This week, on GrokTALK, my guest is Beth DiPasquale. The subject is HB1215, a bill to help people with communication disorders, and how, despite unanimous bipartisan support in both chambers, some greedy State Senators made it unpassable and refused to fix it so it could.
00:00 Introduction to Communication Rights
01:08 The Journey of Spelling to Communicate
04:50 Legislative Challenges and Advocacy
08:12 The Impact of Politics on Disability Rights
15:00 Creating Change Through Nonprofits
16:48 Future Steps and Community Involvement
“Tradition is not the worship of ashes, but the preservation of fire.” – Gustav Mahler
Note: Sen. Avard was emailed and asked to comment, but no response was received prior to the publication date of this program. We did not reach out to Sen. Rochefort, but it is our understanding that, in the Committee of Conference, they tried to tack on the 15-mile exclusion zone for major hospitals, which had previously been repealed as part of advancing health care freedom and choice in NH. In other words, they appear to have killed HB1215 because the House would not let them pander to the Hospital Lobby.
Watch on the ‘Grok Rumble Channel if the embedded video does not load.
- https://www.nhspellers.com/
- Beth’s Letter
- Grace’s Letter
Authors’ and Speakers’ opinions are their own and may not represent those of GraniteGrok.com’s sponsors, readers, authors, or advertisers.
Transcript [has been edited]:
Steve (00:00)
Welcome back to Grok Talk brought to you by GraniteGrok.com and Grok Media LLC. Don’t forget to check out the website for the limited-edition commemorative mug, 250 years of America and 20 years of GraniteGrok.com, all in the same year. They are available for a limited time. Or you could just give us money because we just need money anyway. All of this stuff costs money. So my guest is Beth DiPasquale. She was
sort of the impetus behind a piece of legislation that was designed to help people with communication issues and it was doing great until it wasn’t. So Beth, thanks for joining me.
Beth DiPasquale (00:37)
I’m so
happy to be here. Thank you for having us. This is really a very important topic.
Steve (00:44)
Okay, so the bill is H B 1215 relative to supporting the Preferred communication method. I can’t even read my own writing, supporting the preferred communication method of people who have communication disabilities. And you wrote to me and said, Hey, you know, we sort of kind of encourage the legislature to put this bill in, and why don’t you start with that? Tell us how it all started.
Beth DiPasquale (00:56)
It happened.
Sure, sure. So I have a twenty-three-year-old daughter who is what we call a non-speaker. So we don’t like to say “nonverbal” because “verbal” implies there’s no language there.
But she’s an unreliable speaker or non-speaker. So her form of communication is not verbal, you know, I mean, speaking to people. It’s like us, right, exactly. So about three and a half years ago we
Steve (01:32)
It’s not this, basically.
Beth DiPasquale (01:39)
We were introduced to this method of communication called spelling to communicate, or as we will refer to it moving forward, is S2C. And the premise is that these people who are non-speakers actually have whole body apraxia.
So their mind is completely intact. The problem is from the apraxia. Apraxia is kinda like when you had a stroke, like if you had a stroke and they have to like reteach you how to do some things. and this whole body apraxia basically everything is here. They just can’t get it out here because there’s a brain-body disconnect.
And going from the brain to the mouth is a fine motor skill. But when you change it from the mind to you, you can just barely see my shoulder poking a board; you’ve now moved it to a gross motor skill, which is easier for them to adapt to, and they spell everything.
So we started three and a half years ago, and you start on these, you know, stencils; they look like this. This is actually the second phase, right? And so you would take a pencil, and you would poke the letter. Okay? And then as you move along and get better at your technique, then you would move to something like this.
which is a laminate board. This is actually what we still use today when we go out and about because it’s easier to take with us. But then you gradually move to a wireless keyboard and an iPad or something like that. And then you become completely independent, and you f you either use just an iPad or
So that there’s that graduation. And then how w you work it is you have these lessons and you have them practicing spelling and then answering questions and I have to tell you that right at the beginning, you know, the the practitioner came in and she was working with my daughter Grace and her you know and and I had been homeschooling her since third grade because I had had it with the school system. And I
I sat down behind them, and they were starting to work on this lesson. She had explained everything to me. And this lesson was about these h different kinds of homes in Italy. And I’m in the back going, No way. I was still trying to do second and third grade curriculum with her. There’s no way.
