1992
This checklist was compiled in conjunction with individuals from a number of advocacy and activist groups for persons with disabilities. The list will help individuals evaluate personal assistance services (PAS) by breaking down the three broader areas of availability, comprehensiveness, and controllability.
TITLE: Personal assistance services for persons with mental disabilities
AUTHOR: Nosek, M. A.
PUBLICATION INFORMATION: 1990
TITLE: Supported living: What's the difference?
AUTHOR: O'Brien, J.
PUBLICATION INFORMATION: 1993
In this article O'Brien distinguishes between supported living and other service approaches. He argues that understanding supported living requires a reconsideration of assumptions and behavior toward people with disabilities. The article begins with descriptions by service providers, who have pioneered the approach, of experiences which have enabled them to step outside the assumptions and practices that usually govern service providers. This is followed by the identification of issues that should govern supported living services and a concluding list of the obligations of service providers to individuals and their friends and families.
TITLE: Living with the questions: Notes from a gathering of people concerned with supported living
AUTHORS: O'Brien, J., & Lyle O'Brien, C.
PUBLICATION INFORMATION: 1995
This report was generated from a gathering of innovators in the supported living movement including: people with disabilities, family members, service providers, and system managers. Participants in the gathering drew upon their experiences to describe issues related to supporting people to live in their communities. Their experiences provide an in-depth understanding of this process. Topics include contradictions with system rules, how support makes a difference in people's lives, concerns in the day to day work of service providers, and strategies for growth of supported living. The report ends with reflections by several participants.
TITLE: Settling down: Creating personal supports for people who rely on the residential support program of Centennial Developmental Services
AUTHOR: O'Brien, J., & Lyle, C.
PUBLICATION INFORMATION: 1989
TITLE: From behind the piano: The building of Judith Snow's unique circle of friends
AUTHOR: Pearpoint, J.
PUBLICATION INFORMATION: 1990
TITLE: Housing, support, and community: Choices and strategies for adults with disabilities
AUTHORS: Racino, J. A., Walker, P., O'Connor, S., & Taylor, S. J. (Eds.)
PUBLICATION INFORMATION: 1993
This book provides an in-depth look at and analysis of the issues related to supporting adults with disabilities to live in their own homes. It is divided into three parts. In Part I, several chapters address the complexities of a housing and support approach compared with traditional approaches. Issues discussed here include the importance of separating housing and support, choice and decision-making, support versus supervision, and changing roles of organizations.
Parts II and II of this book provide personal and organizational perspectives related to housing and support efforts. Part II consists of four essays, including one by a parent , one by a person who has provided personal care attendant services, and two by individuals with disabilities, which provide first hand accounts of the challenges and opportunities afforded by a housing and support approach. The last part of this book contains five case studies of organizations that have implemented the concepts and principles discussed in Part I.
TITLE: Regenerating a community: The story of Residential Inc.
AUTHOR: Shoultz, B.
PUBLICATION INFORMATION: 1993
TITLE: Life in the community: Case studies of organizations supporting people
with disabilities
AUTHORS: Taylor, S.J., Bogdan, R., & Racino, J.A. (Eds.)
PUBLICATION INFORMATION: 1991
This book is a collection of case studies of organizations supporting people with disabilities. The case studies are based on site visits utilizing qualitative research methods. They are part of a study focused on identifying positive examples of agencies providing individualized supports. Several of the case studies focus on supports for adults. The editors conclude with a chapter summarizing some of the key characteristics of responsive organizations, including: shared values, openness to change, committed and caring leadership, and sensitivity to social issues.
TITLE: Supports for community living: A case study
AUTHOR: Traustadottir, R.
PUBLICATION INFORMATION: 1991
This report is based on a qualitative study which examines in detail the supports provided to one individual with severe disabilities and the role of this support in enabling him to become part of community life.
TITLE: A step-by-step guide to training and managing personal attendants
AUTHORS: Ulicny, G. R., Adler, A. B., et al.
PUBLICATION INFORMATION: 1987
Both of these manuals are styled in an easy-to-read and friendly format. The first manual is written for the consumer and was developed by a group of people experiencing disabilities. The second manual, which is an agency guide, focuses on enabling the consumer to regulate the use of their PCAs, as much as possible, while providing back-up support to ensure that quality standards are being met. The agency manual is an addendum to the consumer guide.
TITLE: Not just a place to live: Building community in Toronto
AUTHOR: Walker, P.
PUBLICATION INFORMATION: 1997
While many people with disabilities now live in housing cooperatives, this alone does not necessarily mean that they are part of the coop community. This case study describes the intentional creation of two inclusive housing cooperatives by a group of people with and without disabilities. Additionally, this effort involved the formation of NABORS, an organization designed to support the participation of coop members with disabilities. The report describes various aspects of coop formation, such as the Board structure, mission and values, membership issues, and funding issues. It also describes ideas and strategies to promote social inclusion, not just physical inclusion.
TITLE: Standing in support, not control: Training Toward Self-Reliance,
Sacramento, CA
AUTHOR: Walker, P.
PUBLICATION INFORMATION: 1997
This is a case study of Training Toward Self-Reliance, an agency in Sacramento, California. It describes the agency's support of people with developmental disabilities, in particular: (1) support for parents who have disabilities; (2) support for people with developmental disabilities to manage their own personal care attendant services; and (3) support for people who experience multiple social problems and difficulties in addition to disability (e.g., homelessness, poverty, abuse). This report describes some of the lessons learned by agency staff as well as changes they have made, over time, in order to better support people, in individualized ways, to be a part of their community.
