Residential Care and Community Integration
for the Developmentally Disabled:

Respite Care

Updated 11/29/02

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IV. Respite Care

Abelson, A. Geoffrey, “Economic consequences and lack of respite care,” Psychological Reports, December 1999. 

Abelson, A. Geoffrey, “Respite Care Needs of Parents of Children with Developmental Disabilities,” Focus on autism and other developmental disabilities, v 14 n 2, 1999.

Agosta, J.M. and Bradley, V.J. Editors, Family care for persons with developmental disabilities: A growing commitment, Human Services Research Institute, Boston, MA 1985.

Andress, J. J., Jolliffe, N., McNees, M., Meier, H., & Warner, D.,  Manual of the parent respite care cooperative,  Association for Retarded Citizens, Kalamazoo, Michigan, 1977.  

Apolloni, Anthony H.; Triest, George, Respite Services in California: Status and Recommendations for Improvement, Mental Retardation; v21 n6 p240-43 Dec 1983.

Arc Fact Sheet, Respite Care, Debby Ingram, Research Associate, Family Support Project, http://www.thearc.org/faqs/respite.html

The ARCH National Directory. ARCH National Resource Center, Coordinating Office, Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514; revised annually. The National Respite Locator is located at http://www.respitelocator.org/index.htm

ARCH National Resource Center, Coordinating Office, Starting a Respite Care Program, Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514, 1993.

ARCH,  Bringing Respite to Your Community: A Start-Up Manual, ARCH National Resource Center for Respite and Crisis Care Services, Chapel Hill Training Outreach Project, North Carolina, 1996.

ARCH National Resource Center, Respite Care for Children with Developmental and/or Physical Disabilities: a Parent's Perspective is one of many ARCH fact sheets on respite care and family support available at http://www.archrespite.org/NRfactsheets.htm

Axtell, S.A.M., Garwick, A.W., Patterson, J., Bennett, F.C., and Blum, R.W., Unmet Service Needs of Families of Young Children with Chronic Illnesses and Disabilities. Journal of Family and Economic Issues, 16(4), 395-411, 1995.

Beckman-Bell, P., Child-related stress in families of handicapped children, Topics in Early Childhood Special Education, 1(3), 45-53, 1981.

Borfitz-Mescon, J., "Parent written care plans: Instructions for the respite setting." Exceptional Parent, V (No.), 20-25, April 1998.

Botuck, Shelly; Winsberg, Bertrand G, “Effects of respite on mothers of school-age and adult children with severe disabilities,” Mental Retardation, February 1991.

Burden, Robert, “Psycho-social transitions in the lives of parents of children with handicapping conditions,” Counselling Psychology Quarterly, 1991.

Bradley, K., Editor, "Issues in Respite Care," Kaleidoscope A spectrum of articles focusing on families, 1(2)6, 1988.

Brantley, D., Edwards, B., Hampton, J., Jennings, G. , Respite Care Services for Families Who Adopt Children with Special Needs. Birmingham, AL: Chauncey Sparks Center for Developmental and Learning Disorders, Alabama University, 1994.

Bruininks, Robert H., Ed.; Krantz, Gordon C., Ed, Family Care of Developmentally Disabled Members: Conference Proceedings, Proceedings of the Conference Sponsored by the Information and Technical Assistance Project in Deinstitutionalization, Department of Psychoeducational Studies (University of Minnesota, June 19-20, 1978).

Calhoun, M. L. & Duncan, T. M., The helping hand of respite care . . A training manual for providers of respite care, Respite Care Project, Columbia, South Carolina, 1982.

California Institute on Human Services,  Respite services for Californians with special developmental needs, Sonoma State University, Rohnert Park, 1982.

Caradoc-Davies, T. H.; Harvey, J. M., “Do ‘social relief’ admissions have any effect on patients or their care-givers?” Disability & Rehabilitation: An International Multidisciplinary Journal, July 1995.

Carney, I., Getzel, E.E., & Uhl, M., Developing respite care services in your community: A planning guide. Richmond, VA: The Respite Resource Project, Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, PO Box 843020, Richmond, VA 23284-3020. Telephone: (804) 828-8587, 1992.

