By Bob Hage, advocate from The Arc of New Jersey and father of two daughters with I/DD
It was a typical Saturday for our family – I was shuttling our 13-year-old son Vann from a hockey game, while my wife Odette Adrian was home with our girls, Annika and Maya.My cell phone rang, and it was Marty Ford with The Arc’s national office.What she said was anything but typical…
“Bob, would you like the chance to meet with Vice President Biden?”
Our Family and the “Fiscal Cliff”
Marty had the opportunity to suggest a few names of people whose families included people with intellectual and developmental disabilities to meet with Vice President Biden about the potential impact of taxes going up in January. I’m sure you have seen all over the news the dramatic “fiscal cliff” countdown, as leaders in Congress negotiate with the Administration on whether or not to extend tax cuts for the middle class. If they don’t extend the cuts for the middle class, then families like mine could see a $2,000 or more tax increase in 2013. And that could have terrible consequences on our family’s ability to pay for disability-related expenses.
My beautiful 9-year-old twin daughters, Annika and Maya, are the light of my life. Both my girls have severe developmental disabilities and are non-verbal and medically fragile. We’ve been involved with The Arc since Annika and Maya were very young – The Arc of New Jersey has given us a place to go with questions and has served as a vital link to other families like ours and resources and information that we couldn’t do without.
So Marty’s question had barely sunk in before I was calling Odette and we were drafting our family’s biography to submit to the White House. While we have been involved with The Arc nationally, as part of their re-branding initiative in 2011, we had never had this kind of chance to advocate on behalf of Annika and Maya and millions of families like ours ever before. This was huge, and while Marty warned that many other organizations were responding to the White House’s request and we may not be chosen, I had a feeling that this was our chance to make a big impact.
Fast forward five days, and I was on a train to Washington, DC for a meeting with Vice President Biden. I huddled with the staff of The Arc’s national office, who gave me top-secret information about where I was to join the Vice President and the other meeting attendees. We had all assumed it would be at the White House – but it turned out that I was having lunch at a diner in Arlington, Virginia. Security is always top of mind when the Vice President is involved, so I couldn’t even tell Odette where I was going!
The Big Meeting
The next day, I joined six other Americans for a candid, in-depth discussion with Vice President Biden. It’s an experience I will never forget. I had brought along a photo of Vann, Annika, and Maya, and I shared it with the Vice President. He immediately smiled, as any proud father would, and connected with our family’s story. Annika and Maya have defied so many expectations, and I’m immensely proud of my girls.
I shared with him that Annika and Maya go to speech therapy, which has been instrumental in moving them from being totally dependent on liquid tube feedings to eating all their nutrition from pureed foods. Currently, speech therapy’s primary goal is to help Annika and Maya learn to chew so they can eat solid food.
Both girls participate in weekly music and gymnastics classes for children with special needs. While music and gymnastics is recreational for most children, it is vitally important to Annika and Maya’s development. The music class focuses on building finger strength and coordination through piano and helps the girls to vocalize through singing. The gymnastics class concentrates on building muscular strength and endurance which is especially important for children with low muscular tone.
But if we were to face a tax increase in the thousands of dollars, some of their therapies and classes that help them develop could be cut from our family’s budget.
Not only did Vice President Biden listen, he clearly understands the challenges families like mine face, and I walked away trusting that he will do everything he can to protect my daughters’ future.
Please join me in being a strong advocate on behalf of The Arc – join The Arc’s action community today.