Special Health Care Needs and Specific Conditions
Information related to special health care needs and specific conditions is included in this section. These resources are intended primarily for use by health care professionals, but families may find some of the resources useful.
Nutrition-specific resources
Condition-specific resources
Related to, but not exclusively nutrition
Self-study Curriculum - Nutrition for Children with Special Health Care Needs. (2008) Pacific West Distance Learning Network. This continuing education activity is designed for RDs and other health care professionals who see children with special health care needs as part of their clinical practices. The curriculum consists of six modules; each module is approved for 1 CEU from the ADA/CDR. It can be accessed free-of-charge; continuing education credits $10 per CEU.
http://depts.washington.edu/pwdlearn/web
NUTRITION FOCUS for Children with Special Health Care Needs. Newsletter published six times annually. Each newsletter focuses on a specific topic and includes practical strategies and resources for health care professionals. Back issues are available. $36 per year (United States), $45 per year (International - US Funds).
Sharon Feucht, editor
University of Washington
Center on Human Development and Disability
Box 357920
Seattle WA 98195-7920
(206) 685-1297
http://depts.washington.edu/chdd/ucedd/ctu_5/nutritionnews_5.html
Nutrition Interventions for Children with Special Health Care Needs. (2001) Washington State Department of Health. This 372-page revision of the 1989 Nutrition Guidelines for Children with Disabilities and Chronic Illnesses includes 3 sections: Determination of Nutrition Status, Problem-Based Nutrition Interventions, Condition-Specific Nutrition Interventions, and a glossary and index. $15, includes shipping and handling. DOH publication number 961-158.
Washington State Department of Health
Revenue Section
PO Box 1099
Olympia, WA 98507-1099
Ordering information at: http://depts.washington.edu/cshcnnut/resources/cshcn.html#nut_interv
Also online as a pdf: http://www.doh.wa.gov/cfh/mch/documents/nutrition_interventions.pdf
Children with Special Health Care Needs: Nutrition Care Handbook. (2005) Lucas B, ed., Pediatric Nutrition Practice Group and Dietitians in Developmental and Psychiatric Disorders Practice Group of the American Dietetic Association. A 180-page, reference for health care professionals monitoring the nutrition care of children with special health care needs. $30.50, plus shipping (ADA Members), $40.00, plus shipping (non-members)
American Dietetic Association
http://eatright.org/cps/rde/xchg/ada/hs.xsl/shop_1292_ENU_HTML.htm
Nutrition for Children with Special Health Care Needs in Washington State. This a collaboration between the Children with Special Health Care Needs Program in the Department of Health, and the Center on Human Development and Disability at the University of Washington. The website includes information to support nutrition services for children with special health care needs and their families in Washington State. Others outside the state may also find information about available services, resources, publications and links to related websites helpful.
http://depts.washington.edu/cshcnnut/
Nutrition Strategies for Children with Special Health Care Needs. (1999) UAP Center for Child Development and Developmental Disabilities, Children's Hospital Los Angeles. This manual was designed to assist programs serving children with special health care needs to include nutrition as one of the provided services. The manual includes nutrition screening forms in English and Spanish, food guidelines for children ages birth to 18 years, eleven sections on a number of nutrition concerns, discussion of nutrition issues associated with 3 specific conditions. $40 plus $5 for shipping (with binder) or $30 plus $5 shipping (without binder). It is also available online, as a pdf.
http://uscucedd.org/NutritionStrategiesforChildren/tabid/654/Default.aspx
Feeding and Nutrition for the Child with Special Needs. (1994) Klein MD and Delaney T. Therapy Skill Builders. A 601-page manual of 195 reproducible handouts on nutrition and feeding issues. Topics include nutrition guidelines, breast and bottle feeding, introducing food from a spoon, independent feeding, oral-motor treatment strategies, tube feeding, and family mealtime. $109, plus shipping and handling.
http://psychcorp.pearsonassessments.com/haiweb/cultures/en-us/productdetail.htm?pid=076-1643-32X
Project SPOON: Special Program of Oral Nutrition for Children with Special Needs. (1991) Tluczek A and Sondel S. Report of a three-year pilot project using a multidisciplinary model to serve parents of infants and children with chronic medical conditions.
Available through HRSA Information Center: http://ask.hrsa.gov/detail.cfm?PubID=MCHE016
Handbook for Children with Special Food and Nutrition Needs. (2006) National Food Service Management Institute. Cloud HH, Bomba A, Carithers T, Tidwell D. The purpose of this resource is to identify developmental disabilities and other health care needs that are frequently seen among children served by food service and provide information related to the type of intervention indicated. Regulations related to school food service are reviewed, and resources are included. It is available online as a pdf: http://www.olemiss.edu/depts/nfsmi/Information/sp_needs_handbk.pdf, from the National Food Service Management Institute: http://www.olemiss.edu/depts/nfsmi/Information/resourceguide.htm.
