S.B. 81 Dyslexia Testing Amendments: transcript

Breaks are allowed. I have not been to education committee before. So, uh, grateful to be here. And, uh, it's not nearly as intimidating when there's only three of you around the diocese. So there's that. This bill, uh, Senate bill 81 came to me by a group of concerned, uh, parents, parent groups and professionals who wanted to address, uh, the dyslexia space and wanted to find ways where we could expand access and options for folks who are trying to get diagnoses, uh, and assessments and also services for their kids. So what we, where we ultimately ended up with this is, is not an enormous, you know, compend toum of, you know, 190,000 lines, but it's a, it's a pretty simple concept. With that being said, we do have a sub number two. I would love to adopt and speak to that if, if that works. Okay for you all. We can ignore sub number one and go to sub number two.

Yes, I do. Uh, I would like to delete entitled title, body Delete entitled and Body Senate Bill 81 and replace it with Second substitute. Second substitute Senate bill 81 Dyslexia testing amendments.

Thank you Mr. Chair. And I'll, I'll work in what that substitute did to my description of the bill, but essentially it was language changes and clarifications that came after meeting again with stakeholders. So with therapists, social workers, clinicians, psychologists, and parents. To be clear that what we were trying to do, we were actually accomplishing. So in this bill we are trying to expand clarity around who is described to be permitted to administer a dyslexia assessment. And what I've heard from, from parents, and I, I think we can get it better out of the, out of my colleague here with me on the on the stand, but is that there's barriers to getting dyslexia assessments. Many of the assessments are conducted in schools, so that means someone has to be comfortable in the school setting or be in the school setting, enrolled. Even though you could come in, if you are homeschooled or out of that system, that's not necessarily the most comfortable space for people to enter or to feel like they're welcome or wanted, there maybe is the right word. Long waiting lists when people try to go out into the more private spaces. And so what we wanted to do was say, we are going to be clear that there are other people who can do these assessments as long as they're qualified, as long as they've been trained, as long as they know what they're doing. And we wanted to add it in here so that there was clarity about who could provide these assessments. We also wanted to add some additional, um, clarity about, hey, if a child comes in with assessment results, the school needs to take a look at those there. It doesn't have to be only the assessments that have been done by a school, it can be done outside of the school setting as well. So that being said, I think maybe I'll have you speak a little more to kind of the, what we're hoping to get out of this.

My name is Carrie Atkinson and I'm here on behalf of myself and parents of kids with dyslexia. I am dyslexic. I, because it's largely inheritable, I'm a mother of four students with dyslexia. I've gone four different routes to get them testing and diagnosing. I went through the schools with my first son. It took over and one year and three months for us to get through an I-E-P-I-E-E secondary evaluation and back to the school before he was able to get help with my next two. I Uintah those universities before a cheaper fee of 250. I could wait for two years to get into their assessment clinic and have a graduate student assess my child. It only took two years with my last child. I had gone back to work and I could go to the private spaces. I found neuropsych. I paid $3,000 and I only had to wait five months for that report. I just got that report. I'm now waiting 45 days for the school to go through a 5 0 4 assessment for that particular child. In all total, I've waited three years, nine months, and currently 12 days to get my children the help they need at both in and out of the school systems. And I've had great teachers to work with. I've had very few problems. The system is just laborious. While I was waiting and going through that process, I had to wait to find a tutor to pay for outside help for my child. I had to wait to find a counselor and hope them, pray for one who understood learning disabilities. 'cause our children have additional problems that they likely face. Students with dyslexia have a 40%, 41% greater likelihood of being diagnosed with anxiety. A 23 greater likelihood of being diagnosed with depression. And 11% of our students with dyslexia are likely to attempt suicide compared to 2.7% of their peers. These are numbers that keep me awake at night and number and numbers that make me desperate for us to find better options and greater paths for our parents and for adults with dyslexia like myself who was never formally diagnosed. And for homeschooling families who want different options. So broadening this to additional individuals is greatly helpful. One of the clinics I contacted had several people on staff that a neuropsych, they had a reading specialist and an SLP all who were working in concert. And I could choose which path to take. Reading specialist was only $400. The neuropsych was 3000 so wide. This hopefully will decrease some of the negative outcomes our children have to suffer as they wait. And I hope it will increase positives to conversations with the school earlier. We need to intervene earlier when we can have better interventions. Thank you.

