It should come as no surprise that advocacy is a large part of special needs parenting. More times than I can count, I have had to fight for my five-year-old daughter, JJ. I have wrangled with doctors, nurses, surgeons, and pharmacists. Hours have been spent on the phone sorting out paperwork issues or pushing for treatments and medicines. Days, sometimes weeks, have been devoted to appealing insurance denials.
These were not things I wanted to do. They were things I felt I had to do. And, for the most part, the results have been good. We have gotten JJ medications, therapies, and pieces of equipment that are helping her to live her best life. Not only that, but we have avoided many situations we know would have caused her pain and distress.
The fact that I have become an advocate for my disabled child has never shocked me. From the moment we received her diagnosis, I expected to take on this role. Instead, what has surprised me has been just how much my education, financial situation, background, and access to resources have mattered. Because make no mistake, these things have played a big part in all of my successes. Without them, there are many times when I know in my bones I would have failed.
My experiences have taught me that special needs families need access to a few key things in order to be effective advocates for their loved ones. After all, it takes money to hire lawyers, time to prepare appeals, and energy to create convincing arguments. It also helps tremendously if you know how to access and interpret information about medications, treatments, diagnoses, medical equipment, individualized educations plans (IEPs), and the like.
I first became aware of the role these types of resources play in the world of advocacy as the what ifs began to pile up. With the celebration of every win came questions. What if I hadn’t known when to push back? What if I still had my job and didn’t have time to prepare a good insurance appeal? What if I didn’t know how to research treatment options or interpret the latest scientific findings? What if I didn’t have people—attorneys, doctors, knowledgeable friends—I could ask for help? What if I didn’t speak English well?
Unfortunately, there are many special needs families who do not manage to avoid this long list of what ifs. When it comes to navigating complex systems like health care and insurance, many of these people feel at a loss. They have little idea who could help them create appeals or how to push back against decisions that hurt their loved ones. Sometimes they even remain unaware of organizations and non-profits created to help families just like theirs. I often see posts on message boards and social media written by family members like this asking for help.
However, these people aren’t in the worst position one can be in. After all, they were able to recognize an unfair decision or situation and knew to reach out to other parents in their community for help. The parents who worry me the most are the ones we do not see on message boards or comment threads. The ones who quietly accept the letter of denial, the exorbitant hospital bill, or the diagnosis that just doesn’t make sense. These people sometimes don’t even know these are problems that can be solved—if they pushed hard enough and in the right way.
The longer I navigate the complex and fraught path of medical advocacy, the more I see that advocacy is not truly a thing that one does. Instead, it is a frame of mind, a constellation of certain beliefs. You need to believe in your family’s inherent worth. You also have to expect fair and just treatment from others. Most importantly, you need to feel confident enough to push back against high-ranking and powerful people in medical situations and at insurance companies. In short, you have to believe you can fight back in unfair situations and that, when you do, you have a shot at winning.
Unfortunately, not everyone comes from a background where this mindset is cultivated. I am one of the lucky ones who does, which is why I am able to advocate well for my disabled child. I grew up in a middle-class family as the child of two attorneys. When I was young, my mother worked for a non-profit that helped abused women and children before she found a job as a grant writer for a large hospital. As a child, and now as an adult, I never doubted that systems can be unfair and that we can and should fight for ourselves and others. I have been conditioned to believe these things in small, subtle ways over the course of many years.
In my opinion, it’s important for people like me—the ones with a mindset conducive to advocacy and good resources at our disposal—to do our best to help those who don't have these things. Until our health care and insurance systems become fairer and easier to navigate (insert sarcasm here), it is up to us to help each other. After all, we are most successful when we trade ideas, share advice, and give encouragement to one another—be it in online message boards, in-person support groups, or during casual conversation.
This is why I have begun making notes and keeping records every time I persuade an insurance company to overturn a denial or learn about a new medication, treatment, or piece of equipment. It is extremely rewarding when I can share with other families documents and ideas that helped me to be a successful advocate for JJ. By the same measure, I am extremely grateful when other parents do the same for me.
In addition to documents and specific pieces of advice, I have also learned how important it is to offer emotional support to one another. As we caregivers collect denials and bad news, it’s easy for us to become depressed, or even discouraged to the point where we are ready to give up. This is when a word of encouragement from someone else can help to us to stay the course and continue fighting.
Advocacy is something that anyone with a special needs loved one will be doing for years, if not for the rest of their lives. This can feel like a daunting prospect, especially given how exhausting and difficult it can be. But it isn’t all bad. The more time spent in the world of advocacy, the more I have been realizing a reassuring truth: That even though many systems are not set up for us to succeed, this doesn’t mean we’re doomed to failure. I’m also learning how important it is not to travel this road alone. Families can and should work together to achieve our ultimate goal: the very best life for those we love.
What is your experience with advocacy? Do you have any advice or resources to share with others? Let me know in the comments below.