Nutrition for Children with Special Health Care Needs Nutr 530

1. Nutrition for Children with Special Health Care NeedsNutr 530 Betty Lucas, MPH, RD, CD 685-1289 blucas@u.washington.edu

2. Who are CSHCN? Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition, and who also require health and related services of a type or amount beyond that required by children generally McPherson M et al. A new definition of children with special health care needs. Pediatrics, 1998.

3. CSHCN includes: • Birth defects • Result of trauma • Cancer • Perinatal drug exposure • Infection sequelae, e.g. CMID, meningitis

4. Who are Children at Increased Risk? • Very low birth weight • Metabolic deficiencies • Some chromosomal abnormalities • Extreme poverty • Absence of social support • Child abuse or neglect • Air pollution, 2nd-hand smoke and infestations that can exacerbate conditions such as asthma

5. “Required Health and Related Services” are: • Specialized medical & nursing services; enhanced preventive and primary services • Therapies such as PT, OT, speech, mental health, home health, nursing services • Family support services, e.g. counseling, case management, care coordination, respite care • Durable medical equipment and assistive devices • Early intervention (birth-3 yrs, special education, transportation, social services

7. Developmental Disability A chronic severe disability of a person 5 yrs and older which: -is attributable to a mental or physical impairment or combination - is manifested before age 22 yrs - is likely to continue indefinitely (Public Law No. 101-496, Developmental Disabilities Assistance and Bill of Rights Act of 1990)

8. DD – cont. Results in substantial functional limitations in 3 or more of these areas of major life activity: -self care - receptive/expressive language - learning - mobility - self-direction - capacity for independent living - economic sufficiency

10. DD - cont • Reflects the person’s need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated • Includes infants and children <9 yrs, even without delays in 3 areas, if they are likely to meet the criteria later in life

12. Prevalence • 17% of children <18 yrs have some type of developmental disability (CDC, 2001) • 79-90% of children under age 3 yrs with developmental delays in early intervention (EI) programs had 1 or more nutrition risk factors (Bayerl et al., 1993) • 3-4 million Americans have DD, and another 3 million have milder forms of cognitive disabilities or mental retardation

13. CSHCN in WA State • 21% with mild condition • 9% with moderate condition • 2% with severe condition • 68% well children 1993 census data, Newacheck

14. Risk Factors; Etiologies • Increased survival of premature and low birthweight infants – with subsequent sequelae, i.e. cerebral palsy, MR, developmental delays, learning/school difficulties • Genetic disorders • Inherited metabolic disorders • Chromosomal abnormalities; specific syndromes

15. Risk Factors; Etiologies • Congenital anomalies; disorders of organ systems (cardiac, renal) • Exposure to alcohol, drugs, and related substances • Poor prenatal care • ?? Unknown etiology

16. Why are these children at higher risk for nutrition concerns? • Altered growth – short stature, growth retardation • Increased or decreased energy needs due to medical condition, limited mobility • Overweight, underweight, FTT • Inadequate nutrient intake due to feeding difficulties, anorexia, increased needs

17. Why are these children at higher risk for nutrition concerns? • Feeding problems – oral motor, self-feeding, behavioral • Medication-nutrient interactions • Special diets, e.g. renal, diabetic, PKU • Disrupted parent-child feeding interactions • Dental issues impacting feeding/diet • Use of alternative and complementary therapies

18. Altered Growth • Variations: • need to determine if normal or unusual pattern of growth • Primary prenatal onset • Secondary prenatal onset • Postnatal onset

19. Primary Prenatal Onset • Genetic: • inborn errors of metabolism • Laurence-Moon-Biedel syndrome • Chromosomal: • Prader-Willi • Trisomies (Down syndrome) • Turner syndrome

20. Primary Prenatal Onset • Syndromes of Unknown Etiology: • Cornelia DeLange syndrome • Williams syndrome • Noonan syndrome • Smith Lemli-Opitz syndrome • Rubinstein-Taybi syndrome

21. Secondary Prenatal Onset • Maternal factors: • smoking, alcohol, drugs (legal and illicit) • infection (congenital rubella, herpes, syphilis) • placental insufficiency • poor maternal nutrition • uncontrolled maternal disorder such as PKU

22. Postnatal Onset • asphyxia (birth trauma, meconium aspiration, etc.) • infection/sepsis • prolonged hypoglycemia or acidosis • IVH • kernicterus • deprivation

23. Services for CSHCN should be: • Comprehensive • Coordinated • Culturally-appropriate • Community-based • Family-centered (a challenge with limited resources and service $$)

24. National Agenda for CSHCN • All children will receive regular ongoing comprehensive care within a “medical home” • All families will have adequate private and/or public insurance to pay for needed services • All children will be screened early and continuously for special health care needs

25. National Agenda for CSHCN • Services for CSHCN and their families will be organized in ways that families can use them easily • Families of CSHCN will participate in decision making at all levels and will be satisfied with the services they receive • All youth with special health care needs will receive the services necessary to make appropriate transitions to all aspects of adult life including adult health care, work & independence