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The Fog of War and the Declining Prevalence of Mental Retardation

The Fog of War and the Declining Prevalence of Mental Retardation According to legend, Canute the Great, the 11th century king of England, Norway, and Denmark, ordered his throne brought to the seashore at low tide. Ruler of an extensive realm, he commanded the incoming tide not wet the hem of his gown. The tide paid no attention. The moistened Canute reputedly chastened his followers, how empty is the authority of kings in comparison with a higher power which alone controls nature.1 We need to be reminded of our limitations. In the face of great strides in medical research, legislators, scientists, and the public are often seduced into unbridled optimism by medical breakthroughs—the hope of cure. Such optimism is impelled by revolutionary therapies and dramatic leaps in understanding, the basis of Nobel Prizes. Similarly, the power of clean water, safe food production, and general sanitation stand as modern accomplishments. But our perception is also driven by publicly waged wars on cancer, drugs, and AIDS, for these wars are backed by presidential prestige and congressional allocations, high-profile stuff. In the early 1960s, President Kennedy invoked one such war against a condition his own family had experienced—mental retardation (MR). Kennedy and Eunice Shriver, in particular, helped establish a mandate to take on this “major national health problem,” which struck 10 times more people than diabetes mellitus and 600 more than polio.2 They assembled a presidential panel of experts to generate a report and a battle plan to take on MR. In this issue, Brosco and colleagues3 use a blend of historical and epidemiological analysis to chasten us once again. Beginning with Kennedy's declaration, they follow the war's impact on 5 infectious and 2 genetic conditions to assess the overall effect on MR's prevalence. By comparing contemporary estimates of MR from 1950 to 2000 and the imputed impact of condition-specific preventions, they identify both a general downward trend in MR and relative declines for each of the 7 conditions. The battle plan seemingly had an impact on those diseases preventable by conventional means, optimistically cutting their proportion of the total number of cases from 16.5% to 0.005%. The problem is the condition-specific effects are a small percentage of the general trend. As cogent as this study is, it demands a measure of the economist's ceteris paribus. All things weren't equal over the 50 years studied. Not the least static among them was the growth of neonatology and its professionalizing imperatives for “rescuing” increasingly premature infants.4 Concomitantly, care for children with Down syndrome altered with the growth of pediatric cardiac surgery, multidisciplinary clinics, and antibiotics. Nor can the legalization of abortion be underestimated in its impact of bringing to term children with a variety of disabilities.5,6 The authors intentionally avoided such conditions and interventions. This is, of course, the matter of heated, protracted debate in the United States, particularly around disabilities.7 Finally, the very racial makeup of America has changed over the last 50 years, providing different genetic bases to their already heavily inflected denominators. The ceteris were not paribus. Certainly, the impact of broad-based initiatives from folate to iron supplementation and from welfare-based nutrition programs, like Women, Infants, and Children, to fluctuating funding for special education all played a part in the changing milieu of MR epidemiology. So too did the quagmire in 50 years of changing definitions of MR and their variable application in interventions like Head Start. The authors appropriately target the role of such wider efforts for future campaigns. Health care professionals don't often agree on the “success” of disease wars, but scientists invariably see the benefits to basic research.8 Like the program to take man to the moon, with its resulting Tang, intensive care unit cardiorespiratory sensors, and myriad other devices, these wars have unanticipated benefits. A significant one is educating the general public about disabilities. In the early to mid-1960s, for example, the “right to treatment” movement synergized with Kennedy's mandates, coinciding in the landmark 1966 Rouse v Cameron case in Washington, DC. The case validated the right of those involuntarily committed to institutions to receive treatment rather than merely confinement, the so-called quid pro quo for loss of liberty.9 Social welfare programs for the mentally disabled helped alter their civil rights, blending into the incipient disability rights movement, akin to the Civil Rights and Women's Rights movements of the 1960s. Nor was the Kennedy push aimed only at prevention. It also targeted education and general care. Indeed the presidential panel made 95 recommendations, many taken up in legislation. When enacted in Public Laws 88-15610 and 88-16411 in 1963, the collective acts doubled the spending ceiling for the Maternal and Child Health Bureau's state grant program and, in an unprecedented move, required all 50 states to generate comprehensive blueprints of services for those with MR. Funding came for centers for research, yes, but also for clinics and treatment centers. In 1963, Kennedy signed the Community Mental Health Centers Act, creating many such centers across the country.12 The bills also funded training centers for students and residents and 3 sets of education grants to teach teachers who worked with those with disabilities.13 These changes came against a backdrop of swelling interest nationally in finding ways to adapt to MR and childhood disability more broadly.14 Such interest extended from researchers, including the work of Ivar Asbjørn Følling, MD, and Robert Guthrie, PhD, MD, with phenylketonuria, and psychologists' behavioral adaptation scales as well as family groups, such as the 1950s National Association for Retarded Children, coalescing around the identity of MR as a condition.15 Likewise, the March of Dimes, polio's old