Nutrition services for children with special needs

Nutrition services for children with special needs

 J AM Diet Assoc 1995;95;809 (The expiration date for this position has been delayed until the publication of a new position, "Nutrition services for individuals with developmental disabilities and special health needs.")     PDF Version

The term "children with special health needs" (CSHN) describes those children who have congenital or acquired conditions that affect physical and/or cognitive growth and development and who require more than the usual pediatric health care. The term refers to children who have developmental disabilities, chronic conditions, or health-related problems as well as those who are at risk for these conditions (1).

CSHN must have the opportunity to achieve their potential in all areas of development. Appropriate nutrition services are a critical aspect of the support required for this to occur. CSHN are vulnerable to all of the factors that place other children at nutritional risk, and to a myriad of additional biological, environmental, and psychosocial variables that may further jeopardize their nutritional status and pose barriers to their development. In highlighting the population of CSHN, The American Dietetic Association (ADA) reaffirms its position that all children should have access to adequate nutrition services (2).

Position Statement

It is the position of The American Dietetic Association that nutrition services are an essential component of comprehensive care for children with special health needs. These nutrition services should be provided within a system of coordinated interdisciplinary services in a manner that is preventive, family centered, community based, and culturally competent.

Environment Dictating Need for Position

Characteristics of the Population

Approximately 10% to 15% of children in the United States have special health needs (3). These numbers include children with a wide variety of conditions, many of which have a prevalence of less than 0.2% (3,4). Technological and other medical advances and a changing social environment are contributing to major changes in this population. Some conditions have decreased in prevalence in recent years whereas others have increased (4). New conditions have also appeared. High-risk infants, children dependent on medical technology, children with rare metabolic or immunologic deficiencies, and older adolescents with chronic conditions are examples of new or expanded segments of this population who present major challenges to the service delivery system (1). Prenatal exposure to alcohol and other drugs has also expanded the population of CSHN, and maltreatment further challenges the development of many children.

Laboratory and clinical investigators are helping to define nutrition problems more clearly and are strengthening the information base for nutrition screening, assessment, and intervention with this population (5-9). As many as 40% of CSHN have been estimated to be at risk for nutrition problems (10-12). Some programs have reported substantially higher percentages; in one state, 92% of children who received nutrition screening in conjunction with an early intervention program met at least one criterion for nutrition referral and 68% met two or more of the criteria (13).

Evidence of the benefits of nutrition intervention to the health and development of CSHN continues to accrue. This evidence is derived from treatment of conditions as diverse as metabolic disorders in which nutrition problems are primary, and conditions in which the nutrition problems or risks result from biological, environmental, or psychosocial stressors. Improved nutrient and energy intakes, resulting in amelioration of growth and other nutrition markers, have been extensively documented (5,6,14,15). Economic benefits are derived from preventive and habilitative nutrition services (16).

Nutrition interventions are often related to feeding, including mechanical and behavioral aspects of the processes by which food is provided and intake occurs. For some children, improved nutrition is the factor most critical for survival; for others it can reduce the potentially debilitating effects of their conditions. Improved nutrition and feeding may increase the level of independence the child is able to achieve, improve the child's perception of self, and improve care providers' perception of their ability to meet the child's needs. By integrating nutrition support services into a coordinated system with other health, education, and social services working in partnership with families, mutual reinforcement and support can be achieved across disciplines, and services to children and their families can be strengthened (11,17,18).

Consumer Trends

New demands are being made to ensure continuous care for CSHN in response to increasingly complicated caregiving situations. Increased use of day care by CSHN means that some children encounter multiple caregivers on a daily basis. Home health care allows many children with complicated health conditions to live at home with their families. Other children live in transient situations where home, family, school, day care, and health care providers change frequently.

Parent-to-parent support groups for CSHN exist in every state. They link families, collect and distribute information and data, forge partnerships with policy makers and professionals, and lead efforts to improve health and education systems.

Rapid changes are occurring in the racial and ethnic makeup of the nation. By the year 2020, one in three Americans will be of African, Asian, Hispanic, or American Indian ancestry (19). Strategies are needed to effectively communicate and work within these communities in order to make nutrition services culturally competent for CSHN from these populations.

Nutrition services are not in place for many CSHN and their families. Many factors affect access, utilization, and quality of health services. For example, specialized services are often more limited in areas of low population density.

Business Environment/Technology

Changes in health care are currently driven by mandates for cost containment. Dramatic increases in the cost of Medicaid have forced states to choose among limiting services, increasing revenue, or achieving cost control through managed care. Gaps in coverage of services for CSHN exist, particularly for families whose incomes, although low, exceed Medicaid limits. Coverage is most limited for community-based services and for nonphysician services such as nutrition (20).

