This annotated bibliography is taken from the following information package:
SELECTED ISSUES IN FAMILY SUPPORT: A COMPILATION OF MATERIALS AND RESOURCES
by Pam Walker
To obtain the complete information package, contact:
Center on Human Policy
Syracuse University
805 South Crouse Avenue
Syracuse, NY 13244-2280
REFERENCES AND ANNOTATED BIBLIOGRAPHY
Baxter, C., Poonia, K., Ward, L., & Nadirshaw, Z. (1990). Double discrimination: Issues and services for people with learning difficulties from black and ethnic minority communities. London: King’s Fund Centre.
This handbook is a response to the concern about the lack of information on good services for people with learning difficulties from black and ethnic minority communities. Chapter 1 looks at key issues and concepts in the development of services for people with learning difficulties and assesses their relevance to a multiracial society. Chapters 2-6 examine services for people with learning difficulties and their families at different stages in their life cycle. Chapter 7 discusses the position of black and ethnic minority service providers and the professional aspects of staffing and employment. Finally, Chapter 8 provides suggestions for future efforts toward creating antiracist services.
Biklen, D. (1991). In support of families. 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 the families who receive supports. It discusses both the positive aspects of the 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.
Center on Human Policy. (1992, Spring). Disability and family policy. Policy Bulletin No. 2. Syracuse, NY: Center on Human Policy.
Taking a multicultural perspective, this policy bulletin discusses family support issues related to gender, culture, and social class. It concludes with recommendations for state- and agency-level policy makers, as well as references and a selected bibliography.
Covert, S. B., MacIntosh, J. D., & Shumway, D. L. (1994). Closing the Laconia State School and Training Center: A case study in systems change. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 197-211). Baltimore: Paul H. Brookes Publishing Co.
This chapter describes the process of closure of the Laconia State School and Training Center and the concomitant development of the community service system. It begins with a review of the background and outcome of the Garrity v. Gallen case and resulting court order. The next section is titled, “Implementing the Court Order: Building a Community-Based System of Services.” It highlights key issues such as: developing the Area Agency system; the evolving role of families; special education services; the role of the Institute on Disability at The University of New Hampshire; and funding issues. The chapters concludes with thoughts about future issues and challenges to be dealt with in the community.
Farber, A., & Marcel, K. (1994). Parent power: Change through grassroots networking. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 373-386). Baltimore: Paul H. Brookes Publishing Co.
This chapter describes the process of parent organizing in Louisiana that led to significant change in the statewide system of supports. Sections include: “Developing a Vision,” “Translating the Vision into Legislation,” “Training Parents to Influence Public Policy,” and “Lessons Learned.” Some of the lessons learned relate to “What Families Need to be Empowered,” “Advantages of a System Designed by Parents,” “Look for and Learn From Allies,” and “Systems Change is a Long Process,” among others.
Gartner, A., Lipsky, D. K., & Turnbull, A. P. (1991). Supporting families with a child with a disability: An international outlook. Baltimore: Paul H. Brookes Publishing Co.
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.
Hemp, R., Braddock, D., Lakin, K.C., & Smith, G. (1994). Trends and milestones: The growth of family support. Mental Retardation, 32(4), 319.
The authors summarize state-by-state expenditures for family support (cash subsidies, respite care, and other family support) for 1992. While total family support spending of $279 million was double that of 1986, it still represented only 1.6% of the total MR/DD resource allocation of $17.1 billion.
Kalyanpur, M., & Rao, S. S. (1991). Empowering low-income Black families of handicapped children. American Journal of Orthopsychiatry, 61(4), 523-532.
This article is based on a qualitative research study of four Black, low-income and single mothers and their perceptions of and interactions with professionals who enter their lives and the lives of their children. It discusses aspects related to exclusionary relationships versus more collaborative relationships. Further, the article discusses the implications for professionals who work with minority families.
Knoll, J. A., Covert, S., Osuch, R., O’Connor, S., Agosta, J., & Blaney, B. (1990). Family support services in the United States: An end of decade status report. Cambridge, MA: Human Services Research Institute.
The 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 support which are family centered, culturally sensitive, community centered, and well coordinated. The second section contains a description of family support activities in each state.
Lynch, E. W., & Hanson, M. J. (1992). Developing cross-cultural competence: A guide for working with young children and their families. Baltimore: Paul H. Brookes Publishing Co.