TITLE: Personal perspectives on personal assistance services
AUTHORS: Weissman, J., Kennedy, J., & Litvak, S. (Eds.)
PUBLICATION INFORMATION: 1992
TITLE: Personal assistance services: A guide to policy and action (2nd ed.)
AUTHOR: World Institute on Disability
PUBLICATION INFORMATION: 1992
The resources in this section deal with a variety of creative options that can be used to purchase or subsidize rents for ordinary (rather than segregated or specialized) housing in the community, including apartments, houses, condominiums, and housing cooperatives. Some information is included on adapting or building housing to meet the needs of people with physical disabilities.
TITLE: A survey of housing trust funds and A guide to developing a housing trust fund
AUTHOR: Center for Community Change
PUBLICATION INFORMATION: 1989, January
TITLE: Cooperative housing: People helping each other
AUTHORS: Cooperative Housing Foundation and National Association of Housing Cooperatives
PUBLICATION INFORMATION:
National Association of Housing Cooperatives
TITLE: Guidebook on consumer controlled housing
AUTHORS: Field, T., & Lakin, K. C.
PUBLICATION INFORMATION: 1995
This guidebook outlines basic principles, considerations, and service strategies in choosing and securing consumer controlled housing for persons with developmental disabilities. It also includes information on assessing the need for and obtaining home modification planning for long-term supports and source of assistance.
TITLE: Working with non-profit developers of affordable housing to provide integrated housing options for people with disabilities
AUTHOR: Housing Technical Assistance Project
PUBLICATION INFORMATION: 1989
NAHB/National Research Center
TITLE: Hands-on housing: A guide to mutual housing associations and community land trusts for residents and organizers
AUTHORS: Hovde, S., & Krinsky, J.
PUBLICATION INFORMATION: 1996
Hands-on housing is a practical guide to help tenants and community activists survive the difficulties, and to explore the possibilities, of two new types of housing organizations, namely, Mutual Housing Associations and Community Land Trusts. Both housing organizations are non-profit and produce and maintain long term low-and moderate-income housing. Stories of the successes and failures of twenty such housing organizations are told and practical suggestions for maintaining "effective resident-community partnerships" are provided.
TITLE: The community land trust: A new system of land tenure
AUTHOR: Institute for Community Economics
PUBLICATION INFORMATION: 1986, June
TITLE: Your place or mine?: A handbook for home ownership
AUTHORS: Laux, B., & Moran-Laux, C.
PUBLICATION INFORMATION:
TITLE: A survey of legal and financial planning issues in the Home of Your Own (HOYO) Project
AUTHOR: Macintosh, J. D.
PUBLICATION INFORMATION: 1994
TITLE: Extending the American dream: Home ownership through creative financing
AUTHOR: New Hampshire Home of Your Own Project
PUBLICATION INFORMATION: 1995
TITLE: Housing for people with severe disabilities: A collection of resource materials
AUTHORS: Prepared by O'Connor, S., & Racino, J. A. Updated by Hulgin, K., Walker, P., Fisher, E., Handley, M., & Shoultz, B.
PUBLICATION INFORMATION: 1995
This packet is an update of a 1990 information package and provides an introduction to housing strategies such as trusts, co-operatives, and subsidies. It offers information about organizations and other resources that should be helpful to individuals, their families, advocates, and service providers in the effort to develop home ownership opportunities.
TITLE: Housing policy and persons with mental retardation--A report of the working group on housing to the Presidential Forum: The President's reform agenda and people with mental retardation and the President's Committee on Mental Retardation
AUTHOR: President's Committee on Mental Retardation
PUBLICATION INFORMATION: 1995
TITLE: In search of housing: Creative approaches to financing integrated housing
AUTHORS: Randolph, F., Laux, R., & Carling, P.
PUBLICATION INFORMATION: 1987
TITLE: Housing is for everyone: Affordable homes for people with disabilities
AUTHOR: Raymond, B.
PUBLICATION INFORMATION: 1992
TITLE: Coming home: Ex-patients view housing options and needs: Proceedings of a national housing forum
AUTHOR: Ridgway, P. (Ed.)
PUBLICATION INFORMATION: 1988
TITLE: From a community residence to a home of their own
AUTHOR: Walker, P.
PUBLICATION INFORMATION: 1995
This report describes how the Syracuse Developmental Services Office in Syracuse, New York facilitated the process of home ownership for two women previously living in a community residence. The first part focuses on strategies for achieving home ownership, including collaboration with a local housing agency, financing, and how the mortgage company was approached. The second part of the paper discusses how in-home supports were arranged in order to assist the women to live in their home. The paper concludes with a summary of key factors that made this move possible.
TITLE: Community sponsorship of housing cooperatives
AUTHOR: Wilcox, R.
PUBLICATION INFORMATION: 1987
A MHA is housing produced, owned and operated by a not-for-profit, public interest organization where those who develop the housing and those who will live in it join together in membership. The MHA is the umbrella organization that then can sponsor single and multifamily non-profit cooperatives, condominiums and rental housing. The booklet is brief and offers a good overview of some basic questions related to housing cooperatives.
