“We Are Not Alone” Wednesday: Advocating without losing your sanity

Before we had disabled kids ourselves, my wife and I knew a couple who had multiple children with disabilities. After having one of their own, they made the brave and noble decision to adopt more. By the time I met them, their youngest were teenagers. And that noble decision had become an angry lifestyle.

After years of working to gain the best advantages for their kids –standing up for rights and fighting systems– this kind, loving couple had developed a stance of “us against the world.” They were ready to do battle at every turn. It must have been exhausting for them, and it certainly wasn’t pleasant for others around them.

They were like warriors… come to think of it, you might consider it a type of PTSD. So accustomed to fighting through red tape, they saw every question, concern or problem as an obstacle to be blasted through. I can only imagine what it must have been like to be their caseworker or teacher.

Once our daughters’ disabilities manifested, we made it our goal to advocate and facilitate for them to the best of our ability without becoming that angry couple… or to be fair to them (because we’ve met many like them), without developing that assumption that everyone stood against us.

Our children are nearly adults now, and we’ve run into all kinds of issues. But those issues aren’t all alike and they don’t require the same approach. Sometimes, we run into burned out workers, other times incompetence, sometimes arrogance, many times bureaucratic stupidity, and one time, we actually did find ourselves in a situation where the the personnel involved stood in opposition to the right assistance for our child.

Any time we find ourselves beating our heads against a brick wall, we start by asking which type of situation it is. By far, the most common is burnout or bureaucracy. The vast majority of people we work with actually got into the field because they have a passion for helping disabled kids. They run into the same ugly, stupid bureaucracy we do… multiple times for multiple kids. If you approach them ready for battle, that’s what you’ll get. Because you’ve put them in a no-win situation. But if you can see them as a partner (because, after all, they HAVE run into this with all their other clients, too) you can work together and in many cases produce a far greater outcome… with minimal stress. Most of the time, your caseworker isn’t really your enemy.

Sometimes, it’s about learning the bureaucracy. For example, most people will tell you that the process for SSI is slow and painful and usually results in multiple denials before approval. We found out that the bottleneck in most of those situations was actually the medical reports from the doctors not getting attached to the file in the Social Security office before the arbitrary deadline. So we ignored the instructions from the Social Security Administration and brought our children’s medical records to the initial meeting. We got our kids into the system in record time, the first try.

Another time, we had an arrogant therapist, who thought that her advanced degree made her the better person to decide what our preschooler needed. In that case, I did get firm. I told her that I understood where she was coming from, but that our focus for the therapy was not the same as hers. I insisted that we would not follow through on her work at home and would work to have our daughter connected with a more cooperative therapist. Once I explained our thinking and she could see I’d done my homework, she became a partner rather than a dictator.

Finally, we came up against a school administrator who was trying to save the district money by refusing our daughter services. At first, we worked along with them. But once it became apparent that the one individual in question had been deceiving and manipulating, we went over her head to her supervisor. Sharing what we knew about the deception and declaring our intent to hire an attorney was all that it took. The situation was rectified within days.

If we’d started out in fight mode and threatening attorneys in all of those other situations, we probably would be angry bitter people now and we’d have had to actually have attorneys on retainer, while creating such an adversarial atmosphere that it damaged our children’s wellbeing.

Now, we’re making the transition from children’s services to adult services… with all the same issues. In almost every situation, we’ve achieved the best possible services for our kids, without making enemies or becoming bitter ourselves.

So here’s my advice for getting the best outcomes for your disabled child. Start by doing your research. Then remember that most of the people you encounter really want to do the right thing, and are as frustrated as you are with the bureaucracy. Find an advocate within the system to help you walk through the process. And if all else fails, prepare for a legal battle.

By following that approach for the past twenty years, we’ve maintained our sanity… and our humanity.