Support for Those Living with Adrenal Insufficiency

Is Legislation Right for Me?

Part 1: IS LEGISLATION RIGHT FOR ME?

Learn some helpful tips to help determine if working for protocols through legislation is the right choice for you.

Bill signing kirsten-tristan
When you are thinking about legislation there are a few basic questions we want you to consider and answer for yourself.

 

 

 

1. Do you have the time and support?  

Legislation is hard work and you must be willing and able to devote time making phone calls, writing emails, visiting legislators, testifying, etc. If you have a full time job you will need to take time off to testify in person. Can you do this? If not do you have others in your state who can?  (If you can’t be there in person you can send written testimony, but someone must be there live as well.)

Do you have a spouse, good friend or someone close to you who will be emotionally supportive?

Do you have a spouse, good friend or someone close to you who will be emotionally supportive?

2.  Have you tried other things first?

Any legislator you approach will want to know what you’ve done to solve the problem before approaching him/her.

Have you gone to your local EMS Director to request protocols? What was their response? How hard did you try. The same holds true for the school district. Have you gone to the principal and school nurse.? If they said no did you try to go above them?

3.  Can you handle disappointment and the emotional stress that you will endure.  

Even if your bill passes you will come into contact with people who don’t understand, who will think you are crazy, who will dismiss your concerns, who will not believe a word you say. Some days you will feel elated and empowered, other days you may feel total defeat. Working in the legislature is full of ups and downs, but if you are determined it can be done.

If you answered yes to all 3 questions you are ready!

Here’s what we recommend. We admit we did not do all of these steps, but from our mistakes we are able to help you be more successful.

1.  Contact AIU and ask for help

You don’t have to do this on your own, you can set up an appointment to discuss legislation by sending an email to contact@aiunited.org

2.  Write down each thing you want and why

Examples:

“Training for Emergency personnel because my husband did not get the proper treatment when I took him to the ER.”

“A trained staff person at my daughter’s school because they told me no one could give her an injection. Then when a field trip was scheduled I couldn’t get time off from work and she missed it!  That’s not fair and is discrimination against my daughter.”

3.  Gather your allies

Physicians, teachers, school nurses, EMTs, ER personnel etc. Find as many as you can.  Don’t forget to talk to family, friends and co-workers, they may have legislative contacts or experience that can help you.

Keep in mind school employees are usually not allowed to work on legislation during work hours or to use work email to discuss it. Ask them out for coffee on the weekend and if they are willing to help use their personal email, rather then their work email, to communicate. 

4.  Call your state Senator and Representative and make an appointment to speak to them face-face. 

This will most likely be two meetings but you could always try to get them at the same time. Usually their offices are on opposite ends of the Capitol.

Be sure to identify yourself as their constituent and state that you have a life threatening issue you need their help to solve. Most Senators and Representatives will have days they are in their district vs the state capitol so if necessary ask for a date where you can speak to them in your own city. If they indicate they have no time, ask to meet with their policy advisor. Often these legislative assistants will be your best allies and will spend more time meeting with you then the legislator.

Be sure to ask their assistants how their Senator or Representative prefers to receive documents. Some will want a hard copy and some will want you to email any information ahead of time.

5.  Prepare for your meeting

Find out how many bills each Senator and Representative are allowed to introduce.

Look to see what committees they are assigned to.

Do a bit of research on their website to see what types of causes they seem passionate about .

Find out when the session starts and ends.

Find out when the deadline to introduce a bill is.

If you’ve missed the deadline don’t despair follow through with the meeting ask them to consider a bill for the next session.  Let them know you are willing to do some leg work to get all your “ducks in a row” for next year. 

Prepare a one page flyer outlining your needs and reasons for them.  Bullet points are great for this and we can help.

I recommend printing copies of the one page flyer so you, the legislator, and whatever aides sit in on the meeting have one. You can indicate that you have or will send it electronically. What I found was the ones most interested wanted to keep their hard copy even when initially saying they only wanted an email copy. So come prepared to leave materials behind.

Practice your “pitch” most meetings are short, you may only have 10 – 15 minutes to make an impression and will most likely not get an answer that day.

6. During the meeting

Take notes or better yet bring someone with you who can do this while you talk!

Try to keep emotions in check. State the problem and your proposed solution. If they say they are not on the right committee or not the right person for this legislation ask them who is and request an introduction.

Listen to them closely. Many of the most interested legislators started telling me stories about their own issues with medical conditions. Let them share! You are making an important connection.

If they are dismissive and not interested listen and ask questions. Even though it’s hard to hear, you are getting a good idea of the type of opposition you will face. This is important and helpful.

If you are asked a question you do not know, don’t panic.  Simply say, “I’m sorry I don’t know that, but I will try to find out for you.”

7.  After the meeting

Send a thank you email within one day. Feel free to CC AIU contact@aiunited.org so we can help with any information still needed. If you CC us make sure to explain why you are doing so.  example.

“Thank you for meeting with me Representative Smith, I’ve CC’s Adrenal Insufficiency United so they can help answer some of the questions you asked.”

Restate any questions you were asked and assure him/her that you are working to gather more information on questions you are unable to answer.  example “I’m working to find out how many ambulances are in our state.”

Remind them of what they agreed to do in a positive way.  such as “Thank you for offering to introduce me to Senator Brown, I look forward to that email.”

8.  Follow up again later

Be sure to put a date on your calendar to send a follow up email a couple weeks later.

If during the meeting you were given a time frame for action put that date in your calendar.

For instance: The first time I approached my Senator I’d missed the session and he told me to email him in 10 months. I put that into my calendar as an alert so I wouldn’t forget.

In the follow up email thank them again. If they have not followed through on what they offered give a gentle and kind reminder.  If they have followed through thank them and ask what the next step should be.

9.  If the Senator or Representative offers to help you with a bill YEAH!!

Ask if you are able to sit in on the meeting with the legislative counsel to discuss the bill. (This is the lawyer who writes bills for the legislators)

AIU is also willing to schedule a call with whomever is assigned to the bill as well.  In Oregon the lawyer writing the bill cannot talk to anyone but a legislator unless they have been given permission. While this may sound crazy it’s because the lawyer is legally hired by the legislators so they cannot disclose information without consent.

Be sure to bring the same information to this bill writing meeting that you did at the initial meeting with the representative. Also bring any other materials you have gathered to answer questions that may have come up.

10.  Steps to take next will be a separate blog titled

Part 2:  Yes, Legislation is Right for Me! Now what do I do?

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

Recent News and Events

  • What Constitutes an Emergency
    What Constitutes an Emergency
    October 12, 2017 by
    by Sarah Reilley   Read more from her blog @ Spoons and Adrenals As we all know, adrenal crisis is a life or death situation.  Without immediate, proper care, there’s a very small window to correct the crisis before coma, brain damage, and death occur.  Not every emergency...
    Read more
  • Conference on Adrenal Insufficiency
    Conference on Adrenal Insufficiency
    October 1, 2017 by
    Registration for AIU’s first ever conference devoted to adrenal insufficiency is now open! We are thrilled to open registration for our March 23-25 conference held in Kansas City, MO.      With an amazing line up of professionals addressing a wide range of topics this conference is not to...
    Read more

Our Partners & Sponsors

Contact Us

Toll Free: 1-855-248-6483
PO Box 72407
Springfield, OR 97475
Tax ID: #45-4624912
contact@aiunited.org
Facebook
Instagram
LinkedIn
Pinterest
Twitter
YouTube
Patreon

Medical Professionals

Doctors and other medical professionals email us for more information.



Join our Email List

We respect your privacy and will never share your information.