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Study on A.T. Funding from the National Council, 1993

STUDY ON THE FINANCING OF ASSISTIVE TECHNOLOGY DEVICES AND SERVICES FOR INDIVIDUALS WITH DISABILITIES

A Report to the President and the Congress of the United States

March 4, 1993

National Council on Disability

1331 F Street NW Suite 1050 Washington, DC 20004-1107

(202) 272-2004 Voice (202) 272-2074 TT (202) 272-2022 Fax

The views contained in this report do not necessarily represent those of the administration, as this document has not been subjected to the A-19 Executive Branch review process.

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ACKNOWLEDGMENT

The Council wishes to acknowledge and convey its sincere appreciation to the many individuals who contributed to this report. Members of the Advisory Committee, numerous people with disabilities and their families, Title I (P.L. 100-407) state funding directors, service providers, federal agencies, state agencies, advocates, and other experts from across the country contributed to this effort by participating in public forums, attending advisory meetings, researching state programs, completing studies, and otherwise providing input and assistance to the Council in the process of developing the ideas and recommendations contained in this report. A special thanks to Patricia A. Morrissey, Ph.D., for her support of this project.

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TABLE OF CONTENTS

MISSION OF THE NATIONAL COUNCIL ON DISABILITY

NATIONAL COUNCIL ON DISABILITY, MEMBERS AND STAFF

MEMBERS OF THE ADVISORY COMMITTEE

PROJECT STAFF

EXECUTIVE SUMMARY

INTRODUCTION

DEFINITION OF ASSISTIVE TECHNOLOGY DEVICES AND SERVICES

A NEW DEFINITION OF DISABILITY

DEFINING THE PROBLEM

STATEMENT OF FINDINGS

RESEARCH FINDINGS

STATEMENT OF RESEARCH FINDINGS

POLICY RECOMMENDATIONS

TOPICS FOR FURTHER RESEARCH

CONCLUSION

REFERENCES

APPENDICES

A. Biographical Information: Members and Staff of the National Council on Disability

B. List of Participants at Three Regional Public Forums

C. Recent Public Policy Experience in the Area of Assistive Technology

TABLES

1. Assistive Technology Financing Options

2. Recent Public Policy Developments

3. Public Programs with a Potential to Fund Technology Access

4. Equipment Identified as Making a Significant Difference

5. Assistive Technology Funding Access: System Reform Options

6. Federal Income Tax Recommendations for Assistive Technology

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SUPPLEMENTARY READING

Reports Available from the National Council on Disability

Report 1. Literature Review

Report 2. Review and Analysis of Federal Laws, Regulations, Policy, and Practice

Report 3. Collection and Analysis of Information from a Nine-State Sample

Report 4. Analysis of Policies and Practice of Private Health Insurers' Coverage of Assistive Technology

Report 5. Alternative Funding Programs for Assistive Technology

Report 6. Lending Practices of Financial Institutions Toward Individuals with Disabilities

Report 7. Cost-Benefit Study of the Provision of Assistive Technology Devices and Services

Report 8. Directory of Consultants on the Financing of Assistive Technology Devices and Services

Report 9. Summary of Recommendations from Three Regional Public Forums

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MISSION OF THE NATIONAL COUNCIL ON DISABILITY

The National Council on Disability is an independent federal agency composed of 15 members appointed by the President of the United States and confirmed by the U.S. Senate. The National Council was established in 1978 as an advisory board within the Department of Education (P.L. 95-602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed the National Council into an independent agency. The statutory mandate of the National Council at the time of this study assigned the Council the following duties:

* Establishing general policies for reviewing the operation of the National Institute on Disability and Rehabilitation Research (NIDRR);

* Providing advice to the Commissioner of the Rehabilitation Services Administration (RSA) on policies and conduct;

* Providing ongoing advice to the President, the Congress, the RSA Commissioner, the Assistant Secretary of the Office of Special Education and Rehabilitative Services (OSERS), and the Director of NIDRR on programs authorized in the Rehabilitation Act;

* Reviewing and evaluating on a continuous basis the effectiveness of all policies, programs, and activities concerning individuals with disabilities conducted or assisted by federal departments or agencies and all statutes pertaining to federal programs, and assessing the extent to which these provide incentives to community-based services for, promote full integration of, and contribute to the independence and dignity of individuals with disabilities;

* Making recommendations of ways to improve research; the collection, dissemination, and implementation of research findings; service; and administration affecting persons with disabilities;

* Reviewing and approving standards for independent living programs;

* Submitting an annual report with appropriate recommendations to the Congress and the President regarding the status of research affecting persons with disabilities and the activities of RSA and NIDRR;

* Reviewing and approving standards for Projects with Industry programs;

* Providing to the Congress, on a continuous basis, advice, recommendations, and any additional information that the National Council or the Congress considers appropriate;

* Providing guidance to the President's Committee on the Employment of People with Disabilities; and

* Issuing an annual report to the President and the Congress on the progress that has been made in implementing the recommendations contained in the National Council's January 30, 1986 report, Toward Independence.

While many government agencies deal with issues and programs affecting people with disabilities, the National Council is the only federal agency charged with addressing, analyzing, and making recommendations on issues of public policy that affect people with disabilities regardless of age, disability type, perceived employment potential, economic need, specific functional ability, status as a veteran, or other individual circumstance. The National Council recognizes its unique opportunity to facilitate independent living, community integration, and employment opportunities for people with disabilities by ensuring an informed and coordinated approach to addressing their concerns and eliminating barriers to their active participation in community and family life.

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NATIONAL COUNCIL ON DISABILITY, MEMBERS AND STAFF*

Members

John A. Gannon, Acting Chairperson, Cleveland, Ohio, and Washington, D.C.

Kent Waldrep, Jr., Vice Chairperson Plano, Texas

Linda W. Allison, Dallas, Texas

Ellis B. Bodron, Vicksburg, Mississippi

Larry Brown, Jr., Potomac, Maryland

Mary Ann Mobley Collins, Beverly Hills, California

Anthony H. Flack, Norwalk, Connecticut

John Leopold, Pasadena, Maryland

Robert S. Muller, Grandville, Michigan

George H. Oberle, P.E.D., Stillwater, Oklahoma

Sandra Swift Parrino, Briarcliff Manor, New York

Mary Matthews Raether, McLean, Virginia

Anne Crellin Seggerman, Fairfield, Connecticut

Michael B. Unhjem, Fargo, North Dakota

Helen Wilshire Walsh, Greenwich, Connecticut

Staff

Andrew I. Batavia, J.D., M.S., Executive Director

Billie Jean Hill, Program Specialist

Mark S. Quigley, Public Affairs Specialist

Brenda Bratton, Executive Secretary

Stacey S. Brown, Staff Assistant

Janice Mack, Administrative Officer

Lorraine Williams, Office Automation Clerk

*Sandra Swift Parrino initiated this study when she was Chairperson of the National Council on Disability. At the time of the study, Ethel Briggs was Executive Director, Harold Snider was Deputy Director, Katherine Seelman was Research Specialist, and Kathy Roy Johnson was Program Specialist at the National Council.

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MEMBERS OF THE ADVISORY COMMITTEE

Anthony Castagna, Ph.D., Co-chair, Sunnyvale, California

Robin May, Co-chair, Glen Cove, New York

Susan Brummel, Washington, D.C.

James Cheadle, Albuquerque, New Mexico

Ronald W. Conley, Ph.D., Washington, D.C.

Florence B. Curnutt, San Jose, California

Alexandra Enders, OTR/L, Missoula, Montana

William H. Graves, Ed.D., Washington, D.C.

Maureen E. Hunt, Cuyahoga Falls, Ohio

Carl Jensema, Ph.D., Silver Spring, Maryland

Dennis R. LaBuda, Miami, Florida

Kathleen LeBeau, Atlanta, Georgia

Harry J. Murphy, Ed.D., Northridge, California

Michael J. Rosen, Ph.D., Cambridge, Massachusetts

Lynda O. Sampson, Washington, D.C.

