Definitions used with the Populations: Special Health Care Needs
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Specialty Health Care Needs Population: Children and adolescents with special health care needs refers to children who have developmental, physical, learning and/or social-emotional health conditions requiring specialty care. This population also includes those children who are at high risk for special health conditions (a higher statistical probability for developing a disability or handicap). The following definitions have been adapted from Tjossen, T. (Ed) (1976). Intervention strategies for high risk and handicapped children. Baltimore, MD: University Park Press.

Established Risk: Children whose early appearing differences are related to diagnosed health conditions usually of known etiology and well known expectancies for special needs.

Biophysiological Risk: Children whose prenatal, perinatal, neonatal or early childhood events are suggestive of biophysical insults to the developing systems which singly or collectively increase the probability of later appearing differences or special needs.

Environmental Risk: Children who have sound biophysiological systems and whose life experiences are sufficiently limiting or harmful to the extent that, without corrective interventions, they impact a high probability for developmental delay.

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Chronicity: A chronic health condition may include physical disabilities, developmental disabilities (language, behavioral, cognitive, sensory, motor, etc.), a chronic, social-emotional or physical illness. (Hobbs, N., Perrin, J.M. & Ireys, H.T. (1985). Chronically ill children and their families. San Francisco, CA: Jossey-Bass.)

Criteria for defining a condition as chronic physical or developmental:

  • lasts longer than three months in a given year, or necessitates a period of continuous hospitalization for more than a month
  • will not resolve spontaneously and completed (excludes resolvable trauma)
  • manifested before age 22
  • reflects the need to the family or child/adolescent on a frequent and long-term basis of any of the following:
    (a) specific medications
    (b) specific therapies or procedures
    (c) use of specialized equipment for maintenance of health condition or for performance of normal function and activities.

Criteria for defining a condition as chronic mental/socio-emotional (Silver, L. (1988). Scope of the problem in children and adolescents. In: J. Looney (Ed) Chronic Mental Illness in Children and Adolescents, p. 41):

  • emotional and/or organic impairment, manifested by emotional or behavioral symptoms that are not solely a result of mental retardation or other developmental disabilities, epilepsy, drug abuse or alcoholism.
  • continues for more than one year, or on the basis of specific diagnosis is likely to continue for more than one year.
  • results in substantial functional limitations of major life activities in two or more of the following areas:
    (a) self-care at appropriate developmental level
    (b) perceptive and expressive language
    (c) learning
    (d) self-direction
    (e) capacity for living in family/equivalent
  • reflects person's need for a interdisciplinary and coordinated care over time

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Severity: Defining severity of chronic conditions is complex and there are no good reference points that obtain ready acceptance. The following is summarized from Hobbs, N. et al. (1985) Chronically ill children and their families:

  1. The condition places a large financial burden on the family. For the diseases considered here, out-of-pocket medical costs may exceed ten percent of family income after taxes;
  2. The condition significantly restricts the child's physical development. Many of the children here considered will be well below normal height and weight as the result of the illness;
  3. The condition significantly impairs the ability of the child to engage in accustomed and expected activities;
  4. The condition contributes significantly to emotional problems for the child as expressed in maladaptive coping strategies;
  5. The condition contributes significantly to the disruption of family life as evidenced, for example, in increased marital friction and sibling behavior disorders.

A severe chronic disability per IDEA legislation is:

  1. Attributable to a mental or physical impairment or combination of mental and physical impairments;
  2. Manifested before age 22;
  3. Results in substantial functional limitations in three or more of the following areas of major life activity:
    (a) self-care
    (b)receptive or expressive language
    (c) learning
    (d) mobility
    (e) self-direction
    (f) capacity for independent living
    (g) economic self-sufficiency
  4. Reflects the need for a combination and sequence of special, interdisciplinary, or generic care treatment, or other services that are:
    (a) life-long or of extended duration
    (b) individually planned and coordinated
Disability and Handicap are NOT USED interchangeable (Healy, A. (1983) The needs of children with disabilities: A comprehensive view. Iowa City: University of Iowa.)

A child with a disability is not a sick child, but a "well" child with an established health condition that influences the child's physical, cognitive, language, social, emotional and/or sensory functioning. The child is functioning at his/her own fullest potential given the parameters of the chronic health condition. A handicap occurs when the optimal expression of one's potential is interfered/minimized by factors such as inadequate health care or education, ineffective health policies, and/or child, family and community maladaptive responses.

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