Mr. Chairman and members of the Subcommittee on the Handicapped of the Labor and Human Resources Committee, I am John P. Donnelly, Vice President, Public Affairs of the National Multiple Sclerosis Society. I thank the committee for the opportunity to submit testimony on behalf of our 400,000 members. The National Multiple Sclerosis Society commends Senator Kerry for the introduction of S.1586 the "Technology To Educate Children With Handicaps Act." It is our hope, however, that in its deliberations the committee will consider the need to expand the scope of this legislation to include Americans of all ages who are handicapped and would benefit by the establishment of assistive device resource centers in each state. There are an estimated 35 million disabled Americans, including at least 250,000 adults with multiple sclerosis a disabling disease of the central nervous system for which there is no known cause or cure. - In 1986 the National Multiple Sclerosis Society moved in a new direction to supplement our traditional programs of basic and clinical research by providing a means of funding projects aimed at new technologies to help people with MS manage their disease. The intention is to fund projects aimed at improving function and day-to-day life for people with MS in such areas as psychosocial function, assistive devices and symptomatic treatment. It is well recognized that such areas broadly defined in the area of neurorehabilitation must be an essential part of a comprehensive program of multiple sclerosis research. To date the Society has peer reviewed 11 proposals in this new area and funds programs in management of urinary problems in MS, treatment of spasticity, and improvement of cognitive function. The program is very new and we are confident that once the word gets out that such a program exists we will receive considerably more demand for funds from physicians, biomedical engineers, neuropsychologists and others interested in the management and rehabilitation of the handicapped. As a side light, at a recent meeting of the American Academy of Neurology, a special session in neurorehabilitation drew attention to the fact that physicians not traditionally involved with such matters are becoming increasingly aware of the need for assistive devices and technology for disabled Americans. Since 1946 the National Multiple Sclerosis Society has been dedicated to support of research aimed at understanding more about MS and developing a means to prevent, arrest or cure the disease. Traditionally this research has been in the area of basic biomedical research and clinical studies to develop new therapies for MS. To date the Society has spent nearly $120 million and is currently allocating $7.6 million dollars annually on such research. While we recognize the importance and the need for the development of patient-management technology, resources of the Society are necessarily limited and many demands are made on us. We believe that expanding the scope of Senator Kerry's bill to include service to all people with handicaps will do much to improve the productive life style and independent living not only of people with multiple sclerosis but all Americans with disabilities. 2. Association for the Advancement of Rehabilitation Technology 3. The Urgent Need for Quality Assurance 4. The Need for a National Study on Certification 5. The Need for Training/Personnel Preparation 6. Standards for Rehabilitation Products and Procedures a. Overview of Product Standards b. Standards for Adaptive Devices in Modified Vans c. Standards for wheelchairs 7. Recommended Federal Government's Role in Development of Standards 8. Conclusion INTRODUCTION RESNA, the Association for the Advancement of Rehabilitation Technology, is pleased to provide the Subcommittee on the Handicapped with testimony concerning assistive technology for people with disabilities. THE ASSOCIATION FOR THE ADVANCEMENT OF REHABILITATION TECHNOLOGY Our association is a national, multidisciplinary association of rehabilitation professionals, engineers, technologists and consumers whose common interests lie in the development and the delivery of assistive technology which will meet the needs of citizens with functional limitations. RESNA brings together individuals whose credentials, activities, and interests vary widely, but all of whom are committed to designing, developing and evaluating technology, and to making the service delivery process work. THE NEED FOR EFFECTIVE TECHNOLOGY DELIVERY SYSTEMS RESNA commends this committee's efforts to include specific provisions for assistive technology services in the Rehabilitation Act and the Older Americans Act, and the committee's work in enhancing financial resources for technology utilization. We applaud your interest in developing legislation that would enhance the ability of the states to develop effective programs for delivering assistive technology, both the devices and the related support services systems. As we stated in testimony (attached) last week before the Subcommittee on Select Education of the House Committee on Education and Labor: "Advancing technology is providing enhanced opportunities for increasing independence and life fulfillment for people with disabilities.....The major barriers that prevent access to these new technologies for the vast majority are due to the total absence of, or fragmentation of, the delivery system and its associated payment structure." THE URGENT NEED FOR QUALITY ASSURANCE MECHANISMS Our colleagues will be presenting considerable testimony during the hearings before you on May 19 and 20, about the benefits of appropriately applied technological support and about the problems in the delivery and payment systems. RESNA's attached House testimony also addresses these issues. In its statement today, RESNA would like to target its testimony on the issue we consider to be of singular critical importance: Quality Assurance. In rehabilitation technology service delivery, quality assurance involves two basic areas: (1) the quality of service rendered measured in terms of personnel (certification) and facilities (program standards/accreditation); (2) the quality of the equipment safety and performance (standards). measured in terms of device why is quality assurance so urgently needed? Because consumers have a right to a baseline quality in the level of services and devices they use. However, although this reason is very important, it may not strike you as "urgent". The urgency appears at the most basic economic level. Repeatedly you will hear in testimony of the importance of increasing the availability of funding for assistive technology. Quality assurance mechanisms are urgently needed because they are intrinsically tied to third party reimbursement. This trend is increasing rapidly. Efforts to secure adequate reimbursement of rehabilitation technology and related services will be blocked unless we have some acceptable form of certification in place. In 1986, the Electronic Industries Foundation convened a National Task Force on Third Party Payment for Rehabilitation Equipment. The task force cited a variety of problems with third party payment for rehabilitation equipment which, upon reflection, point to this critical need for quality assurance. Five problems in particular warrant reemphasis. 1) There is serious unfamiliarity with available rehabilitation equipment and related services among clinical and payment decisionmakers. This unfamiliarity in many cases translates into either underutilization or inappropriate application of existing technology. Conversely, the more familiar decisionmakers are about equipment and related services, the more capable and confident they become in judging the relative value of each in any given case. 2) There is a significant lack of reliable, objective informa- 3) Payment decisionmaking criteria are not well defined at |