Lawrence A. Scadden, Ph.D., Washington, D.C.

Rachel Wobschall, St. Paul, Minnesota

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PROJECT STAFF

Chairman

George H. Oberle, P.E.D.

National Council on Disability

Committee on Technology

Project Officer

Katherine D. Seelman, Ph.D.

National Council on Disability

Project Manager

Michael W. Morris

United Cerebral Palsy Associations, Inc. (UCPA)

Policy/Research Associates

Allan I. Bergman, UCPA

Patricia Brady, UCPA

Christopher Button, Ph.D., UCPA

Kathleen Gradel, Ph.D., UCPA

Bob Griss, UCPA

Tara Kelly, UCPA

Beth Priaulx, UCPA

Consultants

David Dean, Ph.D., University of Richmond

John DeWitt, DeWitt and Associates

Lewis Golinker, Project Mentor, UCPA

Tecla Jaskulski, Jaskulski and Associates

Deborah Kaplan, World Institute on Disability

Steven Mendelsohn, Smiling Interface

Technical Support

Patricia Brady

Tara Kelly

Caroline McMeekin

Jenifer Simpson

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EXECUTIVE SUMMARY

The Vision

For Americans without disabilities, technology makes things easier. For Americans with disabilities, technology makes things possible. (Radabaugh, 1988)

The National Council on Disability (NCD) is proud to release this landmark study entitled The Financing of Assistive Technology Devices and Services for Individuals With Disabilities. As early as 1986, with the issuance of Toward Independence, the National Council recognized the important role that assistive technology can have in the lives of individuals with disabilities. As originator and developer of the Americans with Disabilities Act (ADA) (P.L. 101-336), the National Council believes that access to assistive devices and services is necessary to realization of the goals of the ADA.

This report is the culmination of 19 months of research by the NCD. The study was funded under Title II of the Technology-related Assistance for Individuals with Disabilities Act of 1988 (P.L. 100-407), referred to as the Tech Act. Under the Tech Act the Congress directed the National Council to conduct a study on the financing of assistive technology that will produce recommendations to the President and to Congress on improving access to the financing of assistive technology devices and services for individuals with disabilities.

Highlights

People with disabilities and their families have been involved in every step of the study. Individuals who are users of assistive technology have helped to demonstrate the benefits and costs of assistive technology. Indeed, an important objective of the research was to test something individuals with disabilities have long recognized--that assistive technology is as cost-effective as it is necessary in their lives. As a result, the study documents both the benefits and the costs of different kinds of technology-related assistance. The following are some highlights of responses from assistive technology users (Supplementary Reading, Report 7):

* Almost three-quarters of school-age children were able to remain in a regular classroom, and 45 percent were able to reduce school-related services.

* Sixty-two percent of working-age persons were able to reduce dependence on family members, 58 percent were able to reduce dependence on paid assistance, and 37 percent were able to increase earnings.

* Eighty percent of elderly persons studied were able to reduce dependence on others, half were able to reduce dependence on paid persons, and half were able to avoid entering a nursing home.

* Almost one-third of assistive technology users indicated that their family saved money, averaging around $1,110 per month, with assistive technology. At the same time, one-quarter of the users indicated that they experienced additional equipment-related expenses that averaged approximately $287 per month.

* Of the 42 users of assistive technology who reported having paid jobs, 92 percent reported that the assistive technology enabled them to work faster or better, 83 percent indicated that they earned more money, 81 percent reported working more hours, and 67 percent reported that the equipment had enabled them to obtain employment. Fifteen percent indicated that the equipment enabled them to keep their jobs, 38 percent reported that the equipment allowed them to pursue advanced degrees, 23 percent reported taking a larger academic load, and 12 percent reported increasing training.

* When asked to estimate the impact of equipment on their quality of life, assistive technology users reported that without the equipment, their quality of life on a scale from 1 to 10 was around 3; as a result of the equipment, it jumped to approximately 8.4 points.

The Promise of Assistive Technology

Assistive technology is redefining what is possible for children and adults with disabilities. In the home, the classroom, the workplace, and the community, assistive technology is providing creative solutions that enable individuals with disabilities to be more independent, productive, and integrated into the mainstream of society and community life. Assistive technology can be simple or complex. It includes velcro, adapted clothing and toys, computers, seating systems, powered mobility, augmentative communication devices, special switches, and thousands of other commercially available or adapted items. These technology solutions improve an individual's ability to learn, compete, work, and interact with family and friends (Enders, 1990).

In every state, children and adults with disabilities and their families, friends, and advocates are searching for assistive technology solutions that will respond to individual needs and enhance independence. Testimony from across the country reminds us that the major problem we face today is not the research and development of new technologies, but the delivery of existing assistive technology solutions to the people who need them.

Public Policy

Since 1986, the President and the Congress have adopted a series of laws that acknowledge the importance of assistive technology in the lives of individuals with disabilities (see Table 2, "Recent Public Policy Developments," p. 37). Perhaps the most significant of these is the Tech Act, which received overwhelming support in both the U.S. House and Senate. The legislative history surrounding its enactment includes testimony of dozens of witnesses providing firsthand information on the importance of assistive technology in people's lives, as well as the difficulties often encountered in gaining access to needed technology.

Title I of the Tech Act provides assistance to states for the development of consumer-responsive statewide programs of assistive technology services. Since 1988, 42 states have received funding to develop their statewide programs. Under Title II of the Act, the Congress mandated this study in recognition of the major problems faced by individuals with disabilities and their families with the financing of assistive technology devices and related services. Congress directed the National Council to conduct a study and to make recommendations concerning the following:

* Federal laws, regulations, procedures, and practices that facilitate or impede the ability of the states to develop and implement consumer-responsive statewide programs of technology-related assistance for individuals with disabilities;

* Federal and state laws, regulations, procedures, and practices that facilitate or impede the acquisition of, financing of, or payment for assistive technology devices and assistive technology services for individuals with disabilities;

* Policies, practices, and procedures of private entities (including insurers) that facilitate or impede the acquisition and financing of, or payment for, assistive technology devices and assistive technology services for individuals with disabilities; and

* Alternative strategies for acquiring or paying for assistive technology devices and assistive technology services [29 USC 2231].

The Scope of the Study

The National Council, in consultation with a distinguished Advisory Committee, engaged in a variety of efforts to collect pertinent information and viewpoints regarding the financing of assistive technology devices and services for all individuals with disabilities. This report summarizes the National Council's findings and presents recommendations for improving access to the financing of assistive technology devices and related services for all individuals with disabilities. The 12 work products of the study are available in the form of Supplementary Readings, which present in detail a range of issues related to the financing of assistive technology. Supplementary Readings include the following:

1. Literature Review

The Literature Review on the Financing of Assistive Technology is a comprehensive review of resources currently available on the financing of assistive technology. The National Council reviewed and summarized more than 100 documents related to financing; reviewed key public policy developments; outlined key findings from the literature; identified major barriers to the financing of assistive technology as indicated in the existing literature; and suggested options, based on the literature, for policy approaches to change (see Supplementary Reading, Report 1).

2. Review and Analysis of Federal Laws, Regulations, Policy, and Practice

The National Council analyzed policies and practices of 26 federal laws on the financing of assistive technology. The report identifies barriers and facilitators to financing assistive technology and offers suggestions to improve access to financing through various federal- and state-level initiatives (see Supplementary Reading, Report 2).

3. Collection and Analysis of Information from a Nine-State Sample

Nine states currently receiving funding under the Tech Act were selected by the National Council to participate in an analysis of state policies and practices on the financing of assistive technology: Arkansas, Illinois, Maine, Maryland, Minnesota, New Mexico, North Carolina, Oregon, and Utah. The report describes the effectiveness of various funding streams within each state in paying for assistive technology devices and related services for children and adults with disabilities (see Supplementary Reading, Report 3).

