Testimony on H.R. 8395 It has been a frustrating experience of organizations trying to service the severely disabled, attempting to collect and index the myriad data on the disabled which is so essential to these service programs. It has been suggested that there are some 24 Federal Agencies conducting 88 separate programs for the handicapped. Only one who has tried to wrest information from these agencies knows how closely and jealously they guard that information. 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 he the science of bio-medical engineering. It should be the duty of this center to maintain an un-tothe-minute index of newly developed engineering concepts to technology henefitting the disabled. There is an impressive array of mechanical and electronic systems, spin-offs 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. Finally, we most strongly submit that present programs purporting to provide medical care and rehabilitation for the spinal cord injured fall woefully short in both number and in funding. Whatever the vehicle for the delivery of services to this group, much more money is needed. We urge your generous attention to this matter. I deeply appreciate the time you have given me, 'r. Chairman. Thank you very much. REHABILITATION ACT OF 1972 TUESDAY, JUNE 6, 1972 U.S. SENATE, SUBCOMMITTEE ON THE HANDICAPPED, COMMITTEE ON LABOR AND PUBLIC WELFARE, Washington, D.C. The subcommittee met, pursuant to notice, at 9:30 a.m. in room 4232, New Senate Office Building, Senator Alan Cranston presiding pro tempore. Present: Senators Cranston and Stafford. Committee staff members present: George E. Lawless, professional staff member; Robert R. Humphreys, special counsel; Jonathan R. Steinberg, counsel; and Roy H. Millenson, minority professional staff member. Senator CRANSTON. The hearing will please come to order. This morning we conclude our hearings on H.R. 8395 and bills amending the Vocational Rehabilitation Act. With the assistance of our excellent and highly knowledgeable witnesses, I hope we have built an enlightening and extensive hearing record. We will keep the hearing record open until June 19 for submission of additional views by our witnesses and written statements by those who were unable to appear personally. In addition, I am asking HEW to submit for the record any appropriate comments and reactions to each of the suggestions and recommendations made during our 5 days of hearings pertaining to possible legislation. Finally, I want to thank my good friend, Senator Randolph, the distinguished chairman of this subcommittee, for giving me the opportunity to chair these hearings and to work on the pending legislation. I look forward now to reviewing all of the testimony and submissions from these hearings and to working closely with Senator Randolph, with Senator Williams, chairman of the full committee, with Senators Javits and Stafford, ranking minority members of the full committee and subcommittee, respectively, and with Senator Taft, who introduced the administration bill S. 3368, to work out the best possible legislative approaches to the pervasive problem of providing realistic, comprehensive and accessible rehabilitation services and programs to our Nation's handicapped persons. Our first witness this morning is the Honorable Joseph Garrahy, Lieutenant Governor, State of Rhode Island. I have a statement from Senator Pell, which he would have made had he been present. He asked me to read it in his absence: I regret very much that my official duties as a Senate adviser to the United States delegation at the United Nations Conference on the Human Environment in Stockholm prevents me from participating in the hearing this morning. (1021) I particularly regret not being with you because one of the witnesses is the very able Lieutenant Governor of my own state, the Honorable J. Joseph Garrahy. In two terms as Lieutenant Governor he has distinguished himself by his superb handling of his duties as presiding officer of the Rhode Island Senate and the many other administrative duties of his office. Furthermore, he has been a champion of the important, progressive programs on a state level that are vital if we are to improve the quality of life for all our citzens. Governor Garrahy appears before this subcommittee today to testify on a subject for which I know he has great personal concern. His personal interest in kidney disease stems from the experiences of family and friends. Governor Garrahy is a member of the Exectuive Committee of the New England Regional Kidney Program and he has been instrumental in establishing three kidney disease treatment centers in our state at the Rhode Island Hospital, the Miriam Hospital, and the Veterans Hospital. Mr. Chairman, I am confident he will testify eloquently on the importance of improving and increasing our facilities for treating this very serious affliction. We are glad to have you with us today. STATEMENT OF HON. JOSEPH GARRAHY, LIEUTENANT GOVERNOR, STATE OF RHODE ISLAND Mr. GARRAHY. I am pleased to have the opportunity to appear before the Senate Committee on Labor and Public Welfare, Subcommittee on Handicapped, and present my views regarding the development of an adequate program to provide financial assistance to individuals suffering from chronic end-stage kidney disease. I am particularly grateful to Senator Claiborne Pell for the assistance he and his staff have offered me. First, I would like to say that I am aware of the legislation which has already been introduced with respect to kidney disease and related disorders. I commend these efforts heartily. I am sure you gentlemen are well aware of what constitutes endstage kidney disease and are knowledgeable about the two forms of treatment; kidney transplantation and chronic hemodialysis. It is difficult to pinpoint the exact number of Americans ideally suited for one or the other type of kidney therapy. The National Kidney Foundation estimates that of the 55,000 to 60,000 end-stage kidney disease patients, approximately 25,000 could be successfully treated with one of these life saving procedures. Of these 60 percent or 15,000 could be trained for home dialysis and 40 percent or 10,000 could be maintained in an in-hospital or satellite center. Sophisticated methods of surgery now permit 10,000 new transplants per year according to National Kidney Foundation. Within the four categories of treatment-transplants, home dialysis, satellite treatment, and in-hospital treatment, the costs vary dramatically, while with one possible exception, the quality of care remains constant. The optimal form of therapy is transplantation. Its cost is approximately $8,000 to $20,000 per operation with some continuing expense after the first few months following surgery. Subsequent to surgery, $1,000 per year is needed for drugs and related items. The overall success rate of transplantation is 85 percent. Many patients are not suitable for transplants and will require dialysis as a continuing form of treatment. Today, patients are generally dialyzed either in the hospital or in their home. Let us examine |