Developing Self Advocacy Skills

Originally presented on February 21, 2022

by Joy Harris, PhD

One of the most important skills children with visual impairments can learn is the ability to advocate for themselves. Self-advocacy includes speaking up for themselves and making decisions to help attain their goals. During this discussion, Dr. Joy Harris will provide tips and strategies for parents to help build the skills and confidence your child needs to be an effective self-advocate.

Transcript

Joy

I only have a few slides, to serve as talking points. I would like to share my experience with you all. And I would love to hear about your experience. Ideally, this will be a learning forum for us about what self-advocacy looks like, both for us and for our kids. And so I’ll start with a brief introduction. 

I am Joy Harris, and I actually have two roles. I’m coming to you with three. One, I serve as the executive Director for the Council of Schools and Services for the Blind. I am a faculty member in the School of Electrical and Computer Engineering at Georgia Tech. So, that is my full-time role, and executive director is a part-time role. And then I also am a mom of two wonderful kids. 

My oldest son has special needs. He is an amazing kid. He has autism spectrum disorder. I see in lots of different ways, and from different lenses, what self-advocacy looks like, and how it plays out all the way from elementary school to middle school. My son is in middle school now, he’s 14. I’m also teaching my daughter who is 10, these types of skills all the way through college, and then what it looks like from the professional side working with COSBVI and teachers of the visually impaired. 

I also want to point out that this is not something that only applies to children or to people with special needs. This is a skill that is just helpful to everyone. My husband, in his own role, sometimes just has to advocate for special equipment, or things that he needs to do his job better. We’ll just go through a few of those things that I’ve seen in my different roles. We’ll just talk about these three things. What are self-advocacy skills and why are

they important? I also want to let you all know that COSBVI is a resource for you. So, we’ll just discuss briefly how the Council of Schools and Services for the Blind help you and your amazing, bright, visually impaired, loved one, with advocacy and self-advocacy. Then I also want to discuss some practical tips on this. Identify and discuss self-advocacy opportunities for your children, and also for you. So just those three things, I am a teacher, by nature, I know in a little amount of time, there’s not much that we are going to soak in. So typically, we can learn three points. All right. Thank you, Cassandra. I’m feeling your energy. And I love that. 

So, just a bit of discussion here. What are advocacy skills? Why are they important? I used to think that advocacy was only political. I thought it meant you are going to DC or you are taking a stand on a stage, you’ve got picket signs, you’re yelling, you are getting a point across. That was the picture that came to mind when I thought about advocacy and advocating. It can be that we can get our picket signs, and we can boycott, and we can march and we can do all these things. But there are other ways for us to advocate for ourselves. So, these are skills that allow a person with a disadvantage to obtain the tools or accommodations that they need to remove that disadvantage. That’s what it is. And so, if you are at a disadvantage, if your child is at a disadvantage, then advocacy skills, any skill communicative or demonstrative, that allows them to get what they need to remove the disadvantage.

And now, I want us to just take a pause here and look at what advocacy skills can include and, recognizing that these skills are important because they empower us and they give us control over our achievements. So, if you want to turn if you want to unmute, feel free, or type in the chat, what skills have you seen, or what examples have you seen, where your child or someone that you know, has removed a disadvantage, or received an accommodation to remove that disadvantage? I will start by giving some examples.

In my role as a professor at Georgia Tech, one of the classes that I was teaching, it’s a huge class, it’s 11 sections, total enrollment of about 500 students. I have grad students. It’s a really nice production. The section that my student was in was on the second floor of the academic building, and my student is in a wheelchair. Very frequently, the elevator breaks down and while it might be a pain in the butt for those of us who can walk up the stairs, the elevator breaking down actually made the class inaccessible to my student.

And so, my student sent me an email (because there are 11 sections, I don’t personally teach, I lead the 11 sections), I was not aware. My student sends me an email the second week of class. So it turns out, the elevator had broken down three times. He sends me an email saying, “Dr. Harris, I’ve had to miss the last three days of class because the elevator was broken, and I could not get to class. How can I make up the work that I’ve missed?”

Now, what I appreciate is that my student was just asking, how can he keep up with the workload. But what I did instead was move the entire class to the first floor because the first floor did not require an elevator to be accessible. So immediately, I was like, thank you so much for letting me know that the elevator being out has caused you to miss class, because I wasn’t aware of it. So that’s the first thing. Don’t assume that people know what you need. The class has 500 students. I did not know that I had a student who was in a wheelchair, who was not able to get to class. So, just him making me aware of it helped me to empower him to get the help that he needed by letting me know he’s missing class.

