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Nutritionists/Registered Dietitians

Introduction

Medical Homes for Children with Special Health Care Needs

Medical Home Leadership Network

Screening and Referral for Nutrition Concerns

Providing Nutrition Services

Community Feeding Teams

Sample Communication Forms

Web Site - Nutrition for Children with Special Health Care Needs in Washington State

Resources

Introduction

Children with special health care needs are at increased risk for nutrition-related problems. It has been estimated that up to 40% of children with special health care needs have nutrition risk factors that could be helped by referral to a registered dietitian (RD). Some of the common nutrition problems include:

• Delayed growth, underweight and overweight
• Feeding delays, oral-motor problems, or altered feeding interactions
• Inadequate or excessive diet quantity or quality
• Medication/nutrient interactions
• Elimination problems, i.e. constipation, diarrhea
• Altered energy and nutrients needs, i.e. inborn errors of metabolism
• Dental caries including early childhood caries (ECC) that may be related to inappropriate breastfeeding or bottle-feeding
• Poor or excessive appetite
• Poor parent-child feeding relationship
• Limited access to nutritious, healthy food
  

Medical Homes for Children with Special Health Care Needs

Children with special health care needs are best served within a medical home.

A medical home is not a building, but rather a team approach to providing comprehensive primary health care services in a high-quality and cost-effective manner.

In a medical home the child or youth, his or her family, primary care physician, and other health professionals develop a trusting partnership based on mutual responsibility and respect for each other's expertise.  Partners share complete information with each other.

Together, families, health care professionals and community service providers (including nutritionists and RDs) identify and access all medical and non-medical services needed to help the child and family.

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Medical Home Leadership Network

In Washington State, the Medical Home Leadership Network (MHLN) is a network of volunteer parent-professional community medical home teams. These MHLN teams do not provide direct care to children, but they work to identify unmet medical home needs in their county, and carry out activities to address these needs. Each team usually includes a minimum of a pediatrician or family physician, a parent of a child with special needs, a public health nurse (usually the Children with Special Health Care Needs Coordinator), and an early intervention family resources coordinator.

There are currently 21 teams with over 95 members, covering 25 of the state’s 39 counties and the majority of the state’s population. To see where the MHLN teams are located, see Teams by County.

Many primary care providers may not be aware of the nutrition providers in their area from different settings, e.g. WIC, hospital, community clinics, early intervention, health department, schools, home health care agency. RDs can improve communication and collaboration with MHLN teams and other primary care providers by sharing screening and referral tools, clarifying their nutrition role and eligibility of children served within their settings, and providing a system of follow-up communication after accepting a nutrition referral. (See Sample Communication Forms below)

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Screening and Referral for Nutrition Concerns

Since children with special health care needs are at increased risk for nutrition-related problems, it is important that they receive screening to identify any problems. A 2-page flyer, Getting Connected: Prevention and Primary Care for Young Children with Special Health Care Needs, outlining nutrition risks, screening procedures, and nutrition referral locations in Washington State, is available at:

http://depts.washington.edu/cshcnnut/download/nutserv/gettingconnected.pdf

Examples of several screening tools that can be used in primary care settings or early intervention programs are available at: http://depts.washington.edu/cshcnnut/nutserv/index.html

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Providing Nutrition Services

When a nutrition concern is identified, primary health care providers or educators should refer the child and family for nutrition services. Registered dietitians (RDs) who work with children with special health care needs often have additional training in the area of pediatrics and special health care needs.

CSHCN Nutrition Network

http://depts.washington.edu/cshcnnut/nutnet/index.html

In Washington State the CSHCN Nutrition Network is a group of RDs who provide nutrition services for children with special health care needs. They receive training at the Center on Human Development and Disability, University of Washington and participate in two annual continuing education events. This on-going training is supported by the Children with Special Health Care Needs Program, WA Department of Health. Currently about 90 RDs in Washington belong to the CSHCN Nutrition Network, and work in a variety of employment settings, including local health departments, community clinics, hospitals, early intervention centers and home health agencies. For more information on this specialized training, contact Betty Lucas, MPH, RD, CD, CHDD, University of Washington (blucas@u.washington.edu; 206-685-1289).

