Psychosocial Care for People with Diabetes. Deborah Young-Hyman
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Intellectual Performance
Children with type 1 diabetes (T1D) generally have average or above average intellectual functioning (intelligence quotient [IQ] >85). With an average score of 100 and a standard deviation of 15, individual and family differences in IQ exist, similar to those in the general population (Overstreet 1997a, Northam 2001, Gaudieri 2008). Although overall IQ scores of children with T1D are in the average range, they are slightly lower, by ~3 points, than scores of children without diabetes. A group difference of this magnitude has little clinical significance, although it is of scientific interest.
The Wechsler scales are the most commonly used ability tests in school systems. Different versions are available: for young children <7 years old, the Wechsler Intelligence Scale for Preschoolers (WPPSI-III) (Wechsler 2002); for school-age youth 6–16 years old, the Wechsler Intelligence Scale for Children–IV (WISC-IV) (Wechsler 2003); and for older adolescents over age 16 years, the Wechsler Adult Intelligence Scale (WAIS-IV) (Wechsler 2008). Other scales are available but are less commonly in use, such as the Kaufman Assessment Battery for Children–Second Edition (K-ABC–II) (Kaufman 2004) and the Differential Ability Scales–Second Edition (DAS-II) (Elliot 2007).
Learning Disorders
For most children with diabetes, academic achievement is at grade level (McCarthy 2002) or consistent with IQ (Overstreet 1997b). However, ~5% of children in the general population experience learning disorders in reading, mathematics, or written language with achievement that is substantially below expectation for age, schooling, and level of intelligence (American Psychiatric Association [APA] 2000). Some children with diabetes, especially those with disease risk factors, may show a higher incidence of learning problems (Holmes 1992, Lin 2010).
Assessment of Achievement and Learning Disorders
Diagnostic criteria for learning disorders vary by local educational/school districts. However, the national Diagnostic and Statistical Manual of Mental Disorders IV (DSM IV) criteria of the APA (2000) include the following: average intelligence with academic achievement substantially below IQ, age, or schooling. Often evidence of cognitive “processing” or neuropsychological difficulties (i.e., attention, memory, learning processing problems) is present. A broad survey of skills in language, executive function/planning and attention, visual spatial functioning, memory and learning, and sensorimotor skills is commonly assessed with A Developmental Neuropsychological Assessment–Second Edition (NEPSY-II) (Korkman 2007). Specialized measures of processing skills such as memory can be assessed with the Wechsler Memory Scale–Third Edition (WMS-III) (Wechsler 1997), the Wide Range Assessment of Memory and Learning–Second Edition (WRAML-II) (Sheslow 2003), and the Children’s Memory Scale (CMS) (Cohen 1997). Often these more specialized neuropsychological tests are administered by referral only to a specially trained neuropsychologist outside of the school system. Criteria for special classroom assistance typically require a “clinical threshold” to be reached, usually performance on individually administered achievement tests that is 15 or more points (1–2 standard deviations) below expectation for IQ (APA 2000). Widely used achievement tests available in most school systems include the Woodcock Johnson Tests of Achievement (WJ-III-ACH) (Woodcock 2001), the Wide Range Achievement Test–Fourth Edition (WRAT-4) (Wilkinson 2006), and the Wechsler Individual Achievement Test–Third Edition (WIAT-III) (Wechsler 2009). Like IQ tests, these measures typically provide standardized scores with an average score of 100 and a standard deviation of 15. For most children with diabetes, learning disorders are likely to be ”subclinical” and below the level of severity required for formal diagnosis (APA 2000). Medical insurance often covers the cost of psychoeducational assessment administered by qualified personnel. Local school psychologists provide another cost-free option, although this latter option may entail a long wait for services. Finally, parents may be referred to a licensed private psychologist or a clinic-based psychologist such as in a mental health agency. Reevaluation of learning status is required every three years for children formally diagnosed with learning disorders.
Remedial Services
Studies from the early 1990s document a higher incidence of academic classroom assistance for children with diabetes (Hagan 1990, Holmes 1992). Medical management recommendations were modified for younger children, particularly those under the age of 5 years (Ryan 1985, Rovet 1988) to avoid episodes of severe hypoglycemia that lead to seizures or unconsciousness (Silverstein 2005). In the last 10 years there have been few or conflicting studies of the incidence of specialized classroom assistance in diabetic youth (Crawford 1995). Thus, earlier studies may no longer accurately reflect the current incidence of special classroom placement.
The Education of All Handicapped Children Act of 1974 (PL 94-142), now called the Individuals with Disabilities Education Act (IDEA), mandates that all states provide a free appropriate public education (FAPE) in the least restrictive environment for children with a handicapping condition, such as special educational or learning needs, to receive federal funds. Services may be mandated based on borderline or lower intellectual abilities or a significant discrepancy between an individually administered IQ score and an achievement test score along with cognitive processing difficulties, such as clinically significant memory problems. If an individual meets these criteria, services may be provided and an Individual Education Plan (IEP) formulated. An IEP documents the special services or accommodations to be provided for a child in the classroom. Only children with diabetes who have a clinically diagnosable learning disability will qualify for these intensive school services. More information about IDEA is available at www.ed.gov/offices/OSERS/OSEP or through the American Diabetes Association (ADA) at http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/written-care-plans.
Most children with diabetes qualify for a broader, less intensive range of educational services or accommodations through the Education Rehabilitation Act of 1973. This Act forbids discrimination against individuals on the basis of a “disability,” which can include temporary disabilities such as a broken leg. Under Section 504 of the Act, students with medical conditions can receive accommodations to participate in academic and extracurricular activities the same as other students. Diagnosis with a formal learning disability is not required to receive educational accommodations with a 504 Plan. Often the foundation of a 504 Plan is a Diabetes Medical Management Plan (DMMP) or physician’s order that prescribes recommended school-based medical care plans. The DMMP is the medical basis for an Individualized Health Plan (IHP), written by the school nurse, which specifies what, where, when, and by whom diabetes care tasks will be provided in school. The IHP provides medical care at school but not educational accommodations. A diabetes 504 Plan provides written guidelines for diabetes-related educational accommodations that are protected under federal law. Common services and exceptions may include storing and administering insulin and blood glucose monitoring equipment or supplies at school as well as allowing students to carry and eat snacks in the classroom. More frequent school absences are permitted to accommodate routine medical visits, and extra bathroom breaks or trips to the water fountain are usually allowed. Private schools that receive federal funds must also be responsive to these student-related requests. A teacher, psychologist, school nurse, or principal can organize a 504 meeting. Before a meeting, parents can write a letter that explains their child’s diabetes-related needs and how they can be accommodated in school. If necessary, a physician can write a letter to explain unusual medical needs. More information is available about 504 Plans at http://www.isbe.net/spec-ed/pdfs/parent_guide/ch15-section_504.pdf or via the American Diabetes Association at http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/written-care-plans.
Neuropsychological Skills Associated with Learning Problems
Despite generally average IQ scores, subgroups of children may have a higher risk for specific cognitive processing problems or neuropsychological difficulties, in areas such as visual spatial or memory skills. Clinically significant difficulties are defined as more than 15 points below intellectual level (1–2 standard deviations). The following difficulties have been described in subgroups of children with diabetes; individuals may or may not be affected.