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Report of the APH Birth to Grade 12 Multiple Disabilities Focus Group and Survey
Introduction
In 2001, the American Printing House for the Blind (APH) hosted a multiple disabilities focus group and conducted its first online survey to identify product needs for individuals who have visual and multiple impairments. The results of that survey guided APH over the last 10 years in the development of products for this population. In 2011, APH revisited this issue and hosted two multiple disabilities focus groups: birth to grade 12 and adult.
The Birth to Grade 12 Multiple Disabilities Focus Group met in March 2011. Tristan Pierce, APH Multiple Disabilities Project Leader, facilitated discussions for the 2-day event. Ralph Bartley, Ph.D., welcomed the group and participated in the discussions. The combined experience of the focus group members included early childhood intervention through teenage transition. Kay Ferrell, Ph.D., and Jane Erin, Ph.D., facilitated the early childhood small discussion group and the school-age small discussion group, respectively. The group’s discussion of needed materials and curricula was instrumental to the creation of the “Product Needs Survey for Children Birth to Grade 12 Who Have Visual Impairment and Multiple Disabilities.” APH is extremely thankful for the support that we continue to receive from the field. The focus group participants took several days out of their busy schedules to assist APH with the project. As the meeting notes were compiled and the survey took form, the group members continued to act as advisors via telephone and e-mail. They will continue to support the APH development of materials to serve young people who have visual and multiple impairments by serving as consultants and expert reviewers and by identifying field testers.
A special thank you is extended to the following members of the APH Birth to Grade 12 Multiple Disabilities Focus Group:
- Bryan Ayres, Easter Seals Arkansas
- Julie Durando, Virginia Project for Children and Young Adults with Disabilities (VA Deaf-Blind Project)
- Jim Durst, Indiana School for the Blind and Visually Impaired
- Jane Erin, University of Arizona, APH Scholar in Residence
- Kay Ferrell, National Center on Severe and Sensory Disabilities, APH Scholar in Residence, CO
- Todd Reeves, Western Pennsylvania School for Blind Children
- Millie Smith, Retired, APH Consultant, TX
- Nancy Steele, National Consortium on Deaf-Blindness, TN
- Margaret Vinsel, Visually Impaired Preschool Services, KY
Several APH staff participated in the discussions: Jeanette Wicker, Sandi Baker, Loana Mason, Burt Boyer, and Suzette Wright.
APH appreciates the 279 insightful and enthusiastic survey responses that we received. For this, APH and the field of visual impairment will be forever grateful.
Purpose
The purpose of this project was to identify products, curricula, and research that vision professionals believe crucial to the education and life of infants, children, and teens who have visual and multiple impairments. APH is dedicated to helping all individuals live independent, satisfying, and productive lives.
Overview of Population
The Individuals with Disabilities Education Act (IDEA) Sec. 300.8(c)(7) defines multiple disabilities as the following:
Multiple disabilities means concomitant impairments (such as mental retardation-blindness or mental retardation-orthopedic impairment), the combination of which causes such severe educational needs that they cannot be accommodated in special education programs solely for one of the impairments. Multiple disabilities does not include deaf-blindness. (U.S. Department of Education, Office of Special Education and Rehabilitative Services, 2006, p. 46756)
To clarify, Sec. 300.641(d)(2) states that “a child who has more than one disability and is not reported as having deaf-blindness or as having a developmental delay must be reported under the category ‘multiple disabilities’” (p. 46804). Infants and toddlers who have disabilities (birth–2) and their families receive early intervention services under IDEA Part C, and youth (ages 3–21) receive special education and related services under IDEA Part B.
