You may remember last July, when we discussed a certain resolution that targeted students with cortical visual impairment (CVI), and the CVI Range (Roman-Lantzy). The Resolution was presented at the International AERBVI Conference in Reno, Nevada. Resolution (AER-2018-00) was presented on site without prior notice, without warning, and hastily “passed” (absent members were denied the opportunity to vote). These are extreme tactics that are all too concerning in these political times.
The AER resolution was reported on here, and parents and providers of children with CVI from across the country responded to AER and those responsible for drafting this document. Recently, after a great deal of push back, the resolution mysteriously, quietly disappeared from the homepage of AER’s website so that it could be given “further consideration” (why was it even posted there, so prominently, in the first place?). No explanation, no accountability, no integrity, on the part of AERBVI, just gone.
Christine Roman-Lantzy, who created the CVI Range – whose life’s work has had the most profound impact in the lives of children who have CVI – has also responded to AER:
In July 2018, AER passed Resolution 2018-001. This Resolution included content that potentially limited the use of The CVI Range as an assessment of functional vision in students who have CVI. The following is my response to the Resolution. My statement provides an explanation of my point of view regarding AER’s Resolution 2018-001. The Resolution was removed from AER’s website in September, 2018.
You can read her full comments here. Instead of taking the opportunity to finally advocate for children with CVI – children who the field of visual impairment has been blind to, and reluctant to acknowledge the reality of the changed demographic of people who are blind and visually impaired – AER chose to attack the one approach that we have for our children. Let me say that again – the one approach that we have for children with CVI, the leading cause of visual impairment in children since the 1990s. We have one approach, the CVI Range. That does not mean that you cannot use some other kind of assessment in addition to the CVI Range, for a student with CVI. It means that, over the last twenty years, the CVI Range is the only assessment that was specifically created to assess children with CVI, and the impact of the ten characteristics on a child’s use of functional vision. As parents, providers, educators, it is all we have. As parents, it is all we can ask for, at every IFSP or IEP team meeting. The CVI Range, CVI interventions and modifications, and providers who are competent in cortical visual impairment. It is the absolute least we can do for children with CVI.
Cortical visual impairment has been the leading cause of visual impairment in our children since the 1990s. By now, we should be nothing less than fierce advocates for our kids with CVI. Any resolution, or initiative, or state “guidance document” around cortical visual impairment needs to be about CVI advocacy. The AER resolution represented the field of visual impairment – that includes both American Foundation for the Blind and American Printing House for the Blind – institutions that exist to support all students who are blind and visually impaired. That includes children with cortical visual impairment, who comprise forty percent of the demographic.
After twenty years, if the field of visual impairment is finally ready to acknowledge and advocate for children with CVI, then that advocacy needs to revolve around the following topics.
Cortical visual impairment is a disability of visual access (Roman-Lantzy). Children with CVI have a right to access – to see, interpret, and fully experience their world. Children with CVI have a right to educational and social inclusion.
Early diagnosis. Increase awareness and education of cortical visual impairment across the medical field, so that children with CVI receive an early diagnosis. Because time lost is brain lost. Medical field means neonatologists, neurologists, ophthalmologists, pediatricians, NICU nurses and others.
Vision services. Every child diagnosed with cortical visual impairment, qualifies for vision services by a CVI competent teacher of the visually impaired (TVI) on the basis of the CVI diagnosis alone, regardless of visual acuity.
An accurate CVI Range assessment for every child who is diagnosed with cortical visual impairment.
Providers who are competent in cortical visual impairment. Until every university program in this country is on board and begins teaching cortical visual impairment and the CVI Range, in dedicated, required courses, in their graduate level, vision teacher preparation programs – every child with CVI has the right to a CVI Endorsed team member, beginning with early intervention, all the way through the education system.
If the field of blindness and visual impairment really is ready to start seeing our children with CVI, this is where the conversation needs to begin. Again, read Christine Roman-Lantzy’s response here, on her As I See It blog.