Chapter One
Creating a Vision Why Do I Need a Plan?
Lois Symington, Ph.D., executive director of the East Tennessee Technology Access Center, Knoxville, Tennessee
The Big Picture
Some say that the one constant in the twenty-first century is change. That is certainly true when we contemplate the role of technology and the impact of disability in our lives. In the face of constant and inevitable change, we quickly realize that one way of coping is to create a vision of what we want to accomplish. A personal vision can serve as a sort of map or guide. This chapter will help you begin developing a vision for acquiring and using the technology that is suitable for you.
Begin by thinking about your personal goals and the ways that technology can help you reach those goals. As you do, keep in mind the constant change with which you'll be faced. As we reach different phases or ages in our lives, our needs change as a natural part of growing up and growing older. Some types of disabilities cause fluctuating changes in mobility, hearing, vision, and cognition. Technology also changes daily, and we are constantly bombarded with information about the newest and latest gadget that is more intuitive, smaller, and faster than the last. The technology described in this book provides unprecedented opportunities-at home, at school, in the workplace, and in the community-for people with disabilities. With today's exciting new tools, existing stereotypes and assumptions about having a disability can be tossed out in favor of new expectations and greater integration into all facets of life.
Because of ongoing and dramatic shifts in technology, we do not need to be limited in our thinking about what is available today. For this reason, we encourage you to start with a vision of what can be rather than what is. If someone can dream it, someone else will design, adapt, modify, develop, or make it. We should also avoid limiting our thinking to high-tech Dick Tracy-type technology. A place mat comprised of communication symbols or a one-message communication device might be as effective in delivering the message "please pass the salt" as a more expensive or sophisticated device.
The role of technology is to support and enhance human relationships, to provide access to new things or to old things in new ways, to unleash human potential, and to redefine power and control. Set your goals high to meet the possibilities of tomorrow's technology.
Using technology to do things for ourselves, rather than depending on people to do things for us, allows us to control our own lives. Chris, a young man with cerebral palsy who uses an array of assistive-technology devices to control a computer, says through his communication-software program, "Today I think about my life differently because now I can read and write." Chris had a dream and a plan: to learn to read and write, get a job, and live in his own apartment. As of today, he is halfway there. If he and his family had merely accepted what his teachers and therapists expected of him, he would still be illiterate and have no future apart from one imposed by others.
The focus of this book is to look at the processes and steps we can take to reach our personal goals by incorporating technology into our everyday lives. Some of those aspirations might include reading the newspaper, talking on the telephone, retrieving objects off high shelves, playing with toys, or participating in a math lesson. Because of technology, people who are blind, who cannot stand to reach, who may be unable to use their hands or arms, or who may have difficulty learning in traditional ways can do all these daily activities and more.
Useful Preparation
The words we use can sometimes create barriers to learning about ourselves and our potential. For example, the word technology usually creates an image of a computer, robot, or Palm Pilot. When we add words like assistive or adaptive, people may become increasingly confused and wonder if the phrase really has anything to do with them. Some cultures may even lack words for assistive technology or familiarity with the concept. Likewise, the notion that technology can provide freedom and autonomy may be viewed differently from one culture or community to another. To make sure that we, the authors of this book, are "speaking the same language" as you, the reader, we have defined a few words and phrases commonly used when discussing technology solutions.
Conventional technology
We consider the term conventional technology to mean typical computers and their operating systems and programs. These are the products that are readily found in your local computer stores. They are the tools you see everywhere-in offices, schools, libraries, etc. As technology has evolved, so has the capacity of conventional computers and software to flexibly meet the needs of a wide range of users with and without disabilities. Sometimes the technology solution is already built into the computer sitting on your desk. Once you know about these features, they are easily available to you at no extra cost.
Universal design
As conventional technology moves toward being useable by a wider and more diverse group of people, it is described as being universally designed. This means that the designer of the piece of equipment or program has taken into account the varying learning styles and needs of potential users. Rather than only being a tool used by someone with a disability, it is a tool that works better for everyone, including someone with a disability. An example is the location of a computer power switch on the keyboard or on the front of the computer. This change from the traditional rear-mounted switch was critical to independent computer use by many people with disabilities and is a great convenience to every computer user.
Assistive-technology device
As defined in the Assistive Technology Act of 1998, the term assistive-technology device means any item, piece of equipment, or product system-whether acquired commercially off the shelf, modified, or customized-that is used to increase, maintain, or improve the functional capabilities of people with disabilities. The term assistive-technology device is often abbreviated to the words assistive technology or the acronym AT. You will find these phrases used throughout the book.
An assistive-technology device can be as simple as an adapted spoon, as familiar as a wheelchair, or as complex as an eye-gaze system that controls a computer. The definition of assistive technology as originally stated in the Technology-Related Assistance for Individuals with Disabilities Act of 1994 (also known as the Tech Act) has been used in all subsequent legislation, including the Americans with Disabilities Act (ADA), the Amendments to the Rehabilitation Act, and changes to the Individuals with Disabilities Education Act (IDEA). While the reader may incorporate all types of assistive technology into his or her life, this book specifically focuses on computer-related technology solutions.
Assistive-technology services
According to the Tech Act of 1994, an assistive-technology service directly assists a person with a disability in the selection, acquisition, or use of an assistive-technology device.
This same law, for the first time, also recognized the role of the user-that is, the person with a disability-in selecting, acquiring, and using assistive-technology devices. Terms such as consumer-responsive helped establish a person-centered model of services that was intended to shift control of devices, services, and funding sources from professionals to users or "consumers" of these devices and services. Other components of assistive-technology services include the right to an evaluation and the right to purchase, lease, or replace devices.