The U.S. Department of Education, Office of Special Education and Rehabilitative Services, and Office of Special Education Programs (2011) states the following information in the 30th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2008:
In 2006, there were 304,510 infants and toddlers birth through age 2 served under IDEA, Part C. Of these, 299,848 were served in the 50 states and the District of Columbia. This number represented 2.4 percent of the birth-through-2 population in the 50 states and the District of Columbia. (p. 14)
In 2006, IDEA, Part B served 714,384 children ages 3 through 5. Of these, 706,635 were served in the 50 states, the District of Columbia and Bureau of Indian Affairs (BIA) schools. This number represented 5.8 percent of the general population ages 3 through 5. (p. 25)
In 2006, a total of 6,081,890 students ages 6 through 21 were served under IDEA, Part B. Of these students, 5,986,644 were served in the 50 states, the District of Columbia and Bureau of Indian Education schools. This number represented 9.1 percent of the general population ages 6 through 21. (p. 42)
A “low-incidence disability” is one where only a small proportion of a population has the particular disability. IDEA categorizes the following disabilities as low-incidence disabilities: deafblindness; hearing impairments; traumatic brain injury; visual impairments; and non-IDEA, Part B, disabilities identified by parents (e.g., comprehension problems, hand-eye coordination). Of the percentage of students ages 6–21 served under IDEA, Part B in the Fall of 2006, 10.3% were categorized as having a low incidence disability (labeled as “Other disabilities combined” category); this includes 2.2% with multiple disabilities, 0.4% with visual impairment, and less than 0.1% with deafblindness.
From 1996–97 through 2005–06, there was little change in the relative standing of the dropout percentages for the various disability categories. Students who exited special education and school who were served under the categories of visual impairments and hearing impairments were consistently among the students with the lowest dropout percentages. (p. 68)
APH plays a role in helping students who have visual impairment and blindness (including those with additional disabilities) to have access to educational materials that will assist them in learning, and hopefully to want to stay in school. In 1879, Congress enacted the Federal Act to Promote the Education of the Blind. This act established the means to provide adapted educational materials to eligible students who meet the definition of blindness. An annual registration of these students determines a per capita amount of money designated for the purchase of educational materials produced by APH. These funds are credited to Federal Quota accounts, which are maintained and administered by APH and Ex Officio Trustees throughout the United States (American Printing House for the Blind, n.d.).
The first APH Multiple Disabilities Report (Pierce, 2001) stated that teachers in the vision field were seeing an increased frequency in referrals of young children with cortical visual impairment (CVI). Ten years later, CVI is still a constant denominator; survey respondents mentioned CVI 24 times in the qualitative comment sections of the 2011 survey. Traditionally, cognitive levels of children who have multiple disabilities are listed as mild, moderate, severe, and profound. Data collected by APH product field tests show that more and more students who have severe and profound disabilities are using APH products. Experienced teachers and consultants in the field are helping APH to develop new developmental approaches to teaching young learners with visual and multiple impairments.
Method
Participants
Professionals who work with infants, children, and teens who have vision loss and additional disabilities and parents of said population participated in this study. Several members of the Birth to Grade 12 Multiple Disabilities Focus Group selected colleagues from six states to complete the pilot survey and to provide feedback for the final version of the survey. Two questions were written more clearly as a result of the pilot. The survey was designed to be completed in minimal time; no question required a response in order to continue or submit the survey. The survey was announced and a link disseminated through the APH News, an electronic monthly newsletter. APH sent reminder e-mails to the 142 Ex Officio Trustees of APH. The link was posted on the announcement board of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) website. Requests to disseminate the survey link were sent to AER state chapters, the National Consortium on Deaf-Blindness, and various state and local agencies who serve children with visual impairments. Individuals forwarded the survey link to Internet member listservs.
The Instrument
The focus group participated in several discussions and presentations concerning new product ideas. The group divided in half for smaller group discussions on early childhood and school-age children. The entire group then participated in a team exercise using qualitative language data to identify and prioritize products that are needed to serve children who have visual and multiple impairments. The team identified 24 product/curriculum ideas and highlighted which ideas the focus group considered most important. The 24 ideas were categorized and developed into a needs survey. The five categories were Assessment, Early Childhood, Core Curriculum, Expanded Core Curriculum, and Videos and Publications. At the end of each category, a space was provided for respondents to add information, new product suggestions, and comments. The survey was created in Google Docs because it is accessible to screen readers. Google Docs provides a summary of quantitative data and collects qualitative comments.