From the massive literature on supporting people with challenging behavior, we have selected a very small number of resources. Our criterion for selection was adherence to the guidelines of TASH on intrusive interventions, which read as follows:
Whereas, in order to realize the goals and objectives of TASH, including the right of each severely handicapped person to grow, develop, and enjoy life in integrated and normalized community environments, the following resolution is adopted:
Whereas, TASH supports a cessation of the use of any treatment option which exhibits some or all of the following characteristics: 1) obvious signs of physical pain experienced by the individual; 2) potential or actual physical side effects, including tissue damage, physical illness, severe stress, and/or death, that would properly require the involvement of medical personnel; 3) dehumanization of persons with severe handicaps because the procedures are normally unacceptable for nonhandicapped persons in community environments; 4) extreme ambivalence and discomfort by family, staff, and/or caregivers regarding the necessity of such extreme strategies or their own involvement in such interventions; and 5) obvious repulsion and/or stress felt by nonhandicapped peers and community members who cannot reconcile extreme procedures with acceptable standard practice;
Resolved, that The Association for Persons with Severe Handicaps' resources and expertise be dedicated to the development, implementation, evaluation, dissemination, and advocacy of educational and management practices which are appropriate for use in integrated environments and which are consistent with the commitment to a high quality of life for individuals with severe handicaps.
TITLE: Sometimes you just want to feel like a human being: Case studies of empowering psychotherapy with people with disabilities
AUTHORS: Blotzer, M., & Ruth, R.
PUBLICATION INFORMATION: 1995
Case studies of psychodynamic counseling with children and adults labeled developmentally disabled demonstrate behavioral changes and improved life satisfaction resulting from interventions. Although the psychotherapeutic perspective provides for some unusual interpretations of behaviors and their meanings (e.g., "...this was the only way [client] could cope with massive losses without decompensating into psychosis" [p. 16]) this perspective allows for the fact that some behaviors are relatively fixed. Thus accommodations, not remediation, are often acknowledged as the most fruitful approach to many problems. The book opens new avenues for thinking in an area of psychology that has been dominated by behaviorism for three decades.
TITLE: Severe learning disabilities and challenging behaviors
AUTHORS: Emerson, E., McGill, P., & Mansell, J.
PUBLICATION INFORMATION: 1994
TITLE: An educative approach to behavior problems: A practical decision model for interventions with severely handicapped learners
AUTHORS: Evans, I. M., & Meyer, L. H.
PUBLICATION INFORMATION: 1985
This book presents a decision model, accompanied by detailed procedures for implementation, for dealing with the excess or problem behavior of persons with severe disabilities in a functional and adaptive way. Practitioners are provided with a practical, step-by-step model for planning interventions with people who have severe problem behaviors in the context of habilitative, community-based programs across the school years and beyond. Separate chapters describe current "most promising practices" in educational curricula for learners with severe handicaps into which this approach should be integrated; the empirical research base on causes of and interventions with severe behavior problems; a field-tested decision model to select priority intervention goals within the context of the IEP; strategies to intervene with excess behavior in normalized, community environments; and evaluation principles and procedures to judge the significance of interventions. Each of the procedures and strategies described in the book have been demonstrated to be effective in integrated, community settings, and all are consistent with the TASH resolution on intrusive interventions.
TITLE: Use of aversive procedures with persons who are disabled: An historical review and critical analysis
AUTHORS: Guess, D., Helmstetter, E., Turnbull, H. R., & Knowlton, S. (Ed. by P. Campbell, with Epilogue by F. Laski)
PUBLICATION INFORMATION: 1987
This monograph will be most useful to policymakers, researchers, and others who are involved in the controversy surrounding the use of aversive procedures with people with disabilities. Those who oppose aversives generally will find support for their position, although the authors concentrate on analyzing aversive interventions rather than demonstrating the feasibility of alternatives. A strength of this manual from one perspective is a weakness from another. The authors attempt to provide an objective and balanced analysis of the issues relating to the use of aversives. If anything, they understate the case against aversive procedures. While this approach may be effective in reaching people undecided in the controversy, the manual lacks a sense of moral outrage at the punishment and pain too often inflicted upon people with disabilities.
TITLE: Behaviour self!: Using behavioural concepts to understand and work
with people with developmental disabilities
AUTHOR: Hingsburger, D.
PUBLICATION INFORMATION: 1996
TITLE: A problem solving approach to challenging behaviors: Strategies for parents and educators of people with developmental disabilities and challenging behaviors
AUTHORS: Janney, R., Black, J., & Ferlo, M.
PUBLICATION INFORMATION: August 1989
This manual is a very useful resource for professionals and parents. Written in a simple style and explained thoroughly with adequate examples, it is easy to comprehend.
TITLE: Alternatives to punishment: Non-aversive strategies for solving behavior problems
AUTHORS LaVigna, G. W., & Donnellan, A. M.
PUBLICATION INFORMATION: 1986
TITLE: Cognitive counseling and persons with special needs: Adaptive approaches to the social context
AUTHOR: Lovett, H.
PUBLICATION INFORMATION: 1985
And finally, make no mistake about it, as Lovett speaks about the right to live in the community, freedom of choice, respect, and dignity he clearly means everyone. His numerous examples from his own experience make it clear that he places no arbitrary limits on who is a member of the human community. His book should lead all of us who work for people with severe disabilities to seriously examine the attitudes we bring to our work.
