Trends in the Prevalence of Developmental Disabilities in US Children, 1997-2008 (Boyle, 2011)

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Developmental disabili9es begin any9me during the developmental period and usually last throughout a person’s life9me. Most developmental disabili9es begin before a baby is born, but some can happen aEer birth because of injury, infec9on, or other factors. Most developmental disabili9es are thought to be caused by a complex mix of factors. These factors include gene9cs; parental health and behaviors (such as smoking and drinking) during pregnancy; complica9ons during birth; infec9ons the mother might have during pregnancy or the baby might have very early in life; and exposure of the mother or child to high levels of environmental toxins, such as lead. For some developmental disabili9es, such as fetal alcohol syndrome, which is caused by drinking alcohol during pregnancy, we know the cause. But for most, we don’t.

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At least 25% of hearing loss among babies is due to maternal infec9ons during pregnancy, such as cytomegalovirus (CMV) infec9on; complica9ons aEer birth; and head trauma. Some of the most common known causes of intellectual disability include fetal alcohol syndrome; gene9c and chromosomal condi9ons, such as Down syndrome and fragile X syndrome; and certain infec9ons during pregnancy, such as toxoplasmosis. Children who have a sibling are at a higher risk of also having an au9sm spectrum disorder. Low birthweight, premature birth, mul9ple birth, and infec9ons during pregnancy are associated with an increased risk for many developmental disabili9es. Untreated newborn jaundice (high levels of bilirubin in the blood during the first few days aEer birth) can cause a type of brain damage known as kernicterus. Children with kernicterus are more likely to have cerebral palsy, hearing and vision problems, and problems with their teeth. Early detec9on and treatment of newborn jaundice can prevent kernicterus.

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Over 75% of people with I/DD live with families, and more than 25% of family care providers are over the age of 60 years and another 38% are between 41-59 years (Braddock, Hemp, & Rizzolo, 2008). Without a mandate for support to adults with I/ DD and their families, most of these families receive few support services and face long residen9al services wai9ng lists, es9mated at roughly 115,000 families na9onally (Lakin, Larson, Salmi, & Scod, 2009). An urgent need exists for aging adults with I/DD and their families to have access to quality supports that address their age-related health and social changes. Public policies have increasingly supported the rights of people with disabili9es to live in communi9es of their choice. Making this relevant to people with I/DD requires a corresponding increase in environmental supports to allow their full community par9cipa9on. Un9l the age of 21 years, persons with I/DD are eligible to receive support services (i.e., educa9on, training, health promo9on) through the Individuals with Disabili9es Educa9on Act (IDEA, PL 101-476). When eligibility for these services ends, the task of securing support shiEs from the educa9onal system to the individual and family or other caregivers. This task becomes more challenging over the lifespan as aging-related changes impact both the person with I/DD and suppor9ng family members. Key challenges that must be addressed by communi9es, families, and adults aging with I/DD include the following: (a) improving the health and func9on of adults aging with I/DD and their families, (b) enhancing consumer

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