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Nutrition for Children with Special Health Care Needs Nutr 530. Betty Lucas, MPH, RD, CD 685-1289 Who are CSHCN?.

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Nutrition for children with special health care needs nutr 530

Nutrition for Children with Special Health Care NeedsNutr 530

Betty Lucas, MPH, RD, CD


Who are cshcn

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.

Cshcn includes

CSHCN includes:

  • Birth defects

  • Result of trauma

  • Cancer

  • Perinatal drug exposure

  • Infection sequelae, e.g. CMID, meningitis

Who are children at increased risk

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

Required health and related services are

“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

Developmental disability

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)

Dd cont

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

Dd cont1

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



  • 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

Cshcn in wa state

CSHCN in WA State

  • 21% with mild condition

  • 9% with moderate condition

  • 2% with severe condition

  • 68% well children

    1993 census data, Newacheck

Risk factors etiologies

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

Risk factors etiologies1

Risk Factors; Etiologies

  • Congenital anomalies; disorders of organ systems (cardiac, renal)

  • Exposure to alcohol, drugs, and related substances

  • Poor prenatal care

  • ?? Unknown etiology

Why are these children at higher risk for nutrition concerns

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

Why are these children at higher risk for nutrition concerns1

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

Altered growth

Altered Growth

  • Variations:

    • need to determine if normal or unusual pattern of growth

  • Primary prenatal onset

  • Secondary prenatal onset

  • Postnatal onset

Primary prenatal onset

Primary Prenatal Onset

  • Genetic:

    • inborn errors of metabolism

    • Laurence-Moon-Biedel syndrome

  • Chromosomal:

    • Prader-Willi

    • Trisomies (Down syndrome)

    • Turner syndrome

Primary prenatal onset1

Primary Prenatal Onset

  • Syndromes of Unknown Etiology:

    • Cornelia DeLange syndrome

    • Williams syndrome

    • Noonan syndrome

    • Smith Lemli-Opitz syndrome

    • Rubinstein-Taybi syndrome

Secondary prenatal onset

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

Postnatal onset

Postnatal Onset

  • asphyxia (birth trauma, meconium aspiration, etc.)

  • infection/sepsis

  • prolonged hypoglycemia or acidosis

  • IVH

  • kernicterus

  • deprivation

Services for cshcn should be

Services for CSHCN should be:

  • Comprehensive

  • Coordinated

  • Culturally-appropriate

  • Community-based

  • Family-centered

    (a challenge with limited resources and service $$)

National agenda for cshcn

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

National agenda for cshcn1

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

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