by
Dawn Carlson, PhD, Nathaniel Ehrlich, PhD,
Betty Jo Berland, PhD, and Nell Bailey, MA
April 12, 2002
Background
The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), under its Technical Assistance Project, an activity funded by the National Institute on Disability and Rehabilitation Research (NIDRR) under the Assistive Technology Act of 1998, contracted with the University of Michigan, Survey Research Center, Division of Surveys and Technologies to conduct a nationally representative survey of the use and need of assistive technology and information technology (AT/IT) by individuals with disabilities. The purpose of this report is to give a brief overview and summary of the survey’s objectives, methods, and findings.
The Assistive Technology Act of 1998 (AT Act) was signed into law on November 13, 1998. The AT Act builds on its predecessor, the Technology-Related Assistance for Individuals with Disabilities Act of 1988 (Tech Act), and reaffirms the Federal role of promoting access to assistive technology (AT) devices and services for individuals with disabilities of all ages.
Although a great deal of progress has been made in the past 10 years toward providing assistive technology to individuals with disabilities, there is a dearth of information documenting the extent of the progress and identifying the remaining barriers that prevent people with disabilities from acquiring assistive technology.
Prior to the AT/IT survey, very little data existed on the use, need and satisfaction of AT by persons with disabilities. The primary source of information on AT use is the National Health Interview Survey. LaPlante, Hendershot and Moss (1992) found that in 1990 more than 13.1 million persons used AT. The same study also found that an additional 2.5 million persons needed AT; of these, about 60% could not pay for the needed devices. A more recent study by Russell, Hendershot, LeClere, Howie and Adler (1997) reported that in 1994, approximately 17 million people used AT. No data on need were presented but the study showed that use of AT had increased substantially over the previous decades.
In an effort to monitor the impact of the law on persons with disabilities, the RESNA Technical Assistance Project has supported the collection of data by state assistive technology projects regarding consumer experiences with AT from 1991 to 1997. However, RESNA’s data collection effort was not a longitudinal study nor did it represent the participation of the same group of states each year. A number of smaller surveys and studies on AT use have been conducted, but most of them dealt with specific aspects only, such as wheelchair use, or focused on select populations such as the elderly in nursing homes. As a result, it was felt that a national survey of persons with disabilities using or needing AT could fill these gaps in knowledge and produce much needed information about the role AT and IT play in the lives of persons with disabilities, and how they go about selecting appropriate assistive devices and technologies.
The overall objectives of the study were to
AT/IT Survey Design
The 2001 Survey of Persons with Disabilities was conducted over a nine-month period from March-December. A total of 1,414 individuals were interviewed, each of whom was screened in according to a screening instrument developed by NIDRR, RESNA, and the University of Michigan based on the disability questions in the 2000 Census and NHIS surveys. After it was established that a residence had been contacted, interviewers took a roster of all household members and selected one eligible respondent. If more than one household member was eligible, one was selected on a random basis. Proxy responses were allowed, as were interviews conducted over TTY equipment via state relay. The respondents were drawn from two sources: a targeted list of persons with disabilities [1,002] and random-digit dialing [412]. The overall response rate exceeded 90% for both samples.
The survey was conducted using a computer assisted telephone interview method that directed each respondent towards a series of questions about AT/IT use, need, and selection and acquisition behaviors pertaining to two or more of the following domains of daily living: home, community, school and/or work. While all respondents were asked the questions about AT/IT at home and in the community, only those respondents who worked and/or went to school were interviewed about AT/IT use and need in these domains.
The pattern of probing into a respondent’s experience with AT/IT use, need, selection and acquisition was assessed with the following questions:
Current Use
What kind of AT/IT devices do you use?
How did you learn about this device?
Where did you get the device?
How was the device paid for?
Were you satisfied with the device?
Did you receive help during the selection and purchase of the device from an agency?
Current Need
What kind of AT/IT device do you need?
How will you learn more about this device?
What if any agency or organization do you plan to contact for help?
If you do not plan to seek help from an agency, what are your reasons?
A series of personal knowledge and opinion questions followed by questions about social and demographic characteristics was given to all respondents after the probes had been completed. The sample characteristics can be summarized as follows: forty two percent of the respondents were male, and 58 percent were female. Whites accounted for over 81 percent of the respondents. About forty five percent went to or completed high school, 33 percent had some college, and 15 percent graduated from college and/or did post-graduate work. The median personal income fell into the $10,000 to $14,999 range, and median household income was reported to be in the range of $25,000 to $34,999. About 20 percent of the respondents were employed, and over half of the respondents were unable to work because of their disability.
Data and Limitations
Respondents were carefully screened with regard to any chronic illness, functional limitation, impairment, or disability that would make them likely users of AT and/or recipients of personal care services. Our RDD sample of 412 cases (with a 93 percent response rate) was selected from 2,556 household interviews before given an in-depth interview, and represented the population of persons with disabilities in the United States at that point in time at a rate of 16 percent. This estimate is slightly lower than the 2000 Census estimate of about 20 percent of adults, and the 21.5 percent prevalence estimate obtained from the 1994-95 National Health Interview Survey.
Preliminary findings (to be published) indicate that our sample contains a greater percentage of persons with moderate or severe disabilities, compared to the above mentioned surveys. Similarly, the targeted list sample included a relatively large number of wheelchair users and persons whose reported health condition also indicated more severe levels of disability. All of these persons were screened with the same instrument to ensure a certain degree on homogeneity. A series of split-half sample reliability tests was performed to test for differences in response patterns between the two samples. No statistically significant differences were detected, and the robustness of the sample was ensured.