A space was also provided for respondents to list their top three product needs from the 24 suggested. This subtle redundancy helped ensure that each survey was completed accurately. Respondents were asked to rate the ideas on a scale of 1 (not valuable or important) to 5 (extremely valuable or important). If 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 would know the respondent had unintentionally reversed the ratings; however, this did not happen with any of the responses received. At the end of the survey, respondents were encouraged to make additional comments and suggest additional new product ideas that they feel are needed more than their top three picks from the survey.
Results
Demographics
Two hundred seventy-nine individuals (273 professionals and 6 parents) submitted surveys from 43 states. Texas submitted the most surveys (35) followed by Missouri (26), California and Washington (each 24), and Indiana (20). Alaska (1) and Hawaii (4) both submitted surveys. Two respondents submitted surveys from outside the United States.
The respondents are highly educated; 98% have a college or graduate degree. The majority (81%) are female. Many years of professional experience are represented in the survey; 65% have worked with children with visual and multiple impairments for more than 10 years. Respondents said that the majority of them (51%) work in a school, 46% are employed by a state or federal employer, and 10% work for a private non-profit employer. Seven percent work for residential agencies, and 4% work in day programs. None of the respondents work in a medical center, and 6% said they work in a setting other than the choices listed on the survey. Respondents were able to select all employers that applied to them, so the total exceeds 100%. It is possible that a respondent works at a private, non-profit, and residential school. See Table 1: Demographic Characteristics of Respondents.
Table 1: Demographic Characteristics of Respondents
| Variable | (N=279)* | Percentages |
|---|---|---|
| Education | ||
| High school degree | 6 | 2% |
| Associate degree | 3 | 1% |
| College degree | 38 | 14% |
| Graduate degree | 231 | 83% |
| Years working with children who have visual and multiple impairments | ||
| Less than 6 years | 41 | 15% |
| 6-10 years | 57 | 20% |
| 11-20 years | 83 | 30% |
| 21-30 years | 60 | 22% |
| More than 30 years | 37 | 13% |
| Employer | ||
| State/Federal | 126 | 46% |
| Private non-profit | 26 | 10% |
| Residential | 18 | 7% |
| Day Program | 10 | 4% |
| Medical Center | 0 | 0% |
| School | 140 | 51% |
| Other | 17 | 6% |
* Because some respondents did not answer every question, and because some respondents answered questions with multiple responses, N does not always equal 279.
The respondents were instructed to check all certifications, licenses, or other credentials that they have. Most respondents checked more than one answer. It is not unusual for a teacher of persons who have visual impairment to also be a low vision specialist or an orientation and mobility specialist. See Table 2: Certifications, Licenses, and Other Credentials. Answers submitted under the “Other” category include a wide range from school psychologist and assistant principal to a braille transcriber and parent.
Table 2: Certifications, Licenses, and Other Credentials
| Title | No. |
|---|---|
| Teacher of Persons with Visual Impairment | 207 |
| Other | 163 |
| Orientation and Mobility Specialist | 80 |
| Speech Language Pathologist | 5 |
| Professional Counselor | 3 |
| Agency Trained | 5 |
| Low Vision Specialist | 5 |
| Occupational Therapist | 4 |
On average, 79.6% of children served have visual impairment/blindness with an additional disability. This average was determined by 263 responses. Several responses were eliminated as they were not submitted with a quantitative value (e.g., responses such as “varies as consultant”).
Product Needs
Respondents rated the product needs on a scale of 1 (not valuable or important) to 5 (extremely valuable or important). See Table 3: Percentage of Respondents Who Rated a Product Need Extremely Valuable or Important.
