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Spring 2019

Winter 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

By: Karen Farnum, Parent, Coppell, TX

Abstract: A parent shares her views about Special Education and the impact recent changes have had on children who have low incidence disabilities.

Key words: family wisdom, blind, multiply impaired, cortical visual impairment, low incidence disabilities, evidenced based practice, appropriate education, No Child Left Behind, National Agenda for Students with Visual Impairments, IDEA


My child's a zebra. Well, of course not literally, and not really exactly. Actually, it is more accurate to say, my child's special education educational needs are zebra-like. What do I mean? In my prior career as a registered nurse and then as a nurse practitioner, I learned not to go looking for zebras (the rare health care occurrences) when horses (the usual, common, and ordinary) were all around. My child's educational needs are by no means usual, common, or ordinary. My child's educational needs really are zebra-like, or in the words of the Individuals with Disabilities Education Act (IDEA), my child has low-incidence disabilities.

Public education is mostly about meeting the educational needs of the usual, common, and ordinary, because at its essence, public education is all about educating the masses. I think special education as it was originally intended at its outset in 1975, was supposed to be about meeting the needs of the zebras. But as it has evolved over the past 30 years, special education today seems to be more focused on meeting the needs of the student populations served the most, not the least. Some low-incidence special education populations, such as those students with blindness, deafness, or deafblindness, have to some degree benefited from already being widely recognized as having special special education needs within the education community. But what about all the other low-incidence populations, the zebras, such as students having multiple impairments (MI) with a concomitant cortical visual impairment (CVI); are their educational needs being appropriately met? I believe the answer to this question is no, and because of this, I think the time has come to define exactly what constitutes an appropriate education for students having multiple severe challenges and specifically, MI/CVI.

I pose the above question now, due in part, to three significant events of the past couple of years. First, the IDEA 2004 regulations were finally published. IDEA 2004 seems to effectively correct many of the special education implementation pitfalls that came into practice following the Board of Education v. Rowley decision of 1982. Talk of maximizing a student's potential within special education is no longer considered taboo, but rather it is now the expectation. Since high expectations are now the norm for all students, thankfully the 70% special education competency performance standard should now forever be gone from practice. And additionally, IDEA 2004 adds the professional preparation expectation of high-quality, intensive preservice education and training for all personnel who work with students having disabilities, including those students having low-incidence disabilities. The second significant change is my awakening to the real world challenge of sustaining a high-quality special education special program over time. In the past, my child and her school has benefited from the expert involvement and intervention of the TSBVI outreach staff. But as time has demonstrated, maintaining a program's integrity, continuity, and high-level of expertise is an immense and constant challenge due to never ending changes in school staffing. And the last significant change was that Texas learned it could no longer use locally developed alternative assessment (LDAA) tools for determining adequate yearly progress for No Child Left Behind (NCLB), so the development of the TAKS-ALT measurement tool began. The 2007 TAKS-ALT field testing process was a required on-line self-tutorial and paperwork nightmare for my child's teacher that moved her away from focusing on the daily teaching and learning classroom activities, to instead creating empty, meaningless, and disconnected paperwork that had absolutely no relationship to actual daily classroom activities.

I wholly believe in and support accountability measures, but I also believe this particular time consuming and empty exercise perfectly exemplifies just how far the cart has gotten ahead of the zebras. In July 2000, Mary Morse, Ph.D., a special education consultant, penned Learning and Educational Babysitting are Incompatible: Working with Students who have Severe Multiple Challenges, wherein she outlined an appropriate program for this specific student population. I think it is time to revisit this writing, and others like it, to first develop understanding and then reach a comprehensive consensus as to what merits an appropriate education for students having severe multiple impairments, like MI/CVI. It seems logical that only once this step is completed, should the process of assessing educational effectiveness begin. Requiring special education teachers to create paper evidence that this specific low-incidence student population is making adequate yearly progress by completing meaningless paperwork exercises under the guise of TAKS-ALT accountability testing prior to defining what an appropriate education entails is just that, meaningless.

When Dr. Phil Hatlen, former Superintendent of TSBVI, addressed the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) in July 2000, he shared his personal convictions for meeting the needs of the blind and visually impaired in the 21st century. Item 12 on his list was, I believe that children with severe multiple disabilities are precious children, deserving of the very best that education has to offer. With every fiber of my being, I share Dr. Hatlen's conviction. To continue the evolution toward actually delivering the best education has to offer, and to move toward genuine TAKS-ALT accountability measures, I believe it is time to rethink the ARD/IEP development process for the low-incidence populations.

The education community could learn something from the processes and experiences utilized by the healthcare community toward developing nationally recognized standards of care for the delivery of healthcare. By utilizing a model like the one used in healthcare, a template of standard educational practice could be created for the low-incidence populations. This template should include all of the critical components, characteristics, and elements that are widely considered to be absolutely essential toward delivering an appropriate educational program for these students. The purpose of this would be to insure that no student would have to rely on an ARD/IEP committee whose members are potentially uninformed regarding the intricacies of an appropriate education for students with low-incidence disabilities, or the competency of their parent to be well informed and able to highly function as a diligent advocate, in order to receive the highly specialized programming their low-incidence disability requires. In healthcare it is well documented that patient outcomes are statistically significant better in those institutions where certain rare or high-risk procedures are common and performed frequently. Education can borrow from this model. I believe educational outcomes for the low-incidence populations can be improved by looking more to the experts and proven practices to guide the individualized educational plan (IEP).

