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State-wide planning for access to technology applications for individuals with disabilities.

Technology offers the potential to improve the quality of life for all who have access to it. This is especially true for people who have lost some functional ability due to disease or trauma. Unfortunately, access to technology is limited for many persons. Recognizing both the potential of this technology, as well as problems with access, new federal legislation, P.L. 100-407, has been enacted that encourages state level technology initiatives. This paper describes the state level planning activities in New York between 1987 and 1989, prior to the passage of P.L. 100-407, and provides an analysis of problems and successes with the process.

One of the greatest opportunities that the advancement of technology offers to people with disabilities is improved independence and an increased standard of living. Through the assistance of a variety of existing and newly emerging technologies, persons with disabilities are able to undertake tasks which had previously been beyond their means. Being able to perform these tasks opens opportunities for gainful employment and personal fulfillment. The existence of special technology, however, does not guarantee its availability to those who need it. " (New York State Governor's Task Force on Computing and Disabilities, 1987, p. iv)

"I..speak to people using a speech synthesizer.. The synthesizer and a s 11 personal computer were mounted on my wheelchair... The system has made all the difference. In fact I can communicate better now than before I lost my voice. (Hawking, 1988, p. vii-viii)

Introduction

Value of Technology

Technology has had a major impact on the quality of life for many persons with disabilities. Through technology many persons can work in jobs that would have been impossible just a decade ago. Students can attend school with much greater ease. However, not everyone who could use this technology has enjoyed its benefits. Access to this technology is often difficult. Many of the problems associated with access to technology can only be solved through coordination of activities among service providers, technology developers and retailers, third party payers, and consumers. With the passage of P.L. 100-407, the Technology-Related Assistance for Individuals with Disabilities Act of 1988, virtually every state will institute a planning process within the next few years, if one is not already in place. This paper will describe the process for planning technology access that has been used in New York, and will analyze both problems and successes with this process.

Background

Service Delivery Models

A major problem with access to technology is the lack of a clear service delivery model. This is understandable, as the introduction of these revolutionary tools has occurred just within the last decade, and there is a very large range of applications of this technology- across disability categories and across age groups. What has developed is a mix of models for technology service delivery- none without limitations. The most simple model could be called the "Consumer Purchase" model. The person with a disability, or a family member, hears about a device, purchases it, often from a catalog, and the device or software is put into use. This may be the least expensive model relative to initial purchase cost, but often it turns out to be the most expensive model. Purchases are made that do not work, are not appropriate, are not compatible with other equipment, or that require additional installation, service, or training that is often not available.

A second model is to provide technology through well established rehabilitation facilities. Following the medical model, these rehabilitation programs prescribe technology in much the same way medicine is prescribed. Compliance rates for low technology assistive devices prescribed in hospitals are typically low, and usage or compliance rates may also be low for more high technology solutions prescribed outside of the home and community environment. A second problem with this model is that rehabilitation programs focus on a relatively short period of a person's life - that period of 3 months to a year following a disabling injury or disease. Many persons with disabilities do not maintain contact with rehabilitation centers, or may never have had contact, and may not benefit from services they could offer. A third limitation is that most of these facilities focus on physical disabilities, although a system of service, primarily from the private sector, is developing in some areas such as for persons with head injury.

A third model suggests the use of independent living centers which can serve as product demonstration centers, offer evaluation and prescription, and perhaps most importantly, offer peer counseling. These centers, however, are rarely funded at levels that permit demonstration of a wide range of technology, or have staff expertise that covers the spectrum of technology. These centers are not well known- according to a Harris survey, only 25 percent of persons with disabilities have heard of independent living centers (Taylor, Kagay, & Leichenko, 1986).

A fourth model employs educational centers to house the expertise in technology. Public and private schools and United Cerebral Palsy Association programs offer a mix of services, but are typically limited to younger age groups.

Integration of Services

The concept of vertical integration of services is closely related to service delivery models.

"Perhaps one of the most difficult service delivery activities is the domain of integrating services. . . . When students or clients move into a system which has a technology expert, they have access to these benefits, but when they move out of that system, they quickly lose the benefits of the technology expert (Smith, 1987).

