To advocate means to speak up for what you or others need. If you ask work to change your shift so you can go to the doctor you’ve advocated. If you ask school to accommodate your child's medical needs you’ve advocated. If you meet with legislative offices to support a law limiting the use of step therapy you’ve advocated.
Meet legislators/staff in their Albany or district office
Write a letter or email to a legislator
Call legislative offices
Post/repost on social media and tag legislators
Talk with the media about an issue or write an editorial
Help other people to do these things
Passing bills is a key way the state government make laws and address a wide range of issues. Most bills are passed as "stand alone bills". Some are passed in the budget. If you want to advocate on budget bills or advocate to an state agency over an existing state law, that's another discussion we'll cover elsewhere.
The bill process - the NYS Senate website has a section explaining the basic process for creating & passing bills here https://www.nysenate.gov/how-bill-becomes-law
Find a specific bill - the NYS Senate website has a page for searching current/past bills, where the bill is in the process, and offers email alerts when there's action on a bill. https://www.nysenate.gov/search/legislation The Assembly also offers a bill search without email alerts: https://nyassembly.gov/leg/?leg_video=1
Looking for a bill? To find a bill you need the number assigned to it for the legislative session. Check the bill sponsors legislative webpage. If you don't know who created a bill, or to search different bills, use the NYS Legislative Retrieval System http://public.leginfo.state.ny.us/navigate.cgi?NVMUO
These websites are free to use!
If you're going to work on a bill, or any issue, you need to do your homework.
Learn the issue. Read the bill, and the sponsors legislative website. Check with groups in support of the issue. Using AI for an internet search can be a big help, especially on complex issues.
Write your position. Writing your position helps you learn an issue and creates a handout for advocates, legislators, and media. Use the ABC format. If you want help with your writing, consider using AI. Your goal should be to help people understand the issue and your position on it.
Make a list. Bills are usually handled by specific committees. in the Senate & Assembly. Find out which committee is handling your bill and who's on it. Add the Senator & Assembly member covering you and your fellow advocates. These are the people you start with.
Seek allies. Talk to the bill sponsors because they typically want to hear from those who support their bill and they may have tips for you. Look for other advocates working on the bill or who may be affected by it. Having more allies means more sources of information and more help to make the case.
Watch the bill. You need to know where the bill is and where it's going next at all times so you know who you should be talking to. This is where allies and those tracking websites can help.
Remember, until a bill is signed into law, nothing is guaranteed.
When advocating, here's a formula that can help you make your case:
ASK - Start with the specific thing you want someone to know or do. Example: “I’m asking you to support bill R549.” When you advocate people know you want something, so start with a clear ask.
BECAUSE - Describe what the bill does and give logical reasons to support or oppose it. “Bill R549 limits the number of treatments a health plan can make you try first before you get a doctor prescribed treatment, so it will help people with bleeding disorders get the care they need faster and improve their health." Giving logical reasons is vital because people may not understand the issue or they may have to explain your position to other people. If you offer data to back up your arguments, always get it from credible sources you can cite.
CONNECT - Laws can have the power to change lives, but Legislators, the press, or others don't always see how. Tell them how the issue affects you or others in personal terms. This puts a human face on the issue and helps to drive your message home with a strong close.
Legislators have offices in Albany and their district, so you you have options for where to meet. These tips can help you have a good meeting:
Know your goal. Start by identifying a clear, measurable, and achievable goal so everyone involved will understand the what and why of the meeting(s).
Make an appointment. Different offices have different procedures so call ahead and ask. Dropping by unannounced is not preferred, and should be saved for truly urgent situations.
Dress for success. Wear something presentable yet comfortable; dress or work casual is fine. In Albany if you do multiple meetings it means a lot of walking, so good shoes are a must!
Check the bill status. If meeting on a bill, see which committee has it and who the co-sponsors are. It will affect what you need different legislators to do.
Watch the time. Albany meetings are usually 15 minutes, and maybe 30 in a district office. They may get interrupted, so arrive early and be ready to get down to business.
Be focused. Silence the phones. Plan ahead who will say what. Stick to the topic to keep the conversation on track so you can get your message across.
Everyone is important #1. Legislators can be busy, and you'll often meet with staff. They will report on the meeting to the boss, so treat them as you would the legislator.
