Selections from the National Center for Education in Maternal and Child Health Reference Collection
April 1997

This bibliography presents a selective overview of materials on the topic of respite care for parents of children with a disabilities. The items listed may be obtained from the sources cited.

ARCH National Resource Center for Crisis Nurseries and Respite Care Services. National directory of crisis nurseries and respite care federal demonstration projects. Chapel Hill, NC: ARCH National Resource Center for Crisis Nurseries and Respite Care Services, 1996. 390 pp.

Contact: ARCH National Resource Center for Crisis Nurseries and Respite Care Services, Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Telephone: (800) 473-1727 / (919) 490-5577. $25.00 plus $4.50 shipping and handling.

This directory lists projects funded under the Temporary Child Care for Children with Disabilities and Crisis Nurseries Act of 1986. This act provided grants to states to assist private and public agencies in developing temporary care services for children with disabilities, or chronic or terminal illnesses, and for children who have experienced or who are at risk of abuse or neglect. Information is provided on the funded state agency, including grants they made, state interagency efforts, and training; and on service providers, including the program's major goal, program description, program service area, budgets, local interagency collaboration activities, and evaluation.

Bolender, D. (Ed.). Conquering dilemmas and creating options: Equality of access to child care in Iowa for families with children with special needs: A proceedings report. Iowa City, IA: Parent Partnership Program, Iowa Child Health Specialty Clinics, University of Iowa Hospitals and Clinics, 1993. 77 pp.

Contact: Mobile and Regional Child Health Specialty Clinics, University of Iowa Hospitals and Clinics, 100 Hospital School, Iowa City, IA 52242. Telephone: (319) 356-1469 / Fax (319) 356-3715. Price unknown.

This publication reports on two family forums, 'Conquering the day care dilemma for children with special needs' held in October 1991 and 'Respite: Creating child care options in Iowa' held in October 1992. These statewide forums were for families, daycare and respite child care providers, child advocates, resource and referral program staff, child care organizations, AEA and school staff, health care providers, human services staff, state agency staff, and government officials. In addition to summarizing the presentations, this book presents recommendations made by participants during breakout sessions.

Gallagher, J. J. Respite care. Chapel Hill, NC: Early Childhood Research Institute on Service Utilization, 1995. 3 pp. (Raising issues)

Contact: Early Childhood Research Institute on Service Utilization, Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill, 300 NationsBank Plaza, Chapel Hill, NC 27514. Telephone: (919) 962-7369 / Fax (919) 962-7328. Available at no charge.

This short report suggests strategies respite care programs can take to calm unwarranted fears of parents receiving respite care services for their children with special health needs concerning possible mistreatment or abuse of their child by the respite caretaker.

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

Contact: Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill, 500 NationsBank Plaza, Chapel Hill, NC 27514. Price unknown.

This report describes the results of two surveys of respite care and crisis nursery programs across the country. The surveys covered grantees of the U.S. Children's Bureau for the period 1988-1990. The report describes funding, eligibility criteria, services offered, and staffing. The survey instruments are included.

National Information Center for Children and Youth with Disabilities. Respite care. Washington, DC: National Information Center for Children and Youth with Disabilities, 1996. 7 pp. (Briefing paper)

Contact: National Information Center for Children and Youth with Disabilities, P.O. Box 1492, Washington, DC 20013. Telephone: (800) 695-0285 / (202) 884-8200. Price unknown.

This paper discusses the emergence and diversity of respite care services, with emphasis on benefits of respite care for families of children with disabilities or special health needs. Tips and advice for parents who are seeking care are also presented. This paper concludes with a listing of readings and organizations that can provide parents and others with additional information on the subject of respite care. It updates an article from the NICHCY News Digest from 1989 that was available in print and on audiocassette.

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

Contact: Barry R. Sherman, Ph. D., Bureau of Child and Adolescent Health, New York State Department of Health, 208 Corning Tower, Empire State Plaza, Albany, NY 12237-0618. Telephone: (518) 474-6781. $25.00; direct purchase requests to Mr. John Cahill, (518) 474-5370.

This videotape is designed for three purposes: to illustrate the need for home-based respite care for families of chronically ill children; to describe a successful model of home based respite care in New York City which utilizes nurses and paraprofessionals as caregivers; and to demonstrate the benefits accrued to families as well as the cost effectiveness of home-based respite care. The film depicts specific activities associated with the hands-on provision of home-based respite care to three families with chronically ill children. Testimonies of the providers and participating parents are included along with footage of the children. The videotape is directed at providers, families, and advocates. [Funded by the Maternal and Child Health Bureau]

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, 5700 S.W. 34th Street, Suite 323, Gainesville, FL 32608. Telephone: (904) 392-5904 / Fax (904) 392-8822 / Email ICHP@qm.server.ufl.edu. Web site: http://www.ichp.ufl.edu. Price unknown.

This document presents standards for programs in Florida providing respite care to the families of children with complex medical problems (defined as individuals, ages 0 to 21, who have chronic diseases or conditions that generally require continuous 24-hour a day medical, nursing, and health supervision). The authors warn that these standards are not to be applied to programs providing respite care to the families of children with other types of special needs. These standards of care include a definition of terms, guidelines for personnel, facility requirements, criteria for enrollment, referral and enrollment procedures, and guidelines for in service training, quality assurance, and administration.

Salisbury, C., and Intagliata, J. Respite care: Support for persons with developmental disabilities and their families. Baltimore, MD: Paul H. Brookes Publishing Company, 1986. 336 pp.

Contact: Paul H. Brookes Publishing Company, P.O. Box 10624, Baltimore, MD 21285. Telephone: (800) 638-3775 / (410) 337-9580 / Fax (410) 337-8539. $25.00.

This book is for families who require respite care for a member with a disability. It provides many answers to the most important questions about respite care and is divided into three major sections: rationale and need for respite services; issues and models for delivering respite services; and evaluating respite services.