Enhanced communication technology provides the required links among services for CSHN. Integrated health information systems, in place in some states, facilitate quality assurance, cost analysis, and consumer choice (21). Technology provides distance learning methods, including satellite-based training, computer-assisted instruction, and cable television narrowcasting, and opens opportunities for national and regional health training networks (21).

Legislation

In 1987, the US Surgeon General pledged a national commitment to all CSHN and their families through the promotion of family-centered, community-based, coordinated care for CSHN and their families (22). Following this, the Omnibus Budget Reconciliation Act of 1989 (Public Law 101-239) earmarked a minimum of 30% of the block grant funding under Maternal and Child Health Services Programs (Title V of the Social Security Act) for CSHN and their families. The purpose of Title V, to improve the health of all mothers and children, is guided by national health goals and objectives, which are revised each decade. Healthy People 2000 objectives call for statewide networks of comprehensive, community-based, health care systems for CSHN that also ensure family-centered, culturally competent, coordinated services (23). Additional key concepts are defined in the Figure (24). See key concepts and descriptions.

Other legislation affecting the lives of families of CSHN includes the Individuals with Disabilities Education Act, or IDEA (Public Law 102-119), the latest amendments to the education law for children with developmental disabilities (25). As part of this legislation, governor-appointed lead agencies and interagency coordinating councils in each state continue to develop and implement statewide systems to provide early intervention services for eligible infants and toddlers and their families. Family-centered, coordinated care is central in this legislation. Nutritionists are identified as qualified personnel who provide developmental services that include "health services necessary to enable the infant or toddler to benefit from the other early intervention services" (26).

The US Department of Agriculture revised instructions for "Meal Substitutions for Medical or Other Special Dietary Reasons" (Food and Nutrition Services Instruction 783-2, Rev 2, 1994) to clarify the policy for providing meal modifications or food substitutions for Child Nutrition Program participants with special dietary needs. These instructions and other regulations and laws provide equal access to school meals for all schoolchildren, including those with special needs (27).

Rationale

Nutrition-Related Characteristics

The nutritional status of CSHN is influenced by a complex of factors that necessitate interdisciplinary interaction for assessment and intervention (3,5,6). Many conditions alter the expected course of childhood growth and development. Digestion, absorption, metabolism, and excretion may be modified by inherited or acquired disorders, surgery, and medications. Acquisition of the fine and gross motor skills required for self feeding and the oral motor skills necessary for sucking, swallowing, drinking, and eating may be delayed or impaired by structural deformities, neurologic abnormalities, or impaired cognitive abilities.

Behavioral disorders of the child, disruption in the family, inadequate information, or limited financial resources may result in inappropriate food intake or feeding practices. Frequent hospitalizations, parent training, behavioral intervention, customized equipment for positioning and feeding, home parenteral and enteral nutrition, and specialized nutrition products may be required to meet the child's needs.

Because many CSHN are at increased risk for nutrition-related problems, they require early screening and periodic monitoring, and their caregivers need guidance in prevention and treatment of these problems. Children need to be assessed for inappropriate diets; feeding problems; alterations in growth; and risks due to drug-nutrient interaction, metabolic disorders, or caregiver-related problems and/or concerns. Assessment should be followed by appropriate intervention, ongoing follow-up, and coordination of care. Successful models of service use an interdisciplinary team of professionals who can assess strengths and needs of children and their families and provide appropriate, coordinated intervention.

Multiplicity of Service Needs

Meeting the service needs of CSHN and their families often requires input from many agencies and professionals. Service needs vary according to the child's disorder and the severity of the impairment. Strong linkages among tertiary and community-based health, education, and social services are necessary to promote continuity of care that is of the highest quality and delivered in the most cost-effective manner. Commitment is needed to an interdisciplinary approach that best supports and contributes to an integrated system of care that is comprehensive, family centered, community based, and culturally competent. In such a system, families are equal partners with professionals and they collaborate in all aspects of decision making related to services for children (28,29).

Services identified as helpful to families include screening, evaluation, and intervention; genetic counseling; financial counseling; support groups for parents, siblings, and members of the extended family; transportation; legal services; parent training; day care; respite care; home care; and assistance in obtaining equipment (30). Additional services include identification and referral systems and care coordination.

Roles and Responsibilities of Dietetics Practitioner

Personnel Preparation

Incorporation of principles of care for CSHN and interdisciplinary clinical experiences into the curriculums of undergraduate and graduate nutrition programs, supervised practice programs in dietetics, and residency programs in pediatric nutrition (31) will increase the number of nutrition professionals trained in the provision of services to this population.

