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

Share Your HCBS Story with Us

Congress is currently considering a huge investment in home and community based services (HCBS). This investment could go a long way toward making community living for all a reality – but it’s not a done deal yet.

Disabled people have the right to live in our communities with control over our lives, including our supports and services. To that end, the National Council on Independent Living (NCIL) has been working closely with Congress, the Administration, and partner organizations in DC to make sure this critical investment happens – and to make sure it is done in the most thoughtful and inclusive way possible.

As part of these efforts, NCIL is looking for stories to share with Congress about the importance of HCBS, including (but not limited to):

  • Stories from people whose HCBS have enabled them to remain in their homes and / or participate more fully in their community
  • Stories from people who are on the waiting list for HCBS, and how not having these services has impacted their lives
  • Stories from people who have been able to transition out of institutions / congregate settings because of HCBS

Our goal is to collect these stories and send them to Congress by Thursday, June 10. Please submit stories through the online form or by emailing comments@ncil.org by Wednesday, June 9 at Midnight. If you submit your story by email, please include the following information:

  • Your name (you can write “Anonymous” if you do not want to share your name):
  • The city you live in (optional):
  • The state you live in:
  • Your story, in 1-3 paragraphs:
  • May we contact you if necessary for additional follow-up?

Comments

  1. I was born with cerebral palsy and I am in a wheelchair with limited mobility. I have never let my disability define me, it actually has strengthened me to not let it stand in my way of doing and accomplishing anything. Throughout the years I encouraged others to get out and be a part of the community and do things they enjoy. I did not hesitate to contact our Houston Mayor Sylvester Turner to help recognize World Cerebral Palsy Day on October 6, 2020. The Mayor agreed and Houston City Hall along with our bridges were lit up in green which is the color for Cerebral Palsy on October 6th.
    Being an avid sports fan I have had the good fortune to represent two of our major professional sports teams, the Astros and the Rockets. In 2009, I was chosen by MLB and People Magazine to represent the Astros at the MLB All Star Game in St Louis as a People All Star Among Us winner due to The Gary J. Lynn Foundation, a 501c3 which now raises money for TIRR Memorial Hermann Hospital, robotics floor to help immobile people become mobile. I was chosen to be on a film with the five past living Presidents in 2009. That film was being shown in the Presidential Libraries for many years. In 2010, the Astros chose me as their Hometown Hero, and I threw out the first pitch. The same year I was chosen to be on CBS The Early Show as the first Early’s Angel for my foundation. My segment was chosen highlight of the year. I was also honored at the Plaza Hotel in New York City with the honorable Paul Volker and John Amos who was the father on the television show “Good Times” for the awareness I brought to Cerebral Palsy. In 2017, the Houston Rockets chose me as their Super Fan. The NBA came to Houston and filmed a commercial with me which was seen all over the world. I was the first disabled Red Rowdy with the Rockets. A Red Rowdy must try out and do their best to attract the judges. I have been a Red Rowdy for seven years. We get season tickets to home games. I am very active and involved in the community and attend wheelchair dancing and power soccer classes at West Gray along with adaptive art lessons. I was chosen by United Spinal National to advocate bills and disability policies with Congressional representatives to make sure these bills and policies will pass as laws. I am also working with members of the Houston City Council to make improvements to repair broken sidewalks and enhance public transportation for people with disabilities.
    The Gary J. Lynn Foundation holds many fundraisers throughout the year including a golf tournament. I have raised and donated $15,000.00 for Cerebral Palsy Research and $45,000.00 to TIRR Memorial Hermann’s new Neuroscience Institute, robotics floor to help immobile people become mobile including those with cerebral palsy.
    I am in college and a member of Phi Theta Kappa Honor Society with plans to receive a Political Science degree to help those with disabilities. I have faced many challenges which have never stopped me. I was honored with the Community Empowerment Award by Congresswoman Shelia Jackson Lee, In 2019 I was chosen Humanitarian Of The Year along with Tilman Fertitta and James Harden’s mother. Recently I was inducted into the Phi Theta Kappa Hall of Honor and was voted Outstanding Phi Theta Kappa Chapter Member for projects I worked on during the semester. I have won the Mayor’s Disability Advocate of the Year Award twice under Mayor White and Mayor Turner. In 2019 Mayor Turner honored me with a proclamation and declared December 10th, Gary J. Lynn Day in Houston. Thanksgiving and Christmas my family and I along with my foundation sponsor, Chris Alan, owner of Christian’s Tailgate volunteer at George R. Brown Convention Center helping to feed the poor and homeless. I knew President Bush Senior very well and he chose to tell my story on a video with the five living Presidents in 2009 when I represented the Houston Astros at the MLB Allstar Game in St. Louis. I was one of thirty People Allstars Among winners from MLB and People Magazine. Five of the thirty winners were then chosen to have their stories told by one of the five living Presidents which aired during the pregame show of the Game on Fox Sports. I was honored and proud to be on the film which played in all five Presidential Libraries. It was a thrill and joy to spend time with and get know George Bush Sr. and his wife Barbara.
    As a person living with a disability and hearing about what is happening to disabled and elderly nursing home residents, I am very concerned. During the Coronavirus outbreak we have witnessed thousands of deaths across the United States. In many states nursing homes are not regulated and do not have any oversight from the state or federal government. In Many states Coronavirus cases in Congregate Care settings are being hidden and covered up. Physical and emotional abuse is rampant throughout these facilities and disabled people of all ages are often taken away from their families and forced into nursing homes where decisions are being made for them even though they are not supposed to. Families know what is best for their loved ones and how to care for them. We should not be made to go live in places we are unfamiliar with and have people we do not know. Thousands have perished in our nursing homes since the beginning of the pandemic and continue to die. I am very fearful of living in a nursing or group home after hearing numerous horror stories from people I know and news reports about the complete lack of care and incompetence in our nursing homes. There is no voice or no one to stand up for our civil rights once we are placed into long term care and we are often left to rot away in dirty and infested death traps known as nursing homes.
    I am proposing people be giving what they need to live at home where they have a right to be and an end to Congregate Care and putting individuals and their families back in charge of our healthcare.
    I am 28 years old living with Cerebral Palsy in Houston, Texas. Living at home is important to me because it shows inclusion and equality with everyone else within the community. I enjoy going out in public and making new friends by attending sporting events as well as attending political meetings and being an advocate for public transportation improvements in my city. Having my own foundation raising money for TIRR Memorial Hermann a local rehabilitation in the city of Houston through many different fundraisers throughout the year I have to be able to live at home in order to plan and prepare for events while continuously engaging with my supporters and peers. I also advocate to have our city streets and sidewalks to undergo much needed repairs, so they are more passable and safer for those with mobility aids such as wheelchairs, scooters, and walkers. Being at home with my family and seeing my friends keeps me happy and in good spirits. My family loves me, and I love them very much. I am forever grateful, and I do not know what I would do if I did not see them every day or how I would feel. My family and my home are the only way of life I have ever known. I would be very upset if I did not have them in my life anymore. I have only been able to live an active and productive life due to the Home And Community Based services I currently receive. Caregivers deserve raises, benefits, and paid leave. Without my caregiver I don’t know what I would do or what my life would be like.

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