For MI/VI, the beginnings of such a template already exist, and can be found in the Resources for Expansion of the Core Curriculum (RECC) section of the TSBVI website, . This webpage offers a one-stop shop with a multitude of resources, tools, background information, and more, all about MI/VI. Unfortunately though, sometimes IEP teams do not have experience with or information about these evidence-based effective practices, and consequently may not be implementing them. When this happens, it is ultimately the students who lose out. I believe that leading experts at the TSBVI and elsewhere in the field have been collecting, collating, and publishing the very research-based practices that have been mandated by IDEA to be implemented in our schools and classrooms. As first stated in IDEA 97, and repeated in IDEA 2004, research-based practices have not been broadly utilized in the delivery of special education. To overcome this fact, IEP teams should more effectively make use of resources such as the RECC and other web-based clearinghouses, TSBVI Outreach consultation, and vision specialists at the regional Education Service Centers. To continue the momentum toward delivering the best that education has to offer, I believe the following topics are long overdue for debate at the local, state, and federal levels:

Teacher Preparation

Can generalist special education teachers adequately and appropriately meet the unique educational needs of the low-incidence student populations? If not, then specifically, what high-quality, intensive pre-service preparation and professional development do they need to complete prior to working with students having low-incidence disabilities, such as MI/VI, in order for them to be able to deliver a free appropriate public education? For example, new graduate nurses are prepared for basic nursing practice, but not prepared to work in an ICU, OR, burn unit, or trauma center until an advanced level of training is completed. The common student populations that special education teachers are educated for and best prepared to teach needs to be defined, as does the student populations necessitating specialized special education teacher training, and the specifics of that specialized training needs to be delineated?

Lost in Translation

Over the past 5 or so years, implementation of Active Learning as described by Lillie Nielsen has been evolving throughout the state of Texas, which I believe is both good and bad. I believe it is good, because this approach is very appropriate for some students. At the same time I believe it is bad, because Active Learning if it is used alone, is not complete - and therein lies a substantial risk for the student. An appropriate education for students having MI/VI is much more than just Nielsen's Active Learning. While participating in ARD/IEP committee meetings, uninformed parents may unfortunately be swayed by the novel visual presentation of the Active Learning equipment. However, having neat equipment does not equate to having an appropriate educational program. Rather, it is actually the level of knowledge and expertise of the people implementing the program that is the most accurate predictive indicator of the program's future success. Nielsen's Active Learning is just one of several methodologies to be utilized toward delivering an appropriate education to some students with severe multiple challenges, including MI/VI. Before LEAs continue their Active Learning programs, due diligence must be exercised to insure that programs are comprised of more than just Active Learning, and that appropriate safe guards, such as inclusion and exclusion criteria, are in place to prevent inappropriate student placement in Active Learning activities. For instance consider the following question, In the absence of a student having the IDEA eligibility of VI, is Nielsen's Active Learning ever appropriate?

The Catch-22 of the Array of Placement Options

As initially detailed in the Purposes and Findings section of IDEA 97 and repeated in IDEA 2004, it has been historically demonstrated that any special education placement other than the regular classroom can potentially become a dumping ground for any and all students having unique educational needs, but without any special education being delivered. I believe in and support a continuum or array of placement options, but ONLY when an LEA has protected against repeating special education missteps of the past by instituting preventative practices, such as:

  • When the LEA has defined and publicized quality professional preparation and performance standards for ALL their special programs, has identified and acquired acceptable teaching and learning materials for the special program, and has developed curriculum guides for all components of special education.
  • When on-going over-sight or monitoring practices are in place to insure only appropriate special program placements are being made, and that quality performance standards for every placement option are actually being delivered as stated at the outset.
  • When parents and ARD committee members focus on understanding a special program's unique staff knowledge, preparation and training, and how that specific knowledge meets the student's unique needs in making placement decisions, rather than focusing on the program's location, or its equipment.
  • When all programs within the array of placement options continue to deliver an individualized education within the specialized program.

VI Intervention

Special education consultant and CVI author Mary Morse, PhD., speculates that typical vision stimulation activities are harmful to the child with CVI. Author, lecturer, and APH CVI lead Christine Roman-Lansky, PhD., shared during a lecture that she is burdened by her memories from early in her career when she terrorized children known to have CVI with typical vision activities. How are vision services the same for all students with VI, and more importantly, how are VI services different for students with CVI? How are vision services more different yet for students having both multiple impairments and CVI? Can those VI services described as being essential for students having MI/VI in Silberman and Sacks' Expansion of the Role of the Teacher of Students with Visual Impairment: Providing for Students who have Severe/Multiple Disabilities, be delivered in 30 minutes of weekly itinerant consult time?

Timely Local Training Opportunities

Are our regional service centers providing sufficient pre-service summer learning opportunities and on-going continuing education programs to address the unique educational needs of the Low-Incidence populations, and specifically MI/CVI?

Last Revision: June 5, 2008