Editor's note: This text-based course is a transcript of the Evaluation And Treatment Of Cerebral Visual Impairment Podcast, presented by Karen Harpster, PhD, OTR/L; Dennis Cleary, MS, OTD, OTR/L, FAOTA.
**Please use the handout to complete the quiz.
- After this course, participants will be able to:
- identify how a CVI diagnosis is made and the medical history that increases CVI risk.
- identify screening and assessment tools used with children with CVI.
- recognize the evidence for interventions for children with CVI and intervention strategies used to promote independence during daily activities.
Dennis: Welcome, everyone. Thanks for being with us today. I am here with Dr. Karen Harpster, who is the director of research for occupational therapy at Cincinnati Children's Hospital in Cincinnati, Ohio. Could you just tell us a little bit about yourself and how you came to be in the position that you are in?
Karen: Sure. Thanks for having me. I am an occupational therapist who practiced for quite a few years before I figured out what I wanted to do in life. When I realized what an occupational therapist was, I decided that not only did I want to get my degree in OT, but I also wanted to do research. Originally, I wanted to learn more about sensory processing in kids with autism, but then when I came to Cincinnati Children's, my research changed to look at children with cerebral palsy and cerebral visual impairment (CVI).
Dennis: Gotcha. How long now have you been the director of research for occupational therapy at Cincinnati Children's?
Karen: I have been here for 11 years, and I have been doing the same things since arriving. When I first joined the group, I was the first PhD-trained occupational therapist, so I started the OT research here at Children's.
Dennis: What things are you doing with the other occupational therapists at Cincinnati Children's?
Karen: I sit on a research team of now two OT PhD-trained people. We guide clinicians in research projects that they come up with based on their clinical practice. I also do a lot of independent research on babies who are at high risk for CVI or CP. It is early detection and intervention work for both of these populations. I guide other OTs who want to do research in the line of practice that they do. For example, one on our NICU team just got a grant to look at the transition from the NICU to home. I am a mentor on that grant.
Dennis: Nice. Are there other research directors at children's hospitals around the country?
Karen: There is a handful, but I do not think it is very common. I do not know the exact number, but I know there is less than 10. Sometimes we will meet up and have dinner at different conferences to talk about different research projects.
Dennis: You said you were initially interested in sensory processing but then became interested in CVI. Could you talk about how that came to be?
Karen: It was one of the projects that I was assigned when I got there, so I did not know much about it. We brought in a researcher named Dr. Christine Roman-Lantzy, who does a ton of research in CVI, from another university. She wrote the CVI Range, which is one of the tools that we use. She taught me a lot about CVI, and once I had that initial training, I was intrigued. It spiraled from there. We also have a few ophthalmologists and optometrists at the hospital that are interested in CVI, and we work closely with them on both clinical and research projects. It started as an in-service here at the institution because we found that kids who have CVI are underdiagnosed, and they can often get missed in the process. We wanted to develop a program where we could provide comprehensive interventions and/or evaluations and assessments for children with CVI.
Dennis: This is why I wanted to have you on this podcast to help occupational therapists and occupational therapy assistants learn more about CVI and figure out how it might be helpful for them in their own practice. Could you start by telling us what CVI is?
Karen: CVI is a neurological vision impairment that occurs when a child has damage to the visual processing centers of the brain. The anterior visual pathways are how the eyes are seeing, and there are posterior visual pathways that show us what the eyes are seeing and how that is processed. A picture is formed in the eyes, and then it is converted to electrical signals that are passed to the optic nerves. It then goes to a processing station and then to the back part of the brain. Children with CVI have difficulty processing what it is that they are seeing.
Dennis: How do you differentiate CVI from other types of visual impairments?
Karen: Sometimes it is hard and takes a little bit to sort out. As OTs, we look at the functional limitation of visual impairment. CVI gets diagnosed when there is an insult 90% of the time, including oxygen deprivation, stroke, hydrocephalus, or some trauma. Unfortunately, we see shaken babies. Infantile spasms are another big one that we see. They may be exposed to drugs while they were in the womb. These are all examples of insults to the brain.
