intervention on medical utilization have suggested that it tends to reduce the need for expensive medical services. Mental health treatment does not necessarily entail the stereotyped long term interaction of a troubled indi-· vidual with a high priced professional. New procedures are being developed that are short term and may be performed by professionals of various kinds at various levels of training and experience. We are encouraged that the thinking of many legislators takes a broad view of the problems of health. Consideration of the health maintenance organization concept is a commendable option to break impasses in the delivery system. We hope that the general health maintenance concept forms a foundation for all health legislation in the interest of both cost and effectiveness. Senator CRANSTON. Our final witness is Harry A. Schweikert, Jr., representing the National Paraplegia Foundation. Mr. Schweikert, we are delighted to have you with us. STATEMENT OF HARRY A. SCHWEIKERT, JR., NATIONAL PARAPLEGIA FOUNDATION AND PARALYZED VETERANS OF AMERICA Mr. SCHWEIKERT. I am pleased to speak on behalf of the National Paraplegia Foundation and the Paralyzed Veterans of America, and all of the paralyzed citizens of this country that these organizations represent. We sincerely appreciate this opportunity to present testimony in support of the improvement and expansion of programs for the disabled of our Nation, with special reference to the spinal cord injured. Mr. Chairman, I earlier submitted a statement for the record, so I am only going to submit some of the highlights of our presentation. Senator CRANSTON. Thank you. Your entire statement will go in the record at the conclusion of your testimony. Mr. SCHWEIKERT. Both organizations I represent support all facets of the bill. There may be some question in the mind of the chairman as to why the Paralyzed Veterans of America supports this bill. I would like to point out to you that while present legislation does provide basic medical care, the rehabilitation aspects of the program are not available to veterans who have suffered spinal-cord injury which is not service-connected. There are a lot of veterans who would be benefited by this bill. We are most enthusiastic about the provisions of H.R. 8395 relating particularly to the spinal-cord injured and other severely disabled. We recognize that the greatest resources of the United States are directed at the afflictions of man which cause the highest mortality rates. And this is as it should be. Yet there are too many of our citizens who are not too far from that terminal state. These are the spinal cord afflicted who have been accumulating for years in back rooms and institutions, waiting for someone to champion their cause. The techniques of modern rehabilitation have not been available to them. They have been shunted aside by a society which didn't have the faith, the desire, or the courage to accept their challenge and rehabilitation personnel who blamed it on a lack of time, a lack of space, and a lack of money. For reasons stated, we most strongly support title III of the bill, which would apply comprehensive rehabilitation services to the very seriously disabled, the goal of which would be to improve substantially the ability of these disabled to live independently and function normally in their families and communities. We are most relieved to see relaxed the restrictive sections regarding full employment as an expected end product. The reassimilation of the disabled individual into a family and community life is the true first step in any whole rehabilitation program. We are extremely happy to see the intent of title IV to establish national centers for the spinal cord injured. It was, admittedly, a dist.net disappointment not to find a particular number of centers which would be created, or any appropriation to cover their costs. If I may be so bold, Mr. Chairman, I must submit that at least 50 such centers would be required to bring the essential basic services to those who so desperately need them. That is one horrendous backlog to catch upon, if it is ever possible. And there is frustration in our ranks that perhaps some of our Legislative Representatives are not aware of what we speak. For instance, there is no spinal cord injury center in the Metropolitan District of Columbia area at which one could observe or inquire. The closest thing to it is Glenn Dale Hospital in Maryland, to which the severely disabled of the District are referred and accumulated, mostly without any promising future. To my knowledge, no spinal cord injury center is planned for the District of Columbia metropolitan area now or in the near future. The basic and primary area of concern for the spinal cord injured is the need for emergency medical care from the onset of their very serious disability. It is unclear as to whether the proposed national spinal cord injury centers would be authorized to furnish this type of care. It would be tragic if these centers were to provide benefits only to those who survive their early injuries. The case for this early care has been well documented by the medical profession. It is well-known that rehabilitation must start at the earliest moment possible if we are to salvage constructive human beings from this greatest of all living wreckage. Such care can only be provided in an experienced center which applies its programs to the whole person. It is this