The battle for accessibility continues!
On April 1st, the day before I left on vacation, I received an email from a lobbyist who represents Superintendents, Principals, and School Districts. We had talked a few times on the phone before about the bill. She had threatened to kill the bill if we didn't exclude schools, but I felt like we still had room to negotiate. Here's her email:
I had no idea what she was talking about. There was a meeting set up? News to me. I was frustrated that she implied that I wasn't being open and honest with her. I wasn't hiding anything. She copied a bunch of other lobbyist in the email, so I decided to respond to all of them. Here's what I said:
"Hi XXXX! You and I spoke on March 22nd and March 23rd about this bill. We discussed options and compromises and the need to be heard by Representative Briel. After we spoke I called Representative Briel. I talked to her about your concerns and how we need to set up a meeting. I then emailed you back and let you know that she wants to set up a meeting. I have not spoken to her since then and I was not aware of the meeting scheduled for next week. But I remember that is what you wanted, so that you could voice your concerns.
When you and I spoke on the phone I asked you how many schools were going to be built in the next 10 years. I then asked how much it costs to construct a new school. We also discussed other options for changing students with diapers like using nursing stations. I asked you if you knew what nursing stations were required to have. We ended that call with some lingering questions and I felt like some things still needed to be addressed. So I went to our local schools and talked to school nurses, teachers, principals, and even a superintendent! We talked about the needs of the special needs students and how schools are supposed to provide toileting needs for them when they are students there. We talked about the costs and like you said "the burden on tax payers." We discussed options and tried to brainstorm other ways we could give some dignity to this community. Here are some things we discussed:
Cost - How much is a new school? That really depends on the size, type, and location. There are High Schools in Texas that have spent up to 100 million dollars on just their football stadiums! That puts the total bill around 250-500 million dollars! But we aren't in Texas, we are in the great state of Illinois! From what I can find a new High School can cost $320 to $385 per square foot to build in Illinois. This would put a costs for a larger hight school around 100 million dollars. If this bill passes and if the school is over 40,000 square feet and is built after January 2029 it would need to include an adult changing station. I've gone to a few websites that area run by people who are against this bill and they state that these adult changing stations would costs $10,000, so we'll use that number. $10,000 to give a High School child their dignity while they get an education at a 100 million dollar High School.
Side note: I have friend who uses powered, height adjustable, adult-sized changing tables to change himself. He is able to self transfer onto the table from his wheelchair and change himself without any additional help. He talks about how amazing it would have been to have an adult changing station in his High School, so that he could take care of his toileting needs himself. He can! He just needs the tools! That is dignity. That is what the disabled community deserves.
Nursing Stations - Say there is a mother with two sons. One is a High School Varsity Basketball star (B) and the other is a middle schooler who is in a special needs program, uses diapers, and is in a wheelchair (T). The mom takes T to go watch his brother play in a basketball tournament. They go to a school and are cheering on B when T has a situation and needs a diaper change. If there is an adult changing station in the school the mother can take her son there and get him changed. If there isn't then she needs to find someone who has keys to the nursing station. Even if she is able to find an administrator (Are they in the admin office? Are they watching the game?) and get her son into the nursing station there are other problems. Maybe there isn't a cot because the nursing station is too small for one. What is there is a cot but it is too high and the mother can not lift her child onto it without help (this is where powered, height adjustable tables come in handy)? And now she is left with two awful options: change her child on the floor and risk not being able to lift him to get him back in his wheelchair or let him sit in his soiled diaper. I've read through the literature and Nurses stations are not required (the word "should" comes up a lot) to have beds or cots, sinks, or places to dispose of soiled diapers.
I know what people will say - just stay home. If I want to take my child to watch his cousin participate in a wrestling tournament at the local High School, but there isn't an adult changing station there - just stay home. If I want to take my child to the park or a museum or on vacation... don't - just stay home.
This bill is not trying to hurt people. It's trying to help them. $10,000 changing station in a 100 million dollar school - That is not a tax burden. You'd be surprised how many people think that the special needs community deserves dignity. There is a significant aging population and they don't want to just stay home. Having adult changing stations in public places are beneficial to special needs children, disabled vets, aging adults, babies, people who are temporarily disabled (did you know its easier to put in or take out a catheter if you are laying down? I didn't know that until someone told me recently!), and their caregivers.
I am a mother to a child with severe disabilities. I am his caregiver. I am so tired of changing his diaper on the floor of public bathrooms. And soon I won't be able to. My son is getting bigger and I won't be able to safely lift him off of the floor without help. Our world is getting smaller and we are becoming more isolated. It's not healthy and it's not okay.
We are on different sides of this issue, but that doesn't mean we can't talk. And it sounds like a meeting is set up! I appreciate you letting me know about it. I'm going to reach out to Representative Briel now and see if I can attend the meeting via Zoom since I will be out of town next week.
Talk to you all then!"
After I sent my email I reached out to my Representative Briel. She didn't know about the meeting either, but she said she would reach out to the lobbyist to see what was going on. I also told her that I was going on vacation but would be available by phone, email, text, etc. If the meeting was going to happen I wanted to be a part of it.
Well, apparently the meeting between the Representative and the Superintendents happened and another amendment was made. To this day (April 26th) I still do not know what was discussed. But the good news was that the bill was moving forward and was scheduled to be voted on by the House on April 17th.
In other good news, on April 7th the bill got a co-sponsor and she is a Republican (the Republican Caucus previously came out against the bill). I am so excited that we have a bipartisan bill!
On April 17th, Representative Briel gave a short speech on the floor of the House and then voting began.
The bill passed the House!
72 Yeas (5 R/67 D)
18 Nays (17 R/1 D)
4 Present (4 R)
14 Excused Absence (5 R/9 D)
10 Not Voting (8 R/2 D)
Five Republicans broke with their caucus and voted Yea because their constituents asked them to. Calling your Representative matters and it makes a difference!
After the bill was passed in the House, Representative Briel put out the following statement:
I appreciate her and her staff so much for fighting for us! I know going up against an opposing caucus and a group of lobbyist is not easy, but she held to her beliefs and I love her for that!
My friend, Deepa, and I are meeting with Senator Lakesia Collins tomorrow to discuss the bill. Hopefully any opposition to the bill presented itself while the bill was in the House and all those issues were ironed out (the bill was amended four times!), but we'll see. This is politics after all and we are up against some powerful groups who view us as the bad guys for trying to make the world a little more accessible.
Please go to this website and click on "Illinois Senate" to find your Senator. Please CALL them and ask them to support HB 4379 (Changing Tables/Sami's Law).
If you'd like to read the bill, see updates, or view the witness slips, click here
Thanks for fighting with us!
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