Report of the APH Adult 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 Adult Multiple Disabilities Focus Group met in June 2011. This was the first time that APH hosted a group solely dedicated to adults who have vision loss in addition to multiple disabilities. To combine efforts, Tristan Pierce, APH Multiple Disabilities Project Leader, and Terrie Terlau, Ph.D., APH Adult Life Project Leader, co-facilitated discussions for the 2-day event. Director of Research, Ralph Bartley, Ph.D., welcomed the group and participated in the discussions. The visiting participants took several days out of their busy schedules to assist us with this project. They identified populations, definitions, and product needs. The group demonstrated through discussions that they—professionals who work with adults who have visual and multiple impairments—need better approaches to new knowledge, new technologies, new systems of services that emphasize a team approach, and partnerships with persons who have visual and multiple impairments. By the end of their time at APH, the group designed and constructed an electronic survey on the usefulness of product ideas; this survey was titled “Product Needs Survey for Adults Who Have Visual Impairment or Blindness and Multiple Disabilities.” Upon returning to their home states, they recruited colleagues to participate in the pilot survey. After completion of the pilot and implementation of suggested revisions, the group continued to reach out to professionals in the field to get as many survey respondents as possible.

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

APH is especially appreciative of the 88 insightful and enthusiastic survey responses from the field.

Purpose

The purpose of this project was to identify products, curricula, and research that professionals believe crucial to the continuing education and life of adults who have visual impairment (VI) and multiple disabilities (MD). APH is dedicated to helping all individuals live independent, satisfying, and productive lives.

Overview of Population

Who exactly is the VI/MD adult population? In 2004, the National Center for Policy Research (CPR) for Women & Families published a study in which they estimated that one million legally blind adults live in the United States (Zuckerman, 2004). CPR defined legal blindness as corrected eyesight no better than 20/200 for either eye or a restricted field of vision less than 20 degrees wide. The CPR study (779 respondents) revealed that 94% cited an average of 3.3 health conditions in addition to their blindness. Many reported that they have other disabilities: 20% experience hearing difficulties, even with a hearing aid; 20% also report problems with balance; 5% have a learning disability; 2% have an intellectual disability; and 1% was born with cerebral palsy. Approximately one in four (29%) reported one or more emotional or mental health problems (Zuckerman).

Rein et al. (2006) estimated in 2004 that the United States’ annual financial burden of major adult visual disorders for adults aged 40 years and older was $35.4 billion ($16.2 billion in direct medical costs, $11.1 billion in other direct costs, and $8 billion in productivity losses) and that the annual governmental budgetary impact was $13.7 billion. This figure does not consider the cost of additional disabilities in tandem with a visual impairment.

The Committee on a National Agenda for the Prevention of Disabilities: Division of Health Promotion and Disease Prevention and the Institute of Medicine (1991) discovered that orthopedic impairments followed by arthritis, heart disease, and then visual impairments are the leading main causes of activity limitation for all adult age groups. Mental disorders, intellectual disability, diabetes, and hearing impairments were identified in the top 15 main causes of activity limitation. Most causes for activity limitation are conditions that may have had different underlying causes earlier in life. Blindness, for example, could be a congenital condition or the result of a developmental problem; it could also be the result of an injury or disease such as diabetes. Diabetes is recognized as a medical condition that causes physical disabilities (e.g., blindness, wheelchair use). Respondents of the APH survey often included the word “diabetes” within the comment sections of given categories. It is important to remember that illness itself is not a disability (U.S. Department of Health and Human Services, 2005).

Individuals with visual impairments experience high levels of unemployment (Wolffe & Spungin, 2002; Wolffe & Candela, 2002). Wolffe and Spungin (2002) identified poverty; discrimination; lack of education, resources, and necessary technologies; employers’ lack of awareness; and inadequate legislative support as barriers to gainful employment for persons with visual impairments. In addition, the Committee on a National Agenda for the Prevention of Disabilities and the Institute of Medicine (1991) reported that 9 million people have such profound functional limitations that they cannot work or attend school. Advancements in adaptive technologies does help, but many persons with visual and multiple impairments often lack the training to use technology and/or the funds to purchase electronic devices. Respondents of the APH survey reiterated this in the comments sections of the survey. Further, research and field reports consistently identify literacy as a key factor to ensure that 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 & Koenig, 1997).