type of center for which the two organizations I represent urgently plead. Good health and a vocation can be all for naught if that healthy, trained individual can't find a home that is accessible and usable, and within his personal economic means. And both home and ability mean nothing if there is no transportation which he can use to seek and maintain employment. Yet these are two of the severest drawbacks that the wheelchair-bound individual faces in trying to maintain himself or his family, and in trying to become a taxpaying member of society. It is hoped that quick implementation of section 413 of the bill, creating a National Commission of Transportation and Housing for the Handicapped, would alleviate the shortages in these areas. We are particularly pleased to see that the Commission will also include representatives from the consumer groups. The proposal of section 410 to establish a National Information and Resource Center for the Handicapped would benefit far more than the disabled themselves. The establishment of a center would go far toward efficiency and economy in Government operation but, more important, it will bring more quickly to the disabled the most newly devised techniques and equipment. Toward this end, it is our hope that, among the duties assigned to the National Information and Resource Center, will be the science of biomedical engineering. It should be the duty of this Center to maintain an up-to-the-minute index of newly developed engineering concepts to technology benefitting the disabled. There is an impressive array of mechanical and electronic systems, spinoffs of the defense and aerospace industries, which could dramatically hasten the physical restoration of the disabled and handicapped. But a tenacious resource is necessary to overcome the great time lag between development and application. Mr. Chairman, that summarized my statement to you. Senator CRANSTON. Thank you very, very much for your very helpful testimony. I would like to ask you first how many spinal cord injur centers do you feel it is feasible to begin in the next fiscal year? Mr. SCHWEIKERT. It is a hard question to answer. The backlog we know is tremendous, but we know in our experience it is not just developing the centers and providing money to establish them. I think there is a great need in the area of personnel who can operate the centers. I would say we need 50 to 100 centers to benefit these people. The big problem we have found, even in our association with Veterans' Administration personnel, is that there just are not enough experienced people to handle the centers. Senator CRANSTON. What do you feel would be the best number of beds to seek to have in each center? Mr. SCHWEIKERT. We have determined between 75 to 100. We have seen centers with larger numbers, but they lose all of their personal application when they are so large. I have been in centers with less, but I think there is some loss of personnel; there is not enough attraction for doctors and other consultants. Senator CRANSTON. Ought there to be satellite clinics in your opinion? Mr. SCHWEIKERT. We believe that there is a chain of care necessary from the acute center which would be at the very top to the smaller sections which would not include surgery and very acute care. Senator CRANSTON. Would you please give us for the record what you feel would be a proper staffing pattern and mix for each such center. Mr. SCHWEIKERT. Sir, we will supply that later for the record. I do not have it. Senator CRANSTON. Yes. Send it to us. I would appreciate it. (The information referred to and subsequently supplied follows:) June 7, 1972 Senator Alan Cranston Subcommittee on Handicapped Workers Dear Senator Cranston: On Friday, June 2, 1972, I had the privilege of presenting to your Subcommittee a statement cosponsored by the National Paraplegia Foundation and the Paralyzed Veterans of America on H.R. 8395, the Rehabilitation Act of 1972. During the question period subsequent to my presentation, you questioned me concerning the position of these organizations on the subject of patient/advocate representation. At that time I indicated that such a concept would be strongly supported by the organizations I represented. I must sincerely apologize for that erroneous statement, and submit this letter in the hope of correcting the falte statement. PVA and NPF are strong advocates of direct consumer representation in those areas of life which directly concern them. This is more critical in matters of medical care and rehabilitation, and particularly with persons afflicted with spinal cord injury. It is our emphatic belief that none can better represent these Deverely disabled better than they can themselves. No nondisabled advocate, no matter how honest his interion, can truly judge the needs and emotions of the paraplegic of uadriplegic empathet1cally or any other way. While we are cenerally classified under spinal cord injury, no two of us are ted to the same degree. While I am certain that the thought of such advocacy may be honestly intended, it is not unrealistic to assume that the interests of a patient could be misrepresented. There is also the embarrassing suspicion that this offer by the professionals could be re tokenism to prevent direct consumer/patient/client involvement. I sincerely hope this correction of our position will set the record straight. Yours very truly, As James Smittkamp Harry A. Schweikert, Jr. |