Now, I appreciate that he asked about keeping up with the workload, but I can tell you, it is incumbent upon us to make education accessible to your students. So, it really wasn’t enough for me to say, oh, here are the quizzes that you missed. Here are the worksheets that you missed. Here are the lecture slides. While I could have done that, because that’s what he was asking for, it is incumbent upon me to make sure my baby can get to class. I think of all of them as my babies, I do. I have 1,250 babies at any given time.

And so immediately, I contacted our scheduler and moved the class to the first floor of the building. And while other students might have been inconvenienced about the schedule change, I don’t care, because they have access. They can get to the class, wherever it is. It is worth moving all 50 students in that class, so that one can have access to the class.

That’s the other thing about advocating and accessibility and just advocating for ourselves. A lot of times we think, I’m the only person who is being inconvenienced, or my child is the only person who’s being inconvenienced. The other 100 students or the other 200 students or the other however many students don’t necessarily have to be inconvenienced, you know, for my child, or for my student or if it’s me, but that is not the case.

Every student has the right to an accessible education, every student. And so if I’m not hurting the other 50 students in the class by moving the class to the first floor, but I am helping this one student by making class accessible, then that is what I am going to do. And so that’s what I want you all to recognize is that I need to make my needs known. And then second of all, recognizing it’s okay that other people are going to be impacted because my babies’ needs need to be known. I have a question or comment. Oh, okay. embedding the phrase. Yes, I see in the comments. Help, please. In our preschool classroom. Yes. That is such a big deal. Yes, Kim.

Kim

I work at the New Mexico School for the Blind and Visually Impaired in a life skills class, and we find that many of the parents do everything for the students. So, we encourage our students to advocate for the skills that they have like to fold the laundry, put it away, pour their own milk, make a sandwich. Sometimes the parents feel like they’re inconvenienced, because it takes longer and it makes a mess. But then you teach them to clean the mess. So, that’s one of the things that we teach them to advocate for is to use the skills that they already have. And we tell the parents that they’re going to be advocating and to please let them use those skills.

Joy

Yes, yes. 1000 times yes. Because I think that as parents, if you have a three-year-old, who is a typically developing three-year-old, you tend to still just do everything for them, because like you said, it makes a mess. They just make a mess. But they aren’t going to learn how to do these things for themselves if we don’t let them do it for themselves. 

Yeah, I see Yujia – I hope I’m pronouncing your name correctly. Yujia says, I design business dashboards at work and I always try to choose color combinations that are user friendly for people who are visually impaired with blindness. My baby who is visually impaired is very young, and I’m learning so that I can be a better advocate for her. And advocating for a senior. Yes, yes, they span from preschool to grannies. This is so true. Everyone needs these skill sets.

I can tell you another example. My son, he jokes, he is like, “mommy I ride the short bus to school, right?” He is in an autism bridge program. So, his science class specifically, at the end of the day, his science class, lets out at 4:15. But because he’s on the special education bus, he has to leave every day at 4 o’clock. And while 15 minutes might not seem like much, he needs that time. It adds up over a five-day period missing the last 15 minutes of class, every single day. 15 minutes, and then 30 minutes, and then 45 minutes and then an hour. So, he’s missing an hour and 15 minutes a week.

And he said, you know, mom, all of my classmates get to do their homework in class, they get to finish their worksheets, and they get to ask questions, but because I have to leave early to get on the bus, I am missing that every single day. Again, I wasn’t aware. I know what time he comes home. I don’t know what time he has to leave. But just him telling me that, I was able to talk to him and then I set up a meeting with his teacher. I had him express to his teacher that he’s said, “you know, I’m leaving 15 minutes early every day, and this is causing a problem with my learning.” This is one of those instances where I can’t ask the bus driver to leave 15 minutes later. That wasn’t an option. But what we did do, the teacher had him pack up his things so that he could go to the bus straight from science, which meant on those days, he’s only missing five minutes. And twice a week, I just go and pick him up. And so that way, on Mondays and Thursdays, he gets to stay the whole class because I pick him up. And on the other three days of the week, he stays until 4:10 because he’s dismissed right from science to go to the bus. So it was a compromise, but that allows him to get that extra instructional time that he needs. And it was again, just a matter of him letting us know. 