Within, you know, fifteen minutes, there’s my kid spelling these words, and I’m like, and it’s not that I didn’t think that she was smart. I always knew that she was smart. I just, you know, I just thought that the problem was she was never gonna get it out.
Well, as time progressed, she became what they call “open,” able to just express herself. And the things that she is saying are just incredible. So, you know, a life-changing thing. Okay. So now, and this is happening all over the country, this is happening internationally. And what we’re finding is that
There are some people who just don’t believe that this is a thing. And so we’re running up against r some resistance. So a lot of us are trying to pass legislation to basically say a person who has a disability has the right to choose their preferred method of communication, whether that be sign language, gesturing, AAC devices, spelling to communicate. And
so there’s this big thing happening in New York where they basically came up with this same bill. And I said, you know what? We need to d be doing this in every state. So I took their legislation, and I kind of tweaked it a little bit for us, and I presented it to my local legislator, who is Representative Jim Copalt, because I live here in Wilton.
And Jim actually had the kind of the same reaction three years ago when I posted a video of Grace spelling. He called me and said, What is that? What is going on? This is amazing. I can’t believe this. I said, I know, this is great. So he was very happy to support this legislation. So we wrote it up and him being, you know, in already in that arena. He knew how to maybe tweak the words a little bit so it would fit better for New Hampshire. And so he did that. And so here we go. Here’s the law, and I’m showing it to you because this is how simple it is. It literally is like just a few lines here. And it basically
Steve (05:46)
It’s a good New Hampshire bill. It’s a really good New Hampshire bill. A good New Hampshire bill is very short.
Beth DiPasquale (05:51)
To the point, no bells and whistles. Okay. And it basically says that a person who is receiving services under this chapter has the right to communicate using any of the following methods recognized in supported group homes.
Yada yada, augmentative devices, independent letterboards, independent typing-based communication, sign language, all of them. So it lists all the different ways. Okay. And now here’s the rub. So goes through the house, literally passes unanimously.
If you could even go on to the website where they show, you know, right, they show the people in session. There were these wonderful representatives saying, this is a much-needed bill, this is great, we need this. Okay. Passed unanimously in the House. Then it goes to the Senate. And the Senate passes it unanimously.
With a voice vote. So they hadn’t done a formal vote yet or anything. Okay. And then along comes the Christmas tree, I guess is what they call it. And a representative who had tried to pass a a bill. I’m not really sure about what the whole bill was, but this bill previously failed. Okay.
He took a portion of that bill and said, hmm, now I’m I’m I’m thinking for him, so this might not have been what he thought, but here’s a sure thing. Let me take this little, you know, piece of this legislation that I really want, and I’m gonna stick it onto this great bill that looks like it’s gonna pass unanimously. Well.
Once they reintroduced it to the Senate, the Senate said, No, we don’t want that piece on there. And Representative Roachford from Coos County, I believe, said, Well, we’re keeping it on there. And so it failed.
Steve (07:37)
Yeah, my understanding was that so the thing they added was transfers from freestanding hospital emergency facilities, which is something the hospital lobbyists wanted passed that had failed, as you pointed out, and then the Senate tacked it on there. And of course the House didn’t want anything to do with that because we’ve seen a lot of work in the House to try to address issues with the hospital lobby trying to do things that are bad for public health, that are bad, I mean, in this case.
You have this fabulous bill that’s come, has complete bipartisan support. Everybody thinks it’s a great idea, and somebody tacks something onto it, and now it’s dead.
