ADDENDUM A REGULATIONS FOR OUT-OF-HOSPITAL DIALYSIS UNITS 1.0 Criteria for Approval 1.1 Applications and Review: 1.1.1. All applications for establishment of out-of-hospital satellite dialysis facilities shall be submitted in accordance with application form and procedures established by the department of health. 1.1.2 All applications shall be subject to the review and recommendation of a multi-disciplinary advisory committee, and the operation of all out-ofhospital satellite dialysis units shall be subject to review by this committee at least annually. 1.1.3 Applications shall clearly document the need for such a satellite unit in relation to patient load, geographic location, and availability of trained personnel. The application shall clearly define the corporate structure, the method of funding, the mechanism for medical supervision of the unit and the mechanism for cost-accounting of the operations of the unit. The application shall be accompanied by a Letter of Agreement between the satellite unit and a hospital in the community which maintains a chronic dialysis unit. 1.2 A satellite dialysis unit shall be operated only in conjunction with a hospital that maintains a chronic dialysis unit. 1.3 The Department shall not approve an original application for establishment of an out-of-hospital satellite dialysis unit without a letter of agreement between the satellite units and the hospital which clearly states that the Board of Trustees or comparable authority, and the Executive Committee of the Medical Staff of the hospital have approved. The Department may with due notice, withdraw its approval of an out-of-hospital dialysis unit with just cause. 2.0 Supervision and operation of services provided in satellite dialysis units 2.1 The satellite dialysis unit shall be under the direction of a physician trained in dialysis techniques who has an appointment at the affiliate hospital and who shall be the director or be responsible to the director of the hospital dialysis unit. This medical director shall be responsible for: 2.1.1. Insuring the proper coordination and functioning of all services. 2.1.2. Developing adequate facilities and supervising the operation and maintenance of equipment and the acquisition of supplies. 2.1.3. Selecting suitable patients for satellite dialysis in accordance with established criteria and with the advice and recommendation of the Advisory Committee. 2.1.4. Training physicians, nurses, and paramedical personnel in dialysis techniques. 2.1.5. Insuring adequate supervision of dialysis. 2.2 The affiliate hospital shall provide for the provision of adequate back-up facilities, such as supportive laboratory and Blood Bank services, and immediate in-patient care in the affiliate hospital for any patient who develops complications or a condition that requires hospital admission or other such services. 2.3 Records and Reports: 2.3.1. Records shall be maintained in a manner acceptable to both the hospital and the department and reports on services provided shall be submitted to the Department as may be required. 2.3.2. Complications of treatment, accidents or untoward incidents regarding patients shall be properly recorded in patient's record and available to the Department upon request. Other significant untoward incidents regarding any aspect of the conduct and operation of the dialysis unit shall be properly recorded in the unit's record. 3.0 Plant Requirements The Physical Plant requirements shall fulfill the minimum standards required for licensure by the Rhode Island Department of Health. 3.1. The Medical Director shall be responsible for ensuring adequate electrical services (including emergency electrical services) and a water supply of known and suitable quality with adequate plumbing facilities for the type of equip ment to be used. 3.2 The dialysis unit shall be separate from other activities of any facility in which the unit may be established, and shall not be located in a thru traffic area. Bed placement shall provide access for the patient, staff, and equipment. There shall be adequate separate provision for the following: 3.2.1 Locker space for patient's belongings. 3.2.2. Toilet facilities for patients, nurses, and visitors. 3.2.3. Equipment, drugs, and general storage space. 3.2.4. Equipment for cleaning and maintenance. 