Real Life Stories

The Time is Right! Youth are the Future

By Mallory Cyr
Youth Coordinator, Healthy & Ready to Work National Resource Center

How did I get here? How did I get to a point where people all over the country are hearing my voice? Every time my flight lands in Washington, DC I ask myself these questions. Each time I get an opportunity to give a presentation, attend a national conference or be part of an advisory council, I am in awe of being in the presence of people who have the power to make change happen and who ARE listening. I am a young adult who grew up and lives in rural Maine. I graduated from the University of Maine, like many of my peers. My whole life, my parents encouraged me to shoot for the stars, reach for my dreams, and live without limits. For anyone else who was diagnosed with a rare, severe chronic illness that involved nightly 12 hour IV infusions, that might seem like an unrealistic way to live life, but my parents always told me, “we’ll find a way.”

As a sophomore in high school, in 2001, I was invited to attend a conference about transition. Through a HRSA/MCHB funded grant initiative called Healthy & Ready to Work, my home state received funding to develop and implement health care policies and programs to promote transition to adulthood. This conference gave me a new perspective on what my options were, and what I needed to consider to make a smooth transition to adulthood. I was fired up and more ready than ever to go on to college.

 

Others noticed my enthusiasm, and shortly afterwards, I was invited to be a part of forming the first Youth Advisory Council for the state Title V CSHCN Program in Maine. It was also the first in the country (there are now 22)! I began to learn leadership skills, how to give presentations, and how to present the “youth voice.” It wasn’t very hard, since that is who we were. We were just telling our stories, but for me, it was the beginning of much more. We spent time creating presentations for our teachers, parents, doctors and peers. We planned a statewide transition conference much like the first one I attended. It was an incredible feeling to see other transitioning youth get the same thrill and sense of hope I had gotten from my first conference, and I had helped create this opportunity!

When I was nearing my college graduation (a feat that was never expected, since I was not predicted to live past the age of two), I was asked if I would be interested in applying for a job on a federally funded grant, well actually split time on two grants! After my interview, I was offered two part-time positions, one as the Youth Coordinator for the Healthy & Ready to Work National Resource Center and for the Maine State D-70 Integrated services grant both funded by HRSA/MCHB’s Division of Children with Special Health Care Needs. I jumped at the chance, excited to be making a job out of what I had already been doing for years.

That was almost two years ago, and although I quickly discovered I knew only a miniscule fraction of what I thought I did about advocacy, I can now say I am on a consistent path of knowledge and growth as a health care policy leader in the world of Title V and MCHB. Of all the stars I reached for in my childhood, not once did I say “I want to change the world for people with disabilities and special health needs.” But being on that road, and having my voice heard and taking steps in making change I can honestly say there is no feeling like it, and am now thinking I may have found my “calling” in sharing my story, helping to create and shape national policy as well as making sure the voices of youth are included and heard.

As my plane touches down with the majestic Washington Monument on the horizon, I take a deep breath to center my energy and motivation that has built up. I have arrived. A week of presentations, networking, and world changing is about to occur, and I am ready. It’s been 20 years since MCHB launched family centered care (OBRA ’89), and 13 years ago since it began a new initiative to promote youth involvement and transition to adulthood programs and policies. Youth are the future; youth with special health care needs know health care issues, as they live it everyday. All they need is the opportunity for professional development, partnership and a forum to share ideas, shape and develop policy to really be heard. I am proud to be a Youth Health Policy Leader and to be a part of that future that begins today.

I look forward to being part of the youth leadership movement that is growing statewide and nationally! On “my watch” I hope to see on the leadership level--Youth Advisory Councils in every State Title V CSHCN Programs nationwide, staffed by youth who are diverse and their time compensated; that youth are at the policy table as respected partners and at the individual level; and, youth are given opportunities and skills in managing their health care. The time is right.