4. Analysis of Policies and Practice of Private Health Insurers' Coverage of Assistive Technology

Since private health insurance already covers many types of assistive technology under certain conditions, this study sought to analyze the determinants of private health insurance coverage for assistive technology. Four types of private health insurers were identified: Blue Cross-Blue Shield, commercial or for-profit health insurers, health maintenance organizations (HMOs), and self-insured employer plans. The benefits provided by these types of health insurance were compared with the medical benefits in workers compensation insurance plans.

In comparing these five types of insurers, the National Council worked with financing specialists in the Tech Act programs in nine states to learn which types of assistive technology were most likely and least likely to be covered. Written descriptions of each type of health insurance plan were examined to ascertain specific conditions under which covered services would be paid. In addition, the National Council gathered information about private insurance from different types of insurers, Durable Medical Equipment (DME) vendors and manufacturers, rehabilitation professionals, and consumers at the three regional forums and through selective interviews (see Supplementary Reading, Report 4).

5. Alternative Funding Programs for Assistive Technology

Assistive financing or loan guarantees, credit financing, revolving loan funds, and/or subsidy programs are sound alternatives to financing assistive technology. In this report, the National Council profiles 16 alternative strategies for acquiring and financing assistive technology. The report describes a variety of programs available for the purchase of assistive technology devices and contains information on each program's funding source, eligibility requirements, and strengths and weaknesses (see Supplementary Reading, Report 5).

6. Lending Practices of Financial Institutions Toward Individuals With Disabilities

The National Council examined a broad spectrum of financial institutions nationwide to develop a preliminary understanding of current lending practices to individuals with disabilities. Analysis of study results led to the development of several important options to be considered for both private and public initiatives (see Supplementary Reading, Report 6).

7. Cost-Benefit Study of the Provision of Assistive Technology Devices and Services

This study is the first to examine whether the provision of assistive technology is cost-effective for both individuals and programs. The National Council studied the costs and benefits of providing assistive technology devices and related services for a random sample of more than 130 individuals with physical, sensory, or multiple disabilities in nine selected Title I states (see Supplementary Reading, Report 7).

8. Directory of Consultants on the Financing of Assistive Technology Devices and Services

The National Council developed a directory that lists more than 60 knowledgeable consultants throughout the nation on the financing and acquisition of assistive technology devices and related services. The directory also provides sources for a range of assistance in all regions of the country (see Supplementary Reading, Report 8).

9. Summary of Recommendations from Three Regional Public Forums

The National Council conducted three regional public forums in Los Angeles, California; Portland, Maine; and Minneapolis, Minnesota. More than 100 witnesses from across the country representing a range of disabilities and perspectives participated in the forums (see Appendix B for a list of all forum participants). Witnesses included individuals with cognitive, physical, and sensory disabilities; parents; federal and state agency staff; providers and manufacturers of technology; insurers; Tech Act state directors; employers; and experts in the field of financing assistive technology (see Supplementary Reading, Report 9).

Issues and Problems

Several overarching issues were identified and affirmed across the body of research undertaken, as the following diagram illustrates. All decisions about access to assistive technology for a child or adult with a disability involve more than funding. Although ultimately all decisions are about resource allocation, there is an interdependence among user and provider information awareness, the capacity of the service delivery system to respond in a timely way to individual needs, and access to appropriate assistive technology.

[Chart not available]

There are costs associated with a national system of information awareness to reach all potential users of assistive technology. There are costs associated with the development of a consumer-responsive service delivery system with the capacity to reach all potential users of assistive technology. And there are obvious costs of purchasing assistive technology devices and support services in response to individual needs that continue to change over time. There are also significant costs to individuals and society of not making technology available to individuals with disabilities. At issue is the question of how to allocate resources in the most cost-effective and equitable manner to ensure access to assistive technology for all who need it.

Who should bear the costs of assistive technology services and devices? There is no single response that will prove to be effective for all circumstances. There are instead a combination of strategies or approaches that build on the success of current public policy, public-private sector partnerships, selected state experience, and legal precedents to create a vision of an accessible America, with technology playing a critical role in changing the ways individuals with disabilities interact with their social and physical environments. The research of the National Council has been reviewed, analyzed, and synthesized into a set of the 12 major findings summarized below:

Findings

Finding 1: Information Awareness and Coordination

Information on assistive technology devices and services is difficult to find and often inconsistent from source to source. Information dissemination is fragmented and uncoordinated. The barrier of awareness precedes questions of technology funding and thus denies individuals with disabilities an effective means to improved independence, productivity, and integration.

Finding 2: Inconsistent Standard of Need To Justify Funding Across Public Programs

There is no consistent standard of need to justify funding for assistive technology services and devices across public programs.

Finding 3: Awareness and Enforcement of Existing Rights and Entitlements

There is a paucity of expertise in applying rights' protections to secure individuals' right to assistive technology. Parents, providers, and individuals with disabilities are uninformed about their rights under the law. There has been only a limited effort at the state and federal levels to monitor and enforce the right to, or requirements for, expanding assistive technology access for children and adults with disabilities.

Finding 4: Health Care Funding of Assistive Technology

Typically, reimbursement for assistive technology devices and services in the health care system conforms to the requirements of the funding source, not to the functional needs of individuals with disabilities.

Finding 5: Coordination of Services and Funding

Information presented to the National Council strongly indicates a continued and widespread lack of cooperation and coordination between and within various funding agencies.

Finding 6: Monitoring the Use of Assistive Technology

There is no national database or legislative mandate that calls for the routine collection of data regarding the use of assistive technology or the collection of data regarding methods of financing through federal programs for assistive technology available to individuals with disabilities. There is no agreed-upon classification system at the federal or state level to distinguish different types of technology-related assistance for the collection and analysis of data on service delivery and funding patterns and trends.

Finding 7: Consumer Choice and Control

Emphasis on individual choice and control of assistive technology services and funding is conspicuously lacking in most programs.

Finding 8: Funding for Support Services

Once individuals with disabilities obtain needed technology, little attention and funding support are given to the training and ongoing assistance and maintenance needed to maximize benefits to the user.

Finding 9: Gaps in Access for Specific Populations

There are significant groups of individuals with disabilities who remain unserved or underserved by existing public and private programs that have financing available for assistive technology.

Finding 10: Availability of Funding Resources

There is no system, public or private, uniquely devoted to the funding and financing of assistive technology to respond to the full range of unmet needs. At best, assistive technology and related services funding is part of a menu of choices that must be made in the allocation of limited resources in multiple public and private service delivery systems.

Finding 11: Impact and Benefits of Assistive Technology

Preliminary study results from a sample of persons with disabilities in seven states from four age groups document the benefits compared to the costs of different kinds of technology-related assistance. Expanded documentation of the benefits of use of assistive technology should favorably influence resource allocation decisions at the national, state, and local levels.

Finding 12: Funding Solutions

There is no one answer to the complex problem of assistive technology funding for persons with disabilities of all ages nationwide. The National Council has identified seven successful approaches that can be refined and expanded to continue to enhance funding access to assistive technology for Americans with disabilities. These financing options are discussed extensively in individual topic papers presented in the form of supplementary reading to this report. These reports will provide readers with a better understanding of how identified programs contribute to the financing and acquisition of appropriate assistive technology devices and related services for individuals with disabilities. Each of these identified approaches is discussed in detail in the report. These seven approaches are:

1. Refining, refocusing, and expanding public programs;

2. Creating incentives for the development and replication of alternative financing mechanisms with public and private partnerships;

3. Refining and refocusing the health care system, including public and private insurance;

4. Creating tax incentives for improved technology access;

5. Refining and expanding the nexus of civil rights and technology access;

6. Mandating the concepts of universal design; and

7. Capitalizing on the important innovations in telecommunications and changing public policy.

Recommendations

The research conducted by the National Council, including three regional public forums, generated more than 200 suggestions to improve funding access for assistive technology devices and services. The National Council has thoroughly reviewed these suggestions as well as the research data generated from selected states and a random sampling of technology users with disabilities. A concise list of 16 recommendations has been refined from the larger list of suggestions by reviewing them according to the following criteria:

* Magnitude of the problem addressed;

* Potential scope of impact of the proposed solution on identified barriers;

* Potential for implementation;

* Consistency with the principles of ADA to promote full citizenship for persons with disabilities; and

* Potential to achieve cost-benefit results in quality of life for persons with disabilities and their families.

