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                          Speeches and Testimony October 31, 2016
      

            Jennifer Johnson, Deputy Commissioner, Administration on Disabilities
      

            Fifty three years ago today, President John F. Kennedy signed a historic piece of legislation that we now know as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act).
At the time, people with developmental disabilities (DD) faced exclusion from many spheres of public and private life, including most schools and community spaces. Many spent nearly their entire lives in large, state-run institutions that were often grossly underfunded and where reports of systemic abuse and neglect were common.
Speaking in Montgomery, Ala. this summer, Administration on Disabilities Commissioner Aaron Bishop explained how he came to see the parallels between the segregation and discrimination faced by people with DD and his family’s experiences of racial segregation and discrimination.
Bishop also describes the evolution of DD Act programs and their impact in Alabama and across the country over the last 53 years.
In that time, as the DD Act has grown to provide a broader range of programs that aim to improve integration and inclusion of people with DD, so too have the opportunities for people with DD to live and thrive in the community.
Today, DD Act programs, funded by ACL, in every state and territory empower individuals with DD and their families to help shape the policies that impact them. DD Act programs conduct important research and test innovative new service delivery models. They work to break down barriers and bring the latest knowledge and resources to those who can put it to the best use—including self-advocates families, service providers, and policymakers. And DD Act programs investigate cases of alleged abuse and serve as advocates for individuals with DD and their families.
Watch Commissioner Bishop’s full remarks on civil rights, the history of the DD Act, and the work that lies ahead. He spoke at the Alabama State Capitol during an event hosted by the Alabama Disabilities Advocacy Program (ADAP).

Replies
Name
Date
CommentJoan
October 31, 2016
While ACL does indeed fund DD Act programs, unfortunately, ACL is allowing the disempowering of many families, whom according the Federal law, should have respectful representation on state DD Councils. ACL staff promised a response “within a few weeks” to public comment submitted May 31, 2016, regarding the erosion of transparency of the Kansas Council on Developmental Disabilites and discriminatory treatment of certain family members serving on the Kansas DD Council. Additionally, DD Act programs continue to ignore mounting tragic outcomes of our nation’s most fragile citizens, who are being evicted from Intermediate Care Facilities, under the guise of an “Integration Mandate.” Please show honor and respect for struggling families who have legitimate concerns, whose voice is being undermined in current policy-making. Thank you for the opportunity to provide comment. Joan Kelley, Legal Guardian for Aidan Kelley, age 26, Gardner, Kansas. Member, Kansas Council on Developmental Disabilites. Vice-President, KNI Parent Guardian Group. Volunteer State Coordinator, VOR - www.vor.net. 785-218-7195. Copies of this comment sent to: US Congressman Kevin Yoder, US Senator Jerry Moran, US Senator Pat RobertsRebecca
November 1, 2016
The DD Act has indeed empowered many with developmental disabilities and their families to help shape the policies that impact their lives. The DD Act has also marginalized a segment of the disability community in the process. Individuals with extreme and profound developmental and intellectual disabilities compounded by complex medical needs find themselves left out of those discussions to help shape the policies that impact their lives. Across the country, DD Act programs are becoming increasingly aggressive in their efforts to undermine, weaken and eliminate the institutional system of care providing competent and coordinated medical care to our most medically fragile citizens with profound and extreme developmental disabilities who require ongoing monitoring and assessments to respond to their rapidly changing conditions. As mom to one of those individuals, I find myself in battle with the very DD Act programs authorized and federally funded to advocate for our adult son as they engage in activities to eliminate our son’s highly specialized congregate care setting--against our wishes. Impossible for me to fathom how these DD Act programs can advocate for individuals like our son whom they never visit, never attend program reviews, and never participate in medical appointments and consults.

                    *Last modified on 05/07/2020*
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