TITLE: Learning to listen: Positive approaches and people with difficult behavior
AUTHOR: Lovett, H.
PUBLICATION INFORMATION: 1996
This book is filled with strategies and case studies that illustrate alternatives to ineffective and controlling practices so often used with people who have intellectual or emotional disabilities. It is through an interactive "learning to listen" that support providers can develop positive approaches that support people to take greater control of their lives. Chapters cover issues such as the politics of labeling, the politics of behaviorism, and the hierarchy of control. Final chapters of the book discuss some stories of people who hurt themselves and some concluding choices and challenges.
Lovett concludes, "It is in listening to people with difficult behavior that positive approaches contrast most clearly with current traditions of service. In our world of positive approaches, we work in collaboration and in a spirit of openness, honesty, and equality...In some ways, the sharpest contrast can be seen between nonaversive behavioral strategies and positive approaches. Nonaversive strategies are behavioral controls with a pleasant face...Positive approaches are about behavior changes through personal growth and mutual responsiveness...Nonaversive technologies are about control and behavior change; positive approaches are about cooperation and personal growth" (pp. 232-233).
TITLE: Gentle teaching: A non-aversive approach to helping persons with mental retardation
AUTHORS: McGee, J. J., Menolascino, F. J., Hobbs, D. C., & Menousek, P. E.
PUBLICATION INFORMATION: 1987
This book will be most useful to people who are committed to nonaversive interventions and do not need to be convinced that aversive procedures are ineffective and dehumanizing. The authors do not attempt to present the research evidence on the effectiveness of either aversive interventions and punishment, on the one hand, or gentle teaching, on the other. The strengths of this book are that it presents a humanizing posture toward people who have often been abused and dehumanized and that it offers some practical ideas.
TITLE: Against pain as a tool in professional work on people with severe disabilities
AUTHOR: O'Brien, J.
PUBLICATION INFORMATION: 1989
"Those with professional power over people with severe disabilities face an ethical question: is it good to use pain as a tool in their work?" O'Brien tells us that the answer to the questions is "No." His argument is that regardless of whether pain appears to work as a behavior control mechanisms and regardless of the call by both proponents and advocates for more research on the effectiveness of pain as a tool, the fact remains that "pain as a tool increases the power professionals have over vulnerable people while it decreases the changes of positive human relationship." This monograph helps those who are against the use of pain as a tool in professional work on people with disabilities clarify their beliefs and formulate arguments against the use of this "tool."
TITLE: The language of pain: Perspectives on behavior management
AUTHORS: Rioux, M. H., & Yarmol-Franko, K. (Eds.)
PUBLICATION INFORMATION: 1988
The book argues for understanding, human bonding, and interaction as the basis for attempts to change behavior. It points out that methods that have nothing to do with the infliction of pain can be used with success by professionals and families. The book presents a good and impassioned plea for change but is not a "how-to" manual. Instead, it is valuable because it emphasizes the beliefs and postures that must underlie any attempt to interact with another human being.
TITLE: Autism and life in the community: Successful interventions for behavioral challenges
AUTHOR: Smith, M. D.
PUBLICATION INFORMATION: 1990
One area that is often neglected by policy makers, researchers and professionals is the area of adult issues in autism. This book seeks to fill this gap. It provides practical guidelines that meet the "training and management needs" of persons with autism, that can be used in the context of community integrated school and residential settings. The book thus effectively answers questions on the service systems that are provided, behavioral assessment, intervention and modifications that can be implemented and vocational skills that can be taught. An interesting section of the book deals with self management and interpersonal skills which prove to be particularly useful to the adult, especially in the context of community living. A number of examples have been used to effectively illustrate the techniques that have been described.
Though the strategies that have been offered are useful in analyzing and problem-solving of behavioral challenges, this book falls short on one score. By describing a highly structured and manipulable environment and with the increased utilization of "technical" terms to describe and explain behavior, there is a certain human element that is missing in the book. Behavioral challenges also arise through an inability to create and sustain meaningful relationships with others. And this is one aspect that the book does not even touch upon.
TITLE: Supporting people with severe reputations in the community
AUTHORS: Smull, M. W., & Harrison, S. B.
PUBLICATION INFORMATION: 1992
Case studies are used extensively to demonstrate how individuals often considered "not ready" for community living can be supported safely and well. Opportunities for choice and control are emphasized. The authors stress the importance of teaching support personnel how to respond to the wishes and needs of the individual before target behaviors are expressed.
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Centre for Research and Education in Human Services
For U.S. readers, the most interesting parts of this monograph are its analysis of the difference between a health/welfare model and a rights/empowerment model for provision of personal support for people with physical disabilities, and the framework it presents for self-directed attendant services. The approach the monograph espouses is based on a qualitative study of consumers' wishes and desires, and is most applicable for people who do not need support to direct their own attendants. Many of the ideas proposed, however, could be adapted to meet the needs of people who do need such support--for example, a rights/empowerment approach rather than an approach that removes choice and control from the person.
P.O. Box 3036, Station C
Kitchener, ON N2G 4R5
CANADA
In L. Nadel & D. Rosenthal (Eds.), Down syndrome: Living and learning in the community (pp. 256-262). New York: Wiley-Liss, Inc.