So, uh, thank you. That's our presentation. Thank You very much. We're gonna come back to the committee for questions.

My name's Kathy Tenney and I'm here. I'm a part of the Utah Literacy Coalition and I am just for this bill. Thank you.

Ahead. My name's Sarah Strub. I'm with the Utah Association for, uh, um, marriage and Family Therapy. And we just wanted to say we support this bill and that we appreciate Senator Len's collaboration on it.

Sorry. A little bit of delay getting on. Can you hear me?

I'm Kim Rado from the Utah State Board of Education. I'm director of special education Programs. I just wanted to clarify the changes and make sure I have the most, um, updated one for the language on who can deliver the assessment. Do you have sub two? Um, I, I have one that on line 57 where we're talking about practicing within the scope of their practice for individual license and competent by training, education and experience. I don't know if this is the most updated one. It's sub one compared with sub two. Sub two, Sub two is what we adopted. Is that the language in sub two? 'cause I don't think that I'm looking at the same one.

Okay. I'm just hoping that I that this is the, the right one. This is silly. Thank you. Just wanted to clarify the language. You're certainly welcome to reach out to me offline if you'd like to.

Hi, Daniel Houseman. I am just representing myself. Um, and so I absolutely do support this bill. Thank you so much, Senator Plumb for your support. I also just wanna bring up though that while this bill is a, a wonderful start, that there is more work to be done. Um, that yes, we do need more individuals to be able to give the assessment, but then the next step is who can diagnose dyslexia. Um, that oftentimes professionals, um, aren't, don't have the training to do, um, a very thorough assessment. And so just expanding the scope of who could actually make the diagnosis. Um, and with regards to schools, so my experience with my two dyslexic children is that, um, that our school, which is wonderful, does consider outside testing. But the problem is that it doesn't then trigger an automatic process. So just because a child has a dyslexia diagnosis, it doesn't guarantee that the school is then going to do anything about, they might be only slightly below grade level or even right on grade level, but they have the potential to be so much more. So if we can then not only have the schools consider the outside testing, but that be required to do something about it. Thank you.

Thank you. I'd like to recommend Senate Bill 81 dyslexia testing amendments sub two with a favorable recommendation.

Uh, I waive some and thank you all for the years Waive.

Morning. I think I tucked. Yes. There it is. There's the phone. Gimme one sec.

Okay. Well, and it's actually perfect timing. Uh, when Representative Defay comes, uh, our bills are, are working in tandem and parallel, so that will be great. Alright. All right. I like running between committees. Hi. Hi again. Um, house HHS the new and far less terrifying HHS than my previous iterations in front of this committee. This bill came together over almost a year. Uh, some folks reached out after the last session and said, uh, we'd really like to look at how to address our kids' reading, especially in the dyslexia space. And boy, there are a lot of advocates and there are a lot of voices and parents and clinicians and teachers and a lot of folks engaged in these conversations. And like, everything the di the deeper you dig, the more nuance you find, and the more kind of challenging policy questions that arise. So this bill is admittedly pretty starting point. I think it's getting more complex as we go along, but it is, it is really just trying to start breaking the seal on improving the services available to kids who are impacted by dyslexia, but also by expanding who can help with assessments requirements that schools can take assessments from more than just with their internal spot. And then with some, um, substitution additions from Representative Deface.

Just so we're all clear? Uh, Well, I was just about to. Okay. It Was right on the cusp. You can speak to it, but we adopted it Again, but we'll adopt it later. Okay.

