Use of Special Education Services among Children with Congenital Heart Defects
New CDC study findings in Pediatrics show that children with congenital heart defects (CHDs) received special education services more often than children without birth defects. These findings highlight the need for special education services and the importance of developmental screening for all children with CHDs. State policymakers and school systems might find this information valuable as they plan for services. Read the abstract to the paper here.External
What did we already know?
Previous studies have shown that children with some types of CHDs might be more likely to have problems with brain development and function compared to children without birth defects. Therefore, these children might benefit from special education and other developmental services. In 2012, the American Heart Association in partnership with the American Academy of Pediatrics published guidelines for developmental screening of children with CHDs.External However, information is needed on how often children with CHDs use special education services and the types of services that might be beneficial for them.
What does this study add?
In this CDC study published in Pediatrics, researchers looked at special education services received by children with CHDs and children without birth defects who were born in metropolitan Atlanta. Compared to children without birth defects, children with CHDs were more likely to receive special education services. Certain types of special education services were also more common among children with CHDs. These findings highlight the importance of developmental screening for all children with CHDs to ensure they are receiving the services they need.
What were this study’s main findings?
- Children with CHDs who did not have any other birth defects were 50% more likely to receive special education services compared to children without birth defects.
- Particular needs for special education were more common among children with CHDs:
- Intellectual disability
- Sensory impairment, meaning a child is deaf, hard of hearing, blind, or has visual impairment
- Significant developmental delay
- Specific learning disability
- Other health impairment, meaning that because of a health condition (for example, a CHD or attention-deficit/hyperactivity disorder) the child has a limited alertness in his/her educational environment, which affects performance and requires specialized instruction
- Increased use of certain special education services occurred among both those with a critical CHD (types of CHDs that need surgery or other procedures in the first year of life) and those with a non-critical CHD. This means that the increased use of special education services observed overall among all children with CHDs was likely not because more children with critical CHDs needed services.
About this Study
- For this study, researchers looked at children with a CHD born in metropolitan Atlanta from 1982 to 2004. They also looked at children without a birth defect born in metropolitan Atlanta during the same time period. Researchers then linked all these children to data about use of special education services for the 1992-2012 school years. Researchers analyzed this linked data to assess use of special education services among children with CHDs compared with children without birth defects.
- Children with genetic syndromes or birth defects besides CHDs were not included in this study.
- Children with CHDs were classified by their type of CHD and whether or not they had a critical CHD.
Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of―or about 40,000―births per year.1 CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. About 1 in 4 babies born with a heart defect has a critical CHD.2 Babies with a critical CHD need surgery or other procedures within the first year of life.
Heart Defects: CDC’s Activities
The Centers for Disease Control and Prevention (CDC) works to identify causes of CHDs and ways to prevent them. We do this through:
- Surveillance or disease tracking:
- CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP). CDC also funds population-based state tracking programs. Birth defects tracking systems are vital to help us find out where and when birth defects occur and whom they affect.
- CDC funds projects to track CHDs across the lifespan in order to learn about health issues and needs among all age groups.
- CDC, in partnership with March of Dimes, surveys adults with CHDs to assess their health, social and educational status, and quality of life. The survey is called CH STRONGExternal, Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG.
- Research: CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (NBDPS) (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) (began with births in 2014). These studies are working to identify factors that put babies at risk for birth defects, including heart defects.
- CDC is assessing states’ needs for help with CCHD screening and reporting of screening results. CDC helps states and hospitals better understand the cost and impact of CCHD screening. CDC also promotes collaboration between birth defects tracking programs and newborn screening programs to improve understanding of the effectiveness of CCHD screening.
- CDC provides technical assistance to the Congenital Heart Public Health ConsortiumExternal (CHPHC). The CHPHC is a group of organizations uniting resources and efforts in public health activities to prevent congenital heart defects and improve outcomes for affected children and adults. Their website provides resources for families and providers on CHDs.
Special education is instruction that is specially designed to meet the unique needs of a child with a disability.3 The Individuals with Disabilities Education Act (IDEA)External is a federal law that ensures that all children with disabilities, from birth through 21 years of age, can get free, appropriate public education that emphasizes special education and related services designed to meet their unique needs.
CDC’s Activities: Special Education
In partnership with the Georgia Department of Education and nine public school districts in the five central counties of metropolitan Atlanta, CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program collects information on children between the ages of 3 and 10 years who receive special education services. This information, which has been collected annually since the 1990’s, is known as the Special Education Database of Metropolitan Atlanta. These data can be linked with information about children with specific health outcomes, like birth defects or developmental disabilities, to help us assess who is receiving services and the types of services used most often.
To learn more about congenital heart defects, please visit https://www.cdc.gov/heartdefects/.
- Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998-2005. J Pediatr. 2008;153(6):807–813.
- Oster M, Lee K, Honein M, Colarusso T, Shin M, Correa A. Temporal Trends in Survival for Infants with Critical Congenital Heart Defects. Pediatrics. 2013; 131:e1502-e1508.
- U.S. Department of Education. https://idea.ed.gov/explore/view/p/,root,regs,300,A,300.8,.htmlExternal.