This chapter, written by a parent of three daughters, two of whom have disability labels, describes the development of two housing cooperatives and a support organization which works in conjunction with the cooperatives to support members with disabilities. The coops--Courtyard and CHORD--are committed to the creation of welcoming, inclusive, supportive communities composed of people of various ages, income levels, abilities, and cultural origins. The support organization, NABORS, works in conjunction with the coop communities. In addition to describing the philosophy and organizational structure of the coops and NABORS, the author discusses some of the experiences of her daughter, Kerrie, within the coop.
Options in Community Living
This book is a valuable resource for the residential provider concerned with providing supportive living services to people with severe disabilities. It is made up of a series of six papers which describe Options in Community Living, a supported apartment program in Madison, Wisconsin.
22 North Second Street
Madison, WI 53704
Options in Community Living, Inc.
An excellent supplement to the Options manual, this evaluation report focuses on the views of Options staff on a variety of topics, ranging from their descriptions of the people they serve to issues they see as pertinent to future development. The report also includes feedback by the evaluators on issues pertinent to the staff and of concern to most service providers, such as the amount of involvement staff have in people's lives and how to help people develop relationships with community members. Staff concerns regarding the amount of time they had to devote to assist in building relationships along with the inadequacies they felt in being responsible for "getting friends for people" are also presented. The report provides some constructive ways in which staff might enhance the building of relationships, and describes Options' continued commitment in principle and action to supporting people with severe disabilities.
22 North Second Street
Madison, WI 53704World Institute on Disability
This report provides case studies of six state personal assistance service programs funded by the Medicaid personal care option. The programs studied provided a wide variety of services to both people with disabilities and their family members, across the country. Each case study includes an overview of the program, a history of the program, gate keeping and supervision functions, service limits, available support services, a discussion of attendant issues, the context of the program (who is/is not served, who "falls through the cracks"), and views of the individuals interviewed on site.
510 16th Street, Suite 100
Oakland, CA 94612-1502
In J. Nisbet (Ed.), Natural supports in school, at work, and in the
community for people with severe disabilities (pp. 277-339). Baltimore:
Paul H. Brookes Publishing Co.
Through a compilation of personal stories, this chapter describes the provision of community supports for adults with developmental disabilities developed by a residential support program in Greeley, Colorado. The first section outlines Jeanne's story of transition from an institution to her own home. Next, a brief historical background of the evolution of residential services is provided, as well as a discussion of this program's transition from providing residential services to residential supports. The fourth section contains Karren's story as further illustration of various supports. This is followed by a section which proposes a set of values for residential support. The sixth section outlines the process for developing residential supports, using Sharon's story as an example. Finally, the chapter concludes with an examination of what has been learned from this approach to providing supports and implications for future directions.
Baylor College of Medicine
This paper, prepared for the National Council on Disability, provides an excellent review of the developmental disabilities and mental health literature on personal assistance services, including both formal and informal support. The paper concludes that "the principle of individuals determining and maintaining a life style of their choice has emerged as a common thread across recent developments in all disability groups" (p. 8). It points out the challenge of changing the traditional service systems and funding mechanisms to allow this principle to be realized, and asks that policy makers develop policy strategies that will make this possible.
3400 Bissonet, #101
Houston, TX 77005
Responsive Systems Associates
This is a report on one organization that began a process in 1985 of transforming the way that people with developmental disabilities live in Weld County, Colorado. In addition to describing the transformation process, this report highlights leadership, the dimensions of the relationship between staff and each individual they support, moving to a deeper understanding of choice for people with severe disabilities, changes in staff roles, among a myriad of other issues.
58 Willowick Drive
Lithonia, GA 30038
Inclusion Press
This small book tells the story of Judith Snow and her Circle of Friends, the Joshua Committee. This powerful personal account details the combined efforts of Judith and the Joshua Committee as they worked to free her from a hospital ward and pull together community supports. It also describes the ongoing collaboration to support Judith in the community. In doing so, it addresses fundamental issues related to community support, such as funding, personal care attendants, and relationships and social networks.
24 Thome Crescent
Toronto, ON M6H 2S5
CANADA
In J. A. Racino, P. Walker, S. O'Connor, & S. J. Taylor (Eds.), Housing, support, and community: Choices and strategies for adults with disabilities (pp. 281-298). Baltimore: Paul H. Brookes Publishing Co.
This chapter is a case study of Residential, Inc., a small agency in rural Ohio that has reorganized its services from operating group homes to assisting people to live in homes of their own. The study describes some of the dilemmas they faced and strategies they developed in creating housing opportunities, including changing staff roles and developing better problem solving strategies. Their work eventually evolved into the effort to build a strong community and led them to develop the Perry County Housing Association which is also described in the chapter.
Volume 1: Consumer guide
Volume 2: Agency guide
Research and Training Center
These step-by-step instruction manuals are detailed guides for consumers and agencies who are exploring the usage and employment of personal care attendants (PCAs). These manuals begin with a discussion of pre-employment preparation. Practice interviews are encouraged and a thorough analysis of one's needs before beginning the recruitment process is stressed as a necessity. A look at matching applicant characteristics and personal needs and expectations follows. The manuals also contain detailed guides to assist consumers with providing appropriate feedback to their PCAs. Scheduling and emergency back-up networks are included topics.
on Independent Living (RTC/IL)
University of Kansas
Lawrence, KS 66045
World Institute on Disability
The World Institute has been studying Personal Assistance Services (PAS) for the past decade. This document stems from the responses of the representatives from over 40 states and 10 countries who were in attendance at a 1991 World Institute on Disability symposium on PAS. The essays which comprise this manuscript represent a wide range of experience with PAS as it relates to many different types of disabilities and life situations. Responses included reflections on PAS from the following perspectives: personal and political, the family, the benefits of PAS, the effect of PAS on family relationships, PAS for people labeled with mental retardation, what teens think about PAS, gay and lesbians issues, a multicultural perspective, PAS and people with a head injury, PAS and AIDS, and PAS and people who use a respirator.
