Category: Advocacy

Hello fellow families of magnificent children who have been identified with Cortical Visual Impairment!

Long time, no blog post!

So, after the success of the American Conference on Pediatric Cortical Visual Impairment, I decided to dial it down a bit and spend some time with my family.  And, learn to play the ukelele, and run 3 miles every other day, and binge watch Fargo.

In July, a CVI mom friend of mine reminded me that Eliza’s older sister, AC, needs as much time and attention as I devote to E and her special needs.

AC’s life looks a lot like this a fair amount of the time.

Or this….

AC is as kind as she is clever and funny.  Sometimes I need to be reminded that this kid needs her time too and I have to extract her from Eliza’s bear hug.

And, she starts high school in a couple of weeks.

WHEN DID SHE

GET OLD ENOUGH TO GO HIGH SCHOOL?

Who is responsible for this?  I want to lodge a complaint.

Excuse me, I have to go hug the stuffing out of her….

Okay, I’m back.

So, I adjusted my to-do list.  I spent as much time with the teenager for as she would allow and I watched Fargo.  Success!

I hope you had some fun this summer.  I hope you had the chance to spend time with your favorite people.

Did anything interesting happen while I was gone or rather lurking in the background reading stuff and taking mental notes for the future?

Well, yes, yes it did.

Something interesting and rather unusual DID happen this summer as an attempt to affect the education of children with vision loss, and specifically Cortical Visual Impairment.

This summer, during the International Conference for the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) in Reno, Nevada, a resolution which included very specific language about the CVI Range was put forth, voted on, and passed by the attending members.

You need to be aware of this resolution.

AER and the authors of this resolution are making a statement about the work of Dr. Christine Roman-Lantzy, the CVI Range, and the recent attempts of parents to advocate for the appropriate education of children with Cortical Visual Impairment.

I have a few comments on this resolution, however, I thought it best to first ask for comment from Dr. Sandra Newcomb, from Connections Beyond Sight and Sound at the University of Maryland.  Dr. Newcomb’s research, published in the Journal of Visual Impairment and Blindness in 2010, validated the CVI Range.

Dr. Sandy read the resolution and added comments.  She very graciously allowed me to post her comments with the resolutions.  Most of her comments are in blue.  Emphasis is mine. When I got really emphatic I posted her comments in BOLD RED.

Proposed Resolution of the Association for Education and Rehabilitation of the Blind and Visually Impaired: July 2018
Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families
Resolution Number 2018-001
Authors: Yvette Blitzer, Kathryn Botsford, Olaya Landa-Vialard, Sandra Lewis, Mark Richert, and Ye-Ting Siu
Whereas to receive a truly free and appropriate public education under the Individuals with Disabilities Education Act (IDEA), all children and youth with visual impairment, including those who may have additional disabilities, should be properly evaluated by teachers of students with visual impairments (TVIs) who are equipped with and use multiple assessment tools to determine such students’ individual sensory channels, functional vision, and learning media needs;
Whereas these types of evaluations are especially critical for the large and growing population of students who experience neurological visual impairment (frequently otherwise known as cortical or cerebral visual impairment; hereinafter, children with CVI);
Whereas TVIs must also have access to resources and participate in professional development opportunities in order to keep up with the changes in the diagnosis and assessment of CVI and appropriate interventions to minimize its effect;
Whereas whenever possible, assessments conducted by TVIs should include (as called for in IDEA) a variety of research-based, data-driven, and validated tools and strategies to gather relevant functional, developmental, and academic information;

 
Whereas there are currently no assessments available to TVIs that adequately address all the possible effects of CVI and/or meet the exacting scientific standards for research-base, and validated evidence; No assessments of what? Functional vision? Academic achievement? There is an assessment that meets scientific standards for reliability and validity for assessment of functional vision. Newcomb 2010, JVIB

 
Whereas frameworks for functional vision and learning media assessments commonly used by TVIs today are nevertheless based upon recommended practices in the field; But “practices in field” is not defined here.  There is evidence that current practices are from TVIs who have been trained using an ocular model of VI and of functional vision. There is valid research that describes the differences in ocular and cortical visual impairment.  This research reveals the frameworks for ocular are not appropriate for cortical.

