parent advocacy

Central Focus for CVI: “How Does This Benefit Kids and Families?”

I have the pleasure of working at Perkins School for the Blind as the CVI Program Manager. My supervisor, Ed Bosso, has one central question for me every time we meet:

“How does this benefit kids and families?”

I try to take that question into consideration for everything I do.

  • How does this statement benefit kids and families?
  • How does this interaction benefit kids and families?
  • How does this idea benefit kids and families?
  • How does this CVI training benefit kids and families?
  • How does this assessment benefit kids and families?
  • How does this collaboration benefit kids and families?

There is certainly increasing understanding of CVI since I first learned about it in 2002. Now our task is to stay focused and to use that building energy and building understanding creatively, scientifically and collaboratively to move this field forward in all ways.

To support the medical field, the educational field and research field in understanding CVI, that central question, “How does this benefit kids and families?”, should be the first question we ask ourselves. Absolutely nothing else matters…

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Perkins-Roman CVI Range© Endorsement: Exploring a Myth

The issue of competency for TVI’s serving students with CVI is such an important issue in the field of service to students with visual impairments caused by CVI. There is little coordinated education provided in teacher training programs for TVIs, O&M Specialist and Vision Rehabilitation Specialist. There is no way for parents and school systems to understand whether vision professionals have the extensive education about the visual brain, how the visual system operates, how to assess the unique visual behaviors of students with CVI and how to support the educational teams to create accessible instruction that lead to visual improvements.

One step taken by Perkins School for the Blind and Dr. Christine Roman-Lantzy is to create the Perkins-Roman CVI Range© Endorsement. It requires vision professionals to show basic understanding of CVI: history of the building understanding of CVI, definition of CVI, medical causes, and the visual behavioral characteristics.It also asks applicants to prove competence in using the CVI Range, a widely used tool for assessment.

Christine Roman-Lantzy is the creator of the CVI Range and has determined that it is being used widely but incorrectly leading to incorrect scoring. These incorrect scores lead to lack of identification of students, dismissal of students from service, incorrect goals and objectives and ineffective environmental and learning strategies to support visual access and visual improvements.

A frequently heard myth:

“There is a great deal of money being made by Dr. Roman and Perkins School for the Blind”

I contacted Mary Zatta of Perkins elearning to ask her about this issue. She explained that this is not an automated process and that the administrative fee of $125.00 barely covered the expense of awarding the CVI Endorsement. She outlined the intense staffing and man-hours required by 3 full time staff members to review applications, to review recommendation letters, to contact the source of the recommendations, to monitor progress of the written test, to prepare and provide 2 video case studies per applicant, review those submitted CVI Range scores for accuracy, to ensure the applicant is within the margin or error, to provide feedback, to monitor and answer questions, and to provide unlimited live office hours for questions.

Dr. Roman Lantzy receives no money from the Endorsements.

Given that, $125.00 seems appropriate and reasonable!

A Mother’s Journey to Understand Her Son’s Vision

This is a wonderful video presentation from the mother of Arran, an eight year old with CVI. For years, she struggled to understand how her son “sees” the world. She was keenly aware of his behaviors yet professionals provided no answers. Arran lacked visual attention, reached without looking, hated busy places, hated loud places, hated anything new, and struggled with visual complexity. This confusing kaleidoscope of visual information caused her son to react by screaming, biting and scratching to communicate his distress. Over time, Helen understood that her son had CVI. Understanding the impact of the CVI visual characteristics helped Helen advocate for supports so learning could be perceived, be meaningful and occur in an environment with reduced visual confusion.

https://cviscotland.org/mem_portal.php?article=80

Rebecca Davis: Parent Perspective on CVI

This webinar speaks to parents and service providers with great insight to the parent perspective on CVI. Rebecca Davis is a parent of an 11 year old child with CVI. She tells the story of the journey with her daughter with honesty, full feeling and deserved frustration in her attempt to navigate the system to get services to help her daughter. She touches on the federal law as it relates to students with CVI with IDEA. She discusses the need for effective identification, assessment and service to students with CVI. She discusses access for students and how parents can advocate for that access.  She discusses a CVI Action plan to monitor that access by insuring competent practitioners are members of the educational and medical teams. Most of all, she pushes for creation and expansion of the CVI Community of parents to lend a louder and louder voice that demands action.

http://www.perkinselearning.org/videos/webinar/cvi-parents-perspective

Improving Vision: Partners in the Journey

I just signed up for this free webinar from Perkins eLearning

October 18th, 2017 11:00-12:00

This is a webinar presented by a TVI who is CVI Endorsed (Perkins-Roman CVI Range Endorsement) and a parent of a child with CVI. It will document the collaborative work of improving vision for a child with CVI.

Can’t wait to see it!

If you can’t participate at that time on that day, the webinar will be available after the session to view.

http://www.perkinselearning.org/videos/webinar/partners-journey-cvi-experience-birth-age-3

Rebecca Davis: Parent blog

Please check out the latest parent blog: CVI Momifesto at

https://cvimomifesto.com/?wref=bif

The subtext of the blog is “Building a Community of Parents of Children with CVI”

Historically, it is the work of parents, organizing and advocating that causes changes in the service to children. I think of the work of parents of children with autism as they organized and advocated for better research, better identification, better funding and more paid services for their children. The parents of children affected with RETT syndrome and related disorders are another wonderful model group for parent advocacy. They came together to advocate for awareness of RETT syndrome, RETT research and funding and they created assessment centers all over the country to serve their children.

Parents with children affected by CVI need to do the same. They need to come together with one voice that will bring the topic of CVI to the forefront. I monitor many Facebook pages that parents have created. They share heartbreaking stories of navigating the misinformation from medical professionals and educators as they seek the best services for their child.

The information about CVI is now decades old and building everyday. Why does it fall on the shoulders of parents with the least free time to organize this effort to help medical professionals and educator understand CVI and how CVI affects learning?  Professionals who understand CVI are out there but they are not sitting at your child’s IEP. That is where the advocacy must begin.

As parents and professionals who understand CVI, let’s begin to build the documented evidence for the IEP process that fosters the diagnosis of CVI. Let’s make sure the students are assessed using the correct tools such as the CVI Range (Roman-Lantzy). Let’s make the CVI Endorsement (through Perkins School for the Blind) mandatory for professionals working with each child. Let’s make sure there is not “vision time” but consideration of visual needs around the day and across the curriculum.

Check out Rebecca’s blog!