Participants in the APH Adult Multiple Disabilities Focus Group categorized their clients in three distinct categories: adults who have lived their lives with visual and multiple impairments, adults with visual impairment who find that as they age they gradually develop hearing loss and other disabling conditions, and adults who suffer a traumatic episode that results in visual and multiple impairments. Adults from each category share common needs as well as individual needs to help them live satisfying and productive lives with as much independence as possible.

Method

Participants

Professionals who work with adults who have vision loss and additional disabilities participated in the focus group as well as the product needs survey. The term “adults” is defined as high school students who are ready to transition to higher education, a job, or a day program; individuals who are age 18-64 who work, attend a day program, or stay at home; and seniors 65 years and older who experience age-related or injury-related impairments. Examples of an adult are a teen with cerebral palsy and low vision, a 35-year-old adult with intellectual disability and deafblindness, and a senior wheelchair user with macular degeneration and stroke-related motor impairment.

The focus group selected several colleagues to complete the pilot survey and 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, the Blinded Veterans Association, and various state and local agencies who serve the adult blind population. Individuals forwarded the survey link to Internet member listservs.

The Instrument

The 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 have blindness or visual impairment with additional disabilities. The team identified 39 product/curriculum ideas and highlighted which ideas the focus group considered to be most important. The 39 ideas were categorized into 15 areas and developed into a needs survey. The 15 categories are Adaptive Technologies, Advocacy/Self-Determination, Assessment, Communication, Community Access, Employment/Occupation, Healthy Lifestyles, Independent Living, Information Technologies, Medication Management, Money Management, Orientation and Mobility, Recreation, Safety, and Social Skills. 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 39 suggested. This subtle redundancy helped ensure that each survey was completed accurately. Respondents were asked to rate the 39 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

Eighty-eight professionals submitted surveys from 23 states; Ohio (14%) and Florida (13%) submitted the most. Three respondents submitted their surveys from outside the United States.

The respondents are highly educated; 92% have a college or graduate degree. The majority (73%) are female. Many years of professional experience are represented in the survey; 53% have worked with VI/MD adults for more than 10 years. Respondents said that the majority of them (53%) work for a private non-profit employer and 30% for a state or federal employer. Schools employ 15%, and 13% work for residential agencies. Only 6% work in day programs. 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 campus. See Table 1: Demographic Characteristics of Respondents.

Table 1: Demographic Characteristics of Respondents

Variable (N=88)* Percentages
Education
High school degree 2 2%
Associate degree 3 3%
College degree 14 16%
Graduate degree 67 76%
Years working with VI/MD adults
Less than 6 years 24 27%
6-10 years 15 17%
11-20 years 22 25%
21-30 years 12 14%
More than 30 years 14 16%
Employer
State/Federal 30 35%
Private non-profit 45 53%
Residential 11 13%
Day Program 5 6%
Medical Center 0 0%
School 13 15%
Other 3 4%

* Because some respondents did not answer every question, and because some respondents answered questions with multiple responses, N does not always equal 88.

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. Single answers submitted under the “Other” category included a wide range from music therapist and library technical assistant to a licensed practical nurse and parent.

Table 2: Certifications, Licenses, and Other Credentials

Title No.
Teacher of Persons with Visual Impairment 32
Other 22
Orientation and Mobility Specialist 18
Directors/Supervisors 13
Vision Rehabilitation Teacher/Counselor/Therapist/Specialist 13
Professional Counselor 11
Agency Trained 11
Rehabilitation Instructor/Teacher/Counselor 7
Certified Vision Rehabilitation Therapist 7
Low Vision Specialist 4
Managers 4
Occupational Therapist 3
Access Technology Specialist 2
Deafblind Specialist 2
Direct Support Staff 2
Social Worker 2

On average, 60% of clients served have visual impairment/blindness with an additional disability. This average was determined by 78 responses. Several responses were eliminated as they were not submitted with a quantitative value (e.g., responses such as “many” and “not sure”).

