Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)
The Centers for Disease Control and Prevention’s (CDC) Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) estimates the number of children with selected developmental disabilities in metropolitan Atlanta. CDC began tracking the prevalence of intellectual disability, cerebral palsy, hearing loss, vision impairment, and epilepsy among children 10 years of age in 1984 as part of the Metropolitan Atlanta Developmental Disabilities Study (MADDS). The success of that study prompted CDC to establish MADDSP in 1991 in order to estimate the number of children in the metropolitan Atlanta area who had one or more of four developmental disabilities—cerebral palsy, hearing loss, intellectual disability, and vision impairment. Autism spectrum disorder was added to the program in 1996. MADDSP served as the model for the creation of the Autism and Developmental Disabilities Monitoring (ADDM) Network and, since 2000, has participated as one of the sites in the ADDM Network.
The goals of MADDSP are to:
- Provide data about how common the selected developmental disabilities are among children in metropolitan Atlanta.
- Describe the characteristics of children with one or more developmental disabilities and how these characteristics may change over time.
- Assess possible relationships between birth characteristics, such as low birthweight and premature delivery, and the occurrence of developmental disabilities.
- Provide a framework for initiating special studies.
MADDSP was established in 1991 to estimate the number of children who had one or more of four developmental disabilities—intellectual disability, cerebral palsy, hearing loss, and vision impairment in metropolitan Atlanta. In 1996, autism spectrum disorder was added as a fifth developmental disability. Prevalence estimates are made every two years. All five disabilities were tracked by MADDSP until 2012. In 2014 and 2016, conditions were limited to autism spectrum disorder, intellectual disability and cerebral palsy; in 2018 and 2020, only autism spectrum disorder was included.
From 1991-1998, disabilities were tracked among children aged 3-10 years. From 2000-2016, disabilities were tracked among 8-year-old children. Since 2018, MADDSP has included 4 year-olds, 8 year-olds, and follow up of 16- year-olds (whose records were previously included in MADDSP when they were 8 years old). From 1991-2014, the MADDSP surveillance area included five counties: Clayton, Cobb, DeKalb, Fulton, and Gwinnett. In 2016, MADDSP included DeKalb and Gwinnett Counties. In 2018, MADDSP included DeKalb and Gwinnett Counties (for 4- year-olds and 8- year-olds) and Fulton County (for 16- year-olds). In 2020, MADDSP included DeKalb County (4-year-olds and 8-year-olds) and Fulton County (4-year-olds, 8-year-olds and 16-year-olds).
MADDSP identifies children through a process known as active record review. In this process, records are reviewed every other year for children who are the appropriate age within the year of interest and live with a parent or guardian who is a resident of one of the counties included in surveillance. Trained abstractors review records and abstract detailed information at multiple health and education sources (such as clinics and schools) in metropolitan Atlanta that evaluate and provide services to children with developmental disabilities. From 1991-2016, this information was then reviewed by trained clinicians who determined whether the child meets criteria for one or more of the developmental disabilities. Since 2018, clinician review is no longer performed.
MADDSP Criteria and Definitions
MADDSP includes children:
- Who are the appropriate age (4, 8, or 16 years) during the year of interest;
- Whose parent(s) or legal guardian(s) lives in one of the selected counties in metropolitan Atlanta at some time during the year of interest; and
- Who have one or more of the developmental disabilities being tracked.
Developmental Disabilities Tracked by MADDSP
Autism Spectrum Disorder (ASD)
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.
Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture. Cerebral palsy is caused by abnormal development of the brain or damage to the developing brain that affects a child’s ability to control his or her muscles. Cerebral palsy does not get worse over time, though the exact symptoms can change over a person’s lifetime. All people with cerebral palsy have problems with movement and posture. Many also have related conditions such as intellectual disability; seizures; problems with vision; or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).
A hearing loss can happen when any part of the ear is not working in the usual way. This includes the outer ear, middle ear, inner ear, hearing (acoustic) nerve, and auditory system. Hearing loss can vary greatly among people and can be due to any number of causes.
Intellectual disability is a term used to describe when there are limits to a person’s ability to learn at an expected level and to function in daily life. Levels of intellectual disability vary greatly among children, from mild to very severe.
Vision impairment means that a person’s eyesight is not corrected to a “normal” level. Vision impairment can vary greatly among children. It can be caused by damage to the eye itself, by the eye being shaped incorrectly, or even by a problem in the brain.