Parent Advocacy Kit

The following tips can help parents and OAFCCD members to be effective advocates for children with physical disabilities:

1. Know what you want to happen. Be clear about your goal and what action steps are needed.
2. Prepare a written a profile of your child to take to meetings. Include a photograph to personalize the information. Provide a brief description of all the things your child can do and their achievements. Also provide information on the challenges and barriers that your child faces.
3. Educate your friends and relatives about physical disabilities and your child’s needs. Most people do not know very much about the impact of physical disability or about the effectiveness of rehabilitation services. As taxpayers, your friends can help to advocate for adequate publicly funded services.
4. Share your story with local elected representatives, Council members, School Board Trustees and MPPs. These people are decision makers and it is by hearing your story that they will understand the importance of accessibility and rehabilitation services.
5. Connect with other parents. Talk to each other and listen to each other. Many parents report that they feel better when they share their feelings and find out that someone else has had the same experience and feelings.
6. Present your case politely and positively. Do not play the blame game. Describe what is wrong but focus on the solution and what can be done to fix the problem.
7. Respect the ideas and solutions propose by others. Be prepared to find areas of agreement and consider whether you can compromise on your solution to find an outcome that improves the situation.
8. Be a good listener. Show that you are listening by paying attention to the speaker, looking at them and asking questions if you are not sure what they are saying. Avoid interrupting and let each person finish before you make a response.
9. Be polite and respectful to everyone, even if you don’t agree with what they are saying. Focus on the issues not on the personalities and behaviour of others.
10. Be persistent and continue to put forward your concerns and solutions.
11. Prepare to leave the meeting without a solution. Know when you feel everything has been said and nothing is changing. Stop the meeting and suggest next steps.
12. Ask who else you can speak to and how to contact the person.
13. Keep records of your phone calls, meetings and letters. Make sure you date and include the name of everyone involved.
14. If you feel too emotional, ask for a break or to set another meeting.

• Identify who you are talking to/with on the call. Keep a note of the name, and the date and time of the call.
• Identify yourself and specifically state the purpose of your call.
• Be prepared to offer basic facts about your child which are relevant to the agency you are calling.
• Have records available (with identification numbers, dates, etc.) and encourage immediate action.
• Be goal-orientated. Know exactly what you want. Focus on your goal until it has been achieved.
• Be direct and confident, yet positive and polite.
• If you are not satisfied, ask who else you may speak to about the issue.
• Convey a sense of cooperation. For example; “How can we work with each other?”
• Finish the call by recapping key information and identifying next steps or follow up action.
• Thank the individual for their time and attention to the matter.
• Make notes about the call including key information and next steps that have been identified.
• Send a thank you note or e-mail to recap the conversation and next steps.

Be Informed About What You Need To Know!

1. Your child’s strengths and successes
   • Personality strengths
   • Academic strengths
   • Social strengths
2. Your child’s special needs
   • Is there a diagnosis? Do you understand it?
   • What are your child’s specific problems?
   • What areas are affected by these difficulties?
3. What would help your child or solve the problem
   • sda
   • Is there an existing service that could help your child?
   • Does the program need funding to reduce the waiting list?
   • Are there other ways the service can be improved?
   • Are there problems with transition in or out of the service?
   • Are there eligibility requirements that prevent your child from getting into the program?
   • Do you have suggestions for a new program or change to an existing program that would help your child?
4. How does the system work?
   • Research information about the government and community programs that are available to you and your child.
   • Create a document with the history of your participation in the program (the date you started, what services or supports were received, benefits and challenges of the program).
   • Record the names of key contacts in the program.
5. Deciding on your Goal
   • What do you want to achieve?
   • Is it just about getting a service or support for your child? Or a group of children with similar needs
   • Do you have a plan B or an alternative solution you would accept?
6. Setting the Meeting
   • Identify the person or people you want to meet with.
   • Consider who else could be invited that would be able to provide helpful information.
   • Contact the person you want to meet with and ask for a meeting by calling, writing a letter or sending an e-mail.
   • Be flexible with the date and timing of the meeting.
   • Follow up in writing to confirm the location, date and time of the meeting.
7. Gathering the meeting materials
   • Put a folder together with all of the materials and documents you might need at the meeting.
   • Bring paper and a pen for making notes.
8. Preparing your presentation and questions
   • Put together a written summary of the issues, including the history and the goal of the meeting.
   • Consider whether there should be formal presentation using slides and pictures to illustrate the issues.
   • Make sure there are facilities available, such as a projector and screen, to show your presentation.
9. Take someone with you
   • Decide if you would like an advocate to accompany you, a friend or family member who could take notes or speak for you.
   • Having a friendly face beside you will make the experience less daunting.
10. After the meeting, send a note or e-mail recapping the meeting and next steps.