What other examples have you all seen? I’m loving the chat. Have you all seen other examples in your work? Or in your play for your kids?

Malika

I’m a parent and I have a son with CVI, and he’s on the autism spectrum. And one of the cool things is, he is nonverbal, is on his AAC device. I pushed really hard this year for his staff to incorporate a button “stop.” Because for him, he knows what stop is. If I tell him to stop at home, he’ll instantly stop. I think sometimes when the work was getting too hard, or he needed to rest his eyes, he didn’t have a word on that screen to say, stop. They always wanted him to say break. And I’m like, that’s two different things. He can say, “stop” and then request a break if he wants to do something. But sometimes he just wants that activity to go away, because it’s too much. I’m happy because he uses it a lot. I’m homeschooling him now and when he is overwhelmed, all I hear is, stop, stop, stop. So, it’s clear, and it’s a stop sign, but for me, I wanted him to have that knowledge of stop, because that transfers into the community. If you see a stop sign you stop. Someone tells you to stop, to kind of breathe.

And I think it’s helped him a lot, because I think when they’re nonverbal, and I’m guilty of it as his mom, you just automatically do more, you don’t wait for their response. And this year, he’s 10, He’ll soon be 11. I’m like, Oh my God, you’re about to be middle school. This can’t continue. So, I need you to tell me to stop, I don’t want to do this. So, for me, that was helpful to kind of think about that because I have an older kid that’s on a spectrum and I didn’t do those advocacy things for him. So, he got stuck waiting for someone to tell him to do something. So, the younger one, I’m like, we’re not going to do that, you’re going to start to be able to make some of these simple decisions so that I could fade out in some areas and then when you need me, then I can bump up my support in the other areas.

Joy 

Exactly. And that is so important to just recognize that our babies are getting older. Yes. And you don’t want to have a young adult, you know, teenagers, young adults just waiting. Yeah.  And I see, Lisa, that you would like to ask a question.

Lisa

Joy, it has been an unmistakable pleasure to hear you. You have such a calming energy, I’m sure people have told you that. As a spiritual person that’s what I got. My role is very unusual but I’ve been advocating since I was a child, because I have ADHD. Now, that has nothing to do with the discussion tonight, but I’m advocating for a senior gentleman, intelligent, little bit of an overly stubborn gentleman who’s getting into his skills. We live in New York, and I’m his advocate and health proxy. It’s a role I very, very, unmistakably got into. I’m not a mother, but I am a godmother and I advocate for my god kids. So I know, they’re excel learning.

But I wanted to find out how you advocate in the population with the ability to learn how to understand the issues going along with blindness, for seniors, when you’re first getting into the role of it. It’s kind of a confusing way to describe how seniors that are learning later in life, learning technology, how you advocate for them. I need to come up with a soluble way of asking the question. It’s new, this is a new job and something new I’ve never done except I’ve advocated in my business, and personally. I’m very interested in learning. And I love the way it’s laid out. I’ll be quiet now.

Joy

I want to make sure I understand your question. So how do you advocate for an older person navigating vision loss as a senior?

Lisa

A total vision removal. I mean, literally, it’s a complicated story, which we have no time to describe. Having all my life having to battle with education and timing and learning disabilities. Maybe I fell into this position at the age of whatever 50+, and because of my advocating ability, I’m hoping I helped many others, but I have so much to learn, and how do you help a senior who has health issues, who’s fallen into the spectrum, but has means but doesn’t know how to access them? So, lots to talk about, I don’t want to dominate the call, but I’m loving listening.

Joy

Okay. So, this is something that of course, will help everyone, but it’s especially relevant for seniors. Are you already working with your local vocational rehab office?

Lisa

When I say vocational rehab, that would be something like the Guild.

Joy

Well, in addition to the Guild, and if you also could speak more, but in Georgia, for example, we have vocational rehab services that are state-funded.

Lisa

We have that, too.

Joy

Okay, and then there’s a special pot for people with visual impairment. So, I know in Georgia, we do have a special pot for people who are visually impaired. I think New York probably would, but it’s worth asking because that opens up a lot of resources for your client, for the gentleman that you’re advocating for. And for others, who are suffering for visual impairment and by special I mean there’s money for special tools, there’s money for special services, like orientation and mobility training, and services, there’s also money to start a business. You know, if you just decided, in my senior years, I want to start a business.