Vertical integration must occur on two levels. The first is across geographical regions: facilities, agencies, and schools, as a person physically moves, even within a city or state. The second is across the life of the individual, as a person passes through a continuum of educational systems, and other service systems. One of the biggest problem areas at this time is the integration of services to students in the educational system as they move to service systems for young adults- services relating to employment of persons with disabilities.

Overview of Past Work in New York

In 1987 a Task Force on Technology and Disabilities was established in New York to make recommendations to the Governor on issues related to technology. The culmination of the work of the Task Force was a major report which included recommendations for specific initiatives covering seven major areas related to assistive technology: (1) information on, and promotion of assistive technology; (2) the service system; (3) funding; (4) employment; (5) transportation; (6) professional training; and (7) initiatives for industry. The recommendations are summarized in Table 1. (TABULAR DATA OMITTED)

Picking up on the work of the Governor's Task Force, the author responded to, and received funding under, a United States Department of Education request for proposals, under the priority to:

"...improve cooperative interagency activities among State and local educational agencies having potential to provide state-wide or interstate access to and use of technology to meet the early intervention, educational, vocational, and transitional needs of individuals with handicaps " (U.S. Department of Education, 1988).

The funding has been used to establish a new state-wide planning system on technology and disability. This new system was initiated in October 1988 with three key components: (1) an Interagency Planning Council on Technology and Disabilities, (2) a series of grass roots meetings held around the State seeking input from consumers and direct service providers, and (3) an information dissemination component.

Aspects of Current Planning in New York

Planning Council

The New York State Interagency Planning Council on Technology and Disabilities has 32 members, with representatives from state and private agencies, technology companies, the state legislature, independent living centers, and consumers. Sixteen agency heads were asked to appoint representatives from major state agencies serving individuals with disabilities or related areas (such as transportation).

Grass Roots Meetings

Consumer and direct service provider participation in the planning process was considered essential to the success of the project. Four meetings a year are held across New York. The format includes a morning session to review the planning work in process, and provides an overview of technology. In late morning participants develop written statements regarding their experience, problems, and suggestions for solutions in relation to technology. In the afternoon the participants deliver their statements and answer questions from other participants, and hear related comments from other participants. These sessions are videotaped. The statements, along with an edited down version of the videotape, are shared with the Planning Council and used in setting priorities for action.

Information Dissemination

Sharing information on technology, and on the planning process occurs in the grass roots meetings but also in a Project Newsletter, published three times a year. A Technology Information Network (TIN) has been established. This has three components, all driven by a continually updated database: (1) the Services in Technology For Persons with Disabilities: A Directory for New York State (Mann, 1989), (2) an 800 number call in system where a person can ask a question on where to go for technology services, and (3) an 800 number computer electronic bulletin board.

Problems, issues and Recommendations

While New York has been active in attempting to address issues related to technology access on a state-wide, interagency basis, there have been gaps in the process. Almost a full year elapsed between the ending of the work of the Governor's Task Force and the establishment of the Planning Council. With the passage of P.L. 100-407 and the support it will provide, this problem of stop-and-go should be eliminated. New York was in the fortunate position of having successfully competed for a federal grant to continue the planning process. Other states should recognize the importance of initial efforts similar to New York's Governor's Task Force, funded by the state, to develop a line of work that the Federal government will support.

Planning Council

While the establishment of the Planning Council has been largely successful, there have been problems that deserve mention and analysis, so that other states considering adoption of this model might avoid them. We identified four problem areas:

(1) Appointment of the right people to the Planning Council is critical to the success of the planning process. Defining "right" is difficult enough. We attempted to include appointment of representatives from: all major state agencies, independent living centers, United Cerebral Palsy Association, technology corporations, New York State legislative committees on the disabled, a center providing technology services, and consumers.

Most of our appointments were appropriate. However there were individuals on the Planning Council not well informed about the role for technology in their agency- or who feel they are too busy to attend meetings or follow through on assignments. We have addressed this problem with a combination of encouragement and information sharing. Since the Planning Council is "Interagency," there is no line authority for directing attendance or participation. Most members are committed to the goal of increasing access to technology, but level of commitment varies. In developing a Planning Council in other states, it might be useful to identify individuals within agencies before seeking appointments, so that suggestins to the agency head could come from the Planning Council chair.