nemesis, reacted to its initial successes and shifted its resources toward birth defects. On the other hand, medical social scientists like Thomas McKeown, PhD, Ivan Illich, PhD, and Archibald Cochrane, MB, BCh, criticized our emphasis on scientific and clinical discoveries for improving public health and clinical care.16-19 One may interpret the present study as a late extension of that American crise du coeur over the value of science to health.20 While McKeown's thesis about a rising standard of living improving longevity more than science or public health has been effectively overturned, there is an ongoing debate over the health returns from economic investment in scientific medicine.21,22 Nevertheless, the questions raised by McKeown and others about the relative value of socioeconomic development, public health interventions, and condition-specific therapy remain a critical subject for today's policy makers. A previous war, of a sort, was declared on childhood disabilities by a US president. Responding to a variety of motivations, not the least his own experience with polio, Franklin D. Roosevelt included funding for disabled children in the Social Security Act of 1935.23 The US Children's Bureau, the funding's administrator, began by trying to count America's disabled children. One may wonder that those on Kennedy's panel did not start in a similar fashion, thus filling in the data gaps, with which Brosco and his colleagues3 are struggling. After all, this is lesson 6 from Errol Morris' 2003 movie The Fog of War, chronicling Robert S. McNamara's reflections on the Vietnam War: “get the data.” However in this war, data are not enough. As one US Department of Health and Human Services document noted in 1988, “We have heard a good deal about a war on drugs and a war on AIDS. If we are waging a war on mental retardation and related disabilities, it is increasingly being waged by a handful of troops being provided with pea-shooters for scientific weapons.”24(p713) Whether investment in genomics and molecular biology, for example, will really offer stronger weapons remains to be seen; we can only hope to have the wisdom to use them appropriately. In the fog of war, wisdom is especially difficult to divine. The belated perspective of history is often the only arbiter. But then, wise King Canute probably knew that almost a thousand years ago. Correspondence: Dr Schalick, Division of Newborn Medicine, One Children's Place, Box 8116, St Louis, MO 63110 (schalick_w@kids.wustl.edu). References 1. Henry of Huntingdon, Historia Anglorum: The History of the English People Greenway D, trans-ed. Oxford, England Clarendon Press1996; 2. US House of Representatives, Supplemental Appropriations to Combat Mental Retardation. Washington, DC Government Printing Office1963;5 3. Brosco JPMattingly MSanders LM Impact of specific medical interventions on reducing the prevalence of mental retardation Arch Pediatr Adolesc Med 2006;160302- 309Google ScholarCrossref 4. Baker JPStern AMedMarkel Hed Technology in the nursery: incubators, ventilators, and the rescue of premature infants Formative Years: Children's Health in The United States, 1880-2000 Ann Arbor University of Michigan Press2004;66- 90Google Scholar 5. Reagan LJ When Abortion Was a Crime: Women, Medicine and Law in the United States, 1867-1973. Berkeley University of California Press1997; 6. Finer LBHenshaw SK Estimates of US abortion incidence in 2001 and 2002 Available athttp://www.guttmacher.org/pubs/2005/05/18/ab_incidence.pdfAccessed December 17, 2005 7. Parens EedAsch Aed Prenatal Testing and Disability Rights. Washington, DC Georgetown University Press2000; 8. Berkowitz ED To Improve Human Health: A History of the Institute of Medicine. Washington, DC Institute of Medicine1998;219 9. Braddock DLParish SLAlbrecht GLedSeelman KDedBury Med An institutional history of disability Handbook of Disability Studies Thousand Oaks, Calif Sage Press2001;11- 68Google Scholar 10. Maternal and Child Health and Mental Retardation Planning Amendments of 1963, Pub L No. 88-156 (1963) 11. Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963, Pub L No. 88-164 (1963) 12. Grob G The Mad Among Us: A History of the Care of America's Mentally Ill New York, NY Free Press1994; 13. Berkowitz ED Social welfare and the American state Critchlow DTedHawley WedHawley EWed Federal Social Policy: The Historical Dimension. State College Penn State Press.1984;171- 200Google Scholar 14. Schalick WOAlbrecht GLed Children, youth and adolescence Encyclopedia of Disability. Thousand Oaks, Calif Sage Press2005;245- 254Google Scholar 15. Ainsworth PBaker PC Understanding Mental Retardation: A Resource for Parents, Caregivers and Counselors. Jackson University Press of Mississippi2004; 16. McKeown T The Modern Rise of Population New York, NY Academic Press1976; 17. McKeown T The Role of Medicine: Dream, Mirage, or Nemesis? London, England Nuffield Provincial Hospitals Trust1976; 18. Illich I Limits to Medicine: Medical Nemesis: The Expropriation of Health New York, NY Pantheon1982; 19. Cochrane AL Effectiveness and Efficiency: Random Reflections on Health Service. London, England Nuffield Provincial Hospitals Trust1972; 20. Alvarez-Dardet CRuiz MT Thomas McKeown and Archibald Cochrane: a journey through the diffusion of their ideas BMJ 1993;3061252- 1254PubMedGoogle ScholarCrossref 21. Cutler DM Your Money or Your Life: Strong Medicine for America's Health Care System New York, NY Oxford University Press2004; 22. Colgrove J The McKeown Thesis: a historical controversy and its enduring legacy Am J Public Health 2002;92725- 729Google ScholarCrossref 23. Lindenmeyer K A Right to Childhood: The US Children's Bureau and Child Welfare, 1912-46. Urbana University of Illinois Press1997; 24. Departments of Health and Human Services, Education, and Related Agencies of the United States and the US Congress, Departments of Labor, Health and Human Services, Education, and Related Agencies Appropriations for 1989. Washington, DC Government Printing Office1988;713 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Archives of Pediatrics & Adolescent Medicine American Medical Association

