Compared to many other countries, the situation in the U.S. is very good, in the sense that public schools have to educate all children. This said, the system is also far from perfect and extremely complicated. It is not easy for families to navigate.
What does a family advocate do?
I explain to families the meaning of every piece of paper that comes their way, all the evaluations, school-related documents, forms they have to sign, etc. I explain the purpose and consequences of every step of the process, so they are informed and in control. I attend school meetings with each family and speak for them as needed. I review child’s program to make sure it is appropriate. If the program needs to be modified, I help parents get those changes made. It is often a difficult process.
There is a clinical piece to my work: looking at the child’s profile, recommending steps to clarify it, and offering my professional opinion on the services, methodologies and goals. Each family has its own philosophy about parenting and educating a child with disability. They might be in different places on their journeys when they contact me: some just found out about child’s disability and are starting to think about services. Other families might be stuck in a long-term dispute with the school and need help resolving it. Some parents have been advocating for their own children for years and are emotionally burned out, so they are looking for someone to take over.
There is also a legal piece to my work: helping families understand what schools are mandated to do and what rights their children have. It is very difficult to be rational and reasonable in negotiations about an educational program for one’s own child. The law doesn’t mandate optimal services. It only provides for services that are good enough. Emotionally, it is very hard to agree to your child not getting an intervention, or waiting to get a service, but it can be a part of the process. Special education process works very slowly, and by helping parents see the bigger plan and how we are getting there, I can help them feel reassured and ease some of the emotional burden.
As you were talking, I just realized that you work is not as much about fighting with the schools as it is about being a family’s companion in a very challenging journey…
It’s about both, although I don’t always have to “fight”. I am fortunate to have worked with some stellar school teams and professionals from whom I've learned a lot. But even in well-funded and well-staffed districts, a child’s program and progress can usually be improved.
In cases when districts don’t do the right thing, I do the tough talk and support the parents through the torturous process. Some parents are constantly involved in their chidlren’s education, and they are looking for guidance and expertise to be assured that they are doing all the right things. Yet other families prefer to trust their districts and can’t wait to be done with meetings – even if I think there is more to be done. I have the highest respect for each family’s choice. I am there to tell them what is possible and help them get what they want for their children.