Memorandum Date: September 1, 1993 To: Senator Dole From: Alec Vachon tt/ Re: Labor, HHS, Education Appropriation Requests Attached for your review are letters to Senators Harkin and Specter with 3 requests and detailed rationales; below are synopses and additional comments. Although principally of national scope, each has some relevance to Kansas. Next year I expect to approach appropriations more systematically, with a eye to directed requests for Kansas. 1. National Center for Medical Rehabilitation Research/NIH Created by Congress in 1990, first funded in FY 1992, NCMRR provides national leadership in medical rehabilitation. This is important --rehabilitation is a neglected field. The letter requests a $20 million appropriation; after conference NCMRR might receive $16 million. Even this amount would allow only modest growth. N.B.: Given that NCMRR is the future of rehabilitation, I have been encouraging folks in Kansas to develop a relationship with this agency. You sent Director of NCMRR, Dr. Marcus Fuhrer, a note of congratulations on his appointment. Also, at first opportunity, I will visit with you about commissioning a study of the field of medical rehabilitation by the National Academy of Sciences. Such a study would have two purposes: (1) examine the future of medical rehabilitation, in light of increasing prevalence of disability, new technologies, etc.; and (2) how to improve the federal government's efforts, which are currently scattered across a number of agencies -­NASA, National Science Foundation, and National Institute on Disability and Rehabilitation Research in the Department of Education (which functions very poorly), as well as NCMRR. 2. National Workshop on Barriers to Rehabilitation of Patients with End-Stage Renal Disease The National Kidney and Urologic Diseases Advisory Board at NIH will sponsor a workshop in March 1994 to jump start the field of kidney rehabilitation research and practice. Although most people on dialysis are disabled, this field is practically non­existent. Total workshop budget is about $200,000. You ask for no money, only report language urging 4 federal agencies with relevant responsibilities to contribute to workshop funding. In September 1972 you spoke in favor of a Social Security amendment introduced by Senator Hartke providing a unique entitlement to Medicare for people with kidney failure --qualifying such individuals regardless of the usual criteria of age or disability. This was an early --and as it turns out, expensive -­experiment in funding health care for catastrophic illnesses. (In 1991, I interviewed Senator Hartke, and asked him if knowing the cost of dialysis today he would have done anything differently. He replied, "If I knew how many lives I would have saved, I would have done it faster.") Of course, this program was intended to last only until national health insurance was enacted -­then expected to happen within a couple of years but derailed by Nixon's resignation. N.B.: You have been asked to speak at a luncheon during the conference. I am on the program committee organizing the work­shop and will give the opening scientific paper (one of the few professional commitments I retained after joining your office). Also on the committee is Beth Witten, a social worker in Johnson County and Past President of the Council on Nephrology Social Workers of the National Kidney Foundation. 3. Family Friends/National Council on Aging You have requested in past years that the Committee provide funds for the Family Friends program of the National Council on Aging, which trains seniors as volunteers to families with a disabled child. In addition to providing family support, this program may also prevent child abuse --children with disabilities are at higher risk than other children. This year funding ($500,000) is included in President's budget for the first time; the letter merely requests report language supporting that request. Recently, Kansas got its first Family Friends project --in Kansas City. Three seniors volunteers have been trained and matched with a family with a disabled child (1 in Johnson County, 2 in Wyandotte County). I have been promoting this program in Kansas, and hope more projects will be started. UNITED STATES SENATE Washington, DC 20510-1601 BOB DOLE Kansas 141 Senate Hart Building (202) 224-6521 Committees: Agriculture, Nutrition, and Forestry Finance Rules September 1, 1993 (End of Letterhead) The Honorable Arlen Specter Ranking Member Subcommittee on Labor, Health and Human Services, and Education Committee on Appropriations U.S. Senate Washington, D.C. 20510 Dear Arlen: As you consider the Labor, HHS, and Education appropriation bill for 1994, I ask your support for several programs I believe important to people with disabilities and represent top value for our scarce resources. I apologize for the lateness of these requests, but some of these issues were not ripe earlier. 1. HHS: National Center for Medical Rehabilitation Research For NCMRR, located within the National Institute on Child Health and Human Development at NIH, I request a total appropriation of $20 million. This amount would permit this important new program (first funded in 1992) to grow, although still very modestly. The Administration requests $10.6 million, and although House report language is vague (see H.Rpt. 103-156 at 61), I understand it recommends $13.0 million. Even that amount would allow only about $3 million of new projects, as more than $9 million of NCMRR funds are tied up in multi-year or deferred awards. Suggested report language is provided in Attachment A. Rehabilitation is a neglected field. For example, only about half of the nation's medical schools have a Department of Rehabilitation Medicine. And only a very small percentage of medical students receive any training in rehabilitation. Let me also note that despite NIH claims that it funds substantial rehabilitation research in other Institutes, I believe a close examination would find otherwise. 