HEAD START®

Caring for Children with
Chronic Conditions

Training Guides for the Head Start Learning Community

Table of Contents | Preface | Introduction | Module 1 | Module 2 | Module 3
| Continuing Professional Development | Resources

Resources

Publications

Beckman, Paula J., and Beckman Boyes, Gayle. Deciphering the System: A Guide for Families of Young Children with Disabilities. Cambridge, MA: Brookline Books, 1993.
      A book written by the mother and aunt of a child with a disability to provide readers with basic information about the early intervention and educational service delivery system.

Bradway, Lauren, and Block, Lawrence A. Children With Special Needs. Durant, OK: Essential Medical Information Systems, Inc., 1990.
      This quick reference book offers concise information about many common diagnoses, as well as brief recommendations for classroom management and sources for more resource information. Some may object to the authors generalizations about cultural and social subgroups

Hobbs, Nicholas, Perrin, James M., and Ireys, Henry T. Chronically Ill Children and Their Families. San Francisco, CA: Jossey-Bass Publishers, 1985.
      This book provides a good overview of the psychosocial and educational needs of children and families living with chronic illness.

Kendrick, A.S., R. Kaufman, and K.P. Messenger, eds. Healthy Young Children: A Manual for Programs. Washington, DC: National Association for the Education of Young Children, 1995.
      A comprehensive resource for designing health policies and practice for child care programs, including Head Start. Contains a section on the care of children with chronic conditions.

Rosenfeld, Lynn Robinson. Your Child and Health Care: A "Dollars & Sense" Guide for Families with Special Needs. Baltimore, MD: Paul H. Brookes Publishing Co., 1994.
      This book is a financial primer for family advocates and parents. It is designed to help with the business aspects of caring for a child with a chronic illness or disability. While specifics about the programs discussed are likely to change over time, for example the book was written prior to the dismantling of AFDC, the basic approach of advocacy and problem-solving will always be valuable.

Urbano, Mary Theresa. Preschool Children with Special Health Care Needs. San Diego, CA: Singular Publishing Group, Inc., 1992.
      A text designed to be a practical guide to professionals working in preschool settings. It addresses the continuum from basic preventive health care practices to management of complex medical conditions. The major focus is on the process of early identification and practical management of special health care needs of preschool age children.

Manuals and Guides

Bailey, William C., and Manzella, Bryn A. Learn Asthma Control in Seven Days. Birmingham, AL: University of Alabama, 1989.
      A patient education curriculum for adults with asthma or adults caring for a child with asthma. The focus is on daily skills for preventing asthma episodes, a discussion of medication options, and simple definitions of what asthma is.

Child Care Law Center. (1994). Caring for Children with HIV or AIDS in Child Care. San Francisco, CA: Child Care Law Center
      This report offers information regarding legal issues faced by child care providers who take care of children with HIV or AIDS.

Child Care Law Center (1994). Legal Aspects of Caring for Sick and Injured Children. San Francisco, CA: Child Care Law Center.
      This report covers the legal aspects involved in taking care of sick or injured children.

Child Care Law Center (1993). Caring for Children with Special Needs: The Americans with Disabilities Act and Child Care. San Francisco, CA: Child Care Law Center
     This report explains the implications of ADA for early child care programs.

Edelman, Larry, ed., Getting on Board: Training Activities to Promote the Practice of Family-Centered Care. Bethesda, MD: Association for the Care of Children's Health, 1995.
      A training curriculum to help staff understand the new roles and skills required to deliver services in a family-centered way.

Garwick, Ann E., and Millar, H.E.C. Promoting Resilience in Youth with Chronic Conditions & Their Families. Washington, DC: U.S. Department of Health and Human Services, Health Resources & Services Administration, Maternal & Child Health Bureau, 1996.
      A good discussion applying the principles of resilience to coping with chronic medical conditions. The focus of the monograph is caring for adolescents with chronic medical conditions, but many of the approaches apply to family with younger children as well.

Jeppson, Elizabeth S., and Thomas, Josie. Essential Allies: Families As Advisors. Bethesda, MD: Institute for Family-Centered Care, 1995.
     A guide written to bridge the gap between service providers' past training and experience and new expectations of collaboration and partnership with families.

Nathanson, Minna Newman. Organizing and Maintaining Support Groups for Parents of Children with Chronic Illness and Handicapping Conditions. Bethesda, MD: Association for the Care of Children's Health, 1986.
      A practical handbook for the formation and maintenance of parent support groups. Includes samples of documents such as workshop announcements, group by-laws, public service announcements etc.

National Asthma Education Program. Asthma Management in Minority Children. Bethesda, MD: National Institutes of Health, National Heart, Lung, and Blood Institute, 1995.
      This publications shares the experience of five projects funded to develop, implement, and evaluate asthma interventions for African American and Hispanic children. The "lessons learned" are presented as practical tips for researchers, health care providers, and community health workers who are working with African American and Hispanic families.

Pathfinder Resources, Inc. Lessons Learned in Developing Systems to Improve Care and Quality of Life for Children with Special Health Needs and Their Families. St. Paul, MN: 1994.
      Lessons learned from projects funded as Special Projects of Regional and National Significance by the Maternal and Child Health Bureau.

Project EXCEPTIONAL. Health and Safety Considerations: Caring for Young Children With Exceptional Health Care Needs. Rohnert Park, CA: Sonoma State University, California Institute on Human Services, 1995.
      A curriculum for child care directors and staff to help them plan for and successfully include children with special medical needs.

Southwest Communication Resources. Fact Packets: Cultural/Ethnic Issues Affecting Health Care from a Family Perspective. Bernalillo, New Mexico. Author, 1996.
      Short summaries of the key cultural issues and recommendations identified by families throughout the United States. The packets focus on Asian, Native American, Indian, Hispanic/Latino, and African American cultures.

Woodruff, Geneva, Hanson, Christopher, McGonigel, Mary and Sterzin, Elaine Durkot. Community Based Services for Children with HIV Infection and Their Families: A Manual for Planners, Service Providers, Families & Advocates. Quincy, MA: South Shore Mental Health Center, 1990.
      A guide for persons planning or conducting community-based programs that enroll children with HIV infection.