We Did Everything Right. The System Didn’t.
I knew from the beginning raising Jeremy and getting him the services he needed - services he was entitled to - was not going to be easy. People pretend, politicians lie, and families know: the disabled community is nothing more than an afterthought. We're the unfortunate casualties of budget cuts and other priorities that always bump us. Enforcement is non-existent. We think of these things happening in the context of news stories, or anecdotes. Unfortunately for me, they're our reality.
For over a year we've been working with the agency that is meant to connect us to services. We were assigned a Coordinator of Community Services (CCS), and in true Lisette fashion I was on it. We met, we talked about goals, I asked ALL the questions. I started a file. I listened. I was ready to work with our new partner to ensure Jeremy would be set once his graduation from MCPS came. I was 7 months ahead of time. We were set!
Except, we weren't. In March I started to push for planning, I knew the waiting period was long so I'd planned for Jeremy to be in camp for a month, asked for a flexible work schedule with an additional day at home and signed him for up for activities. Why? By 21, people with disabilities are on their own, there's less options through local Recreation departments, and when they are available, they're either too far or in the middle of the day. For this Winter Season, the county offered a total 48 Therapeutic Recreation classes, but only 22 are for adults. Of those 22, just 7 are offered in Upcounty centers near us - less than a third of adult offerings. When your choices are that limited, every day matters. When August rolled around I still hadn't heard anything I began to get very nervous. I took it upon myself to start calling agencies, to research, to coordinate the services my son needed. Quite ironic when this agency is literally billing the state to get paid for this work.
I was successful. I found an agency to provide care. We got the interviews. We filled out the paperwork. We interviewed personal supports candidates. This was it - by February we were going to have everything in place.
Then two weeks ago I found out that our CCS had not submitted our PCP - the one piece that is supposed to put us on track to get services. My world came tumbling down. I called the agency. I called the state. There was nothing they could do - the process was never started. Some of the assessments were out of date and needed to be filled out again. I demanded answers and wanted someone to be held accountable. When a CCS fails to submit required paperwork for a year, there should be immediate notification, supervisor review, something. Instead, there's nothing. I cried and yelled and explained what the last 4 months have been for us: my joyful, kind, happy kid who loves being around people and staying active has become withdrawn, angry, irritable. He's depressed and on edge. He's tired of being home. He reminds me every day what we already know: we're nobody's priority.
So here we are. I'm piece-mealing his care in the best way I can. And I'm paying for all of it out of pocket. As I try to learn and advocate for more options and support, I'm learning what else is out there. I'm constantly finding heartbreak as I come across new limitations, barriers, and lack of interest. I am angry at the fact that our community is constantly collateral to poor policy choices that benefit a small group.
As I face the new reality of the next few months, I can't help but feel so much guilt for being able to afford some choices, to have a job where I can take meetings from anywhere, and the will and energy to fight this fight that is neverending. But I am human after all, and this is taking a toll on my mental health, and a toll in our family. My ask is for people to learn more about how budget cuts and oversight failures by elected officials impact those most vulnerable - and to demand better when they vote and advocate. There is a lot on the line - and at the core of it are people's real lives.
