Call to action: assault on children with CVI

CVI Parents, does your child benefit from the use of the CVI Range assessment? Does your child’s team rely on the CVI Range in an early intervention or educational setting? Does the CVI Range help the adults in your child’s life understand his/her vision better? Does your child require the CVI Range in order to have visual access to the curriculum? Does your child with CVI require the CVI Range in order to receive a Free and Appropriate Public Education (FAPE)? Mine does.

This weekend at their annual conference, the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI), also known as AER, presented a draft resolution (link below, the final version was slightly edited), in response to a CVI advocacy teleconference held last March, which drew scores of parents of children with CVIParents should read the full document, just over five pages. The title, Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families is misleading as the resolution seeks to limit access to the CVI Range (Roman-Lantzy) and CVI Endorsed professionals.

To date, the CVI Range is still the only assessment that specifically addresses the disability of cortical visual impairment (CVI). The CVI Range assesses the impact of the ten characteristics of CVI (Roman-Lantzy) and provides a framework for interventions, giving children an opportunity to use and improve their functional vision. In essence – the CVI Range gives our children with CVI visual access to their education, their community, their world. The resolution does advocate for stricter teaching requirements for teachers of the visually impaired, but falls short of advocating for CVI specific courses within the framework of TVI training programs.

Parents – right now – how difficult is it to get needs met for your child with CVI? From getting a  CVI diagnosis to an accurate CVI Range assessment, from finding CVI competent providers to getting the appropriate accommodations? This resolution also seeks to limit a parent’s right to advocate for a CVI Range assessment, which in turn, limits the accommodations and interventions that go with it. It also restricts a parent’s right to advocate for teachers who are CVI Endorsed.

Let’s view this resolution from the perspective of a person or child with CVI. AER seeks to deny our children with CVI the right to the only assessment that is especially for them. Read that again. This targeted assessment was created to specifically address the disability of cortical visual impairment. I cannot stand by and let anyone limit our access to this invaluable tool and the professionals trained to use it.  Our kids with CVI – my child – has a right to the only assessment for his disability. Would AER ever dare deny a child with an ocular condition their functional vision assessment (FVA)? Would they deny a child who is blind access to Braille? If anyone dared deprive a child with an ocular condition of their supports, the visually impaired community would revolt. Why do they seek to deprive children with CVI of their functional vision assessment, the CVI Range? Once again, why is it different for our children with CVI?

These professionals who seek to deny our children the CVI Range, are not working in the best interests of children with cortical visual impairment (CVI).

Who is behind this resolution?

The organizations backing this resolution – American Foundation for the Blind (AFB)American Printing House for the Blind (APH) and AER – exist to serve children who are visually impaired – and that includes children with CVI. We well know that assessments and interventions for students with an ocular condition are inappropriate for students with CVI. Our kids with CVI have a right to an appropriate assessment that address their disability. AER is attempting to not only deny our children that right, but to deny our rights as parents, as lifelong advocates for our children, to advocate for appropriate training, assessments and qualified, CVI competent providers. How hard do CVI parents already work to secure an appropriate education, FAPE, for their child? How many of us are successful in our efforts? This resolution, and the actions of these organizations (AER, AFB, APH), is discriminatory. Children with CVI require the CVI Range in order to receive FAPE. FAPE is the primary mandate of the IDEA, which all of these authors seem to have overlooked.

Most professionals working with children who are visually impaired have the best intentions when it comes to students with CVI and they did not draft this document. Most do not seek to deny a student the appropriate assessment that he requires, deserves, and has a right to. The groups mentioned above are working in their professional self interests and do not have the best interests of children and students with CVI in mind. The professional rivalry that festers within the CVI field needs to be addressed and resolved ELSEWHERE – someplace other than in the lives of children with cortical visual impairment. It does not belong in the midst of the conversation around how to better serve and support our children with CVI. Those driven to serve students with CVI, to help them use and improve their vision and provide visual access to their education and community, do not craft discriminatory “resolutions.”

Let’s put this into context:

For background, a few years ago, AER was given the opportunity to be a partner in the CVI Range Endorsement and turned it down. This, in spite of the efforts of  dozens of CVI families and TVI’s from around the country submitting letters voicing urgent support of the CVI Range Endorsement. Perkins School for the Blind was the only institution willing to take on the crisis of CVI education. Perkins has since become the leader in CVI education and this weekend, at the AER conference, submitted edits to the AER resolution.

For parents and families of children with CVI this resolution is alarming and is an assault on our children with CVI, the CVI Range, and our children’s civil rights.

CVI advocates are planning an organized response. In the meantime, parents, please read the resolution, and respond to the authors (contact information below).

Talking points:

Detractors like to focus on evidence based practices. Where is the scientific research that Braille works? Or the functional vision assessment (FVA)? Show me the evidence.

Why is the visual impairment community not advocating for mandatory, dedicated courses in cortical visual impairment (CVI)? Vision teacher preparation programs offer at least two dedicated Braille courses, they do not bury Braille in other topics. CVI should be the same.

Why are these groups pursuing this assault on the only assessment that specifically addresses the disability of cortical visual impairment (CVI)?

In fact there is research on the reliability and validity of the CVI Range, conducted by  Dr Sandra Newcomb, and you can access that here.

For parents and families of children with CVI, the evidence that the CVI Range is reliable and valid is right in front of us – in our kids with CVI. For parents and families, the CVI Range and the work of Christine Roman-Lantzy is invaluable for learning about our kids. The CVI Range provides visual access and is what our kids require for them to receive the appropriate education (FAPE) that children with CVI have a right to.

Read AER’s resolution here – Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families.

Contact information for individuals who drafted the resolution:

Yvette Blitzer, Dominican College, yvette.blitzer@dc.edu

Kathryn Botsford, formerly of Portland State University, kdbotsford@gmail.com

Dr. Sandra Lewis, Florida State University, slewis@fsu.edu

Mark Richert, American Foundation for the Blind, 4justice@concentric.net

Yue-Ting Siu, San Francisco State University, ysiu@sfsu.edu

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