2. HHS: National Workshop on Barriers to Rehabilitation of Patients with Renal Disease The National Kidney and Urologic Diseases Advisory Board at NIH will sponsor a 3-day workshop on rehabilitation of people with kidney failure in Spring 1994. Total workshop budget is about $200,000, which exceeds what is available in the Advisory Board's budget. I ask for no funding, but request that in report language four agencies with relevant responsibilities be urged to contribute to conference funding: National Institute of Diabetes and Digestive and Kidney Diseases, Agency for Health Care Policy and Research, National Institute on Disability and Rehabilitation Research, and Rehabilitation Services Administration. Suggested report language is provided in Attachment B. By way of background, in 1972 Congress created a unique entitlement to Medicare for people with kidney failure --qualifying such individuals regardless of the usual criteria of age or disability. Optimistically, it expected that such individuals could live full lives, although in fact today most people on dialysis are severely disabled. The medical costs of kidney disease are very expensive --for example, dialysis or transplants cost more than 3% of the Medicare budget, although people with kidney failure are only 1/10 of 1% of beneficiaries. Disturbingly, the field of renal rehabilitation is almost non-existent, and at no time in the past 20 years has there been a national meeting devoted to this subject. The workshop is intended to jump start interest in this field. 3. IIBS: Family Friends Demonstration Projects In past years, I have requested the Committee include funds for the Family Friends project of the National Council on Aging under the social services research account of Children and Family Services Programs, to which it has graciously consented. This year the President has included such funding ($500,000) in his budget for the first time, in the Administration on Aging's research, training, and special projects account. I request no funds but simply report language supporting the President's request. Suggested language is provided in Attachment C. As always, I very much appreciate your consideration of my requests. Should you or your staff have any questions regarding these programs, please contact Dr. Alexander Vachon of my staff at 4-8959. Sincerely, BOB DOLE United States Senate BD/rav Attachment A: Report Language Re the National Center for Medical Rehabilitation Research (To be placed under headings as listed) Title II--Department of Health and Human Services National Institutes on Health National Institute on Child Health and Human Development National Center for Medical Rehabilitation Research "The Committee has provided $20.0 million for the National Center on Medical Rehabilitation Research. Given the Center's existing multi-year and deferred funding commitments, the Administration's request would permit less than $1 million in new projects, and the House recommendation only about $3 million. The Committee believes even its recommended appropriation is modest, and the minimum necessary to allow the Center to grow and realize its promise in providing national leadership in medical rehabilitation research and practice." Attachment B: Report Language, Nat'l Workshop on Barriers to Rehabilitation of Patients with Renal Disease (To be placed under headings as listed below) 1. Title II--Department of HHS/NIH/National Institute of Diabetes and Digestive and Kidney Diseases "The Committee notes that the National Kidney and Urologic Diseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Director of NIDDK to contribute funding to this workshop." 2. Title II--Department of HHS/Office of the Assistant Secretary for Health/Agency for Health Care Policy and Research "The Committee notes that the National Kidney and UrologicDiseases Advisory Board will sponsor a workshop on rehabil­itation of people with kidney failure in 1994. This condi­tion is expensive to the nation and neglected in rehabilita­tion research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Administrator of AHCPR to contribute funding to this work­shop." 3. Title III--Department of Education/Rehabilitation Services and Handicapped Research/National Institute on Disability and Rehabilitation Research "The Committee notes that the National Kidney and UrologicDiseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Director of NIDRR to contribute funding to this workshop." 4. Title III--Department of Education/Rehabilitation Services and Disability Research/Rehabilitation Services Administration "The Committee notes that the National Kidney and Urologic Diseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Commissioner of RSA to contribute funding to this workshop." Attachment C: Family Friends (Under headings as listed below) Title II -- Department of Health and Human Services Children and Family Services Programs Administration on Aging Research, training, and special projects "In previous years, the Committee has taken the initiative to provide funds for the Family Friends program of the National Council on Aging in the social services research account of Children and Family Services Programs. The Family Friends program trains volunteer senior citizens as aides to give assistance and support to families with disabled or chronically ill children, thereby providing respite to parents and additional nurturing to such children and helping reduce the cost of their care. The Committee is pleased that in the FY 94 budget request $500,000 has been included for the Family Friends program in the Administration on Aging's research, training, and special projects account." UNITED STATES SENATE Washington, DC 20510-1601 BOB DOLE Kansas 141 Senate Hart Building (202) 224-6521 Committees: Agriculture, Nutrition, and Forestry Finance Rules September 1, 1993 (End of Letterhead) The Honorable Tom Harkin Chairman Subcommittee on Labor, Health and Human Services, and Education Committee on Appropriations U.S. Senate Washington, D.C. 20510 Dear Tom: As you consider the Labor, HHS, and Education appropriation bill for 1994, I ask your support for several programs I believe important to people with disabilities, an interest I know you share as well, and represent top value for our scarce resources. I apologize for the lateness of these requests, but some of these issues were not ripe earlier. 