Letter from Self-Advocate Paula Mass

Paula (on the right) with her friend Suzie in Washington DC for 2017 NDSS Buddy Walk

March 14th is Disability Rights Legislative Day. It is a day to advocate for equal rights to individuals of all abilities, and gives individuals with developmental disabilities the opportunity to voice their needs and wants. Paula, one of our self-advocates, wrote a letter about how she has found her voice while interning with DSAGSL for more than five years. We hope her inspiring words encourage others to be confident in advocating for themselves!

“My name is Paula Mass and I have been a DSAGSL office intern since 2013. Since coming to work here as an intern, I have learned to be a better self-advocate.  I went to the state Capitol last year to be an advocate and to Washington D.C. I am also now on the DSA Board of Directors!

I work at the DSA Office on Mondays. I am usually there from 9:00-4:45.  I do many things when I am at the office. I help with the mailings that go out, I get the mail when it comes in and pass it out, I work on the birthday cards that go to all of the members, and any other things that I am asked to do. I like being an intern at the DSA.  I remember when I was asked to be an intern at the office. I was more than thrilled to become a part of the DSA team.
This job has helped me to be a better self-advocate. I did not know what a self-advocate was at first. I was sort of stuck in my own ways before, but I had to move past that. The more I learned about how to talk to people who came into the office, even though I was scared, it helped turn my attitude around. It wasn’t easy at first, but everyone at the office was patient with me. I guess I was shy.
Later, I was asked to be on the Board of Directors for the DSAGSL. My father talked to me about having a spot of the board as a self-advocate and he told me what that would mean. That meant that I would have to speak up even more. I was scared again, but I gave it a try.
I speak up more now than I ever did. I speak up about things that are important to me. I also speak up about things that are Down syndrome. I speak up for my friends and family if I need to. I am a self-advocate and I am proud of it. Just think, this all came from becoming an intern here at the Down Syndrome Association Office.”

Paula (front center in purple) with group in Jefferson City, MO for Disability Rights Legislative Day 2017

From the Board: Greg Szczepan

Today’s post is an introduction from new DSAGSL board president Greg Szczepan. Greg is a long-time member of the DSAGSL family, but here are a few of his own words on his experience!

“Hi everyone, my name is Greg Szczepan (pronounced ZEPAN), and I am excited to be your new board president for the DSAGSL.  I first became aware of the DSAGSL when my wife Kim gave birth to our son, Jacob, who was born with Down syndrome back in 2000.

The DSAGSL sent over a welcome basket when Jacob was born which provided so much educational material about Down syndrome, and support that made us feel like we were not alone.

We also have two older children, Laura and Nick.  Over the years, we have participated in many events supporting the DSAGSL, like SUDS, trivia night and golf just to name a few, but I thought I needed to do more so I became a board member working on the finance committee back in 2015.

A few of my hobbies include following the St. Louis Cardinals, playing golf and just hanging out with my family.  I hope to meet all of you at an upcoming DSAGSL event, so please SIGN UP TODAY!”

A huge thanks to Greg for sharing his story!

5 Ways to Raise Awareness for World Down Syndrome Day!

World Down Syndrome Day is on March 21, less than a month away. To get you in the spirit of celebrating, here are some fun ideas to educate others about this special day!

  1. Wear fun socks!

The WDSD website suggests wearing brightly colored socks, along with t-shirts and other colored clothing. Crazy colored socks can attract attention and questions, and when they do, be ready to tell people all about WDSD!

  1. Have a Pop-Up Snack Shop day at your job

It’s the food truck without the truck! If you want yummy snacks to get you through the day at work, our snack shop can set up a stand to feed you and your co-workers. You’ll also have the opportunity to chat with the awesome staff, made up of individuals with Down syndrome. You can find more information about the Pop-Up Snack Shop here!

