We Finally Got THE Call.
A month ago, I relayed our harrowing experience with disability services. I was desperate, angry, and hurting for my kid. I could not understand how we'd done everything right and had found ourselves in a position where we still could not get the services we were entitled to, due to someone else's neglect. Here's recap of what our lives have been like since January 22nd:
Week of January 26th - after finding out we had been lied to and betrayed, and that after nearly 15 months we'd been working with the organization I met with our case worker. He never explained what happened. Said sorry a few times. That same day, I called everyone on the DDA list until I got a hold of the Director. It was game on.
Week of February 9th - Research. Contacted all the people I knew who had experience with disability services. I made calls, I wrote emails - I went on social media and signed up for advocacy day in Annapolis.
Week of February 16th - met with the team. EVERYONE. State DDA, check. Leadership from the nonprofit that failed us, check. Allies, check. Came with receipts. Made our case and let them know we were not going to take no for an answer. The apologies kept on coming, the excuses were endless.
Week of February 23rd - We went to Annapolis! Jeremy talked about the importance of preserving funding for independent living and his challenges getting a job because employers don't feel they can trust people with disabilities to do the work. I connected with DDA leaders and pitched my idea of developing legislation to hold nonprofits to the same standards their agency is held to - and to have a system for the public to see, in real time, the performance of the nonprofits. I also got access to all the notes this worker made about our case. I was livid.
Week of March 2nd - Our plan was submitted - yay! I started calling the eligibility unit, the department that would determine if Jeremy was eligible for funding. This was the last step, it was also the one that would take the longest. I was told it could be 3-9 months. I called every number I could find. I finally ended up speaking to someone who investigates and hears out grievances. He heard my story and couldn't believe our odyssey. By this time, I'd also started getting help from someone, we'd spent a lot of money to get him into activities, and we were slowly losing our minds because his emotional health kept declining.
March 12th - We got THE call! I was going through my list of to-dos, the people to call, the emails to write. My phone rang and I got the news Jeremy's eligibility was approved and he was ready to receive services. Seven long weeks later - and it was finally over. I only had 4 minutes to cry and celebrate because I had back to back meetings at work.
Like everything in my life, when someone tells me it can't happen, we can't do it, we will not succeed, I do not listen. It doesn't matter how hard, it doesn't matter how long - I will fight. This was not supposed to be this hard. It shouldn't have taken this long. Every time I called I thought about the hundreds of families that have fallen through the cracks. The many individuals who accept this as the norm. I've cried more times than I count over the last two months. I've replayed every single conversation and I've blamed myself for maybe being unlikeable, strict and overly distrusting. The system doesn't make it easy for us, and somehow even after all this I still believe I can make a little bit of a difference because I don't ever want anyone to go through what we did.
So here we go - we can breathe a sigh of relief, but come next week, the fight continues because there is much work to do.
