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Policy: Its History, Intentions, and Consequences for Children with Special Health Care Needs

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Handbook of Children with Special Health Care Needs

Abstract

Children who have special health care needs are a vulnerable population developmentally, socially, and politically. The programs and services they depend on to promote their optimal growth and development are subject to the vagaries of public policy and its often inexplicable development process. At the same time, children with special health care needs stand to benefit greatly from policies that enable the provision of services and supports to them and their families. In this chapter, we will describe policy, the evolution of policies for this population of children over time in a variety of arenas, policy themes, and future avenues for policy direction.

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Abbreviations

AMA:

American Medical Association

EPSDT:

Early Periodic Screening, Diagnosis, and Treatment

IDEA:

Individuals with Disabilities Education Act

IFSP:

Individualized Family Service Plan

OBRA:

Omnibus Budget Reconciliation Act

PKU:

Phenylketonuria

PL:

Public Law

SCHIP:

State Children’s Health Insurance Program

References

  • Administration of Children and Families, U.S. Department of Health and Human Services Office of Public Affairs Fact Sheet, Head Start Bureau. (2010). http://www.acf.hhs.gov/programs/ohs/index.html. Accessed 28 Dec 2010.

    Google Scholar 

  • Alexander, G. R., Petersen, D. J., & Allen, M. E. (1999). Life on the edge: preterm births at the limit of viability—committed to their survival, are we equally committed to their prevention and long-term care? The Medicolegal Ob/Gyn Newsletter, 8(4), 1, 18–21 (West Virginia: American Society of Forensic Obstetricians and Gynecologists).

    Google Scholar 

  • Alexander, G. R., Petersen, D. J., Pass, M. A., Slay, M., Chadwick, C., & Shumpert, N. (2002). Maternal and child health/public health milestones, history and philosophy and the MCH timeline. Birmingham: The MCH Leadership Skills Training Institute, Department of Maternal and Child Health, University of Alabama at Birmingham. www.mchb.hrsa.gov/timeline/. Accessed 13 Dec 2010.

    Google Scholar 

  • American Academy of Pediatrics, Ad Hoc Task Force on Definition of the Medical Home. (1992). The medical home. Pediatrics, 90(5), 774.

    Google Scholar 

  • American Academy of Pediatrics Policy Statement, Medical Home Initiatives for Children with special health care Needs Project Advisory Committee. (2002). The medical home. Pediatrics, 110(1), 184–186.

    Google Scholar 

  • American College of Medical Genetics commissioned by the U.S. Department of Health and Human Services, Health Resources and Services Administration. (2006). Newborn screening: Towards a uniform screening panel and system. Genetics Medical, 8(5 Suppl), S12--S252.

    Google Scholar 

  • Association of Maternal and Child Health Programs Fact Sheet. (2010). Health care reform. What’s in it for children with special health care needs. www.amchp.org. Accessed 14 Dec 2010.

    Google Scholar 

  • Blackman, J. A. (1994). Screening and early identification. In H. M. Wallace, R. P. Nelson, & P. J. Sweeney (Eds), Maternal and child health practices (4th ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Brosco, J. P. (2010). Locating the future in the past: A history of maternal and child health programs in the US. Washington: Maternal and Child Health Bureau.

    Google Scholar 

  • Farel, A. M. (1997). Children with special health care needs. In J. Kotch (Ed.), Maternal and child health: Programs, problems and policy in public health. Gaithersburg: Aspen.

    Google Scholar 

  • Fox, H. B., McManus, M. A., & Reichmann, M. B. (2002). The strengths and weaknesses of private health insurance coverage for children with special health care needs. Washington: MCH policy research center. www.mchpolicy.org. Accessed 23 Dec 2010.

    Google Scholar 

  • Halfon, N., & Hochstein, M. (1997). Developing a system of care for all: what the needs of vulnerable children tell us. In R. K. Stein (Ed.), Health care for children: What’s right, what’s wrong, what’s next. New York: United Hospital Fund of New York.

    Google Scholar 

  • Hitchcock, L. I., & Mulvihill, B. (2010). The early years of Title V: Extending and improving care for children with special health care needs 1935–1941. Maternal and Child Health Journal, 15, 139–147.

    Google Scholar 

  • Hutchins, V. L. (1997). A history of child health and pediatrics in the United States. In R. K. Stein (Ed.), Health care for children: What’s right, what’s wrong, what’s next. New York: United Hospital Fund of New York.

    Google Scholar 

  • Ireys, H. T. (1988). Description of the population (of children with special health care needs). In H. M. Wallace, G. M. Ryan, & A. C. Oglesby (Eds.), Maternal and child health practices (3rd ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Ireys, H. T., & Nelson, R. P. (1992). New federal policy for children with special health care needs: Implications for pediatricians. Pediatrics, 90, 321–327.

