Official reprint from UpToDate®
www.uptodate.com ©2016 UpToDate®

Children with special health care needs

Lindsey K Grossman, MD
Teresa K Duryea, MD
Section Editor
Carolyn Bridgemohan, MD
Deputy Editor
Mary M Torchia, MD


The mission of pediatric health care providers changed considerably during the 20th century. Effective therapies were developed for many life-threatening infectious diseases and congenital abnormalities. Preventive health care (eg, immunization and anticipatory guidance for injury prevention) became more important. Many children with conditions that once were universally fatal now survive into adolescence, early adulthood, and beyond. Pediatric health care providers must be prepared to provide care to an increasing number of these children with special health care needs (CSHCN).

The traditional approach to chronic conditions in children is a categorical one, based upon an organ system, diagnosis-specific view of the condition, and an emphasis on pathophysiology and biomedical treatment. A noncategorical approach emphasizes the psychological, developmental, educational, and social aspects of the condition [1-4] and facilitates the development of programs to better assist CSHCN and their families.


The World Health Organization (WHO) defines impairment as an abnormality in body structure or appearance or in the function of an organ or system. A disability is an impairment that restricts activity. A handicap is a disability that causes an individual to be limited by society.

A chronic disorder is a serious health condition lasting at least one year that produces or is virtually certain to produce one or more of the following [1]:

