I’m reflecting on 2018. For me, this has been the Year of the CVI Advocate. My life has been transformed by my interactions with fellow CVI parent advocates – online, at conferences and through this podcast.

From Start Seeing CVI Advocacy on Facebook to Boston for the CVI Symposium to Omaha for the American Conference on Pediatric Visual Impairment back to Boston for CVI Family Vacation – and even from my closet here in Raleigh – I’ve interacted with some pretty amazing humans who have made this journey start to feel meaningful.

I also had a unique opportunity to take a leave of absence from work this summer to concentrate on my daughter Grace, which may be something I’ll share more about later…

To sum it up, it’s been a stellar – and at times upsetting – year.

We parent advocates have found some strength and cohesion. This is good.

So, what next?

Well, let me share what I’ve learned this year.

Bottom line: this is a sprawling issue.

We all know there is a lack of general awareness and that CVI is complex – our kids have a wide spectrum of issues (related to and not related their visual abilities).

This makes parent advocacy more important than ever. And I’ve heard from vision professionals that they are pleased to see us strengthen our ranks, but….

We are too much.

Too angry.

Too combative.

Too passionate.

They say our advocacy is misguided and there’s potential that we’ll drive away experienced professionals.

Sigh.

Yet, if you ask, most people think we should be treated as equal partners on our child’s team. Sounds contradictory to me, but I think I can rationalize it. Professionals often feel at a loss when it comes to helping our children. They want to help, but no one was taught how to identify CVI and intervene. I would feel defensive – and do sometimes as a parent – if I was supposed to have the answers and didn’t.

Doctors and educators need continuing education and mentorship from those in the know. CVI courses are not a dedicated part of their preparation programs, one of the primary problems in my humble opinion.

Our medical system is letting down families. Medical experts recognize this. It can be hard to get a diagnosis. And if you do, it can take up to a year to get a follow-up appointment with a specialist. On top that, there is not a standardized set of tools for diagnosis and evaluation. The ICD-10 codes are misrepresentative – you know this if your child was diagnosed with the outdated term “cortical blindness.” Just another hurdle to getting a proper diagnosis.

Truly problematic: We aren’t screening infants who are likely to have CVI. You know, preemies, kids with a history of a neurological event, etc. Scary but true, kids are being misdiagnosed with Autism Spectrum Disorder. We are missing kids.

Then we look at the world of education. University programs are failing to adequately prepare vision educators to meet the specialized needs of students with CVI. Only one program, U Mass Boston, requires students to take a course on CVI. But how much of these programs is dedicated to preparing educators to teach braille? What vision educators are learning does not match the population of children they do or will serve. On top of that, we have a TVI shortage and, in some states, loosy goosy standards for what makes a TVI in the first place.

What’s largely in the way of solving these problems? Well, we are quite preoccupied with questioning assessment tools like the CVI Range, leaving us little time to make progress on other topics. While some are questioning it, many parents know the value of the CVI Range – how it helps us characterize our children’s needs and intervene appropriately. By the way, there is a replication study on the reliability and validity of the CVI Range in the works.

If we use the CVI Range with our kids, does that mean that other assessments shouldn’t be done? Of course not.

Do TVIs across our nation understand that the Functional Vision Assessment tools they use on kids with ocular visual impairments are not appropriate for kids with CVI? From my experience, not usually.

While Perkins is so extra – wow, I can’t say enough about the continuing education and programming they offer for professionals and families alike – the Perkins-Roman CVI Range Endorsement isn’t the pinnacle of professional success. People are misunderstanding the purpose of the endorsement across the board.

The CVI Range Endorsement is a way to demonstrate proficiency with the assessment tool. It’s not a class or a degree. It’s not making Perkins rich. And it doesn’t demonstrate that the individual knows how to implement CVI strategies. For example, a person can accurately use the Range, but not know how to address the needs of kids in Phase III, which are more subtle and nuanced. Or understand that CVI can mask cognition, especially in more complex or nonverbal children. When will we begin to presume competence in these kids? When will we start educating them with an expectation for growth and learning?

I regret that some professionals believe that parents will only let their children work with an endorsed provider. This is not true, nor is it feasible. There aren’t enough people with endorsements to go around.

Should someone with an endorsement conduct the CVI Range? Yes. You have to know how to use the instrument for it to be effective. I would not let my child undergo testing or a procedure with someone who had not been trained to conduct it.

This is where mentorship could be the key. Raise your hand if you could benefit from the advice of a practiced professional – whatever your profession may be.

We don’t have a universally accepted nomenclature or a definition for what it means to have CVI. I will continue to call my daughter’s condition cortical visual impairment. To the professionals out there who will have input into the name and definition of this condition: make this a priority and stop confusing everyone. Cortical visual impairment, cerebral visual impairment, neurological visual impairment, brain-based visual impairment. We need appropriate terms and clear guidance on what is what.

Terminology and definitions matter. We don’t want to exclude kids from being eligible for services. We also don’t want to blanket all kids with one approach. It’s not that long ago that my child’s team was approaching her education as if she had an ocular condition, even though they knew that she has CVI. Forthcoming ICD-11 and CPT codes need to accurately reflect diagnosis.

We’ve gone too long without addressing this. Stop the madness.

Where’s the research? We don’t have enough to adequate research to inform practice. We certainly need a broader understanding of the brain, additional evidence-based interventions and a way to measure their outcomes.

I’ve also learned that a lot of the problems we face are circular, self-perpetuating. For example, if we had more adequate research to inform practice, then university programs might begin to adequately prepare vision educators to meet our kids’ needs.

And to get research funding, we’ll need a clearer CVI agenda (and name, for that matter).

How will we overcome this? A multidisciplinary approach, for one – this will elevate everyone’s expertise. Many point to a lack of collaboration across disciplines to best meet the needs of our kids. This, of course, is why I support the mission of the PCVI Society, which brings together all disciplines – even parents – to move the CVI agenda forward.

What do you think is the most pressing need for kids with CVI? What keeps you up at night? Email me at [email protected] and I’ll share out your thoughts in the show notes and hopefully cover them on future episodes.

Show notes can be found at cvipodcast.vision.

I’m feeling optimistic as we say goodbye to 2018. Yes, we have some intractable issues that need solutions. But I’m seeing progress. That progress is never fast enough for Grace or Henry or Griffen or Krish or Olivia. And Dagbjört has totally left us in the dust! But I feel fortunate to be witnessing this from the front lines, along with all of you.

We are on the brink of change, so keep on keepin’ on.

Thanks to everyone for listening to Kaleidoscope and for the guest who have let us into their lives. If you missed an episode, I hope you’ll go back and take a listen. I know I’ve been deeply enriched by this exercise in podcasting, hope you do too.

More to come in 2019…stay tuned by subscribing wherever you get your podcasts.