From the Academy
Position Paper
Position of the Academy of Nutrition and Dietetics: Nutrition Services for Individuals with Intellectual and Developmental Disabilities and Special Health Care Needs

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Abstract

It is the position of the Academy of Nutrition and Dietetics that nutrition services provided by registered dietitian nutritionists (RDNs) and nutrition and dietetics technicians, registered (NDTRs), who work under RDN supervision, are essential components of comprehensive care for adults with intellectual and developmental disabilities (IDD) and children and youth with special health care needs (CYSHCN). Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community based, and culturally competent. Individuals with IDD and CYSHCN have many risk factors requiring nutrition interventions, including growth alterations (eg, failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, drug-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Furthermore, these individuals are also more likely to develop comorbid conditions, such as obesity or endocrine disorders that require nutrition interventions. Poor nutrition-related health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Timely and cost-effective nutrition interventions can promote health maintenance and reduce risk and cost of comorbidities and complications. Public policy for individuals with IDD and CYSHCN has evolved, resulting in a transition from institutional facilities and programs to community and independent living. The expansion of public access to technology and health information on the Internet challenges RDNs and NDTRs to provide accurate scientific information to this rapidly growing and evolving population. RDNs and NDTRs with expertise in this area are best prepared to provide appropriate nutrition information to promote wellness and improve quality of life.

Section snippets

Public Policy

In addition to private insurance, there are government programs, policies, and funding (Figure 1) available for individuals with IDD and CYSHCN that may provide coverage for medical nutrition therapy (MNT), enteral formula, or feeding equipment or cover the costs of support through therapy, nursing, or attendant care.

Life Expectancy

Improvements in medical care have led to increased life expectancy, with many CYSHCN and individuals with IDD living well into middle age and beyond. In addition to learning how to care for individuals who may experience early aging and worsening of cognitive and/or physical disabilities, chronic diseases must also be addressed in this population.19

The shift away from institution-based living toward home- and community-based living has changed how individuals access medical care, including MNT

Oral Health Care

Individuals with IDD and CYSHCN have significant oral health care problems, including gingivitis, periodontitis, and caries35; however, complicating factors for treatment include significant difficulties in accessing care due to reimbursement, transportation, behavior issues, and lack of providers with expertise working with individuals with IDD and CYSHCN. Risk factors for poor oral health in this population include dependency on others for oral hygiene; oral aversions; dry mouth or gingival

Nutritional Risk Factors

Altered physical growth rate and body composition are often seen in CYSHCN. The prevalence of obesity in CYSHCN is almost twice that of the general population, because nearly half of adolescents with autism spectrum disorder (ASD) and Down syndrome are overweight, and 25% with ASD and 31% with Down syndrome are obese.23 In most CYSHCN, these rates of obesity are often attributed to poor eating habits and low levels of physical activity. In children with Down syndrome these rates may also be

Weight Status

As adults with IDD have left institutional care to live in group homes or supported living arrangements, they have adopted the physical activity and dietary intake characteristics of the general population, and in turn, have shown increasing rates of overweight and obesity.57 The prevalence of obesity in adults with IDD is approximately twice that in the general population.58 These high rates of obesity combined with lower levels of fitness and poor diet quality result in an increased risk of

Services Received

The Individuals with Disabilities Education Act11 requires that students with IDD be educated to the maximum extent possible with students who do not have IDD (ie, mainstreamed); however, many students remain in special education classrooms and are educated by special education teachers and related personnel. As students transition out of adolescence, the Individuals with Disabilities Education Act requires schools to provide transition services to adulthood to prepare for continuing education

Nutrition Services

RDNs are responsible for the nutrition assessment of individuals with IDD and CYSHCN. Assessment is multifactorial, including a review of medical diagnoses, anthropometrics, nutrition-focused physical exam, biochemistries, clinical data, dietary intake, feeding skills, functional abilities, cognitive skills, environmental factors, social factors, and economic resources. This thorough assessment is used to determine nutrition diagnoses and develop intervention plans. Services may be provided,

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  • Cited by (0)

    This Academy of Nutrition and Dietetics position was adopted by the House of Delegates Leadership Team on May 3, 2003, and reaffirmed on May 9, 2007, and March 23, 2012. This position is in effect until December 31, 2018. Requests to use portions of the position or republish in its entirety must be directed to the Academy at [email protected].

    Reviewers: Sharon Denny, MS, RD (Academy Knowledge Center, Chicago, IL); Pediatric Nutrition dietetic practice group (Mimi Kaufman, MPH, RD, LD, Austin, TX); Behavioral Health Nutrition dietetic practice group (Sharon Lemons, MS, RDN, CSP, LD, FAND, Fresenius Dialysis Centers, Fort Worth, TX); Robin Meyers, MPH, RD, LDN (The Children’s Hospital of Philadelphia, Philadelphia, PA); Patricia Novak, MPH, RD (Professional Child Development Associates, Pasadena, CA); Mary Pat Raimondi, MS, RD (Academy Policy Initiatives & Advocacy, Washington, DC); Alison Steiber, PhD, RD (Academy Research & Strategic Business Development, Chicago, IL); Jodi Wolff, MS, RDN, LD, CNSC (Rainbow Babies and Children’s Hospital, Cleveland, OH).

    Academy Positions Committee Workgroup: Mary Ellen E. Posthauer, RDN, CD, LD, FAND, chair (M.E.P. Healthcare Dietary Services, Inc, Evansville, IN); Aida C. G. Miles, MMSc, RD, LD (University of Minnesota, Minneapolis, MN); Lee Shelly Wallace, MS, RD, LDN, FADA, content advisor (University of Tennessee Healthy Science Center, Memphis, TN).

    The authors thank the reviewers for their many constructive comments and suggestions. The reviewers were not asked to endorse this position or the supporting article.

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