As a parent of a child with a disability, I have had to learn a whole new language. Because every child has different abilities, I feel like sometimes I’m the only one speaking the language.
Imagine that you have to learn this new language. In your quest to master it, you study 300 different language textbooks giving you vital information as well as web sites/references/links to more vital information. You begin your journey thinking that one day you will pass the exam and know all the words and phrases you need to raise your child. Just when you think you have a handle on everything, you figure out there are several problems: the language vocabulary/rules keep changing, the lessons get harder and harder, and there’s never a final exam.
Recently, I attended a meeting of parents of children with disabilities. Most of the attendees had middle school age or older children, and we met to exchange ideas on issues we all share.
At the meeting, parents of older children shared information with younger parents about legal guardianship. Because 18 is the legal age of maturation no matter what, a parent of a person with an intellectual disability has to become the legal guardian.
When I was faced with this task, I was overwhelmed. I had to hire an attorney who specialized in elder law. Then my son was appointed an attorney to represent him. Next, he was examined and evaluated by a physician, a nurse and a mental health counselor. Finally, we went before the judge who ruled that I was fit to be my son’s guardian. Funny thing -- I’d already had 18 years being in charge of his well-being and no one seemed to care.
Another legal issue parents at the meeting brought up was the special-needs trust. We can’t die and simply leave our child money. We have to set up a special-needs trust to oversee his money and make sure it’s used for certain items he will use in the future. Otherwise, our children would lose all of their benefits granted by the government which include Medicaid and social security.
An imminent concern with everyone, parent or not, is what happens to this aging population when they finish public school. With better medical treatment, people have longer life expectancy, which is great. But what happens to our adults? If they can’t handle a job, do they just sit at home and let their world get smaller and smaller? There is a huge need for more adult day programs where these adults can interact with their peers and role models. In Tallahassee, most of the existing places are at capacity and can’t take more clients.
I don’t consider myself a really smart person, but I’m lucky that over my son’s 28 years, I have been able to figure out most of this new language, but it’s not been an easy program of study. I’ve made mistakes and made many people angry in my insistence of getting what’s best for my son. When he was younger, I remember going up against some state agency to get them to do something for him. I told my son’s school principal about the situation and apologized for being such a bitch. Her response is something I’ll never forget. She said, “You are not a bitch. You are an advocate.”
These parents who met recently are great advocates who are still on their quest to learn this very difficult language and are also eager to tutor those coming after us. We aren't going away.