  1. Share cool photos and quotes about Down syndrome

Use the power of social media for a good cause by posting a fun meme or photo on your newsfeed. It can be 21 fun facts about Down syndrome, or a quote about how awesome individuals with Down syndrome are! Check out this Pinterest page for ideas!

  1. Run a 21K

Get some exercise and support the Down syndrome community by participating in a 21K! If you’re not a half-marathon runner, no worries…there will also be a 7K run and and 2.1K walk! The 7th Annual Relay and Run for 21 will be on Sunday, March 25, 2018. Check out the Relay and Run website for more details!

  1. Volunteer

One of the best things you can do to show your support is by volunteering your time. Whether it’s one hour, one day, or one week out of a month, every little bit helps! Look here for more information on volunteer opportunities with the DSAGSL!

 

Valentine’s Day Feature: Dollar Dance for DSA!

In honor of Valentine’s Day, we are featuring a story from an awesome couple! For many couples, their wedding day is one of the most important events of their lives. Family and friends from everywhere gather together to celebrate the occasion, and shower the newlyweds with gifts.

Kimberly and Neil Sanders did things differently and gave a gift to others on their wedding day in November 2017. The couple held a “dollar dance,” where guests donated a dollar to dance with the Bride or Groom. They raised $400, and the money was donated to the Down Syndrome Association!

The dollar dance was an effort to support participants of DSA’s Ready 2 Work program, including Kimberly’s cousin Aaron,who has Down syndrome. Kimberly posted on her Facebook page about the fundraising: 

“FOUR HUNDRED DOLLARS is how much our amazing friends and family donated to the Ready 2 Work program with the Down Syndrome Association of Greater St. Louis at our wedding! Thank you to all who donated to help my best bud and his friends find meaningful jobs in the St. Louis Area. It means so much to us! If anyone would like more information on how to hire these awesome self-advocates please let me know!”

We would like to thank this amazing couple for their contribution to DSA, and wish them a happy first Valentine’s Day as newlyweds!

 

 

 

 

 

Here’s How You Can Support House Bill 1658!

HOUSE BILL 1658- February 6th, 2018

On Tuesday, DSAGSL Executive Directer Erin Suelmann, traveled to Jefferson City with Advocacy Committee member and parent, Pat Alster, to testify in support of House Bill No. 1658, introduced by Rep. Chuck Basye.

If passed, this bill will expand insurance coverage for vital therapies to any child with a physical or developmental disability in Missouri. Health insurance providers would not be able to deny coverage for therapies designated necessary by a health provider. These therapies will include, but are not limited to, therapeutic care, habilitative or rehabilitative care, and applied behavior analysis. You can read the entire bill and track its progress on the Missouri House Website.

Erin stated, “This would be a huge win for the Down syndrome community. All of our children benefit from early intervention and therapies throughout their early years, but many can not access the number of hours that is necessary due to lack of insurance coverage and high costs. The expansion of coverage for speech and behavioral therapies would be a game changer for our community.”

Other issues we are currently tracking involve changes to guardianship, inclusive employment, and of course, the Missouri state budget.

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The DSAGSL is expanding our legislative advocacy efforts, and would love to have you involved.  To join our monthly Advocacy Committee call, contact Erin@dsagsl.org 

If you are a Self-Advocate that would like to learn more about current legislation and advocacy, there will be an Steps to Independence Advocacy Class on Tuesday, March 6th from 9am-1pm at the DSAGSL office. Lunch is provided! 

You are also welcome to join us in Jefferson City on March 13th for Disability Rights Legislative Day!

Please e-mail Andi@dsagsl.org if you’d like to RSVP for the class, and/or if you’d like to go attend Disability Rights Legislative Day in Jefferson City, MO.

 

 

 

 

WELCOME SPRING 2018 INTERNS!

