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WATA Bulletin: Fall 2005

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Survey examines use of assistive technology by young people who have spina bifida

Laurie McHale, Public Information Coordinator, UW Center for Technology and Disability Studies

An estimated 70,000 people in the United States have spina bifida. In the most common form, myelomeningocele, a portion of the spinal cord protrudes through an opening in the back. Despite surgery shortly after birth, the condition can cause leg paralysis and difficulties with bladder and bowel control. Hydrocephalus-accumulation of fluid in the brain-is also common and can result in learning disabilities. There is also evidence that many people with spina bifida experience chronic pain, depression and other secondary conditions.

Although there has been considerable research on the use of mobility aids by people with spina bifida, no comprehensive research has been conducted on the use of other forms of assistive technology (AT) by people with spina bifida, nor has there been research on the impact of AT on quality of life, independence and reduction of secondary conditions such as depression.

To remedy this lack, Kurt Johnson, Ph.D., of the University of Washington Center for Technology and Disability Studies and the UW Department of Rehabilitation Medicine, and his colleagues are examining the use of assistive technology (AT) devices and the incidence of secondary conditions, with funding from the Centers for Disease Control. Johnson and his fellow researchers expect that when people with spina bifida use appropriate AT, they will experience reduced levels of pain and depression and will be able to participate at a higher level in home, school, work, and community activities.

The researchers are learning, however, that people with spina bifida are not taking advantage of the wide range of devices available, with the exception of those devices that aid mobility, such as leg braces, crutches and wheelchairs.

The study is being carried out in two phases. The first phase utilized a database, maintained since 1960 by David Shurtleff, M.D., at Children's Hospital and Regional Medical Center in Seattle, to estimate the utilization of various types of assistive devices among a large sample of young people with spina bifida, aged 13 to 28. This phase also included an analysis of State of Washington Medicaid data, showing costs associated with durable medical equipment, personal assistive devices and medical supplies from all cases of spina bifida in the state.

The second phase involves telephone and face-to-face interviews with 70 teens and young adults with spina bifida, aged 14 to 23. The goal of this phase is to examine the personal experiences of young people with spina bifida and gain their perspectives on their use, or non-use, of assistive technology. The survey includes questions about mobility, pain, depression and barriers to full participation in life, both physical and attitudinal. Participants are being asked about the characteristics of their disability, their participation in education and employment, their utilization of assistive technology, and their ability to be independent, both in terms of personal care and in moving about in the community.

Survey results thus far are somewhat contrary to researchers' expectations. Since learning difficulties often accompany spina bifida, the researchers had hoped to find that at least some of the study participants would report that they use AT to help with such tasks as reading, writing, fine motor skills like handwriting, organizing and memory recall. For example, a student might find it useful to use software developed for people with learning disabilities that highlights a word and "reads" the text with synthesized speech. However, the only assistive technology devices that respondents reported with any frequency were related to their mobility needs.

A second finding was also surprising. A number of the young people involved in the study report that they do not participate in community life to any significant degree and seem to have not transitioned successfully into employment and independent living.

Although there are likely a number of factors that contribute to this low level of participation, the researchers speculate that if appropriate AT were in place to support learning, mobility and other activities of daily life, the young people with spina bifida would be able to participate more fully in home, school, employment and community life.

The researchers have advised the CDC of their preliminary results and have asked for additional funding to look more closely at the issue of spina bifida and use of assistive technology.


Settlement reached in hearing-impaired student's real-time captioning complaint

Sherrie Brown, JD, EdD, Policy Specialist, UW Center for Technology and Disability Studies

The Seattle Office of the U.S. Department of Education's Office for Civil Rights (OCR) recently reached a settlement agreement with Highline Community College (HCC) regarding a student's request for real-time captioning. The complaint alleged discrimination under Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act (ADA).

A profoundly hearing-impaired student in the HCC paralegal program had requested word-for-word real-time captioning for her classes, supported by medical documentation. Instead, HCC provided her with in-class transcription, based on a meaning-for-meaning system. The student used this system for about half the quarter, and then notified the college that the transcription service was leaving out important information and was inadequate. She again requested real-time captioning, which was not provided. She filed an OCR complaint, alleging that "HCC had discriminated against her on the basis of her hearing disability by failing to provide her with auxiliary aids to ensure that the communication of classroom information was as effective for her as for other students."

Section 504 and ADA Title II both require that communication with disabled individuals be as effective as communication with others and that "appropriate auxiliary aids and service where necessary to afford an individual with a disability an equal opportunity to participate in
and enjoy the benefits of a service, program or activity . . . be provided."

OCR extensively investigated this complaint. The agency reviewed examples of the transcript given to the student using the meaning-for-meaning transcription service and compared it with another student's audiotapes of the same lectures. The conclusion was that the meaning-for-meaning transcription service was not providing "communication that was as effective as (that) afforded to other students" as the laws require. OCR stated that important legal terminology discussed in class and examples used by the instructor to illustrate legal concepts were missing completely, incomplete or inaccurate in the transcript. OCR also "identified many instances where information was summarized to the point that it did not accurately reflect, in 'real time,' what was occurring in the lecture or classroom at the time the information was transcribed." Finally, OCR did not find that the service "selected by the college was as effective as that
requested by the student."

Highline agreed to change its policies and practices. The settlement agreement included both college-wide actions and actions to specifically address the needs of the hearing-impaired student. The college-wide actions included reviewing and revising policies and procedures to
ensure that appropriate auxiliary aids and services are provided if necessary so that hearing-impaired students have "access to communications that are as effective as communications with others and that afford such students an equal opportunity to participate in and enjoy the benefits of the college's programs and activities." HCC agreed to ensure that policies and procedures allow for individualized determination regarding requests for auxiliary aids and to give primary consideration to student requests unless the college can provide equally effective aids and services. The agreement allows HCC to request that a student participate in an assessment by a qualified hearing specialist, whose recommendations will be considered. Finally, HCC agreed to provide information to its staff and faculty about the new policies and procedures.

For the student involved in the case, HCC agreed to do the following: provide real time transcription of class lectures and discussions and otherwise ensure that the student has access to all of the content and discussion; provide written transcripts (based on the real-time
transcription) within a reasonable time following the class; allow the student, if she desires, to repeat all the courses in which she was enrolled when she filed the OCR complaint); amend the student's transcript to reflect the revised grades in the repeated courses, waive
the tuition and fees for those courses and compensate her for reasonable non-tuition expenses that she incurs as a result of repeating the courses; and compensate her up to $100 for non-tuition expenses if she must attend an additional quarter to complete the paralegal program.

Settlement agreements such as this have limited legal authority outside the specific case because the complaint was not litigated. Nonetheless, the findings and OCR conclusions in this case are important to students in post-secondary education institutions who use real-time captioning as well as other auxiliary aids. This particular hearing-impaired student
was ultimately provided the auxiliary aid that she needed to participate in the paralegal program and other students in the future will benefit from the new policies and procedures that HCC will implement.

Documents related to this case are available online at www.wata.org/policy:

OCR Resolution Letter to Highline Community College:
http://watap.org/pubs/OCR-34981-v1-Highline_CC_Resolution_Letter_to_College-FINAL.htm

OCR Settlement Agreement with Highline CC:
http://watap.org/pubs/OCR-35002-v1-SETTLEMENT_AGREEMENT__FINAL_(1).htm


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The WATA Bulletin is supported by grant H224A3006 from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, to the Division of Vocational Rehabilitation, Olympia, WA.

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