INFORMATION ABOUT STATE COUNCILS
ON DEVELOPMENTAL DISABILITILIES

(See links to information about each State Council below.)

 

What Are Councils on Developmental Disabilities?

 

Councils on Developmental Disabilities were created by the Developmental Disabilities Act (DD Act) in 1970. Councils are located in every State and Territory and represent a Federal-State partnership in developing futures for and with people with developmental disabilities and their families. Councils are governed by volunteers who are appointed by Governors. More than 60% of these volunteers must be people with developmental disabilities or family members. In this way, the “customers” of the service system direct the Council’s activities.

Councils are charged by Federal law to identify the most pressing needs of people with developmental disabilities in their State or Territory and to develop innovative and cost effective ways to meet the needs in a manner that upholds the human and civil value of people with developmental disabilities. Councils work to promote the independence and productivity of people with developmental disabilities and promote systems change that will eliminate obvious inequities in areas such as employment, education, and access to healthcare. Councils work to create a community where people with developmental disabilities are naturally included and where they can enjoy the same civil liberties and quality of life as everyone else. For this vision to become a reality, Councils must continue to educate the public, change attitudes and open minds to new possibilities.

 

What are Developmental Disabilities?

 

Developmental Disabilities are significant disabilities originating any time from birth through age 21 that are expected to last a lifetime. Developmental disabilities may be cognitive, physical or a combination of both. While not always visible, these disabilities can result in serious limitations in every day activities of life, including self-care, communication, learning, mobility or being able to work or live independently. Approximately 4 million Americans have developmental disabilities. These disabilities can occur in any family, no matter what their ethnic, economic, religious or political background.

 

 

Why Do We Need Strong Councils on Developmental Disabilities?

During the 19 th and 20 th centuries, people with developmental disabilities experienced a range of labels (idiot, imbecile, moron, defective, trainable), a range of reactions (dehumanization, abuse, neglect, injuries and deaths), and a range of treatments (institutions, aversives, sterilization). These attitudes and forces reinforced the segregation, congregation and dependency of people with developmental disabilities and their families. Before the Developmental Disabilities Act passed in 1970, children with developmental disabilities in the United States could not attend schools, their families received almost no help, and many people with developmental disabilities were sent to State institutions for life. Only recently have the values of respect, dignity and citizenship emerged as applicable to the inherent worth of people with developmental disabilities. The purpose of DD Councils, as stated in the DD Act of 2000, is “systemic change, capacity building, and advocacy activities to develop consumer and family centered comprehensive systems and a coordinated array of culturally competent services, supports and other assistance to achieve independence, productivity, self-determination, integration and inclusion (IPSII) into the community for individuals with developmental disabilities and families.” Note the five major goals of the DD Act: independence, productivity, integration and inclusion, and self-determination, to reverse the historical bias against people with developmental disabilities. Councils’ work to implement these goals and reverse the historical bias against people with developmental disabilities has helped to bring about some remarkable changes:

• Society now expects that children with developmental disabilities will grow up in families and that families will receive needed supports.

• The total number of people with developmental disabilities in State institutions has dropped by 70%.

• Children with developmental disabilities are going to school, often in their own neighborhood.

• Adults with developmental disabilities have jobs in increasing numbers and live in their own homes.

 

People with developmental disabilities are becoming more valued, contributing members of their local communities. However, the work of the Councils on Developmental Disabilities is far from finished. Far too many people with developmental disabilities are not included in their local communities and remain isolated from everyday experiences of friendship, employment, and participation in civic life. Many remain on long waiting lists for needed services and many children are still sent to segregated classrooms and schools. Adults with developmental disabilities experience the highest rate of unemployment of any group of Americans.

People with developmental disabilities and their families depend on Councils on Developmental Disabilities to make responsive changes in policies and programs at the State level. Councils’ efforts, led by people with developmental disabilities and their families, have led to less dependence on formal government services and a better quality of life for millions of citizens.

 

 

The Relationship of Councils on Developmental Disabilities to the Administration on Developmental Disabilities

The Administration on Developmental Disabilities (ADD) is the U.S. Government organization responsible for implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act. ADD, its staff and programs, are part of the Administration for Children and Families, of the U.S. Department of Health and Human Services. All Councils on Developmental Disabilities maintain reporting relationships with ADD. Each Council must submit an annual report and five year plan to ADD. The annual report contains customer satisfaction data, results of grant activities and a fiscal report. ADD reviews these documents to ensure that Councils comply with the regulations associated with implementation of the DD Act.

 

Council Information Resource Pages