Super Dadvocates: Super Dads Making a Difference
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.