For twenty-six years the month of March has been known as National Developmental Disabilities Awareness Month. The declaration was made by President Ronald Reagan and tremendous strides have been made over the years to promote and protect the rights of people with Intellectual and Developmental Disabilities (I/DD) to live, learn, work and play as valued and contributing members of their communities. The proclamation which states, “For many of these people with developmental disabilities there is now the prospect of a brighter future and greater opportunity. Americans are becoming increasingly aware that such disabilities need not keep individuals from realizing their full potential in school, at work or at home, as members of their families and of their communities.” When President Reagan signed the proclamation in 1987 the estimation of the number of individuals in the US with developmental disabilities was 4 million. Now it is estimated that there are over 7 million individuals with I/DD in the U.S. alone. (Arc of the U.S.)
Not only are there many strong organizations such as The Arc, Easter Seals/United Cerebral Palsy, the Autism Society, etc. but individuals with I/DD themselves have become some of the strongest advocates over the years. Individuals with I/DD were instrumental in getting President Obama to sign Rosa’s Law in 2010. This law eliminates outdated and derogatory terminology in federal legislation. This legislation was a result of the public campaign to end the use of the “r” word which eliminates the use of the term “retarded” and other derogatory terms at the federal level and discourage the use by the public at large. Rosa’s Law and other legislation have helped change the attitudes about individuals with I/DD.
An intellectual disability (previously known as mental retardation) is defined as a disability that occurs before the age of 18. It is characterized by a significant limitation in intellectual functioning and adaptive behavior. It is diagnosed through the use of standardized tests of intelligence and adaptive behavior. Intellectual disability is generally thought to be present if an individual has an IQ test score of approximately 70 or below. This is the definition according to the American Association on Intellectual and Developmental Disabilities (AAID, 2009).
In addition to the IQ which is indicative of the individual’s ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, learn quickly and learn from experience, it also involves adaptive behavior. Adaptive behavior is the collection of conceptual, social and practical skills that have been learned by people in order to function in their everyday lives. (AAID) These adaptive behaviors affect their ability to respond to situations in their environment. Some of these areas are in receptive and expressive language, reading and writing, money concepts and self direction. Other areas involve social and practical skills such as interpersonal skills and daily living skills such as eating, dressing, bathing, mobility and safety.
Developmental Disabilities (DD) according to Public Law 106-402 means a severe, chronic disability that is attributed to mental or physical impairments that occur prior to the age of 22 and are likely to continue indefinitely and result in substantial functional limitations in three or more major life activities. These major life activities are self care, receptive and expressive language, learning, mobility, self-direction, capability for independent living, economic self sufficiency and that reflects a need for a combination of services and individualized supports or other forms of assistance that are lifelong. Developmental disabilities can include intellectual disabilities as well as cerebral palsy, autism, autism spectrum disorders, epilepsy, developmental delay, fetal alcohol syndrome and many other syndromes and neurological conditions that can result in the impairment of general intellectual functioning or adaptive behavior similar to that of a person with intellectual disabilities.
The major differences in these two definitions are in the age of onset, the severity of limitations and the fact that the developmental disability definition does not refer to an IQ score. Many individuals with intellectual disability will also meet the definition of developmental disability however it is estimated that at least half of the individuals with intellectual disability will not meet the functional limitations of the DD definition. (Arc of the US)
The effects of these disabilities vary considerably among people who have them just as the range of abilities vary considerably as with all people. Children may take longer to learn to speak, walk and take care of their personal needs such as dressing or eating. Learning in a school setting may take longer. As adults many people, particularly those with only an intellectual disability, may be able to lead independent lives in the community without paid supports. A small percentage will have very significant disabilities that will require constant care and support. The middle group can be successful with supports that encourage as much independence as an individual is capable of achieving in their every day life.
In North Carolina children in the school system have access to educational supports through their individualized habilitation plan. These protections come through the Individuals with Disabilities Education Act (IDEA). Adults with I/DD do not have an entitlement in the current system. Individuals who want support services must apply through their Managed Care Organization. In the seven western counties this is through Smoky Mountain Center (www.smokymountaincenter.org). Supports are then provided according to each person’s individual service plan.
For additional information on Intellectual and Developmental Disabilities you can visit the following web sites: The Arc of North Carolina (www.arcnc.org), The Autism Society (www.autismsociety-nc.org), Easter Seals/United Cerebral Palsy (www.nc.eastersealsucp.com), American Association on Intellectual and Developmental Disabilities (www.aaidd.org)
For information on potential grant funding to support services and programs for individuals with disabilities contact the Evergreen Foundation. The mission of the Evergreen Foundation is to improve access to and public awareness of quality prevention, treatment, and support services by the provider community to individuals and families with intellectual/developmental disabilities, behavioral health, and/or substance abuse needs in Cherokee, Clay, Graham, Haywood, Jackson, Macon and Swain counties. To learn more about the Evergreen Foundation call 828-456-8005.