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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 sheryl@ncil.org. 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.

Comments

  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!

    • Annie Harris-Meachem says:

      Gary, I totally agree with you! 2 years ago, my personal care assistant and I decided to legally marry in order to keep me from being put into a nursing home rather than being given appropriate home based care. In the fall of 2015, I became very ill with pneumonia and Mount Nittany Medical Center n State College, PA refused to care for me. I am an African American woman born in with cerebral palsy in 1949 and it was obvious that the medical community knew very little about my disability and the opinion, based on ignorance and fear, made it clear that they thought I had received enough care in my life. I was told by the charge nurse that if i did not leave the hospital that I would be physically moved to the parking lot. I returned to my apartment where m church brought enough food for a month for my friend, Clark, and I where he nursed me back to health.
      When Clark realized what would likely happen to me if he hadn’t been there for me, he asked me to marry him! That was over 3 years ago and we just celebrated our 2nd wedding anniversary on June 5, 2018 and are living in Tampa, Florida.

      Many things definitely need to change not only in health care, but also in the way people with disabilities are viewed. Especially those of us whose disability carry a high social stigma. Even physicians are afraid of what they do not understand and cannot control. This ha given rise to an increase in abuse of all kinds and unnecessary deaths and must end.

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