Original ArticlePrevalence of Developmental Disabilities and Receipt of Special Education Services among Children with an Inborn Error of Metabolism
Section snippets
Methods
The study sample included 2 groups of children born during the period 1988 through 2001 with a metabolic disorder that was identified either through newborn screening or clinical symptoms. Eligibility for the newborn screening sample was defined as children identified through the Georgia Newborn Screening Program whose mothers resided in the metropolitan Atlanta area (Clayton, Cobb, DeKalb, Fulton, and Gwinnett counties) at the time of the child's birth and at any point when the child was 3
Results
From 1988 through 2001, 127 diagnosed cases of Georgia newborn screen-eligible metabolic disorders were identified in the 580 192 live births in metropolitan Atlanta (Figure 1). Of the 73 children (57%) who were eligible for MADDSP linkage, 3 were found to have a developmental disability. Two of these 3 children had MSUD; 1 had both CP and an ID, and the other had an ID alone (Table, cases 1 and 2). For special education services, case child 1 was served under an exceptionality of moderate ID,
Discussion
This study considered 2 populations of children with metabolic disorders, those identified by newborn screening and those identified through clinical symptoms. For each population, we examined receipt of special education services with administrative data (SEDMA) and presence of developmental disability with administrative data and active record review (MADDSP). This study included a population of children identified through clinical symptoms and also addressed an earlier limitation of
References (25)
- et al.
Intellectual outcome in children with maple syrup urine disease
J Pediatr
(1991) - et al.
Galactose-1-phosphate uridyl transferase deficiency due to Duarte/galactosemia combined variation: clinical and biochemical studies
J Pediatr
(1978) - et al.
Galactose intolerance in individuals with double heterozygosity for the Duarte variant and galactosemia
J Pediatr
(1982) - et al.
Outcomes analysis of verbal dyspraxia in classic galactosemia
Genet Med
(2000) - et al.
Speech and language deficits in early treated children with galactosemia
J Pediatr
(1983) - et al.
Prospective treatment of urea cycle disorders
J Pediatr
(1991) - et al.
Neurologic outcomes of propionic acidemia
Pediatr Neurol
(1992) - et al.
Neonatal-onset propionic acidemia: neurologic and developmental profiles, and implications for management
J Pediatr
(1995) - et al.
Clinical outcome of long-term management of patients with vitamin B12-unresponsive methylmalonic acidemia
J Pediatr
(1994) Newborn screening: a blueprint for the future
Pediatrics
(2000)
Long-term developmental outcomes of children identified through a newborn screening program with a metabolic or endocrine disorder: a population-based approach
J Pediatr
Prevalence of four developmental disabilities among children aged 8 years—Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000
Morbid Mortal Wkly Rep CDC Surveill Summ
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The authors declare no conflicts of interest. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.