When I started writing this blog, Wonder Boy had long since been approved for services through our state’s Office for People with Developmental Disabilities (OPWDD). When we first applied for them, he was maybe 4 years old, and we really didn’t know anything about what services we’d get/want/need and we definitely didn’t fully understand the process.
The first thing to know is that at least in our state (and I suspect in all states), some of the supports from the state are funded by Family Support Services (FSS). In our case there are certain programs such as respite reimbursement which are funded through state FSS funding. These programs are accessible once you’ve been approved by OPWDD. Then there are “Medicaid Waiver” services such as community hab and day hab- these are funded by Medicaid money, and the “waiver” means that they waive the parents’ income when processing the Medicaid application. Mind you, you still have to fill out the application (I recommend having help for all of these steps, by the way), and then you have to wait, even though a person’s disability should theoretically be enough to have it approved right away. Wonder Boy’s Medicaid application sat on a desk for four months.
Getting approved for FSS or Waiver services is another matter- in the case of Wonder Boy, it meant that all the reports from the doctors and his school and his Early Intervention (EI) team all had to be submitted. Then, because of his young age, we had to drive an hour away to meet someone who would determine once and for all if he should get these services. Then once they decided to give him provisional eligibility, we had to go through the process of selecting a Medicaid Service Coordinator (MSC). This person helps families put together the supports they will need over the years. Because of how closely this person will work with a family, it’s important that this be a positive working relationship. You can always switch to a different MSC if the relationship is not working out.
A lot of these little details were lost in the recesses of my mind, because our lives are so incredibly chaotic. So we fast-forward to present day, as we go through the process all over again with Speedy. This time things are moving a little faster- in part because I know what to expect, but also because he’s an older child and therefore we have more data from the school to show them. Between school data, medical records, and the Adaptive Assessment that we were required to complete, we had everything they needed. The Adaptive Assessment is a test filled out by us and by his teacher, and then scored by the school psychologist. It shows his strengths and deficits in basically all areas of his life.
Yesterday, I received the phone call that he was deemed eligible. Now we move to the stage of determining what services he needs. Then that request will need to be approved by a committee. THEN we will need to select an MSC, and THEN we can apply for Medicaid Waiver services.
The hurdles are many, and the process can really be challenging. Yesterday I was finally able to breathe for the first time in months. And then we’ll get over the next set of hurdles, and the next, and the next…..
It’s about setting them up for what they’ll need for the rest of their lives. And it’s hard. Believe me, I know. And it’s really really worth it.