The Fog of War and the Declining Prevalence of Mental Retardation

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Publisher
American Medical Association
Copyright
Copyright © 2006 American Medical Association. All Rights Reserved.
ISSN
1072-4710
eISSN
1538-3628
DOI
10.1001/archpedi.160.3.318
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Abstract

According to legend, Canute the Great, the 11th century king of England, Norway, and Denmark, ordered his throne brought to the seashore at low tide. Ruler of an extensive realm, he commanded the incoming tide not wet the hem of his gown. The tide paid no attention. The moistened Canute reputedly chastened his followers, how empty is the authority of kings in comparison with a higher power which alone controls nature.1 We need to be reminded of our limitations. In the face of great strides in medical research, legislators, scientists, and the public are often seduced into unbridled optimism by medical breakthroughs—the hope of cure. Such optimism is impelled by revolutionary therapies and dramatic leaps in understanding, the basis of Nobel Prizes. Similarly, the power of clean water, safe food production, and general sanitation stand as modern accomplishments. But our perception is also driven by publicly waged wars on cancer, drugs, and AIDS, for these wars are backed by presidential prestige and congressional allocations, high-profile stuff. In the early 1960s, President Kennedy invoked one such war against a condition his own family had experienced—mental retardation (MR). Kennedy and Eunice Shriver, in particular, helped establish a mandate to take on this “major national health problem,” which struck 10 times more people than diabetes mellitus and 600 more than polio.2 They assembled a presidential panel of experts to generate a report and a battle plan to take on MR. In this issue, Brosco and colleagues3 use a blend of historical and epidemiological analysis to chasten us once again. Beginning with Kennedy's declaration, they follow the war's impact on 5 infectious and 2 genetic conditions to assess the overall effect on MR's prevalence. By comparing contemporary estimates of MR from 1950 to 2000 and the imputed impact of condition-specific preventions, they identify both a general downward trend in MR and relative declines for each of the 7 conditions. The battle plan seemingly had an impact on those diseases preventable by conventional means, optimistically cutting their proportion of the total number of cases from 16.5% to 0.005%. The problem is the condition-specific effects are a small percentage of the general trend. As cogent as this study is, it demands a measure of the economist's ceteris paribus. All things weren't equal over the 50 years studied. Not the least static among them was the growth of neonatology and its professionalizing imperatives for “rescuing” increasingly premature infants.4 Concomitantly, care for children with Down syndrome altered with the growth of pediatric cardiac surgery, multidisciplinary clinics, and antibiotics. Nor can the legalization of abortion be underestimated in its impact of bringing to term children with a variety of disabilities.5,6 The authors intentionally avoided such conditions and interventions. This is, of course, the matter of heated, protracted debate in the United States, particularly around disabilities.7 Finally, the very racial makeup of America has changed over the last 50 years, providing different genetic bases to their already heavily inflected denominators. The ceteris were not paribus. Certainly, the impact of broad-based initiatives from folate to iron supplementation and from welfare-based nutrition programs, like Women, Infants, and Children, to fluctuating funding for special education all played a part in the changing milieu of MR epidemiology. So too did the quagmire in 50 years of changing definitions of MR and their variable application in interventions like Head Start. The authors appropriately target the role of such wider efforts for future campaigns. Health care professionals don't often agree on the “success” of disease wars, but scientists invariably see the benefits to basic research.8 