Neurological Visual Impairment in Children and BLVS

Perla: The Department of Blindness and Low Vision Studies at Salus prepares professionals that work with individuals that have visual impairments, and we do this through master’s and certificate programs in four disciplines. We prepare teachers of children with visual impairments, which focuses on education from birth to 21 years of age. Visual rehabilitation therapists, who focus on independent living skills. Orientation and mobility specialists, who focus on safe and independent travel. And low vision rehabilitation specialists, which is actually our oldest BLVS program at Salus, and which focuses on maximizing remaining vision, with or without optical devices.

In addition to the rapid programs, we provide continuing education in collaboration with Salus' Department of International and Continuing Education. And that is geared toward practitioners and to support their efforts to stay up-to-date on best practices in the field. And the course that we are here to discuss and highlight is the perfect example of those projects.

Perla: It's unique for many reasons. Number one, this was the first time that Salus University offered a micro credential. And micro credentials, for those who are not familiar with the term, are skill-based courses where participants can earn a digital badge and that digital badge can be shared electronically with employers or organizations, consumers, anybody.

And what happens is that when somebody clicks on that LAA digital badge, they can see all the competencies that the holder mastered, how long the training took, where it took place and basically what they had to do to earn the badge. So it's a very valuable tool and it's very appreciated, particularly in the education field. We were basically the first ones to develop a digital badge with this course.

The other reason why this course is unique is because when it was developed in 2018, Salus was one of the first universities back then to respond to the field's need for updated knowledge and skills in this area. In fact, in 2017 we had conducted a survey nationwide of practitioners in the field of teachers for children with visual impairments, and orientation and mobility instructors, and that yielded almost 300 responses. At the time of those who responded, about 80 percent had students with neurological visual impairments in their caseloads, but only about 26 percent felt prepared by their universities to serve these children. So our first offering of the course was our commitment to those practitioners to support them in their work.

And lastly, another reason why I think this course is so unique is because our last offering, the one we are here to talk about, represents a unique partnership between Salus and the Ohio Chapter of our professional organization called The Association for Education and Rehabilitation for the Blind and Visually Impaired.

Alstrin: This course specifically is looking at NVI in children. NVI is a really broad term; it encompasses a wide range of conditions. These can be congenital (you're born with them) or they can be acquired. Anytime there's a disruption, an injury, or basically any condition that impacts processing of vision within the brain, that’s is a form of neurological visual impairment. It's a visual impairment not related to the eyes or it's visual impairment beyond the eyes.

Some people might have heard of cerebral or cortical visual impairment. Both of those are called CVI for short. That's a much more well-known term, but both of these are forms of NVI. Regardless of what you call it, this type of visual impairment is one of the main causes of visual impairment in children in all developed countries in the world, and it's generating a great deal of research in our field. Therefore, the need to stay on top of this because it’s very real.

Alstrin: Early intervention for kids that have an NVI is critical. Mainly because of brain plasticity, there is a potential to develop some neural or neuron connections within the brain to go around areas of injury or that are compromised. So anyone working with children at all, in any field, when the child has a condition affecting the brain, they need to be aware of NVI.

For example, vision professionals serving schools are a very unique entity. We typically are the only professionals in a district, or a region even, that can explain the implications of living and learning with a visual impairment. So we also end up being a bridge between education and medical communities.

That said, each state has a slightly different spin on services for children, which is fun. So when a former student stepped up and had this idea to form a cohort of vision professionals across her state of Ohio, we thought that was really super cool.

Wills: As Kathy mentioned, I first took the class in March 2020, and literally I think I wrote to all of my colleagues anywhere that would listen to me, you've got to take this course. It is amazing. The next time it comes around you so have to take it. And then I became the president of Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) and you meet everybody in your field. And that's when I realized everybody needs to know the knowledge that I now have. By no means am I the expert. But I just kept telling folks this is just a game changer.

I reached out to the University and I was like, you know what, have you ever considered maybe a state cohort? The goal here in Ohio would be that we now have a small body of people who have the same understanding of neurological visual impairment and that neurological visual impairment in itself opens up this huge category of children that we can service that need us and the hopes would be that these kids would no longer fall through the cracks.

