Super Dadvocates: Super Dads Making a Difference
Every great idea needs a “flash of genius”….. the spark that starts it all. The Able Act (or rather what would become the Able Act) began as an idea from our second Dadvocate, Rick. A chance meeting, coupled with men who happened to be determined individuals, put three men on a path that will benefit so many for years to come. Let’s meet (and learn about) Rick…
PSN: Please share with us briefly about your family.
RH: I live in Arlington, Va., with my wife, Elenor, and daughters Audrey and Brita. Audrey, 14, has Down syndrome and Brita is 9. I’m a writer and editor and Elenor runs a local environmental non-profit. Audrey is in her last year of middle school, where she sings in the chorus and plays taiko (Japanese drums). Brita goes to a Spanish immersion school and plays soccer, cello and takes dance.
PSN: Please tell us your story.
RH: My dad once ran group homes for people with intellectual disabilities so it seemed like fate that we had a child with Down syndrome. Her diagnosis led me to learn more about it and advocate for her. It started by substitute teaching in Arlington schools (in special ed classes) and then joining the local government board that oversees disability services. I also was on the board of The Arc of Northern Virginia.
I found a way to use writing for advocacy when I wrote a play, “Three Generations of Imbeciles,” inspired by the true story of the involuntary sterilization of people with disabilities imposed by the state of Virginia in the 1920s through 1970s. In my play, though, the characters overcome sterilization and find a way to become parents anyway, with a happy and triumphant ending. Maybe one of your readers is in the theatre and would like to stage it! (For more information, see http://rickhodges.weebly.com/three-generations-ofimbeciles. html)
PSN: Where were you when you came up with the idea for the ABLE ACT? How did you come up with the idea for the ABLE ACT?
RH: I came up with the idea that led to the ABLE Act when I went to a financial planning seminar at the Arlington County Library when Audrey was a toddler. I knew that kids with Down syndrome go to college sometimes, and even if Audrey didn’t, she would need me to save some money for whatever her needs turned out to be. It soon became clear to me in that seminar that the financial planners had lots of options for people with typical lives, but Audrey’s future didn’t quite fit. There were accounts for college, accounts for working and retiring—but no account for people with different expectations, or uncertain ones. I took the idea to the Down Syndrome Association of Northern Virginia, where Phil Pedlikin was chair of the government affairs committee at the time, and he ran with it. We later learned that other people had come up with the same idea before I did, so we knew we were on to something. We succeeded in moving the idea forward because of the grassroots strategy that Phil designed. It required patience, tenacity and work—something we’re used to going through anyway to get things for our kids. Above all, it was about Steve Beck’s work.
PSN: What are your hopes for the future?
RH: When I explain the potential of people with Down syndrome or other conditions, especially to new, scared parents, I like to cite some of the amazing people with DS I’ve met or heard of, for example: the guy who plays five musical instruments, or who owns his own restaurant, or the woman who swam the English Channel, or graduated from college, or had an acting career. Perhaps Audrey will be on that list someday, somehow. But, she’s already done plenty for me to brag about and she’s only 14!
PSN: What is one of the most important lessons you’ve learned during this advocating journey? How did you learn it?
RH: I’ve learned that people in the disability community, whether those with disabilities or their families and friends working to help them, are the tortoises to everyone else’s hares. Steve Beck was a great example. He had zero lobbying experience, but he jumped in, kept going, learned what he needed to learn and never gave up. It’s not much different from how the people we love with disabilities find success.
To read more about how the ABLE Act may benefit your child, go to The ABLE ACT of 2014 EXPLAINED! >>>
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