Like the program to take man to the moon, with its resulting Tang, intensive care unit cardiorespiratory sensors, and myriad other devices, these wars have unanticipated benefits. A significant one is educating the general public about disabilities. In the early to mid-1960s, for example, the “right to treatment” movement synergized with Kennedy's mandates, coinciding in the landmark 1966 Rouse v Cameron case in Washington, DC. The case validated the right of those involuntarily committed to institutions to receive treatment rather than merely confinement, the so-called quid pro quo for loss of liberty.9 Social welfare programs for the mentally disabled helped alter their civil rights, blending into the incipient disability rights movement, akin to the Civil Rights and Women's Rights movements of the 1960s. Nor was the Kennedy push aimed only at prevention. It also targeted education and general care. Indeed the presidential panel made 95 recommendations, many taken up in legislation. When enacted in Public Laws 88-15610 and 88-16411 in 1963, the collective acts doubled the spending ceiling for the Maternal and Child Health Bureau's state grant program and, in an unprecedented move, required all 50 states to generate comprehensive blueprints of services for those with MR. Funding came for centers for research, yes, but also for clinics and treatment centers. In 1963, Kennedy signed the Community Mental Health Centers Act, creating many such centers across the country.12 The bills also funded training centers for students and residents and 3 sets of education grants to teach teachers who worked with those with disabilities.13 These changes came against a backdrop of swelling interest nationally in finding ways to adapt to MR and childhood disability more broadly.14 Such interest extended from researchers, including the work of Ivar Asbjørn Følling, MD, and Robert Guthrie, PhD, MD, with phenylketonuria, and psychologists' behavioral adaptation scales as well as family groups, such as the 1950s National Association for Retarded Children, coalescing around the identity of MR as a condition.15 Likewise, the March of Dimes, polio's old nemesis, reacted to its initial successes and shifted its resources toward birth defects. On the other hand, medical social scientists like Thomas McKeown, PhD, Ivan Illich, PhD, and Archibald Cochrane, MB, BCh, criticized our emphasis on scientific and clinical discoveries for improving public health and clinical care.16-19 One may interpret the present study as a late extension of that American crise du coeur over the value of science to health.20 While McKeown's thesis about a rising standard of living improving longevity more than science or public health has been effectively overturned, there is an ongoing debate over the health returns from economic investment in scientific medicine.21,22 Nevertheless, the questions raised by McKeown and others about the relative value of socioeconomic development, public health interventions, and condition-specific therapy remain a critical subject for today's policy makers. A previous war, of a sort, was declared on childhood disabilities by a US president. Responding to a variety of motivations, not the least his own experience with polio, Franklin D. Roosevelt included funding for disabled children in the Social Security Act of 1935.23 The US Children's Bureau, the funding's administrator, began by trying to count America's disabled children. One may wonder that those on Kennedy's panel did not start in a similar fashion, thus filling in the data gaps, with which Brosco and his colleagues3 are struggling. After all, this is lesson 6 from Errol Morris' 2003 movie The Fog of War, chronicling Robert S. McNamara's reflections on the Vietnam War: “get the data.” However in this war, data are not enough. As one US Department of Health and Human Services document noted in 1988, “We have heard a good deal about a war on drugs and a war on AIDS. If we are waging a war on mental retardation and related disabilities, it is increasingly being waged by a handful of troops being provided with pea-shooters for scientific weapons.”24(p713) Whether investment in