The policy recommendations are summarized as follows:

Recommendation 1

Mandate by statute the development of a national classification system for assistive technology devices and services and establish and collect uniform data sets across public programs.

Recommendation 2

Authorize the National Institute on Disability and Rehabilitation Research (NIDRR) to publish by the end of each calendar year an Annual Report to the Congress on the status of funding of assistive technology devices and services for Americans with disabilities.

Recommendation 3

Establish the statutory authority for a federal Assistive Technology Interagency Coordination Council to meet quarterly and be responsible for improved coordination of services and funding for assistive technology for Americans with disabilities.

Recommendation 4

Amend the state plan requirements in multiple statutes to require assurances and a planning process with timelines for expanding funding access to assistive technology for children and adults with disabilities.

Recommendation 5

Amend the individual program planning requirements in multiple statutes to provide notice to individuals with disabilities and their families of the right to assistive technology devices and services in response to individualized needs in a timely manner.

Recommendation 6

Add the complete definition of assistive technology devices and services adopted in the Technology-related Assistance Act (P.L. 100-407) to the following programs of the Social Security Act: Title II, Social Security Disability Insurance; Title V, Maternal and Child Health Block Grant; Title XVI, Supplemental Security Income; Title XVIII, Medicare; and Title XIX, Medicaid.

Recommendation 7

Reauthorize the Technology-related Assistance Act (P.L. 100-407) for an additional three years and strengthen opportunities for interagency coordination, systems change, and consumer choice and control.

Recommendation 8

Establish Assistive Technology Demonstration and Recycling Centers nationwide in an appropriate city of each state and in the top 50 Standard Metropolitan Statistical Areas to be operated by existing Centers For Independent Living or other community-based organizations that are consumer controlled and directed to enhance consumer choice in and control of assistive technology services and funding.

Recommendation 9

Authorize the use of the Social Security Trust Fund as a financing source for purchasing assistive technology that enhances the capacity to work through an Individualized Employment Account (IEA).

Recommendation 10

Establish a Technology Watch program patterned after the NCD's current ADA Watch activities to monitor compliance with enforcement of federal rights to or requirements for expanding technology access for children and adults with disabilities.

Recommendation 11

Authorize by statute the establishment of a National Center on Assistive Technology Legal Advocacy to specialize in funding issues.

Recommendation 12

Develop statutory authority that requires private health insurers to apply medical necessity standards to durable medical equipment, prostheses, and orthotics that enhance function in activities related to health, safety, and Activities of Daily Living (ADLs).

Recommendation 13

Create a comprehensive set of fiscal incentives encouraging private industry to invest in the production, marketing, and distribution of assistive technology to benefit Americans with disabilities.

Recommendation 14

Amend Section 162 of the Internal Revenue Code to allow taxpayers with disabilities who do not itemize the option of claiming assistive technology expenses as above-the-line adjustments to income. Request the Department of the Treasury to develop a cohesive set of tax policies on assistive technology for persons with disabilities that clarifies national values and goals as articulated in the Americans with Disabilities Act and the Technology-related Assistance Act.

Recommendation 15

Authorize by statute universal product design guidelines for application in the manufacture of electronic equipment and other products to enhance accessibility by individuals with disabilities.

Recommendation 16

Amend the Communications Act of 1934 to establish and implement a national policy of available, affordable, and accessible telecommunication services to Americans with disabilities.

Conclusion

These recommendations represent the urgent voices of people with disabilities and their families and the cogent statements of professionals. The NCD looks forward to the adoption and the implementation of these recommendations for the empowerment of people with disabilities and their families.

INTRODUCTION

Technology is a lot like freedom.... Once it's uncorked, there's no putting it back. Its fruits are there for everyone's enjoyment and benefit. It is often said that assistive technology is liberating [for the individual with a disability] and that is certainly the case. But it is time to be clear that assistive technology is liberating not just for the individual with a disability but indeed for America as a whole. (Williams, 1991)

Assistive technology is redefining what is possible for children and adults with a wide range of disabilities. In the home, the classroom, the workplace, and the community, assistive technology is providing creative solutions that enable individuals with disabilities to be more independent, self-confident, productive, and integrated into the mainstream of society. Assistive technology includes adapted toys, computers, seating systems, powered mobility, augmentative communication devices, special switches, and thousands of commercially available or adapted solutions. These technology solutions improve an individual's ability to learn, compete, work, and interact with family and friends (Enders, 1990).

At the public forum held by the Council in Portland, Maine, Elaine Clemm of Warwick, Rhode Island, shared a story about her seven-year-old son Christopher, who has severe cognitive and physical disabilities. Her story shows the role assistive technology can play in the lives of individuals with disabilities and their families:

One day when I happened to be at the [Child Development] Center, someone came looking for me and told me they wanted to show me something in my child's classroom. I went and what I saw I never in my wildest dreams expected.

My son Christopher was sitting in front of a computer. The screen had a touch plate on it, and when it was touched new colors would show up on the screen as well as a sound. But Christopher was not using his hand, he was using his nose! When I leaned over to speak to him, he looked up and gave me the biggest smile (which he very seldom did). I couldn't help but cry. It took six years for a response like this. Before this we were not even sure he had vision or adequate hearing. Thanks to the use of technology and the dedicated people who worked with him, this was the beginning of many new things for Chris. He now uses a computer on a routine basis and he also continues to use switches to operate toys, appliances for cooking and musical items.

In every state, children, youth, and adults with disabilities and their families, friends, and advocates are searching for assistive technology solutions that will respond to diverse individualized needs and enhance independence. Testimony from parents, individuals with disabilities, and professionals across the country remind us that the major problem we face today is not the research and development of new technologies, but instead the linking of already existing assistive technology solutions to the problems confronted by persons with disabilities as they learn, work, and engage in daily living activities. In the last 10 years there have been significant public policy developments that have improved access to assistive technology. These approaches to change have been as varied as new legislation focusing on access to assistive technology and amendments to a wide range of existing laws, to very specific agency policy directives clarifying the right to assistive technology in a major public program (see Appendix C, "Recent Public Policy Experience in the Area of Assistive Technology").

Perhaps the most significant public policy influence was enactment of the Tech Act, which received overwhelming support in both the U.S. House and Senate. The legislative history surrounding its enactment includes testimony of dozens of witnesses providing firsthand information on the importance of assistive technology in people's lives as well as the difficulties often encountered in gaining access to needed technology. Congressional findings are summarized in Section 2 of the legislation and include the following statement:

For some individuals with disabilities, assistive technology is a necessity that enables them to engage in or perform many tasks. The provision of assistive technology devices and assistive technology services enables some individuals with disabilities to-- (A) have greater control over their own lives; (B) participate in and contribute more fully to activities in their home, school, and work environments, and in their communities; (C) interact to a greater extent with nondisabled individuals; and (D) otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities [29 USC 2201].

Congress found that resources are lacking that would help people with disabilities obtain and use assistive technology devices and related services. For example, these resources are lacking:

* Sources of payment for assistive devices and services;

* Trained personnel to provide assistive devices and services and to help individuals with disabilities use assistive technology effectively;

* Information about assistive technology for individuals, family members, and professionals working with individuals with disabilities;

* Coordination among public programs and between public and private sector programs; and

* Capacity of both public and private sector programs to provide necessary technology-related assistance [29 USC 2201].