Yes. And then with some additions from her kind of workings in the space, we were going to add what a diagnosis, um, of dyslexia is and what it is not as well as including that a diagnosis is not a screening, it's not a recommendation from an educational professional to screen a student or the results of a diagnostic assessment. It defines what a screening is, and then provides that. If an educational professional recommends or refers a student for a dyslexia screening, neither the school district or charter school could discipline them for this. So again, these are kind of building blocks on moving up and I learned a lot from, especially speaking with the parents, that getting dyslexia screening, or, sorry, testing, screening diagnosis is not easy. That it, it's something that some wait months and months to get. It's, it's something that some pay thousands of dollars ultimately to get. And if you are not in the typical public school setting, that it often requires you to go into that setting. So folks that are homeschooling, folks that are charter schools, that they sometimes have to go into a space that's not really comfortable or feeling like it's theirs. And so we wanted to be able to expand who could help with providing those screenings. And we wanted to make sure we were doing so in such a way that, that we were being consistent, but also making sure that we were being smart and safe about it. So you can see on, uh, let's see if I can get to where my lines are. And I have the third sub printed out, so that's probably gonna screw up my lines. Lemme go back to my second one. Um, that it essentially req it, it allows a dyslexia assessment to be administered by a licensed individual, practicing with the scope of practice for their individual license, and that they have the abilities, that they have the qualifications, and that they know what they're doing. So we're not saying just anybody do this, if you happen to have x, y, Z title that you, if you have been trained and you are qualified, you can go forward to do it. So it does amend the provisions related to scope of practice for mental health therapists and psychologists. It aligns with approved diagnostic and statistical manual for mental disorder. So DSM criteria. And then clarifies that the scope of practice includes the evaluation and treatment, uh, of disorders as defined, including dyslexia. Again, wanting to be sure that we're having the right people do it, not just anyone. We're opening the door for the right people to do it. So I'm hopeful that I have some of the advocates here with me to be able to speak to some of the whys on this. But that's in a nutshell, the bill.

Okay. My understanding from going through this process is it is very often done in the schools and that there are, um, not every teacher does it, but there are some who do. There are also spaces where you can go to pay. Uh, one of my colleagues in the Senate, I think, believe it costs $3,000 to have it done outside of a school setting. So it is a little, it's challenging for folks. Um, but I, I may maybe as you present, you can tell a little more too.

My name's Carrie Atkinson and I am a founding member of decoding dyslexia, Utah. And a parent of four kids with dyslexia. I'm also dyslexic myself. So it's a bit of a catch 22. You go to the school and you're like, my kid's not reading. We have family history of reading failure. I think it might be dyslexia. They tell you we don't diagnose. 'cause they don't, they say, let's talk about reading failure. But you don't have a diagnosis or full understanding of what's going on in that child's brain. You go to the medical field and they go, well, we can diagnose, but we can't treat 'cause there's not a pill, there's not, it's all educational. Right? And so you get caught in this really weird catch 22. So in Utah, schools can screen for dyslexia. They can then they can also see if you qualify for an IEP, which kids with dyslexia do get IEPs under specific learning disability. Not all of them, none of my children ever qualified for an IEP 'cause we weren't failing enough. We were failing, but we weren't failing enough. So then you go out to a psych or a neuropsych and you get a full educational evaluation and they can give you a diagnosis. It can cost up to $3,000 for that diagnosis. And you go back to the school and they're like, that's really nice, but the kid needs to learn how to read. So it's, it's, it's a challenging space and that's why this bill is, is so needed. Oh.

It's, you're paying for that professional's time. So a psych or a Neuros X gonna give you an IQ test and then a full battery of educational, like, how are you reading? How are you comprehending? How, how are you doing academically? And then they're gonna look for discrepancies. There are new tests that have been developed in the last three years that someone who doesn't have to give an IQ test. And so it's within their professional licensing to just look at reading, fluency, comprehension ran that they can give those tests. And they're only about $500 to do that. So it's a much more economical and timely process for parents to access.

