Posts Tagged ‘Legislator’

Writing a Lobby Day Letter

February 2, 2009

I was asked to offer help to those who couldn’t make it to Lobby Day: specifically, would letter writing help, and if it would, what should the writer say?

Yes it would help, but there are a few guidelines you need to follow. First of all, write only your Representatives and Senators. While sending a letter to Nancy Pelosi may seem like “going straight to the top”, if you live in Iowa all you are doing is wasting your time. If you don’t live in the politician’s political district, your letter is almost instantly discarded. They just have too many constituents requesting their assistance to pay attention to a non-voter.

Also, call your Senator’s or Representative’s office, and ask if faxing a letter is acceptable. Ever since the Anthrax scare in 2001, mail sent to Congress is rerouted to a postal facility for any needed decontamination before being delivered. This slows down the mail to Congress considerably. While a written and mailed letter is considered more “important” (because someone actually took the time to write and mail it; therefore the writer must care deeply about the issue they address in the letter) a fax arrives much quicker. E-mail is generally frowned upon.

State who you are and where you are from as soon as possible. “Hello, my name is Al Smith and I reside at 1294 Main Street in Sunnyvale,” is a good opening sentence. It established the fact that you do live in the district and prevents your letter from being discarded.

Politicians like personal stories, so tell your story. Let him/her know about your child that was diagnosed with a Congenital Heart Defect. The same applies if your are a CHD Survivor. I won’t elaborate any further, since we all have our own unique tale to tell. You know what you want to say, so say it! If your are a member of a CHD support group local to the area (or a national organization, like the Adult Congenital Heart Association) try to mention them. That could help them out if they send lobbyists to the Congressional office.

Next, make your request. The National Congenital Heart Coalition (the umbrella group containing the ACHA and other national heart organizations) is lobbying for a National Registry of Congenital Heart Defect survivors.

Think about it, read the links, and decide what a Registry would mean to you. Yes, the registry is aimed at adult survivors – compiling information from adults gives us instant results, since most of their surgical procedures are (hopefully) behind them. And I’m not asking you to support something that you’ll never benefit from: Statistics from the Registry can be used to plan treatment for younger patients. After all, we’ve had these surgeries and taken these medications, and generating statistics will show what works and what doesn’t. If the information is available, why shouldn’t it be used to treat your Cardiac Kid?

Now comes the hard part – condensing all of this down to fit onto one typewritten page! Thankfully, it doesn’t have to be double spaced. ALWAYS be polite and respectful, and be sure to include contact information. Try to time your fax to arrive on or just before Lobby Day – February 10, 2009.

Preparing for Washington

November 20, 2008

I have said it before and I will say it again: I want you to register for Lobby Day 2009 and go to Washington, DC to join the campaign for better health care for Congenital Heart Defect survivors.

You can do this. It is not difficult.

We’ve got your back; there are going to be at least 78 people there (that was the total number the last time I heard, two weeks ago!) and you won’t be sent into a legislator’s office by yourself on a do-or-die mission. There will be at least two – usually more – in a group, and there will be a training session the morning of the event. And although the registration link is on the Adult Congenital Heart Association’s (ACHA) webpage, you don’t have to be a member of the ACHA. Hey, you gotta sign up somewhere, you know!

You’ll note that there is advice on the sign up screen about bringing small children. That’s not because we don’t want kids running around: Lobby Day is very busy with a lot of walking involved. We aren’t going to meet our legislators in the Capitol building, but rather in seven office buildings that surround the Capitol. Here’s a MAP of the area and here is a PHOTO, to give you an idea of just how much walking is involved.

Once you are inside any of the office buildings, you will find that they are all interconnected by tunnels (there are even three subways under the Capitol – you usually have to be a legislator, staffer, or escorted by someone to use them, however) so there won’t be any worries about being in cold weather or dealing with downtown traffic. But by the end of the day, your children will be exhausted.

If you are flying into DC, you want to fly into Reagan National Airport. It’s the most convenient way to get into town. Dulles has no public transportation into DC; you have to take a long, expensive taxi ride. There is a way to get from the Baltimore airport to DC, but it involves taking taxis, buses, AMTRAK (!) and the Baltimore Light Rail system. Reagan is far simpler.

When you get off the plane at Reagan National, go to Baggage Claim and collect your suitcase. Near Baggage Claim is a covered walkway (Covered, but not enclosed) that takes you to the airport Metrorail station. Washington’s Metrorail is clean and pretty safe; obviously nothing is perfect but I rode it twice (After arriving and before leaving) with my suitcase and wasn’t bothered. Just don’t parade around like a hick tourist and you should be OK.

Take Metro to the McPhereson Square station and get off; keep your ticket handy. If I remember correctly, you have to “swipe” your ticket as you walk through the exit turnstile, but that may have changed. Once you hit street level, the hotel is a short taxi ride.

Monday night there will be an informal get together; it is a great time to meet new friends and catch up with those you have not seen in a while. Tuesday morning we will travel to The Capitol Hill Club for breakfast and our training session. Then we’ll be taken to one of the Capitol office buildings and turned loose! Bring some cash, you’ll probably have to purchase lunch in one of the cafeterias or snack shops.

Business attire is standard dress for Congress; men, ties and coats; ladies, dress nice! (You think I’m going to tell a woman how to dress? I have been accused of being crazy, but I am NOT stupid!) There will be metal detectors in the office buildings, so prepare to be scanned. Pacemaker patients, prepare to step out of line and ask for a hand search. (And remember, NO WANDS!)

If you are given a business card, keep it. When we return to the Club we’re asked to fill out a “visit report” listing who we saw and how it went. The cards will help you with that. Also you can save them, and contact the people you spoke with earlier. Don’t worry about getting them confused, all the cards will say something like “Miss Empha Zema, health care assistant to Senator James Ironbottom” so there won’t be any trouble trying to remember who’s who.

We may also be asked to write a short thank you note to the people we saw. And when the day is finished, that’s it! We’re free, enjoy the evening in DC if you want to. Most of us will leave the next morning, but a few will stay an extra day for sightseeing.

See how simple it is? So now… what is stopping you? Sign up!