The objectives of the Tech Act were designed to respond to these findings. The primary objective includes the provision of federal assistance to the states for the development of a consumer-responsive statewide program of assistive technology services. Since 1988, 42 states have received funding to develop their statewide programs.

Scope of the Study

This study was conducted in response to the congressional mandate in Title II of the Tech Act. Title II mandated a study on the financing of assistive technology to be conducted by the NCD that will produce recommendations to the Congress and the President concerning the following:

* Policies, practices, and procedures of private entities (including insurers) that facilitate or impede the acquisition and financing of or payment for assistive technology devices and assistive technology services for individuals with disabilities; and,

* Alternative strategies for acquiring or paying for assistive technology devices and assistive technology services [29 USC 2231].

This report is the outcome of 19 months of research. It consists of a review of the literature on the financing of assistive technology, six days of public forums with more than 100 witnesses from across the nation providing testimony, a review of policy and practice for 26 federal laws affecting individuals with disabilities, an analysis of state-level policies affecting financing of assistive technology, an examination of the benefits and costs of assistive technology with the assistance of individuals with disabilities who are users of technology, a review of alternative funding practices, and an analysis of private insurance and the financing of assistive technology (see Appendix B for a list of all forum witnesses).

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DEFINITION OF ASSISTIVE TECHNOLOGY DEVICES AND SERVICES

For the purpose of this study, the definition of assistive technology devices and services is the definition incorporated in the Tech Act.

Assistive technology device: 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 functional capabilities of individuals with disabilities.

Assistive technology service: any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device. Such term includes:

(A) the evaluation of the needs of an individual with a disability, including a functional evaluation of the individual in the individual's customary environment;

(B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by individuals with disabilities;

(C) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices;

(D) coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs;

(E) training or technical assistance for an individual with disabilities, or, where appropriate, the family of an individual with disabilities; and

(F) training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of individuals with disabilities.

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A NEW DEFINITION OF DISABILITY

A New Paradigm

Historically, public policy has defined disability largely from a medical and clinical perspective, focusing on the causes and effects of congenital conditions, disease, and injury. Today the focus is instead on function: how specific disabilities change the manner in which the activities of life are performed.

A noted disability demographer, Mitchell P. LaPlante, describes disability as a limitation, caused by one or more chronic, physical, or mental health conditions, in performing activities that people of a particular age are generally expected to be able to perform. Disability in basic life activities, while highly associated with aging, begins at birth and occurs throughout the life span. LaPlante describes the various tools used to measure functioning:

Measures of functioning in basic life activities include ability to eat, control excretory function, transfer, toilet, dress, and bathe--the well-known activities of daily living (ADLs) and may also include ambulation and the ability to walk or go outside. The Index of Activities of Daily Living has been demonstrated a valid and reliable assessment tool for elderly and nonelderly persons with chronic conditions and for institutionalized as well as noninstitutionalized persons. Measures of functioning in activities instrumental to independent living include ability to use the telephone, shop for groceries, prepare meals, do household chores, do laundry, use transportation, take medications, and handle money matters. (LaPlante, 1991a)

Traditionally, "major life activities" are defined as social roles such as going to school, working, or performing instrumental activities of daily living such as household chores or shopping. However, for the purposes of this study, traditional performance-based definitions of disability simply do not offer enough detail to answer important questions about effective functioning within these life areas. A better understanding of the functional needs of the individual with a disability may be achieved through questions such as the following:

* What barriers are there in the environments of school, work, recreation, home, community, travel, or daily life that prevent an individual from full participation?

* Can these barriers be ameliorated, bypassed or eliminated by assistive technology devices and related services?

Barriers to performing actions exist everywhere. Understanding barriers is the last step in defining whether a disability exists for a specific individual at a particular moment in time (World Institute on Disability, 1991). Indeed, an exact definition of disability is less important than acceptance of the principle that severity of disability is best understood within an environmental context. The Institute of Medicine endorses this approach, describing disability in the following manner:

...the expression of a physical or mental limitation in a social context-- the gap between a person's capabilities and the demands of the environment. People with such functional limitations are not inherently disabled, that is, incapable of carrying out their personal, familial, and social responsibilities. It is this interaction of their physical or mental limitations with social and environmental factors that determines whether they have a disability. (Institute of Medicine, 1991)

As Susan Daniels, associate commissioner of the Administration on Developmental Disabilities, has discussed in "The Meaning of Disability: Evolving Concepts," the use of technology in the lives of persons with disabilities is bringing about a "paradigm shift" that is redefining the meaning of disability in our culture (Daniels, Fall 1990). The old perception of people with disabilities in society, which she refers to as the "individual defect" paradigm, is based upon the assumption that disability is a physical or mental difference that is not desirable. Under this individual deficit paradigm, people with disabilities are regarded as in need of special care or services that will cure them or else help them to adjust to their "affliction."

Daniels calls the new perspective the "technology/ecology" paradigm. Under this paradigm, disability is defined as a "lack of fit between a person's goals, his or her capabilities, and environmental resources." Pointing out that we all are dependent on technology, Daniels observes that a broken wheel has a similar effect on a nondisabled truck driver, a bus passenger who is blind, and an athlete who uses a wheelchair. Attention must not be placed to the "patient" or "client" who is disabled, but on improving "the fit" between the person and the environment.

Recent trends in disability public policy appear to support this transformed philosophy of disability. This is particularly evidenced in, among others, the ADA and the Tech Act. The language of the Tech Act acknowledges the value of technology for persons with disabilities, enabling them to:

* Have greater control of their lives;

* Participate in and contribute more fully to activities in their home, school, and work environments;

* Interact to a greater extent with nondisabled individuals; and

* Otherwise benefit from opportunities that are taken for granted by individuals who do not have disabilities (Section 2: Findings, 29 USC 2201).

The ADA focuses on eliminating barriers to full participation by persons with disabilities in American life. Its goal is not to "cure" the person with a disability but to cure the problems in the environment that serve as barriers to participation. It provides many of the same legal remedies that are available to traditional civil rights constituencies. For the goals of this law to be accomplished, many segments of American society will need to make changes, either in their policies or in their premises.

This clear trend in public policy as it affects persons with disabilities is the result of advocacy. People with disabilities and parents of children with disabilities are strong supporters of the use of technology because of the dramatic results it has made in their own lives. It is no great surprise that as people with disabilities have become more involved in public policy, either as advocates or as policymakers, access to technology has emerged as a high priority (World Institute on Disability, 1991).

Assistive technology devices and services are the keys to improving the fit between individuals and their environments. According to the World Institute on Disability, in discussing the assistive technology and related services needs of persons with disabilities, it is important to recognize the following basic principles:

The first is that people with disabilities are as diverse as the human population; thus, most generalizations based upon particular types of disabilities are accompanied by numerous exceptions. Within any particular type of disability there are many differences that affect an individual's ability to function and adapt: age at onset, severity, availability of training and rehabilitation, degree of support from family and friends, cultural attitudes toward disability, and other factors. There is no escape from the fact that people with disabilities are individuals who approach life with different histories, attitudes and resources. Two people can have the same functional limitation and yet require completely different services or types of assistive technology.

A second important concept is that people with disabilities should be regarded as problem solvers. Unfortunately, the history of people with disabilities in the U.S. and elsewhere has been, in large part, one of paternalism. Entire professions of "experts" have emerged who have obtained degrees, and also taken control over basic life decisions away from their clients. However, recent trends have demonstrated that, given the proper tools, people with many different types of disabilities can devise creative approaches to eradicate barriers that had stumped the so-called experts. (World Institute on Disability, 1991)

Demographics of Disability

The promise of legislation such as the Tech Act and the ADA can be realized only when the public and private sectors have consistent and functional demographic data upon which to base policy and practical business decisions. The effective design, production, and distribution of products and services usable by individuals with functional limitations is currently restricted because specific data on how people use their physical, sensory, and cognitive capacities are not clearly understood and are largely undocumented. In addition, most researchers who focus on statistics relating to persons with disabilities generally utilize a medical or health care perspective.