The most effective letters include the story about your child and how the issue impacts your child and family. To write an effective letter you need to:

• Identify who you are talking to/with on the call. Keep a note of the name, and the date and time of the call.
• Organize the information about your child and the story you want to share.
• Share only the personal information that is relevant to the story, to protect your child and families’ privacy.
• Put the facts in order of when they happened or what is most important.
• If possible, share a photo of your child or a photo to demonstrate the problem (lack of accessibility due to a step or steep slope).
• Personalize the letter by using your child’s name and writing from your personal perspective (I was frustrated because….).
• Identify what action you want the person to take to fix the situation (contact the appropriate Ministry for you, vote on a key decision, change current legislation or introduce new legislation).
• Be polite and clear about your expectations and when you want a response (I look forward to hearing from you by the end of the month).
• Thank the person for considering the request and taking action.

This sample letter on the following page has been developed by Easter Seals Ontario to help you advocate effectively.

• Identify who you are talking to/with on the call. Keep a note of the name, and the date and time of the call.
• Please feel free to edit this letter as necessary and send to your MPP.
• Adding your personal story and the challenges you and your child face will make the letter more powerful.
• Visit https://www.ola.org/en/photo/members-provincial-parliament-mpps to find contact information for all current MPPs.
• If you are sending the letter on behalf of an organization, please use your organization’s letterhead.
• Send a copy of the letter to Easter Seals Ontario, Attn: Alison Morse.

Sample Letter

Your Name
Your Street Address
City, Province Postal Code

Date

Dr./Mr./Ms Jane Doe MPP
Address of MPP
[For MPP addresses see https://www.ola.org/en/photo/members-provincial-parliament-mpps)

Dear Dr./Mr./Ms Jane Doe [if they are MPP] or Dear Minister [if they are a Cabinet Minister]:

I am writing to you as the parent of a child with physical disabilities to find out how you plan to support children and youth with physical disabilities and their families and improve their lives.

I would like to hear how you and your fellow MPPs plan to address the following key issues children with physical disabilities and their families currently face:

• The cost of caring for a child with physical disabilities at home includes thousands of dollars for equipment such as wheelchairs, home and vehicle modifications, accessibility aids, and specialized supports. How will you help me with the extraordinary cost of supporting a child with disabilities?
• The Accessibility for Ontarians with Disabilities Act (AODA) has introduced standards in several areas. However, there is a long way to go in creating an accessible Ontario. Many accessibility barriers still exist within public facilities, including schools, for individuals with physical disabilities. What are you doing to enhance accessibility in Ontario?
• Families are having difficulty accessing rehabilitation services for their children due to inadequate services and long waiting lists. How are you working to enhance rehabilitation services for children and youth with physical disabilities?

I look forward to hearing back from you with respect to what action plans you have to address these issues for children and youth with physical disabilities living in Ontario. Thank you for your time and consideration.

Sincerely,

[Your name and signature]
cc: Easter Seals Ontario, Attn: A Morse, One Concorde Gate, Suite 700, Toronto ON M3C 3N6