Multiple Disabilities Survey Results

October 1, 2001

Tristan G. Pierce
Multiple Disabilities Project Leader
Educational and Technical Research Department
American Printing House for the Blind, Inc.
1839 Frankfort Avenue, Louisville, KY 40206-0085

Introduction

This project, like any other, required teamwork. In March of 2001, The American Printing House for the Blind (APH) brought together a group of vision professionals who have extensive experience working with persons who have multiple disabilities (MD), including visual impairment (VI). The combined experience of the MD Focus Group included early childhood intervention through adult rehabilitation. This group’s two-day discussion of needed materials and curricula was instrumental to the creation of the APH Multiple Disabilities survey. APH is extremely thankful for the unwavering support that we continue to receive from the field. The focus group participants took several days out of their busy schedules to assist us with the project. Furthermore, as the meeting notes were compiled and the survey took form, the group continued to act as advisors via telephone and e-mail. They will continue to support the APH development of materials to serve the VI/MD population by participating in future focus groups, serving as consultants and expert reviewers, and by identifying field testers.

A special thank you is extended to the following members of the APH Multiple Disabilities Focus Group:

• Marie Amerson, Georgia Academy for the Blind
• Scott Crawford, Affiliated Blind of Louisiana
• Steven Davies, DB-LINK/Perkins School for the Blind
• Marilyn Gense, Oregon Department of Education
• Dr. Bernadette Kappen, Overbrook School for the Blind
• Kathy Morgan, CT Dept. of Education & Services for the Blind
• Karen Nagel, W. Ross Macdonald School
• Millie Smith, Texas School for the Blind Outreach

APH is especially appreciative of the insightful and enthusiastic responses from the field. At the end of a busy school year and into their summer vacations, many vision professionals took the extra time to respond to the survey. For this, APH and the field of visual impairment will be forever grateful.

Summary

The purpose of this project was to identify products, curricula, and research that vision professionals believe crucial to the education and life of VI/MD persons. Research and field reports consistently identify literacy as one of the key factors in assuring that children progress steadily in school, young people enter the workforce and live independently, adventitiously blinded individuals retain employment, and elderly persons enhance independence in later years. So, too, is the evidence that individuals with visual impairments who do not possess adequate literacy skills are at severe risk for academic failure, unemployment, dependence on others, or decreased quality of life (Holbrook and Koenig, 1997). Whether reading is done for educational purposes or for pleasure, it opens doors both figuratively and literally. The vision professionals who responded to the survey seemed to agree. They expressed the need for more books specifically designed for the VI/MD population, as their greatest necessity.

The educator’s single most important goal with children and adults who have severe disabilities is to encourage and develop the capacity and motivation to communicate and relate to the world around them, (Korsten, Dunn, Vernon, and Francke, 1989). Jan Van Dijk wrote that the lack of language influences very deeply the behavior of the child. Although Van Dijk’s approach has been identified almost exclusively with programs for the deaf-blind, its focus on the cognitive and social precursors to language suggests applicability to broader populations of children who have severe disabilities (Battle and Stillman, 1984).

Between the first and the second year, the child is undoubtedly conscious of the symbolic values of language (Werner, 1961). The child demonstrates this consciousness in understanding and using speech. In the case of deaf-blind children, the period during which they are unaware of symbolic values within language reaches far beyond the second year of life. Some are five or six years old before they comprehend the idea of symbols. Other children are even older, and some, unfortunately, will never grasp the notion of symbols. (Van Dijk, 1965) Recognizing the importance of language and communication, the MD Focus Group created two questions for the survey about the development of a communication system using tactile and picture symbols. Both questions scored high; one of the questions ranked number two.

Teachers in the vision field are seeing an increased frequency in referrals of young children with cortical visual impairments (CVI) (Morse, 1990). Quantitatively, the majority of survey respondents ranked prominently their need for more information on CVI. Respondents also took the extra time to write written comments clarifying their needs for CVI materials.

Respondents of the survey also expressed a great need for a compiled reference specifying which company or organization is making products that serve the blind and visually impaired. Such a volume would directly aid teachers and facilitate the task of informing the student’s parents where they can locate specific materials. A complete alphabetical listing of products and their vendors would be welcomed.

Method

Participants

Two hundred twenty-one vision professionals participated in this study. Each member of the MD Focus Group selected several colleagues to complete the pilot survey and to provide feedback for the final version of the survey. The final survey was sent via e-mail to the MD Focus Group, and they disseminated it to their colleagues. It was also sent via e-mail to the 156 Ex Officio Trustees of APH with a request for them to disseminate the survey to their colleagues. Finally, the survey was mailed through the U.S. Postal Service to the 220 members of the Multiple Disabilities Division of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER).