The most widely quoted data on disability are those derived from the National Health Interview Surveys (NHIS) conducted by the National Center for Health Statistics (NCHS). Other sources, less frequently cited, include "The Survey of Income and Program Participation" (SIPP), documentation of children with disabilities emanating from the special education field, states' attempts to count individuals with particular "impairments" such as blindness and severe visual impairment, and the International Center on Disability Survey, conducted by Louis Harris and Associates, Inc., at the request of the NCD. As one might suspect, methodologies differ, data sets are dissimilar and results, predictably, are not comparable. However, there are some indicators that may help establish a baseline with which to work (World Institute on Disability, 1991).

In general, approximately 14 percent of the United States population report a limitation relative to one or more "major life activities" such as working or going to school. Rates are higher for families with lower annual incomes and for certain racial and ethnic groups such as African Americans, Latin Americans, and Native Americans. Prevalence varies little between male and female, except in older age groups. Age, on the other hand, is strongly linked to functional limitations. Limitations in seeing and hearing show higher prevalence rates within older age groups. Certain limitations in moving also increase with age. Memory limitations are more apparent among elderly individuals (World Institute on Disability, 1991). In addition, the Institute of Medicine reports the following statistics:

* About 35 million people (one in every seven) have disabling conditions that interfere with their life activities.

* More that 9 million people have physical or mental conditions that keep them from being able to work, attend school, or maintain a household.

* More than half of the four-year increase in life expectancy between 1970 and 1987 is accounted for by time spent in activity limitations.

* Disabilities are disproportionately represented among minorities, the elderly, and lower socioeconomic populations.

* Of the current 75-year life expectancy, a newborn can be expected to experience an average of 13 years with an activity limitation.

* Annual disability-related costs to the nation total more than $170 billion (Institute of Medicine, 1991).

The chance of having an activity limitation rises with increasing age. Among noninstitutionalized Americans 65 and over, 37 percent (10.6 million individuals) report some limitation in activity as compared to 11 percent of people under 65 (22.5 million) (LaPlante, 1991b). The incidence and severity of disability increases dramatically with age. Forty-five percent of people age 65-69 report functional limitations and 72.5 percent of people over age 75 have functional limitations (Kraus and Stoddard, 1989).

Having a disability is more frequently reported among low income groups. About 20 percent of people under 65 who earn less than $10,000 annually report having disabilities as compared to only 7 to 8 percent of people earning at least $30,000 per year (Robert Wood Johnson Foundation, 1991).

For the purposes of this study, individuals with disabilities of all ages, from infants through older Americans, may have an identified need for access to assistive technology devices and services. Their needs in terms of funding are common throughout their entire life span. The findings and recommendations of this report, therefore, transcend age and type of disability.

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DEFINING THE PROBLEM

With the passage of the Tech Act, children, youth, and adults with disabilities and their families and advocates have an expanding set of expectations that assistive technology devices and services will be more available, accessible, and responsive to consumer needs. In every state, consumers, parents, and professionals are still learning about and refining "best practices" in the delivery of technology-related assistance. There is no single definitive model or exemplary program that can or should be replicated as states attempt to meet their new mandate requiring a statewide, consumer-responsive system of technology service delivery (U.S. Senate, 1988).

Increased awareness of what is possible and the delivery of services across disciplines will enable individuals with disabilities to be part of the decision-making team that identifies the most appropriate technology to make a difference in their lives. Assistive technology is a means to increased opportunity rather than an end in itself. An adaptive switch to activate a toy is a means to more independent play, to gaining an understanding of cause and effect, and to expanded social interaction with other children and family members (Winter, 1990). An adaptive keyboard, a computer, and an augmentative communication device are a means to compete in the work force, express one's thoughts and desires, or learn in school. Through experience we have learned that assistive technology is much more than an adaptive device or special equipment. Application of assistive technology involves awareness, assessment, identification of appropriate solutions, training, practice, skilled professionals from multiple disciplines, follow-up support over time, and maintenance. Only when each of these is applied successfully does assistive technology meet its full potential--the empowerment and increased independence of individuals with disabilities.

What makes assistive technology devices and services possible on an individual level, on a local service agency level, and on a systems-wide basis? The obvious answer is funding. All decisions about access to assistive technologies relate to resource allocation. What is not so obvious is where to go to secure funding and how to deal with the multiple options within public programs and the private sector.

There is no single solution to solving the assistive technology funding problems across all states and local communities. The challenge is to clearly identify the entry points for a particular funding source, bridges to other funding options, and ways to avoid detours and stop signs that delay or deny reimbursement of assistive technology. Unlike the typical road map, negotiating existing and emerging funding streams will require frequent updating as efforts are made collectively to change regulations, amend state plans, refine interagency agreements, develop new policies and procedures, and revise day-to-day practices as they affect the individual technology user. To develop a comprehensive road map will require the involvement of all potential stakeholders, including individuals with disabilities, parents, providers, professionals, technology manufacturers and dealers, insurers, and federal and state agency officials.

The Council is committed to the challenge of ensuring that children, youth, and adults with disabilities, as well as their families and advocates, have information about, access to, and financing for the necessary assessment, choices, purchases, training, and long-term support across the full range of assistive technology devices and services. It is the Council's goal to move increasingly closer to full independence, productivity, and integration of people with disabilities into the mainstream of society and community life.

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STATEMENT OF FINDINGS

The findings that follow are based on 19 months of research on the current state of funding of assistive technology to benefit persons with disabilities and their families nationwide. In developing these findings, the Council analyzed testimony presented by more than 100 witnesses in six days of public hearings, reviewed available literature on the financing of assistive technology, conducted an in-depth examination of funding practices at the federal and state level, and examined from a cost-benefit analysis the impact of technology on the lives of 130 children and adults with disabilities.

Several overarching issues were identified and validated across the body of research undertaken, as the diagram illustrates. All decisions about access to assistive technology for a child or adult with a disability involve more than funding. Although ultimately all decisions are about resource allocation, there is an interdependence between user and provider information awareness, the capacity of the service delivery system to respond in a timely way to individual needs, and access to appropriate assistive technology.

[Chart not available]

There are costs associated with a national system of information awareness to reach all potential users of assistive technology. There are costs associated with the development of a consumer-responsive service delivery system with the capacity to reach all potential users of assistive technology. There are also the obvious costs of purchasing assistive technology devices and support services in response to individual needs that continue to change over time. However, there are also significant costs to individuals and society of not making technology available to individuals with disabilities.

Who should bear the costs of assistive technology services and devices? There is no single response that will prove to be effective for all circumstances. There are instead a combination of strategies or approaches that build on the success of current public policy, public-private sector partnerships, selected state experience, and legal precedents to create a vision of an accessible America. Technology plays a critical role in these approaches by changing the way individuals with disabilities interact with their social and physical environments.

The research of the Council has been reviewed, analyzed, and synthesized into a set of 12 major findings. The next section of this report describes and reviews these key findings.

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RESEARCH FINDINGS

This study resulted in 12 distinct findings. These findings are summarized below. Following the summary, a discussion of each finding is provided.

Finding 1: Information Awareness and Coordination

Finding 2: Inconsistent Standard of Need to Justify Funding Across Public Programs

There is no consistent standard of need to justify funding for assistive technology services and devices across public programs.

Finding 3: Awareness and Enforcement of Existing Rights and Entitlements

There is a paucity of expertise in applying rights' protections to secure individuals' entitlements to assistive technology. Parents, providers, and individuals with disabilities are uninformed about their rights under the law. There has been only a limited effort at the state and federal levels to monitor and enforce the right to, or requirements for, expanding assistive technology access for children and adults with disabilities.

Finding 4: Health Care Funding of Assistive Technology

Finding 5: Coordination of Services and Funding

Information presented to the Council strongly indicates a continued and widespread lack of cooperation and coordination between and within various funding agencies.

