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A significant proportion of families in the United States provide care for an adult child who has a cognitive impairment. Significant issues may arise in the context of providing this care, including medical concerns, the nature of the relationship between the adult cognitively impaired child and his or her parents, safety concerns in the home, difficulties that the adult child may face in the community, and employmentrelated issues. We focus, as well, on the need to plan for the future through the execution of powers of attorney, living wills, and accessing government benefits for the individual. Caregiver stress is also a concern. We provide various alternatives for the management of these issues.
Keywords: child; cognitive impairment; disability; Social Security; Medicare; Medicaid
Cognitive impairment is a broad term that encompasses many different disabilities. Generally, an individual with a cognitive disability has greater difficulty with one or more types of mental tasks than does the "average" person. Cognitive disabilities may involve intellectual impairment, learning disabilities, and/or impaired reasoning and judgment. A cognitive disability usually has a basis in the biology or physiology of the individual and is often the result of a traumatic brain injury or genetic disease (American Psychiatric Association, 2000). Examples of cognitive disabilities include learning disabilities, such as dyslexia or dyscalculia, attention deficit/hyperactivity disorder, disabilities caused by traumatic head injury, stroke, or meningitis, Down syndrome, autism, and dementia (American Psychiatric Association, 2000). The adult child may also suffer from a range of physical conditions or limitations.
It is estimated that 19% to 22% of families in the United States are caring for an adult with a cognitive impairment (Los Angeles Caregiver Resource Center, 1999). Other studies have shown that 1 in 5 households include a special needs child and that over 12 million children in the United States have special health care needs (Jasper, 2005). Additionally, most of these children reside at home with their parents (Jasper, 2005). Forty percent of people who need assistance to carry out everyday activities, or approximately 5.1 million persons, are between the ages of 18 and 64 (Health Projects Center, 2005).
These data highlight the fact that there are thousands of families assisting individuals with moderate to severe cognitive disabilities with all activities of daily living, including...