15 Tips for Self-Advocates
You may need services and supports to reach your goals. This means you may be communicating with agencies and systems that offer services to people with disabilities. It can also mean attending meetings and advocating for yourself. Self-advocacy can begin at any age.
This fact sheet includes tips to help you prepare for meetings, develop a service plan, and resolve conflicts that may arise in the process.
1. You are the Most Important Person in the Process
Your voice and your choices matter. Think about want you want. What are your goals? Where are you now? What would it take to achieve those goals? Once you have answered these questions, you will be better able to understand what services, agencies and organizations should be included in your planning process.
2. Keep Records
Keep copies of documents, assessments, letters and notices. You can keep them in a folder or notebook. You may even scan or take pictures of documents so that your important papers don’t get lost.
Most agencies are legally required to provide you with copies of your records. If you need records that you do not have, you may ask for copies of your records at any time.
If you speak to someone over the phone, write down the name and title of the person that you spoke to and the agency they work for. You can send a letter or e-mail about the conversation you had and the information they shared with you. You can also ask them to send you the information in a letter or by e-mail.
If you are not sure what records are helpful to share with an agency, think about: Do you agree with what the record says about you? Do the records help to show that you need the service(s) you are asking for? If you have records that will help you in your self-advocacy efforts, take them with you to the meeting or attach them to your meeting request. It is also important to keep a record of who you gave information to, when and what you gave them.
3. Ask for What You Need
Although many agencies have planning meetings annually, you can ask for a meeting or request services at any time. We suggest that you make your request in writing and explain what you would like to talk about at the meeting. It may be helpful to include in your request when you are available to meet. You should send the request to the people that you would like to come to your meeting. You can also include a reasonable deadline by which you would like the agency to respond to your request. A reasonable deadline should allow the agency enough time to consider your request and should meet your needs.
4. Primary Language
You have the right to receive information in your primary language. You have the right to request an interpreter in your primary language, including American Sign Language (ASL). If you have a disability, you have the right to receive information in alternative formats such as, Large Print, Braille, or other formats. You can ask the agencies to provide an interpreter for meetings and/or for documents in your primary language or in an alternative format.
5. Know Your Rights
There are many different agencies that assist people with disabilities. Some people need services from many different agencies. Other people may only need services from one or two.
Each agency may have different laws, policies and procedures that govern who they serve, what type of services they provide and what their process is for providing services to people with disabilities. Disability Rights California provides advocacy and information about the agencies that provide services to people with disabilities in California. To view our publications or request assistance please visit, www.disabilityrightsca.org or call (800) 776-5746.
Many agencies post links to relevant laws on their website. For information about special education, see California Department of Education: www.cde.ca.gov. For information about services for people with intellectual or developmental disabilities/Regional Center services, see California Department of Developmental Services: www.dds.ca.gov. For information about pre-employment transition services and vocational rehabilitation programs see California Department of Rehabilitation: www.dor.ca.gov.
Before a meeting, give yourself time to look over documents, assessments and records. If the agency you are meeting with will be sharing a new assessment or report with you at the meeting, you can ask for a copy ahead of time. You may choose to talk with family members, friends, teachers and professionals to help you prepare. Make sure the people you want to be at your meeting will be there and that they have the ability to make decisions about your services.
Before the meeting, think about your goals, needs and preferences. Make an outline of things you would like to talk about at the meeting. If you are asking for a service, it may also be helpful to make notes about why you think you need the service. You can bring documents with you that help to support your request. For example: medical records, assessments, records from other agencies, labor market information and online research. You may also write down a list of questions you have to make sure that you remember to ask them at the meeting.
You are the focus of the meeting. It is important that you share information about your goals, abilities, interests, capabilities and challenges. At the meeting, be sure to ask questions, share information and propose ideas. If you do not understand what is being said or what is given to you in writing, ask questions. You have the right to ask as many questions as you need to in order to clearly understand what is happening. If you have information, reports, assessments, or records that help support your request, it is important that you share the information with the relevant people or agencies.
If you have asked for a service or asked a question, listen to the other party’s response and what they have to say. Make sure they answer your questions. Ask for the reason for their decision. You may ask them to explain their decision in writing. If the decision is based on a law, policy or procedure, you can ask for a copy.
If you need help or accommodations in order to share your thoughts and ask questions, you can ask for help ahead of time or at the meeting. You may also bring someone from your circle of support with you to the meeting if you need help sharing your ideas.
9. Be Creative
The planning process should be individualized. This means your services should be right for you. Encourage others to explore different ways of doing things, especially if the current way is not working for you.
10. Work Together
Each agency and staff person have different skills and knowledge to share. Be willing to listen to their perspectives and ideas. Ask about resources, services and success stories of other people. Where there are disagreements, remind the team of the common goal – supporting your success.
11. Be Assertive Rather than Aggressive
Everyone, especially you, are invested in the planning process. Be clear about what you want. Ask for clarification about what the agencies can and cannot do.
Sometimes reasonable minds disagree. In deciding how you want to address disagreements, keep in mind that you will most likely have a long relationship with the agencies providing services. It’s important to say when you disagree. If you find that talking about the disagreement is not helping to solve the problem or the agencies are not changing their mind, you may decide to challenge the decision rather than continue the discussion.
In most cases, you have the right to receive a written notice or a letter explaining the reason a request has been denied. If something you ask for is denied or if information shared at the meeting does not seem right to you, ask for a copy of the law or policy that the agency is using to support its decision. You have the right to know why you are being denied a service, why there are changes in your services or why your services have stopped.
12. Your Right to Appeal
You have the right to challenge a decision if you disagree. You have the right to ask what the process is for challenging a decision you disagree with. You have the right to have that information provided to you in writing. Most appeal processes have timelines related to how much time you have to challenge a decision. Make sure you understand what the process and timelines are if you plan to challenge the decision.
13. Interim Solutions
You may have an issue or request that cannot be resolved at the meeting. If this happens, talk about making a short-term plan of action that ensures that you will have the services you need while the issue is being resolved.
14. Confirm Agreements and Action Items
Before the close of the meeting, read back your notes about the agreements and action items you have discussed to make sure everyone has the same understanding of the meeting. You can also ask the agency to read them to you. You may send a follow-up email or letter to the team about what you discussed at the meeting. This will help you create a record of your meeting that you can keep if you have questions later on.
15. Signing Documents
Be sure to read documents before you sign them. You have the right to review the whole document before you sign. You do not have to sign a plan or other documents at the meeting. You can ask to take a copy home with you. You may think about discussing the document with your family, friends or professionals before you sign. If you disagree with a document or would like to make changes to it, you can ask the agency to make changes before you sign. Sign only what you agree to and make a note of what you disagree with on the same document or in a cover letter that you attach to the document.
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