3.2.5. Space and equipment for record keeping and secretarial services. ADDENDUM B Projected Figures Under Garrahy Plan as Attested to by Dr. Schreiner, Chairman NKF $90 million equals 15,000 patients times $6,000 after the first year. Projected Figures Under Present Plans as Attested to by Dr. Schreiner, Chairman NKF Home dialysis.. Satellite unit. Transplants Research and development_. In hospital Total $90 million equals 15,000 patients times $6,000, after first year. $34 million dollars equals 2,000 patients times $17,000. $25 million equals National Kidney Foundation. $15 million equals National Kidney Foundation. $280 million equals 8,000 patients times $35,000. ADDENDUM C In millions $90 34 25 15 280 444 In response to our recent discussion, enclosed please find some projected data for patients in chronic dialysis based on 50 patients per year, 50% transplanted of whom 50% will receive living donors, and 60% on home dialysis. At the end of 6 months there will be 22 in-hospital patients (institutionally dialyzed patients) and 2 patients on home dialysis. At the end of 12 months there will be 33 patients in-hospital dialyses, 6 patients would have been transplanted and 10 patients would be on home dialysis; 21 patients will be on home 79-885 72 pt. 2 11 dialysis. At the end of 24 months there will be 44 patients on institutional dialysis, 21 patients will be on home dialysis; 15.5 living transplants and 10 cadaver transplants. At 36 months there will be 56 institutional dialyzed patients, 24 living transplants, 18 cadaver transplants, 31 patients on home dialysis. In 48 months, 68 patients in-hospital dialysis, 31 living transplants, 24 cadaver transplants, 40 patients on home dialysis. At the end of 60 months there will be 80 patients in-hospital, 37 living transplants, 30 cadaver transplants and 47 people in home dialysis; roughly 50 patients would have died during that time. It should be noted that based on our past year's experience most of these numbers are quite accurate with the exception of the transplantation numbers which are lower than projected. Unless the transplantation numbers keep up with the projections in the program, the number of patients requiring institutional dialysis would go up at a more rapid rate. As I indicated to you, I would be most happy to discuss these numbers in any detail you wish at your convenience. I hope I can be of assistance to you. Sincerely yours, JOSEPH A. CHAZAN, M.D., Director, Division of Renal Diseases. Senator CRANSTON. Our next witness is Harold Russell, Chairman of the President's Committee for the Employment of the Handicapped. STATEMENT OF HAROLD RUSSELL, CHAIRMAN OF THE PRESIDENT'S COMMITTEE FOR THE EMPLOYMENT OF THE HANDICAPPED, ACCOMPANIED BY BERNARD POSNER, DEPUTY ADMINISTRATIVE ASSISTANT Mr. RUSSELL. Thank you, Mr. Chairman. I have with me Mr. Bernard Posner, who is Deputy Administrative Assistant of the President's Committee. I am glad to have the opportunity and privilege of being here today. I would like to make four comments. First, I refer you and members of the committee to section 404, promotion of employment opportunities. I call your attention to the fact that this section calls for the cooperation of the Secretary of Labor and Secretary of Health, Education and Welfare to recommend policies and procedures to the States which would facilitate job placement of handicapped people who have been rehabilitated. It calls upon them to work with the Chairman of the President's Committee to assure maximum utilization of services of the committee and of State and local committees, in promoting job opportunities for the handicapped. These are laudable objectives. During the 17 years this provision has been in effect, however, it has not always worked as effectively as it might have. The reason has been very simple: money. Only 18 States of the Union-less than half-have full-time staff people administering the affairs of Governors' committees on employment of the handicapped. In a majority of the States, Governors' committee activities usually are extra duties, to be attended to when other work permits. In some instances, small amounts of money have been allocated for printing, promotion, travel and administration. In other instances, there isn't even money for these items. To solve the problem of money, we propose that section 404 be changed, to provide for authorization for funding of State committees. The key addition lies in the words: "and shall authorize their respective State agencies to fund staff positions and related expendi tures of State committees on employment of the handicapped. This change is essential to really build opportunities for the handicapped of America. Second, we should like to see an item incorporated into the Vocational Rehabilitation Act which would enable the President's committee to keep pace with the rising load of handicapped persons receiving vocational rehabilitation. This item would eliminate the ceiling authorization of $1 million which now limits the President's committee appropriations. I assure you, removal of the ceiling would not result in a sudden "gold rush" for funds. The President's committee has no intentions of such a rush. The point is, however, that after a quarter of a century of responsible operations, we feel the President's committee has earned the right to be free standing, like virtually all other agencies of Government; it has earned the right to be considered as a mature and responsible Agency; it has earned the right to be trusted to spend its money wisely; it has earned the right not to be treated as though it needs special watching. It has earned the right, in brief, to operate without a ceiling. In the past, every time a pay increase occurred, every time we were called