By choosing the same disability assessment questions as the Census and the NHIS we also built in a design feature that enabled us to compare our findings with those from the other two major disability surveys and determine the validity of our findings. With these quality controls in mind, we are confident that the findings presented in this paper are valid and accurately represent the experiences of persons with disabilities who use or need AT, and how they went about obtaining and paying for it.
In the course of various detailed analyses we found that a number of items had very low frequency counts. Such events commonly occur in health and disability surveys. Low frequency items or responses are generally marked as "not reliable", and rules as to the size of the relative standard error indicate the magnitude below which an estimate is deemed "not reliable". At the time this paper was written, error analyses had not yet been completed, and a determination of the reliability of ratio estimates based on low frequency counts could not be made. We therefore caution the reader not to interpret such estimates as reliable. Whenever possible and meaningful, we grouped similar items into larger categories and based our interpretations on these larger estimates.
Findings
The first differentiation of respondents was a description of their current occupational status. We found that the modal response for all [52%] was that they are unable to work because of their disability; the next largest category was respondents working; fewer than ten percent are able to work but unemployed.
We asked each respondent to explain in detail what condition was responsible for her disability. We found osteoarthritis, hearing loss, the lingering effects of injury, back disorders, multiple sclerosis, diabetes and heart ailments to be the most often mentioned causes.
Respondents were asked about their need for and usage of assistive technology getting to school and work, in school or at work, in the home, and in the community. Of all respondents, 901 [64%] use some assistive technology. Usage at school and at work is 36%; usage at home is 49%, and usage in the community is 50%. Most of the assistive devices used were designed to enhance mobility: canes, crutches, walkers, scooters and wheelchairs. Hearing aids, oxygen tanks and other personal use devices were also among the most frequently used devices.
We asked respondents about the process of acquiring such technology - how they learned about it, whether they had help acquiring it, how it was paid for, whether they had attempted to get help and their success or failure in these attempts. The charts below provide a summary of their responses.
Most respondents learn about AT devices from their doctors and obtain them from medical or orthopedic supply houses.
More than a third of the respondents had their devices paid for by themselves or family members, and a like number paid for them with private insurance, Medicare and Medicaid.
Only about one in five respondents had help in the selection and purchase of their assistive technology. Most of those who had asked for help received it, but the prevailing sentiment was that the respondents did not feel the need to ask for help.
We asked respondents about their use of Information Technology [IT] as regards their need, ability and opportunity to use telephones and computers. We found virtually no difficulties encountered in using telephones, significantly more in the use of computers, but the majority of respondents were well served in both areas.
We asked respondents about access and accommodations in the buildings and living spaces they encounter in school, work, at home and out and about in the community. We found greater needs in the community and schools than at home, and the least need at work, most likely because working persons with disabilities are, by definition, less impaired than those unable to work because of their disability. We also learned that one in six respondents could be classified as homebound, having not left their home once in the two weeks preceding the survey.
The personal opinion questions we asked centered on information about AT and how to obtain it; the effect of AT on the respondent's lives; and how their views on how things have changed in the world over the past decade. The respondents asserted that they had received little information about assistive technology and less on how to acquire it; but those who had gotten information said that it was helpful.
Figures 6 and 7 substantiate the notion that AT has made many persons with disabilities more productive and more aware of their rights. We also found that over 24 percent of the respondents reported that AT had not substantially reduced their dependence on other people.
Overall, respondents felt that compared with ten years ago, conditions were much improved for them as persons with disabilities.
Open-ended questions were integrated throughout the questionnaire and provided much detail, both qualitative and quantitative. While our analysis of these has centered on the quantitative - the prevalence of predisposing conditions and the types of assistive technologies employed by the respondents, one qualitative result is worth noting. The population of persons with disabilities strongly rejects the perception of themselves as being in need, as victims. Rather, the quality of their responses shows considerable pride in their ability to live full and productive lives regardless of the severity of their impairment.
Summary and Conclusion
The findings presented in this paper showed that in the past year, 64 percent of persons with disabilities age 18 and over used some form of AT. This estimate is based on a prevalence rate of disability among adults in the United States of 16 percent. Put differently, 10 percent of adults in the United States or nearly 21 million people, not counting persons under age 18, used some type of assistive technology to help them with their daily tasks and activities.
Persons with disabilities and family or household members paid for AT out of pocket in about 40 percent of the cases; private health insurance, Medicare and Medicaid combined accounted for about an equal amount (38 percent) of AT related expenses. In 8 percent of the cases AT, mostly mobility devices, were obtained at no cost.
About 20% of the respondents received help in the selection and purchase of AT. Health care providers were reported to be the primary source of help and information (50%). The vast majority of "consumers" of AT who received help with the selection and purchase of a device was somewhat satisfied or very satisfied with the help they received (95%). Of those who sought help, 9% were not successful. Among the 70% of respondents who did not seek help, the main reason given was: "I don’t need help."
Needing help, or that one’s own perception of needing something could possibly show weakness, incapacity, or inability appears to be a powerful psychological barrier that may prevent some persons with disabilities from obtaining the "right" type of device or technology, or even keep them from getting something at all. We may safely assume that such cases are few, and that in most cases the device or technology is easy enough to acquire. However, in light of the fact that over half of the respondents (52%) participating in this survey reported receiving little or no information about AT, and six in ten respondents (62%) reported receiving little or no information about how to obtain AT, awareness of AT among persons with disabilities and how it might help them in their daily lives appears to be low. This low level of awareness, particularly of where to go when help is needed, is further indicated by the very low number (about 1 percent) of respondents who reported knowing about or receiving help from a state-based Tech Act agency. This leads us to conclude that more awareness campaigns and outreach activities are needed to educate persons with disabilities and their families and caregivers, as well as health care service providers about where and how to obtain AT-related assistance.