Developmental Disabilities Act Provides a Mandate for Self-advocacy
“Self-advocacy has been a cornerstone of the Developmental Disabilities movement in the
United States, starting over 35 years ago with the original People First organizing efforts.”
With this statement, Sharon Lewis, Commissioner of the Administration on Intellectual and
Developmental Disabilities (AIDD), began a letter proposing a series of regional selfadvocacy summits.
According to Commissioner Lewis, “The Developmental Disabilities Act (DD Act) makes
clear the importance of the voice, influence and power of people with intellectual and
developmental disabilities.” This legislation has authorized a network of agencies for each
state―the State Developmental Disabilities Councils (SDDCs), the University Centers for
Excellence in Developmental Disabilities (UCEDDs) and the Protection and Advocacy
agencies (P&As). These agencies “are expected to encourage and support the involvement
of self-advocates,” the commissioner wrote.
Delaware’s network includes the Delaware Developmental Disabilities Council, the Center
for Disabilities Studies and the Disabilities Law Program of Community Legal Aid Society,
Inc. They are funded, in part, by the Administration on Intellectual and Developmental
Disabilities (AIDD), which was known as the Administration on Developmental Disabilities
(ADD) until mid-April 2012. Network partners use the funding to achieve AIDD’s major
goal: to partner with state governments, local communities and the private sector to help
people with intellectual and developmental disabilities reach their maximum potential
through increased independence, productivity and integration within the community.
Ensuring self-advocacy
Empowering individuals with developmental disabilities to become self-advocates aligns
with the AIDD mission of “ensuring that individuals with developmental disabilities and
their families participate in the design of and have access to culturally-competent needed
community services, individualized supports and other forms of assistance that promote
self-determination, independence, productivity and integration and inclusion in all facets of
community life.”
When Commissioner Lewis proposed the self-advocacy summits, she noted, “Throughout
the country, thousands of self-advocates are working at the local, state and national level to
improve the lives of people with disabilities. Collectively, we have accomplished a great
deal, but we still have much further to go…”
As of result of the commissioner’s proposal, regional self-advocacy summits were held in
2011 and 2012. Each state’s delegation included representatives of its developmental
disability network and self-advocates. Delaware was part of the regional summit that took
place in Baltimore in March 2012 (see page 4).
Community Living Initiative
The change in ADD’s name, to include intellectual as well as developmental disabilities,
followed the creation of a new federal agency, the Administration for Community Living
(ACL), within the U.S. Department of Health and Human Services (HHS). The goal of the
new agency is to increase access to community supports and full participation while
focusing attention and resources on the unique needs of older Americans and people with
disabilities. The ACL will include the efforts and achievements of the Administration on
Aging, the Office on Disability and AIDD in a single agency.
In her announcement about the ACL on April 16, 2012, HHS Secretary Kathleen Sebelius
said, “All Americans―including people with disabilities and seniors―should be able to live
at home with the supports they need, participating in communities that value their
contributions.” She noted that, building on President Barack Obama's Year of Community
Living Initiative, “the ACL will pursue improved opportunities for older Americans and
people with disabilities to enjoy the fullest inclusion in the life of our nation.”
There has been favorable reaction to the new agency from many of Delaware’s advocates
for the rights of individuals with disabilities. Lisa Furber, senior paralegal with the
Disabilities Law Program, said that additional focus placed on community living will help
ensure that people are living in the least restrictive and most independent environment.
Jane Gallivan, director of the Division of Developmental Disabilities Services, said the new
structure will reinforce changes in community living initiatives she is working to
implement in Delaware. “It will support people to get jobs and live as independently as
possible in their communities. It takes the focus away from institutional living. I am looking
forward to innovative federal policy to support diverse choices for programs and funding
for individuals and their families to live in their communities. ”