"Where Do We Begin?"

Patient Presentation
A 4-year-old male came to clinic with concerns by the preschool teacher that he would not be ready for kindergarten the following year. The parents were highly educated and very anxious that the teacher said he had difficulty with focusing on tasks that were primarily verbal in nature. He seemed to not understand what was being asked, didn’t ask for clarification, and got frustrated with the tasks easily. The problem appeared to be compounded when it was a multi-step task or when working in a group. The teacher complained that he would finish the task but took an extraordinary amount of time. The teacher also said he had problems sitting still in circle time and preferred unstructured physical activities. The parents and teacher both reported his language skills seemed appropriate for his age in that he could understand and answer with appropriate language to a direct question. His parents describe him as a very active child who would spontaneously run away, climb object or other semi-dangerous activities. Connor scales that the teacher sent showed ratings of inattention and some impulsivity. The past medical history showed that he was bilingual with parents being fluent in both languages themselves. He had passed his newborn hearing test. The family history revealed an uncle with some problems in school but he had finished high school and was a successful small business owner.

The pertinent physical exam showed a happy, sociable child with growth parameters in the 50-75% and normal vital signs. His physical examination was normal. During the interview, the child’s spontaneous speech was appeared normal in content and production. When the physician asked him to name body parts or identify pictures, he could do it but seemed to have more trouble finding the words. Then he was asked to describe what various items in the office did, he again hesitated and would motion the action. The diagnosis of a probable language problem and possibly some attention issues was made. The parents were very anxious and the father said, “Where do we begin?” after he was told of the possible problems. The physician noted how this was the beginning of a new process to increase their understanding of their child, emphasizing that he had both strengths and weaknesses. In addition to a hearing evaluation, the family decided they wanted to be referred to both a speech pathologist and a psychologist who could evaluate him for attentional issues and other possible learning issues. The family would contact the local school and begin the school-based process for evaluating and determining what educational services he may need to be successful in kindergarten. The pediatrician described briefly the special education process including individual education plans and accomdation plans. To help the family’s anxiety, the pediatrician recommended they begin a file to gather all the information about him in one place. “Basically, anything that has to do with him and his learning should probably be all put in one place until you know what you need,” the pediatrician noted. The mother wanted to know exactly what should be in the file. The pediatrician said he wasn’t sure, but to start with the teacher’s Connor’s scales, the evaluation reports, notes from any meetings, information from the preschool or kindergarten, etc. He also mentioned that the family would probably go and do research on their own and recommended to put all of that in the file too as references.

Discussion
Diagnosing and treating learning disabilities is similar to the medical process. A history of problems and concerns is taken, the differential diagnosis considered, appropriate evaluation conducted, hopefully a diagnosis made, development of an educational treatment plan, and follow-up to see how well the treatment plan is working. But like any system that provides care, the educational system has its own vocabulary, processes and rules that need to be understood and gone through.

Special education is a variety of educational and other services that are designed to provide each child with an equal education. While there are many federal laws that have to be followed, each state basically oversees the school districts and other educational programs within their borders, therefore there are some differences between states. An administrative/legal process must be gone through to determine if a child is eligible for special education services, what services are needed and how they will be delivered. There are different names for this process, but it is often called the IEP process (or individualized educational plan) where parents, teachers and administrators together develop an educational plan for the child. This includes what services are needed, how they will be delivered, by whom, what are the expected results and a follow-up timeline to determine effectiveness of the plan (i.e. is it actually working for the child?). There is a similar administrative/legal process for children who may not qualify for special education or an IEP, but still need some special help to be successful in the classroom. This is sometimes called a 504 plan or accomodation plan. In 504 plans, the idea is that reasonable accomdations are made (usually in the regular education classroom) that does not require more intensive special education help. For example, a child with memory or organizational issues is allowed to tape record the class lecture, or a child with attention deficit disorder can be moved to the front of the classroom to minimize distractions. Children with special medical needs may also need accomdations (i.e. a diabetic allowed to leave classroom to check glucose) and therefore may have a 504 plan. A specific health care plan may also be part of their 504 or IEP plan.

Learning Point

Parents who are at the beginning of understanding the educational system for special education are often overwhelmed by the process. Even parents who are well acquainted with the process can need help in organizing the information so they can self-educate, understand the educational plan for their child, and communicate effectively with educational professionals. Organizing all the documents for a child with educational special needs doesn’t have to be difficult or elaborate. The goal is to be able to find the appropriate information easily when it is wanted.

A binder, file folder or electronic file folder is an easy way to put all the information in one place. Some people will keep the information in more than one place – for example, keep all the e-mail communication on a computer and all the printed information in a file folder. If more than one form is used then it is easiest to use the same basic organization and labels. Some people will also choose to transfer the information from one form to another. For example, some people will scan every paper document into an electronic format and then file all the information in one place. Others will choose to print all electronic information and file it in a binder.