Everyone is important #2. Remember that time is limited and the offices are small. Everyone you bring to a meeting should be ready to contribute.
Use your ABC. Briefly introduce yourself, identify any constituents (people from the district), then dive in with your Ask, Because, & Connect, and make sure you leave time for questions.
It's okay to use your voice. Using prepared talking points can help if the issue is complex, but they can also hurt if you're only reciting what someone else wrote.
Keep it civil. It's okay to be passionate and even to disagree on an issue. Just avoid arguing or getting political because that's usually the end of meaningful discussion.
Bring handouts. Have a support letter with your contact info. Bringing other info can help if it directly relates to the issue. Just be mindful these are busy people.
Ask for pictures. If you ask, many offices are happy to let you take pictures of the visit for sharing in your newsletter and social media feeds. Check to see if the legislator has a handle you can tag!
Say you don't know. If you don't know the answer to a question, say so. Then you can be honest and have a great reason to talk to them again about your issue.
Follow up. Afterward, send a card or email to thank them. Include your ask in the message, and provide any answers or additional information you promised.
PRO TIP: Don't expect big results from one meeting. Each Senator represents 300,000+ people. Each Assembly member represents 150,000+ people. In 2023 - 2024 they voted on over 20,000 bills and resolutions. This is a marathon, not a sprint, so pace yourself.
Advocacy can be hard work. Make it a little easier by remembering these rules:
BE POLITE - People remember how you treat them. Don't take more time than you need. Be honest about what you know. Be on time. Keep your word. Say please & thank you, even when frustrated. Your actions give you a reputation that can help - or hurt - your cause.
BE PREPARED - Gather as much info as you can about the issue, and know where to get more if needed. Know your ABC's. While legislators don't expect citizen advocates to be experts on the legislative process, they will expect you to know your own issue.
BE PERSISTENT - It can take years to make progress on an issue. Other issues come up every year, like the Medicaid budget. Remember you're likely to be back, so hang in there and show people on all sides what you're made of. You'll earn respect that money can't buy.
To see a sample support letter.
It's important to have your basic position in a clear, readable form you can give to legislative offices, the press, and others. One way to do this is with a support letter. There are a wide range of styles for support letters, though they almost always include:
The bill numbers and sponsor names.
Your ABC (Ask, Because, Connect).
Who you are and your contact information.
Short, to the point letters are fine especially if you plan to have meetings and do other work on the issue. If writing a letter is the focus of your advocacy then you should spend more time on the Because & Connect sections. A few other tips for successful letters are:
Use a computer to help with clarity, spelling, and grammar.
If you include pictures and graphics, keep them simple and relevant.
Be mindful of your audience and use language/terms the average reader can understand.
Finally, always keep in mind that your letter may go places you don't expect, so be sure you stand by what you say before you say it!
There are many ways to advocate in to support of your cause. This information is geared toward the average citizen who is advocating to New York State legislators and other public officials. If you have feedback on this list you can email us at info@nysrdc.org
The NYS Senate is one chamber of the state legislature and provides a range of helpful info on their website. https://www.nysenate.gov/
The NYS Assembly is one chamber of the state legislature and provides a range of helpful info on their website. https://nyassembly.gov/
The NYS Governor approves or veto's laws, proposes the state budget, and oversees state agencies. https://www.governor.ny.gov/
The NYS Legislative Retrieval System is a free website for searching the laws and bills of NYS. http://public.leginfo.state.ny.us/navigate.cgi
You can find out who your elected officials are and register to vote at the NYS Board of elections. https://elections.ny.gov/
Ballotpedia is a good place to find info on elected officials at the state and federal level. https://ballotpedia.org/Main_Page
LegiScan offers a mix of free & paid options you can use to search and track bills in NY and other states. https://legiscan.com/
A prime source of information on federal legislative bills being considered by Congress. https://www.congress.gov/
Many people with rare diseases rely on Medicaid, and MMNY is a great statewide advocate. https://medicaidmattersny.org/
The National Organization of Rare Disorders advocacy action network covers federal & state rare issues. https://rareaction.org/
Every Life Foundation Rare Disease Legislative Advocacy Network covers many federal rare issues. https://everylifefoundation.org/rare-advocates/
The European Rare Disease organization offers insights into international rare disease advocacy. https://www.eurordis.org/rare-disease-week-advocacy-in-action/