Advocating with Legislators
for Parents of Kids Who are Medically Complex
In these times, it is critical to let your voice be heard with your elected officials. However, a lot of parents don’t know where to start, who to call, or what to say. After all, it can be frightening to reach out to high-ranking politicians, especially if they don’t agree with you.
In this article, we will take you through the whole process, from finding your legislators, contacting them, and crafting your argument, to actually finding out how to be an effective advocate.
Step 1: Find Your Legislators
To begin with, it is important to know who to contact. There are two groups of people you need to find: your federal legislators and your state legislators.
The most useful tool we have found for locating all of your elected officials in one fell swoop is Ballotpedia. Simply enter your address and it will provide you with a customized list of all your elected officials. Clicking on Congress will give you your two federal Senators and your one federal Representative. Clicking on your state name followed by Senate (for example, Illinois Senate) will give you your one state Senator. Similarly, clicking on your state name followed by House of Representatives (for example Illinois House of Representatives) will give you your one state Representative. Note that other elected officials, including the President and your state Governor, are also listed.
You should identify the following five individuals:
- Federal Senator (one of two)
- Federal Senator (two of two)
- Federal Representative
- State Senator
- State Representative
Once you determine the names of your legislators, you can click on their Ballotpedia page to learn how to contact them. Most have a link on the right to their website. You can then find their phone number, fax number, and email address on their website. In some cases, you may need to search out this information, especially email addresses. Often, browsing their official page, either on the Senate or House of Representatives pages, or on the equivalent state pages, will allow you to find their email addresses.
Once you find your legislators’ phone numbers, add them as a group to your cell phone. Then, you have them programmed in whenever you need to call them. Similarly, you can store their email addresses, fax numbers, Twitter handles, and Facebook pages in your computer or phone.
Step 2: Figure Out Who to Contact
Next, you need to determine which legislators to contact regarding your issue. If it is solely a state-based issue, such as a specific Medicaid program in your state, you need to contact your State Senator and State Representative. If it is an issue that involves federal laws, such as the ACA or federal Medicaid legislation, you need to contact your Federal Senators and Federal Representative.
In some cases, it can be especially important to contact a specific legislator if you know that a bill will be before him or her, or if that person sits on a specific committee that is taking a look at a bill. For example, if the Senate Committee on Health, Education, Labor, and Pensions is taking a look at a bill on healthcare, and your Senator sits on that committee, you definitely want to make a special effort to contact him or her.
Step 3: Find a Method of Contact
There are many different ways you can make sure your legislators hear your point of view. The following list is in order of most effective to least effective:
Show Up at a Public Event
Attend a public event held by your legislator, such as a Town Hall or other similar event. When you are in a public setting, your legislator is forced to listen to what you have to say. Prepare one question or comment in advance on a single topic and make sure you get to ask it. Bring as many friends and other similarly affected people as you can to make your message stronger. If at all possible, bring your child with you. It is especially hard for legislators to ignore children in wheelchairs or with medical equipment at events like these.
Visit Your Legislator’s Office
Another great option is to visit your legislator’s office during open office hours. Depending on when you go, you may or may not have direct access to the legislator. Ideally, try to speak with the legislator, but when that is not possible, you may also convey your message to a staffer. Note that most state legislators are in their home offices very regularly, but federal legislators tend to come in for just a few days per month when the legislature is in session. Try to time your visit accordingly. It is fine to call ahead for an appointment. Once again, bring your child if possible. Seeing an actual child who will be affected with medical equipment makes a huge impact.
Call Your Legislator
The next best method is to call your legislator. You may call his/her local office or federal office or both, though local offices tend to be more responsive. In almost all cases, you will talk to a staffer. Ask for the staffer who handles your issue (such as health care or education). Make sure you focus on only one issue per phone call.
