Last week I was supposed to go to this "thing" out in Gettysburg, for two days. It was part conference/part work session, a statewide thing run by our state Bureau of Special Ed. Since PA had the PARC decree 3 years before IDEA existed, we had "IEPs" and special ed, and we have these parent-led groups called Local Task Forces.

I've written about them on my site before, because they're a fantastic idea, but they have this clunky name that is unappealing. Anyway, I am chairing the one for my county this coming school year, so all the people involved statewide were gathered to try and improve them going forward.

But, when you have a child like mine, with complex medical needs, a sitter is not always so easy to find. Especially the first week of July. So, it didn't work out for me to go.

Sometimes, though, the world works in mysterious ways. Right after Congress passed that horrible bill, Speaker Johnson sent everyone home. They were actually supposed to be in session but he canceled it. My Congresswoman was back home in our district (as I assume most were) and they reached out and asked if I'd like to meet with her. This was Tuesday night, asking about Wedesnday. Had I been in Gettysburg, that wouldn't have happened.

Anyway, I called off Kevin's van and his nurses for Wednesday, and we went.

https://birdmail.s3.amazonaws.com/images/1628/20250713024040518282230_10214286469511101_2192762172439067655_n.jpg

Lisa Lightner, Kevin Lightner and Representative Chrissy Houlihan (D-PA)

We got to chat for about half an hour. Kevin gave her an up close and personal glimpse into what it's like to go out with someone who is profoundly autistic. He took off his shoes shortly after we got there. He threw the few things that I had brought for him, that yes, were "highly preferred" items just hours before. He hit me once while I was talking. At one point, he bolted up out of his wheelchair, ran across the room and tried to climb a set of stacked chairs (I stopped him of course). Hooray for scattered skill sets???

Despite all that, we had a meaningful conversation and she got a look at some of PA's neediest citizens, and why these Medicaid cuts will be devastating to those of us who rely on HCBS services, in particular.

I didn't had hope for change--the votes are over, the bill has been signed. We chatted about upcoming elections, and my hope that is what will facilitate change.

But here's an interesting tidbit: At one point, I said to her, "I just don't understand how some Reps, like Speaker Johnson, can vote yes for this bill, when over half of his district relies on Medicaid."

She said she is surprised too. But here's the interesting part--she told me that she often asks her conservative counterparts, and they are telling her that they don't hear from their constituents.

Are they being truthful when they tell her this? I think some of them are. I'm genuinely surprised at how many people are too intimidated to call their people (reminder: they work for US, not the other way around). I've posted many calls to action on my page, only to see comments like "oh, I live in so-and-so's district, waste of time" or "I live in a deep red district, it won't matter."

I'm here to tell you: IT MATTERS. Studies show elected officials pay attention to calls and letters from their own district—even in “safe” seats. Your calls are logged, tracked, and lumped into a daily tally staffers relay to the member.

They work for us, even if it doesn't always feel that way. Step out of your comfort zone. Make time. None of us is too busy for a 5 minute phone call. Even better: If you live near one of your rep's district offices, stop in. Tell them that you're either disappointed in their vote, or thank them for a recent vote.

There's a lot more going on than this bill. There's the $7 billion he's witholding from states, that Congress already approved for education. There's the Department of Labor thing-- no longer required to hire disabled people.

Stay tuned, I'll have more on these issues, as fast as my fingers can type.

In the meantime, you can check here for the latest information. I have to redo and update a lot of previous posts, but will still be doing our "Take Action Tuesday" items.

Rest, but don't quit.

LL

*Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.