2003 Conference Proceedings

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COMMUNITY RESEARCH FOR ASSISTIVE TECHNOLOGY (CR4AT): SUMMARY OF PARTICIPITORY ACTION RESEARCH

Presenters
Patricia Yeager
CA Foundation for Independent Living Centers
660 J. Street, Suite 270
Sacramento, CA 95814-2495
Phone: 916-325-1690
Fax: 916-325-1699
Email: py@cfilc.org

Tanis Doe, Ph.D.
CA Foundation for Independent Living Centers
660 J. Street, Suite 270
Sacramento, CA 95814
Phone: 916-325-1690
Email: tdoe@uvic.ca

Eleanor Higgins
The Frostig Center
Sierra Madre, CA

CFILC in collaboration with CSUN has begun a five-year research project on AT using the ILCs in California as community researchers. This past fall focus groups were conducted with a wide cross-section of people with disabilities to learn more about the effectiveness of AT. Employment, Health and Independent Living were three of the target subjects but we also looked at how Assistive Technology supports improved function and access. The presentation will be a chance to discuss the outcome of the focus groups and develop strategies to remove remaining barriers.

Impact on Users

In a survey conducted by the National Council on Disability, adults of all ages were asked to assess the impact of AT on their lives. They rated the impact on a scale from 1 to 10, with 10 being high. When asked to rate the quality of their life without AT, the mean was 3.0. But, when rating quality of life with AT, the rating soared to 8.4 (National Council on Disability, 1993). However, the impact of AT depends, in large part, on the appropriateness of the AT device and the user's overall success with the equipment. Since appropriateness is extremely individualistic, assessment is a key component. Factors to consider when determining the appropriateness of technology include, affordability, availability, compatibility, portability, usability and trainability (Lueck, Dote-Kwan, Senge, & Clarke, 2001). Will the technology allow a user to perform desired functional tasks? Will the device be compatible with the users social, emotional, and skill level? Will it be compatible with existing technology? Assistive technology "can permit individuals to be environmentally, vocationally, and emotionally empowered" (Fiedler, 1996). In addition to matching users with appropriate tools, the type and degree of disability influence the impact of AT on a user. Individuals with degenerative diseases report less favorable impact than users with spinal cord or brain injuries (http://www.csun.edu/cod/conf2001/proceedings/0100jutai.htm). However, other research suggests that even among individuals with a progressive neuromuscular condition, the perceived psychosocial impact of AT for activities of daily living is positive and prospective AT users have realistic expectations (Jutai, Rigby, Ryan & Stickel, 2001).

Impact on Families / Caregivers

"Assistive technology devices can have a dramatic impact on family routines and relationships in both positive and negative ways" (Parette & Angelo, 1996). AT may increase the independence and functioning of an individual with disabilities, while at the same time initially increasing the demands of family members and caregivers. Caregivers may be responsible for ensuring the functioning and efficiency of the new assistive technology (Zagler & Panek, 1999) and may need to take on new roles as teachers or trainers. A great deal of research pertaining to family and caregivers of AT users is focused on children and their parents.

"Although assistive technologies may relieve families of some worries about the recipient child and of burdens in the child's care, they also may generate unique stresses of their own. Assistive technology devices may require additions to family routines (e.g., daily battery charging or cleaning), restrictions of family activities (e.g., hindrance on travel due to size/portability problems of an electric wheelchair), and/or modifications to the home environment (e.g., setting aside "protected" space for a video enlarger system...Technology demands placed on primary caregivers may contribute to a reduction of energy available for other important family functions" (Parette & Brotherson, 1996).

Mann (2001) examined the potential of assistive technology to ease the burden of caregivers and concludes, that "Any device that increases the level of independence for a person will at the same time decrease the amount of assistance required from a care provider" (Mann, 2001). Studies have demonstrated that there is an increase in independence and decrease in cost associated with the use of AT (Mann et al., 1990, Cummings et al., 1990, Close et al., 1999). Both high tech (mechanical ventilation devices) and low-tech (grab bars) devices have been demonstrated to relieve use of care providers (Mann, 2001). Associated with this is the level of expertise and motivation of caregivers responsible for the implementation and function of an assistive device (Zagler & Panek, 1999). Another interrelated factor is the influence of culture on individuals with disabilities and their caregivers. How family members, caregivers, and/or communities view disability, the role each plays in the life of a person with a disability and the attitudes toward technology all influence the impact of AT.

Barriers Inhibiting Access to AT

Information/Marketing

How do individuals become informed consumers of assistive technology given that, "There is no Consumer Reports for assistive devices?" (Bryant, 1994) Although there is no single source of information individuals can rely upon, there are information clearinghouses, computer programs, and consumer-oriented bulletin boards that do provide some of the information needed to make an informed choice (Bryant, 1994). One resource available to assist individuals preparing to purchase an assistive device is ABLEDATA. Funded by NIDRR, this database contains information on a wide range of more than 19,000 products and can be accessed on-line (http://www.abledata.com/database.htm), by phone (1-800-227-0216), or using a CD-ROM (CO-NET). This program provides information about specific devices and provides pictures and sound samples. If the user does not know the particular name or vendor of a device, the Adaptive Device Locator System (Academic Software) searches according to functions that individuals need to perform. Other options include the national Rehabilitation Information Center, Project LINK (1-800-628-2281), or an Alliance for Technology Access Center.