Table 3: Percentage of Respondents Who Rated a Product Need Extremely Valuable or Important
| Percentage | Product need |
|---|---|
| 60% | Items to explore/manipulatives for children |
| 55% | iPad apps for teachers for APH products (e.g., APH Light Box) |
| 55% | School-age math specific adaptations |
| 54% | Handbook for professionals—who are not teachers of persons with visual and multiple impairments—about children with visual and multiple disabilities |
| 53% | Manual that outlines adaptation ideas for teaching expanded core curriculum |
| 53% | More print/braille books from the commercial market that contain rhyme and appealing language |
| 53% | Pre braille products for adolescents such as an experience book geared towards interest |
| 53% | Chewable, washable, early books |
| 52% | School-age science specific adaptations |
| 51% | Paraprofessional training manual |
| 49% | Wireless switches |
| 48% | Video series for parents of children with visual and multiple impairments |
| 44% | Transition planning template (including an assessment and how to make decisions) |
| 42% | Video vignettes (e.g., limited hand use, Van Dijk resonance games, tactile modeling, waiting for response) |
| 39% | Functional Assessment with hearing component for TVIs |
| 38% | Literacy manual for deafblindness |
| 36% | Series of appetite-whetting handouts or downloads (e.g., Ten BIG Ways to Interact, Why Address Visual Impairment First) |
| 34% | Touchable (also audible) friendly books in which aesthetics are important and appealing to the child, with less emphasis on meaning in the tactiles supplied |
| 33% | Web or catalog cross-reference of APH products to needs and functions |
| 29% | Video of life span experiences of individuals who have visual and multiple impairments |
| 27% | Product Web cast, “I Just Want to Know What to Do” |
| 26% | Adaptations of APH board games such as devices for stabilization |
| 26% | Transition tote for teens not going to competitive employment |
| 24% | Auditory curriculum on safety |
Respondents had the opportunity to list three products from the survey that they feel are needed most. Table 4: Top Three Product Needs shows the number of times respondents chose the product need as one of their top three choices. The product with the highest percentage points for being valuable or important—items to explore/manipulatives for children—is not rated as one of the top three product needs.
Table 4: Top Three Product Needs
| Points | Product need |
|---|---|
| 43 | Manual that outlines adaptation ideas for teaching expanded core curriculum |
| 35 | iPad apps for teachers for APH products (e.g., APH Light Box) |
| 31 | Handbook for professionals—who are not teachers of persons with visual and multiple impairments—about children with visual and multiple disabilities |
| 28 | School-age math specific adaptations |
| 25 | Video vignettes (e.g., limited hand use, Van Dijk resonance games, tactile modeling, waiting for response) |
| 25 | Paraprofessional training manual |
| 24 | More print/braille books from the commercial market that contain rhyme and appealing language |
When Table 3 and Table 4 are compared, there are four products that are rated highly on both lists. See Table 5: Product Needs—Most Valuable Compared to Greatest Need. One product need addresses expanded core curriculum—a manual that outlines adaptations for teaching expanded core curriculum—and another one addresses a core curriculum subject—school-age math specific adaptations. The other two product needs, iPad apps for APH products and a handbook for professionals who are not teachers of persons with visual and multiple impairments, are general and adaptable enough to use across all disciplines.
Table 5: Product Needs—Most Valuable Compared to Greatest Need
| Percentage | Points | Product needs |
|---|---|---|
| 53% | 43 | Manual that outlines adaptation ideas for teaching expanded core curriculum |
| 55% | 35 | iPad apps for teachers for APH products (e.g., APH Light Box) |
| 54% | 31 | Handbook for professionals—who are not teachers of persons with visual and multiple impairments—about children with visual and multiple disabilities |
| 55% | 28 | School-age math specific adaptations |
Written Comments
At the end of each category in the survey, respondents were given the opportunity to identify additional product needs within that category and to provide general comments. Within the general comments, certain words were repeated numerous times: CVI (repeated 24 times), training (12 times), iPad (9 times), and social skills (7 times).
Respondents also had the opportunity to list product needs—not listed in the survey—that they feel are more important or valuable than the items listed in the survey. Many are repeated from the comment sections at the end of each category. Respondents listed the following product needs, some of which are already available on the commercial market; therefore, APH would not use its limited funds to manufacture products that already exist (see Appendix A).
- Training with communication devices, i.e., how to use a step-by-step in a group activity, etc.