510 Sixteenth Street, Suite 100
Oakland, CA 94612-1500
World Institute on Disability
This comprehensive loose leaf guidebook provides a wealth of information for a variety of people on personal assistance services. A definition of personal assistance service is provided, as are the current policy issues in the field. There are four major sections, and the book includes details from prior research conducted by the World Institute on Disability, published articles, and suggestions for change. After the introduction, the first section describes the current personal assistance services system, including a description of the type of people who receive these services. The section also includes state and federal funding sources, as well as a copy of an article on the issue of consumer choice. The next section includes drafts of federal legislation on funding and provision of services, as well as an article from an ADAPT newsletter, which advocates for attendant programs. An additional chapter in the book looks at innovative models for providing personal assistant services, and steps to make these services happen. In addition, there is an article on personal assistance in Sweden, where national policies support the needs of all people to live in the community. The book closes with a glossary and publications that advocates may find useful.
510 Sixteenth Street, Suite 100
Oakland, CA 94612-1500
b. Housing
Center for Community Change
The first of these two 100-page manuals offers an overview of housing trust funds describing how they work, what they have done, where they exist, and who to contact for further information. It also includes profiles of housing trusts in 34 states. The second book presents a guide to developing housing trust funds. Here the reader is given an overview, principles for developing housing trust funds, different models of administration, revenue sources and information on program issues (e.g., eligibility). Both books provide a bibliography for further reference.
1000 Wisconsin Avenue, N.W.
Washington, DC 20007
Cooperative Housing Foundation
Cooperative housing is a short book offering the reader basic information on housing cooperatives, including a brief history of their development, information on who might be interested in living in a coop, how a coop is structured and how to get started. The finances of coop establishment are presented including members' costs and issues in start-up. Finally, the book offers a comparison of rental, individual ownership and cooperative living, including such areas as ownership, community control, management, and tax benefits.
1010 Wayne Avenue, Suite 240
Silver Spring, MD 20910
1612 King Street
Alexandria, VA 22314
Housing Technical Assistance Project (HTAP)
This is a case study of the Reservoir Cooperative, Madison Mutual Housing Association in Madison, Wisconsin. In addition to describing the advantages and disadvantages of this model, the paper provides information on different structures for cooperatives and alternative financing sources for cooperatives, including mortgage insurance, national cooperative boards, the Federal National Mortgage Association (FNMA) secondary market for cooperative blanket and share loans, state and local government agencies, tax exempt bonds, home ownership assistance programs, equity financing, low income tax credits, foundation and religious organizations, local initiative support corporation (LISC) and enterprise foundations.
Association for Retarded Citizens
1522 K Street, N.W., Suite 516
Washington, DC 20005
400 Prince George's Boulevard
Upper Marlboro, MD 20772
Community Services Society of New York
"Many people suffer from a lack of decent, affordable, and accessible housing. In some areas, landlords have abandoned or neglected their rental housing...private, for-profit housing is increasingly more expensive than low-income households can afford, and does not meet their need for a safe and well-maintained home. In a number of neighborhoods, low-income residents and other community members have joined together in response to this unmet need."
105 East 22nd Street
New York, NY 10010
Institute for Community Economics
This paper presents an overview not only of what a land trust is but the principles that direct community land trusts. The problem of how we use our land today is defined followed by a CLT approach to dealing with these problems. The article takes the reader through a brief description of how the CLT works and describes advantages of such an approach.
151 Montague City Road
Greenfield, MA 01301
Creative Management Associates
The preparation of this handbook was supported by the Illinois Planning Council on Developmental Disabilities. It is intended as a guide to assist people who are seeking housing options in Illinois. However, the majority of the information provided would be useful to those in other states who are seeking housing. The manual begin with discussion about the importance of "home." The second chapter discusses the importance of relationships, as well as some practical strategies for meeting others and selecting compatible housemates, if that is an interest. Chapter 3 covers the issue of control of housing, such as responsibilities associated with rental versus home ownership, and describes various housing options including trusts, condominiums, and shared housing programs. Chapter 4 provides detailed information on home ownership, including: financing, zoning, interest, and taxes. Charts and text give specific financial information, such as about down payments and monthly mortgage and rental payments, and about determining what you can afford. Detailed information on budgeting for home ownership is given in Chapter 5. Sample budgets are included. Issues such as utilities, leases, repairs, and maintenance are discussed. Chapter 6 is most specific to Illinois, describing sources of housing assistance in the state; however, similar sources exist in other states. The appendix includes copies of forms for budgeting for a rental place, budgeting for a place you own, and a money payment schedule.