Well, and I think didn't, do we have a whole list of them there? So therapists, family therapists, for example, folks who are already potentially working with kiddos who are struggling in school, who have been taught how to do this. Let me make sure. I think that we, did we have a list? I don't, I'm not seeing, you know how sometimes you can't remember if you cut the list out? I think we may have cut the list out. I'm not seeing So, because we wanted it to be more about someone having the qualifications of knowing how to do it with it being allowed within their scope as opposed to being so prescriptive that we would eliminate some of the folks who could. Okay.

Yeah. Just maybe clarifying, uh, lines one 17 through 1 23. The section there that talks about like, um, a school district or scar or charter school not being able to discipline. Um, is this happening a lot? Like, and what's the context behind, like, how is this happening? What's the kind of background behind it?

Yes. You can absolutely answer that better than I can. Yeah.

Okay. So often our, our teachers who are our best advocates get also caught in a catch 22. They can't diagnose. And so if they see a kid is really struggling to read, they're failing. Like the teachers know who's struggling in their class, right? When you go to parent teacher conference, they're gonna say things like, your child's really struggling with phonemic awareness and their fluency is really low and their comprehension's low, and they're giving you like the big eyes. But unless eyes, the parent can understand what they're trying to tell me, they are really scared to say dyslexia because they can't diagnose under their licensing and their rules. And so we often have this thing where like, the teacher is slipping the parent a piece of paper with decoding dyslexia name on it just to help them get to where they need to be because the teacher doesn't want to get in trouble and give reprimanded for encourage and a parent to seek a medical diagnosis. 'cause that's not their role. But their role is to discuss reading failure, which is often related to dyslexia. So this gives our teachers greater protection that they can raise the, like they can say dyslexia and feel assured and calm that they can do that. We've, for the last 10 years, we've been giving them language of like, in the dyslexia handbook for Utah. It's like, this is what you can say, but it's still, they have to be serious characteristics of dyslexia so that they're not diagnosing. And it just, it causes a great deal of fear that they could be reprimanded. And I have seen teachers who've personally reached out to our organization who have been reprimanded, reprimanded for recommending the, uh, parents seek out information about AXA this year. Thank you.

Um, I can give the testing to the school. It is considered a data point along with all of their testing. Um, so it doesn't guarantee me a 5 0 4 plan. It doesn't guarantee me an IEP. And what often happens is it comes down to how educated and well-versed the parent is in advocating for their child. So if I go in with all that information and advocate, because I unfortunately have 13 years of experience, I often get a very different outcome than a parent who's doing this for the first time as I did the first time. Yep. So this clarification just makes that very clear for all parents that they would be able to do that.

I'm sorry. I will, I'll be very brief roles. Um, my name is Carrie Atkinson and I, I am a mother of kids with dyslexia. I'm gonna tell you really briefly my story of getting my children help. My oldest son failed to read in first grade and I Uintah the school. And I've been told I was dyslexic in Wellington, Utah in the eighties, which is wild that I was given that word. And so I very quickly got to dyslexia. I'm like, is he dyslexic? And I had the best teacher and she said, I don't know. You go find out and I'll do everything I can to help you. And that began my journey. I went through the IEP process. We failed to qualify. I then challenged it through an IEE, which got us to an outside expert who did a testing on my son. After waiting for one year and three months to get that testing through the schools, I was still told we didn't qualify for an IEP another year of advocating on school community council. And we had somebody trained as a Paradise who could work with him during this time. We waited for over two years for him to get help. By that time, he was in third grade and still failing. Um, then I moved to my next daughter who's also dyslexic. I knew a little bit better. I Uintah the university to reading clinic, and then I Uintah the psychic clinic there where you can have a graduate student do a psych exam. It only costs $250 if you do it that time way. But I waited for a year and three months for her to get off that waiting list and to get the diagnosis and get the process started in the schools. For my third child, I was knew a little bit more. I put us on every waiting list we got in at BYU faster. It only took 10 months that time and cost $250 for me to get the evaluation to get a little bit more support at the schools who could see she was struggling, but she wasn't struggling enough. By my fourth child, I was in a different position 'cause I had to return to the workforce. I only had to wait five months to get her to a neuropsych and pay $3,000 for her to get the diagnosis and to start that process. In all. I have waited over four years, nine months, and 45 days in the process to get my children the help they need in school. They're currently 20 17, 15 and 12. I have a Sterling Scholar Full Ride scholarship. They are exceeding every expectation and hope I had for them. However, in third grade, all of them were failing to read. We went outside the school and waited for tutors to get them the help they needed. We waited for counselors to get them the help that they needed. And one of the most important things that I want you to realize is, as these children wait, it affects their self-esteem. It affects how they see themselves. Our kids with learning disabilities are 41% more likely to experience anxiety. They're 23% more likely to experience depression. And the incidences of attempted suicide is 11%. 11% attempted suicide, 11% higher than their general peers. So this weighting is harmful. It's harmful to them academically, it's harmful to their mental health. So I am in support of this bill. All of the, this third substitute is even better than the original, which is great. And I ask you to consider, um, our children when you make this decision. Thank you for your comments. Carrie.

