The title of this post is misleading. It was my experience that there was no centralized source of information to guide parents to the services that they needed. If there is now, I still don't know about it. That is the primary reason that I am writing now. Privacy regulations, while protecting the privacy of children and their families, also prevents parents of disabled children from finding each other, talking to each other and sharing important information.
When I finally tapped into the respite services after V's stay at KKI, the agencies involved were shocked that they had not heard of V years earlier because of the intensity of her needs. They could hardly imagine that I had made it on my own with her for so long.
You would think that, at the point that a child is identified as having a disability, they would be assigned to the case of a social worker, or someone who would direct them as to who to call to arrange necessary resources and supports. You might think that contact names and phone numbers would be provided. It could have happened when Child Find made the identification. It didn't. It could have happened through the pediatrician when he became aware of the severity of V's disability, but it didn't. It could have happened through the school system, because of the special education services that V received there, but it didn't. Most of what I found for V was found by accident or by dogged determination to solve a problem. But, a parent can't look for something that they don't even know exists.
I don't believe that the pediatricians or special education teachers are informed about these resources. They are concerned with their particular role in the life a child. If they had the knowledge, I believe they would share it when appropriate.
What would help a parent in my position? It would have helped if special education teachers and pediatricians were provided with a list of resource contact names and phone numbers that they could share with parents, early in the life of a disabled child. What did I need to know? I needed to know that respite services were available and how to access them. I needed to know the name of a dentist who had experience and the desire to work people with developmental disabilities. The name of a pediatrician or general practitioner with expertise in the area of developmental disabilities, a neurologist, and eventually when my daughter became a young woman, a doctor who could address those issues who understood that examinations might be difficult at best. I could have used contacts to help me make my home safer and to make transportation safer. I could go on and on, but you get the idea. Now, since Maryland has the Autism Waiver for school age children, parents can receive a list of respite care providers and contractors that can address some home safety or accessibility issues. However, try to call those contractors and good luck getting anyone to answer or return phone calls. When V was covered by that waiver, I tried again and again without any success at all.
I have thought for years about how the necessary information could be disseminated to the people who need it most. What office or agency could take the lead on this effort. Anyone out there who has a thought about this, please post your comments.
Raising a disabled child can be an isolating experience in certain ways. Friends and family who are raising normal children have their issues, but they are different issues. They would help if they could, but for the most part don't know how. Even other parents of disabled children have different concerns because no two disabled children have the same needs or abilities.
I would tell another parent to be an advocate for their child. Don't be intimidated by professionals and don't worry about being liked or being easy to work with. I don't mean that anyone should be rude or unpleasant. I mean that parents need to ask lots of questions until they fully understand what doctors and teachers are saying and why they make the recommendations that they do. Contribute your views and your knowledge of your child and argue strongly for the things that you believe, but be prepared to back up your position. An informed, involved and articulate parent will be listened to.