Carron, Cary, Respite Care: "How-To" Manual, State of Colorado, 1979

Cerebral Palsy Association, A New Way of Thinking: Respitality. Washington, DC: United Cerebral Palsy Association, 1991.

Chan J.B.; Sigafoos J., “Does Respite Care Reduce Parental Stress in Families with Developmentally Disabled Children?” Child and Youth Care Forum, October 2001, vol. 30, no. 5.

Cobb, Polyxanne, et al., "Give Me a Break": A Parent/Professional Success Story. Respite Care in the 80's, paper presented at the Annual Convention of the Council for Exceptional Children (62nd, Washington, DC, April 23-27, 1984).

Cocks, Alison, “Respite Care for Disabled Children: micro and macro reflections,” Disability & society, v 15 n 3, May, 2000.

Cohen, Shirley, Demonstrating Model Continua of Respite Care and Parent Training Services for Families of Persons with Developmental Disabilities, Final Report, City University of New York and the United Cerebral Palsy Associations, Inc., 1980.

Cohen, S., & Warren, R.D.,  Respite: Principles, Programs and Policies. Austin, TX: Pro-Ed, Inc. (Available from Pro-Ed, Inc., 8700 Shoal Creek Blvd., Austin, TX 78758), 1985.

Cohen, S., "Supporting families through respite care," Rehabilitation Literature,  43(12), 7-11, 1982.

Cotterill, L. et al., "Reviewing respite services: some lessons from the literature," Disability and Society, 12, 5, 1997.

Cotterill, Lesley, Hayes, Lesley, Flynn, Margaret, “Give Us a Break,” Community care, n 1060, March 23, 1995.

Culpepper, Maribeth, et al., Developing a Respite Program in a Rural Community, Las Cumbres Learning Services, Inc., Espanola, NM, 1991.

Deiner, Penny L.; Whitehead, Linda C., “Levels of respite care as a family support system,” Topics in Early Childhood Special Education, Summer 1988.

Dell Orto, Arthur E, “Respite care: A vehicle for hope, the buffer against desperation,” in Family interventions throughout chronic illness and disability, Paul Power, Editor, Springer Publishing Company, 1988.  

Dossetor, D.R., Nicol, A.R., Stretch, D.D., “Hostel-based respite care for adolescents with developmental retardation: the need for ‘normalized’ respite resources,” Journal of child psychology and psychiatry and allied disciplines, v 34 n 3, March, 1993.

Early Head Start Resource Center, Selections from the National Center for Education in Maternal and Child Health Reference Collection, April 1997.

Edgar, Eugene B.; Reid, Penny C.; Pious, Constance C., “Special sitters: Youth as respite care providers, Mental Retardation, February 1988.

Factor, David C., et al., "Stress, Social Support, and Respite Care Use in Families with Autistic Children," Brief Report, Journal of Autism and Developmental Disorders; v20 n1, Mar 1990.

Gallagher, J. J. Respite care, Chapel Hill, NC: Early Childhood Research Institute on Service Utilization, 3 pp. (Raising issues), Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill, 1995.

Factor, David C., Perry, Adrienne, Freeman, Nancy, “Stress, Social Support, and Respite Care Use in Families with Autistic Children,” Journal of autism and developmental disorders, v 20 n 1, March 1990.

Fink, Dale Borman, "My Life Was Turned Upside Down...", Child Care and Employment among Mothers of Young Children with Disabilities, Working Paper Series, No. 232, Wellesley College, Center for Research on Women, Wellesley, MA 1991.

Folden, Susan L., Coffman, Sherrilyn, “Respite care for families of children with disabilities,” Journal of pediatric health care, v 7 n 3, May 1993.

Gafford, Ludmilla Suntzeff, “Respite care,” in Handicapped children and youth:  A comprehensive community and clinical approach, Helen Wallace, Editor, Human Sciences Press, 1987.  

Gaventa, William C, Cooperative Approaches to Respite Planning and Development, Paper presented at the Annual Conference of the American Association on Mental Retardation, Atlanta, GA, May 27-31, 1990.

