Original Article
Prevalence of Developmental Disabilities and Receipt of Special Education Services among Children with an Inborn Error of Metabolism

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Objective

To examine the presence of developmental disabilities and receipt of special education services in children with an inborn error of metabolism.

Study design

The study population was children born from 1988 through 2001 in whom a metabolic disorder was diagnosed after identification by newborn screening (n = 97) or after clinical identification (n = 34). These children were linked to the Metropolitan Atlanta Development Disability Surveillance Program (MADDSP) and Special Education Database of Metropolitan Atlanta (SEDMA) to determine developmental outcomes at 8 years of age and 3 through 10 years of age, respectively. Medical and educational records were examined to consider factors contributing to developmental outcomes.

Results

Of 97 children with a metabolic disorder identified with newborn screening, 12 (12.4%) were identified by SEDMA as receiving special education services and 2 (2.7%) were identified by MADDSP as having a developmental disability. Of the 34 children with a clinically identified metabolic disorder, 8 (23.5%) were identified with SEDMA, and 5 (17.2%) were identified with a MADDSP developmental disability.

Conclusion

Early identification and treatment have been successful in limiting the impact of severe developmental disabilities. Continued surveillance and research are needed to monitor less severe developmental outcomes.

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

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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.

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