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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.

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 15 teams in Washington. 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)

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. Two-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 (10/2015 Note: some of the links in this flyer are outdated- the flyer is currently being updated)

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
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 Sharon Feucht, MA, RD, CD at the Center on Human Development and Disability, University of Washington (sfeucht@uw.edu ; 206-685-1207).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.

Community Feeding Teams

Children with feeding difficulties are frequent challenges to 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 19 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.

More information on where the feeding teams are located and how to contact them, as well as how to develop a community feeding team.

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.

Website – Nutrition for Children with Special Health Care Needs (CSHCN) in Washington State

The Nutrition for CSHCN in Washington website is a collaboration between the University of Washington- Center on Human Development and Disability (CHDD) and the Healthy Starts and Transitions Unit (which includes CSHCN), 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

Resources

Nutrition and Children with Special Health Care Needs

  • Bright Futures: Nutrition and Pocket Guide 
  • Bright Futures: Nutrition, 3rd Edition focuses on health promotion and disease prevention for infants, children, adolescents, and families. It promotes positive attitudes toward nutrition and offers guidance on choosing healthful foods. Consistent with key Bright Futures principles, family meals are emphasized because they are associated with better diets, build on family strengths, and promote unity, social bonds, and good communication. Developed by a multidisciplinary team of contributors, Bright Futures: Nutrition, 3rd Ed​ition is for a wide array of health professionals, including registered dietitians, nutritionists, nurse practitioners, physicians, dental hygienists, and health educators, as well as university/college students in health-related fields. It can be used in a number of settings, such as community health clinics, school-based health centers, and community programs (eg, Women, Infants and Children, Head Start) and during home visits. Bright Futures: Nutrition, 3rd Edition can be downloaded by section or purchased from shopAAP).​
  • 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. Download or order free CD copies here. 
  • 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 available at the same site.
  • Washington State WIC (Women, Infants and Children) Nutrition Program

Collaboration between Primary Care Providers and Registered Dietitians

  • J Acad Nutr Diet. 2014 Dec;114(12):2017-22. doi: 10.1016/j.jand.2014.08.025. Epub 2014 Nov 24.
    Registered dietitian nutritionists bring value to emerging health care delivery models.
    Jortberg BT, Fleming MO.

    • Abstract: Health care in the United States is the most expensive in the world; however, most citizens do not receive quality care that is comprehensive and coordinated. To address this gap, the Institute for Healthcare Improvement developed the Triple Aim (ie, improving population health, improving the patient experience, and reducing costs), which has been adopted by patient-centered medical homes and accountable care organizations. The patient-centered medical home and other population health models focus on improving the care for all people, particularly those with multiple morbidities. The Joint Principles of the Patient-Centered Medical Home, developed by the major primary care physician organizations in 2007, recognizes the key role of the multidisciplinary team in meeting the challenge of caring for these individuals. Registered dietitian nutritionists (RDNs) bring value to this multidisciplinary team by providing care coordination, evidence-based care, and quality-improvement leadership. RDNs have demonstrated efficacy for improvements in outcomes for patients with a wide variety of medical conditions. Primary care physicians, as well as several patient-centered medical home and population health demonstration projects, have reported the benefits of RDNs as part of the integrated primary care team. One of the most significant barriers to integrating RDNs into primary care has been an insufficient reimbursement model. Newer innovative payment models provide the opportunity to overcome this barrier. In order to achieve this integration, the Academy of Nutrition and Dietetics and RDNs must fully understand and embrace the opportunities and challenges that the new health care delivery and payment models present, and be prepared and empowered to lead the necessary changes. All stakeholders within the health care system need to more fully recognize and embrace the value and multidimensional role of the RDN on the multidisciplinary team. The Academy’s Patient-Centered Medical Home/Accountable Care Organizations Workgroup Report provides a framework for the Academy, its members, and key partners to use to achieve this goal.
  • 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. 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.
  • Primary Care Medical Homes for Children and Youth with Special Needs: Understanding the RD’s Role

Posted 12/20/05, rev. 1/18/06, updated 10/2015