I'm gonna introduce my daughter, Kirsten. Hold on. Looks like I got a little glitch. So my daughter, Kirsten, she's 16 going on 17. And, um, she is a child with dyslexia. And I'll tell you a little bit about her story. I, I, this is kind of, sorry, I'm gonna share some hard things. Um, so in second grade was about the time that we realized that she had, um, something going on. But because she's my oldest child, we just didn't know exactly what it was. Um, we had a very sweet teacher who tried her best to just get her up to reading, but I Uintah, um, you know, kind of an event in the middle of the year. And all the other kids were at least able to read the poem that they had written. Kirsten was unable to read a single thing. And, um, at that point her teacher at least kind of recognized that there was an issue. And I Uintah her in tears and just went, what can we do? Kirsten did not get any assistance on this until third grade. And even then she wasn't, um, given the, basically the proper interventions. And it took forever for even for her to even go through IEP testing. We were able to get her into, um, a neuropsych at the end of her second grade year, only because they had an opening because, you know, we were on the wait list, but then an opening came up and we were able to get her in pretty quickly. But even then, we really didn't have a full diagnosis, nor did we even have kind of a proper treatment plan. It wasn't until sixth grade, she still was reading at about maybe a first grade level. Um, and that was after some IEP stuff. But we really didn't have a full sense of what she had going on. My parents finally paid about $20,000 for her to go through a specialized reading program that finally got her reading. So if you're tracking that she went from, she should have been able to read by about first grade to sixth grade. She was still reading at a first grade level. Her self-esteem was in the trash. And I'm sorry, this is extremely emotional. As any parent who's gone through this will attest. Um, she has gone through so much hardship because she just was never diagnosed. It is nearly impossible to get these kids the help that they need. And, um, as a result, she's had significant social issues and has always felt like she's behind and she's been bullied and teased for it. I believe strongly that anything that we can do for these kids to recognize this is critical. And as the legislature is having discussions this year about holding kids back from, you know, if they're not reading by third grade, while I support some of those efforts, I think that it's really missing this key piece, which is that dyslexia is very likely driving a lot of this. And if every kid has some kind of dyslexia intervention, the ones that don't have dyslexia will undoubtedly, um, excel and move on as great readers. And the ones who actually have the dyslexia interventions will get the help that they need so that they don't be dealing with the same issues my daughter has had going into sixth grade, not even being able to read and keep up with their peers. So thank you for taking my public comment on this. I really appreciate and I appreciate all the efforts that our legislature taking this year on ensuring these kids, um, excel and succeed.

Hi, my name is Jennifer Stout. I am a policy, an early education policy analyst with Voices for Utah Children. I just want to echo my voice with everyone who has spoken today and just say, um, that these dyslexia bills are very important to pass. Um, like mentioned before, we do have, um, a crisis with kids not reading up to level by third grade. And I think it's important to understand the framework that needs to be built in order, um, in order for these children to succeed. And obviously there's a population here in Utah with dyslexic kids, and, um, they honestly shouldn't be having to spend so much money and time and beg for the resources that they need. They should be there for them in place already. And so this is so important and I hope that you will, um, pass these, uh, bills forward. Thank you.