Many Washington state-funded programs require that the RD also be a certified dietitian (CD). Reimbursement for nutrition services in Medicaid or EPSDT requires the CD certification.

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Community Feeding Teams

Children with feeding difficulties are frequent challenges to MHLN teams and primary care providers. Due to the complex nature of these feeding problems (poor growth, medical conditions, inadequate dietary intake, oral motor delays, etc), a team approach is most effective in helping the child and family.

Washington State Community Feeding Teams provide an interdisciplinary approach to address feeding/nutrition concerns for children in a comprehensive, cost-effective manner. The teams include a minimum of a feeding therapist (occupational therapist or speech therapist), a nutritionist, and a specialist in behavior/family interaction (nurse, social worker, behavior therapist). Feeding teams work directly with families to help parents/caregivers resolve important issues related to feeding and nutrition. The team approach can benefit a family by avoiding duplication of services and allow all the nutrition and feeding to be addressed by one team. In most cases, these community feeding teams also provide intervention and follow-up.

The approximately 15 feeding teams in Washington have been formed as either interagency or intra-agency teams. Agencies that have been involved include local health departments, developmental centers, school and education service districts, hospitals and others, depending on the community resources.

Feeding teams locations and contact persons: http://depts.washington.edu/cshcnnut/feeding/index.html

To obtain more information on developing a community feeding team, see Guidelines for the Development and Training of Community-based Feeding Teams in Washington State (available as a pdf at www.doh.wa.gov/cfh/mch/documents/FTGuidelinesFinal.pdf )

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Sample Communication Forms

Physicians and other primary health care providers appreciate brief updates about shared clients.  Medical home providers needs to know about health-related services their patients are receiving in order to provide comprehensive primary care, advise the family, assure care coordination, and serve as the central repository for all medical and health related records for their patients.

Nutritionists/Registered Dietitians frequently communicate with doctors and other health care providers about shared clients.  They may do this by phone, fax or email depending on the situation and provider preference.   The following are sample forms used by Nutritionists/Registered Dietitians to communicate with and build partnerships with doctors and other health care providers with whom they share clients.

Report to Provider

Spokane County CSHCN Program - Nutrition Summary

Interactive form that includes date and type of contact with child, assessment information (height, weight, weight for height, head circumference, weight for length, weight history), concerns/comments and recommendations/plan

Other Sample Forms

Nutritionists/Dietitians may also be interested in viewing and adapting sample communication forms developed by public health nurse Children with Special Health Care Needs Coordinators to communicate with physicians and other health care providers about shared clients and increase awareness of what their programs do.

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Web Site - Nutrition for Children with Special Health Care Needs in Washington State

This website is a collaboration between the University of Washington- Center on Human Development and Disability (CHDD) and the CSHCN Program, Department of Health. In addition to information about the CSHCN Nutrition Network and Community Feeding Teams, there is also useful information on:

• How to obtain medical nutrition therapy (MNT) from a RD, including reimbursable services
• Current information and links regarding Medicaid-covered nutrition formulas and supplements, the WIC program, and related programs
• Lists of nutrition and feeding publications and resources
• Related Web sites
  

http://depts.washington.edu/cshcnnut/

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Resources

Bright Futures: Nutrition

This nutrition guide provides developmentally appropriate nutrition supervision guidelines for children from birth to adolescence, describes the role of health professionals in delivering nutrition services within the community and encourages partnerships among families and health professionals.

www.brightfutures.org/nutrition/

ADA Position Paper: Providing nutrition services for infants, children, and adults with developmental disabilities and special health care needs.