Disability or limitation of function or activity


Subscribers log in here

To continue reading this article, you must log in with your personal, hospital, or group practice subscription. For more information or to purchase a personal subscription, click below on the option that best describes you:
Literature review current through: Sep 2016. | This topic last updated: Aug 11, 2016.
The content on the UpToDate website is not intended nor recommended as a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your own physician or other qualified health care professional regarding any medical questions or conditions. The use of this website is governed by the UpToDate Terms of Use ©2016 UpToDate, Inc.
  1. Stein RE. Chronic physical disorders. Pediatr Rev 1992; 13:224.
  2. Stein RE, Silver EJ. Operationalizing a conceptually based noncategorical definition: a first look at US children with chronic conditions. Arch Pediatr Adolesc Med 1999; 153:68.
  3. Desguin BW, Holt IJ, McCarthy SM. Comprehensive care of the child with a chronic condition. Part 1. Understanding chronic conditions in childhood. Curr Probl Pediatr 1994; 24:199.
  4. Perrin EC, Newacheck P, Pless IB, et al. Issues involved in the definition and classification of chronic health conditions. Pediatrics 1993; 91:787.
  5. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998; 102:137.
  6. NS-CSHCN Chartbook 2009-2010. http://mchb.hrsa.gov/cshcn0910 (Accessed on July 23, 2013).
  7. Houtrow AJ, Larson K, Olson LM, et al. Changing trends of childhood disability, 2001-2011. Pediatrics 2014; 134:530.
  8. Newacheck PW, Halfon N. Prevalence and impact of disabling chronic conditions in childhood. Am J Public Health 1998; 88:610.
  9. Mayer ML, Skinner AC, Slifkin RT, National Survey of Children With Special Health Care Needs. Unmet need for routine and specialty care: data from the National Survey of Children With Special Health Care Needs. Pediatrics 2004; 113:e109.
  10. Boudreau AA, Perrin JM, Goodman E, et al. Care coordination and unmet specialty care among children with special health care needs. Pediatrics 2014; 133:1046.
  11. Stein RE, Westbrook LE, Bauman LJ. The Questionnaire for Identifying Children with Chronic Conditions: a measure based on a noncategorical approach. Pediatrics 1997; 99:513.
  12. Stein RE, Silver EJ, Bauman LJ. Shortening the questionnaire for identifying children with chronic conditions: what is the consequence? Pediatrics 2001; 107:E61.
  13. Bethell CD, Read D, Stein RE, et al. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr 2002; 2:38.
  14. Bethell CD, Read D, Neff J, et al. Comparison of the children with special health care needs screener to the questionnaire for identifying children with chronic conditions--revised. Ambul Pediatr 2002; 2:49.
  15. Gay JC, Muldoon JH, Neff JM, Wing LJ. Profiling the health service needs of populations: description and uses of the NACHRI Classification of Congenital and Chronic Health Conditions. Pediatr Ann 1997; 26:655.
  16. Sullivan SA, Olson LM. Developing condition-specific measures of functional status and well-being for children. Clin Perform Qual Health Care 1995; 3:132.
  17. Pless IB, Satterwhite B, Van Vechten D. Division, duplication and neglect: patterns of care for children with chronic disorders. Child Care Health Dev 1978; 4:9.
  18. Palfrey JS, Levy JC, Gilbert KL. Use of primary care facilities by patients attending specialty clinics. Pediatrics 1980; 65:567.
  19. Das M, Spowart K, Crossley S, Dutton GN. Evidence that children with special needs all require visual assessment. Arch Dis Child 2010; 95:888.
  20. Neter JE, Schokker DF, de Jong E, et al. The prevalence of overweight and obesity and its determinants in children with and without disabilities. J Pediatr 2011; 158:735.
  21. American Academy of Pediatrics Council on Children with Disabilities. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics 2005; 116:1238.
  22. American Academy of Pediatrics, Committee on Pediatric Emergency Medicine and Council on Clinical Information Technology, American College of Emergency Physicians, Pediatric Emergency Medicine Committee. Policy statement--emergency information forms and emergency preparedness for children with special health care needs. Pediatrics 2010; 125:829.
  23. Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee. Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics 2014; 133:e1451.
  24. Sullivan PM, Knutson JF. Maltreatment and disabilities: a population-based epidemiological study. Child Abuse Negl 2000; 24:1257.
  25. American Academy of Pediatrics: Committee on Child Abuse and Neglect and Committee on Children With Disabilities. Assessment of maltreatment of children with disabilities. Pediatrics 2001; 108:508.
  26. Spencer N, Devereux E, Wallace A, et al. Disabling conditions and registration for child abuse and neglect: a population-based study. Pediatrics 2005; 116:609.
  27. Hibbard RA, Desch LW, American Academy of Pediatrics Committee on Child Abuse and Neglect, American Academy of Pediatrics Council on Children With Disabilities. Maltreatment of children with disabilities. Pediatrics 2007; 119:1018.
  28. Jones L, Bellis MA, Wood S, et al. Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet 2012; 380:899.
  29. Van Horne BS, Moffitt KB, Canfield MA, et al. Maltreatment of Children Under Age 2 With Specific Birth Defects: A Population-Based Study. Pediatrics 2015; 136:e1504.
  30. Kistin CJ, Tompson MC, Cabral HJ, et al. Subsequent Maltreatment in Children With Disabilities After an Unsubstantiated Report for Neglect. JAMA 2016; 315:85.
  31. The pediatrician's role in development and implementation of an Individual Education Plan (IEP) and/or an Individual Family Service Plan (IFSP). American Academy of Pediatrics. Committee on Children with Disabilities. Pediatrics 1999; 104:124.
  32. American Academy of Pediatrics Council on Children With Disabilities, Cartwright JD. Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions. Pediatrics 2007; 119:1218.
  33. Weiland SK, Pless IB, Roghmann KJ. Chronic illness and mental health problems in pediatric practice: results from a survey of primary care providers. Pediatrics 1992; 89:445.
