Volume 5, Number 1, February 2019 Governor’s Council on Disability GCD: Governor’s Council on Disability Governor's Council on Disability logo Inside this Issue Page 1: . GCD Update . March is CP Awareness Month Page 2: . Missouri Youth Leadership Forum Update . Disability Rights Legislative Day Page 3: . GCD offering Legislative Education Project . Meet Council Member James Trout Page 4: . Upcoming Events GCD Update by Claudia Browner The year 2019 has already been very exciting for the Governor’s Council on Disability (GCD). GCD is involved in several committees and workgroups that promote full inclusion of individuals with disabilities. Some of those include: Emergency Management, Preparedness and Response, First Responder Disability Awareness Training (FRDAT), and the Missouri Policy Summit on Post-Secondary Education for students with I/DD. Just last week, Governor Parson announced Missouri’s selection for a technical assistance program aimed at expanding employment and training opportunities, and making Missouri a Model Employer for individuals with disabilities. The Governor’s Council on Disability is very excited to participate in this initiative. Over the next several months, representatives from the Governor’s Office and partnering state agencies, along with Paraquad and the Missouri Chamber of Commerce will work on improving employment opportunities. The full news release can be found online at https://governor.mo.gov/press-releases/archive/missouri-track-become-model-employer March is Cerebral Palsy Awareness Month by Rachel Rackers photos of Rachel Rackers and her brother Greg as children and adults February and March are full of opportunities to help bring awareness to many different health and disability topics. All of the topics are equally as important as the next, but one is closest to my heart—Cerebral Palsy (CP). Growing up with a brother who has CP, helped shape me and choose my career path. But, it also made me want to educate others about CP and other disabilities. March is Cerebral Palsy Awareness Month and the 25th of March is Cerebral Palsy Awareness Day. Green is the color for cerebral palsy awareness, so you should wear green on more than just St. Patrick’s Day! There are about 17 million people who have Cerebral Palsy, and around 350 million people are connected to someone with CP. It is the most common childhood disability, and 1 in every 500 babies are diagnosed with CP. Cerebral Palsy doesn’t fit into a one-size-fits-all box. There are several types of cerebral palsy, with many variations. No two people with the disability will have it in the exact same way. There are four types of CP: Spastic, Dyskinetic, Ataxic and Mixed. Cerebral Palsy is unique, and may have certain complications that differ in each case. It can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture, balance, fine motor skills, gross motor skills and oral motor functioning. A common mishap for individuals with CP, is that they are treated as if they have an intellectual disability when in reality, most people who have the condition have normal to above-average intelligence. So what can you do for Cerebral Palsy Awareness Month? You can educate yourself and others about it. Everyone who has CP is affected so differently by it, which tends to create many rumors and misunderstandings. If you hear something that is stated wrong, politely correct the person with factual information. Lastly, I challenge you to get to know someone who has CP or any other disability. Below are links for information regarding the other upcoming awareness events. Check them out! Awareness Events in February AMD/ Low Vision Awareness Month - http://www.lifecarefunding.com/blog/warning-signs-of-vision-problems-amdlow-vision-awareness-month/ Kids ENT Health Month - https://wondermomwannabe.com/ent-health/ Marfan Awareness Month - https://www.marfan.org/about-us/news/2018/01/29/knowfightwin-marfan-awareness-month#.XD4WQLmovIU Feeding Tube Awareness Week (Feb. 4-8) - https://www.feedingtubeawarenessweek.org/ Congenital Heart Defect Awareness Week (Feb. 7-14) - https://www.cdc.gov/mmwr/volumes/66/wr/mm6604a7.htm Duchenne Muscular Dystrophy Awareness Week (Feb. 13—19) - https://www.parentprojectmd.org/ Donor Day - https://www.organdonor.gov/index.html