Representatives who are "right" by virtue of their expertise and dedication must also be prepared to facilitate the planning process. For example, we spent an excessive amount of time during one meeting debating terminology, primarily because a couple of members were still unclear about the purpose of the planning process. They had not done their reading homework, and were responding from their own very focused frame of reference. It is important to include members who are good team planners, and who will not impede group process.

(2) Size of the Planning Council will impact on its manner of functioning. Our Planning Council has 32 members. While it is important to include all related agencies in the process, this is too large a group for open discussions centered around planning. While some introductory and summary functions can be handled in a large group setting, we restructured our meeting to include breakout planning sessions.

We also found that expertise and active assistance for addressing some problems was required from individuals not on the Planning Council. We set up "Task Groups" to handle specific areas of focus. For states beginning the planning process, we would recommend the use of this task group system.

(3) Politics and "turf" issues are real but can be resolved through the common goals of the project. In a state as large as New York, one might expect a rather high level of politics and "turf protection." Instead, we have found a very high level of commitment to the interagency concept. We have had difficulty in meeting some of our objectives, but we are working these out in a cooperative environment.

(4) Issues of accommodation must be addressed. While this might seem like an easy issue for people involved with technology, problems arose. We mention them here so that others might avoid them. First, the Planning Council includes members with hearing impairments. The system provided to accommodate these members at our first meeting required passing a microphone around the room. It is almost impossible to lead a meeting when you do not have control over who is to speak. At this meeting, the chair finally began walking the microphone around the meeting table to maintain control of the flow of discussions. Remote systems are available that remove this problem, and we are now using such a system. Similar problems arose relative to members who are blind, and members with mobility impairments. We learned quickly that hotel sales people have a different understanding of the term accessible," from the people who require accessible facilities. On-site inspections must be conducted in planning meetings. Use of local resources, such as personnel from independent living centers, has proven helpful with these on-site inspections.

Grass Roots Meetings

Certain expenses associated with the Grass Roots Meetings/Workshops were not covered by the project budget: cost of meeting room, lunch, and travel. A $25 fee was charged to cover these costs. Many consumers had difficulty with this fee, so it was either waived altogether or reduced to the cost of lunch. Ideally these meetings should be free. Practically that is not possible.

While the promotional material stated that the purpose of the workshop was to "seek consumer and service provider advice for setting policy on access to technology resources in New York" a few people who signed up for the workshops were expecting product demonstrations. We do include a video in the morning session that provides an overview of existing technology. A participant in our first meeting felt it would be helpful to know more about what would be available in the future- a big order for a video. Fortunately, our Apple representative was able to supply us with a short video produced by Apple that provided a "view" of the future assistive technology.

Future

The work that has been carried on within this project will be continued with funding from P.L. 100-407, under the direction of the New York State Office of the Advocate for the Disabled. This is an agency that represents all age groups, and all disability groups and can serve as a major force in keeping alive the interagency efforts that are so essential to a coordinated system of service delivery.

References

Federal Register, March 3, 1988, Part VII, Department of Education, Office of Special Education and Rehabilitative Services, 34 CFR Part 333, Technology, Educational Media, and Materials for the Handicapped Program; Final Regulations and Notice of Final Annual Funding Priorities. p 6955.

Hawking, S.W. (1988) A Brief History of Time. New York: Bantam Books.

New York State Governor's Task Force on Computing and Disabilities, (1987) Final Report.

Smith, R.O. (1987) Service delivery and related issues at the Trace Research and Development Center, Trace Center Paper, Madison, WI.

Taylor, H., Kagay, M., & Leichenko S. (1986) The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream, A Nationwide Survey of 1000 Disabled People, New York: Louis Harris and Associates.

Vanderheiden, G.C. (1987) Issues in planning a state-wide technology service delivery program for special education, Trace Center Paper, Madison, WI.
Received: September 1989
Revised: June 1990
Accepted: June 1990
COPYRIGHT 1991 National Rehabilitation Association
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1991, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

Article Details
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Author:Mann, William C.
Publication:The Journal of Rehabilitation
Date:Jan 1, 1991
Words:2699
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