Another sign is an eye exam that does not match their vision. For example, some kids with CVI might have 20-20 vision, but they still have difficulty with their ADLs. It is our job to do task analysis to figure out what is vision and what is motor to see where the impairment is or what is getting in the way of the child's functional performance.
Dennis: It is interesting that you note the difference between acuity, what the eye exam is saying, and then what performance is happening. If you have some suspicions, how do you get CVI diagnosed?
Karen: I recommend going to a team who specializes in neurological visual impairment. Awareness of CVI is newer to therapy, so I can talk about how we do it here at Children's. If there is suspicion that a child has CVI, they will be referred to our clinic and see a multidisciplinary team, including an ophthalmologist or an optometrist.
Dennis: What is the difference between an ophthalmologist and an optometrist?
Karen: The difference is their schooling. An ophthalmologist goes through more schooling, but they can both diagnose CVI. The ophthalmologists might do more surgeries and those kinds of things. We have two teams, and these professionals are on each. They usually see an OT and then a teacher of students with visual impairment, or TVI. There may also be an orientation and mobility specialist. We had one here, but then she went into the schools. We are looking to bring another one into our CVI clinic.
We see the kids for two hours. We see them together for the first hour for a visual acuity exam. Usually, the ophthalmologist does contra sensitivity, color testing, and field testing. The occupational therapist does more of the functional vision piece of that exam. The teacher of students with visual impairment will do a reading assessment if they are at the appropriate age. They will also give recommendations for their school activities and IEP plan.
Another way we may get kids into the clinic is via an eye doctor in the eye clinic. If they suspect CVI, they will refer them to OT to complete a functional vision eval. We also complete a parent interview, direct observation, and formalized assessments depending on the child's age and/or abilities.
Dennis: What functional performance are you looking for as part of that evaluation?
Karen: When we do the functional vision evaluation, we look at different things, like visual attention, visual motor tasks, reaching for things, and facial recognition. There is an app that we use to see if a child can recognize familiar faces called 9 Gaze. We also take pictures of the people in the room and see if the child can find them. We will observe to see if they are looking around and playing with toys. We also want to note if they are avoidant of new things. We also do a lot of environmental and task adaptions. For example, we may try an activity with the lights on and off to see if environmental modifications make a difference in the child's visual behaviors.
We talk a lot about visual behaviors. To put that into context, I may have the child reach for a toy again with the lights on and off or with a toy that is lit up or very complex to see if that changes their behaviors. Do they look away when they reach, look at the toy when they reach, or are they not interested or reaching at all? There are a lot of different things that we do with the kids. Clinical observations help us figure out these behaviors.
If we can get their visual attention, we look at how long they will fixate on an object. Depending on their age and abilities, can they visually discriminate? For example, if I hold up two different pictures, can they discern the lion versus the tiger? If I hold up a 3D object, can they discriminate it? There are many things that we can do to help inform the intervention and how to set up the environment during intervention or school-based activities.
Dennis: Are there any standardized assessments you use?
Karen: It all depends on the child's level of severity, age, and abilities. I mentioned the CVI Range already. It is an easy assessment that we can do with kids who have CVI, and it can be used as young as nine months. It is a subjective assessment and not standardized, which is a little bit tricky sometimes. Here at Children's, we developed a way to standardize it amongst our clinicians to make sure that we are all doing it the same way.
For those at a developmental age of three to six years old, there is a test called the CVIT 3-6 assessment. It is a visual, computer-based test. Kids look at different pictures, and you ask them what they are seeing. For example, Dora the Explorer is in one of the pictures. You can then show them Dora with and without background information to add complexity. For children with CVI, it is often harder when there is a complex background versus a less complex background. It also looks at movement discrimination. There are 14 different subtests, and it gives us a good idea of the different visual skills.
We also do the Beery VMI, which has three subsections. We use this to look at their visual perceptual, visual motor, and visual motor coordination skills, all depending on the child's ability. We can tailor the assessment to the child's ability level.
Dennis: This all happens in two hours?
Karen: Sometimes we have to bring them back. The way it works is that we see them together for about 45 minutes to an hour, and then the OT will pull them out and see them by themselves to finish up. We can usually get it done because most kids will only do one or two tests depending on their level. The higher functioning kids or those with mild CVI can go right to higher skill tests. We try to go to the highest tests that a child can do.