The cohort isn't quite over yet, but in Ohio we have this ad hoc committee as a part of our Ohio chapter. And so we're working on a referral document that we can share with all TVIs and O&Ms across our state so that they can educate the district that they're working with. So everyone has a much better understanding of those red flags that would indicate that a functional vision evaluation is needed. But then more specifically, what are those red flags that would indicate that we have to have this neurological visual impairment focus?

And then in the fall, we're actually going to do two different presentations on this cohort. We'll be sharing the information that we've learned in the cohort, and how that has changed our thought process and how this is opening the doors for students who might have potentially not been identified.

Alstrin: We have to recognize that the majority of learning that happens for kids is visual. Whether that's incidentally watching your family do things around the house, but also the way teachers present their lessons, tends to be visual. We learn a lot incidentally through our vision.

When that's compromised or impaired in the eye, or in the brain, vision specialists like us need to step in to educate schools and families about how to deliver equal access to education, to their worlds, in non-visual ways.

We also directly support students to gain the skills needed for them to live an independent life to their fullest potential. So understanding how to do this for a child with a brain-based visual impairment is a very new area that's a bit different for many of us.

Wills: From my experience, we'll get eye reports from an optometrist or an ophthalmologist, or maybe even just a parent will say to us, we went to the eye doctor and their eyes are fine. They don't need glasses. But then you as a teacher, you still see these little things that are happening that the student isn't identifying. I mean, if there was nothing wrong with their vision then they should be able to identify that sight word. So you definitely see sometimes there's a gap between what it is that the eye doctor has said and then how the student is functioning.

One of the recent things in Ohio that we are hoping to get changed is that sometimes you'll get an optometrist or an ophthalmologist who recommends classroom accommodations because of vision. That's perfect. It's great. We need to have those. But another piece to that would be recommending that the district contacts its  teacher of students with visual impairments so that they can do the functional vision evaluation, and then they can identify those strategies and those supports that the student needs in order to access the curriculum.

So often we see that kids are left underserved because of that silo effect. We might see neurologists that may not have recognized the need to diagnose a visual impairment. I also see this with optometrists. When you say that a child's vision is fine and they just needed glasses or maybe they didn't need glasses, I see sometimes there's that breakdown as well, where maybe they then needed to go to the neurologist or maybe they needed to go to a developmental optometrist.

Either way, schools and agencies really need to be aware of this brain-based neurological visual impairment. And so that's really my job right now, as a TVI and an O&M working in the district, not only educate my colleagues, but also educate the people that work in the district. I did a presentation earlier this year on improving that child find process. And I came up with a whole list, the school nurse for example, who is going to hear some of these red flags before the classroom teacher is ever going to hear it.

And sometimes a parent will share an optometrist's report and say, we went to the eye doctors and this is what they said. And that optometrist's report might actually have some key red flags in there that indicate, hey, we need a functional vision evaluation. But unless the district knows what those red flags are, that's where that breakdown in communication happens, and then that's where that breakdown in the child find process happens.

Alstrin: So they do also take the class, along with education professionals, and that's really cool. We really like that. When clinical and medical professionals take the class, they can gain a deeper appreciation for the complexities of the visual system, beyond the eyes, and how critical it is to catch that early and document it.

With these NVIs or CVIs being a relatively new phenomenon, they're a very fast-growing diagnosis and we don't yet have a good global understanding or a consensus on the terminology. So it's really critical that we have medical professionals making early referrals to pediatric neurologists and intervention programs, and that those people are then aware of brain-based visual impairments so that they don't just stop looking and not qualify the child because they don't need glasses.

Whether or not that diagnosis is specific, or if a vague indication of NVI is there, that can really help us begin our interventions. And having opportunities for medical and education professionals to collaborate is invaluable.

Wills: Child find is a passion of mine. Every school district everywhere, they have procedures in place so that they can identify students who potentially are in need of special education services. Some of those procedures include  hearing screenings, vision screenings and kindergarten readiness. So we already have some of these little screenings in place.

But when we talk about educating districts, as a TVI, I work with a lot of districts, but I do offer, can I be a part of that vision screening? And sometimes I can do that. But when I can't do that, I'm sharing all of this information ahead of time with those other people that are going to be on the front lines during this process.

Whether it's the school secretary that gets a note from the neurologist or the school nurse. She's doing her job by filing that information into the student's file. But unless she knows that this process can move further, that's where the child find process breaks down.