All respondents had the option of either completing the survey on paper and mailing or faxing it to APH, or completing the survey online and sending it electronically to APH. Respondents preferred completing the survey online; 63% submitted the survey electronically while 37% used the U.S. Postal Service. Besides the United States, at least one or more surveys were received from Australia, Bermuda, Canada, Guam, Iran, and Spain.

The Instrument

The MD Focus Group participated in several discussions and presentations concerning new product ideas. They then participated in a team exercise using qualitative language data to identify and prioritize products that are needed to serve individuals who are both blind or visually impaired and multiply disabled. The result of the team exercise identified 48 product/curriculum ideas and highlighted which ideas the focus group considered to be most important. The 48 ideas were categorized and developed into a needs survey. The categories were Assessment, Communication, Curricula and Products, Research and Reference Materials, and Training Videos and Publications. At the end of each category, a space was provided for respondents to add information and comments.

A space was also provided for respondents to list their top three needed products out of the 48 suggested. This subtle redundancy helped ensure that each survey was completed correctly. Respondents were asked to rate the ideas on a scale of 1 (not valuable or important) to 5 (extremely valuable or important). When a survey was received with an unusually high amount of number 1 ratings and then the respondent chose ideas with a number 1 rating for their top three needs, then we knew the respondent had unintentionally reversed the ratings. At the end of the survey, respondents were encouraged to make any additional comments and suggest additional new product ideas.

Results

Demographic Characteristics

A separate page to collect respondent demographics was attached to the front of the survey. Of the program types that were listed on the survey, the overwhelming majority (42.9%) of respondents indicated that they worked as itinerant teachers.

Demographic Characteristics of Respondents

Variable	N(=221)¹	Percentages
Program Type
Full Inclusion	22	9.3%
Resource	15	6.3%
Res. School	49	20.8%
Itinerant	101	42.9%
Other	48	20.4%
Clients Served
Early Childhood	70	10.4%
Preschool	122	18.2%
Elementary School	154	23.0%
Middle School	133	19.9%
High School	143	21.4%
Post Secondary
Academic	18	2.0%
Vocational	27	4.0%
¹ Because some respondents did not answer every question, and because some respondents answered questions with multiple responses, N does not always equal 221.

Respondents working in residential schools (20.8%) and those working in a setting other than the choices provided (20.4%) were second and third respectively. Full inclusion programs (9.3%) and resource centers (6.3%) were other program types from which respondents could choose. Some of the program types that were listed as “other” included approved private VI schools, consultants, university teacher training, day schools, technical assistance, center-based programs, and rehabilitation centers.

The majority of respondents identified their clients by choosing multiple answers. Only 6% of the respondents work with post-secondary clients. The Demographic Table reflects the large number of vision professionals who service elementary, middle, and high school students simultaneously.

On average, respondents had 16 years’ experience working in the vision field. The range went from half a year’s experience to 35 years. Fifteen respondents each had 30 or more years’ teaching experience.

Product Needs

The individual product ratings (1 to 5) of each survey were entered into a database for easy manipulation and sorting of specific characteristics. Later, the data was imported into a spreadsheet for easy tabulation.

The need with the highest rating was age-appropriate (10-20 years old), high-interest, low vocabulary books for students with visual impairments and multiple disabilities, in which interactive output is used. While visiting residential schools and attending workshops and conferences, this need has been expressed to APH staff before. It was also recognized by the Multiple Disabilities Focus Group as one of the top needs. Below is the complete list of product ratings:

4.36	Age-appropriate (10-20 years old), high-interest, low vocabulary books for students with VI/Multiple Disabilities (MD), in which interactive output is used
4.35	Early communication tool using tactile symbols or objects and picture symbols for children who are blind, VI, or with additional disabilities
4.26	Compiled reference specifying which company is producing what kinds of products (e.g., who is making canes, etc.)
4.26	Compilation of information on cortical visual impairment
4.23	Informational guidelines and functioning learning tools that would teach parents how to buy items or use common household items to spark children’s interest in their environment
4.20	Nonverbal software games and non-reading learning activities
4.18	Resource fact sheets on appropriate curricula that can be used with students who are blind and multiply disabled
4.16	Guidelines and a video for the development of a sensory profile (sensory response, arousal states, response of each sensory channel), even for the most involved child, as part of the Sensory Stimulation Kit
4.15	O&M manual designed for those working with VI wheelchair users and/or individuals with orthopedic impairment
4.14	Guidebook on teaching functional activities that develop O&M skills to young students
4.12	Paraprofessional training manual designed for those working with low vision, blind, and those with other disabilities so one can learn how to teach different techniques for different demands
4.12	Video that would offer hope and help to parents
4.10	Sensory learning profile (similar to a learning media assessment) as part of APH’s Sensory Stimulation Kit
4.09	Curriculum for addressing autism/blindness
4.07	Structured leisure skill activities that teach and promote both physical health and functional life skills for students transitioning from high school to college or work
4.04	Teaching tools that help children transition from 3-dimensional objects to abstract representations (e.g., tactile raised line drawings)
4.03	Simple board games that are modified for VI/MD users
4.01	Guidebook on adapting switches for easier use by VI/MD students
3.97	Video and/or manual showing the ways in which products can be used to establish routines and to teach through routines
3.97	Materials that focus on special issues for the VI/MD student of transition age, such as a video showing students in a variety of working and living situations
3.92	Tactile communication cards that could help children learn to communicate
3.90	Orientation and Mobility (O&M) guide that would include diagrams showing how to make adaptive canes and demonstrate how to make canes more usable for MD students
3.90	Training video on how to use tactile stimulation
3.88	Deaf/bind simulation activities designed for in-service training of professionals
3.87	Manual to teach how to use social stories with blind and VI students
3.85	Video on various uses of the APH light box
3.82	Individual calendar boxes of different sizes that could be attached to make a series of boxes, the number of which could be adjusted to suit the unique needs of each child
3.82	Upright slant board to be used on a wheelchair tray by older/larger persons who are VI (calendar symbols for objects or pictures could be attached)
3.82	Various types of jigs to help students who have motoric difficulties
3.81	A communication device that contains braille input and braille/voice output for VI persons and print/voice output for the general publics
3.80	For VI professionals, an Internet chat room that would also offer guest speakers and virtual workshops on designated topics
3.79	Research on hand use by children with multiple disabilities
3.74	Math manipulative that helps children with motoric difficulties gain a “hands on” understanding of the base-ten number system using blocks to bundle units of ten
3.72	Research in the area of Lilli Nielson’s active learning devices, e.g., Little Room, Position Board, and Resonance Board
3.72	Wheelchair attachment for hanging materials
3.70	Raised-line coloring books
3.70	Annotated bibliography of publications regarding the multiply disabled population
3.63	Video and manual about using calendar boxes
3.49	Comprehension tapes that answer who, what, when, and where questions while incorporating functional living skills for residential students
3.47	Large print and/or braille materials for teaching English as a second language
3.37	Labeling system that allows one to specify which food group one wants when ordering the labels
3.32	Curriculum guide designed to help desensitize children for medical/dental visits
3.31	Fishburne labels for those adults unable to read Braille but who need to identify household goods
3.29	Spanish translation of some DB-Link (deaf/blind) publications
3.28	Accessible GED materials
3.25	Screening tool for Usher Syndrome (retinal pigment epithelium degeneration accompanied by congenital nerve deafness)
3.14	Jumbo slates/braillers more available
3.06	Cards to help those with visual impairments communicate with the general public, e.g., “Please help me cross the street.”

Written Comments

One hundred and thirty-six respondents (out of 221) provided written responses to specific items on the survey or made more lengthy open-ended comments at the end of the survey. Several major themes emerged: the need for more effective ways to communicate with parents (providing realistic and encouraging information about their children’s potential without offering false hope and how parents can play a continuing educational role after school hours); the need to increase the use of videos for both parental communication and professional training purposes; and the need to provide more information to teachers about cortical visual impairment. Below are some of the comments.

• “I think a video would be wonderful. I continue to be amazed as to how little information parents have on the system, advocacy, where to turn for help, etc.”
• “Especially with the preschool/EI groups, this kind of take home and absorb format

  would be most helpful.”