Beth DiPasquale (08:12)
And I guess, you know, I’ve been the parent of a child with a disability for twenty-three years. And I think I I mean I I I guess I’m just shocked and just so disappointed that now families that have children with disabilities have to suffer even more without this. That I I guess I just don’t understand how a person
could do something like this to the disability community. I I I it just blows me away that someone could be so heartless, because that’s all it is, to to the I mean a a at the point when you knew this wasn’t going to go through.
Beth DiPasquale (08:50)
Just have the decency to say, okay, we’re gonna pull that because this is a much-needed bill. This is concerning people with disabilities. Let’s just let’s let it let it pass. But to then say, no, I’m not going to. And the other person behind this is actually one of the bill’s co-sponsors.
Steve (09:00)
Yeah, I saw that. I did reach out to that individual and told them that I was covering the story and asked for a comment. And I will wait and see what happens. And if he sends me something, I will read that in and add it. But I have some familiarity with this. My wife has worked, excuse me, in a public school for a very long time. And her initial job, she’s a kindergarten parent now, was working with the more severely disabled kids who were in the system. And a lot of them were nonverbal. so the first
Five years she worked there, she spent an awful lot of time working with kids, some of them in wheelchairs, some of them who were mobile, but you know, they they couldn’t communicate. So she literally had to learn how to communicate with them. And it’s fascinating for people who’ve never ever had to deal with it. It’s amazing, and it can be frustrating, especially when you’re dealing with very young children who are just trying to tell you that they want something or they need something or they want to share something with you and they just can’t figure out how to get you to understand them.
So to be able to have, you know, a system where, you know, we’re gonna say, Look, we need to make sure these people have they have I mean, they have as much right to communicate as everybody else. So
Beth DiPasquale (10:16)
It it actually is a human right. It is. So can you imagine, can you imagine
Steve (10:18)
So when you wrote to me, I was like, I was like, What? I mean, and then you and your daughter both wrote letters to the New Hampshire State Senate, correct?
Beth DiPasquale (10:29)
No, actually, we just focused the letters on those two people, on the two sisters that made this. Yeah. My daughter was furious. Furious.
Steve (10:34)
Okay. The two individuals. Okay.
I bet. Well, I mean, she’s gone through all of this and had great success with the tools that she had available to her. So I could see why she’d want other people to have easier access to
Beth DiPasquale (10:51)
Sure. So Steve, listen, imagine, I mean, this is how these people describe what their lives were like before they discovered this method. They were pris they they said we were prisoners in our own body. I mean, can you imagine having a fully functioning brain?
Steve (11:06)
Mm.
Beth DiPasquale (11:11)
And everyone telling you, they have a developmental, they have an intellectual disability. That’s their part of their diagnosis. So you’re literally being told you’re stupid. You that you can’t, that you are unintelligent. And then you’re sitting there going, I am so intelligent, I just can’t get it out of my mouth, right? And now they have this way. And, and I mean, my daughter is I’ll tell you, she’s
I, you know, I am Italian, obviously, hence the name. And let me tell you, I’m a feisty Italian. Well, the apple doesn’t fall far. But I would have never known that had she not I mean, she’s really upset at me, you know. I did send you her letter. You know, she. She’s very upset. She very upset it. Yeah. And her letter says it very clearly.
Steve (11:56)
So I mean, I read the letter; it was very well written. I read yours a little bit longer, and you know, maybe with your permission we’ll share those and attach them. Okay, and people can read those. We’ll put the link underneath the video, and just to get an idea of some context.