Dennis: After this happens, what is next? Does the team get together with the family to discuss the plan?
Karen: Exactly. We meet with the family and bring in the ophthalmologist or optometrist to describe what we saw and whether or not a diagnosis is warranted. The ophthalmologist or the optometrist will either diagnose them with CVI at that point or not. If we suspect a child has it or there is not enough at this point to be able to tell, like in an infant, we may say, "Come back in a year, and we will do some more tests. These are the things you should consider, and these are the adaptations that will help your child regardless of whether they got the diagnosis or not." We will also discuss if treatment is warranted.
Many times, kids come to the clinic from different states. In these cases, we touch base with therapists that are closer to home and guide them. More recently, we have had the OT do a telehealth session with the parents to teach them about CVI. What you can teach them at the end of a visit is not very much, and we wanted to ensure that the parents feel confident. Environmental and task adaptations that we recommend for these kids are important, and they are going to change the way a child interacts with their world. Thus, we want to ensure that the parents understand how to set up the environment to promote motor and language skills. We set up telehealth education sessions with them and create an individualized PowerPoint where we go over all the CVI strategies. We teach them how to understand whether or not they set up the task or the environment at the appropriate level and how to read their child's visual behaviors. We also teach them about the "just-right" challenge and what behaviors might mean. For example, if a child is looking away a lot, we might tell them that that probably means that something is too complex or the child might be tired. We suggest reducing the complexity, giving the child a visual break, and coming back to the activity to see if that changes their visual behavior. We also teach them how to read the child's visual behaviors and understand whether or not they are set up at the right level.
Dennis: How many states are you licensed in?
Karen: I used to be licensed in three or four, but now I am only licensed in two. We have certain therapists that are licensed in Indiana, I am in Kentucky and Ohio, and another in West Virginia. I saw a patient right before this that was from Virginia, so I did a phone call, as I could not do telehealth. They usually come for a week at a time, and the last time, we scheduled two visits, one where I did the evaluation and the second one where we went through the training. They said, "He is two and in that transitional age to preschool. We have been sharing the PowerPoint with his team, and they have found it to be helpful." We not only teach parents, but we also give them materials that they can share with their care team so that they can understand CVI a little bit better.
Dennis: You are one of my former students. I want to say how proud I am of you. This is an example of where the student becomes smarter than the teacher. Your knowledge of the subject is amazing. You have been there now for 11 years. At what point did you feel like you started to get comfortable with evaluating kids with CVI?
Karen: There were three of us that went to the original training, and we had no clue what we were doing. You show these kids things and you have to kind of figure out. Are they looking at it? Do they see it? Do they know what they are looking at? I think it probably took me a good year before I felt comfortable. I am the only one in that group that is still doing CVI. They cannot believe that I am still doing it. It is easy now, but it took some time. It is hard to understand visual behaviors and understand what they mean.
Many kids have co-occurring diagnoses. Say you have a child with quadriplegic CP and a vision impairment, they may have an ocular and posterior visual impairment. You have to sort out different things and develop strategies. We have toolkits, like CVI cards, that we have put together as we learned a little bit more. I think it is fun.
Dennis: Why is vision so important to occupational performance?
Karen: It is extremely important, especially for kids who have CVI. As I mentioned, with the co-occurring diagnosis, CVI gets overlooked a lot of the time. People assume that kids are not reaching for a toy because they cannot reach it. However, if they cannot see what they are reaching for, they are not going to do it. I believe that you have to think of vision first when you are working with children.
We did a focus group with two OTD students, and one of them was from the Ohio State University. We wanted to get parents' perspectives on what it was like to raise a child who has CVI. Quite a few of them mentioned that until their therapist realized that vision was the key factor in holding the child back, they were not getting anywhere. One of my favorite quotes was something like, "It wasn't until we put a mat on the floor to cover up the oriental rug that we realized he could not see what the physical therapist wanted him to crawl toward." They made some environmental adaptations and realized the importance of vision when their motor skills start to develop.