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 Respondent 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
59% Talking watch with variable volume and good sound quality for persons with deafblindness
57% Affordable and portable CCTV
48% Talking glucose meter with louder and variable volume
44% Insulin gauge with raised numbers
44% Digital recorder player compatible with new talking book machines
44% Software to adapt calendars, address books, etc., by font point size, and/or line spacing
43% Talking scale with louder, variable volume and pitch for persons with deafblindness
41% Audible tactile schedule prompter for important elements of daily routine, especially for adults with traumatic brain injury and memory impairment
40% Device to detect obstacles (including drop-offs) to mount on a wheelchair
39% Moderately priced vibrating watch
38% Functional, community-based, transdisciplinary assessment for adults who are blind or deafblind with intellectual disabilities
38% Improved electric can opener for use with one hand
35% High contrast (black on white or yellow) timer with a vibrating feature that is worn around the neck
35% Device to stabilize vegetables while cutting for persons with limited motor skills or who have use of only one arm
34% Atomic clock with temperature and calendar that has verbal prompts for variable volume loud enough for persons with deafblindness
34% Device to access information from radio/television with auditory, braille, and type enlargement options for persons with deafblindness
34% Louder and variable volume blood pressure cuff
33% High interest/basic English braille materials for adults who have blindness and who use English as a second language, including American Sign Language
33% ADA advocacy training materials on individual rights and responsibilities
32% Simple photos to represent cooking routines with a hook/loop material or magnetic strip for mounting in order
32% Intellectual disabilities vocational manual adapted for the visually impaired population
31% Vocabulary series for adults related to recipes words, medical words, banking words, etc.
31% Manual/guidebook on nonverbal communication
30% Auditory labeler that requires minimal pressure for one arm use
30% Financial record-keeping software
30% Descriptive video games (i.e., Nintendo Wii)
30% Basic functional budgeting curriculum for recreation and personal shopping
27% Video that shows three typical adult work days: supported employment, extended employment, competitive employment
27% Jumbo Braille Dymo® tape labeler
26% Medical record-keeping software
25% Video that presents a typical day program and community activity for adults with severe multiple disabilities and visual impairment/blindness, told from the parent/family perspective
25% Tactile symbols that represent typical group home chores
25% An adjustable sized cover for drinking cups
25% Floor guide to assist with directionality for bowling, archery, darts, etc.
24% Software to load and categorize communication photos
24% Adaptive device for cassette to digitized books and for digital to cassettes
23% Graphic relief map depicting room layout on a made-to-order basis
19% Collapsible rail for entering and exiting vans
16% Quiver-like item to store a support cane while using a walker

Respondents had the opportunity to list three products from the survey that they feel are most needed. See Table 4: Top Three Product Needs, which shows the number of times the top three choices were identified. The top product need, the affordable and portable CCTV player, was listed twice as often as the second most identified product need. There is a four-way tie for third place.

Table 4: Top Three Product Needs

Points Product need
14 Affordable and portable CCTV
6 Audible tactile schedule prompter for important elements of daily routine, especially for adults with traumatic brain injury and memory impairment
5 ADA advocacy training materials on individual rights and responsibilities
5 Video that shows three typical adult work days: supported employment, extended employment, competitive employment
5 Device to access information from radio/television with auditory, braille, and type enlargement options for persons with deafblindness
5 Talking glucose meter with louder and variable volume

When Table 3 and Table 4 are compared, there are three products that are identified on both lists. See Table 5: Product Needs—Most Valuable Compared to Greatest Need.

Table 5: Product Needs—Most Valuable Compared to Greatest Need

Percentage Points Product needs
57% 14 Affordable and portable CCTV
41% 6 Audible tactile schedule prompter for important elements of daily routine, especially for adults with traumatic brain injury and memory impairment
48% 5 Talking glucose meter with louder and variable volume

Respondents had an 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. 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.