1. HHS: National Center for Medical Rehabilitation Research For NCMRR, located within the National Institute on Child Health and Human Development at NIH, I request a total appropriation of $20 million. This amount would permit this important new program (first funded in 1992) to grow, although still very modestly. The Administration requests $10.6 million, and although House report language is vague (see H.Rpt. 103-156 at 61), I understand it recommends $13.0 million. Even that amount would allow only about $3 million of new projects, as more than $9 million of NCMRR funds are tied up in multi-year or deferred awards. Suggested report language is provided in Attachment A. Rehabilitation is a neglected field. For example, only about half of the nation's medical schools have a Department of Rehabilitation Medicine. And only a very small percentage of medical students receive any training in rehabilitation. Let me also note that despite NIH claims that it funds substantial rehabilitation research in other Institutes, I believe a close examination would find otherwise. 2. HHS: National Workshop on Barriers to Rehabilitation of Patients with Renal Disease The National Kidney and Urologic Diseases Advisory Board at NIH will sponsor a 3-day workshop on rehabilitation of people with kidney failure in Spring 1994. Total workshop budget is about $200,000, which exceeds what is available in the Advisory Board's budget. I ask for no funding, but request that in report... The Honorable Tom Harkin September 1, 1993 Page 2 (End of Letterhead) ...language four agencies with relevant responsibilities be urged to contribute to conference funding: National Institute of Diabetes and Digestive and Kidney Diseases, Agency for Health Care Policy and Research, National Institute on Disability and Rehabilitation Research, and Rehabilitation Services Administration. Suggested report language is provided in Attachment B. By way of background, in 1972 Congress created a unique entitlement to Medicare for people with kidney failure --qualifying such individuals regardless of the usual criteria of age or disability. Optimistically, it expected that such individuals could live full lives, although in fact today most people on dialysis are severely disabled. The medical costs of kidney disease are very expensive --for example, dialysis or transplants cost more than 3% of the Medicare budget, although people with kidney failure are only 1/10 of 1% of beneficiaries. Disturbingly, the field of renal rehabilitation is almost non-existent, and at no time in the past 20 years has there been a national meeting devoted to this subject. The workshop is intended to jump start interest in this field. 3. HHS: Family Friends Demonstration Projects In past years, I have requested the Committee include funds for the Family Friends project of the National Council on Aging under the social services research account of Children and Family Services Programs, to which it has graciously consented. This year the President has included such funding ($500,000) in his budget for the first time, in the Administration on Aging's research, training, and special projects account. I request no funds but simply report language supporting the President's request. Suggested language is provided in Attachment C. As always, I very much appreciate your consideration of my requests. Should you or your staff have any questions regardingthese programs, please contact Dr. Alexander Vachon of my staff at 4-8959. Sincerely, BOB DOLE United States Senate BD/rav Attachment A: Report Language Re the National Center for Medical Rehabilitation Research (To be placed under headings as listed) Title II - Department of Health and Human Services National Institutes on Health National Institute on Child Health and Human Development National Center for Medical Rehabilitation Research "The Committee has provided $20.0 million for the National Center on Medical Rehabilitation Research. Given the Center's existing multi-year and deferred funding commitments, the Administration's request would permit less than $1 million in new projects, and the House recommendation only about $3 million. The Committee believes even its recommended appropriation is modest, and the minimum necessary to allow the Center to grow and realize its promise in providing national leadership in medical rehabilitation research and practice." Attachment B: Report Language, Nat'l Workshop on Barriers to Rehabilitation of Patients with Renal Disease (To be placed under headings as listed below) 1. Title II - Department of HHS/NIH/National Institute of Diabetes and Digestive and Kidney Disease "The Committee notes that the National Kidney and Urologic Diseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Director of NIDDK to contribute funding to this workshop." 2. Title II - Department of HHS/Office of the Assistant Secretary for Health/Agency for Health Care Policy and Research "The Committee notes that the National Kidney and Urologic Diseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Administrator of AHCPR to contribute funding to this workshop." 3. Title III - Department of Education/Rehabilitation Services and Handicapped Research/National Institute on Disability and Rehabilitation Research "The Committee notes that the National Kidney and Urologic Diseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Director of NIDRR to contribute funding to this workshop." 4. Title III - Department of Education/Rehabilitation Services and Disability Research/Rehabilitation Services Administration "The Committee notes that the National Kidney and Urologic Diseases Advisory Board will sponsor a workshop on rehabilitation of people with kidney failure in 1994. This condition is expensive to the nation and neglected in rehabilitation research and practice. The Advisory Board is to be commended for its initiative, and the Committee urges the Commissioner of RSA to contribute funding to this workshop." Attachment C: Family Friends (Under headings as listed below) Title II - Department of Health and Human Services Children and Family Services Programs Administration on Aging Research, training, and special projects "In previous years, the Committee has taken the initiative to provide funds for the Family Friends program of the National Council on Aging in the social services research account of Children and Family Services Programs. The Family Friends program trains volunteer senior citizens as aides to give assistance and support to families with disabled or chronically ill children, thereby providing respite to parents and additional nurturing to such children and helping reduce the cost of their care. The Committee is pleased that in the FY 94 budget request $500,000 has been included for the Family Friends program in the Administration on Aging's research, training, and special projects account."