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What is a Developmental Disability?
The DD Act Definition of Developmental Disability
The term “developmental disability means a severe, chronic disability of an individual that is attributable to a lifelong mental or physical impairment or combination of mental and physical impairments; that is manifested before the individual age of 22 and results in substantial functional limitations in 3 or more of the following areas of major life activity:
- Self Care
- Receptive and expressive language
- Self direction
- Capacity for independent living
- Economic self-sufficiency
and, reflects the individual's need for a combination and sequence of special, interdisciplinary or generic services, individualized supports, or other forms of assistance that are lifelong or extended duration and are individually planned and coordinated.
The Developmental Disabilities Assistance and Bill of Rights Act (DD Act)
Since 1963, the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) has made a crucial difference in the lives and futures of individuals with developmental disabilities and their families. Through the DD Act, federal funds support the development and operation of Councils on Developmental Disabilities, Protection and Advocacy Systems, University Centers (formerly known as University Affiliated Programs), and Projects of National Significance.
This crucial investment has provided the structure to assist people with developmental disabilities to pursue meaningful and productive lives. These programs have made community living possible for individuals with significant disabilities across our nation. The DD Act has led to further federal legislation in support of all people with disabilities.
When the DD Act was first conceived, the primary emphasis was on the advancement of scientific understanding, professional education, and ensuring access to, and safety of, institutional facilities. Later changes, as conceived by Dr. Elizabeth Boggs, Dr. Elsie Helsel, and others, focused on the efforts of families, professionals, and state agencies to improve supports for all people with developmental disabilities. Today, the programs emphasize fundamental systems change, including legal services, advocacy, and capacity building at the state and local levels. The focus is on listening to people with developmental disabilities as self advocates, and helping people with developmental disabilities and their families obtain the information, assistive technology, and supports they need in order to make more informed choices about how and where to live and work, and be active and involved citizens in their communities.
According to the Centers for Disease Control and Prevention (CDC) there are an estimated 4.5 million people with cognitive and other developmental disabilities living in the United States, including approximately 150,000 individuals in New Jersey. Given the probability of encountering someone with a developmental disability, it is essential to ensure that fellow citizens include and respect them in all facets of community living.
Thirty years ago infants born with obvious signs of a developmental disability were often placed in an institution where they were expected to live their entire lives. Some lived in those settings for forty or fifty years, before being moved into community settings. Children with developmental disabilities are now being raised at home and usually attend community schools, taking classes alongside their peers without disabilities. Many adults with developmental disabilities, including those formerly living in institutions, hold jobs and live independently in their communities. People with developmental disabilities live in our communities; with their families, in group homes, in supported living arrangements or independently. They are moms and dads, sons and daughters, coworkers, scientists, data entry clerks, factory workers, and more. Like gender, ethnicity and other traits, a developmental disability is simply one of many characteristics that contribute to the diversity of humankind.
The world of developmental disabilities encompasses many diagnoses with hundreds of physical and mental signs and symptoms. All people with developmental disabilities have different physical and/or mental limitations. Not all require the same supports or services.
In spite of their disability, individuals with developmental disabilities experience joy, anger, pride, jealousy – the entire range of human emotions. All people with developmental disabilities experience the many facets of life. They can, and do, adapt to changing situations. Many enjoy life independently or with a minimum of supports and live or work alongside people without disabilities. The only labels required are their names.