Keep the organization consistent, especially if using more than one place to store the information. For example, calling a topic “school evaluations” in both places will make searching easier. Many people find organizing by topic and then organizing within a topic chronologically is a good strategy. For example, the child’s report cards are all together in a group with the most recent at the front. Other people will organize the opposite way, chronologically first and then by topic (e.g. all information for year 2010 etc.)

Keep the labels used easy to understand – Report cards, school evaluations (e.g. special education teacher report), private evaluations (e.g. privately-hired psychologist report), etc. This is especially important if more than one parent/guardian is using the documents.

If using paper, mark the topics to be able to quickly find them with sticky notes, tabbed dividers, colored paper etc.

  • Initial Basic List of Topics
    • IEP or 504 Plans
    • Other plans – health care plan
    • Report Cards
    • Evaluations – school, private-hired professionals
    • Communication – school, private-hired professionals, legal
    • Meeting notes (including telephone) – school, privately-hired professionals, legal, other
      • Pre-meeting notes – questions to bring up, information to provide
      • Who was present
      • What was discussed
      • What the outcome/action plans is/are
      • Who will carry out the outcome/action plans
      • Timeline for carrying out the outcome/action plan
    • Educational treatment – what was done to help, outcome of the treatment. For example, X reading program was used and parts a, b, and c were found to be helpful but d and e made the child anxious.
    • Legal Notices and Information
  • Advanced List of Topics
    • To Do List – what needs to be done and when it is time to check up on someone else
    • Short Chronology – like a medical record of what has happened over time. This is especially helpful when trying to determine when something occurred. Information about the particular event can then be found more easily.
    • List of Contacts – list of people involved, title/role, contact information
    • Contact Log – list of all contacts chronologically, or telephone log
    • General Background Information – newsletters, magazines, websites etc.
    • Commonly used information – blank or partially filled in consent forms that can be copied and signed
    • Examples of Schoolwork
  • Other Ideas
    • If a binder is used, some people will include a pencil bag with office supplies, or even a recloseable plastic bag to keep receipts for tax purposes in.
    • A writing table or extra paper are always useful for taking notes.

Questions for Further Discussion
1. What is the differential diagnosis of language problems or attentional issues?
2. How do you refer a child for special education services in your local area?
3. What services are available for children with special education needs in your local area?

Related Cases

To Learn More
To view pediatric review articles on this topic from the past year check PubMed.

Evidence-based medicine information on this topic can be found at SearchingPediatrics.com, the National Guideline Clearinghouse and the Cochrane Database of Systematic Reviews.

Information prescriptions for patients can be found at MedlinePlus for these topics: Speech and Communication Disorders and Attention Deficit Hyperactivity Disorder.

To view current news articles on this topic check Google News.

To view images related to this topic check Google Images.

Navigating the Special Education Process. LDOnline.
Available from the Internet at http://www.ldonline.org/parents/navigating (rev. 2010, cited 8/23/10).

Organizing Your Child’s Special Education File: Do It Right!. Wrightslaw.
Available from the Internet at http://www.fetaweb.com/03/organize.file.htm (rev. 7/21/08, cited 8/23/10).

ACGME Competencies Highlighted by Case

  • Patient Care
    1. When interacting with patients and their families, the health care professional communicates effectively and demonstrates caring and respectful behaviors.
    2. Essential and accurate information about the patients’ is gathered.
    3. Informed decisions about diagnostic and therapeutic interventions based on patient information and preferences, up-to-date scientific evidence, and clinical judgment is made.
    4. Patient management plans are developed and carried out.
    5. Patients and their families are counseled and educated.
    6. Information technology to support patient care decisions and patient education is used.
    8. Health care services aimed at preventing health problems or maintaining health are provided.
    9. Patient-focused care is provided by working with health care professionals, including those from other disciplines.

  • Medical Knowledge
    10. An investigatory and analytic thinking approach to the clinical situation is demonstrated.
    11. Basic and clinically supportive sciences appropriate to their discipline are known and applied.

  • Practice Based Learning and Improvement
    13. Information about other populations of patients, especially the larger population from which this patient is drawn, is obtained and used.
    14. Knowledge of study designs and statistical methods to appraisal clinical studies and other information on diagnostic and therapeutic effectiveness is applied.

  • Interpersonal and Communication Skills
    18. Using effective nonverbal, explanatory, questioning, and writing skills, the healthcare professional uses effective listening skills and elicits and provides information.
    19. The health professional works effectively with others as a member or leader of a health care team or other professional group.

  • Professionalism
    22. Sensitivity and responsiveness to patients’ culture, age, gender, and disabilities are demonstrated.

  • Systems Based Practice
    23. Differing types of medical practice and delivery systems including methods of controlling health care costs and allocating resources are known.
    24. Cost-effective health care and resource allocation that does not compromise quality of care is practiced.
    25. Quality patient care and assisting patients in dealing with system complexities is advocated.

    Author

    Donna M. D’Alessandro, MD
    Professor of Pediatrics, University of Iowa Children’s Hospital