Why Is Advocacy Important?

New York State, people with disabilities and their families have rights and opportunities. However, people looking to exercise these rights or access available opportunities must be proactive, and that takes time and effort. Family members of people with disabilities know that you must work to obtain what your family member with a disability and your family need.

Research your rights and where to access the supports, services and opportunities you need and then actively seek out the appropriate officials, state agencies and other organization to obtain the supports for you or your family member. This frequently requires face-to-face meetings, often with people who are busy and overworked. You will sometimes need to be persistent in advocating for what you, your loved one and your family require.

For more information about advocacy efforts in New York State visit the New York Disability Advocates website.

How to be an effective advocate

The videos below provide some tips on how to deliver a compelling message in a brief time when meeting with government officials, medical or educational professionals.
Part 1: Introduction

In New York State, people with disabilities have rights, and access to many supports and services that will help them live as full and active a life, in their communities, as they choose and as they and their families or guardians deem appropriate. However, the system of service delivery is robust and complex. People with disabilities, and their families, must educate themselves about the law and about the system of services available in New York State.

Face-to-face meetings with service coordinators, medical professionals, school administrators, teachers, government bureaucrats, and elected officials are frequent and important events when you have a family member with developmental disabilities. Much can sometimes be accomplished on line or on the telephone, but sometimes in-person meetings are necessary.

In-person meetings with service providers or evaluators are necessary in order to determine the proper level of supports and services an individual needs. There are also times when people with disabilities and their representatives will need to advocate for themselves or their loved one with disabilities.

There will also be times when it will be necessary to educate government bureaucrats and elected officials about issues important to an individual or people with disabilities in general. In the past several years government pressure to reduce funding for programs that support people with disabilities and their families has created long waits for services and limited access to those services. That trend is expected to continue for years to come. Therefore, it is more important than ever for people with disabilities and their families and friends to be informed advocates for the rights and the needs of citizens with disabilities.

Part 2: Getting Prepared

Once you know your options, and the array of services available for people with developmental disabilities, you will often have to work hard to ensure that you, or your loved one, receive what is needed in your particular case. That will entail filling out paperwork, undergoing interviews and assessments and meeting with professionals at points throughout the life of the person with disabilities to create plans and access the proper services.

Assessing needs, developing plans and ensuring that the plans are followed will sometimes require face-to-face meetings. The person with disabilities, their family member or other representative, will need to be informed, prepared and focused to achieve their goals in any in-person meeting or interview.

The techniques presented in this session can be applied in any important or even difficult or contentious meeting. This training will cover a set of useful techniques for these face-to-face meetings, including preparation, storytelling techniques and messaging, message delivery, and answering of questions.

Being prepared for any face-to-face meeting is very important. In person interaction is more effective and more engaging. It is easier to keep another person’s attention and read their facial expressions and body language.

Your personal story is critical for justifying your request and will be more powerful if told in person. You will be able to ask and answer questions without the delay involved in an exchange of emails, phone calls, or letters. Tell your story about your loved one with a disability, what their life is like, how it affects you and your family, the challenges your family has faced and the support and services you and your loved one need in order for them to live as independently as possible.

Prepare your thoughts, in writing, before the meeting. Practice what you want to say and then say it in the same way you practice. Call to action! Be prepared to ask for what you, or your loved one needs to achieve specific goals.

Part 3: Messaging

Messaging is something that you always say, in an opening or closing statement, or in answer to specific questions. It is a tool that will help you stay on point and focused in any meeting or conversation. Messaging should always be written first.

These face-to-face meetings will have time limits. Since each person’s situation is unique, and can be complicated, it is important that you are prepared and focused. Allowing the conversation to drift from the primary purpose of the meeting can lead to an unsatisfactory outcome and reduced independence and opportunity for you or your loved one with disabilities. Messaging follows the rule of 3; a 3 by 3 form.

Prepare exactly 3 messages or assertions or lofty goals/principles, each with 3 or more proof points, facts, statistics, or anecdotes.

Message point #1
My 35-year old son has been waiting for a residential placement for 13 years. That is not acceptable. He deserves, and the law promises him, an appropriate and safe place of his own.

  • He has been offered four placements, all inappropriate for him, in that time
  • We were not offered a residential placement for him until he was 25
  • All four opportunities offered in the past 10 years have been in residences with three people, over 65 who only go out to play Bingo at church or visit the doctor
  • My son volunteers at three non-profits and likes to go out with friends to the movies or to play miniature golf.

Check it for accuracy and understandability by having coworkers, family, and friends review and critique it.

Practice and learn your message so that you can present it without sounding like you are reciting it.

Do not rely on memory; you must have the message points on paper and practice your delivery.

Part 4: Delivering your message

Once prepared and rehearsed, don’t deviate from your messaging during any interview or conversation.

Your answer to any question should relate back to your prepared messaging. (example) Do we have an example for this?

Begin any conversation or interview specifying what you are prepared to discuss, as well as what you cannot or will not discuss.

Respond to most questions by referring back to your prepared messaging. This seems to be the same as the second point.

Answer or acknowledge a question simply, usually in one sentence. Then go immediately back to your messaging.

Example #2
Government bureaucrat or elected official asks: The State can’t give everyone exactly what they want all the time. Why didn’t you just take one of the houses offered?
Answer: Message point #1 He deserves, and the law promises him an appropriate and safe place of his own. You could offer examples of why the houses were not right: Every place he was offered was inappropriate. They were miles from his volunteer jobs and friends, blocks from any public transportation, and the other residents had nothing in common with him.

Flagging Emphasize your key points by introducing them with attention-getting phrases like The key point I want to make or The most important thing I would like you to remember

Repeat repeat your messaging and proof points. I want to say this again because it is very important

Feel free to pause or stop for emphasis after delivering a message point or proof point.

Don’t sweat the small stuff but, if someone you are speaking to makes a significant error, correct it before reverting to your messaging.

Don’t hesitate to say, I don’t know,if you don’t have the information. Politely offer to get the information and call or e-mail the person.