VIRGIL SMIRNOW ASSOCIATES, Copy of original letter. DEAR : In July of 1969, with the cooperation of the State Rehabilitation Agencies, a baseline measurement was taken of the amount and kind of rehabilitation services being provided to Americans with chronic kidney disease who were receiving artificial kidney treatment. The report of that survey was published and copies were sent to all survey participants. The initial supply of printed copies was quickly consumed, and there have been three additional printings. More than 1000 copies have been distributed to agencies and to interested individuals upon request. Comments disclosed that information of the kind included in the survey report had not been developed previously and was very useful. Now, two years later, a follow-up survey has been recommended by many of those who found the first report of value. The continuing interest of the public and of those individuals and agencies determining public policy makes it critical to obtain current information at this point in time regarding the present magnitude of the problem as well as existing and projected resources for service programs. Accordingly, we solicit your cooperation in responding to the enclosed questionnaire for your State Rehabilitation Agency. When analyzed, a report will emerge which should be of value to State, Federal, and private agencies in their planning, and to legislative bodies. Hopefully, once again new ideas will be presented that other states will want to study and possibly emulate. To achieve these ends, a reply from every State Agency is essential. We trust the response to this resurvey will match the excellent response in the 1969 survey. Copies of the final consolidated report will be made available to you either directly or through the Rehabilitation Services Administration as soon as the report is ready. The questionnaire was constructed with the kind assistance of RSA staff and has been designed to facilitate your replies. May we hope to hear from you within the next week or ten days. Many thanks for your cooperation. JOSEPH G. COLMEN, Ph. D., Community Health Consultants. VIRGIL SMIRNOW ASSOCIATES, Copy of first follow-up. DEAR This is a follow-up letter regarding the 1971 Re-Survey of rehabilitation services to hemodialysis clients. Copies of the original covering letter and the questionnaire are enclosed. The 1969 survey report was received with great interest by social service, community health and medical personnel. These groups are awaiting comparative data from the 1971 Re-Survey, as a basis for evaluating trends and needs, and as a foundation for action programs in connection with hemodialysis patients. Thirty-eight of the State Rehabilitation Agencies already have responded. is one of those from which we have not yet heard. We feel certain that your interest in participating in a current national re-survey will be reflected in your completion of the enclosed questionnaire. May we look forward to your earliest cooperation in forwarding your response? Sincerely yours, JOSEPH G. COLMEN, Ph. D., VIRGIL SMIRNOW ASSOCIATES, Copy of second follow-up. DEAR : In reference to the 1971 National Re-Survey of rehabilitation services to hemodialysis clients, returns are nearly completely is one of the few remaining States from which a completed questionnaire has not been received. Your response in the initial survey contributed substantially to the completeness and quality of the study. We hope that you will give us the benefit of your ite's information so that the 1971 Re-Survey can be as complete as possible. For your convenience, another copy of the questionnaire, the original transmittal letter, and a return envelope are enclosed. Thank you for your cooperation. JOSEPH G. COLMEN, Ph. D., QUESTIONNAIRE REHABILITATION SERVICES, FOR CLIENTS WITH CHRONIC KIDNEY DISEASE (1971 RE-SURVEY) Please respond as fully as possible to the following questions. If more space is needed for your reply, please attach additional pages, cross-referenced to the number of the question being answered. Your assistance is very much appreciated. 1. Is there a provision in the State Plan of your rehabilitation agency for services of any kind for chronic renal patients in need of hemodialysis? Yes. (Please give the exact wording of those provisions in your State Plan specifically relating to such services.) No, but services are being provided to such patients. (Please describe the nature of those services.) No, and no services are provided to such patients. 2. What is your best estimate of the annual State-wide case load of hemodialysis clients for rehabilitation services of any kind? Number: 3. Does your State Rehabilitation Agency expect to establish for the first time services to hemodialysis clients? (Applicable only for those who answered "No" to question #1.) -Yes. When might such services be introduced? Year: No, we have no plans to establish such services for the first time. 4. Does your State Rehabilitation Agency plan to broaden existing services to hemodialysis clients? No. Yes. When might such additional services be introduced? Year: 6. If your Agency provides services to hemodialysis clients, please check which of the following criteria are used in selecting such clients. (Check as many as apply.) -Expectation of employment. -Financial ability of client to continue treatment after conclusion of services. -Emotional stability of client and/or family. -Client is a candidate for transplant. -Availability of assistance in the home. -Age. -Financial need. -Other (Please indicate). 