Two Steps Forward and One Step Back…

By Jennifer Reese (ECNV Medicaid Programs Coordinator)

Parents of children with disabilities understand what I’m saying.
I fight regularly to make sure my daughter Cailyn who is 8 receives the medical care she needs.
You would think school would be easy.
There are laws in place and lots of smart people working on policies to make sure kids with disabilities are given a “Free and Appropriate Education” (FAPE) which is defined in laws like the Individual with Disabilities Education Act (IDEA)
Inclusion for a child with disabilities can mean a lot of things.
We’re grateful for our kids to be included but it can’t mean being parked at the school performance and left on the side like a mascot. These kids need to be engaged and active participants. Lack of communication skills or behaviors may make this difficult, but come on, let’s think out of the box.
There was recently an article which appeared on a number of my friends Facebook posts titled “Yes, your child with an IEP can go on the field trip.” The article goes on to explain that your child can’t be excluded from a field trip based on their disability. It also suggests steps to take if your child has been excluded.
Fortunately, Cailyn was included in both of the field trips the 2nd grade at her school attended and I tagged along as a chaperone on both field trips.
The first field trip was to a celebration of Native Lands. We watched and learned about Native American and Tribal African dances and instruments. Then we learned about farm and cowboy life. It was a nice day, we were outside and despite the gravel paths I had to maneuver with her wheelchair, overall enjoyable.
The part that was very frustrating was that there was a caravan of busses to take the kids to the field trip. Sadly, Cailyn was the only student on her bus.
So again, included… kinda.
And in my mind so frustrating when a county is clamoring about budgets. Why were no “regular” kids assigned to our special ed bus with the wheelchair lift? Yes, it was a nice quiet ride but an entire bus for one little girl... There were at least 20 open seats available.
I spoke with staff at the school and for the second field trip, to a local historical plantation, 10 other students and their chaperones were on our bus. A win right? Kinda…
When we arrived one of the staff came rushing over to me to tell me the location was not accessible and my daughter who is in a wheelchair may not be able to participate. She said, “Oh, if the school had only told me I’d explain we weren’t handicapped accessible.”
So, whatever, I considered getting back on the bus and having them take us back to school, but it was determined she’d be able to easily participate in 3 of the 5 activities and unfortunately we couldn’t go into the farm house.
Modern buildings need to be accessible, per the Americans with Disabilities Act, but historical buildings are given a pass if modifications would dramatically alter the original buildings.
Our fourth activity of the day was the most disheartening-- going to see the one room school house. It was actually down the highway a bit so we had to all load back on to the busses.
Ok, fine, but if you’ve never experienced it getting Cailyn in the bus and secured with all the straps, belts and buckles, takes a bit of time and when she’s done she looks like she’d be safe for a Space Shuttle blastoff. We rambled down the highway, unloaded Cailyn and then I pushed her through high grass to join up with the other kids.
When we got there, this is what we found.

This picture is powerful in a few ways.

  1. Look how far we’ve come with IDEA laws that protect Cailyn’s right to a FAPE and she’s entitled to and able to participant in a public education.
  2. It is a sad statement that she’s the only kid unable to go into the one room schoolhouse because there’s no ramp to get her inside.
I’m not usually one to just complain and not try to help solve problems so I will contact the plantation to see what else can be done to make activities accessible, especially a ramp at the school house. I’ll also approach the administration and teachers at the school to ask that in the future we either plan accessible field trips or at least alert parents if their child’s participation will be difficult and accommodations need to me made.