upon to expand our activities to be responsive to national needs, we found that we had to go through a time-consuming legislative process of coming to Congress to ask for an increase in a ceiling which had proved inadequate. We never were denied. Congress always has been most courteous, most responsive to our needs. But this seems to have been an exercise in a waste of valuable time-the time of the Congress even more than the time of the committee. If the ceiling were removed, I assure you that we would exercise the same fiscal prudence, the same careful management of funds, the same squeezing the full value out of every dollar, as we have shown time and time again during the first 25 years of our history. Third, we should like to see a provision in the act for a National Center for the Homebound. Over the years, as I have seen the gains made in building opportunities for the handicapped, I have thought: "yes, but these do not pertain to the homebound." And I have seen gains in rehabilitation, and thought: "yes, but these do not pertain to the homebound." I think it's time the homebound stopped being the "shadow people" of our society. For too many generations, they really have been "out of sight, out of mind." There are more than 2 million of them. They are in dire financial need, most of them. Yet there is every indication that they can become self-sufficient; they can leave the welfare rolls; they can become contributors to, rather than consumers of, American tax revenues. This already has been demonstrated by the federally funded demonstration projects that have attempted to bring them into the Nation's mainstream-yes, even though confined at home. A National Center for the Homebound could demonstrate on a large scale, to every State and every city, that improved techniques of rehabilitation can bring true independence to the homebound. The President's Committee strongly endorses the proposed National Center for the Homebound. It is long overdue. Fourth and finally, we should like to see a provision in the act for a system of Federal payments supplementing the incomes that certain handicapped people in sheltered workshops are able to earn by their own efforts. These, of course, are people whose productivity is so low, because of their disabilities, that they cannot hope to earn anything near the minimum wage. Yet we know we cannot stop there and claim we have done all we can for them. Their expenses of living go on, the same as ours. Their needs for the minimums of life go on, the same as ours. It is time that America recognized their needs, and supplemented their incomes to bring their wages up to existing minimums. These levels, I might point out, are not far from the poverty levels for our country. It is time that America recognized their needs, and supplemented their incomes to bring their wages up to existing minimums. These levels, I might point out, are not far from the poverty levels for our country. Of course, there would have to be safeguards. These handicapped people would have to be in an "employee" status in the workshop, rather than a "trainee" status. They would have to be employed fulltime. Certification would have to be made that they are producing at their highest level of skill and earning power. They would have to be reviewed periodically regarding their potential for outside employment. These, then, are my four suggestions for the Vocational Rehabilitation Amendments-funding of Governors' Committees on Employment of the Handicapped; removal of the ceiling on expenditures of the President's Committee; a National Center for the Homebound: a system of wage supplements for severely handicapped persons in workshops. Thank you for your attention. Senator CRANSTON. Thank you very much. Would you please describe the special funding of your committee? Mr. RUSSELL. Actually our committee is funded by the Congress through appropriations each year. We have a ceiling of $1 million and we are coming close to that ceiling as wage increases go on, as the need for programs expand, as the demands upon our time and money and staff grow greater and greater. The point is that within a short period of time, once again we may have to come to the Congress and ask for a removal of the ceiling or increase in our ceiling so that we can carry on these programs. Senator CRANSTON. What is the relationship of your functions to RSA, and how do your functions relate to those of RSA! Mr. RUSSELL. We operate actually as a separate organization. The President's committee report directly to the President. We cooperate closely with all the agencies that are involved, both public and private, in the field of rehabilitation and employment of the handicapped. We are housed in the Department of Labor for housekeeping purposes, but actually we are a separate organization. Mr. POSNER. We are independent from RSA. RSA rehabilitates the handicapped. Our main mission is to open the doors of business and industry so when they are rehabilitated they find more acceptance in their search for work. |