Green, Geoff, “Home From Home”, Community Care, n 1194, October 16, 1997.

Greidinger, Marc; Parry, John; Moore, David; Barron, Jennifer; and others, “Key legal issues in funding and administering family support services for persons with disabilities,” Mental & Physical Disability Law Reporter, March-April 1994.

Hill, J.W. & Ledman, S.M, Integrated after-school day care: A solution for respite care needs in your community. Richmond, VA, The Respite Resource Project, Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, PO Box 843020, Richmond, VA 23284-3020. Telephone: (804) 828-8587, 1990.

Hoare, P.; Harris, M.; Jackson, P.; Kerley, S., “A community survey of children with severe intellectual disability and their families: Psychological adjustment, carer distress and the effect of respite care,” Journal of Intellectual Disability Research, June 1998.

Human Services Research Institute, Becoming Informed Consumers: A National Survey of Parents' Experiences with Respite Services, Cambridge, MA 1989.

Huntington, G. S., Garner-McGraw J., and Langmeyer, D., Results of descriptive study of crisis nursery and respite care programs,  Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill,  34 pp, 1992.

Institute on Community Integration, "Behavioral Outcomes of Deinstitutionalization for People with Intellectual Disabilities: A Review of Studies Conducted between 1980 and 1999," Policy Research Brief, v10 n1, University of Minnesota, Minneapolis, Oct, 1999

Iscoe, Louise K, Choices Limited, Child Care for Children with Special Needs, Commission on the Mental Health of Children and Their Families Hogg Foundation for Mental Health The University of Texas Austin, Texas 78713, 1989.

Janicki, Matthew P. and Edward F. Ansello, Edward F., Community supports for aging adults with lifelong disabilities, Baltimore, MD: Paul H. Brookes Pub. Co., 2000.

Jawed, Syed H.; Krishnan, V. H.; Oliver, B. E., “Respite care for children with mental handicap: Service evaluation and profile of children,” British Journal of Mental Subnormality, January 1992.

Joyce, K. et al., "Impact of respite care on parents' perception of quality of life," Mental Retardation, 21(4), 1983.

Karp, N., & Ellis, G.J. (Eds.), Time out for families: Epilepsy and respite care," Landover, MD: Epilepsy Foundation of America. (Available from the Epilepsy Foundation of America. To order this publication please call: 1-800-213-5821), 1992.

Karp, Naomi, et al., Respite Care: A Guide for Parents, CSR, Incorporated and Association for the Care of Children's Health, Washington, D.C.  (undated).

Kennedy, M.,  Giving families a break: Strategies for respite care, University of Nebraska Medical Center, Omaha, 1982.

Kenney, M. Giving families a break: Strategies for respite care, Meyer Children's Rehabilitation Institute, University of Nebraska Medical Center, Omaha, 1982.

Kersten P.; McLellan L.; George S.; Mullee M.A.; Smith J.A.E., “Needs of carers of severely disabled people: are they identified and met adequately?” Health & Social Care in the Community, July 2001, vol. 9, no. 4.

Kniest, B.A., & Garland, C.W., PARTners: A manual for family centered respite care. Lightfoot, VA: Child Development Resources; Richmond, VA: Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, Respite Resource Project, Lightfoot, VA, 1991.

Kromer, Megan E, “The impact of respite care on stress in mothers of children with handicapping conditions,” (dissertation), Dissertation Abstracts International, October 1992.

Lashua, Brett, Widmer, Mark and Munson, Wayne, “Some Well-Deserved ‘R & R’ (respite and recreation services for handicapped children and their families),” Parks & Recreation,  May 01 2000.

Libb, J. Wesley; Edwards, Gary, Respite Care Which Meets Community Needs, Paper presented at the Annual Meeting of the American Association on Mental Deficiency 107th, Dallas, TX, May 29-June 2, 1983.

Loop, B. & Hitzing, W.,  Family resource service and support systems for families with handicapped children, Meyer Children's Rehabilitation Institute, Omaha, 1980.

Lukenbill, Ron; Et al., Respite Care Training Manual, Montana, 1977, available from Educational Resources Information Center (ERIC).