 
Whereas there are multiple assessment tools, frameworks and strategies available for use by TVIs when conducting a comprehensive assessment of the visual functioning and sensory channels of children with CVI, the use of which serve to support of IDEA’s mandate for the use of multiple assessment tools; IDEA mandates assessment of functional vision, or how the vision impairment has an educational impact. Multiple tools are used for assessment of multiple constructs (medical tools for diagnosis, curriculum specific tools for achievement, speech/language tools for communication, etc.) These are the multiple tools for getting a comprehensive picture of a child with multiple challenges.

 
Whereas the CVI Range by Christine Roman-Lantzy is but one assessment designed to provide information on the visual and sensory functioning of children with CVI; It is only one assessment, however, in my review of the literature (both for dissertation and ongoing review) there is no other assessment developed for assessment of functional vision for children with CVI.

 
Whereas a package of continuing education opportunities bundled under the Perkins-Roman CVI Range Endorsement brand, and any other continuing education opportunity, are valuable resources to teachers and others who wish to hone and test their skills in the administration of the CVI Range; To date, Perkins has the most continuing education opportunities relative to CVI and to children with multiple disabilities.

 
Whereas some proponents of the CVI Range and the related endorsement are seeking to have policymakers and state and local education agencies require the use of the CVI Range and to require TVIs to obtain the endorsement as a condition on such TVIs’ provision of special education to children with CVI; Who are the proponents? And why should a local system NOT require the use of the only tool that is appropriate to assess the functional vision of children with CVI?

 
Whereas a TVI’s failure to obtain specifically branded continuing education opportunities, even if such opportunities are marketed as an endorsement, and completion of professional training in an assessment tool alone is no indicator of a provider’s preparedness to conduct appropriate comprehensive assessment or provide appropriate special education programming to children with CVI or any other students with visual impairment; Branded? Marketed? Why is it not appropriate for a professional to demonstrate proficiency in an assessment tool that they need to use? There are no other assessments (in any domain) that teachers do not need to be trained on to administer. This is especially critical when the tool relies on the teacher’s observation skills as the primary means of gathering information. When an assessment tool relies on teacher observation, it is critical that the teacher demonstrate he/she is reliable in their observations, otherwise the scores on the assessment are not meaningful.

No assessment in any domain can guarantee that a teacher is able to adequately provide meaningful interventions; however, lack of appropriate assessment data on which to base intervention strategies will guarantee inappropriate or inconsistent interventions.

Only when you start with an appropriate assessment can you hope to design appropriate, individualized, and targeted interventions.

 
Whereas university teacher preparation programs are addressing the needs of children with CVI and their graduates have beginning-level competencies and skills, which can be honed through experience, mentoring, and additional professional development; I have not seen any data, no published data nor anecdotal data, that indicates that university programs are addressing the needs of children with CVI, even at a beginning level. My experience on the MD/DC deaf-blind project, my private work in VA, NJ, WV, KS, and PA, and CVI mentoring in MS and GA have shown just the opposite. Parents and teachers are not prepared to meet the needs of children with CVI. They lack information and training, even some recent graduates of vision programs.

 
Whereas some states allow for individuals to circumvent university preparation teacher training and permit licensure of TVIs via (a) minimal coursework or a (b) test-only credential and functionally allowing individuals without adequate training in assessment of children with ocular and/or neurological-based visual impairment, or program development to assess, plan, and deliver services to children with visual impairments including those with CVI; This should never happen, no matter what state, for any TVI. States should not allow individuals to circumvent proper training.

 
Whereas individuals gaining TVI licensure via a test-only modality are not prepared to assess, plan, and deliver services to students with visual impairment, including those youngsters with complex disorders, such as CVI; Agreed!

 
Whereas it is imperative that parents and guardians of such students with CVI have accurate, complete, and unbiased information about the professional training and qualifications possessed by TVIs today who are evaluating and developing individualized education programs (IEPs) to meet such students’ unique needs; Agreed!

 
Whereas knowledge about neurological visual impairment and children with CVI is evolving rapidly, and a rich body of research and related developments from around the world promises to further enlighten and change educational practice over time;

and
Whereas requiring the use of a single specific assessment today, such as the CVI Range, or the express or implied imposition of brand-specific endorsement requirements on TVIs beyond state licensure and adherence to nationally recognized TVI standards puts students at risk of being denied the most up-to-date assessments and services and needlessly locks state and local educational agencies into practices and purported credentials with a limited shelf life that do not align with federal and state law and policy; For children with CVI, who must have (IDEA) a functional vision assessment, we must insure that the assessment is appropriate for children with CVI.