    PubMed  CAS  Google Scholar 

  • Kogan, M. D., Newacheck, P. W., Blumberg, S. J., Ghandour, R. M., Singh, G. K., Strickland, B. B., & van Dyck, P. C. (2010). Underinsurance among children in the United States. New England Journal of Medicine, 363(9), 841–851.

    Article  PubMed  CAS  Google Scholar 

  • Koop, C. E. (1987). Surgeon general’s report on children with special health care needs. U.S. Department of Health and Human Services (HRS/D/MC 87–2). Washington: U.S. Government Printing Office.

    Google Scholar 

  • Lesser, A. J. (1985). The origin and development of maternal and child health programs in the United States. American Journal of Public Health, 75(6), 590–598.

    Article  PubMed  CAS  Google Scholar 

  • Magee, E. M., & Pratt, M. W. (1985). 1935–1985: 50 years of US federal support to promote the health of mothers, children and handicapped children in America. Vienna: Information Sciences Research Institute.

    Google Scholar 

  • Margolis, L. H., Cole, G. P., & Kotch, J. B. (1997). Historical foundations of maternal and child health. In J. Kotch (Ed.), Maternal and child health: Programs, problems and policy in public health. Gaithersburg: Aspen.

    Google Scholar 

  • Markus, A. S., Rosenbaum, S., & Cyprien, S. (2004). SCHIP-enrolled children with special health care needs: an assessment of coordination efforts between state SCHIP and Title V programs. Washington: Kaiser Commission on Medicaid and the Uninsured, Kaiser Family Foundation.

    Google Scholar 

  • McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P., Perrin, J., Shonkoff, J., & Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1), 137–140.

    Article  PubMed  CAS  Google Scholar 

  • Merriam-Webster. (2010). www.Merriam-Webster.com. Accessed 13 Dec 2010.

    Google Scholar 

  • Miller, C. A. (1988). Development of MCH service and policy in the United States. In H. M. Wallace, G. M. Ryan, & A. C. Oglesby (Eds.), Maternal and child health practices (3rd ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Moss, K. (1987). The “Baby Doe” legislation: Its rise and fall. Policy Studies Journal, 15(4), 629–651.

    Article  PubMed  Google Scholar 

  • Nelson, R. P. (1994). The legislative base of programs for children with special health care needs. In H. M. Wallace, R. P. Nelson, & P. J. Sweeney (Eds.), Maternal and child health practices (4th ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Newacheck, P., & Taylor, W. (1992). Prevalence and impact of childhood chronic conditions. American Journal of Public Health, 82, 364–371.

    Article  PubMed  CAS  Google Scholar 

  • Oglesby, A. C. (1988). Systems for care for children with special health care needs. In H. M. Wallace, G. M. Ryan, & A. C. Oglesby (Eds.), Maternal and child health practices (3rd ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Okinow, N. A. (1994). Transition of youth with special health care needs. In H. M. Wallace, R. P. Nelson, & P. J. Sweeney (Eds.), Maternal and child health practices (4th ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Palfrey J. S., Haynie, M., Porter, S., Fenton, T., Cooperman-Vincent, P., Shaw, D., Johnson, B., Bierle, T., & Walker, D. K. (1994). Prevalence of medical technology assistance among children in Massachusetts in 1987 and 1990. Public Health Reports, 109(2), 226–233.

    PubMed  CAS  Google Scholar 

  • Perrin, E. C., Newacheck, P., Pless, I. B., Drotar, D., Gortmaker, S. L., Leventhal, J., Perrin, J. M., Stein, R. E., Walker, D. K., & Weitzman, M. (1993). Issues involved in the definition and classification of chronic health conditions. Pediatrics, 91(4), 787–793.

    PubMed  CAS  Google Scholar 

  • Rosenbaum, S. (2008). CMS medicaid regulations: Implications for children with special health care needs. Washington: George Washington University, School of Public Health and Health Care Services.

    Google Scholar 

  • Saunders, S. E. (1988). Medicaid and maternal and child health, and programs for children with special health care needs. In H. M. Wallace, G. M. Ryan, & A. C. Oglesby (Eds.), Maternal and child health practices (3rd ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Schmidt, W. M., & Wallace, H. M. (1994). The development of health services for mothers and children in the United States. In H. M. Wallace, R. P. Nelson, & P. J. Sweeney (Eds.), Maternal and child health practices (4th ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Sheps, M. P., & Alexander, G. R. (2001). Landmark federal MCH legislation. Deltaomega classics series. www.deltaomega.com. Accessed 21 Jan 2011.

