Below find some of the most memorable and impactful stories of the past decade.
NIH Launches First National Down syndrome Registry
In 2013, The National Institutes of Health has launched DS-Connect, a Web-based health registry that will serve as a national health resource for people with Down syndrome and their families, researchers, and health care providers. Participation in the registry is free and voluntary. If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan. It can be found at: https://dsconnect.nih.gov/.
Seclusion and Restraint
On Monday, February 4, 2013, an 8 year old girl with Down syndrome came home from school with her legs duct-taped as a form of disciplinary action. It left many families that have a loved one with Down syndrome or special needs wondering how this could still be happening… http://www.usatoday.com/story/news/nation/2013/02/05/duct-tape-special-needs-girl/1894777/.
Later that year, The Indiana General Assembly passed SB 345, which established the Indiana Commission on Seclusion and Restraint in Schools, required the commission to develop a statewide Model Seclusion and Restraint Plan, and required the state to adopt rules to minimize or eliminate the use of seclusion and restraints in schools. Under the law, all school corporations in Indiana, including accredited non-public schools, must have had a plan on the use of seclusion and restraint in place by July 1, 2014.
DSI Hosts NDSC Convention
From July 11th through the 13th 3,300 guests gathered at the 2014 National Down Syndrome Congress Convention hosted by Down Syndrome Indiana. The convention brought in world renowned speakers and world class opportunities for families to connect. Indy’s own, Dr. Marilyn Bull was awarded the Pueschel-Tjossem Memorial Research Award, Sure Steps Founder, Bernie Veldman was awarded the Exceptional Meritorious Service Award and Down Syndrome Indiana received the Convention Service Award. Several local DSI Self Advocates including: Angie Cain, Jessica Green, Tommy Sliva, Connor Stoesz, and Sarah Strohl were invited to present in front of a national audience!
In 2014, following overwhelming passage in the House of Representatives (404-17), the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) passed the US Senate as part of the Tax Extenders Package. The ABLE Act was the most bipartisan, bicameral bill before the 113th Congress. This past December marked the 5-year anniversary of the passage of the ABLE Act.
Prior to the passage of the ABLE Act, very few savings mechanisms existed that allowed people with disabilities who depended on public benefits to save more than $2,000 in assets. ABLE has been transformative in providing people with disabilities and their families with a financial tool to achieve greater financial independence and self-reliance while maintaining their public benefits. Indiana’s ABLE program is known as INvestABLE. More information about it is available here: https://savewithable.com/in/home.html.
Born This Way
In 2015, A&E Networks announced it would be airing “Born This Way,” a new six-episode documentary series about young adults with Down syndrome. http://www.aetv.com/shows/born-this-way.
Erskine Green Training Institute
In 2015, The Arc of Indiana, a statewide advocacy organization for people with disabilities, strives to empower people and inspire change in many ways – including expanding employment opportunities to tackle the 82% unemployment rate among people with disabilities. They not only advocate for change, they are working to be part of that change by developing the Erskine Green Training Institute through The Arc of Indiana Foundation. Find out more at: http://www.erskinegreeninstitute.org/about-us/about-the-erskine-green-training-institute/.
House Bill 1093
In 2015, House Bill 1093 became law stating that, “When a positive result from a test for Down syndrome or any other condition diagnosed prenatally is received, a health care facility or health care provider shall provide to the expectant parent of the child diagnosed with Down syndrome or any other condition diagnosed prenatally the written information made available by the state department…”. “This is a huge step in the right direction. I have long been concerned with the number of families that haven’t received any information about Down syndrome at all or have received outdated information.” said DSI Executive Director Lisa Wells.
“Where Hope Grows” in movie theatres nationally
In 2015, “Where Hope Grows” opened nationally on Friday, May 15th 2015. The movie (formerly known as “Produce”) follows the story of Calvin, a professional baseball player sent to early retirement due to his panic attacks at the plate. He struggles with the curveball life has thrown him but is invigorated when he meets a young man with Down syndrome (DeSanctis) that works at the local grocery store. Their lives become intertwined, and as their friendship develops, Calvin begins to see the world through Produce’s eyes and improve his own outlook on life.
Law Eliminates R Word from Indiana Code
On July 24th, 2015, then Governor of Indiana, Mike Pence signed SB 420 into Law. The new law replaces the term, “mental retardation” with the words, “intellectual disability” in Indiana code. An article by WISH TV covered the signing: http://wishtv.com/2015/07/24/new-law-eliminates-r-word-from-indiana-code/.
Peanut Butter Falcon
In 2019, Michelle Sie Whitten and Global Down Syndrome Foundation are Executive Producers of the film The Peanut Butter Falcon. It was so popular that it was named the Top Independent film in 2019 by National Board of Review. And with all those viewers it still is at a 95% rating on Rotten Tomatoes. In addition, Zack Gottsagen and Shia LaBeouf are getting Oscar Buzz for best supporting actor and best actor. This is the FIRST time an actor with Down syndrome is a possible contender for this prestigious award! The trailer for this movie can be found at: https://www.imdb.com/videoplayer/vi3679239193?playlistId=tt4364194&ref_=tt_ov_vi
The Today Show features Dads Appreciating Down syndrome
In November of 2019, the Today Show featured Dads Appreciating Down Syndrome (D.A.D.S.). It is quite an accomplishment for such a small organization to have one of its programs featured in the national spotlight! https://www.today.com/video/these-dads-unite-to-showcase-their-kids-with-down-syndrome-73611333947.