That money, of course, is for everyone on this call or for any person who’s visually impaired, or any person who needs vocational rehab because of a disability. There is money specifically for things like starting a business, starting a company, in addition to money for assistive technology. And what’s really cool is there’s money for training. So, in addition to orientation and mobility, if there is something that your loved one or the person wants to learn, your vocational rehab, your state-funded, voc rehab, has money for those types of services. So, it’s a great place to start.

And then the next place that I have found, is just in the general populace, helping to educate people, when people make insensitive comments, or when people are trying to help but do things that are not helpful. Those every day, micro-training sessions are also just very helpful. For example, I hosted a workshop and one of the workshop attendees was deaf and so he was using an interpreter. I did not know just how mentally taxing it is to have to look at slides and see an interpreter, and so he just pulled me aside and said, I need more pauses. And that was a micro journey for me that made a big difference. I needed micro training because if I am looking at slides and reading the slides and listening to a person talk at the same time, that’s not the same as having to look at an interpreter to hear what I’m saying, and then read the slides. So,

he was missing a substantial portion of the comments and the content. And so I’m saying that micro training was big.

I have a cousin who is on the spectrum as well, and she was working on a job and people made an insensitive comment. So just stepping in and saying, “no, she’s doing the best that she can, let’s be patient.” Let’s be patient with her issues. Or, if you see people being just insensitive to this gentleman, you know that micro-training, calling people out makes a difference? Yes. Go ahead.

Lisa

I’m not trained as a professional advocate.  It’s just a natural talent. I work with a gentleman who helps me, we work in business together. Advocating within a family is complicated when you’re advocating for someone’s care who doesn’t want it, or is resistant, or has to be relocated because they no longer could live alone. And I have to be careful what I’m saying because it’s public, I don’t want to divulge, and as the advocate, I must be confidential. So, that’s what I’m interested in, and this may not be in this seminar, but I’m just open.

Joy

So, for example, maybe this person should maybe be an assisted living facility or a full-time care facility. Is that one of the possibilities?

Lisa

It’s one of the possibilities, but there’s a family dilemma. And again, obviously, I’m going to understand you don’t want to divulge anything. It’s a battle to see how you can best be of service. And you can’t force anyone.  New York City is the most liberal state, we have everything possibly available.  If somebody’s going to be resistant, that’s their path and they need that help. But just learning. I don’t know if the whole seminar is based in one state, but it’s good to take nationwide and see what’s going on since the COVID. And I’m here to learn.

Joy

Right. And I do want to ask if there is anyone on the call who has had that type of experience? I can tell you for my grandfather, as he lost his sight, and as he lost his independence, because he had so many family members, we were able to just pull together and provide around the clock care in the home. But, I recognize when you have eight kids and a gajillion grandkids and great grandkids. , When you don’t have that type of familial support just speaking to the family members, sometimes that difficult conversation has to be had. It just does, especially if you recognize the person is a danger to themselves. My grandfather had become a danger to other people, because he was still getting in a car and driving.

Lisa

Now that’s not the case with this gentleman. He’s stubborn and is fiercely independent and as to give someone their dignity. I’m a part of the Guild because I’m part of the team there. Because I’m learning. I have never worked with a blind person in my life. I find it fascinating. I do not feel bored. I’m working at the Haskell library. If anyone doesn’t know what the Haskell library is, that is a place where I feel as a sighted person, there’s, oh, my God, their education is so up there. It’s like- this sounds terrible. No one wants a disability, but if you have to be at that library, you have to see all those people teach the blind how to function, right? I can’t say names. But you have to see what their training is like and how they’re educated since birth. Some people don’t ever want to fall into it. Some people fall into it later. I’ve never experienced it. And I’m not here to dominate the evening. I’m here just to learn.

Christine

I’m really excited about being here, especially for this topic of general advocacy. I’m a mom of a nine-year-old who’s got CVI, and he’s in this in phase three and I’m super excited about hearing about this. He doesn’t quite understand it and the school has not provided any accommodations, hasn’t even inquired. He has an IEP, but not under VI and we’re going to Perkins to get our evaluation so I’m super excited. It’s been a process in the making, and I’m super excited.