This book first discusses issues of ethnic, cultural, and language diversity, providing insight into concepts of cultural identity and cultural considerations for interventionists which include self- awareness, awareness and understanding, as well as developing communication. All of these areas contribute to working toward what they call a culturally competent system. The book then looks at families from a variety of cultural backgrounds including African, Asian, Native, European, Latino, Native Hawaiian, Middle Eastern, and Filipino.
Michigan Department of Mental Health in cooperation with Spaulding for Children. (n.d.). Permanency planning practice for children with developmental disabilities within the Michigan mental health system: A manual for trainers. Chelsea, MI: Author.
The purpose of this manual is to provide a training base for use with mental health staff and professionals in other systems working toward enhancing personal relationships for children with developmental disabilities through permanency planning. The 10 units in this manual cover a range of topics, including: preparing to train; gaining administrative and managerial support; permanency planning–what?, why? how?; preservation and reunification practice; adoption; and lifespan advocacy.
O’Connor, S. (1993). “I’m not Indian anymore”: The challenge of providing culturally sensitive services to American Indians. 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. 313-331). Baltimore: Paul H. Brookes Publishing Co.
This chapter describes services provided to the Lakota at the Pine Ridge Reservation in South Dakota through Southern Hills Developmental Services. Issues of culture and service provision are discussed, including ways of providing services on the reservation so people are not forced to move away to find the services they need. Traditionally, the service system has disregarded people’s cultural identity. As an alternative, this chapter highlights the ways in which Southern Hills Developmental Services attempts to respect and support people’s culture.
O’Connor, S. (1993). Multiculturalism and disability: A collection of resources. Syracuse, NY: Center on Human Policy.
Part I of this resource packet is an attempt to place disability within the larger context of multiculturalism. By placing disability within this context, the article explores issues of discrimination that have faced many people because of race, gender, ethnicity, class, age, and disability, to name a few, and the similarities that exist with such experiences. Part II offers annotations of books, articles, materials, and organizations that are dealing with issues of multiculturalism and disability as well as some that deal more specifically with issues such as poverty or ethnicity.
O’Connor, S. (1995). “We’re all one family”: The positive construction of people with disabilities by family members. In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life. Baltimore: Paul H. Brookes Publishing Co.
This chapter contrasts the traditional view of families of children with disabilities as going through a process of grieving with a newly emerging view, that of accepting relationships. These are relationships where individuals are not viewed and judged in terms of their differences, but rather seen as members of their families and accepted as other children in the family are accepted. This chapter offers an example of one family who views their child, who has been labeled autistic, according to the same values, norms, and rules that they use with their other children.
O’Connor, S. (1995). More than what they bargained for: The meaning of support to families. In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life. Baltimore: Paul H. Brookes Publishing Co.
This chapter attempts to understand what happens to families when they seek support services. It focuses on four families from different racial, ethnic, and socioeconomic backgrounds and contrasts what they felt they needed with what they got. Specifically, the chapter looks at what happens to each family when their private worlds are brought into the public realm of the human service system and raises questions related to the personal cost of supports to families involved in this system.
Petr., C. G., Zollars-White, J., Garlow, J., Turnbull, H. R., III, & Roessler, J. A. (1990). Annotated bibliography: Permanency planning (P.L. 96-272). Lawrence, KS: Beach Center on Families and Disability, Department of Special Education and Bureau of Child Research.
There 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.
Rider, M. E., & Mason, J. L. (1990). Issues in culturally competent service delivery: An annotated bibliography. Portland, OR: Research and Training Center on Family Support and Children’s Mental Health, Portland State University.
This annotated bibliography was developed as part of the Minority Cultural Initiative Project to help explore the issue of culturally competent service delivery to children and youth with emotional disabilities and their families. The review was limited to contemporary perspectives spanning the last three decades and covering communities or groups of color within the United States. It is an attempt to present theoretical perspectives regarding culturaly appropriate service delivery and to show practical applications of theory and research. The document is divided into five sections–one that addresses multicultural issues and four that address culturally specific issues.
Shoultz, B. (1993). “Like an angel that came to help us”: The origins and workings of New Hampshire’s family support network. Syracuse, NY: Center on Human Policy.
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, interviews with key players, and participant observation.
Shoultz, B., O’Connor, S., Hulgin, K., & Newman, P. (1994). Permanency planning in Michigan: From philosophy to reality. Syracuse, NY: Center on Human Policy.
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.
Taylor, S. J. (1995). “Children’s Division: Family life and parenting in a family with mental retardation and disabilities. In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life. Baltimore: Paul H. Brookes Publishing Co.