genomics and molecular biology, for example, will really offer stronger weapons remains to be seen; we can only hope to have the wisdom to use them appropriately. In the fog of war, wisdom is especially difficult to divine. The belated perspective of history is often the only arbiter. But then, wise King Canute probably knew that almost a thousand years ago. Correspondence: Dr Schalick, Division of Newborn Medicine, One Children's Place, Box 8116, St Louis, MO 63110 (schalick_w@kids.wustl.edu). References 1. Henry of Huntingdon, Historia Anglorum: The History of the English People Greenway D, trans-ed. Oxford, England Clarendon Press1996; 2. US House of Representatives, Supplemental Appropriations to Combat Mental Retardation. Washington, DC Government Printing Office1963;5 3. Brosco JPMattingly MSanders LM Impact of specific medical interventions on reducing the prevalence of mental retardation Arch Pediatr Adolesc Med 2006;160302- 309Google ScholarCrossref 4. Baker JPStern AMedMarkel Hed Technology in the nursery: incubators, ventilators, and the rescue of premature infants Formative Years: Children's Health in The United States, 1880-2000 Ann Arbor University of Michigan Press2004;66- 90Google Scholar 5. Reagan LJ When Abortion Was a Crime: Women, Medicine and Law in the United States, 1867-1973. Berkeley University of California Press1997; 6. Finer LBHenshaw SK Estimates of US abortion incidence in 2001 and 2002 Available athttp://www.guttmacher.org/pubs/2005/05/18/ab_incidence.pdfAccessed December 17, 2005 7. Parens EedAsch Aed Prenatal Testing and Disability Rights. Washington, DC Georgetown University Press2000; 8. Berkowitz ED To Improve Human Health: A History of the Institute of Medicine. Washington, DC Institute of Medicine1998;219 9. Braddock DLParish SLAlbrecht GLedSeelman KDedBury Med An institutional history of disability Handbook of Disability Studies Thousand Oaks, Calif Sage Press2001;11- 68Google Scholar 10. Maternal and Child Health and Mental Retardation Planning Amendments of 1963, Pub L No. 88-156 (1963) 11. Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963, Pub L No. 88-164 (1963) 12. Grob G The Mad Among Us: A History of the Care of America's Mentally Ill New York, NY Free Press1994; 13. Berkowitz ED Social welfare and the American state Critchlow DTedHawley WedHawley EWed Federal Social Policy: The Historical Dimension. State College Penn State Press.1984;171- 200Google Scholar 14. Schalick WOAlbrecht GLed Children, youth and adolescence Encyclopedia of Disability. Thousand Oaks, Calif Sage Press2005;245- 254Google Scholar 15. Ainsworth PBaker PC Understanding Mental Retardation: A Resource for Parents, Caregivers and Counselors. Jackson University Press of Mississippi2004; 16. McKeown T The Modern Rise of Population New York, NY Academic Press1976; 17. McKeown T The Role of Medicine: Dream, Mirage, or Nemesis? London, England Nuffield Provincial Hospitals Trust1976; 18. Illich I Limits to Medicine: Medical Nemesis: The Expropriation of Health New York, NY Pantheon1982; 19. Cochrane AL Effectiveness and Efficiency: Random Reflections on Health Service. London, England Nuffield Provincial Hospitals Trust1972; 20. Alvarez-Dardet CRuiz MT Thomas McKeown and Archibald Cochrane: a journey through the diffusion of their ideas BMJ 1993;3061252- 1254PubMedGoogle ScholarCrossref 21. Cutler DM Your Money or Your Life: Strong Medicine for America's Health Care System New York, NY Oxford University Press2004; 22. Colgrove J The McKeown Thesis: a historical controversy and its enduring legacy Am J Public Health 2002;92725- 729Google ScholarCrossref 23. Lindenmeyer K A Right to Childhood: The US Children's Bureau and Child Welfare, 1912-46. Urbana University of Illinois Press1997; 24. Departments of Health and Human Services, Education, and Related Agencies of the United States and the US Congress, Departments of Labor, Health and Human Services, Education, and Related Agencies Appropriations for 1989. Washington, DC Government Printing Office1988;713

Journal

Archives of Pediatrics & Adolescent MedicineAmerican Medical Association

Published: Mar 1, 2006

Keywords: intellectual disability,wars

References