    Google Scholar 

  • Sia, C. J., & Peter, M. I. (1988). The medical home comes of age. Hawaii Medical Journal, 47(9), 409–410.

    PubMed  CAS  Google Scholar 

  • Sia, C. Tonniges, T. F., Osterhus, E., & Taba, S. (2004). History of the medical home concept. Pediatrics, 113(5 Suppl), 1473–1478.

    PubMed  Google Scholar 

  • Stein, R., & Jessop, D. (1982). A non-categorical approach to chronic childhood illness. Public Health Reports, 97, 354–362.

    PubMed  CAS  Google Scholar 

  • Stubbs, P. (1994). The head start program. In H. M. Wallace, R. P. Nelson, & P. J. Sweeney (Eds.), Maternal and child health practices (4th ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Takanishi, R. (1978). Childhood as a social issue: historical roots of contemporary child advocacy movements. Journal of Social Issues, 34, 8–28.

    Article  Google Scholar 

  • Teitelbaum, J. B., & Wilensky, S. E. (2007). Essentials of health policy and law. Sudbury: Jones and Bartlett.

    Google Scholar 

  • U.S. Congress. (1912). The Children’s Bureau Act PL 92-116.

    Google Scholar 

  • U.S. Congress. (1921). The Maternal and Infancy (Sheppard-Towner) Act PL 67-97.

    Google Scholar 

  • U.S. Congress. (1935). The Social Security Act PL 74-271, Title V Grants to States for Maternal and Child Welfare, Part 1—Maternal and Child Health Services, Part 2—Crippled Children’s Services.

    Google Scholar 

  • U.S. Congress. (1981). Omnibus Budget Reconciliation Act of 1981 PL 97-35, Maternal and Child Health Services Block Grant.

    Google Scholar 

  • U.S. Congress. (1989). Omnibus Budget Reconciliation Act of 1989 PL 101-239, Maternal and Child Health Block Grant Program.

    Google Scholar 

  • U.S. Congress. (2010). Patient Protection and Affordable Health Care Act, Public Law 111-148. http://thomas.loc.gov/cgi-.

    Google Scholar 

  • U.S. Department of Health and Human Services. (1990). Healthy people 2000: National health promotion and disease prevention objectives. DHHS (PHS) Publication (No. 91-50212).

    Google Scholar 

  • U.S. Department of Health and Human Services. (2000). Healthy people 2010: Understanding and improving health (2nd ed.). Washington: U.S. Government Printing Office.

    Google Scholar 

  • U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2008). The national survey of children with special health care needs chartbook 2005–2006. Rockville: U.S. Department of Health and Human Services.

    Google Scholar 

  • U.S. Department of Health and Human Services, Public Health Service. (1979). Healthy people: The surgeon general’s report on health promotion and disease prevention. Washington: U.S. Government Printing Office.

    Google Scholar 

  • U.S. Department of Health and Human Services, Public Health Service. (1980). Promoting health/preventing disease: Objectives for the nation. Washington: U.S. Government Printing Office.

    Google Scholar 

  • U.S. Department of Health and Human Services, The Select Panel for the Promotion of Child Health. (1981). Better health for our children: A national strategy. Washington: DHHS (PHS) Publication (No. 79-55071).

    Google Scholar 

  • U.S. Statutes 62 Congress 2 Sess. (1911–1912) Pt 1 (Chap. 73, pp. 79–80).

    Google Scholar 

  • van Dyck, P. C., McPherson, M., Strickland, B. B., Nesseler, K., Blumberg, S. J., Cynamon, M. L., & Newacheck, P. W. (2002). The national survey of children with special health care needs. Ambulatory Pediatrics, 2, 29–37.

    Article  PubMed  Google Scholar 

  • Wald, L. (1971). The house on Henry Street. In R. H. J. Bremner (Ed.), Children and youth in America, a documentary history (Vol. II). Cambridge: Harvard University Press.

    Google Scholar 

  • Walker, D. K. (1994). Children with special health care needs in schools. In H. M. Wallace, R. P. Nelson, & P. J. Sweeney (Eds.), Maternal and child health practices (4th ed.). Oakland: Third Party Publishing.

    Google Scholar 

  • Witte, E. E. (1963). The development of the Social Security Act. Madison: University of Wisconsin Press.

    Google Scholar 

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Correspondence to Donna Petersen MHS, ScD .

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Petersen, D. (2012). Policy: Its History, Intentions, and Consequences for Children with Special Health Care Needs. In: Hollar, D. (eds) Handbook of Children with Special Health Care Needs. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-2335-5_1

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  • DOI: https://doi.org/10.1007/978-1-4614-2335-5_1

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