Top 10 Things We Can Do to Preserve DD Act Programs

I was Commissioner of the Administration on Developmental Disabilities in the Department of Health and Human Services  from August 2001-January 2009. Under a reorganization in the Obama Administration, the programs I had overseen — State Disability Councils, State Protection and Advocacy Agencies, University Centers on Developmental Disabilities, and Projects of National Significance (authorized under the Developmental Disabilities Assistance and Bill of Rights Act (DD Act)) and the disability-related provisions in the Help America Vote Act — were moved to a new unit, Administration on Community Living. Now, under the Trump Administration, all of these programs for individuals with disabilities are targeted for elimination. This would require enactment of new legislation. It could also be accomplished if Congress did not fund these programs. Or, it could be accomplished by the Trump Administration ignoring any specific direction from Congress. In such a case the courts, as is being demonstrated by current lawsuits on other matters, would need to be called upon to resolve the issue. Even then, the Trump Administration could choose to ignore any decision it didn’t like. The court system does not have its own enforcement agency. 

So what do we do? We must engage the Trump Administration. Provide facts about how lives are changed for the better through these programs.

Programs under the Individuals with Disabilities Education Act (IDEA) are apparently being moved to the Department of Health and Human Services. It is a mystery as to how they were saved from elimination. If we find an answer to that question, maybe that will shed light on how we preserve, with funding, those currently in the Administration on Community Living that serve people with disabilities.

Until we get that answer, here are some things we can do to engage and provide constructive pressure to preserve programs that have worked as a catalyst to bring about greater independence and meaningful community participation for so many individuals with disabilities.

1. Demonstrate how the principles underlying IDEA are also the foundation of programs under the DD Act using personal stories, photos, and videos. This strategy was very effective when we were working on IDEA ‘97 and the Americans with Disabilities Act in 1988-1990 when engaging with Congress. If the Trump Administration can see parallels, then preservation of DD Act programs is more likely.
2. Connect with leaders in conservative think tanks; reinforce how assisting individuals with disabilities to achieve maximum independence is consistent with conservative principles.
3. Urge nonprofits with interests in federal support to join us in connecting with state leaders to ask them to ask Congress not to pass new legislation to terminate any programs that promote the independence of people with disabilities.
4. Identify people with contacts among leadership in all federal departments that impact people with disabilities and ask them to assist in educating this leadership about the benefits of sustaining rights and programs for people with disabilities.
5. Identify people with leadership positions in the Trump Administration who have family members with disabilities and reach out to them,  soliciting their assistance in sustaining federal rights and programs for people with disabilities. 
6. Develop a data base of contacts and a record of engagement so that it can be used repeatedly to apply focused engagement with the Trump Administration.
7. Develop a reservoir of examples of what happens when federal assistance has been provided and examples of what happens when such assistance is withdrawn from people with disabilities, compile both individual and community-based outcomes. Attach examples to specific people, so they may be contacted for media coverage and be included in floor statements of Members of Congress. 
8. Establish a steering committee to monitor and share efforts of engagement with the Trump Administration.
9. Create a web-based repository for storing and accessing personal stories, pictures, and videos, which can be searched by state or topic.
10. Share personal stories on social media platforms, such as a theme a week.

I know these activities have been started, but we must find a way to coordinate grassroots and national efforts so that we can give everyone what they need to have a powerful impact  alone and with the rest of us. 

Thank you. 

 Common Grounder