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On my personal Instagram Page, I recently shared a bit about getting involved in Advocacy. It’s not as scary as it seems!  Most days, I’m happy to consider educating others about Down syndrome in the grocery store, or in our local schools, or tweeting about issues relating to disability, as “Advocacy”. But at times, larger topics call for larger measures. The Buddy Walk on Washington (where our family is headed for next week) is one of those times. Families and advocates from across the county will gather in Washington DC for a day on the Hill. A chance to meet face-to-face with elected officials, and let them know the issues that are top on our list. This year, those issues will include proposed improvements to ABLE accounts, the DS Congressional Task Force, and Education issues. 

Advocate for Down Syndrome rights and inclusion and events for Down Syndrome

If you’re like I was at the beginning of our journey with Down Syndrome/Disability, getting involved in the political arena can be a bit intimidating. The easiest way to start though, is at the beginning. Find out who your legislators are by visiting the National Down Syndrome Society website and head to the Advocacy Alert page.  It’s easy to plug in your zip code, and let NDSS do the rest. In a second, you’ll have a list of local, state and national representatives. 

Next, take a couple minutes to familiarize yourself with the issues. On that same web page, NDSS lists, in chronological order, their most recent action alerts – topics that are important in particular to the Ds community. 

Then, write up a profile on your child and your family. What issues do you have to face daily?  What’s life like for you and for your child? What can they help with to make the road a bit smoother? Include a photo or two. If you get a chance, visit them in their home office during legislative breaks. Establish relationships (don’t forget those staffers too!). 

Advocating for himself

After you get your feet wet, you’ll find it’s not as difficult as you imagined. You might even be interested enough to sign up for your state’s Partners in Policy-making class, a six-month training on almost every disability topic there is! I’m a 2015 Florida PIP grad, and still have contact with my classmates today. 

Bottom-line is that parenting a child with a disability can sometimes require you to step out of your comfort zone, to do the best for your child. If you take some time to educate yourself and prepare, that first step won’t be quite so intimidating after all. 



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