The CVI Range is, at this time, the only assessment developed to accomplish this task. While it is clear AER objects to “brand-specific” endorsement, there is nothing else that can insure that our children with CVI have an appropriate functional vision assessment.

This is the only the first step in appropriate intervention, but it is a step that cannot be missed or mishandled.

What are the “nationally recognized TVI standards” that include adequate information on CVI? What is more up-to-date? The phrase “purported credentials with limited shelf life” is very inappropriate and inflammatory, and a direct attack on the extensive work done at and through Perkins. The CVI Range endorsement aligns directly with the federal and state law and policy in that a child with CVI needs an appropriate functional vision assessment.
Now therefore be it resolved, that the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER):
1. encourages personnel preparation programs training new and pre-service TVIs and O&M specialists to include coursework in assessment tools, learning needs, and instructional methodologies to support the diverse needs inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities;
2. encourages parents and teachers in all states to educate lawmakers and call for the abolition of “test-only” pathways to TVI licensure and require rigorous university preparation as the only option to gain licensure as a TVI;
3. encourages current and new TVIs to pursue continuing education and/or professional development opportunities and training to keep abreast of the ever-changing practices related to students with neurological visual impairment in order to effectively meet the unique needs of children with CVI;

 
4. encourages state chapters and divisions of AER to advocate for and promote the appropriate use of multiple comprehensive assessments, as mandated by IDEA, thereby honoring all students’ unique needs for appropriate and reasonable accommodations that recognize the diversity of functional vision, learning media, and literacy characteristics inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities; while “multiple comprehensive assessments” are indeed necessary to address needs in a comprehensive way (communication, mobility, achievement, etc.), there are not, at this time multiple assessments to measure the functional vision of children with CVI.

 
5. urges the U.S. Congress, state legislatures, and state and local educational agencies to protect the integrity of comprehensive assessments conducted by TVIs both by rejecting calls that expressly or implicitly require the use of any single specific assessment tool or technique with specific populations of students with visual impairment and by refusing to impose specifically-branded in-service training requirements on state-licensed TVIs (prepared in accordance with nationally recognized TVI standards; Council for Exceptional Children (CEC) and Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI) as a precondition for providing special education to children with CVI or any other students with visual impairment; See comments above. The “integrity of comprehensive assessments” means that a TVI can use whatever measure or observation they decide.

This insures a continuation of TVIs providing inappropriate assessments for children with CVI and then basing interventions and accommodations on those inappropriate assessments. The cycle of inappropriate interventions and frustrated parents continues!

 
6. calls upon the U.S. Congress to promptly enact the Alice Cogswell and Anne Sullivan Macy Act, which, among other critical policy objectives, would significantly increase investment in quantitative and qualitative research, allowing our field to identify evidence-based practices in assessment and instruction for children with CVI and all other students who are blind, have low vision, are deafblind, or may have these conditions and additional disabilities;

and
7. shall disseminate this resolution online and using any other appropriate means to make it widely available to parents, TVIs, and all other stakeholders to ensure national, state and local communication of these matters.

NOTE: It is my experience that parents are pushing for The CVI Range endorsement because of the lack of professionals who understand their child and who can provide the interventions they need.

Parents are advocating for professionals that demonstrate some level of knowledge, training, and competence in CVI.

At this time, the Perkins-Roman endorsement is the only avenue they have to be sure the teacher knows something about CVI. Too many families are offered services that are inappropriate or worse, no services at all. They are given TVIs that do not understand the characteristics of CVI.

The parents are looking for some way to insure that the people who design programs for their child have some working knowledge of CVI. At this time, they cannot count on pre-service programs to adequately prepare vision teachers to address the needs of their child. They are demanding, or strongly suggesting the endorsement because, for now, that is all they have.

When university programs and national standards catch up to the current population of children with CVI, parents will have done their job of advocating and systems change, not only for their child, but for all children who have CVI.

So, how’s that for a little morning reading?

Take your time with this.  Think about it.  Ask questions.   There is more to come.

And, remember…