Joy

I’m glad you mentioned Perkins. Perkins is a COSBVI member and that’s what I wanted to talk to you about. For those of you who have younger kids, preschool through 22-23, graduating high school and going into college readiness. COSBVI is an organization that can help you. We are a collection of schools and agencies that serve students who are blind or visually impaired. Our website is cosbvi.org. (Council of Schools and Services – one S, Blind, Visually Impaired dot org). We do connect educators and leaders across the field to support children and their families. And the members do teach self-advocacy on a daily basis. So Perkins, Christina, is a COSBVI member school.

Lisa

We’ve been really lucky that Texas just has it in for VI kids. I mean, there’s two cases, I don’t want to say, I should probably not talk anymore on that because they’re all in legal. But the Health and Human services within our state government, within our state, at first they said “no, he doesn’t have an IEP, so doesn’t qualify for help. But a really great person out of Austin told me, “no, he does qualify because he’s got a diagnosis from the optometrist.” The gentleman, the case manager has been so helpful and recommending some stuff.

Joy

Have you also considered the Texas School for the Blind?

Lisa

He’s in phase three and the school has to pay for it. In Texas, you don’t qualify unless the school identifies you. And I think he’s fine here. I mean, you look at him and you wouldn’t know he was blind. It’s CVI. It’s just consistently, inconsistent. I mean, it is blindness, but he can still function with supports.

Joy

I just see a question- Could I put the link to the bill of rights for all children with visual impairment? Yes, I’m going to put this in the chat right now. So, things like what they told you, Christina, he doesn’t qualify for an IEP, that’s one of those things if we don’t know for a fact that our students qualify, they will tell you anything. Basically, because either they don’t want to go through the trouble, and by them, I mean, your your school leadership,

Christine

The state of Texas, really.

Joy

Yes, and that’s what it comes down. The state will tell us anything. And I see Malika, you have a question?

Malika

When she does go to Perkins, all I can say is, whoever is evaluating her child to help them clearly lay out what accommodations that her son or daughter needs in school. That for me, especially my son just got the CVI diagnosis last year. The pushback I got was that I had to have multiple doctors and multiple reports. I finally got a doctor that was like, look, he needs this type of tech, he needs this kind of desk, he needs this type of background. Even with all of that, I still got the pushback from the district like, “Oh, I’m sure they have those materials laying around the school somewhere.” No, they don’t. Ari’s the only kid in school with CVI. So, be prepared for that, Christine. You can come to Perkins, great, and you’re like, we’re gonna get all this stuff?

Christine

Oh, no, no, no, no, no, it’s been like, five years in the making. And I’ve just got all my chess pieces in place.

Joy

That’s a good point. Just ask for that outline of the specific things.

Malika

And then hold them to it. Say this is what this expert is saying.

Christine

The big problem is you’ve got to have money to hold them to it.

Joy

The thing about it, though, is that the state is obligated to educate your child. And so, what I have also found is that sometimes people do have to threaten lawsuits. And yes, I know God bless money. Sometimes you do have to threaten legal action, because the state is obligated to provide education to your child. Whatever that education looks like. And they can’t just say, “well, I’m sure they have it laying around somewhere.” I’m also really surprised that you haven’t been able to tap into the resources at the Texas State School for the Blind (TSBVI).

Christine

That’s another story. But thank you so much Malika. Message me on Facebook.  I have a whole contact network. I’m just laughing at the joke about “I’m sure they have that sitting around!”

Joy

Lies, right? Lies. Just quickly, this Bill of Rights for Children with Visual Impairment and their families. The link that I put in the chat was composed by superintendents, within the Council of Schools and Services for the Blind, and the American Association of Rehabilitation for those who are blind or visually impaired – AAR. These are experts. So, they’re running entire schools and districts for students who are blind or visually impaired.

So, this Bill of Rights is coming from experts who know what your children, and what you, have the right to. I will download it and email it as well to Lighthouse Guild if you need it, you can have a copy. Children, including those with multiple disabilities, those with visual impairment and those with multiple disabilities, have the right to early intervention.

For example, they have a right to a functional vision evaluation, and a learning media assessment by highly trained, qualified teachers. Parents and guardians have the right to assistance in interpreting the educational implications of the diagnosis. As a result of the Disabilities Education Act, in the case a child is blind and visually impaired, the IEP team must provide instruction in braille, for example. Children and families have the right to be fully informed about the ECC, the expanded core curriculum.