• “Videos for parents should also include ‘best practices’ for services from a quality program for the blind and visually impaired in the itinerant, resource and residential settings.”
• “It is so helpful to have resources to offer a parent who struggles to understand their child and see the light at the end of the tunnel.”
• “Parents’ resources (good ones) are always needed.”
• “As a parent of a daughter with additional disabilities, who is successful in her own right, I believe that a positive video with parents and children doing productive things would be useful.”
• “Videos explaining conditions might help parents gain a better understanding of their child’s abilities.”
• “any parent video/resource”
• “All depends on how presentation is developed and who uses it. Parents may not get the same benefit from a video when a VI professional is not present to offer clarification or additional information.”
• “Communication is very important when trying to meet the needs and wants of our students. Without it, our students do not have control in their environment. The parents are always calling us to find out what works and what does not. They are also interested in videotapes for the home.”
• “Video for parents of children with VI and a separate video for children/spouses of adults with VI.”
• “Videos, videos, and more videos with real-life children doing the activities.”
• “I need something to help with ‘life mapping’ – for parents and teachers. It would help identify realistic goals for home and school.”
• “Please consider doing an IEP video on a blind student, or several videos, each focusing on an age-specific student. A video regarding several children who are blind and have additional disabilities would also be helpful.”
• “All videos would be useful to support staff. My fear, however, is that some districts may use videos to train non-credentialed, unmonitored staff.”
• “Videos should not focus solely on vision loss. For example, a video portraying multihandcapped/VI students interacting with teachers would be nice.”
• “It would be great to include within the video vision professionals who have developed creative lessons and activities for their VI/MD students.”
• “I would like to see more information regarding techniques and materials for working with older children with CVI and CP.”
• “I have my first CVI student, and he presents a new learning experience for me. Any information on CVI and teaching CVI students would help me.”
• “Most VI teachers probably have 6-10 different handouts from workshops, symposiums, etc. regarding CVI. A condensed volume of current research projects may be helpful.”
• “CVI is the one topic I am always being asked about.”
• “CVI is seen frequently in our school’s population.”
• “Research on cortical visual impairment & training video/materials.”
• “Many of my students are severely cognitively disabled and have CVI. I feel inadequate when working with them.”
• “Badly needed is continuous training specific to those teachers of the visually impaired who must understand the needs of and appropriately plan instructions for the CVI and the multiply disabled population.”

Conclusion

Limitations

Although the focus group had representatives specializing in early childhood intervention through adult rehabilitation, the combined number of representatives with experience in early childhood programs and school age education resulted in a majority of representatives who work with children. This resulted in a higher number of product needs being identified for the younger population. Likewise, the majority of survey respondents work with children. Very few post-secondary educators and rehabilitation professionals responded to the survey. The products that rated the lowest were those targeted for adult populations (e.g., labeling system that one can specify which food group one wants when ordering the labels; Fishburne labels for those adults unable to read Braille but who need to identify household goods; accessible GED materials; jumbo slates/braillers more available; cards to help those with visual impairments communicate with the general public). This does not mean that these particular items are not needed, they just are not a high priority for children.

Recommendations

Several recommendations can be drawn from this project. In our enthusiasm to respond to the many calls that APH receives asking for products to serve the VI/MD population, we created a focus group that could provide information on all ages. To better serve the adult VI/MD population, a separate focus group should be established. This is a population that might be unintentionally overlooked in a focus group designed for the adult blind population. The combination of being an adult, being blind or visually impaired, plus having additional disabilities, identifies this group as having special needs that can not be addressed in other arenas.

The quantitative numbers can give us a prioritized list of what vision professionals see as needed. However, one can not ignore the fact that the subjects of “parents + communication + videos” repeatedly came to the forefront whenever a respondent took the extra time to express a view in writing.

The results of the survey listed age-appropriate (10-20 years old), high-interest, low vocabulary books for students with VI/MD in which interactive output is used, as the most needed product. An early communication tool using tactile symbols or objects and picture symbols for children who are blind, visually impaired, or with additional disabilities rated as the second most needed product. A compiled reference specifying which companies are producing what kinds of products, (e.g., who is making canes, etc.) and a compilation of information on cortical visual impairment rated equally as the third most needed product.

APH will refer to the results of the Multiple Disabilities Survey when future VI/MD products, curricula, and research are being considered for development. The survey has helped confirm what the greatest needs are, and it has identified many insightful professionals in the field who are interested in working with APH as consultants and field test reviewers. Once again, APH would like to extend our appreciation to all who participated in this project.

References

Battle, C. W. & Stillman, R. D. (1984). Developing prelanguage communication in the severely handicapped: an interpretation of the Van Dijk method. In Seminars in speech and language (pp. 159-169). New York: Theime-Stratton Inc.

Holbrook, M. C. & Koenig, A. J. (1997). Forward. In M. Holbrook & A. Koenig (Eds.). Proceedings of the second biennial conference of getting in touch with literacy (p. 5). Alexandria, VA: Association for Education and Rehabilitation of the Blind and Visually Impaired.

Korsten, J., Dunn, D., Vernon, T., and Francke, M. (1989). Every Move Counts: Sensory Based Communication Techniques(p. 3). San Antonio, TX: Therapy Skill Builders.

Morse, M. T. (1990). Cortical visual impairment in young children with multiple disabilities. Journal of Visual Impairment & Blindness, 84, 200-202.

Van Dijk, J. (1965). The non-verbal deaf-blind child and his world. His outgrowth toward the world of symbols. In Verramelde Studies I (pp. 73-110). Sint Michielsgestel, Holland: Instituut voor Doven.

Werner, H. 1961. Comparative psychology of mental development (p. 250). New York: Science Editions.