Massachusetts Department of Social Services, Respite care program for the developmentally disabled: An overview, Boston, June 1982.

Massachusetts Department of Social Services, Standards for the provision of respite care services,  Boston, June 1983.

Mausner, Sarah, “Families Helping Families: An Innovative Approach to the Provision of Respite Care for Families of Children with Complex Medical Needs,” Social Work in Health Care, 21(1), 95-106, 1995.

Minkes, John; Robinson, Carol; Weston, Clive, “Consulting the children: Interviews with children using residential respite care services,” Disability & Society, 1994.

Minnesota State Planning Agency, Respite Care: A Supportive and Preventive Service for Families. Issues Related to Welsch v. Levine, Policy Analysis Series No. 20, St. Paul, 1963.

Moore, C., A coalition approach to respite care, Montgomery County Association for Retarded Citizens, Silver Spring, MD, 1977.

Moore, C. & Seashore, C. N., Why do families need respite care? Building a Support system, Montgomery County Association for Retarded Citizens, Silver Spring, MD, 1977.

National HomeCaring Council, A better answer . . . Homemaker-home health aide services for the person with developmental disabilities and family series: No.1, A community guide; 2, A manual for instructors; No. 3, A handbook for aides; No.4, Guidelines, New York, 1983.

National Information Center for Children and Youth with Disabilities, Respite care, Washington, DC: National Information Center for Children and Youth with Disabilities,  7 pp. (Briefing paper), P.O. Box 1492, Washington, DC 20013, telephone: (800) 695-0285 / (202) 884-8200, June, 1996.

Neef, Nancy A.; Parrish, J. Macon, “Training respite care providers: A model for curriculum design, evaluation, and dissemination,” in Support for caregiving families: Enabling positive adaptation to disability, George Singer and Larry Irvin, Editors, Paul H. Brookes Pub. Co, Baltimore, 1989.

Nelson, N., Fine, D., Respite Care for Special Needs Adoptive Families, Seattle, WA: Northwest Resource Association, 1994.

New York State Department of Health, Time out for families: Pediatric respite care, Albany, NY: New York State Department of Health,  1 videotape (20 minutes, 1/2 inch), 1991.

Paige, M.,  Respite care for the retarded: An interval of relief for families, U.S. Department of Health, Education and Welfare, Washington, D.C., 1971.

Parham, J. D.; Et al., In-Home Respite Care Program Development, Background, Coordinator's Manual, Training Manual, Research and Training Center in Mental Retardation, Lubbock, TX, 1982.

Perske, M. & Perske, R.,  Hope for the families: New directions for parents of persons with retardation or other disabilities, Abingdon, Nashville, 1981.

Powell, T. Hennessy, Respite Care for the Handicapped: Helping Individuals and Their Families, Thomas, Springfield, IL 1981.

Reid, Penny; Legaz, Mary A, “Special sitters: Teenage respite care providers,” Topics in Early Childhood Special Education, Summer 1998.

Reiss, J., Nackashi, J., and Siderits, P. Standards for pediatric medical respite care in Florida, Gainesville, FL: Institute for Child Health Policy, 1990. 23 pp. Contact: John G. Reiss, Ph.D., Institute for Child Health Policy.

Rimmerman, A., “Provision of Respite Care for Children With Development Disabilities: changes in Maternal Coping an Stress Over Time,” Mental retardation, v 27 n 2, April 1989. 

Rimmerman, A., Kramer, R., Levy, J.M., “Who benefits most from respite care?” International journal of rehabilitation research, v 12 n 1, 1989.

Robinson, Carol E., “Key issues for social workers placing children for family based respite care,” British Journal of Social Work, June 1987.

Ross, E. Clarke, "Financing Respite Care Services: An Initial Exploration," Word from Washington Analysis; v9 n1, Feb 1980.

Salisbury, C.L., & Intagliata, J.,  Respite Care: Support for Persons with Developmental Disabilities and their Families. Baltimore, MD: Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, MD, 1986.

Salisbury, C. & Griggs, P. A.,  "Developing respite care services for families of handicapped persons," The Journal of the Association for the Severely Handicapped, 8, 50-57, Spring 1983.