Finding 6: Monitoring the Use of Assistive Technology

There is no national database or legislative mandate that calls for the routine collection of data regarding the use of assistive technology or the collection of data regarding financing methods through federal programs for assistive technology available to individuals with disabilities. There is no agreed-upon classification system at the federal or state level to distinguish different types of technology-related assistance for the collection and analysis of data on service delivery and funding patterns and trends.

Finding 7: Consumer Choice and Control

Emphasis on individual choice in, and control of, assistive technology services and funding is conspicuously lacking in most programs.

Finding 8: Funding for Support Services

Once individuals with disabilities obtain needed technology, little attention and funding support are given to training and ongoing assistance and maintenance needed to maximize benefits to the user.

Finding 9: Gaps in Access for Specific Populations

There are significant groups of individuals with disabilities who remain unserved or underserved by existing public and private programs that have financing available for assistive technology.

Finding 10: Availability of Funding Resources

There is no system, public or private, uniquely devoted to the funding and financing of assistive technology to respond to the full range of unmet needs. At best, assistive technology and related services funding are part of a menu of choices that must be made in the allocation of limited resources in multiple public and private service delivery systems. (See Table 1, "Assistive Technology Financing Options.")

Finding 11: Impact and Benefits of Assistive Technology

Preliminary study results from a sample of persons with disabilities in seven states from four age groups document the impact and benefits as compared to costs of different kinds of technology-related assistance. Expanded documentation of the benefits of use of assistive technology should favorably influence resource allocation decisions at the national, state, and local levels.

Finding 12: Funding Solutions

There is no one answer to the complex problem of assistive technology funding for persons with disabilities of all ages nationwide. The Council has identified seven distinct successful approaches or strategies that can be refined and expanded to continue to enhance funding access to assistive technology for Americans with disabilities.

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Table 1

ASSISTIVE TECHNOLOGY FINANCING OPTIONS

PUBLIC PROGRAMS

Medicare

Medicaid

* Required and Optional Services

* Intermediate Care Facilities for Persons Who Are Mentally Retarded (ICFs/MR)

* Early and Periodic Screening, Diagnosis and Treatment (EPSDT)

* Section 2176 Home and Community Based (HCB) Waivers

* Community-supported Living Arrangements

Maternal and Child Health

* Maternal and Child Health Block Grant

* Children with Special Health Care Needs

* Special Projects of Regional and National Significance (SPRANS)

Education

* Individuals with Disabilities Education Act (IDEA) State Grants (Part B)

* IDEA: Programs for Infants and Toddlers with Disabilities and Their Families (Part H)

* State-operated Programs (89-313)

* Vocational Education

* Head Start

Vocational Rehabilitation

* State Grants

* Supported Employment

* Independent Living Parts A, B, and C

Social Security Benefits

* Title II: Social Security Disability Insurance (SSDI)

* Title XVI: Supplemental Security Income (SSI)

* Work Incentive Programs

Developmental Disability Programs

Department of Veterans Affairs Programs

Older Americans Act Programs

ALTERNATIVE FINANCING

* Revolving Loan Fund

* Lending Library

* Discount Program

* Low-interest Loans

* Private Foundations

* Service Clubs

* Special State Appropriations

* State Bond Issues

* Employee Accommodations Program

* Equipment Loan Program

* Corporate-sponsored Loans

* Charitable Organizations

U.S. TAX CODE

* Medical Care Expense Deduction

* Business Deductions

* Employee Business Deductions

* ADA Credit for Small Business

* Credit for Architectural and Transportation Barrier Removal

* Targeted Jobs Tax Credit

* Charitable Contributions Deduction

PRIVATE HEALTH INSURANCE

* Health Insurance

* Worker's Compensation

* Casualty Insurance

* Disability Insurance

CIVIL RIGHTS

* The Americans with Disabilities Act

* Rehabilitation Act

* Section 504

UNIVERSAL ACCESS

* Rehabilitation Act, Section 508

* Decoder Circuitry Act

TELECOMMUNICATIONS

* Telecommunications for the Disabled Act of 1982

* Telecommunications Accessibility Enhancement Act of 1988

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STATEMENT OF RESEARCH FINDINGS

Finding 1: Information Awareness and Coordination

Information on assistive technology devices and services is difficult to find and often inconsistent from source to source. Information dissemination is fragmented and uncoordinated. The barrier of awareness precedes questions of technology funding and thus denies individuals with disabilities an effective means to increase independence, productivity, and integration.

Current, reliable, and easy-to-understand information remains out of reach for many persons with disabilities and their family members. The information needs of current and potential technology users are multiple in scope. They include the following:

1. Information about the full range of assistive technology devices and related services and their potential in different environments to respond to the functional needs of varied users;

2. Information that compares and contrasts device effectiveness, affordability, operability, and dependability;

3. Information on reachable distribution points to access identified assistive technology devices and related services (vendors, nonprofit services providers, state and local public agencies);

4. Information on training support options;

5. Information on appropriate assessment approaches and the availability of qualified individuals or teams in a potential user's local area or state;

6. Information on available maintenance and repair points in a potential user's local area or state;

7. Information on funding options available through public or private sources; and

8. Information about guaranteed rights to assistive technology through public (federal or state) entitlements.

These awareness and specific information areas must also be targeted to respond to the needs of other important audiences such as teachers, therapists, administrators, funding/claim agents and decision makers, employers, medical and rehabilitation professionals, and the general public.

Tom Owens of Portsmouth, New Hampshire, in his testimony before the Council, illustrated the need to increase the assistive technology knowledge base of all service providers when he stated,

Many physicians don't know what is available for me, "the consumer." There have been several occasions where I have found it myself and requested of the physician certain adaptations necessary for my wheelchair. He had no idea these were available and needed assistance in how to write up the prescription. The potential is limitless as to what adaptive equipment could be made available but educating the insurance companies and the physicians is necessary to get the full potential.

The experience of a southern Maine school-age child with cerebral palsy demonstrates the lengths families must go to justify the need and increase the awareness among providers of the benefits of assistive technology:

This junior high boy's family and teacher believed that the child can benefit from a power chair. The family's primary care physician has repeatedly refused to prescribe a power chair. So the teacher videotaped a field trip to a local art museum. In one segment, the child was "pushed" through the museum by an aide; in the other, the young boy "toured" the museum solo, in a borrowed chair. The dramatic difference portrayed in the videotape convinced the child's physician to order the power chair.

The problem of inadequate knowledge of appropriate technology solutions to respond to individualized needs is compounded by the rapidity with which the assistive technology field is growing. There is nowhere a family can go to try out different assistive technology devices before purchasing begins. A frustrated young father, Martin Sweeney of Los Angeles, California, painfully explained this point to the Council:

Assistive technology represented hope, opportunity, communication, and who knew what else [for daughter Eva]. I started asking questions. I asked the staff at UCLA and got some information. Then I went to my local computer store and got next to none. When I tried to explain my situation, the poor salesman looked at me like I was from another planet. It was then that I realized that there was nobody out there--at least no one I know--who could help answer the kind of questions I needed answered.

I bought a few devices and programs only to discover at home with Eva the "bug" or "glitch" that put it just beyond her reach. Some of the possibilities were too expensive to risk a trial run. This trial-and-error approach lasted the better part of a year.

Batavia and Hammer have identified criteria used by individuals with disabilities to evaluate their satisfaction with assistive devices (1989). Although the relative ranking of 17 criteria depended on the user's disability and the type of technology under evaluation, overall the 4 most important criteria across all disabilities were effectiveness, affordability, operability, and dependability. Unfortunately, there is no system that exists on a national level to enable potential technology users to gain information about expressed satisfaction with particular technology.

