Hope on the Hill

Two days in D.C. One-on-ones with six members of Congress. A meeting with a top lobbyist. Private tours of the Capitol, Pentagon and White House Executive Office Building. A mock on-camera interview. Training and mentoring. Networking lunches.

You'd think this was the schedule of a Fortune 500 CEO who flew into Washington, D.C., for a whirlwind lobbying blitz. But, it's actually a rundown of the time my 19-year-old cousin Vann, who has Down syndrome, spent in Washington, D.C., in honor of International Down Syndrome Day. Vann dreams of going to college and living independently. As a family, we are committed to making that happen. And I wish it was a possibility for more families.

Almost 400,000 Americans have Down syndrome, a chromosomal disorder that affects people of all races, genders and income levels. Down syndrome is one of the most common genetic disorders, and increases in frequency as the age of the mother increases. Amazingly, in the past 30 years (just my lifetime), the life expectancy for individuals with Down syndrome has more than doubled, and a majority of people with Down syndrome now live past 60. That means science and medicine have leaped forward, while legislation has struggled to keep up.

Back to Vann. The two days I spent with Vann on Capitol Hill were some of the most humbling and rewarding (and tiring) of my life.

In the middle of the health care debate, Vann met with Rep. Cathy McMorris Rodgers, cofounder of the Congressional Down Syndrome Caucus and mother of a young boy, Cole, who has Down syndrome. The congresswoman is a key member of House leadership, but she took time to give Vann a tour of her office and introduce him to every member of her staff.

Vann also met with Vince Randazzo, who advocates for the National Down Syndrome Society. They discussed the 2014 ABLE Act, which offers a pathway to independence for people like Vann by creating tax-advantaged savings accounts that can be used to pay for education, housing and transportation, without jeopardizing other forms of governmental support. Before the ABLE Act, individuals with disabilities who had more than $2,000 were not eligible for any governmental benefits, including Social Security and Medicaid or Medicare.

By lunchtime the first day in D.C, Vann was so confident that he sat down with a stranger who was eating alone and asked what issues he was working on. I loved turning around to see the two of them, looking like seasoned advocates, chatting and sharing notes from their morning meetings. I don't know if Vann's meetings with members motivated them to do more for people with Down syndrome, but they certainly bolstered Vann's confidence and reaffirmed to me that we should do more to make it possible for Vann and others to live out their dreams of college, career, marriage, independence.

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One of my favorite moments was Vann's meeting with Rep. Luke Messer, who represents Muncie, Indiana, where Vann wants to go to college. In Muncie, the Erskine Green Training Institute provides postsecondary vocational training that prepares individuals with disabilities for employment in the hospitality, food service and health care support industries. It's a phenomenal program, but it costs $21,000. And while some scholarships are offered, FAFSA isn't an option because the program isn't accredited. I hope my family can pool our resources to send Vann to college, but how many families can do the same? Shouldn't FAFSA offer some flexibility in the types of programs that meet its requirements for people with disabilities?

Vann's time in Washington, D.C., reminded me that we need to do more for persons with disabilities and that opportunities need to extend to individuals who aren't from privileged families. Advances in medicine have dramatically increased the life spans of people with Down syndrome and the number of people born with Down syndrome is likely to go up as mothers get older. I hope Vann is willing to come back to D.C. in the not-too-distant future, for some more lobbying of decision-makers on behalf people with Down syndrome.