NOTE: On June 19-20, the Children's Hospital Association held our ninth annual Family Advocacy Day in Washington, DC. Fifty-four amazing kids came to Washington to advocate for better health care for kids. In this post, mom Carye Everett shares her thoughts on the experience. (Click here to read Carye's blog post about her daughter, Tori.)
We had a very powerful visit to Washington DC. We met with the chiefs of staff for three Representatives and one Senator.
We started out with a tour of DC and visited the Lincoln Memorial and the Smithsonian Air and Space Museum. After returning to the hotel for lunch, we attended a session about how the kids need to speak up about their needs. They watched a great presentation and saw a Schoolhouse Rock video about how a bill becomes a law. We were even able to see some practice sessions about how to speak to our members of Congress on Thursday. Sarah Wayne Callies, who played Lori on The Walking Dead played the Congresswoman. Brittany almost jumped out of her skin when she was able to meet her. Max, the boy who played Darth Vader in the commercials, came to tell his story. Tori enjoyed talking to him about open heart surgery, something they both have in common.
That night, we had a fantastic party to attend. There was a band playing music for the kids. Tori enjoyed dancing and playing instruments with them. The teen area had a basketball game, air hockey and a lounge. Each one of us got at caricature done and the girls had face painting. During the day, the girls had received a gift; Tori received an autographed picture from Selena Gomez, and Brittany received a copy of Katy Perry’s DVD and Katy had signed the DVD case. The girls were so excited with their gifts.
Thursday, we were introduced at each office, and then we told our story. We spoke explaining what life was like with one disabled child, and then how it changed even more when we faced yet another medical crisis with Brittany. The circle of care spreadsheet was provided for each chief of staff, showing in detail of the number of doctors, prescriptions, diagnosis, medical equipment, and therapies each girl has. It was something tangible that they could review and then share with their Congressmen. After we spoke, the representatives from the hospital talked about their needs for health care.
We were able to explain how wonderful it was when Tori had
medical assistance for the year she spent in the hospital. Then we explained
how hard it has been financially since we had medical assistance taken away.
The government views the parent's income to decide if a child needs assistance,
rather than look at the needs of the child, or children in our case. We are in
financial crisis trying to deal with the daily care of our children. We have to
decide each week if we are going pay the bills, buy groceries, or get
medication/medical needs. Our family is on about 30 medications daily, between the
five of us. Some are covered with a copayment, up to $30, while others are not
covered and cost up to $100. It is extremely expensive to have medically
complicated children. And that was our point to the Congressmen.
We also spoke about continuity of care, and the timeliness of making appointments with our doctors. Victoria has almost every type of specialist that there is at Mt. Washington and Hopkins. Having doctors all being able to access the information needed for continuity of care is extremely important. Due to the fact that she is so medically complex, doctors need access to her records. Making doctor appointments also should not take months for children like Tori and Britt, or any child. Specialists should be accessible when they are needed and the government should make it easier for doctors to specialize in diverse fields.
I managed to get through the day without tearing up. I stayed focused on what I needed to say and get my message heard. So many people need reform to health care, especially for children. I feel like I now have a new mission in life. I need to help get health care reform for children like ours and other medically complex children. More people need to reach out to members of Congress around the country so Medicaid will not be cut and the criteria for getting access to help changes, so families like ours can get help.
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