Most individuals with disabilities and families with children with disabilities cannot afford to purchase the assistive technology devices and services they need. The potential user is dependent on third-party funding support, both public and private. The availability of, and access to, information that is reliable, easy to understand, andresponsive to the needs of users does not guarantee funding and access. But clearly information awareness is an important foundation for the creation of a seamless system of technology assistance for persons with disabilities.

The passage of the Tech Act and the funding of 42 states under the Act has resulted in improved awareness of, and access to, information. However, information management, especially in awareness and dissemination activities, remains fragmented and uncoordinated.

There are a number of electronic databases that are publicly and privately funded (such as Apple Link and Hyper-ABLEDATA). Many of the Tech Act states have established toll-free lines to respond to information requests and to make information on electronic databases more accessible to potential technology users. However, there are no minimum performance measures to evaluate and guide information dissemination efforts in the 42 states funded under the Act.

There are more than a dozen federal programs that authorize funding for assistive technology devices and services at the discretion of the state administering agency. There is a critical need to provide information and training to individuals with disabilities and their families on how to successfully influence resource allocation decisions by public programs. There is a similarly critical need to provide information and training on how to successfully influence the reimbursement or prior approval decisions of private health insurers to increase access to assistive technology.

Finding 2: Inconsistent Standard of Need To Justify Funding

Across Public Programs

There is no consistent standard of need to justify funding for assistive technology services and devices across public programs.

Congressional mandates over the last 25 years have consistently expanded coverage, benefits, and rights for persons with disabilities. Each federal mandate has responded to a particular area of need: medical assistance, early intervention, education, rehabilitation, civil rights. Some of the policy goals of the programs authorized by Congress include the following:

* To assure that all children with disabilities have available a free appropriate public education (IDEA).

* To develop and implement a comprehensive program of rehabilitation and independent living for individuals with disabilities to maximize their employability, independence, and integration into the workplace and the community (Rehabilitation Act).

* To provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities (ADA).

Assistive technology is proving to be a powerful means for individuals with disabilities to achieve the outcomes of these and other policy goals from more than 20 programs authorized by Congress (see Supplementary Reading, Report 2).

Unfortunately, a clear concept of entitlement to assistive technology is missing from this patchwork of funding streams. Instead, coverage is left to the authority of individual programs such as education, employment, independent living, and health care. Disability as a functional issue and the importance of technology in addressing functional needs have not been addressed in a comprehensive manner.

Witnesses at each of the public forums explained how the same device or piece of equipment would be defined in very different ways to meet varying standards of needs required to justify funding by different programs. The different rules for payment are made more difficult by differences in interpretation of funding justification from the same public agency in different parts of a state and from state to state.

On a more positive note, the existence of more than 20 defined categorical public programs for individuals with disabilities helps expand the range of funding options that may respond to individuals' technology needs. Whether the public program has a distinct orientation to education, employment, independent living, or income maintenance, the need for assistive technology can be shaped to justify funding.

There are choices, but no guarantees. The choices, as described by multiple witnesses at public forums held by the Council, are real only for those individuals who are more aware, more educated, and more informed about how to document and justify the need for technology. Mary Ann Glicksman of Santa Monica, California, described the anxiety that she and so many families experience in their effort to find funding for much-needed technology:

Funding probably could be found for everything, but it requires a lot of knowledge of many systems: social service, medical, government, community. It also requires time, and most of all a tenacity and almost a girding for battle to face all the agencies and programs requiring information and justification from you. My heart pounds before I make the initial phone call, whether it be for an IEP [individualized education program] addendum, an assessment appointment, a doctor's appointment, or to the insurance company.

Despite recent efforts to amend and improve selected public program requirements to fund assistive technology, the varying standards of need remain a significant barrier for potential and current technology users with disabilities (see Appendix C, "Recent Public Policy Experience in the Area of Assistive Technology").

Finding 3: Awareness and Enforcement of Existing Rights and Entitlements

There is a paucity of expertise in applying civil and constitutional rights protections to secure individuals' entitlements to assistive technology. Parents, providers, and individuals with disabilities are uninformed about their rights under the law. There has been only a limited effort at the state and federal levels to monitor and enforce the right to, or requirements for, expanding assistive technology access for children and adults with disabilities.

In recent years, Congress and the Executive Branch of the federal government have clarified or expanded the rights of individuals with disabilities to access assistive technology. Table 2, on page 37, summarizes 17 such changes in public policy that have occurred since 1986. Unfortunately, most parents, providers, and individuals with disabilities remain unaware of many of these expanded benefits and rights.

This general lack of awareness and understanding of existing potential benefits and rights extends to federally funded advocacy agencies such as Client Assistance Programs (CAPs) authorized under the Rehabilitation Act and Protection and Advocacy Agencies (P&As) authorized under the Developmental Disabilities Assistance and Bill of Rights Act. The body of case law involving the protection of a right to assistive technology as authorized by IDEA, the Rehabilitation Act, or by Sections of the Social Security Act (Medicaid or Medicare) is almost nonexistent. As the Council heard from witnesses at all three public forums, there are numerous potential cases involving children and adults with disabilities being denied access to assistive technology. Yet there is a paucity of expertise among advocates, attorneys, persons with disabilities and their families, and professionals across disciplines who can effectively weave their way through the complex web of federal regulations regarding eligibility and reimbursement for technology funding. Indeed, the Council was able to identify only 60 experts nationwide on the financing of assistive technology (see Supplementary Reading, Report 8).

In addition, to date there is no clearinghouse of information on a national, regional, or state level that is available to assist individuals with disabilities and their families in effectively navigating public funding streams to gain access to assistive technology. As a result, children with varying disabilities and their families and advocates frequently remain unaware of the right to assistive technology as part of a free appropriate education. Work incentive provisions through the Social Security Program remain underutilized as an assistive technology financing option. These deductions and credits are not well understood by persons with disabilities and their families or by service providers as a benefit that will cover a wide array of assistive technology devices and services.

Criteria on payment decision making are frequently not well defined. There is no system operating on an national basis to transfer precedent-setting decisions within the various public programs in a timely way to other individuals, organizations, and agencies having an interest in protecting the right to assistive technology.

Despite oversight requirements, there has been only a limited effort at the federal and state levels to monitor and enforce the right to, or requirements for, expanding assistive technology access for children and adults with disabilities. The result is weak and variable state implementation of federal policies and requirements.

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Table 2

RECENT PUBLIC POLICY DEVELOPMENTS

1986

Action: Amendments to Rehabilitation Act: added definition, expanded program requirements

Approach: Clarified and expanded program benefit of major public program

1986

Action: Amendment to Rehabilitation Act, Section 508: new guidelines for federal procurement of computers

Approach: Changed procurement practices; impacted manufacturers' expectation of accessible design standards at lower cost

1986

Action: Early intervention: created new entitlement, expanded program benefits

Approach: Established major public program

1986

Action: Social Security Amendments

Approach: Tax sheltering of income to purchase technology

1987

Action: Amendments to Developmental Disabilities Act: expanded program requirements

Approach: New priority within existing public program

1987

Action: Older Americans Act Amendments: created new provision of assistive technology within existing program; defined assistive technology

Approach: Expanded program benefit

1988

Action: Medicaid Amendments: clarified funding options and mandates

Approach: Clarified and expanded existing program benefit

1988

Action: Tech Act: created statewide systems of technology assistance

Approach: Created new funding, new public program

1988

Action: New Telecommunications Access

Approach: Established new Telecommunications Law Device for individuals who are Deaf (TDD) access requirement within federal agencies

1990

Action: ADA: employment, transportation, public accommodations, telecommunications

Approach: New access requirements of private sector; access technology by expanding concept of civil rights

1990

Action: ADA Tax Credit for Small Businesses

Approach: Created tax incentives to expand access to assistive technology

1990

Action: Decoder Circuitry Act: designed standard for televisions

Approach: Required new manufacturer standard for access

1990

Action: Policy Letter Special Education

Approach: Clarified rights under existing major public program

1990

Action: Policy Memo Rehabilitation