A mom of another little girl I saw the other day says the same thing. Often, the parents are so worried about their survival initially. "Once they got her medical issues under control, and they could start to work on visual skills, her motor skills started to develop after that." Remember, if they cannot see something, they are not going to reach or move toward it. Once you figure out that vision is a primary factor in the impairment, then I think the children are that much better off. The modifications that we make are not rocket science; they are easy things that we adapt to help the child attend to whatever it is that we want them to see.
Dennis: Are there any telltale signs when you are working with a kid that may have CVI?
Karen: Yeah, there are, and I can answer the question about behaviors. They have difficulty with their lower visual field. For example, they may walk into a big basket on the floor. Or, when they are going down the steps, they might use their feet to feel where the step begins and where it ends. Steps are often the same color, and this is a common behavior of a child with CVI. Kids will also often look up at lights. It is easier to look up at the lights than to process the busy complex world around them.
There are a lot of screening tools that we can use as OTs or any professionals to address the early signs of CVI. The screening tools are based on the behaviors of kids who have CVI. The one that we use for kids who are zero to two is called the PreViAs (Preverbal Visual Assessment). It has 30 questions and asks about different things. "Does your child look at their hands?" And "Do they do different things in the environment?" The parents answer yes or no. It has been validated and found reliable to be a screener for visual maturation. If you are an OT and working with a child who had a stroke or brain injury, then it would be worth doing this questionnaire. It is freely available and easy to do. It also helps us understand some of the behaviors.
There are other tools that are based on the child's age. There is one specifically for kids with CP. One we use often is called the Teach CVI and is divided into three tools. Teach 1 would be for kids who are nonambulatory. Teach 2 is for kids who are a little bit younger, and Teach 3 is for kids 6 to 12. They all ask about different behaviors that are common in kids who have CVI.
A grandfather of CVI is Gordon Dutton. He has two different questionnaires that are easy to use, and the ophthalmologists in our clinic use them. One is the five questions, and they are from never to always for things like: "Do they have difficulty walking downstairs?", "Do they have difficulty finding animals that move quickly?" or, Can they find clothes in a pile of clothes?" We recently started to use the version with 11 questions to look at kids who have less severe CVI. Some of the questions are the same, but not all of them. Examples are, "Is your child distracted when they are doing something for a long period of time?" and "Can they find their friends when they're standing in a group?" This is looking at visual discrimination things. "Do they trip at the edge of the pavement if they are going down?" These questionnaires are quick and dirty. The behaviors that are common in kids with CVI can tell us whether or not a full comprehensive vision evaluation is warranted. There are different ways to score them, and if they are positive, then that tells us that they should get a full vision evaluation.
Dennis: You mentioned the Beery. Is there anything within the Beery that gives some clues?
Karen: This is a little bit trickier because we can only do the Beery on kids that have mild CVI. It diagnoses a higher level of visual perceptual deficit, which could be CVI or could not be. So, they have to have some of those other things that I mentioned. The Beery can be used in other populations, so kids who do not have CVI can have a visual perceptual deficit. I would do the Beery plus a parent questionnaire or the Beery plus parent interview to understand some of the CVI behaviors that we would expect.
Dennis: What is the advantage of being part of a clinic team?
Karen: We have a group discussion. Obviously, the OT does not diagnose, but I feel like the input that the OT has helped the ophthalmologist and the optometrist come up with conclusions.
Dennis: This is especially in your 11th year 11 as opposed to year 1.
Dennis: I bet your input probably has a lot more weight to it than back in the day.
Dennis: You talked about some co-occurring diagnoses that happen with CVI. You mentioned cerebral palsy and stroke. Are there other ones that might be common, at least for the occupational therapy practitioner?
Karen: The biggest co-occurring would be CP, but we also see kids with autism, developmental coordination disorder, dyspraxia, and ADHD. There are quite a few overlapping conditions, and it is probably one of the most fun things for me to sort out. You cannot do that in a two-hour evaluation.
We try the CVI strategies in treatment, and we try to be detectives to determine if we should adapt the environment or the task to help their visual behaviors. It is also hard to discriminate between sensory and vision because it overlaps so much. Regardless of the rationale behind the behaviors, if the CVI strategies help, then it will promote better attention and learning.
