This month, we are discussing all kinds of advocacy, which includes self-advocacy. To be a self-advocate means to understand your needs and speak up for them until you get what you need. Sometimes, this can be intimidating, like if you’re talking to a doctor or your boss about an unmet need or accommodation. Self-advocacy can also be difficult if you do not understand your rights and what are reasonable accommodations.
This article can help anyone learn to self-advocate! First, we will explain why learning how to self-advocate for yourself or your loved one in healthcare, at school and work are all important. We will then explain how to self-advocate, with some tips from experts on the topic.
Self-Advocacy in Healthcare
Healthcare self-advocacy is vitally important, making it more likely that you or your loved one will get the proper care needed to overcome various health challenges.
Self-advocacy Tips for the Doctor’s Office:
- Share important medical details like your/your family’s medical history and allergies. This helps your doctors prepare treatments that take these details into account.
- Do not hide any medical information from your doctors, no matter how unimportant or uncomfortable it might seem to you. The more information they have, the more likely they can accurately diagnose your or your loved one’s condition and provide better treatment.
- Keep a hard copy of your medical summary whenever you visit any of your doctors, and keep it updated. Help your doctors avoid making errors by ensuring they have all of the updated information. Resources like our Patient Handbook can help you keep all your medical info in a safe place that is easy to carry. Many medical providers also have online patient portals which store your medical history and treatment.
- Know your or your loved one’s current medical treatments in detail. This helps your doctors make changes to medical treatments accordingly, depending on how effective the current treatments are.
- Review the patient’s bill of rights here. This helps you remember what you can advocate for whenever you or your loved one are/is being medically treated.
- If you can, bring a friend with you to your medical visits. They can help write down information or talk about it with you afterwards, making the visit less stressful for you.
- Tell your doctors to write your treatment and diagnosis information down.
- Don’t be afraid to ask questions, especially if you’re confused. This is especially important with new treatments, prescriptions, or what other explanations your doctor may have for a medical issue.
- Have a follow-up plan of whom and where you or your loved one should go to next for further treatment or for a second opinion.
- Hire an independent patient advocate and have them teach you advocacy skills.
Self-advocacy in School
Advocating here is important because a strong academic foundation builds the blocks for life. There are often many available supports and accommodations, so be prepared to access those that your child requires.
Self-advocacy Tips for School
- Learn about the ADA to know if you or your loved one qualifies as a person with a disability and what your rights are.
- Research what an IEP is. Learn what rights you or your loved one might have when discussing accommodations with school administrators, one’s teachers, aides, etc.
- Understand what a 504 education plan is and what resources you or your loved one may be eligible for to improve the educational experience.
- Learn about what IDEA is and what resources it offers that can positively affect you or your loved one’s academic abilities.
- If she’s old enough, teach your loved one about these laws and how they apply to her medical challenges. Also, if you think she’s old enough, teach her how she can advocate for herself. Ask her questions that can help her solve challenges that are affecting her education.
- Encourage your loved one to join groups with people who have challenges like hers. You can also join advocacy groups related to her health challenges.
- In school, talk with teachers about your health condition, how it affects your learning, and how they can help you learn better. Teach your loved one how to talk with her teachers and others about their health condition, and when.
- If you’re applying for college, know what accommodations you need to excel in your studies and consider that when making college selections. Don’t be afraid to ask questions. If your loved one is applying, help her with the application process.
- Learn how to transition through life stages and changes, or teach your loved one how to transition.
- Educate yourself or your loved one on how to stay safe and healthy, despite health challenges, and how to develop skills to be more independent.
Self-advocacy at Work
Another area where it is important to learn how to advocate is the workplace. Self-advocacy in the workplace can open-up opportunities and ensure that your desires and needs are heard.
Self-advocacy Tips for Work
- Set goals. Figure out how you can reach these goals, and when. Be specific.
- Plan for these goals, keeping your strengths and weaknesses in mind. Make sure your goals are realistic and attainable; you don’t have to conquer the world all at once!
- Be confident in yourself that you can achieve your goals. If you don’t believe in yourself, your supervisors and coworkers might not, either.
- Once you are done planning and gain your confidence, research resources that can help you succeed. Also, network with colleagues who have been successful.
- Look for opportunities at work to grow your experience, skills, and reputation.
- Talk with your managers about your goals, and explain how they can benefit them and their organization. Tell them how you can help them and how they can help you also. When you do, be calm, direct, and to the point.
- When you accomplish something, especially something to do with your goals, don’t be afraid to talk about it at work. Be confident but not boastful.
- When applying for a job, if you are afraid that you will not be able to do the job’s crucial tasks or do the application process because of medical issues, let your employer know so they are able to accommodate you if they are able to without causing a hardship to their business.
- If you ever feel like your employer is discriminating against you because of your health challenges, first try to talk it out with them via mediation or negotiation to check that it is not a misunderstanding that is causing you to think that they are discriminating against you.
- If you have talked to your employer and still feel that they are discriminating against you or a loved one due to a disability or the assumption of a disability, call the U.S. Equal Employment Opportunity Commission (EEOC) as soon as possible. They will ask you for as many details about the potential discrimination as possible and help you figure out what to do next. Employment discrimination due to a disability or other protected classes is illegal!
- Research the EEOC’s website and resources to learn more about your disability rights and how to handle discrimination.
- Teach your loved one from an early age about setting and planning goals, cooperating with others, and other “soft” skills that will help them in the workplace.
It is crucial to advocate for yourself or your loved one in the above environments. These are just some of the ways to do so.
This article was written by Elizabeth (Liz) Rivera, Turner Syndrome Foundation intern and blog writer.