Super Dads Making A Difference
Stephen E. Beck, Jr.
It is said that some of the best solutions originate and come from the people; real people with great ideas. Stephen saw a way to make the world a better place and he acted upon it. He fought for, and championed, a way to help others. What he left behind will live forever. With the assistance of his widow, Catherine, we would like for you to meet a man whose work will benefit so many in our community.
PSN: Please tell us about yourself, your family and your child:
CB: Our daughter, Mariae Rose, is a typical teenager. She intends to go to college in the fall and graduate with a degree in nursing. Since the day Mariae Rose was born we have saved what we could to support this goal. In contrast, when our daughter, Natalie, was born we were advised not to create any type of savings in her name. Because Natalie has Down syndrome, she had been tied to a support system that forced individuals with disabilities into a life of poverty in order to remain eligible for federal and state assistance programs. If you were to ask Natalie, she would tell you that after graduation from Saint John Paul the Great High School she is going to college at George Mason University’s Life Program. Prior to this Act we could not save funds to help her achieve this goal. The ABLE Act (Achieving a Better Life Experience:ABLE) Act allows families to save for the education now widely available in post-secondary schools for individuals with disabilities. These programs will assist Natalie to obtain both the job and life skills she will need to be more self-sufficient. This Act is not going to solve all of the financial problems of the disability community, but it does provide a major step forward. It allows my family to save money to take care of Natalie, as we have saved money to take care of Mariae Rose.
PSN: Please tell us Stephen’s story ; what you would like the readers to know about him?
CB: Stephen was first and foremost a Father. Stephen was not a professional lobbyist. He was a Dad, happily volunteering and working hard to correct an injustice. He volunteered his time over the (almost) ten years it took to pass this Act. Steve did more than simply voice his opinion; he always framed things in a way that everyone could understand. He inspired others with a quiet confidence. He did not do this alone, but enlisted the help of other self-advocates and their families. He rallied the support of our country’s advocacy groups for individuals with disabilities; groups like Autism Speaks and the National Disability Institute.
PSN: What made him decide to work so diligently to ensure the Down syndrome community (and special needs community, in general) had this “opportunity/savings account” on a national level?
CB: Stephen loved his country. This bill was named after Stephen not only for the work that he did to secure its passage, but also as an acknowledgment of what one person can accomplish. It is symbolic of what our country stands for, and symbolizes how one person can make a difference. This is not so much the Stephen E. Beck, Jr. Act but a Father’s Act, named for a father who stood up for what he believed should happen in our country. Steve saw an inequity in the way that he could save for the future of his two daughters. He used the resources available to him as their father to make a change, and correct a disparity. If not for the gift of our two wonderful daughters, Stephen would never have realized the inequities in our ability to invest in the future of our two children.
PSN: Please share one thing that Stephen learned that has made a big difference in your life (as well as in his life)?
CB: Your time is your most valuable resource. Use it wisely.
PSN: How would you describe his legacy?
CB: Parents have the power to create a change. This is our family’s story. In the future, other fathers or mothers, will come to the Nation’s Capitol with a passion for fairness and the dream of making a better life for their loved ones. Capitol Hill listened to Stephen’s stories and took action. There are other families and self-advocates who have more stories to share. There is more legislation that must
be passed. The Stephen E. Beck Jr. ABLE Act is just the beginning of an effort to allow individuals with challenges to have the same chance to live as fruitful a life as all other citizens in the USA.
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Rick Hodges
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! >>> [1]
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Phil Pedlikin
Every group should have a “mastermind”. Phil happened to be that “guy”. He sensed that this idea could gain traction, and he set in motion a direction that would enable the working pieces and parts to achieve some momentum and get proper notice. Together, these three Dadvocates have truly made a difference…
PSN: Phil, please give us a brief snapshot about you, your family and your child.
PP: I am the proud father of Ethan,16, who has Down Syndrome. I have been married to Adrianne for 20 years and have two other children: Lena, 18, a freshman at Meredith College and Caleb,12. We have lived in Vienna, Va. (in the same house) for those 20 years. I am getting my Ph.D. in Disability Policy at George Mason University. I am Vice President of a small IT consulting firm focused on SuccessFactors implementations. I was president of the Down Syndrome Association of Virginia, treasurer of the Arc of Northern Virginia, and have served on several boards and committees related to disabilities in and around Fairfax County, Va.
PSN: Please tell us your story…what you would like the readers to know about you.
PP: I am just a regular guy who listened when Rick Hodges came forward with his idea. When my son was three, my wife told me the world would not be good enough for him and that I needed to go change it. I asked her if she understood what she was authorizing me to do because I don’t “half” anything, I would be “all in”. Since then, I have been working to help individuals with intellectual disabilities of all ages. I helped a great Down Syndrome Association Board of Northern Virginia build their organization into a prominent part of the community in the area. I also helped build the financial infrastructure of the Arc of Northern Virginia so it could expand its services and improve its organization. I have helped a wide range of families with school, financial and other issues. I am writing my dissertation about the closing of institutions for the intellectually disabled. I am always searching for the next way to do my part.
PSN: We heard that you were the “mastermind” behind getting the ABLE Act off the ground. What were some of the initial challenges and when did you feel you were gaining traction?
PP: When we started, many people in the disability community told us that the ABLE Act could not “go anywhere”. There was no “political possibility” for such a bill and that many would object to letting people who received Medicaid (and other benefits) have money. They said they would not join in the effort because it was doomed from the start. We were just a bunch of people who had limited political connections but a viable idea and strategy; we were not a central part of the political disability community. We knew, however, that we were on to something when the only real question that Rep. Ander Crenshaw’s staff (he was our first and primary sponsor in Congress) asked was “are you sure this doesn’t already exist?” He was stunned that such a “common-sense idea” hadn’t already been enacted by Congress. We moved quickly to get members of the Ways and Means Committee to join the bill and when we did, we were off and running. Between Rep. Crenshaw’s participation and then gaining cosponsors of the bill from all parts of the political spectrum (and all parts of the country), we knew we were gaining traction.
PSN: What is one of the most important lessons you’ve learned during this advocating journey? How did you learn it?
PP: That the system can work. We believed that our idea would transcend politics, and it did. The disability community traditionally went to a certain small set of congressional advocates for help. We decided, however, to go to a range of junior members of Congress, none of them in the congressional leadership, so we could build momentum and eliminate the possibility that we would get caught up in partisan bickering. As we started to approach members of Congress (from the most liberal to the most conservative), we had to adjust our message some, but we were highly successful at convincing members that this was just a good idea. We learned from doing, we learned from meetings and from approaching members from all over the political spectrum.
PSN: Do you have any other goals with regard to the special needs community?
PP: Unfortunately, we have too many goals. The range of housing options is not adequate, there are not nearly enough job opportunities, and there are still far too many institutions open in America. They are still in the process of closing institutions here in Virginia. I could list more. As my wife said, “America is still not good enough to its citizens with intellectual disabilities”.
PSN: Any advice/tips for others who wish to present new legislation?
PP: Stay above the fray. Do not get into the “political weeds”. Try to find a way to get people involved from all parts of the political spectrum. Find friends that you never thought would be your friends. They are out there.