Dennis: Would you say that these changes come on suddenly, have always been there, are more gradual over time, or does it depend on the co-occurring diagnoses?
Karen: I think that they are probably there all the time, but I think that kids are resilient. If they have a mild CVI, they can overcome a lot of it. It is not until they are school-age that you start to see that they are having difficulty with things like reading or writing. When they get referred to the clinic, we may hear that they had a small stroke when they were younger. So, I think the symptoms have always been there. When the CVI is more severe, it is pretty obvious and easier to see. Again, kids can adapt and figure it out, but it is not until those higher-level skills come out that we see it.
One of the biggest principles that I tell parents is that if the kids are doing something that they are familiar with, then we can challenge their vision. If they are doing something that is novel or a hard task, then we need to adapt it for their vision. With the kids who have mild CVI, this is where we see it come out. If they do things that are easy, their vision is not affected. It is not until they get to school, where there is lots of information on a page or busy worksheets, that they need adaptations.
Dennis: In terms of treatment and some of the toolkits that you talked about, what are some of your strategies?
Karen: The adaptation strategies that we use are based on the child's visual skills, so it is a little bit tricky of a question. Most of the time, kids with CVI will need an adaptation for complexity. When we talk about complexity, we talk about the environment and the tasks. If I am working with a baby and I want them to reach for a toy, I may use something that is a single color or lit up. When you think about baby toys, they typically have multiple colors, make noise, light up, and have lots of sensory things happening. Kids with CVI may respond better to only one color or sensory characteristic. When it is hard for them to see, many kids will use their hearing. So when I am testing CVI, I try to use toys that do not make noise to make sure they are only using their vision. Reducing visual or auditory stimulation is considered an adaptation. We are looking at how complex an object is and seeing if it needs to be less complex. Again, kids who have severe CVI may stare at the overhead lights. The lights are easy to see, so we should turn them off and use a light-up toy.
When you are thinking about the home environment, what other sensory things are happening? Are the parents cooking? This is a sense that the child might not be able to ignore. With kids with severe CVI, we want them to be able to understand how to turn on their vision. We often use a black trifold board to take away the background information. This makes the toy pop out, so it is easier to see. You could also buy a tent on Amazon or make it out of PVC pipe. Using this to remove distractions within the room can make it easier for kids to use their vision. You can also hang things down from the ceiling.
Let's go back to the example of the child on the rug. We need to teach parents to think about the environment. We can use a black sheet to cover busy patterns. Lightboards can also be great for school tasks. The light attracts the child's attention.
Dennis: You start somewhere and then grade the activity.
Dennis: Do you want to talk a little bit about that process?
Karen: We teach the parents how to read their child's visual behavior, like how quickly the child looks at the toy and how long they do it. As their vision gets better, they will look at things quicker and longer. Once they understand that they can use their vision, we can change the toy so that it is a little bit harder. We might move from a single-color toy to a multicolor one, or we might put the lights on a little bit more so they have to learn to deal with complexity. You do not want to adapt everything, as you want them to learn to deal with those harder things. When a child is not using their vision very much at all, then we want to make adaptations.
We can also think about it as different phases of development. For kids who are in the middle stage of visual development, we want them to use their vision to make something happen, like reaching for a toy, activating a toy switch, or playing with a cause-and-effect toy. Kids who have milder conditions are using their vision in new environments or finding things at a distance. For example, this could be a kid trying to find a tiger in the zoo. Or, I might have a child go grocery shopping with their parents and try to find their favorite cereal amongst a bunch of brands. This is a complex environment. Ultimately, we want them to learn to deal with complexity over time.
Dennis: Part of what you are doing is direct treatment. What does a typical treatment session look like? Is it more of a coaching model, or is it direct intervention moving into consultation after that?
Karen: It depends. We start all of our episodes with the COPM, or the Canadian Occupational Performance Measure. We ask the parents about their goals to guide our treatment session. I would say that every child requires some environmental or task adaptation, parent coaching, and parent training.
We did a study here before COVID and before telehealth was cool. As an outpatient therapist, I felt strongly that if I could not get into the child's home, I needed to know what their home looks like. It is hard for me to give recommendations to a parent like "Reduce complexity." However, if I am in their home, I can say, "You should put up a black border right here to help him with eating dinner," or whatever. We did a telehealth study that had positive results. We had access to their home environment and were able to give direct instruction as to how to change the environment.
