Dr. Palfrey testifies

On June 12, 2009, Judith Palfrey, MD, president-elect of the American Academy of Pediatrics, testified before the Health, Education, Labor and Pensions (HELP) Committee. Click here to watch video of her testimony.

Our meetings

6/19/2009

What a trip we just returned from! We met a lot of great people and we had A LOT of fun! Thursday consisted of 3 meetings for us. Our 1st meeting was with Chellie Pingree, who wasn’t able to stay to hear what we had to say about how important it is for all children to have health insurance. We were able to get a couple pictures with her and then she had to leave to go take a vote. We were able to express our story to 1 of her staff members who was great! The next meeting was with Senator Susan Collins. She sat for about 20 minutes and was very attentive to what we had to say. She is a great woman. We got some pictures with her and then she was off. The 3rd meeting was with Senator Olympia Snowe, who unfortunately was in a meeting so we were unable to meet her in person. We met with one of her staff members to tell her our experience at Children’s Hospital Boston. All of the staff members that we met with will meet with their “boss” and hopefully relay our information to her. I am hoping that they will take everything into consideration and get a bill passed that mandates all children have health insurance. We would like to express our deepest graditude to NACHRI and to Children’s Hospital Boston for giving us this amazing opportunity. It was so much fun!

Erin

Thank you

6/19/2009

Today we are home and winding down from the last few days!  We arrived home around midnight so the kids are dragging a little – taking extra-long naps right now to get caught up on some sleep, I suspect!

What a blessing it was for our family to get to participate in Family Advocacy Day, alongside other wonderful families who are passionate and committed to taking action in the best interest off ALL children.  We met SO MANY wonderful and inspiring kids and parents!  I think Jakob and Caroline will remember the things they saw and did in DC this week for the rest of their lives, at least I hope that they will!

I always say this about the doctors and nurses we have had experience with at Children’s Hospital Boston, and now I’ll expand it to include the people we met through our Family Advocacy Day experience from government services……You are all such an amazing group of people!  Our lives have been enriched and enhanced because of knowing you!  Thank you for all you did this week!

Laura

Day 2: Telling our stories

I am so impressed with all six of our families! All together, Children’s Hospital Boston met with a total of 15 congressional offices today. When you count the three substantive meetings Josh and I had yesterday, this is a total of 18 meetings – out of the total of 27 offices in our region, this is a fantastic rate. I had the pleasure of joining families for five of those meetings and loved hearing the families tell their stories and watching the legislators and their staff respond to them.

2009 families and staff

Safe travels home!

Pretzels with Senator Reed

I think the highlight of my day Thursday was our meeting with Senator Jack Reed from Rhode Island. I think this is the third or fourth time I have accompanied a family from Rhode Island (this time Bekah’s wonderful family). Every single time Senator Reed takes the time to sit down and really LISTEN to what the families have to say. This morning, he immediately went off to fetch pretzels when Bekah said she was hungry. I suspect this may be because Senator Reed has a 2 ½ year old daughter himself and knows how to keep kids happy.

On a more substantive level, Senator Reed worked very hard last year to make sure that the Children’s Health Insurance Program was reauthorized. He sits on the key HELP Committee which is co-writing the Senate bill, and had a lot to say about the quickly unfolding political dynamics. He clearly believes there is a strong and vocal set of Senators who will continue to speak up for children, and seems clearly to count himself among them.

I was also impressed with the attention that each office paid to the individual situations of our families and whether they could help smoothe some of the difficulties they have accessing care on occasion. It is worth remembering the impact that one’s own elected officials and especially their staffs can have in resolving complex issues, and how those experiences will sometimes inform the kinds of issues the office works on in Congress.

Josh

Special subway ride

6/18/2009
5:00 pm

N.A.C.H put on an amazing party/dinner for all of the kids last night. Jakob and Caroline got some new toys, novelty pictures taken, and their caricatures  done by some very talented artists!

 

 

Jakob's caricature

Caroline's caricature

Today we headed over to “The Hill” to do some business. Jakob and Caroline of course charmed all of the staff members along the way! We had 3 great meetings – 2 in the offices of our senators (Shaheen and Gregg) and one in the office of our representative (Paul Hodes). A staff member in Rep. Hodes’ office was even nice enough to take us on a special subway that the Senators ride beneath Capitol Hill! Jakob loved that! We even spied a couple of more senators along the way – very exciting!

We finished the day with a group photo on the steps of the Capitol – along with a diaper change for Caroline there, too!

Now, we are getting ready to fly home tonight!

Laura

“I need to go pottie”

I had the pleasure of accompanying Jakob and Caroline’s family to their meetings with the offices of Senators Shaheen and Gregg, and Congressman Hodes.  All the NH legislators were hard at work and could not meet with us, but we had a great time meeting with staff members who were both welcoming and very responsive. Our favorite staff member was Alison from Senator Shaheen’s office.  She is having a baby and as a result felt right at home with all our talk about delivery, development and diapers.

Though Laura was the designated spokesperson for her family, it was really Jakob who stole the show.  At the beginning of each meeting, he would announce “I need to go pottie.”  When he would return from the bathroom he would then interrupt the conversation and announce, “I went pottie.”  After a good chuckle for the third time, I began to wonder whether meeting with legislators makes one want to go pottie. I guess only Jakob can really answer that question.  Regardless, the meetings were great and I can’t wait for next year’s Family Advocacy Day!

P.S.- Don’t tell the other families, but after our meeting with Congressman Hodes’ office, we got to take a ride in the secret Senate subway. Jakob and Caroline loved it!

Maria (Government Relations Specialist, Children’s Hospital Boston)

Massachusetts meetings

I accompanied Cody and his family to Capitol Hill Thursday morning to meet with Massachusetts members.  Our first meeting was with a health policy fellow in Senator Kennedy’s office.  The HELP committee was busy at work today marking up their health reform bill.  It was nice of the staff to take time to hear about Cody’s experience at Children’s and listen to our concerns regarding health reform.  From there we went to Congressman Delahunt’s office.  The House was scheduled for 28 votes today, which we hear is a near record number of votes.  Unfortunately, he couldn’t get away from the floor to meet with us, but his staff was very hospitable and generous with their time.  They explained to us how members are informed when votes are being called, and also listened attentively as we discussed how children and pediatric providers could be impacted by health reform.  They assured us they would keep our concerns in mind and encouraged us to keep in close contact as the proposals are further developed.  After a short visit to the botanical garden and a much needed lunch break, we made our way to our final stop of the day in Senator Kerry’s office.  He too was busy and couldn’t make the meeting.  But we spent time with his health legislative aide who is deeply involved in health reform.  We are confident she will convey our messages to Senator Kerry.  Cody, Heather, David, and Matthew did a wonderful job talking about their experience and why Children’s is such a vital resource.

Lisa (Manager, State Government Relations, Children’s Hospital Boston)

Delay

Apologies for the delay in posting new blog entries … we didn’t know that the office buildings on the Hill would not have wireless access! Enjoy the following new posts and pics posted in our Flickr feed.