Disability
In U.S. statute 42 U.S.C. 12102(2), the term disability means, with respect to an individual,
(a) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
(b) a record of such an impairment; or
(c) being regarded as having such an impairment.
Disability is a universally common occurrence and characteristic of the human condition. The U.S. Census Bureau states that in the United States there are 54 million people with disabilities. That represents 20 percent of the population. People with disabilities are the nation's largest minority. As people age, the prevalence of visual, hearing, and mobility disabilities greatly increases. Most people, if they live long enough, will age into disability.
The presence of a disability, whether congenital or acquired through accident, injury, or illness, may have an impact on the type of technology you need and how you develop your plan for acquiring that technology. For example, if you have ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), you may need to think in terms of how the technology you use today can be adapted or modified as your needs and abilities change. On the other hand, if you break your arm and can't use your dominant hand to write for three months, you may need some temporary modification in order to continue to use a computer.
Throughout this book we tend to think about disability in terms of function or functional limitation. We are less concerned about any particular disability by name or category than we are about the specific functions you are trying to build or enhance. Access to technology is often the means by which you can accomplish your personal goals. Whether your need for an alternate method of using the computer is due to one disability or another does not matter. We look at how to improve upon your functions or address a functional limitation through a good match with the appropriate device.
Remember Chris, who was mentioned earlier in the chapter? Chris was 18 years old when he first started visiting his local technology-access center in Knoxville, Tennessee. That was eight years ago. He has cerebral palsy, cannot use his voice to speak words, has limited use of his arms and hands, and has difficulty controlling the movements of his body. Chris, along with the staff of the center and Chris's parents, worked as a team toward his dream of getting on the Internet by himself. He was aware of the power of words, but he could not read or write. In his own words (typed recently on a computer with the use of a word prediction program and switch interface), "I didn't want to read and write, but I had to learn to get on the Internet." Chris continues to work with his team to identify the technology solutions that will enable him to gain the self-confidence, the increased levels of literacy, and the employment skills necessary to create webpages. He now uses the Internet independently, sends e-mails to friends, and participates in chat rooms. This is a journey that is ongoing, as he and his family cope with his transition from school, obtain support from the state's Medicaid program, attain services through vocational rehabilitation, acquire transportation (no easy task in rural eastern Tennessee), and continue to support his fledgling independence. His technology has changed from an Apple IIE computer (in 1995) to his current setup, a portable system equipped with EZ Keys and augmentative communication software. The changes in his technology were a result of gains in literacy skills, advances in technology, and changes in his personal life.
Steps to Consider
Creating a vision for how you will use technology and then developing a plan to achieve that vision will make the process of gaining access to technology more manageable. Your plan will evolve as you gain more knowledge and deal with issues, such as funding sources, transportation, building a support network, and culturally based differences in expectations. There will be overlapping circles of goals, needs, abilities, technology, and supports and services that shape and modify your plan.
Make a Plan
You do not need to know about existing technology in order to develop plans to achieve your vision. What is more important is for you to determine the things that you want to be able to do that are now difficult or impossible. Is it important for you to read books by yourself, write your own letters, converse on the telephone, play card games with your friends, visit the library each week, or see the recipes you are trying to cook? Would you like to be able to get out of a chair by yourself rather than have to wait for someone to help you? Are books too heavy or impossible for you to carry, hold, or use? Do you want people to understand what you want to say? Chapter 2 will guide you through the planning process.
Know Your Resources
Once you have a vision in mind, examine your financial resources and your "people" resources. Very few of us are born wealthy enough to purchase whatever we want, whenever we want it, which makes us dependent on other funding sources. Some of these funding sources may be mandated by federal law, such as those protecting the rights of infants and children to an equal education, providing support for adults who want to go to work, or setting requirements for accessibility in the workplace. Beyond your own personal resources, private insurance as well as state Medicaid and federal Medicare programs may cover assistive-technology devices that are considered medically necessary. Civic groups, such as Sertoma, the Lions Club, and Kiwanis, as well as churches or charitable individuals or businesses, may provide at least partial funding for needed devices. Chapter 6 is full of ideas and strategies for funding.
People resources may include family members who will help you learn to use or care for a device, as well as therapists and teachers who may want to incorporate the use of a device into a therapy setting or classroom. Vocational rehabilitation counselors may support your need to use assistive technology in job-training classes. Peers and colleagues are also important resources. They may help with transportation so you can get training on the use of your new devices or provide critical moral and technical support during the learning period. Vendors of products are also important people resources, as they may be available to demonstrate or loan new products.
You should also learn about resources in your community. You may have a neighborhood school, community technology center, or Alliance for Technology Access center where you can learn about products or get training. Vendors may offer free or low-cost training in your area. Your local office on aging may have information or resources about low-tech devices that would help you live in your own home more easily or independently. Refer to Chapter 3 for information on developing your people resources.
Know Your Rights and Be Your Own Advocate
Every state in the United States has an independent-living center, a parent-training program, an advocacy service, and free or low-cost legal services. These are available for you to utilize when you feel that you are not getting the devices or services you need. Existing federal laws protect the rights of people with disabilities in the workplace and ensure access to public buildings and programs. Some existing laws are considered civil rights laws, such as the Americans with Disabilities Act. Other laws are considered entitlement legislation because the presence of a disability entitles students, for example, to the same educational experiences as peers without disabilities. Medicare may fund a speech-generating device (SGD) if it is considered a medical necessity; however, actually acquiring a device through Medicare may be contingent on knowing your resources and rights. Chapter 5 will help you learn more about your legal rights.
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Excerpted from Computer Resources for People with Disabilities Copyright © 2004 by Alliance for Technology Access. Excerpted by permission.
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