Last week, I received the long awaited letter from the DDSO about my son's medicaid waiver application. Basically, the letter stated my son is now eligible to "begin" applying for OPWDD services. To me, it was one of the same - he qualified for the medicaid waiver. I fire off an email to the intake worker telling her how excited I am for my son and how do I go about getting services for my child? Quick response: Ahhhhh, wait a minute. Do you hear the sound of a screeching halt?
One email leads to another to learn I need the assistance of a Medicaid Services Coordinator (MSC) to begin the process to determine eligibility of services such as respite and recreational programs. However, first I need to have medicaid for my son. Well, I have medicaid for him and have had it for him for the past several years. In fact, when I submitted my entire packet for the waiver which is equivalent to a dossier, I voluntarily provided proof of the medicaid. Why didn't the letter from DDSO indicate the need for an MSC as the next step in the process? And, further, why didn't it automatically include a listing of MSC's to select from? That would've been so much easier and far less confusing.
Although there are layers upon layers to navigating this system, things are made far more complicated than it should be. In fact, when I received medicaid for my son, why was I not given information of the waiver system to make an application for my son? Why are these agencies not working in concert with each other? All of the agencies are state funded yet there is a gross lack of orchestration that in theory could make things easier and more manageable if each were communicating with the other.
“The single biggest problem in communication is the illusion that it has taken place.”
~ George Bernard Shaw
Finally, I connected with a potential MSC. She was very helpful and persistent. In fact, although I have the letter stating my son is now "eligible" to apply for the OPWDD services, she insisted I didn't have all my ducks in a row yet. She did initiate contact with the intake worker at the DDSO to discover that yes, I am eligible to recruit the services of an MSC! Oh my goodness! For a couple of hours, I was on an emotional roller coaster ride. One would think by now, I would be used to it - that it's just par for the course because nothing about these systems were made to be easy. I told my potential MSC, that it should be straight forward like following a recipe. First you do A, followed by B and then C and so on and so forth. "Oh, no... this is government and governments don't flow in a systematic manner." Of course, I have to admit I might have confused some caseworkers because I had the medicaid piece in place. Sort of like putting the old cart before the horse type of thing. If things were only explained to me, I would've followed protocol but in truth, my son was always eligible for the medicaid because of his disability. I pursued what I considered what he needed without having knowledge of all the other related pieces and systems - whew! It has been a long, up hill road to climb but I'm getting there step by step.
So now I wait to begin this new process and hope my son will receive the services he needs as we work toward self determination for him. He is only 12 but the process began yesterday - that day long ago when we learned beyond a doubt he has a developmental disability. The goal is for him to be the captain of his own ship as he will need to ultimately learn to navigate these waters that often do not run smoothly and can be down right confusing.
"We are taught to be ashamed of confusion, anger, fear and sadness, and to me they are of equal value as happiness, excitement and inspiration." ~ Alanis Morissette