Fax Your Legislator
While it may sound arcane, if legislators are receiving lots of phone calls or calls are going to voicemail, you may choose to instead send a fax. Most offices still have fax machines, and sometimes this is the only way to reach a busy legislator. Include a photo of your child to personalize your message. Contacting local or district offices is best. Resistbot is a new tool that will turn your texts into faxes and direct them to the correct individual.
Mail Your Legislator a Postcard of Letter
This strategy is more effective for state legislators, as federal mail is carefully screened and may not be delivered for weeks or even months. Mail correspondence to both state and federal legislators at their local or district offices. Include a photo of your child to personalize your message. Handmade cards tend to get more attention.
Send an Email
If you have no other option, you can always send your legislators an email. Some only accept emails through their contact forms on their websites, but others distribute their email addresses freely. While some legislative offices check their email quite regularly and are very responsive, others, especially federal legislators, are overwhelmed by messages. Your message may not be read or acknowledged by some legislators. If possible, include a small picture of your child (under 1MB) to personalize your message.
Most legislators, especially state-based ones, are very active on Twitter. Using Twitter by publicly tagging your legislator can be a very effective strategy, as your comment is publicly available to all.
Use Facebook and Other Social Media Platforms
Most legislators no longer allow you to post to their Facebook pages or send them messages, though some local legislators may be more available. Still, if a legislator posts a comment or link about a position or vote that you agree or disagree with, you can comment on the post to make your position known.
Step 4: Know What to Say
First of all, the most important thing to convey is that you are a constituent. This means that you live—and vote—in the district of the legislator you are contacting. When you first call or visit, make sure they know you live in their district. Also let them know that you voted for them, if you did. Sometimes, staffers will ask for your name and zip code to ensure you are a constituent.
If you are visiting in person or calling on the phone, ask to speak to the legislator personally. Many times, especially with federal legislators, you will not be able to speak to your legislator. In that case, ask for the staffer who is in charge of whatever issue you are asking about, whether that is healthcare, education, or some other topic. Get to know the staffer personally if possible, because staffers can make a huge difference in convincing a legislator to take a position. Find out the staffer’s name, and try to always follow up with the same staffer.
Next, make sure you choose one, and ONLY one, topic to address. You will be most effective if you advocate on only one issue at a time. This, of course, means you will likely need to make multiple calls or visits; however, keeping on message is critical to getting your point across.
Your most powerful weapon is your personal story. When you personalize the issue, it makes it much harder for a legislator to oppose what you have to say. Bring your child or send a picture of your child. Describe why the issue is important to your child and say exactly how it will affect your child.
Remember to always be polite and calm, even if your legislator disagrees with you. It can help to write down what you want to stay in advance. Keep it brief. It is OK to be emotional, but make sure you don’t let emotion get in the way of the facts on the issue.
While your personal story is always best, it is also useful to have some facts, figures, and data on hand to support your position. Make sure you do your research so you understand exactly what the issue is. Realize that many times legislators have limited to no understanding on some of the most important issues that affect your child. They may have no idea what a Medicaid waiver is, what Katie Beckett programs are, what IDEA is, or what EPSDT is. In many cases, you will need to educate them on these programs, including how they work and how they affect your child. Make sure you do your research!
When at all possible, combine your efforts with others so that a legislator receives hundreds of simultaneous phone calls or emails on the same day. It is a great strategy to target one official or group of officials at a time to concentrate the message.
It is OK to use form letters, emails, or scripts. However, it is best to personalize them with your child’s story. One personalized story with a picture has a much greater impact than 50 copies of a form letter.
Step 5: Follow Up
After making your calls and visits, see how your legislators vote or act on the issues you are interested in. If you agree with their votes or actions, make sure to call, email, or Tweet a thank you to them. If you disagree, make sure you call, email, or visit to let them know you are disappointed in their actions.
Most importantly, remember to vote, and remember how your legislators acted. If you don’t agree with their actions, vote other candidates into office.
Author: Susan Agrawal • Date: 3/14/2017