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Independent Living News & Policy from the National Council on Independent Living

Reminder – Call for Stories: Snapshots of Our Lives

The National Organizing Project, a collaboration between ADAPT and NCIL, is asking for your help in collecting stories that we can use on the Hill talking with legislators.

Stories about Community Living

We are looking for are stories depicting the importance of Community Living. We would like to be able to use these stories when talking about the Disability Integration Act, the Empower Care Act, the Home and Community Based Services (HCBS) Settings Rule, Money Follows the Person, and other related legislation and policies aimed at ending the institutional bias. We are looking for:

  • Stories from people stuck in facilities waiting to get out
  • Successful transitions out of nursing homes or other institutional facilities to the community (please include specific programs that were used, including HCBS Waiver programs, Money Follows the Person, etc.)
  • Successful diversions from facilities through use of HCBS Waivers and related services, and
  • Stories from people on waiting lists for services.

Stories about the ADA

We are also looking for stories about the Americans with Disabilities Act. We are looking for:

  • Stories about persistent access barriers that are preventing full participation, and
  • Stories about how the ADA has allowed folks to live fully included lives in the community.

While we recognize that there are many areas of access that need addressing, currently we are focusing on Title III (physical access to public spaces) because of the recent threats to Title III of the ADA with “notice and cure” type bills. If you are sending a story about physical access barriers, please send a picture with your story if possible.

Our goal is to get at least three stories for each topic per legislator. You can help us reach that goal!

Please send stories by June 15, 2018 to Please include your first name (or initials), your city and state, the names of your Senators and Representative, a photo (preferred but optional), and 2-3 paragraphs concisely telling your story. Please also note that we are regularly meeting with legislators and may contact you for stories before the 15th in order to bring those stories into meetings with us.


  1. My name is Gary Carson and I am a T8 paraplegic whose disability hasn’t slowed me down one bit. I became a Disability Advocate and saw the deep underbelly of the state of living for persons on SSI, SSDI and other programs that were designed to help us but in fact, and due to regulations, hinder our progress more than they help. In my last case, I argued against a large multi-family corporation who was taking advantage of its residents who are mostly indigent, elderly and disabled. I was successful in my attempts to win the case which showed the corporation was in violation of at least five counts of the Fair Housing Act and other federal laws, for not allowing accessible accommodations to my client but, the overall state of the property where we live, and which is partially funded by HUD and the state of Kansas, is in terrible shape despite a recent renovation. The way the rules are set up now, I am unable to lodge complaints against the corporation for many serious violations of federal law because they didn’t affect me personally but did affect the lives of other residents who are afraid to come forward for fear of retaliation and possible eviction. It would be great if I were allowed to go to HUD and explain every issue one by one and have HUD enforce federal laws but the way the system is set up now, I am unable to do so and many, many people are suffering. Something needs to change!

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