Advocacy Toolkit

Meeting Tips

If you have a meeting with your Supports Coordinator… with your school… with your County or your provider…

Here are some tips to assist in getting what you need.

1.     Keep a separate file just for copies of letters, reports, or other materials you give or receive from the County office, your Supports Coordinator or Provider.  Be sure to print any emails received and save them as well.

2.     Keep a notebook and take notes of any conversations you have regarding any of your concerns, including the date you spoke with the person, their phone number, the person’s name, title and outcome of the discussion. After your conversation, send an email to the person reiterating your conversation.  You will need to verify information and always keep a paper trail.

3.     If the county or agency promises to do something for you, make a note of the person’s name you spoke to or communicated with, the date, what is to be done, and the date by which it is supposed to be completed.  After the meeting, send the decision makers an email summing up your understanding of the agreement, outlined time frame, and next steps.

4.     If you attend a meeting with your Supports coordinator, Provider or representative from your intellectual/developmental disabilities office and you are unsure of being able to discuss the issue alone, take a friend, neighbor or advocate along.  After your meeting, send all involved an email re-capping the meeting, and spell out any follow up expected or required.

5.     If you need to speak to someone about a dispute or problem, contact an advocacy organization in your county. There is a Mediation and Appeal process in place if you disagree with what is offered under the Waiver. Base funding (which can be referred to as a county or state funding) does not have a process in place for disputes. Remember you have the right to apply for Waiver services at any time; no one can deny you that right.

6.     Focus on one issue at a time. Gather and prepare your information.  You can enlist the help of an advocate or other professional to be sure your information is accurate and up to date.

7.     Be mindful that you are advocating for your loved one. Avoid using the term “I need”. Instead always refer to the needs of the person. For example, “John needs…”

8.     When advocating, be assertive without being aggressive. You can be straightforward and still maintain your focus and composure on the issue. It is important to remember that you might have to return and speak with the very people you are talking with today. Choose your words carefully.

9.     Request all decisions in writing. Additionally, assume the decision was made based on a policy, regulation, or procedure. Ask for the source, in writing, so you can better understand and confirm the information.

10.  Remember, your Supports Coordinator cannot make decisions on your request for services, additional services, or changes to your waiver.  You have the right to a decision make by your County Administrative Entity.

11.  Despite all your best efforts, please note that the state limits the number of waivers, and there is limited state funding available to counties, so therefore you could be placed on a Waiting List.

People have benefited and continue to benefit from advocacy and assistance of those in past generations who have worked to achieve systems changes in the intellectual/developmental disabilities (I/DD) system.

Today, new leaders must emerge to assure that supports and services will be available in the future, that they are of the highest quality and that they continue to improve.

We urge you to stand up to lend your support and talents by becoming active in your county advocacy organizations. If you can’t find a group or organization to join, we will help you find one or organize one.

Letter Writing Tips

  • Keep it brief
  • Personalize it, by telling your story
  • Include a photo
  • Enlist their help
  • Be direct but cordial
  • Offer to meet with them
  • Offer your assistance
  • Say “THANK YOU”

SAMPLE LETTER

DATE
The Honorable ___________________
ADDRESS
Harrisburg, PA 17101

Dear (Governor/Secretary/Deputy Secretary Representative/Senator):

I am writing to you because I am very concerned about waiting lists for people with intellectual/developmental disabilities who need community services and supports. The latest figures from the Office of Developmental Programs in March 31, 2020, show that there are 12,640 people waiting for services in Pennsylvania. More alarming is that 5,110 people are in the Emergency category. Waiting Lists are growing at the rate of 150 to 200 people a month. I ask your help by requesting Governor Wolf and your fellow legislators to adequately fund community waiting lists.

Write something personal here.
Are you a self-advocate, a family member, agency person or friend?
Why is this important to you?

People with disabilities need your help. Waiting Lists destroy people’s lives. Please help us end the wait. Please feel free to contact me. I am available to discuss waiting lists with you. I am counting on your support.

Sincerely,

Your Name
Your Address
Your State & Zip code
Your phone Number

Meeting with Your Legislator

Click here to find your legislator.

Would you like to hold a Legislative meeting and don’t know where to begin?

Contact your local parent group, Education Task Force or Arc and ask them to host an evening with your legislators.

  • Gather a few parents and set a date! Host a breakfast. Invite your legislator.
  • Talk to your neighbors and relatives and find out who their legislators are. The chances are excellent you have a variety of legislators you can visit together. Think of the education this will be for both family and friends!
  • Make a short video of some families who are care-giving. Schedule a visit with your legislator and show it! This can be powerful and a real eye-opener for legislators and members of your community.
  • Find out the email, phone and fax numbers of your legislator. Have people do all the above on a certain date at a specific time.
  • Invite your friends and family over to have a letter writing party.
  • Make an Indelible Impression!Get 10-20-30 people or more to all buy a Giant Hershey Kiss. Deliver them at one time with the message, “We’d love for you to end the Waiting List for people with intellectual/developmental disabilities” Don’t forget to include personal letters and signatures.
  • Send balloons! Have them imprinted with “End the Waiting List!”
  • Letters to the Editor of your local newspaper make a tremendous state and community impression. Get other people to agree to write and keep the letters rolling.
  • Find out how many people your local football stadium can hold. See if your stadium numbers match those of the Waiting List or your County. Talk to the editor of your newspaper and see if you can have an article written on the Waiting List that can make those numbers real to people in the community.

Send in your stories to the PA Waiting List Campaign.

Your stories are what move legislators to action!

Volunteer

Helping Us to Spread the Message!

We need you to help us. It is vitally important that we come together on the issue of Waiting Lists. We need people in every town to come forward and help us educate people with disabilities, families and local legislators. We need you to be our eyes and ears. We also need you to make calls, send emails, faxes and contact other people to help. Anything you can do to help is very much appreciated.

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