Who accesses these services? ATA (1999) reports that African Americans with disabilities in their study, by and large, learned about new assistive technology through the mainstream media and family and friends. Many minority and/ or low -income individuals lack connections with the "disability community" and therefore lack current and adequate information on the wide array of AT devices available. Of California's 6.6 million people with disabilities, a disproportionate number are low-income minorities. Native Americans have the highest rates of disability, with Caucasian, African American, and Hispanic rates in the intermediate range. Disability rates are lowest among Asian-Americans (McNeil, 1997). However, factors such as age, family structure and income level obscure interactions with race /ethnicity (Fujiura, Yamaki, & Czechowicz, 1998).

Retention / Abandonment of AT

Many psychosocial factors impact the use or nonuse of AT, including personality, response to disability and the environment or social milieu in which technology is used (Krefting & Krefting, 1991). Several factors have been identified as contributing to AT abandonment, including lengthy wait times (Bhatt, Kohli, Melvin, & Maiman, 1987), improved physical function, replacement by alternative devices (Garber & Gregorio, 1990), level of training and misalignment with individuals goals (Beigel, 2000). The latter, failing to take into consideration a user's ideas and desires for the device, is a primary reason for abandonment (Scherer, 1993). Some expensive devices (orthoses) are retained more often, perhaps due to the research and time involved in selecting and fitting the devices (Fiedler, 1996). Products that are universally designed are also more attractive and may decrease abandonment as they are free from the stigma often associated with disability (Fozard, Rietsema, Bouma, & Graafmans, 2000). Users should be involved in all phases from needs assessment through procuring the device. Discussions about needs and technology preferences should include factors such as personality and prognosis of user, type of disability, availability of device, financial resources, training and support, and physical, sensory and cognitive factors.

References:

Alliance for Technology Access. (1999). Assistive Technology connections: A summary of meeting the needs of Californians with Disabilities.

Beigel, A. (2000). Assistive technology assessment: More than the device. Intervention in School & Clinic, 35(4), 237-244.

Bhatt, K., Kohli, A., Melvin, J.L., & Maiman, D.J. (1987). Equipment needs and functional use in SCI patients. American Spinal Injury Association Abstracts Digest, 294-295.

Bryant, L. (1994). Resources on assistive technology. Accent on Living, 39(1), 38-43.

Fiedler, I. (1996). Assistive devices: Empowerment issues. American Rehabilitation, 22(4), 26-30.

Fozard, J. Rietsema, J, Rouma, H., & Graafmans, J. (2000). Gerontechnology: Creating enabling environments for the challenges and opportunities of aging. Educational Gerontology, 26(4), 331-345.

Fujiura, G., Yamaki, K. & Czechowicz, S. (1998). Disability among ethnic and racial minorities in the United States. Journal of Disability Policy Studies, 9(2), 111-130.

Garber, S.L., & Gregorio, T.L. (1990). Upper extremity assistive devices: Assessment of use by spinal cord-injured patients with quadriplegia. American Journal of Occupational Therapy, 44(2), 12-131.

Jutai, J., Rigby, P., Ryan, S., & Stickel, S. (2001). Psychosocial impact of electronic aids to daily living. Proceedings of the Rehabilitation Engineering and Assistive Technology Society of North America, R. Simpson (Ed.), Arlington, VA: RESNA Press, 248-250.

Krefting, L.H., & Krefting, D. V. (1991). Cultural influences on performance. In C. Christiansen & C. Baum (Eds.), Occupational Therapy. Thoroughfare, NJ: Slack.

Lueck, A., Dote-Kwan, J., Senge, J., & Clarke, L. (2001). Selecting assistive technology for greater independence. Re: View, 33(1), 21-34.

Mann, W. C. (2001). The potential of technology to ease the care provider's burden. Generations, 25(1), 44-49.

McNeil, J. M. (1997). Americans with Disabilities. Current Population Reports. Washington, DC: U.S. Department of Commerce.

National Council on Disability. (1993). Sutdy on the Financing of Assistive Technology Devices and Services for Individuals with Disabilities. Washington, D.C.

Parette, H.P., & Angelo, D.H. (1996). Augmentative and alternative communication impact on families: Trends and future directions. The Journal of Special Education, 30, 77-98.

Parette, J.H., & Brotherson, M. J. (1996). Family-centered assistive technology assessment. Intervention in School & Clinic, 32(2), 104-113.

Scherer, M. J. (1993). Living in a state of stuck: How technology impacts the lives of people with disabilities. Cambridge, MA: Brookline.

Zagler, W. L. & Panek, P. (1999). Assisting the facilitators - interface design and telematic support for IT-based assistive technology. Technology & Disability, 10(2), 129-137.


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