We are excited to welcome our new interns this semester! Here’s a little more information about the ladies:

 

Lexie

My name is Lexie Smith and I am a senior at UMSL. I’m graduating this December with a Bachelor’s degree in Communication. I joined the DSAGSL family because it aligns with a lot of my core values. Being able to undertake work that you know gives back to the community is something to be proud of everyday. I plan on taking the skills I learn here to hopefully keep working in non-profit organizations after I graduate.

Fun fact: When I’m not in school, my internship, or working at my aunt’s bridal boutique, I enjoy reading, going to the gym, and watching Netflix!

 

Quinisha

Hi, my name is Quinisha Jackson-Wright, and I am a senior at UMSL with a major in Communication. I graduate in May 2018 (so excited!). I chose to join DSAGSL because I enjoy doing work that has a purpose, and I love meeting people from all backgrounds. After graduating, I would like to continue working in social media and communications in the non-profit sector.

 

Mallory

My name is Mallory Mason, I am a student enrolled at St. Louis Community College Meramec, and my major is Social Work. I decided to intern with DSAGSL because I currently nanny an 8 year old who has autism, and I want to work with individuals with disabilities as well as their families. Interning with DSAGSL will give me more knowledge and experience to support families, and individuals with Down syndrome.

 

Zoë

My name is Zoë Wallis and I attend the University of Missouri-St. Louis. I am a senior, majoring in Communication with a minor in Gender Studies. I chose DSAGSL because I am passionate about social justice and equality. Every single person in this world has something to offer and I am here to help ensure everyone’s voices are heard!

 

Celebrate Down Syndrome Awareness Month with the DSAGSL

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The Down Syndrome Association of Greater St. Louis wants you to join our celebration!

Individuals with Down syndrome and the many wonderful gifts they bring into the world are a big cause for celebration. During Down Syndrome Awareness Month we get to dedicate the whole month of October to fully shining a light on those individuals. We will celebrate the abilities of those with Down syndrome through spreading awareness, and promoting advocacy and inclusion throughout the community.

For those of us who know and love an individual with Down syndrome, we get the chance to celebrate them and be an advocate for them every day. But, throughout October we have the opportunity to extend the celebration and advocacy of Down syndrome to others by promoting awareness and helping them to see the amazing abilities those with Down syndrome possess. By celebrating abilities, rather than disabilities, we can foster inclusion, understanding, and opportunities for individuals with Down syndrome.

We strive to be a constant advocate and promote advocacy and awareness of those with Down syndrome and in October we step up our efforts to increase this awareness. Throughout October, we ask that you join us in this opportunity to really make others aware of the wonderful abilities those with Down syndrome have and the amazing accomplishments they achieve. Visit our Down Syndrome Awareness Month webpage or www.Facebook.com/dsagsl to find out how you can celebrate abilities this October.

Down Syndrome Awareness Month – an October Celebration

The Down Syndrome Association of Greater St. Louis wants you to join our celebration!

Individuals with Down syndrome and the many wonderful gifts they bring into the world are a big cause for celebration. During Down Syndrome Awareness Month we get to dedicate the whole month of October to fully shining a light on those individuals. We will celebrate the abilities of those with Down syndrome through spreading awareness, and promoting advocacy and inclusion throughout the community.

For those of us who know and love an individual with Down syndrome, we get the chance to celebrate them and be an advocate for them every day. But, throughout October we have the opportunity to extend the celebration and advocacy of Down syndrome to others by promoting awareness and helping them to see the amazing abilities those with Down syndrome possess. By celebrating abilities, rather than disabilities, we can foster inclusion, understanding, and opportunities for individuals with Down syndrome.

We strive to be a constant advocate and promote advocacy and awareness of those with Down syndrome and in October we step up our efforts to increase this awareness. Throughout October, we ask that you join us in this opportunity to really make others aware of the wonderful abilities those with Down syndrome have and the amazing accomplishments they achieve. Visit our Down Syndrome Awareness Month webpage or www.Facebook.com/dsagsl to find out how you can celebrate abilities this October.