- Freestanding, foldable study square for distractible student during one-to-one instruction
- iPad for children who have deafblindness
- Resources are needed that assist family members, multidisciplinary professionals, and paraprofessionals to practice role release, team building strategies.
- Braille and large print hundreds board
- Simple braille info for parents and teachers so that it is reinforced as much as possible
- Braille curriculum that teaches the rules and the Braille Code; not a reading curriculum, like Patterns, just a braille curriculum for inclusion or for students who are dual media
- Tactile object boards that are made of hard plastic for manipulation and communication needs
- Computer programs that are Mac accessible. Macs have built-in voice reader and Zoom. Many schools use Macs. Math Flash, Teacher’s Pet, and Talking Typing Teacher, etc., are not available on that platform.
- Younger kid revision to Talking Typing Teacher with a little more fun and humor would make a good program fantastic.
- More items for CVI
- Improved transition tote/backpack with adjustable straps (We like the current one except the straps need to be cinched and tied to fit properly.)
- More books featuring characters who are visually impaired (and updated with empowering themes)
- More resources on obtaining audio-described videos on the Web—science teachers often use one “Brain Pop” video per day and my students should have better access to daily instructional tools.
- Tool to educate students on their vision impairment, how to self-advocate, how to deal with peers/adults/community, like a storybook or activity book; something that could be adapted for all ages
- Social stories related to kids with VI (including how to deal with unkind and nosy remarks and how to explain one’s visual disability to peers)
- Stickers with numbers in Nemeth that go up to 99
- Tactile Graphing paper on 24″ x 23″ paper with lines spaced at 1″
- Tactile Graphing paper on 24″ x 23″ paper with lines spaced at 3/4″
- Dot inverter that produces a jumbo dot or shape for students to mark the correct answer or to place a mark when graphing
- Hi dots or foam dots, about 1/4″ diameter (self adhesive in a box to preserve adhesive without drying out)
- Individual state maps in large print and raised lines on a paper size 15″ x 21″—no smaller
- Accessible games for students with multiple disabilities, but which are attractive to same-age peers so that my students have something of value to share with peers
- Bridge products that allow my students to build social skills in authentic situations
- Globe for academic students—the one that APH currently offers is of poor quality. The old model that was made of hard plastic was much better for tactual learners.
- Van Dijk or Lilli Nielsen type materials for children who function under 12 months cognitive level
- Materials that go along with state standards—it is hard sometimes to align activities with state standards.
- Social Skills curriculum
- Completed Address Earth for rest of world
- More sensory and fine motor products for severe/profound population relating to basic ADL tasks
- Communication strategies for non-verbal learners
- Assessment of young children
- An APH braille compass or a talking compass with lessons. Our O&M students use these, and APH does not have those available for our students.
- An APH writing series—Our students are tested on writing in their State Academic area. Fun learn-to-write stories would encourage teachers to use the methods and students to learn the skills.
- Activities for the Franklin Language Master—I know that it is not for the MIVI/AI, but it is needed.
- Portable, weatherproof schedule boards
- Getting to Know You Social Skills Curriculum
- KeyMath™ 3 Assessment
- More great light box pictures with colored background like those recently produced
- Social skills materials/curricula that incorporate sexuality education across the age and functioning levels
- Improve the Invisiboard—give it feet so it is steadier. (They fall over all the time!)
- Light Box revision
- Variety of spinning flashlights/lighted toys that do not make noise
- Ways for families to meet and interact with other families regularly to learn how important it is for them to instill self-determination in children
Conclusion
Limitations
APH activated the online survey on September 1, 2011, and sent electronic notices and reminders throughout the month. APH deactivated the survey on October 1, 2011, so preliminary results could be compiled for an input session at APH’s 143rd Annual Meeting of Ex Officio Trustees on October 14. Session attendees requested that the counterpart to the Birth to Grade 12 Survey—the Adult Survey—be reactivated so more people could complete the survey. APH decided to reactivate both surveys until November 15. September is the first month of school for many school districts, so it is very busy. The extension did allow more professionals to complete the survey, whereas initially many teachers may have been too busy in September to complete an online survey.
