Author: Deb Safarik, President, Down Syndrome Advocates in Action Nebraska

The Enable Savings Plan is thrilled to celebrate the amazing organizations making a difference in our community. For this blog, we reached out to Deb Safarik, the President of Down Syndrome Advocates in Action Nebraska (DSAA) to highlight the work that they are doing to support individuals with Down syndrome in Nebraska.  

What is your organization’s mission?

Our mission is to advocate for the value, acceptance and inclusion of individuals with Down syndrome. Our vision is to work toward creating a society in which people with Down syndrome are welcomed as valued members of the community.

How does Down Syndrome Advocates in Action Nebraska work to improve the lives of individuals with disabilities?

We work to improve the lives of individuals with disabilities but also to create positive experiences for families & raise awareness in our community. We were to have our 5th Annual Buddy Walk in March, taking place the weekend before World Down Syndrome Day. Of course, it had to be postponed, but we've had many positive results with the opportunity for individuals and families to walk indoors at the mall with everyone else. We also host community events, such as a Game & Ball Night, a Christmas Party, Parent Coffees, Family Picnic Potlucks, a Valentine’s Day Dance, and collaborations with other disability organizations, including Husker Heroes, a sports event at Memorial Stadium hosted by O.N.E. Coalition.

DSAA provides resources to any parent who receives a prenatal or postnatal diagnosis of Down syndrome. We also have resources for grandparents. We're growing our Family Connections Webinar, a more private Facebook group with topics of interest to our families.

We are very happy to now have Kearney NE Down Syndrome group as a community partner with the DSAA, serving the eastern end of the state. We've always had a desire to reach out across the state to provide information and support to any family in Nebraska no matter where they live. In addition, we have great links on our website to national and local groups.

What is the most rewarding part of being involved with DSAA? 

It's most rewarding when we feel we have helped a parent feel more confident in advocating for their child, whether that be in regards to their Individualized Education Program (IEP), with their child's school, or in talking to their physician. Two members of our board have completed Inclusive Education Lay Advocacy Training so that our organization can provide support to parents who ask for help in communication with their child’s school about their needs. We tell parents they are the specialists and know their child the very best. We want self-advocates to feel more confident telling others what they need and to express their desires.

Have members within your organization been impacted by the Enable Savings Plan?If so, how so? 

We have information about the Enable Savings Plan available at some of our meetings. My son Paul has an Enable account and primarily uses it as a savings account right now so the money he saves does not impact his $2000 limit for Medicare.

Do you have any uplifting stories or interactions with the individuals DSAA supports?

After attending our community Game & Ball Night event, one young sibling of a girl with Down syndrome said, "I just love Down syndrome! I get to play basketball, and decorate pumpkins, and eat pizza!" I thought this was such a positive way for him to think of Down syndrome.

My son once said, “I wish I didn't have Down syndrome." My first thought was, "Oh dear what happened?" But instead I said, "Well you know if you didn't have Down syndrome you wouldn't get to do a lot of things, like Game & Ball Night, going to a picnic and swimming, going to the Buddy Walk, or having your picture on a poster!” Being a part of DSAA can change your perspective on Down syndrome, by offering so many fun things to do with our group.

Do you have any upcoming events or initiatives you’d like to let people know about?

We still plan to reschedule our Buddy Walk when it is safe. Any parent meetings or in-person social events are currently on hold. We have been holding an Afternoon Club Zoom Meeting on Mondays, Wednesdays and Fridays. Monday is "Ladies only," Wednesday is "Just the Guys," and Friday is "Everyone." We've just had a social time, tried karaoke, played hangman, and played "Truth & Lie." People can be involved with the DSAA by connecting with us on Facebook, going to our website or joining our mailing list.