P.O. Box 5488
Portsmouth, NH 03802-5488
University of New Hampshire
Based on the experience of supporting people in New Hampshire and other states to own homes, this article provides on overview of some of the "pitfalls and potential solutions" to legal and financial issues. It is divided into two major sections. The first section addresses how to preserve eligibility for and maximize the use of Medicaid benefits. The second section addresses Department of Labor and IRS issues such as how to arrange companion and roommate support.
Institute on Disability
7 Leavitt Lane, Suite 101
Durham, NH 03824Institute on Disability
The Home of Your Own Project in New Hampshire was designed to promote home ownership for people with disabilities. One of the activities of this project was to demonstrate that people with developmental disabilities have the financial capacity to sustain home ownership and how services can be designed to support people in these situations on an ongoing basis. This report provides a profile of 16 people who now own their own homes through working with this project.
University of New Hampshire
7 Leavitt Lane, Suite 101
Durham, NH 03824President's Committee on Mental Retardation
This report to the President's Committee on Mental Retardation lays out 10 broadly recommended goals in housing for persons with mental retardation, and then addresses 5 issues related to policy and programmatic actions that contribute to the Committee's efforts to achieve the goals. These 5 issues include:
Room 5325
300 Independence Avenue, S.W.
Washington, DC 20201
Contact: Gary Blumenthal
Center for Community Change Through
This monograph outlines and identifies effective resources in relation to housing opportunities for people with labels of mental illness. It highlights the economics of housing, offers more specific insight into understanding real estate language, and discusses private investor ownership and financing strategies for consumer and family ownership. An overview of government programs which finance housing on a federal, state and local level is included. Finally, this publication addresses issues of implementation of integrated housing offering a six step process of what should be looked at in such a pursuit. The reader is provided with a list of references and a bibliography. Though the text focuses on the mental health system, it offers a great deal of useful information applicable for people and agencies desiring to understand integrated housing for other individuals.
Housing and Support
Institute for Program Development
Trinity College of Vermont
208 Colchester Avenue
Burlington, VT 05401The New Hampshire Developmental Disabilities Council
This booklet, though written to offer specific advice to New Hampshire residents, is a very good overview of housing options. It includes chapters that explain home ownership, public assistance programs, cooperatives, mortgage programs, and supports. The booklet is written clearly, simply, and includes concrete strategies.
Concord Center
10 Ferry Street, Box 315
Concord, NH 03301
Center for Community Change
This paper is based on a forum which called together a small group of ex-patients of the mental health system to discuss housing and support. The participants agreed that people with psychiatric disabilities want and need typical community housing (e.g., apartments, houses, cooperatives, etc.) with consumer-controlled support. Instead, they are usually forced into group living situations or single room occupancy hotels where they experience lack of privacy, lack of control over their home, transience, stressful interpersonal relations, even danger, and regimentation. The group discusses consumer preferences in housing, attitudinal barriers within the mental health profession, and the types of supports that should be available to enable people to live in the homes of their own choosing. This is an insightful piece that applies to any disability group.
Through Housing and Support
Institute for Program Development
Trinity College of Vermont
208 Colchester Avenue
Burlington, VT 05401
National Association of Housing Cooperatives
This booklet discusses advantages and disadvantages of housing cooperatives, what community sponsors can expect from a cooperative, types of housing cooperatives in the United States, and information on how to start a cooperative. The booklet also discusses mutual housing associations (MHA) which are not used extensively in the United States, but may be in the future.
1614 King Street
Alexandria, VA 22314
4. Supporting People with Challenging Behaviors
Whereas, educational and other habilitative services must employ instructional and management strategies which are consistent with the right of each individual with severe handicaps to an effective treatment which does not compromise the equally important right to freedom from harm. This requires educational and habilitative procedures free from indiscriminate use of drugs, aversive stimuli, environmental deprivation, or exclusion from services; and
These guidelines mean that most of the standard materials on behavioral interventions were excluded from consideration. We feel that the highly vulnerable nature of people who are labeled as having "challenging behaviors" justifies such rigid adherence to these guidelines. We also include a few materials related to people with disabilities who have become involved with the criminal justice system.Champman & Hall
This book examines a comprehensive range of issues related to supporting individuals who challenge families and service providers with their behaviors. It is full of excellent ideas based on cases about everything from the roots of behavior to creating community options. Some of the chapters may be of limited use to American readers as the authors analyze issues based upon British policy and systems.
206 Boundary Row
London SE1 8HN
UNITED KINGDOM
TASH
This monograph presents a thorough and scholarly critique of the use of aversive procedures such as punishment, negative reinforcement, and overcorrection with people with disabilities and especially severe handicaps. The manual includes an evaluation of the effectiveness of aversive procedures, an analysis of aversive procedures as described in published studies, a comparison of procedures used on people with disabilities with those used on other populations, a discussion of public and professional silence on aversives in the area of disabilities, a description of depersonalization, and a summary and recommendations. The manual contains an exhaustive list of references and a series of excellent tables summarizing the research literature on aversive procedures.
29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
Diverse City Press Inc. (La Presse Divers Cite Inc.)