So it's a part of our jobs when working with district that we're educating everyone in the staff to make sure that the child find process doesn't break down and people in that process are educated and know what the next step is to identify the student who is potentially in need of special education services.
 
Alstrin: This NVI is really growing in main part due to us rescuing premature infants earlier and earlier. And many of these very delicate premature infants have experienced brain bleeds or oxygen deprivation, and perhaps developmentally they're doing fairly okay. However, what we're finding is that there are often impacts to their use of vision.

Something else that's really important for medical personnel to know is that the federal definition actually has broadened since 2017. We clarified the eligibility statement on the definition for visual impairment, and it's helping to capture some of these kids that were falling through the cracks.

We now look much less at quantitative data, such as acuity for qualification or a degree of field loss. What we really need now is more qualitative data and qualitative criteria. So the law now says visual impairment, including blindness, means an impairment in vision, that even with correction, adversely affects a child's educational performance.

This term includes both partial sight and blindness. And the law goes on to clarify that any impairment in vision, regardless of significance or severity must be included. So that can include children with a vague NVI or even convergence insufficiency.

Wills: This is my favorite example to give when I talk to people about this course. So I was taking that course in March 2020, and then that summer I got a referral for a student. And so I went in, I mean, and it was COVID and we had separation and all of that. And until taking this course, I would've said to you, and I did say in that moment that this student does not qualify for special education in regards to vision. There were definitely other needs, but I just kept saying, well, wait, but vision is the strength here.

And I said to the director, I know I'm telling you that this child is using vision in order to access the curriculum, but I'm also telling you there's something else going on here. It's vision related and I don't know what it is. Because I had this wonderful course, I think we're all still just coming to terms with all of this information.

So I asked the district, I said, please, even though I'm telling you that this student doesn't really need me, I know that there's more puzzling questions here. Just don't kick me out. Let me come into the classroom. I want to do more observing. And I did want to look at assistive technology. I'm a huge fan of assistive technology. And I thought I could get a different tool to help this child be a little more independent.

And in doing that assistive technology evaluation, that's where I started to see the breakdown in this visual information. And so I went back to the team and I said, I know you can't edit an evaluation. So can I just do another one? So I did a whole another evaluation. And for sure, this student definitely qualifies as a student with a visual impairment under that neurological visual impairment.

And it was a great team effort. I spent hours one day at Panera with his classroom teacher and we were looking over all of the course information from Salus and I have my book with all the Post-its in it. And then we're looking at brain scans and brain maps and what we know about the visual pathway and where things are processed. And then some of those other needs of his.

So I would say we definitely need the collaboration piece between education and the medical world, but in order to truly identify the needs of my student in this example, it took a team collaboration of multiple people sitting at the table, looking at language and vision and fine motor and gross motor. Collaboration in this really is the key.

Perla: I think that Staci perfectly illustrated that courses like these are not the type where you just listen to some interesting information and that's it. Courses like these have very direct applications and implications for practice and can directly affect children's education, their families, and the schools where we serve. So that makes it very unique.

Chang, M. Y., & Borchert, M. S. (2020). Advances in the evaluation and management of cortical/cerebral visual impairment in children. Survey of ophthalmology, 65(6), 708-724. https://www.sciencedirect.com/science/article/abs/pii/S0039625720300497

IDEA. Definition of a Child with a Disability: https://sites.ed.gov/idea/regs/b/a/300.8 IDEA. 
Determination of Eligibility for Special Education:
https://sites.ed.gov/idea/regs/b/d/300.306

IDEA. Eligibility Determinations for Children Suspected of Having a Visual Impairment Including Blindness under the Individuals with Disabilities Education Act: https://sites.ed.gov/idea/files/letter-on-visual-impairment-5-22-17.pdf

McDowell, N. (2021). A review of the literature to inform the development of a practice framework for supporting children with cerebral visual impairment (CVI). International Journal of Inclusive Education, 1-21. https://www-tandfonline-com.libsalus.idm.oclc.org/doi/full/10.1080/13603116.2020.1867381?scr oll=top&needAccess=true

Salus NVI LiveBinder:
https://www.livebinders.com/play/play/2360226?tabid=dc33f40a-f9bf-3fe3-bb2c-5214654c979f