USING NEUROPSYCHOLOGICAL TESTING TO COORDINATE EDUCATIONAL SERVICES FOR PEDIATRIC PATIENTS WITH
SICKLE CELL DISEASE
Shonda King, MSW, LSW
The University of Illinois Medical Center
Comprehensive Sickle Cell Center
Chicago, IL
It has been the school of thought for many years that sickle cell disease does not have an effect on the academic performance in children;
however, modern research may show that this is not the case. At the University of Illinois – Comprehensive Sickle Cell Center, we recognized
this in our population and thus have put together a comprehensive program to include Neuropsychological Testing [NP] to evaluate the
patient’s educational needs and determine what services are appropriate to help them be successful in completing school and increasing their
overall quality of life. NP assessments are performed when indicated and have been very valuable in helping set up additional services for
patients in our pediatric clinic. The assessments help to determine academic functioning, cognitive functioning, behavior problems, and gives recommendations on possible interventions. School systems often do testing with students to determine their academic level, but an NP assess-
ment is more thorough in that also covers the following areas:
· Intellectual Functioning
· Verbal Language Fluency
· Attention and Concentration
· Processing Speed
· Memory
· Executive Functioning
· Measure of Academic Abilities
· Motor Functioning
· Emotional Functioning
Once the testing and summary is complete, Social Workers take the recommendations that are given by the Psychologist and develop a service
plan for the child. Getting pediatric patients tested while they’re in their primary grades will make the parent, school, and hospital care team
aware of academic and behavior problems early on and therefore services can be put in place and modified as often as needed. In addition to
this, an NP assessment also provides information needed to:
· Obtain guardianship of an adult child if there are concerns that they will not be able to make their own healthcare decisions upon
turning 18.
· Justify additional academic support from the patients’ school.
· Complete 504 planning and IEP’s.
· Justify referrals for vocational rehabilitation and other rehabilitative services
· Provide additional documentation for Social Security Administration for disability determination.
· Refer the patient to TRIO programs or the Office for Students with Disabilities at 2 and 4 year institutions of higher learning.
At the University of Illinois Comprehensive Sickle Cell Center, we’ve developed the following criteria for NP referral and testing:
1. During routine follow-up [or as requested by the family or physician], social work will conduct a psychosocial assessment to
determine if there are any educational concerns that may warrant testing or service referrals.
2. A referral is given for neuropsychological [NP] testing if the patient has a history of any of the following:
· Stroke
· Acute chest
· Frequent hospitalizations
· Behavior problems (at home or school)
· Developmental delay
· Frequent truancy or missed days from school
· Low academic scores on standardized tests
· Repeat of any grade
· General concern by the family, physician, or school
· Failure of one or more grades
3. Once it is determined that the child will need testing, the Pediatric RN will make the official referral to the Department of Neurology
and Rehabilitation. The Department contacts the family to set the actual date and time of testing. Once the testing is documented,
the Clinical Psychologist forwards a copy of the assessment to the nurse.
4. After the NP assessment is completed and it is determined that the child has some deficits, SW follows-up with the parents and
arranges a meeting with the school social worker for an IEP meeting. Other services and recommendations [such as behavior therapy] are arranged as needed.
From a social work perspective, it is very important that the NP assessment is completed while in the pediatric setting and early on in the child’s
academic years. By completing the assessment early, the child can be tested before they enter their high school years and services can be modified
to reflect new recommendations.
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