Recommendations
Several recommendations can be drawn from this project. Teachers continue to requests products for learners who have CVI. APH understands that many products, which are designed specifically for CVI, are equally beneficial to non CVI learners who have visual and multiple impairments. It is important to keep universal and cross-reference of product design in mind when products are created.
Education mirrors the business world and personal choices that people make for their leisure time. Technology is in demand. APH’s newer software products perform on cross platforms; however, some of the older software products need to be rewritten to perform on multiple platforms (e.g., Mac and PC). APH is active in the investigation and development of iPad apps for existing and new APH products.
The request for a handbook for professionals—who are not teachers of persons with visual and multiple impairments—about children with visual and multiple disabilities is different from a handbook for paraprofessionals, which was identified in the 2001 Multiple Disabilities Survey. Perkins School for the Blind publishes the Perkins Activity and Resources Guide: A Handbook for Teachers and Parents of Students with Visual and Multiple Disabilities (2004). This publication addresses school-age children with moderate visual and multiple disabilities. APH will research to determine if other resources are available and if yes, for what specific age and level of visual and multiple impairment.
Adapted core curriculum products, especially mathematics, are still in demand. APH introduced over 10 new math items in the past 5 years. These products were designed to meet national standards. There is not a one-way-fits-all approach to teaching any subject. Many innovative teachers modify lessons when they use APH products to meet the individual needs of their student(s) with multiple disabilities. A short online video that shows how to modify a lesson for a student who has visual impairment with a specific additional disability when using an APH product might help beginning teachers see the possibilities of modifications to meet the needs of their student(s). The request for school-age math adaptations covers a wide range of product possibilities. APH will conduct a more detailed math specific survey to determine the types of math products that are needed for students with visual and multiple impairments.
APH will refer to the results of the Product Needs Survey for Children Birth to Grade 12 Who Have Visual Impairment or Blindness and Multiple Disabilities when future products and curricula are developed. The survey helped confirm what the greatest product needs are, and it identified many insightful professionals in the field who may be potential APH consultants and/or fields test reviewers. Once again, APH extends our appreciation to all who participated in this project.
References
American Printing House for the Blind. (n.d.). What is federal quota? Louisville, KY: Author. Retrieved from http://archive.aph.org/federal-quota/what-is-federal-quota
Pierce, T. (2001). Multiple disabilities survey results. Louisville, KY: American Printing House for the Blind. Retrieved from http://archive.aph.org/research/multiple-disabilities-survey-results/
U.S. Department of Education, Office of Special Education and Rehabilitative Services. (2006). Part II: Department of Education. 34 CFR Parts 300 and 301. Assistance to states for the education of children with disabilities and preschool grants for children with disabilities; final rule. Retrieved from the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) website.
U.S. Department of Education, Office of Special Education and Rehabilitative Services, & Office of Special Education Programs. (2011). 30th annual report to Congress on the implementation of the Individuals with Disabilities Education Act, 2008. Washington, D.C.: Author. Retrieved from https://files.eric.ed.gov/fulltext/ED557417.pdf
Appendix A
Federal Quota Product Eligibility Criteria
All products offered through the Federal Quota Program, whether manufactured totally or in part by external vendors or at APH, must meet the following criteria. They must be:
- specially developed or adapted educational materials designed to meet the instructional needs of blind and visually impaired students;Note: This includes accessories that add to the effective use of products approved for purchase through the Federal Quota Program and products used as parts of kits.
- commercially unavailable at the time of development;Note: If a similar product becomes commercially available during or after APH’s development of the product, criteria such as quality and cost will be used to determine whether APH continues development and/or sale of the product through the Federal Quota Program.
- manufactured totally or in part at APH, or manufactured by others to meet APH specifications;
- designed and targeted to be used by blind and visually impaired students working at less than college level or for service providers who work with blind and visually impaired students at less than college level; and
- available in the United States exclusively from APH.
Note: If APH partners with another company to develop a product, it could possibly be sold by that company in the United States as well.