  34. American Academy of Pediatrics Committee on Children With Disabilities and Committee on Psychosocial Aspects of Child and Family Health: Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics 1993; 92:876.
  35. Curtis CE, Luby JL. Depression and social functioning in preschool children with chronic medical conditions. J Pediatr 2008; 153:408.
  36. Stein RE, Westbrook LE, Silver EJ. Comparison of adjustment of school-age children with and without chronic conditions: results from community-based samples. J Dev Behav Pediatr 1998; 19:267.
  37. Hendriks AH, De Moor JM, Oud JH, Franken WM. Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler classes. Clin Rehabil 2000; 14:506.
  38. Thomson J, Shah SS, Simmons JM, et al. Financial and Social Hardships in Families of Children with Medical Complexity. J Pediatr 2016; 172:187.
  39. Newacheck PW, Inkelas M, Kim SE. Health services use and health care expenditures for children with disabilities. Pediatrics 2004; 114:79.
  40. Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 2005; 159:10.
  41. Davidoff AJ. Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance. Pediatrics 2004; 114:394.
  42. Oswald DP, Bodurtha JN, Willis JH, Moore MB. Underinsurance and key health outcomes for children with special health care needs. Pediatrics 2007; 119:e341.
  43. Szilagyi PG, Shone LP, Klein JD, et al. Improved health care among children with special health care needs after enrollment into the State Children's Health Insurance Program. Ambul Pediatr 2007; 7:10.
  44. Kogan MD, Newacheck PW, Honberg L, Strickland B. Association between underinsurance and access to care among children with special health care needs in the United States. Pediatrics 2005; 116:1162.
  45. Kuhlthau KA, Perrin JM. Child health status and parental employment. Arch Pediatr Adolesc Med 2001; 155:1346.
  46. Perrin JM, Shane MW, Bloom SR. Home and Community Care for Chronically Ill Children, Oxford University Press, New York 1993. p.89.
  47. Newacheck PW, McManus MA. Financing health care for disabled children. Pediatrics 1988; 81:385.
  48. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among US children, 1997-2005. Arch Pediatr Adolesc Med 2009; 163:19.
  49. Kempe A, Beaty BL, Crane LA, et al. Changes in access, utilization, and quality of care after enrollment into a state child health insurance plan. Pediatrics 2005; 115:364.
  50. Council on Children With Disabilities. From the American Academy of Pediatrics: Policy statements--Supplemental Security Income (SSI) for children and youth with disabilities. Pediatrics 2009; 124:1702.
  51. Mitchell JM, Gaskin DJ. Do children receiving Supplemental Security Income who are enrolled in Medicaid fare better under a fee-for-service or comprehensive capitation model? Pediatrics 2004; 114:196.
  52. Grossman LK, Rich LN, Michelson S, Hagerty G. Managed care of children with special health care needs: the ABC Program. Clin Pediatr (Phila) 1999; 38:153.
  53. Managed care and children with special health care needs: a subject review. American Academy of Pediatrics Committee on Children with Disabilities. Pediatrics 1998; 102:657.
  54. Davidoff A, Hill I, Courtot B, Adams E. Effects of managed care on service use and access for publicly insured children with chronic health conditions. Pediatrics 2007; 119:956.
  55. McManus MA, Fox HB. Enhancing preventive and primary care for children with chronic or disabling conditions served in health maintenance organizations. Manag Care Q 1996; 4:19.
  56. Newacheck PW, Stein RE, Walker DK, et al. Monitoring and evaluating managed care for children with chronic illnesses and disabilities. Pediatrics 1996; 98:952.
  57. American Academy of Pediatrics Ad Hoc Task Force on Definition of the Medical Home: The medical home. Pediatrics 1992; 90:774.
  58. Medical Home Initiatives for Children With Special Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. Pediatrics 2002; 110:184.
  59. Kisker CT, Fethke CC, Tannous R. Shared management of children with cancer. Arch Pediatr Adolesc Med 1997; 151:1008.
  60. Porterfield SL, DeRigne L. Medical home and out-of-pocket medical costs for children with special health care needs. Pediatrics 2011; 128:892.
  61. Mosquera RA, Avritscher EB, Samuels CL, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA 2014; 312:2640.
  62. Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics 2002; 110:1322.
  63. Young PC, Shyr Y, Schork MA. The role of the primary care physician in the care of children with serious heart disease. Pediatrics 1994; 94:284.
  64. Jessop DJ, Stein RE. Providing comprehensive health care to children with chronic illness. Pediatrics 1994; 93:602.
  65. Antonelli RC, Antonelli DM. Providing a medical home: the cost of care coordination services in a community-based, general pediatric practice. Pediatrics 2004; 113:1522.
  66. Blum RW. Transition to adult health care: setting the stage. J Adolesc Health 1995; 17:3.
  67. Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics 2002; 110:1315.
  68. Transition of care provided for adolescents with special health care needs. American Academy of Pediatrics Committee on Children with Disabilities and Committee on Adolescence. Pediatrics 1996; 98:1203.
  69. Olsen DG, Swigonski NL. Transition to adulthood: the important role of the pediatrician. Pediatrics 2004; 113:e159.
  70. Hergenroeder AC, Wiemann CM, Cohen MB. Current Issues in Transitioning from Pediatric to Adult-Based Care for Youth with Chronic Health Care Needs. J Pediatr 2015; 167:1196.
  71. Johnson CP. Transition into adulthood. Pediatr Ann 1995; 24:268.
  72. Bent N, Tennant A, Swift T, et al. Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study. Lancet 2002; 360:1280.
  73. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110:1304.
  74. Healthy People 2020. Maternal, Infant, and Child Health. http://www.healthypeople.gov/2020/topicsobjectives2020/objectiveslist.aspx?topicid=26 (Accessed on May 02, 2011).
  75. McPherson M, Honberg L. Identification of children with special health care needs: a cornerstone to achieving healthy people 2010. Ambul Pediatr 2002; 2:22.