15 Tips for Self-Advocates
It’s no secret that disabled people might need help to reach their goals. This can mean talking to groups that give services to the disabled. It can also mean going to meetings and speaking up for themselves. The following information was organized and retrieved from many online and printed sources. It is information only and is not legal advice about your individual situation.
You are the Most Important Person in the Process. Your voice and your choices matter if you're disabled. Think about what 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 better understand what services, agencies and organizations should be included in your planning process as a disabled person.
Keep Records. Keep copies of documents, assessments, letters and notices in a folder or notebook. You can also take pictures of them so you don't lose anything important. Most agencies have to give you copies of your records if you ask. You can ask for copies of your records anytime. If you talk to someone on the phone, write down their name, job title, and where they work. You can send a letter or email about what you talked about. You can also ask them to send you the information in writing. If you're not sure what records to share, think: Do you agree with what it says about you? Do the records show you need the service? Bring records that help you advocate for yourself to meetings or attach them if you request a meeting. Also keep track of who you gave info to and when.
Ask for What You Need. Many agencies have planning meetings yearly, but you can ask for a meeting or request services anytime. I suggest making the request in writing. Explain what you want to talk about and when you can meet. Send it to who you want to come. You can include a deadline for them to respond that gives them time but also meets your needs.
Primary Language. You have the right to get information in your main language. You can ask for an interpreter who speaks your language, including American Sign Language (ASL). If you have a disability, you can get info in other formats like Large Print, Braille, or other ways. You can ask agencies to give you an interpreter for meetings and documents in your main language or alternative format.
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 disabled people. Disability Rights California, for example, provides advocacy and information about the agencies that provide services to the disabled in California. To view their publications or request assistance you can visit, www.disabilityrightsca.org or call (800) 776-5746. Additionally, many agencies post links to relevant laws on their website. For information about special education in California, see California Department of Education: www.cde.ca.gov. For information about pre-employment transition services and vocational rehabilitation programs, see California Department of Rehabilitation: www.dor.ca.gov.
Prepare. Before a meeting, take time to review documents, assessments, and records. If the agency will share a new assessment at the meeting, ask for a copy before. You can talk to family, friends, teachers, and professionals to help get ready. Make sure who you want at the meeting can come and can make decisions about your services.
Plan. Before the meeting, think about your goals, needs, and what you like. Make an outline of what you want to talk about. If you're asking for a service, make notes on why you need it. Bring documents that support your request like: medical records, assessments, other agencies' records, job market info, and online research. Write down questions so you remember to ask them.
Participate. The meeting focuses on you. Share your goals, abilities, interests, strengths, and challenges. Ask questions, give info, and suggest ideas. If you don't understand something said or written, ask questions. You can ask as many as you need to understand. Share reports, assessments, records, etc. that support your request with the right people or agencies. If you asked for a service or asked a question, listen to their response and what they say. Make sure they answer you. Ask why they decided that. You can ask for their decision in writing. If it's based on a law or policy, ask for a copy. If you need help sharing your thoughts and asking questions, you can request accommodations before or at the meeting. You can also bring someone with you to help you share your ideas.
Be Creative. The planning process should be tailored to you as an individual. This means the services you receive should fit your unique needs and goals. Don't be afraid to encourage others to think about different approaches, especially if what you're currently getting isn't working well for you. There are often multiple ways to accomplish the same objective, so speak up if the current path doesn't make sense for your situation. Bring an open and creative mindset to the discussion - you may need to brainstorm non-traditional solutions. The goal is to find services, supports and strategies that are the right match for your abilities, interests and aspirations. By advocating for an individualized plan, you'll end up with the best results.
Work Together. Each agency and staff member brings unique skills and insights to the table. Be open to hearing their different perspectives and suggestions. Ask them to share information about resources, services, and success stories of other individuals that may be relevant to you. There may be times when there are disagreements among the team. When this happens, redirect the focus back to the common goal that unites you - supporting your growth and success. Remind everyone that you are all there to collaborate and find the best solutions for your situation. Whilst it's important to advocate for what you need, also listen with an open mind. Take in the wisdom that each person contributes based on their background and experience. Finding the right balance between asserting your voice whilst also being receptive to the team will lead to the most positive outcomes. Value the diversity of viewpoints and leverage it to generate creative solutions tailored to you.
Be Assertive Rather than Aggressive. Everyone, especially you, wants the planning process to go well. Be clear about your goals. Ask for explanations of what agencies can and can't do. Sometimes there are disagreements. Keep in mind you'll likely work with these agencies for a while, so it's important to communicate respectfully. State when you disagree. If talking doesn't resolve it and they won't change their mind, you may need to formally challenge the decision rather than keep discussing it. You usually have the right to get denials or disagreements in writing, explaining why your request was denied or information seems incorrect. Ask for the specific law or policy if something is denied or doesn't seem right. You have the right to understand reasons for service denials, changes, or termination.
Your Right to Appeal. The planning process involves bringing together diverse perspectives to find solutions tailored to your unique abilities and goals. Each person offers valuable insights - make space to listen to their expertise while also advocating clearly for what you need. There may be times when disagreements arise or requests are denied. When this happens, stay focused on understanding the rationale behind the decision rather than getting stuck in unproductive debate. Ask questions, request additional information, and document the responses in writing so there is clarity for all parties. Approach conflicts with patience and compromise in mind. These agencies are potential long-term partners in supporting your success. Keep communication open and constructive. If reasonable discussion has occurred and you still fundamentally disagree, you may need to pursue formal appeal options. But in most cases, strive for mutual understanding and creative problem-solving.
Interim Solutions. There may be times when an issue or request doesn't get fully resolved during the initial planning meeting. If this happens, discuss putting a short-term action plan in place that ensures you'll continue receiving the necessary services while the outstanding item gets addressed. For example, if there is disagreement over eligibility for a particular support, the team could agree to provisionally provide that service whilst the details get worked out. This prevents disruption to your care and creates a window to gather more information or initiate any appeal processes. Having an interim plan reduces uncertainty and keeps the momentum going on the broader goals. It shows good faith between you and the agencies as you work through the open item. Make sure to document the temporary arrangements and timeline in writing so everyone is on the same page. Approach unresolved items in a spirit of constructive problem-solving. The goal is determining an acceptable path forward, even if it's transitional. Services should not stop just because of a bump in the road. Be solution-oriented and creative. With good communication and prompt follow-through, lingering issues can get satisfactorily addressed.
Confirm Agreements and Action Items. Before ending the meeting, read your notes about what was agreed on and actions needed. You can ask someone to read them to you. Send a follow-up email or letter to the team about the discussion. This will create a record of the meeting you can keep if you have questions later.
Signing Documents. Read documents fully before signing them. You can take a copy home to review. You don't have to sign at the meeting. You can discuss with family, friends or professionals before signing. If you disagree with something or want changes, ask the agency to modify it first. Only sign what you agree with. Note disagreements on the document or in a cover letter. You have the right to review the whole thing before signing.
Do you have a tip to share that isn’t covered here? Leave a comment below.