This is the first of a planned 3-book series in understanding people with developmental disabilities and helping them gain greater control over their world, their life, and their behaviour. At the beginning, the authors lays out some critical foundation points: (1) All behaviour communicates and as such behaviourists or those who wish to use behaviourism must see behaviour as a legitimate language that needs decoding; (2) Anyone who attempts to program away a behaviour without understanding its meaning is unethical. We don't need to be right, but we need to have tried to interpret the language. (3) Behaviour programming when successful should leave people in more control of their lives, not just their behaviour. (4) Behaviour programming when unsuccessful should blame the hypothesis not the client or staff. (5) People with disabilities are complex people, just like those without disabilities, and as such will require a broad palate of services from art therapy to play therapy to psychoanalysis. Behaviour therapy is not always the treatment of choice. (6) Medication is not an evil thing. Like behaviour therapy, it should not be used to control people, but to assist them with control. Since some people without disabilities benefit from appropriate medication so will some people with disabilities; (7) A person who uses behaviour approaches will soon see that the behaviour often communicates about an inappropriate environment or inappropriate treatment. As such the therapist will become, very quickly and often very radically, an advocate. (8) There can be no one philosophy that determines how a diversity of people live. Using behaviour technology to eradicate personal difference and personal choice is an Aryan concept that is very scary. The following pages are filled with stories, examples, and strategies for assisting people to gain more control of their behaviour and their lives.
BM 272, 33 des Floralies
Eastman, PQ J0E 1P0
CANADA
SETRC
Why do some children with developmental disabilities behave in ways that are difficult to handle? Are some behavior problems so serious that they legitimate aversive treatment, pain infliction or the causing of emotional distress? If one chooses not to punish, how does one respond to behaviors that are disturbing and dangerous? These are questions that are constantly raised by both parents and educators of children who are developmentally delayed. There are a number of ethical questions and issues of humane treatment that are also closely associated with the above mentioned queries. This manual therefore offers various non-aversive alternatives to address severe behavior problems at home, at school and in the community.
The repertoire of problem solving strategies that are offered in this book can be characterized as gentle, preventative, normal, educational, individualized and ongoing. It involves effective planning through a team approach that avoids placing blame and emphasizes honesty and accountability. The authors offer valuable suggestions on how to define the particular behavior problem, ways of prioritizing aspects of the behavior that need to be changed, methods of gathering information, developing a sound theory and acting on it in non-aversive and humane ways. The manual contains blank problem solving forms that can be used for any behavior intervention.
Syracuse City School District
501 Park Street
Syracuse, NY 13203
Irvington Press
This book provides a comprehensive overview of how to implement a positive approach to behavioral programming in the community. It reviews the standard behavioral practices and delineates how they can be implemented within this positive framework. This book will be particularly valuable to behavioral psychologists working with community programs.
740 Broadway
New York, NY 10003
Praeger Publishers
This book is about seeing the unique value of every individual regardless of the labels society has pasted on them. Indeed, Lovett does write about the counseling--the true professional--relationship in the fullest sense: helping the individual have the greatest possible range of choices in his or her life. The forum for this discussion is provided as Lovett highlights the ways in which behaviorism, a powerful tool for aiding personal growth, has been transformed into a methodology for control. In particular, he shows how an emphasis on clinical research has led to the misuses of many interventions in the lives of people with severe disabilities. His central point is that by attempting to directly translate procedures used in highly controlled institutional settings into the real lives of people, service providers and their behavioral consultants have frequently lost sight of the individual they claim they are helping. Lovett sees the basic principle of behaviorism as remaining valuable, but points out how implementation is radically transformed when the social context of an intervention is taken into consideration.
This book is written in a clear understandable style. Anyone with a minimal understanding of behaviorism should be able to learn from it. However, you will be disappointed if you pick this volume up looking for a how-to-do-it-manual of behavioral strategies. One of its central lessons is that all such "resources" will be most valuable when they find their way to the circular file.
Teachers, residential providers, and consultants will find Lovett rewarding reading. In addition this book may be particularly valuable as a tool for educating local "generic" mental health providers and beginning psychologists about people with severe and profound mental retardation. One of the most telling sections contains the author's reflections on the inadequacy of his own professional preparation for working for people with severe disabilities.
521 Fifth Avenue
New York, NY 10175
Human Sciences Press, Inc.
This book presents "gentle teaching" as a positive and humanizing approach to dealing with people who have challenging behaviors. As described by the authors, gentle teaching rejects punishment and aversive behavioral interventions and stresses the importance of integrating behaviorism with humanism. The book provides a philosophical rationale for gentle teaching, a description of techniques, examples of gentle teaching, and a response to common questions about gentle teaching ("What you can try if...?"). Throughout the book, the authors present concrete suggestions. The book is directed toward caregivers and others who are directly involved in providing services to people who have challenging behavior.
72 Fifth Avenue
New York, NY 10011
The G. Allan Roeher Institute
The language of pain is a collection of essays by professionals, family members and self-advocates who believe it is wrong and ineffective to use painful "therapies" in managing behavior. Especially powerful is the description by a woman of her sister's experiences in traditional behavior management programs. As her sister's behavior became more injurious, more painful techniques were used on her, while the family stood by helplessly, unable to bring her home and unable to stomach the assaults on her dignity and person. Each writer makes a strong plea for a more humane approach to altering or dealing with abusive behavior.
4700 Keele Street, Kinsmen Building
York University
North York, ON M3J 1P3
CANADA
NASDDDS
This monograph may prove useful to anyone planning with, or supporting a person with "behavioral challenges." The handbook focuses on four key issues: labeling, individualized planning, recruitment and development of supports, and ways to identify and avoid problems or abuses.
113 Oronoco Street
Alexandria, VA 22314
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