1. Nutrition for Children with Special Health Care Needs Nutr 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, 2 nd -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