Respite
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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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