Also, children have the right to receive school materials that are accessible. Going back to Malika’s point, just understanding the background that your kid needs if they have CVI. I had a student who just needed stuff in large print, you know, but they have the right to materials that are accessible. They have the right to test taking materials that are accessible. It is also the right of children and families to a full range of educational placement settings discussed at the IEP meeting. And then children with visual impairment have the right to teams that enthusiastically assist them. Yes, enthusiastically assist them. Don’t have a bad attitude.

Children with visual impairment, including those with multiple disabilities and deaf blindness, have the right to be perceived and treated as equal, active, and contributing members to their communities, classrooms and schools. As with children, their engagement through belonging increases the collective value of each setting in which they participate. They have the right to be contributing members of their community. That goes to an earlier point that was made about just having kids work and do stuff for themselves, because how else can they contribute, if we don’t allow them to do things for themselves? That is a big part of what advocacy is. We want that. So, I will email a copy of it to you. And if you were able to download it, great, but I don’t want it to be inaccessible just because you don’t have a Google account.

That’s the type of thing that we do, in addition to advocating for kids. In addition to college prep, all the way from visually impaired preschool services. We have agencies who help with preschool through helping you to transition for college. And even if your child may not go to college, just helping to be a contributing member, at whatever level they can be, physically, emotionally, mentally, intellectually- that’s what we want. 

Then thinking about three very different ways that you might be able to help your child and youth advocate. One way, we spoke about political, supporting the Cogswell Macy Act is big. The primary goal of the bill is to ensure that we accurately count students to ensure that proper funding is allocated. Now, with the Cogswell Macy Act, we’ve been working for the better part of a decade perhaps, to get this – it’s a lobby. We have supporters in Congress. If you ever had the opportunity to talk to one of your congressional representatives, just mentioning that you support the Cogswell Macey Act, and that they should support it is a big deal. The Act actually does not require any money. All it does is be sure that our kids are counted accurately.

So, for example, if you have a child who has autism spectrum disorder and CVI, right now they’re only counted as having autism, which means that the funding that they should be getting to support their education and the tools that they need to battle the CVI, the school is not getting that because they’ve only been counted with autism. Or, if you have a child who is deaf-blind, or just a child with multiple disabilities, the state gets to pick, or the teacher, whoever’s doing the assessment, gets to pick which disability is counted, and they only get that one disability. So now, there are other disabilities and their visual impairment is not counted, and hence, the money’s not there. But the money is there. They’re just not getting access to it. So, that’s a really big thing. Just making sure that our students get access, and is this info nationwide? Yes, this does count nationwide.

Another opportunity for advocacy we mentioned is the expanded core curriculum. You might want to include that in your child’s IEP.  I just put a link here, with paths to literacy, there’s talk about different areas of the expanded core, because life skills are a big part of the ECC. This might be a way for you to advocate to make sure that your child is getting life skills, in addition to academic skills as part of the IEP.  My son, for example, has just a writing goal as part of his IEP, because that is a life skill, being able to write for 10 to 20 minutes at a time. He’s going to college, he’s going to have to be able to take notes. And just the act of making that part of his IEP, then required the school to provide an occupational therapist to help him with that life skill.

So, when you all are able to have these things as part of their IEPs, now the district, and the school, is obligated to provide the service to help your child be successful in that area. That’s why you want to think about incorporating things like once you put it on paper- write it down, and then you have legal grounds to make sure that your child can advocate, and that you can advocate for your child.

Similarly, if it’s an older person, or an older child transitioning to college, or a child transitioning from high school, having written plans in place is going to help. Then also ask your child what help they need, and help them identify that. 

Then asking your child what they need. Sometimes, it’s just having a conversation or asking the older adult that you’re advocating for, “what do you need?” Because understanding and like Malika saying, “my baby needs a stop button.” Recognizing, just stop the world, I want to get off. I need to be able to tell you to stop. They’re simple, but they give you life. They give your babies life. They really are life changing. Just having those conversations to say, “what is it that you need?” And then, okay, this is something that you can discuss with your teacher, if need be, or this is something that I’m going to discuss with your teacher, or this is something that I’m going to take to the principal, or this is something that I’m going to take to the superintendent, or this is something that I’m going to take to a lawyer, you know, because there are levels. A part of self-advocacy is also recognizing when you have to get the legal system involved. I am positive. I know because I’ve worked with lawyers who are willing to just say, “I’m a lawyer, and I know that what you’re doing is illegal” is enough. You don’t even have to have that money. I know lawyers who do that type of pro bono work. Leverage is everything. 