Beth DiPasquale (12:50)
Yep. I mean, it’s just, you know, again, I think that our problem with this is that at some point when you realized that it was not gonna go through, why did you not pull back that piece? Why? Why let a whole community of people suffer
for something that literally had absolutely n I mean, does a mobile emergency room have anything to do with people having the right to choose their method of communication? No. Right? So I mean and I guess, you know, maybe you can help me with this because, you know, it’s funny, I I don’t I don’t know the exact saying, but you know, people will say, you never get
involved in politics until it d until it affects you and then you have to, right? I was that kind of person. That I will totally admit when I was eighteen years old, which was, you know, a million years ago. A million years ago. You know
Beth DiPasquale (13:48)
I was I’m a Mass transplant, so I was living in Massachusetts at the time- but I literally would vote for the person who had the Italian name. I mean that’s where y that’s how out of it I was. Like I just, but then, you know, as you grow older and you, you know, you get into it a little bit, but you know, boom. When I you know, when I try with a disability it
Steve (14:06)
Yeah, that happened with COVID a lot. A lot of people were like, Wait, what’s going on? Why does this happen? I got interested in politics because of nine eleven. Something happened, and I couldn’t explain it or understand it. So I started researching, studying, and learning to understand all the things behind what led up to it, then the government’s response, yada yada yada, and many years later, here I am. But yeah, that’s usually what it is. I mean, and it’s great to have you involved. It’s good to have everybody involved. I think
Are there any? This always comes up, and we have to ask this because, you know, as generally small-government people, we like to see private nonprofits and organizations that see a problem and go out and try to solve it. Is there anybody in the private sector or the NGOs or the nonprofits that has attempted to develop or expand access to this sort of technology?
Beth DiPasquale (15:00)
Wow, that was a great question. And I didn’t even talk to you about this. That was a great segue. Actually, talk about having a problem and and and trying to fix it. Grace and I are actually in the process of creating our own nonprofit right now. So
Steve (15:16)
Well, that’s the beauty of it because there’s a lot of things government shouldn’t do, and there’s some things government’s really, really bad at. In fact, it’s bad at a lot of things. But, you know, there are a lot of public-funded services. And if you’re going to be paying people in the public health sector for things or like in public education, again, I see why it would be really important to say, Look, these people have as much right to communicate as anybody else. You have resources available.
This is what you should be pointing them at instead of these other things over here, because this will actually help the student or the individual or the patient or whatever. but again, if there’s a way for the private sector to do this, if you guys can get this funded and and that would be that would be way better because then you don’t have to worry about stupid politicians.
Beth DiPasquale (16:01)
Sure. Well, you know, the only thing about this legislation is that it really puts a focus on the fact that these individuals that have disabilities have the right to choose which way they w want to communicate. So I do believe we still need that. We still need that peace. But as far as, you know, helping those who are non-speakers, we’ve got a whole community going right now in New Hampshire that is just thriving and growing, and I’m very proud of it. I’m I’m I love our group.
And as we grow, you know, things are starting to happen. So if I could do a plug, thanks. So if anybody wants to know more about S2C Spelling to Communicate or what we’re doing here in New Hampshire, we have our website, and it’s www.nhspellers dot com. You can go there, and you can find out where you could find a practitioner. You can read about, you know, more about what spelling to communicate is. And please, if you have or know someone who has a non-speaker in their home, go and check this out because it literally is life-changing.
Steve (17:20)
So just for clarification, I’m good friends with Jim Cophalt. We serve together on the board of the Six O Three Alliance, so I know Jim. And I assume they’re gonna reintroduce this next session.
Beth DiPasquale (17:31)
Believe so. Yeah, I’m not gonna stop. We’re not gonna stop.
Steve (17:34)
Good. Excellent. Well, Beth Di Pasquale, thank you very much for your time and your attention and your dedication to this issue. And hopefully we’ll talk again soon and you’ll have some more great news for us as this whole project of yours goes forward.
Beth DiPasquale (17:47)
And sure, and I wanna just thank you for allowing us to have some time to tell our story and you know, I I really urge people to get involved with the process and and then call out those people who do things like this because, you know, they affected their constituents. But, you know, I understand there’s a process and everything, but you know, things have to change.
Steve (18:22)
We’re not fans of that habit. Everybody does it, but you know, every time it comes out, this is what you do. You talk about it, and you call up.
All right. Thank you very much for your time, and I hope we’ll talk to you again soon.
Beth DiPasquale (18:36)
Ridiculous. Yeah. All right. Thank you so much.
I appreciate you.
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