and Congenital Heart Defect Awareness Day (Feb. 14) - http://www.chdinfo.com/chdaware.php International Angelman Day (Feb. 15) - https://angelmanday.com/ Rare Disease Awareness Day (Feb. 28) - https://www.rarediseaseday.org/ Awareness Events in March Brain Injury Awareness Month - https://www.biausa.org/public-affairs/public-awareness/campaigns/fact-sheet Developmental Disabilities Awareness Month - https://nacdd.org/ddam/ Hemophilia Month - https://www.cdc.gov/features/red-tie-challenge/index.html Kidney Month - https://www.worldkidneyday.org/2019-campaign/2019-wkd-theme/ Trisomy Awareness Month - https://www.therapycenterofbuda.com/family-corner-blog/national-trisomy-awareness-month-what-is-trisomy Spread the Word to End the Word Day (March 7) - https://www.r-word.org/r-word-take-action.aspx#.XD0FQPlKjIV World Kidney Day (March 14) - https://www.worldkidneyday.org/ World Down Syndrome Day (March 21) - https://www.worlddownsyndromeday2.org/ Purple Day for Epilepsy Awareness (March 26) - http://www.purpleday.org/ Page 2 Missouri Youth Leadership Forum Update by Rachel Rackers Photo: Reminder about Missouri Youth Leadership Forum with group photo of 2018 participants and link to website https://disability.mo.gov/gcd/ylf.htm Rohan Murphy, a nationally recognized youth speaker, is this year’s Missouri Youth Leadership Forum (MO-YLF) keynote speaker and is scheduled to speak to the delegates and alumni on Tuesday, July 16th. Rohan’s story is inspiring and encourages others to achieve their goals, no matter what obstacles they may face. We look forward to having Rohan kick off our week that will be filled with various activities and opportunities for growth! As a reminder, the dates for 2019 MO-YLF are July 16-20th and the event is held at the University of Missouri in Columbia, MO. While at MO-YLF, the delegates will gain skills, knowledge, self-confidence, and much more. It is important for the delegates to be able to apply these skills once they are back home from the forum. This year, we are adding a session on the last day for parents/guardians. During this session, we cover a variety of topics that will be helpful for parents as they support their transition-aged youth. Along with the addition of adding a parent session, we will also be incorporating several new topics throughout the week. Some of those topics are different parts of independent living (IL), history of IL, and also relationships. Applications for delegates and volunteer staff are still being accepted and available on our website at http://disability.mo.gov/gcd/ylf.htm. The deadline for delegate applications is March 31, 2019. If you know of a student with disabilities who has leadership potential, please share the information about this exciting program with them. GCD is looking for applicants from all areas of the state. MO-YLF is free of cost to the students who are selected. This is all made possible because of donations and sponsorships. If you or your organization would like to help us make this great program possible, please contact GCD for more information. For questions, please contact the Governor’s Council on Disability at (800) 877-8249 or (573) 751-2600. Disability Rights Legislative Day by Claudia Browner Photo: Save the Date flyer for the 18th Annual Disability Rights Legislative Day at the Missouri State Capitol, First Floor Rotunda Wednesday, March 13, 11 AM to 2 PM The 18th Annual Disability Rights Legislative Day has been scheduled for Wednesday, March 13, 2019 in Jefferson City. The rally is hosted by the Missouri Developmental Disabilities Council and is attended by individuals with disabilities, advocates and disability organizations to meet with legislators and bring attention to disability-related topics. The event is held from 11 a.m. to 2 p.m. in the First Floor Rotunda of the Missouri State Capitol. For the agenda and detailed information, please visit the DD Council’s website at http://www.moddcouncil.org/?page_id=whatsnewstory&id=34 Page 3 GCD offering Legislative Education Project by Laura Mueth Photo of Missouri State Capitol with a reminder about Legislative Education Project Contact 573-751-2600 for more information or visit https://disability.mo.gov/gcd/LEP.htm Do you have a group of 10 or more individuals who would like