This chapter describes life in a family with disabilities. It discusses parenting issues related to parents with disabilities, and concludes with some lessons for human service providers, including: how best to provide support, what kinds of support may be useful, and thoughts on when to step in and intervene on behalf of children.
Taylor, S. J., Lakin, K. C., & Hill, B. K. (1989). Permanency planning for children and youth: Out-of-home placement decisions. Exceptional Children, 55(6), 541-549.
This article advocates the extension of “permanency planning” in out-of-home placements to include those children and youth with developmental disabilities. It discusses permanency planning and notes its promise in improving the opportunities of all children and youth to grow up in a stable family environment. There is a need for major initiatives in this area: 78% of children and youth with developmental disabilities who are placed in long-term care have no such protections. Though some states currently operate programs according to the principles of permanency planning, significant changes in existing federal policy are recommended to require permanency planning in federally supported out-of-home care for all children, including those with severe disabilities.
Taylor, S. J., Racino, J. A., Walker, P., Lutfiyya, Z. M., & Shoultz, B. (1992). Permanency planning for children with developmental disabilities in Pennsylvania: The lessons of Project STAR. Syracuse, NY: Center on Human Policy.
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 addresses policy issues that have an impact on Project STAR’s mission and contains policy recommendations based on this review.
Traustadottir, R. (1990). Women with disabilities: Issues, resources, connections. Syracuse, NY: Center on Human Policy.
This is a compilation of materials related to women who have disabilities. Part I contains an article which provides an overview of the literature and some of the major issues facing women with disabilities in today’s society. Part II is an annotated listing of resources written by and/or about women and girls with disabilities. Part III provides information about teaching materials about women and girls with disabilities. This part also lists resources for setting up accessible meetings and workshops, and organizations that offer consultation and training on issues related to women with disabilities. Part IV provides information about where to find services and support groups for women and girls with disabilities and how to start networking projects. This part also contains information about women’s periodicals and organizations which include women with disabilities.
Traustadottir, R. (1991). The meaning of care in the lives of mothers of children with disabilities. In S. J. Taylor, R. Bogdan, & J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 185-194). Baltimore: Paul H. Brookes Publishing Co.
This chapter explores the gender differences in caring for a child with a disability within the family. It examines the activities and meanings that are entailed in caring and how caring for a child with a disability influences the life of the primary caregiver. Based on qualitative research methods, the study reveals caring as a complex phenomenon that has at least three meanings: (1) “caring for,” which refers to the caregiving work; (2) “caring about,” referring to the love; and (3) “the extended caring role,” which refers to mothers of children with disabilities who extend their caring to a broader societal concern. The findings suggest that families of children with disabilities tend to follow the most traditional pattern of family life with the responsibilities of caring for a child with a disability continuing to fall heavily on mothers.
Traustadottir, R. (1995). A mother’s work is never done: Constructing a “normal” family. In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life. Baltimore: Paul H. Brookes Publishing Co.
This is a study of how parents of children with disabilities try to construct a “normal family.” The objective is to explain what these families view as a “normal family life” and how they attempt to realize it. The meaning of the concept “normal” does therefore not refer to what is most typical or statistically most common, but the families’ ideal of a “normal family.” The analysis is based on a qualitative study of 26 mothers and 5 fathers of children with disabilities. Themes include: gender issues and family life; disability service issues; family images; and class, race, and family life.
Traustadottir, R., Lutfiyya, Z., & Shoultz, B. (1994). Community living: A multicultural perspective. In M. F. Hayden & B. H. Abery (Eds.), Challenges for a service system in transition: Ensuring quality community experiences for persons with developmental disabilities (pp. 405-426). Baltimore: Paul H. Brookes Publishing Co.
This chapter explores multiculturalism as it applies to the field of developmental disabilities. The first section introduces the concept of multiculturalism. Subsequent sections examine how gender, class, and race influence people with disabilities and the services they receive. These dimensions form a starting point for unraveling and mapping out the complex issues that influence service delivery to persons with disabilities, as well as for directing policymakers and service providers in a direction that does not require individuals to conform to the customs and assumptions of the dominant culture.
Wesely, D. (1994). Bridging change through legislation. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 455-463). Baltimore: Paul H. Brookes Publishing Co.
This chapter describes Nebraska’s role in reforming services to persons with mental retardation, how Nebraska developed community- based services beginning in the 1960s, and how in 1991 landmark legislation was enacted to take Nebraska into the next phase of services for people with developmental disabilities.