Lisa, just points out ‘I’m a trained life coach in an organization that helps you with that leverage.”Leverage all the resources you have.

Are there other questions or comments that people would like to mention in the time that we have left? I do appreciate you all sharing your experiences. I know everybody has a horror story and a journey. It’s all part of the journey. Is there anyone else who would like to share a question or an area in which they’re working to help their students or the people that you love, the people that you’re working with?

Laura

This is Laura from Texas. And I do have a question. I have a 14 year old son, who is deaf-blind. But we didn’t know about that. He’s always been identified as hearing impaired and visually impaired. And it wasn’t until we had an outside evaluation, that we were advised to contact our local Deaf-Blind Project in Texas, which we did. That wreaked total havoc with our school district. So much to the point that, we asked questions about, shouldn’t he be identified as deaf-blind? Aren’t you concerned about a dual sensory impairment? The answer was no. But fast forward eight months down the road and a public information request from the School for the Blind, he’s been on the deaf-blind child count for 11 years.

We have been through mediation. We filed due process and went to mediation, and then the school took us to mediation. How do you advocate through this thick process? Because clearly, we haven’t been effective in what we’ve been doing. And we don’t threaten, and I don’t yell and I don’t swear. I asked very specifically for CVI goals. I asked for features and comparative language, and we were told, “Oh, he’s not ready for that yet.”

We asked for a calendar system. Oh, the TVI will do it. She never did. We asked for visually accessible materials. He didn’t get them and the TVI said, “well, I can’t adapt those literacy materials from Saxon Phonics, so you’re just out of luck. And so, what do you do? I reached out to Haben Girma, who said, you need to find a COPAA attorney. We had a COPAA attorney.

Where do you turn when all of it just doesn’t work? How do you find someone to pick up your child’s cause, so to speak, and who has experience with children who have visual impairments and in our case, visual impairments and hearing impairments? Because I think they’re very good at a child with autism, a child with dyslexia, a child with one thing, but when it becomes complicated, they don’t know. 

Joy

Now, remind me which state did you say you were in?

Laura

We are in Texas, and we actually asked our district to invite in Texas School for the Blind and Visually Impaired through outreach. They did. But, then our school dismissed them 21 days later, and so we never had that interaction. Texas School for the Blind has been great, you know, helpful in at least helping us understand what it is, understanding a few of the resources in Texas. They cannot observe instruction, they cannot participate unless they are welcomed in by the school district. So, in our case, the school district said we were going to, but we’re not going to. And I am certain that that’s because, you know, no one necessarily wants to air their dirty laundry.

Joy

So, tell me, how does it work in Texas? I know when every state is different. Is it possible for your child to become a student at Texas School for the Blind?

Laura

Only if the school district refers them. In Texas School for the Deaf, or the regional day programs for the Deaf, all of the families there can self-refer. Marshall doesn’t sign, he doesn’t see well enough to sign and was never taught sign language, that’s the big thing. So, he wouldn’t be a candidate for the Regional School for the Deaf. But, Texas School for the Blind, you have to be referred by your district. In other words, they have to say we cannot meet your child’s needs.

So, we withdrew him at the end of last year. He’s homeschooled, not effectively, but that’s where he is now. So, I will ask them, but I’ve already asked once before and was told no. So, how do families get things changed? I don’t know how it is in other states, but our Texas Education Agency did not give Texas School for the Blind any oversight or regulatory power. So one, they don’t inform families that every year their sweet bundle of joy has been listed on the deaf-blind child count, just to ensure that in case the district doesn’t tell them. There is no obligation to do that. And there is no obligation to accept the child into the school for the blind, let alone get a referral. So when you talk about legislative effects, you know, where do you get it changed? What are other schools for the blind? How are they in other states? Can a family refer their child there? Or does it take the public school?

Joy

So, in many other states, a family can decide to refer their child or they can just just like for the School for the Deaf, a parent can self-refer. In a lot of other states, a parent can refer. But what I’m hearing is, you have to show that the state is not adequate, that the school is not adequately meeting their needs. But actually, it’s incumbent upon the school to show that they are.

