Another Interruption, Update on my Trip to the White House

I wanted to share a little about my BIG day yesterday, I mean, how often does a girl get to go to the White House? It was very exciting and interesting. I went with my mom, Rylin Rodgers (she works for lots of places; FV Indiana and the Riley Child Development Center) and with Margaret Comeau (Catalyst Center), Brooke Lehmann (National Family Voices Policy Director) and Diane Malley (The Statewide Parent Advocacy Network (SPAN) of New Jersey)and her family including her daughter, Carissa Schlichting, who is going to be a Freshman in High School. For the first BIG meeting we meet with by Kareem Dale (special assistant to the President on disability issues), Jon Carson (director of the office of public engagement) and Nancy Anne DeParle (deputy chief of staff to the President), along with members of Kareem's staff. They asked each of the adults to share why Medicaid is important to families who have children with special health care needs. The thing about Medicaid is that it is COMPLICATED, there are lots of different types and states have different rules. The other families live in states where kids with serious health conditions have Medicaid coverage when they are born, in Indiana where I live there is a waiting list and I have only had Medicaid for a few years. This is was important because my mom could talk about what it happens to kids who don’t have access to Medicaid and why even really good health insurance is not enough to take care of kids like my brother and I. I got to talk about how Medicaid helps me and kids like me, I also got to talk a little bit about what would happen if I didn’t have Medicaid (very scary) and what did happen when I didn’t (very, very scary).


Kareem and Jon (do you think I can call them that?) talked about what was happening with the debt ceiling and how many people including those in Congress don’t know what cuts to Medicaid will mean to families. My family has told our story to our Representative and Senators and has asked everyone who knows us to call too; I want to make sure that the elected officials make decisions know about the kids and families this matters most to. I really don’t think it should matter if the officials are Republican (like my Dad), Democrat (like my Mom) or Independent, they need to know that disabilities and special health care needs can happen to any family and that families like mine are important parts of our county.

I think it is excellent the President Obama is asking real people like my family to talk about this issue, and I wanted to THANK him for working on this for me (and so many other kids).

I got to go to a 2nd meeting with Brooke, Margaret and my Mom to speak with Vice President Biden's staff about Medicaid. That was great too, and I just have to say the crown molding and ceiling in his offices were really cool. Getting to go into his office was pretty much the highlight of my day, maybe someday I will get to see the Oval Office!

I was excited to get to go to these meetings, I learned a lot and it was great to try to help other families. I am worried about what could happen to me and other kids like me if Medicaid is cut. You might know from reading my blog that I have BIG dreams and goals and that I need a little help to reach them (wheelchair, medicine and TONS of doctors). I hope you will call your Representative and Senators and tell them why Medicaid matter to your friend Laura and other kids like her.

THANKS!!!!

P.S. Back to books, I promise! I have 5 I need to post about from the past couple of weeks!