J Am Diet Assoc, 104:97-107, 2004. www.eatright.org/cps/rde/xchg/ada/hs.xsl/advocacy_1737_ENU_HTML.htm

Nutrition Interventions for Children with Special Health Care Needs

http://depts.washington.edu/cshcnnut/resources/cshcn.html#nut_interv

New - Updated Edition of Nutrition Intervention for Children with Special Health Care Need, 3rd ed, April 2010. Yang Y, Lucas B, Feucht S, editors.  Washington State Department of Health, Olympia WA. 425 pages including glossary and index; 23 chapters; 21 appendices.

This book addresses the growth, nutrition, and feeding of children with or at increased risk for a broad range of chronic illnesses or conditions who require intervention beyond basic, routine, pediatric care. The new edition of the booklet, published by the Washington State Department of Health, is divided into three sections and includes new chapters on breastfeeding, physical activity, and autism spectrum disorders. Each chapter contains intervention strategies, outcomes, and references. Additional tools are included in the appendix.  

• Section 1 outlines procedures for nutrition screening and assessment and development of a nutrition intervention care plan.
• Section 2 addresses nutrition-related problems across a wide range of diagnoses.
• Section 3 examines nutrition management related to specific diseases and disorders that have strong nutrition components.

Registered Dietitians who are members of the CSHCN Nutrition Network and each WA Community Feeding Team have received copies.

The book can be downloaded and free CD copies ordered at this DOH website:

http://here.doh.wa.gov/materials/nutrition-interventions 

Children with Special Health Care Needs: Nutrition Care Handbook

Lucas B, editor; Feucht S and Grieger L, co-editors. American Dietetic Association. 2004. This handbook is designed to be a practical resource for RDs who may see a small number of children with special health care needs in their practice settings. The target audience also includes other health professionals serving children with special needs such as pediatricians, pediatric nurse practitioners, public health nurses, school nurses, and others. The chapters cover growth, diet and nutrition, feeding and eating, non-oral enteral feeding, fluid and bowel problems, and community services and programs. Case examples and clinical tips illustrate techniques and strategies for working with families and children. The cost of the handbook is $30 for ADA members and $39 for non-members. It can be ordered from the ADA Product Catalog.

www.eatright.org/catalog/

Nutrition For Children With Special Health Care Needs - A Self Study Curriculum

From the Pacific West MCH Distance Learning Network.  Designed for RDs and other health care professionals who see children with special health care needs as part of their clinical practices.  Consists of six modules; each module is approved for 1 CEU from the ADA/CDR. Also available on CD-ROM with 98-page reference and resource manual. A Nutrition and Oral Health - Self Study Curriculum is also availble at the same site www.pacificwestmch.org 

Washington State WIC (Women, Infants and Children) Nutrition Program

www.doh.wa.gov/cfh/WIC/

Washington State Medical Home Nutrition Resources Page

www.medicalhome.org/resources/nutrition.cfm

Strengthening the Community System of Care for Children and Youth with Special Health Care Needs and Their Families:  Collaboration Between Health Care and Community Service Systems

by Suzanne Bronheim, Phd.D. Georgetown University Center for Child and Human Development & Thomas Tonniges, MD, American Academy of Pediatrics. Summer 2004.  27 pages.
http://gucchd.georgetown.edu/72800.html

Focus:  Medical homes and organizing services for children and youth with special needs and their families so families can access them easily.

Excellent, practical resource with suggestions for how health care system representatives and representatives from the broader system of community services can:

• become more aware of each other,
• learn about the specifics of the other system
• and communicate successfully to improve services for children and youth. 

Additional resources are given for the more complex steps of improving collaboration and developing shared leadership.

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Posted 12/20/05, rev. 1/18/06

Primary Author: Betty Lucas, MPH, RD, CD; Nutritionist, Center on Human Development and Disability, University of Washington

Additional contributor: Kate Orville, MPH, Co-Director, Medical Home Leadership Network