In addition to that, we were able to provide coaching. I wanted to be able to teach the parents how to problem-solve for themselves around environmental modifications. In the beginning, it was more education. Then it transitioned to more coaching to help them be able to understand how to problem-solve their adaptations to tasks and the environment for themselves.
Dennis: You talked about the PowerPoint that you share with teachers.
Karen: If we cannot get there in person, we can communicate with them when there are questions. I have access to a TVI in our clinic. Sometimes, I have our TVI call their teacher if there is an education question. I know everybody does not have access to that, but for me, that is pretty helpful. Parents may also ask me, "What size font should I use?" I have them bring that in for a session with the TVI. She can do a reading assessment and guide them from an academic point of view. I will often partner with my TVI to answer some of those academic questions, but then as an OT, I can give them recommendations about the environment, like a slant board or something like that.
Dennis: Does CVI kind of affect mealtime as well?
Karen: One behavior for a kid with CVI is they have difficulty with their lower visual field. When you think about a plate and feeding themselves, you could see how this could be difficult due to needing their lower visual field, and mealtime is almost always affected. Some of the questions that we ask about mealtime when trying to get a better picture are, "If they're not feeding themselves, do they see the spoon coming to them when you are feeding them?" and "Do you have to touch it to their lips for them to see it?" If they are self-feeding, "Do they find everything on their plate?" I always ask the parents if they are making any adaptations right now. They may use a solid color plate versus a Dora the Explorer plate. All of those things are going to play a part in the child's independence with feeding.
Dennis: Finger feeding is probably easier.
Karen: Yes. I always ask parents to take videos to show me their setup and feeding session. I then use that in our session to guide the parent, or we will do feeding there. Again, it is different in an adapted environment, as our environments are very sterile. There are siblings running around or dogs barking. Vision looks different in home environments versus in our clinic situations. The most information I can get from parents about what it looks like for them at home, the better.
Dennis: It seems like CVI might be underdiagnosed. What are you doing to help with that? Are you doing education for therapists in the area for families? What is the Cincinnati Children's doing to help with that?
Karen: We do a lot of education to other OTs, but also to ophthalmologists and optometrists. We even present in our own institution, like the ophthalmology department, to talk about things they should be looking for in kids. We also recently got our screening tools into the Epic system. Now we can send the screening tools to parents so they can fill it out over MyChart, and then everybody on the team has access. We try to screen kids who we think might be at risk for CVI to see if they warrant a full comprehensive CVI clinic visit. This small step of getting that worked into Epic so it is available for all physicians and therapists within the network is helpful. And, if they are scheduled for a CVI appointment, they will get that automatically.
We have an algorithm set up so that if they are here for a certain visit type for CVI, they will get the questionnaire. It has smart technology so that it answers a couple of questions about their age, mobility status, and a few other different behaviors, and then it will assign them the correct screening questionnaire based on age and developmental abilities.
We often do education sessions in the community. For example, we did a six-day presentation to a county that provides school-based services. I am also traveling with Dr. Schwartz, who is one of the ophthalmologists that I work with all the time, to Lexington on Thursday to teach them up there about CVI, as we have done before.
There are different networks that we partner with to provide updated education on CVI. A lack of awareness of CVI by medical professionals and school personnel is one of the biggest barriers to treating this disorder. The more we can attend conferences, present, and talk about CVI, the better. I did a survey last year with TVIs and OTs about their educational experience on CVI in their educational program, and they reported it was very poor. TVIs get more training than OTs do, but less than 30% of OTs got any education on CVI in their school. This is sad.
Dennis: There are many programs in Cincinnati so you can help with that.
Karen: I do. I also have been to Ohio State a couple of times to talk about CVI. I also have groups of students who I do projects with. Here in Cincinnati, we are doing an okay job, but we need to reach more people. This lack of knowledge is leading to the problem of underdiagnosis or late diagnosis of CVI. When kids get diagnosed at seven, eight, and nine years old, they have missed a lot of opportunities for easy intervention.
