When I decided to have children 25 years ago, I had no idea that special education parent advocacy would not only become essential in order to protect my children, but that it would become one of my greatest passions.
My journey began when my first son was diagnosed with a rare, life-limiting brain malformation and continued when my second son was diagnosed with autism. While my experience as a special educator certainly came in handy, there was so much more for me to learn about navigating the world with two children with disabilities.
Whether you’re dealing with school teams or medical professionals, there are basic strategies that can lead you to successful advocacy outcomes.
School advocacy strategies for parents
In the United States, the Individuals with Disabilities Education Act (IDEA) is the federal law detailing the educational rights of students with disabilities. How the law is interpreted and carried out can vary from state to state, but an unwavering right granted by IDEA is that parents are an equal member of a school team.
It’s common for parents to be overwhelmed and intimidated when they show up for a school meeting and are faced with a room full of educational experts. It’s easy to lose a sense of your own worth. Parents have unique knowledge about their children. You’re there to share your insight. See yourself as an equal. Present yourself as an equal. Arrive ready to learn from each individual team member and with the knowledge that you’re the one in the room who spends the most amount of time with your child.
While school professionals are typically ready to explain how they comply with IDEA as it pertains to your child’s needs, I strongly believe it’s important to educate yourself on all things related to your child’s needs. Appreciate others’ expertise, but don’t accept it blindly. Do your own research and be sure to use reliable sources.
While the law gives students and parents certain protections, when a parent needs to exercise their right to disagree and go through due process, the odds are in the district’s favor. A good way to avoid litigation is to create a relationship with your child’s teachers and therapists that welcomes communication and feedback throughout the year, not just once a year at the individualized education program meeting. If you don’t understand something, ask questions. Keep up an ongoing dialogue.
Avoid an “Us against Them” mentality because it only breeds a defensive relationship focused on winning and losing battles. The goal is to advocate for educational needs based on knowledge and data.
In the world of special education, I have seen parents get labeled as “difficult.” It’s possible to disagree with a school team without breaking the positive relationships you’ve built. The goal is to always be the person they’ll want to do business with. Stay calm. Be professional. Strategize.
Document everything. If it’s not written, it never happened, so if you have a conversation with a team member, send a follow-up email documenting your understanding of the conversation. Memory is unreliable. You’re creating a written history of your child’s education. Factual data will always help you strategize.
Medical advocacy strategies for parents
I approach doctors the same way I approach educators. Doctors have expertise I don’t, and I have knowledge about my children that doctors don’t. This is a collaboration, and I’m looking for doctors to teach me and supplement the knowledge I have about my children’s diagnoses.
If your child has complex medical needs, create a document that details all the pertinent information, including diagnosis, medications, hospitalizations, important test results, and contact information for all specialists involved in their care. Keep a copy with you at all times. This summarization of your child’s medical conditions will come in handy at new doctor appointments, ER visits, and hospitalizations. This gives you the ability to focus on your child’s needs and frees you to advocate for them instead of being distracted with the dozens of questions medical personnel will need to ask.
If your insurance and location allow, be picky about your child’s medical team. My older son’s life depends on physicians who will listen, are easy to contact, and who respect my family. I work to build a professional relationship with clear expectations set up from the first visit. If I don’t think that doctor will meet my child’s needs or doesn’t treat us with dignity, I am going to find a new doctor. When possible, get referrals from doctors you trust. Chances are good that they will send you to doctors who will get along with you.
Prior to appointments, write down all your questions. If possible, bring another adult with you so they can take notes. It’s not always easy to take care of your child and manage new medical information. If you don’t have someone to go with you, ask the doctor to write out answers and instructions. Establish a way to relay additional questions afterwards. Do they prefer the use of a portal, email, or phone calls?
Get familiar with the staff. Know the go-to person for paperwork, prescriptions, scheduling, etc. Building a mutually respectful relationship with the key players in the doctor’s office will improve your ability to get your child’s needs met.
More advocacy tips
When you’ve experienced positive collaboration with school teams and medical professionals, gratitude and acknowledgment go a long way. If, on the other hand, your advocacy efforts are hitting a brick wall, seek to find the person with the most sympathetic ear who can affect the change you’re looking to make, and do everything you can to partner with that person so it’s easy for them to help you. Collaboration and mutual respect are an advocate’s goal.
The journey can be exhausting, so make connections with other parents with similar circumstances. They will be there to remind you that you are more than capable and that you’re not alone.