Specialized training in nutrition services for the target population is provided by a national network of university-affiliated programs, pediatric pulmonary centers, adolescent health training programs, schools of public health, and special projects funded by the federal Maternal and Child Health Bureau. Graduates of these programs provide leadership in the field through consultation, technical assistance, and mentorship to practitioners; tertiary-level care; development of exemplary programs; preservice and in-service training; dissemination of information; and research.

Continuity of Services

Coordination within and between disciplines is required to orchestrate the diverse services from the spectrum of professionals and agencies required to meet the needs of CSHN and their families. Health services must be coordinated with social, educational, and family resources to promote a continuum of care (29). A goal of care coordination is to enable children and their families to function as independently as possible.

Access to Services

Incorporation of CSHN into the mainstream for primary nutrition services, rather than automatic segregation into specialty clinics, results in improved access to services. Interagency collaboration and cooperation between primary-care settings and specialty clinics is required, however, to ensure access to the most appropriate service for each child.

Financing

Public and private payment for nutrition screening, assessment, counseling, and follow-up and for products such as special formulas, food, and feeding equipment is in place in many states but not in others. Constraints on public resources necessitate the exploration of voluntary and private funding to ensure required nutrition services for some families. Current regulations must be critically examined and modified to use resources effectively and efficiently to meet nutrition needs.

Information and Data

Recipients of new funding in health care are those who have convincing documentation that their expenditure of limited money is cost-effective. Further research is necessary to augment knowledge of the needs of children and adolescents at high nutritional risk and to evaluate the effectiveness of nutrition intervention strategies. Documentation of nutrition service needs and outcomes can be facilitated by the use of quality assurance criteria (32,33).

Management, Planning, and Leadership

A systematic approach to the development of nutrition services in each state will require health professionals to assess needs, identify resources, set goals and objectives, build resources, and implement a plan (10). Ongoing evaluation is a critical component of the planning process and the service delivery system. Planning continues in every state for implementation of IDEA. An opportunity exists through this legislation to influence nutrition services for CSHN. However, it is incumbent on dietitians/nutritionists to ensure the inclusion of nutrition services in early intervention initiatives at state and local levels. Support can be provided to interagency coordinating councils by defining standards of nutrition care, identifying personnel who are trained to provide nutrition services, and identifying priorities for resource development to ensure that nutrition service needs can be adequately addressed (10,34). Schools, including day care, preschools, Head Start programs, and public and private schools, also need support from skilled nutrition professionals in addressing the nutrition needs of their students with special health needs (27,35).

An urgent need remains for incentives and safeguards in managed health care plans to ensure effective and efficient organization of services and high-quality care. A matrix for evaluating nutrition services for children and families in state health plans is available from the Maternal and Child Health Interorganizational Nutrition Group (36).

References

1. Ireys HT, Nelson RP. New federal policy for children with special health care needs: implications for pediatricians. Pediatrics. 1992; 90:321-327.
2. Position of The American Dietetic Association: child nutrition services. J Am Diet Assoc. 1993;93:334-336.
3. Baer MT, Farnan S, Mauer AM. Children with special health care needs. In: Sharbaugh CO, ed. Call to Action: Better Nutrition for Mothers, Children, and Families. Washington, DC: National Center for Education in Maternal and Child Health; 1991: 191-208.
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19. Day JC. Population Projections of the United States by Age, Race, and Hispanic Origin: 1993 to 2050. Washington, DC: US Government Printing Office; 1993. US Bureau of the Census, Current Population Reports P25-1104. 20. Newacheck PW, McManus MA. Financing health care for disabled children. Pediatrics. 1988;81:385-394.
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32. Wooldridge NH, Spinozzi N, Isaacs JS, Mellen C, eds. Quality Assurance Criteria for Pediatric Nutrition Conditions: A Model. Chicago, Ill: American Dietetic Association; 1993.
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ADA Position adopted by the House of Delegates on April 23, 1989, and reaffirmed on September 11, 1993. This position is in effect until December 1998. The American Dietetic Association authorizes republication of the position statement/support paper, in its entirety, provided full and proper credit is given. Requests to use portions of the position must be directed to ADA Headquarters at 800/877-1600, ext 4896, or at ppapers@eatright.org.
Recognition is given to the following for their contributions:
Authors:
Betty Whittle Kozlowski, PhD; Judith A. Powell, MPH, RD, CS
Reviewers:
Shirley M. Ekvall, PhD, RD; Janet W. Horsley, MPH, RD; Cristine M. Trahms, MS, RD, FADA; Barbara Dribin Warady, MS, RD

Key concepts for services for children with special health needs. Adapted from: Enhancing Quality: Standards and Indicators of Quality Care for Children with Special Health Care Needs. Boston, Mass: New England SERVE; 1989.

 

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