Salisbury, Christine L. “Characteristics of users and nonusers of respite care,”  Mental Retardation, October 1990.

Shettle, K.R.L., GaulinKremer, E., Witzel, C., Keating, D.L., and Klaber, M.M., “Staff Development in a Community-Based Respite Program,” Child Welfare, 61(3), 161-170, 1982.

Shoob, Deanne, A community respite care program for mentally retarded and/or physically handicapped,  Child Care Assistance Program for Special Children, Inc., Springfield, VA, November 1976.

Singer, George H.; Irvin, Larry K.; Irvine, Blair; Hawkins, Nancy; and others, “Evaluation of community-based support services for families of persons with developmental disabilities,” Journal of the Association for Persons with Severe Handicaps, Winter 1989.

Terres, Nancy Mclaughlin, “The use of respite care services by parents of children with chronic illness and disability,” (dissertation),   Dissertation Abstracts International: Section B: The Sciences & Engineering, October 1999.

Tompkins-McGill, Patricia, Developing Respite Services for Families of Developmentally Disabled Individuals in Rural Areas: A How To Manual, Los Alamos, NM: Las Cumbres Learning Services, Inc, 1991.

Treneman, Madelon; Corkery, Ann; Dowdney, Linda; Hammond, Josephine, “Respite-care needs-met and unmet: Assessment of needs for children with disability,” Developmental Medicine & Child Neurology, August 1997.

Turnbull, Ann P.; Turnbull, H. Rutherford III, “Group action planning as a strategy for providing comprehensive family support,” in Lynn Koegel, Robert Koegel, and Glen Dunlap, Editors,  Positive behavioral support:  Including people with difficult behavior in the community,  Brookes Publishing Co., Baltimore, 1996.

United Community Planning Corporation, Basic principles of respite care for developmentally disabled persons, Boston, 1982.

United Community Planning Corporation, Providing respite care: A training program for respite care providers and home health aids, Boston, 1982.

Upshur, C. C., "Respite care for mentally retarded and other disabled populations: Program models and family needs," Mental Retardation, February 1982.

Upshur, C. C. & Schmickel, A. F., Basic principles of respite care for developmentally disabled persons, Respite Care Interagency Policy Committee, Boston, 1982.

Upshur, Carole C., “Developing Respite Care: A Support Service for Families with Disabled Members.” Family Relations, 32(1), 13-20, 1983.

Upshur, Carole C, Respite Care: A Survey of State Regulations and Family Options, Massachusetts Developmental Disabilities Council, 1979.

Valdivieso, Carol, et al., NICHY News Digest, Respite Care: A Gift of Time, Number 12, Interstate Research Associates, Washington, D.C., 1989.  Also available at http://www.nichcy.org/pubs/newsdig/nd12xt.htm

Valentine, Deborah P., and Andreas, Theresa , An Expanded View of Respite Care: Supporting Families, The Journal of Primary Prevention, 5(1), 27-35, 1984.

Van Dyken, Bill, and Mika, Teri, ”Respite Care and the Religious Community,” The Exceptional Parent, 25(7), 41-43, 1995.

Warren, R.D. and Dickman, I.R.,  For this respite, much thanks . . concepts, guidelines and issues in the development of community respite care services, United Cerebral Palsy Association, New York, 1981.

Wherry, J.N., Shema, S.J., Baltz, T., and Kelleher, K., "Factors Associated with Respite Care Use by Families with a Child with Disabilities,” Journal of Child and Family Studies, 4(4), 419-428, 1995.

Wikler, L. Chronic stresses of families of mentally retarded children, Family Relations, 30, 281-288, April 1981.

Wikler, L. & Hanusa, D,  Impact of respite care on stress in families of developmentally disabled people, paper presented at the American Association of Mental Deficiency Annual Conference, San Francisco, May 13, 1980.

Yoakum, Kathryn S., and Barbara J. Friesen (editors), Respite Care: A Key Ingredient of Family Support, Research and Training Center on Family Support and Children's Mental Health, Regional Research Institute for Human Services, Graduate School of Social Work, Portland State University, Portland, OR, 1991.

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