Late last fall, Deb and Angie realized that after a year of not being involved with the leadership of a local Down syndrome association that our strengths and abilities were not being fully utilized. We missed helping families and individuals with Down syndrome and being part of the planning and decision making process. When brainstorming about what type of group would really meet the needs of the Down syndrome community, the words advocates & action kept coming up.
We decided we want to be part of:
- A group where individuals with Down syndrome are encouraged to be self-advocates
- A group where families feel supported when advocating for their younger children who are still in school or about to start school
- A group that acts on ideas and gets projects done in a timely manner
- A group that regularly engages community members and keeps them up-to-date on happenings in local, regional and national Down syndrome community
- A group that makes decisions about the programming, events they offer based on input from families and individuals with Down syndrome
- A group that is an active advocate in local and state government
- A group that works together with other support groups who serve the local disability community to achieve common goals
- A group that welcomes individuals with Down syndrome of any age
Right now Down Syndrome Advocates in Action Nebraska is a grassroots effort, led by people with a passion to help, some experience under our belt, a mission statement to guide us, and a history of getting things done. While we have only been at this a short time, we already have some exciting news to report. Recently LB891 Adopt the Down Syndrome Diagnosis Information and Support Act was introduced by Sen. Lydia Brasch. If passed, this bill will help ensure that any family who receives a new diagnosis of Down syndrome in the state of Nebraska will be given up-to-date, accurate and non-biased information about Trisomy 21. We have been working with other leaders from the Down syndrome community in Nebraska and Tom Venzor from the Nebraska Catholic Conference to help support this legislation. Fourteen other states have already passed similar laws. We want to thank Sen. Brausch, and the 44 other Senators who are co-sponsors on this bill. Currently the bill is with the Health and Human Services committee.
If you would like to help advocate on behalf of this bill, you can contact your senator (a phone call or email would be just fine) and let them know what this bill means to you. An email or phone call to Sen Brasch to thank her for her efforts would also be appreciated. Here is a link to help you find your senator’s contact information. There is also a map on this website to help you locate your senator if needed. .http://www.nebraskalegislature.gov/senators/senator_list.php
The Health and Human Services Committee will be holding the public hearing regarding LB891, on February 11, 2016. We hope to pack the room with supporters. The exact time and location will be communicated as soon we have this information, via email, on our website and on our Facebook page. If you feel called to testify on behalf of the bill, please email firstname.lastname@example.org.
To become a member, sign up on our webstite to receive emails and information about our events. Please feel free to share website and/or our public facebook page Down Syndrome Advocates in Action Nebraska with anyone who might be interested in joining our group. DSAA Nebraska is not being created to replace participation in existing support groups, but rather to give families additional opportunities and support. We encourage members of the Down syndrome community in Nebraska to engage with all groups that offer them support.
We look forward to advocating with you in the future!
Deb Safarik and Angie Willey, Co-Founders
Down Syndrome Advocates in Action Nebraska, is a group for parents run by parents.