There is no school or adult day center in my local community for adults with special needs. However, there is a school in a neighboring state which serves adults and children with intellectual disabilities. The school has been around for a long time and has a good reputation.
I first visited the school a few years before. Jessica’s teacher took me on a tour. Part of the tour included the vocational program. Not only was it the first time I had seen that large of a group of ADULTS with intellectual disabilities, I was also seeing them in a sheltered workshop. I was seeing an extremely broad range of abilities/disabilities as well as the spectrum of ages. As much as I hate to admit it and feel like it’s a terrible thing, by the time I left the facility, I felt physically ill. My feelings confused me. How could I feel this way? I felt dismay. I was witnessing this from a new perspective. I had gone there to see if it was a place I would ever consider sending Jess. What I was seeing was the very thing I never wanted for Jess. The last resort when nothing else worked out. I selfishly always wanted so much more for her. I wanted something mainstream – something more normal. I never wanted Jess to go to that school. I had always said I would never send her there.
Ugh, that makes me feel like a bad person to even admit that.
May 2012 – Application submitted for Medicaid Waiver. Jessica was put on the “short” waiting list.
July, 2013 – Notified that there was money in the budget and the request for Jessica’s funding had officially been made. It was exciting news that we had been anxiously awaiting.
December 2013 – Still waiting, I wrote a letter to the Department of Behavioral Health and Developmental Disabilities begging for help because the availability of my support system was changing.
“…I am not sure why funding has not been released, but I am feeling a serious sense of urgency about getting that pushed on through. I feel Jessica’s well being is at stake. Since I have no other avenues for help with Jessica during the day, soon she will be having to be at home by herself most of the week days and I fear for her safety. She does not know how to cook but occasionally will turn on the oven while she is at home alone. She is not supposed to open the doors or go outside while no one is at home but she occasionally takes her dog out to the backyard to let her go to the bathroom. She is not able to dial 911 for help. If she cut herself accidentally she does not know any first aid to control bleeding. I also worry about her falling down the stairs and being hurt with no way to call for help. Although she knows she’s not supposed to open the door for anyone, her behavior is unpredictable at times and I worry about door-to-door salesmen that make their rounds in our neighborhood. We even had one that pushed past my other daughter one day to let himself in the house.
Besides Jessica’s safety, my job is not such that I am available for her when she tries to call me, which can be 10 times/hr if something is wrong. She got frustrated about something the other day and when she couldn’t get help she ended up urinating in the floor. Starting in January, I am not sure how we are going to make it without help and I worry about my ability to keep my job. Please help!”
February 2014 – We were notified that funding was approved and released. Hooray! That actually meant it was time for a few more meetings to get services set up.
Now that waiver funding had been released and services could be set up, decisions had to be made. Options included choosing an agency (for a group setting) or to self-direct, or a combination of the two. With the lack of available services in our area, choices for a group setting were very limited. During the meetings to decide on a plan, Jessica participated and voiced what she wanted for herself and for her future. She wanted to socialize. She wanted to help others. She was tired of not having structure and wanted to go back to school. Based on her input, the decision was made to allot part of the funding for self-directed services and, reluctantly, part for a group setting.
The group setting – the school I referenced earlier. That was my option. This is what it had come to. I had already changed departments in the hospital where I worked so that I could have a regular schedule. But still, I needed more help than ever. I had a regular work schedule, but it was 5 days a week instead of 3. If I was going to keep my job, we had to make it work at the school. I was attempting to rise above my own fears and my own preconceived ideas of what her future was supposed to be.
What I never wanted for Jess… that was exactly what we were heading for.
The sense of desperation was taking its toll, and you have so effectively conveyed that to your readers. You have written with such honesty and have given voice for so many parents who don’t have a forum. Thank you.
Thank you, I love you!
Anxiously awaiting the continuation of this, as it’s where we are right now. Funding has been granted. Waiting to see what our budget funding allows, and have decided to do self-directed. Confused more than ever really….
Jayne, it all can be so confusing. I am still learning the ropes somewhat. Trying to get in a groove with the self-directed part. Thanks for your interest and stay tuned for more.