We need to move sub three, correct. So I would motion that we adopt sub three for Senate bill 81.

These are, I think, great pieces to add to the, the bill that we passed out of the Senate and, and I support it thoroughly.

Yeah, I would, um, move that we favorably recommend Senate Bill 81 as substituted.

to the sponsor for final word. Oh, Uh, waive summation, but with thanks for, for helping usher this along.

I'll waive. All right.

This bill came together working with concerned parents as well as educators and others in the field that's relevant to testing kids for dyslexia. And it's a small step forward, but I think it's an important step and, and what it does is it expands kind of the circle of who can perform dyslexia assessments and then that in turn gives the school districts additional help in who they can then treat or support with what they may need for dyslexia services. There are a couple substitutes that have been accepted and that was from coming along the way, making sure that we were taking the feedback from stakeholders. And at this point I, I feel like I said it's a small but important step. With that, I'm open to any questions.

Thank you Mr. President. I'd call the question please.

Thank you Mr. President. This bill came to be after the last couple of sessions where I have worked on

Thank you Mr. President. Uh, with the sprint Back to my chair. This bill that we talked about yesterday is, uh, kind of a seal break on starting to increase the services that we are getting to our students who may have struggles with the way they read and may have concerns they have dyslexia. It expands the kind of definition and, uh, breadth of who is allowed to perform these assessments. It also allows some, um, kind of more language about schools acknowledging these assessments and some clarity around diagnostics. Um, it's been broadly supported and like I said, it's maybe a little bit of a small nip, but I think it's an important step. And with that, I'm open to any questions.

Mr. Speaker colleague GRE ma May remember a couple days ago we passed a dyslexia bill. Um, this is part of a two part series, uh, that we are, uh, addressing dyslexia. This is a bill that just has policy. It has a zero fiscal note. And this is a policy, as I mentioned earlier, we have a whole in our education system when it comes to addressing dyslexia. And these are the policy pieces to help us, um, that require schools to identify and to intervene and create a plan for children with dyslexia. It also, um, has protected, uh, protection provisions for teachers and any educators and professionals who recommend a screening, um, that they'll be protected from any discipline. And then it also clarifies that screening is not diagnosis and also the results of the screening are not official diagnosis. So we are just, uh, giving educators and schools the tools they need to help, um, create interventions and plans for students with dyslexia. And with that, I'm happy to answer any questions.

You. Thank you Mr. Speaker. I think we're on the wrong bill. This is Senate bill 18. Yes. Se third substitute SB 81 Senate bill 18. Oh, I I'm sorry. I little dislike. I am a little slow representative. I get it now. Um,

Thank you, Mr. Speaker. I just, um, will the sponsor yield to a question? Representative Faye, will you yield? Yes.

Thank you, Mr. Speaker. I was just wondering if, um, if teachers, um, face any kind of punishment, if they do not, um, recommend them for screening for dyslexia screening if they find that out.

Um, currently under federal law, they are not supposed to. However, there is somewhat, this is actually how, uh, we started having this dyslexia conversation. There was a little bit of a culture that there could be backlash for recommending a screening. And so we just wanted to make it very clear that Utah law aligns with federal law and that there are, um, no repercussions for recommending screening.

Thank you, Mr. Speaker.

I'll Waive summation is waived.

Thank you Mr. President. Uh, I do move that we would concur on this bill. This sub was actually introduced by me in committee after, uh, conversations with my house sponsor or floor sponsor. It added a couple of definitions about what a screening is, as well as made clear and defined what, uh, a diagnosis of dyslexia is and what it is not. I think it added, um, good pieces to the bill. So do we get a motion to concur?

Thank you Mr. President. Uh, this bill simply, um, they, they took a piece