7. In accepting clients for hemodialysis, some State Rehabilitation Agencies require initial referral from physicians or from hospitals or medical centers. Does your Agency accept initial referals from any other source. 8. (a) Is there a separate item in the budget for services to hemodialysis clients? No. (If No, skip to question 9.) Yes (b) What was the actual funding for fiscal year 1971 for services to these clients? $ (c) What is the anticipated funding for fiscal year 1972 for services to these clients? $ 9. What recommendations might you offer-administrative, professional, or financial-in connection with improving extent or quality of services for these clients? Your Name Title Address Many thanks for your cooperation. Please return the questionnaire in the selfaddressed. stamped envelope provided herewith. Copies of the nation-wide an alysis will be distributed to participating Agencies. Mr. BRADEMAS. Off the record. (Discussion off the record.) Mr. BRADEMAS. The committee will resume. We are going to vary the order just one more time. The Chair wants to observe it is just 11, and we have six more witnesses to hear from. Clearly, we are most interested in learning something about a field with which we are not deeply acquainted on the subcommittee, and the Chair hopes we can be very expeditious in consideration of the views of the next witnesses. If Mr. Harmon will be patient one more time, we will hear from Mr. John Kemp, accompanied by Miss Jane Shover and Mrs. Rhoda Gellman, at this time. The Chair would say also to the witnesses that wherever their statements are lengthy, if they would be kind enough to summarize them, the statements will be included in the record and we will have a chance to ask questions. Mr. Kemp, we are pleased to have you with us. Please go right ahead. STATEMENT OF JOHN KEMP, JR., MEMBER, BOARD OF DIRECTORS, NATIONAL EASTER SEAL SOCIETY, CHICAGO, ILL.; ACCOMPANIED BY MISS JANE SHOVER, EXECUTIVE DIRECTOR, AND MRS. RHODA GELLMAN, SPECIAL ASSISTANT, EXTERNAL AFFAIRS AND RESEARCH Mr. KEMP. Mr. Chairman and members of this distinguished committee, I am pleased and more than a bit awed at the privilege of appearing before you. But I am so convinced of the importance of rehabilitation, which I have taken for granted in the 22 years of my life, that I feel it is a personal duty to be here in support of the vocational rehabilitation legislation. Currently I am a first-year law student, a member of the Youth Committee of the President's Committee on Employment of the Handicapped, and a member of the board of directors of the National Easter Seal Society for Crippled Children and Adults. I am also a "congenital quadruple amputee." As one who is sensitive to the great needs of disabled persons and who has experienced the miracle of rehabilitation, I want to assure a similar opportunity to the millions of other handicapped young people and adults, an opportunity that can become a reality through continuing and strengthening the Vocational Rehabilitation Act. In my particular case, rehabilitation, which began at an early age, was under the auspices of private and voluntary agencies in which the National Easter Seal Society played a vital role. Today, I speak as a board member of the largest voluntary health organization serving the physically handicapped-the National Easter Seal Society for Crippled Children and Adults. My comments reflect two perspectives: That of a consumer of rehabilitation and that of an agency delivering services to the physically handicapped at the community level. EASTER SEAL SOCIETY The experience of Easter Seal Societies is directly related to the legislation under consideration. For more than a half century, the National Easter Seal Society's concern has been the rehabilitation of physically disabled persons, whether the disabilities result from accidents, diseases, or congenital defects. Service is extended by our 2,000 affiliated Easter Seal Societies without regard to the cause, the diagnostic label, the age, or the economic status of the physically disabled individual. Clients include those with orthopedic, neuromuscular, communicative and sensory disorders; for example, paraplegia, stroke, arthritis, muscular dystrophy, multiple sclerosis, amputation, cerebral palsy, and speech and hearing disorders. In 1970, we served 378,390 physically handicapped children and adults. Examples of our services are: physical restoration for all age groups including infants; preschool services to ready youngsters for the public school system; camping and recreation for the young and old; training and workshop adjustment services for youth and adults; and information, referral, and followup to help patients and their families locate and make use of available community resources. Other services include transportation in specially equipped vehicles and loan of equipment. Support for this vast network of rehabilitation services comes from bequests, contributions from the public, and fees from individuals and third parties, including Government agencies. PARTNERSHIP PUBLIC AND VOLUNTARY EFFORT Partnership between Government and voluntary agencies is not new to Easter Seals. Government agencies have relied heavily upon the voluntary sector which operates major rehabilitation centers and workshops. Many Easter Seal facilities throughout the country receive fees for services rendered to State vocational rehabilitation |