The Paper Chase
By Janet Bain

As summer plans are in the works, you may want to consider allocating some of that time to tame the paper monster that has been growling all school year. Although not the most glamorous or exciting use of your time, come fall, you will be glad you took the time to organize.

Paperwork and summertime don't seem to go hand in hand, but for parents whose children have learning differences it could be a necessary combination. The last day of school comes along with the backpack in desperate need of emptying and a parent contemplating the stack of papers that have accumulated in the bag, as well as an unused file drawer, during the school year. What do you do with all that paper? Where do you put all of the school reports, psychological evaluations, copies of the Individualized Education Program (IEP) and 504 meetings notes? Beyond all of the other paperwork, children with disabilities may have complicated medical histories which lead to larger-than-normal medical files to track.

Choosing one time of year for a major review of records to keep them current and up-to-date is a good strategy. The end of the school year may be the best break in activity and meetings to organize records from both the past school and healthcare year and to anticipate the next year's needs. Some parents have found that in duplicating the system while creating the files for one year, the following year's filing can be much easier. After creating a good system, paperwork can then be filed throughout the year which means, in the summer, all that is required is a review.

What are the benefits of keeping records?
When partnering with physicians and schools, parents must be knowledgeable and keep accurate records. It is difficult to think clearly and remember all pertinent details when emotions are involved and when a child's services hinge on the documentation made available by the parents. Sometimes the parents' personal records can be used in the event of an information dispute with a school. These records can also support parents in any decisions to be made as the primary coordinator of their child's health and educational services.

Record keeping is directly related to assessment and goal setting whether in school or for healthcare purposes. Consistent, ongoing documentation of student work and progress ensures that teachers will have evidence of the student's progress. This evidence becomes vitally important in communications with students, parents and administrators as the years go on. Additionally student's work can and should be used when teachers have questions about specific programs that might be needed when referring students for special services.

In his book, The Paper Case: Managing Your Child's Documents Under the IDEA, Robert K. Crabtree wrote, "From kindergarten to high school graduation, the accumulation of IEP's, evaluations, progress reports, correspondence, notes, journals, samples of a child's work and all medical records might fill several drawers of a file cabinet or take up most of the available shelf space. Parents may be tempted to throw out papers when they get out of hand, but this may be a mistake. Even the oldest documents in a child's history can sometimes help make a case for increased or different services under IDEA. Applying for college may require use of old records in order to receive some disability services." Crabtree emphasizes the understanding of the relative importance of different documents and the need to organize them in a sensible manner. He suggests several areas in need of a separate file in your home filing system. (See below) Keeping an organized filing system for your child is also important because you cannot presume that you will always live in the same area or have the same doctors, educators and therapists. Each physician, specialist, therapist or other service provider keeps a chart for each child and has a unique form of record keeping. By maintaining these documents, parents will have their own historical record to use and refer to throughout their child's life.

Medical records
Good medical record keeping starts at your child's birth which can be a very distracting time. Enter the hospital prepared for paperwork. You may want to put a three-ring binder in your hospital bag to be used right away for the mass of paperwork that accompanies the birth of your child. Laboratory and other test results at the hospital will be forwarded to the physician's office unless one has not been chosen. Keep all discharge paperwork from the hospital and bring them, or copies of them, to the baby's first appointment. In the world of medical records there are many examples of the importance of keeping personal and organized files. For instance, there are certain key elements of a child's medical record that are required for entrance into public and private programs in all Georgia schools. These include a current immunization certificate (Georgia Department of Human Resources, Division of Public Health Form 3231) and the Hearing/Vision/Dental (Form 3300) screening. Knowing where these records are kept and how to access them is very important. Medical releases for camps, school- affiliated sports activities and college entrance applications have become much more detailed and time consuming to complete in the last few years. Keeping up-to-date records can alleviate many problems in these areas. On a similar note, medication forms are required at schools and camps for children whose prescribed medications must be dispensed during the day. Examples include a child that needs special injections for bee-stings or a child that requires asthma treatments. Consulting the camp or school's Web site or clinic for appropriate forms prior to the start of camp or school is always a good idea.

A pediatric office chart is a child's personal book, organized by chapters that document a history of healthcare visits. The information in the chart includes patient information, doctor's notes, visit history, immunizations/hearing/vision screening reports, sick-child visits, medical test reports, correspondence, phone calls and insurance and referral information. The correspondence section of a child's medical chart contains documentation and letters from the specialists that your child sees. This could be an ear, nose and throat (ENT) physician, speech-language pathologist (SLP), occupational therapist (OT) or psychologist. These specialists inform the primary care physician (PCP) in writing of their findings upon examination of a child. It is important to indicate, while in a specialist's office, that copies of the correspondence should be mailed to the home address, as well as the PCP. If there are other physicians that should be aware of the findings of a specialist, have their names and mailing information available at the visit and sign a release for such information to be forwarded to these specified persons. Making duplicates of some forms or documents can also help in record keeping. Depending on the frequency of visits to specialists and the amount of correspondence generated, this paperwork might be better organized in sub-files under individual specialists' names.