to learn about the legislative process, how to communicate with legislators, and other relevant topics? The Legislative Education Project might be an option. The Governor’s Council on Disability’s offerings include: . Online videos and modules . A presentation in your community, and . A day at the Capitol building in Jefferson City. Visit https://disability.mo.gov/gcd/LEP.htm to learn more. Groups from Kansas City, Springfield, St. Joseph, and St. Louis have already contacted our office. Yours could be next. Meet Council Member James Trout by Claudia Browner Photo: Council member James Trout James Trout was appointed to the Governor’s Council on Disability in 2009. In 2011, he was elected Acting Chair of the Council and served in that capacity until 2015. To date, he continues to serve as a Council member. James raised two sons in Webster Groves, the eldest having Williams Syndrome. “Having a son with a disability didn’t make me an expert on anything other than patience with a sense of humor, but it did give me a real appreciation for a large segment of the population that interacts with our world differently than I did.” James also served as chair of the Council’s Advocacy Committee and Programs Committee and took a real interest in two specific Council Goals when he joined the GCD: Encourage system changes and public policies that eliminate barriers, and expand opportunities for independence. James lead two initiatives while serving as Acting Chair. The first was to develop a Council policy statement on Indoor Air Quality. The intent was to better inform and protect those with chemical sensitivities. The result, though, helps everyone stay alert to the indoor environmental toxins that cause disease and disability. The second initative was to establish uniform accessibility standards for housing built using state incentives. The Universal Design (UD) Coalition convinced the Missouri Workforce Housing Association and the Missouri Housing Development Commission to adopt UD standards for all housing built using Missouri tax credits, now incorporated in state standards. Mr. Trout’s background includes 30 years as a Designer/Builder and the last decade as an industry expert in energy efficiency and indoor environmentals. Mr. Trout served on several boards and committees, such as the Parent Leadership Institute, Building Performance Institute, Green Builders Council (HBA), and Missouri Association of Realtors, just to name a few. Page 4 Upcoming Events . March 1, 2019 Reverse Job Fair, State Fair Community College, Osage Beach . March 8, 2019 Lake Area Transition Network, Osage Beach - https://www.eventbrite.com/e/lake-area-transition-fair-tickets-52265860596 . March 13, 2019 Disability Rights Legislative Day, State Capitol, Jefferson City - http://moddcouncil.org/?page_id=whatsnewstory&id=34 . March 15-22, 2019 Legislative Spring Break . April 1-2, 2019 Power Up Assistive Technology Conference & Expo, Columbia - https://at.mo.gov/power-up-conference/ . May 17, 2019 Last day of Missouri Legislative Session . June 16-19, 2019 National ADA Symposium, Grapevine, Texas - http://www.adasymposium.org/ . June 17 –20, 2019 Transition Training Institute, Columbia - https://dese.mo.gov/sites/default/files/SAVETHEDATE_2019TTIflyer.pdf . June 18-20, 2019 National APSE Employment Conference, St. Louis - https://apse.org/learn-live-online/2019-national-conference/ . July 16-20, 2019 Missouri Youth Leadership Forum, MU Campus, Columbia - http://disability.mo.gov/gcd/ylf.htm Missouri Governor’s Council on Disability Members . Yvonne Wright, Chair, New Bloomfield . Joan Bergstrom, Ed. D, Lee’s Summit . Charles Comstock, Kirksville . Betty Davidson, Ph.D., St. Louis . Ronald Hack, St. Louis . Chip Hailey, Joplin . Mary Ann Harter, St. Louis . Rosemary Hendon, West Plains . Katie Jones, St. Charles . Elijah Mayfield, Jefferson City . Todd Mayfield, Jefferson City . DeAnna Noriega, Columbia . Susan Orton, Creve Coeur . Opeoluwa Sotonwa, Jefferson City . James Trout, St. Louis . Robert Wallace, St. Louis Missouri Governor’s Council on Disability Staff Members . Christina Brazell, Administrative Office Support Assistant . Claudia Browner, Executive Director . Laura Mueth, Disability Program Specialist . Rachel Rackers, Disability Program Specialist