I’m so incredibly upset right now that I’m either going to take a nap or blog. And lying down with my eyes wide open as I literally hear my heartbeat in my eardrums is not working, so here I am a’ bloggin’.
Where to begin? Last Monday, September 19th, Laelia had her first day of school. Laelia waited at the curb on an unusually foggy morning for over an hour. The school bus never came.
After my husband made some phone calls a guy finally came, only no bus. He was Willie with Safety and Training with San Diego Unified School District’s Transportation Department, and he was there to see if we qualified for bus service since he heard we’d be using a new chair (by that he meant gait trainer which is a walker with a seat in it) that he was unfamiliar with.
Keep in mind that the fact we’d be using a Kid Walk, including describing what that was, was revealed in Laelia’s IEP three months ago. We had no idea no bus was coming or that we’d need to qualify for this. In fact we knew the transportation department was difficult (for lack of a better word), and had made sure three weeks earlier that we were set up with special needs bus service for a gait trainer.
Of course we did know that we would have to break down the Kid Walk for the bus driver. But we were still excepting a bus driver (in an actual bus) and not some sort of inspection.
Charley was totally caught off guard. In that one quick assessment we were denied because Laelia’s gait trainer breaks apart but does not collapse. And using a different special needs bus that transports equipment without breaking it down wouldn’t work because it would mean she would take up two spots: one for her seat and one to hold the gait trainer. And in this economy you don’t take up two spots.
In other words, San Diego Unified School District’s transportation policy is that the special needs bus only transports kids who can walk and therefore don’t need equipment or kids who have nonfunctional legs and therefore have equipment with seats they can ride in. Kids that are special, but are not too special. Kids that take up one seat and don’t need equipment that needs to be stored elsewhere. Although walkers and gait trainers should qualify under the law (ADA) for transportation, that is not the reality. And I can assume that any medical equipment that comes out when technology advances that is in the best interest of these kids will almost likely be denied for transportation service based on this experience. Goody.
For the last week we have had no bus service. Our contract hours with the school (Head Start) are 8:00 to 12:00. To say it’s a hardship to hold down a job and get our kid to and from school at those times is an understatement, especially when I commute twenty minutes to work one way. We have been talking a lot with our SEEC coordinator, Sue, who then met with her supervisor, Lori, to discuss it. In the meantime I contacted Kim, the bus scheduling person, and she finally gave me Sergio’s number. Sergio is the one in charge, and is Willie’s boss. He agreed to send Willie out again to my home to see the Kid Walk, but made no promises. Sergio also told me I could always leave her durable medical equipment at home.
I respectfully told him that he could leave his kids’ legs at home when they went to school too.
I think I may have used the word “ridiculous” five too many times in that conversation. Oh well.
Today I met with Willie again to take another look at the Kid Walk. Steve, a rep from National Seating, also arrived to make sure the Kid Walk was in good working order and to explain how to break it down since his company distributes it. Steve showed Willie how it worked. Willie asked about the locking pin and if it was a problem, I started to explain that we thought it was a problem, but that Steve had just showed me how to use it (before we had not be using it at all), but Willie interrupted and said, “It’s a problem? Yes or no.” Ugh. Mostly though he was pleasant enough. But he did mention other kids were denied bus service based on equipment issues and that their parents had to bring the equipment and children to school themselves. Whoa! That’s not legal is it?
My hope was to explain in a rational manner that denying a child transportation based on her special needs qualifies as discrimination based on disability. If she qualifies for bus service in every way except for her disability then policies need to change. And if they deny her again I will be forced to fight this legally. I think I communicated that. Willie wanted me to see it from his perspective. I can understand his perspective, but I could never agree that denying my daughter bus service would be in the best interests of my daughter or the community. (I started to cry. Ugh.)
He said we’d know tonight or tomorrow what their decision is.
I feel like I’m fighting a system of apathy.
The idea of a legal battle makes me sick. But hearing about other kids being denied service because of their equipment makes me feel sick too. Just having to fight this at all makes no sense to me. It’s just illegal. And this is an emotional hardship on our entire family when something like this happens. This is not the first time that we’ve been denied some service through SDUSD because of Laelia’s special needs. This is not the first time we’ve heard loud and clear, “We don’t want you.”
And Laelia’s self confidence just gets chipped away when this crap happens. I sat down with my daughter on the front step of our home after they left and we talked about how much everyone wanted her to be able to ride with the other kids. “I want to ride the bus!” Laelia said, “But it doesn’t want me.” I told her that Willie and Steve came over to our house just to try to work out bus service for her because she was so neat. (Okay maybe this is fibbing a bit. The transportation people are actually the problem, but since Willie has a first name that she knows, then in Laelia world he’s one of her friends, and it would be hard to explain that he’s not on her side.) She said that made her happy and she wants to ride with her friends again.
Then she asked if they’d let her drive the bus. 
This is what we’ve been working on in OT for the past three months. Really since her last occupational thearpist in the South MTU. So after much hard work I give you PANTS!!!