Christine

No, in Texas, the school has to ask them to get involved. 

Joy

The school has to ask TSBVI to get involved.

Christine

Yes.

Joy

But if the school has to ask them, they have to ask because they have decided they cannot meet your child’s educational needs. So right now, are they arguing? If you had to homeschool your child, if you pulled your child out to homeschool? Are they arguing that they can meet your child’s educational needs?

Laura

No, I don’t think they want to have anything to do with TSBVI. In other words, when they started the referral, they asked me questions. I gave them a list of things with respect to vision and deaf-blindness that I thought our whole team needed. Instruction, education, enlightening, whatever the right word is, and specific questions and needs for our son. And those were referred, but there’s also the school district’s attorney that’s involved. I think he is orchestrating this, and I’m not really sure why. Because we live in a rural community so it’s not like we have a great option to go someplace else. If we go to a neighborhood rural school, we are still served by the same special education Co-Op. So, there’s not there’s not a benefit to anybody by kicking the can down the road.

But I just wondered if there were other states that parents could self-refer to, because then is it time to write an OSEP letter and ask for a Dear Colleague letter? Is there a way that the federal government can say that they have to mandate that schools for the blind consider admissions from private and homeschooled students

Joy

I tell you what, and Christine just wrote “talk to Mara LaViola.” I’m also going to talk to Emily Coleman, who is the superintendent of the Texas School for the Blind. And I’m just gonna ask Emily, what are your options? And the same for you, Christine, since you’re both in Texas. I’m just gonna ask her to level with me. Have that conversation that you can have over the phone that you can’t have in an email. I know that Emily and TSBVI know that they want to help the students. They’re at a disadvantage, as well, by not being able to get to the students that they need in order to help.

My first inclination is that the district doesn’t want to let the student go because the money follows the student, and a lot of cases for a lot of states, and I have seen that across the country where the state doesn’t want to lose the special education funds because they don’t want to lose the money. I am just going to make a note.

So, the question is, how can parents get their kids into a school for the blind for example, if the district is not cooperative? Or, how can parents get help from the schools for the blind if the district doesn’t cooperate?

Laura

Right. How can outreach help support a student in the educational environment when the school says no?

Christine

Okay, I did the same thing. And I wrote to TSBVI. And they sent me back a very generic, Typical Top 10 Things to do for a CVI Kid, that was not specific to my child. They’d never met him. I mean, you know, you can’t really…

Joy

We also have an outreach forum coming up. I’m sure that we will have the outreach director from Texas at the forum, and so I’ll have that conversation as well. I did put my email in the chat, also, in case you all want to reach out, but I will see how to see what I can find. Because there may be some things that you can say that you can’t put in writing. Sometimes you can say they you should contact this lawyer, even though you don’t want to send a parent that, because then it traces back to you and then somebody loses their job. But, they can tell me and I can tell you because I know I’m not gonna lose my job. We all have horror stories and journeys. I’m taking a list of action items here. Is there anything else I can do to help?

Malika

I’ve done the journey of at least getting the district to write a referral to get my son at least an assessment at a school for the blind. But the pushback always came back to where he’s at is more than adequate to meet his needs. So, I think it was to appease me – he is really not going to get it. My question is, is that typical for a kid with CVI? Is it hard to get a kid with CVI into a blind school?

Joy

Yes. It is a lot harder to get a kid with CVI in, and that’s something that we struggle with at the schools for the blind. We struggle because they’re not blind. They have a visual impairment, but they’re not blind. That’s the hard part about CVI. You can’t say that they are. But that doesn’t mean that they don’t need help.

Christine

I was thinking about saying to my congressman, “he’s not blind, but sometimes he has moments of blindness, and you sure would not want him to be too blind when he gets behind a car. He might have wanted to rethink the whole…

Joy

We had a legal session on CVI as well, just to help understand the legal ramifications. It’s a minefield – it’s a tough one to navigate. And hence, this is why the response is we will just change the background, or you’ve got this stuff laying around, so your kid can learn. But I think also, we need to do more work on CVI to see how we can support the kids, even if it is through outreach. If the schools for the blind can’t service them directly through outreach in the classrooms or in the district, it would be helpful. But the districts also need to cooperate.