Dennis: In the kids that you are seeing, are there some issues around justice, race, and socioeconomic status? Are children from impoverished backgrounds less likely to be diagnosed or able to receive treatment?
Karen: I think where you live does play a role. If you have a CVI program close to where you live, there is going to be more awareness of the issues. In our CVI clinic, we have people who drive three, four, and five hours to come for an evaluation because they cannot find anybody in their area.
Dennis: What are the goals that an OT might write?
Karen: Using the COPM, they are going to be functional goals. For example, if the parent's goal is feeding, then we may use the terminology of task adaptations to promote self-feeding, visual adaptations, and vision in our goals.
We are almost at the end of writing a paper. We looked at the COPM of kids who have CVI in both OT and PT treatment and linked it to the ICF to see where are the kids' goals are falling. Are the goals in activities and participation, or are they body structures and functions? Where do their goals fit? Thankfully, the majority of both OT and PT goals fell within activities and participation, so some type of functional thing. In OT, I want to say the biggest percentage were using their motor skills for self-feeding. In a couple of weeks, hopefully, we will have huge tables of data about what kind of goals parents set.
Dennis: In terms of the goals, we believe in neuroplasticity. Is the goal remediation or accommodation? At what point do you start to make those decisions as a therapist?
Karen: With most kids with CVI, there is usually a combination of both. For me to remediate a motor skill, I have to adapt the environment to make it easier for them to see. I call it the "double whammy." We do not want them to work hard on both motor and vision at the same time. If we adapt for their vision, they can work on their motor skills easier. For example, if I want a child to reach or swat at something, if I adapt the environment, they are going to have more success. They are not working hard to see the object or move their hands. Then, you move towards not needing as much adaptation. It depends on where they are on their CVI severity to understand how much adaptation is needed. Adaptations fade as their CVI or processing gets better.
A good example of this is when I first started to work with kids with CVI. Our recommendations were all adaptations. For stairs, we might put tape on the edge of the step, or when getting out of the bathtub, use a darker mat so they can see where to put their body. We soon realized that we did not want to adapt all the time for these kids who are going to be mobile. Instead, we wanted to fade some of these prompts. Curbs are a good example. We ask parents to give them a verbal warning, "There's a curb coming up, and you are going to have to step down." Eventually, I want that child to be able to see the curb coming up and know they have to step down. We transitioned from visual adaptations to having the child find them within the community. We made a game of it. "When you see the curb, yell a funny word" or something like that.
We also used obstacle courses to pull their attention down to the visual field as a type of remediation. Or when playing a game or a puzzle, we put the pieces on the floor and have them find them first. It depends on where they are in their phase of CVI or their ability to use their vision.
Dennis: If we are going to summarize your treatment, we say, "Avoid the double whammy."
Karen: Avoid the double whammy.
Dennis: You ought to get that trademarked and get stickers for the kids and parents.
Karen: There you go.
Dennis: What are some sources or recommendations that you would have for occupational therapy practitioners who are interested in CVI?
Karen: There are a lot of great websites. One of my favorite websites is called CVI Scotland. I think it is CVI Scotland.org. There are many great short videos about common CVI topics. It is one of my favorite websites.
There are also parent support groups. There is also the Pediatric Cortical Visual Impairment Society that has some resources on its website. They have a meeting every other year, and there are many parents, therapists, and MDs that attend. It is usually in Nebraska. There is also the American Foundation of the Blind.
There are different textbooks and toys for kids with CVI. A book that a lot of parents read is called "Little Bear Sees." It's a really easy read. Another book is "Vision and the Brain," and one that I reference a lot. I believe one of the authors is Gordon Dutton, the person that I mentioned with the questionnaire. There are great resources out there.
Dennis: Karen Harpster, my former student, look at you making us all proud and doing such a great job with CVI and many other things at Cincinnati Children's Hospital in beautiful, sunny Cincinnati, Ohio. Thanks very much for being with us.
Karen: No problem. Thanks for having me, Dennis.
Available in the handout.
Harpster, K., & Cleary, D. (2023). Evaluation and treatment of cerebral visual impairment podcast. OccupationalTherapy.com, Article 5596. Available at www.occupationaltherapy.com