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 by numerous respondents: affordable (repeated 11 times), GPS (6 times), diabetes (4 times), deafblind (4 times), jumbo (3 times), and iPad (3 times). This is a product needs survey and report, so comments that indicate the need for services were eliminated (e.g., support groups in local areas, public transit information at train and bus stops). Respondents’ product ideas and general comments are presented here, per category.

Adaptive Technologies

Advocacy/Self-Determination

Assessment

Communication

Community Access

Employment/Occupation

Healthy Lifestyles

Independent Living

Information Technologies

Medication Management

Money Management

Orientation and Mobility

Recreation

Safety

Social Skills

Conclusion

Limitations

APH is recognized as a leading creator, manufacturer, and distributor of educational and daily living products for children. APH has offered adult life products for many years. The survey results show that APH may not be recognized as a product source for adults who have visual and multiple impairments. This may have caused potential respondents to disregard the survey when it was sent to them. In our definition of “adults,” we included young adults (high school students transitioning to work, day programs, or higher education). Perhaps potential respondents who work with this transitioning population did not think the survey applied to them because their clients are still in high school. APH conducted two surveys simultaneously: adult and birth to grade 12. The birth to grade 12 survey had 279 respondents; the adult survey had 88. Does the disproportion between the two numbers represent the variance in the number of people within the two populations or the number of professionals serving each population? Does the disproportion between the two numbers represent that APH is known as a manufacturer of children’s products but not so much for adults, particularly those with multiple disabilities?

Recommendations

Several recommendations can be drawn from this project. Professionals whose clients are adults who have visual and multiple impairments are concerned with the cost of technology products. They agree that they need technology products, but their clients cannot afford them. Affordability is paramount in everyone’s mind. There is demand for an affordable and portable CCTV. There are many portable CCTVs on the commercial market, some under $200.00. APH develops products when there is no other product available to meet a need. Are there specific, needed features that are not available on the current offerings of portable CCTVs? APH needs to conduct a product-specific survey designed to identify what distinct features are needed on an affordable and portable CCTV.

Like the general population, the VI/MD adult population is concerned with age-related disabilities. Not only is variable volume in demand for health-related products, but also a way for information to be disseminated tactually. Bluetooth® technology included in everyday devices (e.g., glucose meters, talking scales, etc.) may allow a braille reader who has hearing impairment to use a refreshable braille display to obtain the needed information.

To design and manufacture an audible tactile schedule prompter for important elements of daily routine, APH will need to conduct a product-specific survey to identify needed features and consult with experts (e.g., electronics, tactile, hearing) to determine the feasibility of the product.

APH will refer to the results of the Product Needs Survey for Adults 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

Committee on a National Agenda for the Prevention of Disabilities: Division of Health Promotion and Disease Prevention & Institute of Medicine (1991). (A. M Pope & A. R. Tarlov, Eds.). Disability in America: Toward a national agenda for prevention. Washington, DC: National Academy Press.

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

Rein, D. B., Zhang, P., Wirth, K. E., Lee, P. P., Hoerger, T. J., McCall, N., . . . Saaddine, J. (2006). The economic burden of major adult visual disorders in the United States. Archives of Ophthalmology, 124, 1754-1760.

U.S. Department of Health and Human Services. (2005). The Surgeon General’s call to action to improve the health and wellness of persons with disabilities. U.S. Department of Health and Human Services, Office of the Surgeon General. Available from http://www.surgeongeneral.gov/library/disabilities/calltoaction/calltoaction.pdf

Wolffe, K. E., & Candela, A. R. (2002). A qualitative analysis of employers’ experiences with visually impaired workers. Journal of Visual Impairment & Blindness, 96, 622-634.

Wolffe, K. E., & Spungin, S. J. (2002). A glance at worldwide employment of people with visual impairments. Journal of Visual Impairment & Blindness, 96, 245-253.

Zuckerman, D. M. (2004). Blind adults in America: Their lives and challenges. Washington, DC: National Center for Policy Research for Women & Families. Available from http://www.center4research.org/wp/wp-content/uploads/2010/05/blind02041.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:

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