Nutrition Screening for Infants and Young Children with Special Health Care Needs: Spokane County, Washington, Gilliam, J and Laney S. Children with Special Health Care Needs Program - Washington State Department of Health. (2008). This report describes the nutrition problems of young children entering early intervention programs in Spokane County, and documents the need for regular nutrition screening of children with special health care needs, both by medical home providers and early intervention programs. The reports also demonstrates the need for referral networks of registered dietitians for helping children and families get the nutrition services they require. Information provided in this report can be used by policy makers, Interagency Coordinating Council members, early intervention program directors, and health care providers to advocate for including nutrition as a reimbursable service in government and private health plans as well as federal early intervention legislation. (13 pages)
Available online as a pdf: http://ww.doh.wa.gov/cfh/mch/documents/SpokaneScreen.pdf
Guidelines for the Development and Training of Community-Based Feeding Teams in Washington State. (1994) Guidelines for coordinating activities among community-based nutrition services in Washington State serving children with special health care needs. An overview of the team approach is provided with the steps involved in establishing and training community feeding teams.
Cost Considerations: The Benefits of Nutrition Services for a Case Series of Children with Special Health Care Needs in Washington State. (1998) The report is based on a case series of 30 children and demonstrates that an investment in professional time with multiple family/child contacts can achieve improvements in nutrition and feeding problems and result in savings in overall health care expenditures.
Available online as a pdf: http://www.doh.wa.gov/cfh/mch/documents/CostConsiderations.pdf
Medicaid Reimbursement for Medical Nutrition Products and Nutrition Services for Children with Special Health Care Needs: A Washington State Case Studies Report. (2004) Lucas B, Feucht S and Nardella M (eds). Children with Special Health Care Needs Program - Washington State Department of Health.This 53-page report features 17 case studies of children in Washington State who used medical nutrition products. The report provides cost summaries for Medicaid reimbursement of the nutrition products and medical nutrition services provided by a registered dietitian. Positive nutrition outcomes from this report included improved oral feeding, decreased failure to thrive and reflux, decreased constipation and diarrhea, and improved weight gain and growth. The reimbursement systems for medical nutrition products and medical nutrition therapy for these children with special health care needs resulted in fewer complications and improved health status.
Available online as a pdf: http://www.doh.wa.gov/cfh/mch/documents/Nutr_case_studies_web.pdf
Gaining and Growing: Assuring Nutritional Care of Preterm Infants. This website targets health care professionals who work with preterm and low birthweight infants. It addresses topics such as assessment of nutrition status, nutrient needs, problems with feeding, and parent and family perspectives.
http://staff.washington.edu/growing/
Nutritional Care of High Risk Newborns, Revised Third Edition. (2000) Groh-Wargo et al. Precept Press. "The Red Book" addresses feeding methodology, nutritional assessment, drug-nutrient interactions, and parenteral nutrition for high-risk newborns.
The Down Syndrome Nutrition Handbook--A Guide to Promoting Healthy Lifestyles. (2002). Joan G. Medlin, RD. A 430-page handbook for families, educators and health professional; throughout the lifestages. Out of print, but may be available through online book sellers.
Failure to Thrive and Pediatric Undernutrition: A transdisciplinary approach. (1999). Kessler DB and Dawson P. Brookes Publishing. This book explores failure-to-thrive and pediatric undernutrition from a multidisclipinary perspective. $62.95, plus shipping.
Brookes Publishing, Customer Service Dept.
PO Box 10624
Baltimore, MD 21285-0624
(800) 638-3775
http://www.brookespublishing.com
The Food Allergy Network. Alerting public awareness to food allergies. Resources available through the web site include a newsletter, books and booklets, and educational materials. This site is intended primarily for individuals with food allergies and their families, but includes resources that are useful for professionals as well.
(800) 929-4040
email: fan@worldweb.net
http://www.foodallergy.org/
Related to, but not exclusively nutrition
Smith's Recognizable Patterns of Human Malformation, Jones K, 5th ed. WB Saunders (1997) Provides concise, complete information on the history, etiology, and pathogenesis of a large number of dysmorphologies. 875 pages. $65, available at medical bookstores.
Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities, MJ Guralnick MJ, ed. Brookes Publishing Co, 2000. Includes focus on interdisciplinary process, specific discipline assessments (including nutrition assessment), and interdisciplinary assessment case studies of children with a variety of diagnoses. $44.95
http://www.brookespublishing.com/store/books/guralnick-4501/index.htm
Family Village: A Global Community of Disability Related Resources. This website is aimed at persons with disabilities, their families, and service and support providers. Resources include information about specific diagnoses, adaptive technology and products, recreation, and educational opportunities.
http://www.familyvillage.wisc.edu