School records
Scholastic record keeping begins the first day of school. An uncommon, but important, end-of-year routine to develop is suggested by attorney Brice Palmer on www.dphilpotlaw.com. He recommends visiting the school to peruse school records, making copies of notes and assessments not otherwise documented. At that time, obtain copies of documents that are not already in the home file in case they are inadvertently lost or altered in the future. Crabtree lets parents know that they have the right to see their child's records and may also have the right to ask that a certain document be removed from their child's school records.

"It can take years for parents to realize that they should have kept better notes of meetings, telephone calls and important events in their child's life," wrote Crabtree. "If a young child has a learning disability, get ahead of the game by developing the habit of documenting from the first parent-teacher meeting. Parent notes may be important later when needed to reference an accurate description of what key people said at a team meeting, at a parent meeting or in an evaluator's office. "

Good filing begins with good notes
"Some parents keep an educational and medical journal with dates, short descriptions of events or conversations and the names of people who were involved. This doesn't include every tiny detail of a child's life, but a well-kept journal can help a parent understand or explain to others how the current situation developed," suggests Crabtree. Bring the three-ring binder to every doctor's appointment obtaining copies of the visit and to every parent-teacher meeting. Have all current questions written down. Have loose-leaf paper in the three-ring binder for note taking. Don't count on remembering all pertinent comments from each meeting or consultation. Notes can help fill in any blanks when you are in information-overload. A record-keeping worksheet can help start a file of medical or educational information. (See below)

Filing systems vary with lifestyle
Children's artwork is priceless and a parent decides which pieces to keep. Some school records and medical records can prove to be priceless as well. Ask for advice from the professionals you visit about the types of records you need and their relevance to your child. Categorize and file in separate binders according to what common sense dictates. Some parents use files labeled for elementary, middle and high school education. Others have far too many forms for such a simple system. If there are a number of meetings per year, give each year its own file. Other parents find it more beneficial to file under specialist areas: OT, SLP, psychologist, tutor and others that are important in the child's development. Some suggest filing by the year, then subfiling by category (psychoeducational evaluations, IEP, SLP report, report cards). Depending on a parent's organizational style, file folders, three-ring binders, accordion folders and notebooks may be used for the individual papers kept in a specific box or file drawer. A portfolio, a collection of varied materials that show what the student has learned, experienced and accomplished, is a useful tool for many. It is also important to make a separate file for each child.

Computer software storage systems can be purchased that will create a permanent, comprehensive record storing all the information about a students' learning difference. If your school has the technology, all the members of a student's team (Inter Related Resource (IRR) teachers, SLP, OT) can have access to the same information found in one place to improve communication. The team can add information year after year when communicating about the student and secure it on a disc. Some software programs track the success of each IEP meeting and note the specific settings needed to ensure continued success (www.assistivetech.com).

As your child's primary advocate, it is important for you to realize that the ultimate responsibility of good documentation falls on you. Creating and maintaining a personal information filing system for your child really isn't complicated. Records can be as simple as a daily journal or as elaborate as a purchased computer program or notebook system. It can be time-consuming in the beginning but, if you invest the time to develop a system that works with your family's needs, the pay-off will be a better experience for your family as you attempt to navigate the world of learning differences. Is it possible to have too much information on your child? Perhaps, but the old adage rings true: "Better safe, than sorry."

As a medical records manager, what I hear from parents is "I sure wish I knew this earlier." One family in particular was impacted when their doctor's office did not survive Hurricane Katrina. It had not occurred to them to have a copy of their child's history in a "safe" place. This was a lesson learned the hard way. It is never too late to start a good paperwork filing system, whether medical or academic. What better time to start than during the summer break!

Janet Bain is the mother of two boys, one of whom has learning differences. She is the Medical Records Manager for Dunwoody Pediatrics in their new Alpharetta location. She counsels with parents regarding their medical records needs and can be reached at medicalchartforchildren@comcast.net

Documents to Keep on File

• Individualized Educational Programs (IEP's) and other official service plans
• Evaluations by the school system and by independent evaluators
• Medical records
• Progress reports and report cards
• Standardized test results
• Notes on your child's behavior or progress
• Correspondence and receipts of correspondence received
• Notes from conversations and meetings
• Documents relating to discipline and/or behavioral concerns
• Formal notices of meetings scheduled to discuss your child
• Samples of schoolwork
• Invoices and cancelled checks
• Public documents
  (www.fetaweb.com/03/paperchase.crabtree.htm)