Lessons Learned: Record Keeping

by Angie Arlington

As a parent, paperwork can be overwhelming when you have a child with diverse abilities. My personal journey with my son made me realize how valuable documents are for many reasons. I started two binders when my son was young-one for medical and one for education. This worked for the first seven years and then I started keeping documents in file folders. Eventually, I went to a two-drawer file cabinet for all his documents.

I thought I had been doing a great job until he turned 18 and we applied for Social Security. I have always agreed with the idea of having a “medical home”-your child’s main doctor should be copied on everything from other doctors. When I viewed the documents in his record, I found that almost 95% of my son’s mental health records were never shared with his pediatrician!

Many doctors have patient records accessible online now and that is better than everything being saved on paper. One of the therapists my son saw in middle school had a fire and all the records had not been computerized. I learned to never assume that patient portals will have all records backed up. Years ago, two different medical facilities upgraded to new programs and some information did not transfer over.

When in doubt, save everything related to your child because getting access after the fact can be difficult. We hired a lawyer to help us file for social security and the system wanted everything possible. I spent a lot of my own time getting records from different places because my lawyer did not send requests to the correct offices and did not persist when she received no response.

I found that it is legal for independent mental health providers to destroy records after only two years--I wish they would have sent me a notice! I had assumed that all patient files were kept for five years, so now there are gaps in the records I did obtain.

My son’s records from attending our local school system from first-10th grade were over 100 pages. Reading it, I found several items duplicated, especially test scores from all the tests the state and district require kids to take each year. There were only a few years’ worth of IEPs and report cards, but a lot of attendance notices, since he missed a lot of school due to appointments and not being well. I was astonished that there were no records from school counselors, vice-principals, or special education teachers. No notes from when I came in and talked to people about problems. Nothing to indicate how severely his mental health was impacting his learning. With all the phone calls and meetings I had with different school personal, there should have been pages and pages of incident reports and summaries of issues addressed. To my dismay, I also realized that I called more than I emailed because no one would return my emails. So again, I had no proof of what really went on at school.

Information you should have hard copies of:

1. Anything from the Indiana First Steps Program (IFSP), including daily reports from therapists and any kind of communication by email or mail. (Records can be destroyed after five years by providers.)

2. Any doctor (pediatrician, family doctor, etc.) that your child sees yearly at least. (Medical records can be destroyed in five years after the last visit.)

3. ABA Therapy- All communication via email, reports, financial records, incident reports, the initial evaluations, and most importantly, any changes in goals or behaviors while in the program.

4. Mental Health Evaluations-copies of testing, reports on progress. Get copies of complete medical records when you leave. (Records to be destroyed in two years.)

5. School System-report cards, 504 or IEP for every year, quarterly reports, copies of communication with teachers and school representatives. Communicate via email instead of calling so details are recorded. All paperwork from special education teachers and others who work with your child. Also, ask to see your child’s school file to be sure it is correct and see what documents are in it vs. what you assume is in it. Parents should always receive a copy of any incident reports immediately!

6. Hospital Records-anything given to you from ER visits, outpatient tests, in-patient results, discharge papers, and any type of bills for services.

7. Specialists-all paperwork (if you stop seeing a doctor, request a copy of your child’s records within a year.)

8. Medicaid and Waivers-keep copies of any paperwork, emails with case managers, and records of any services received. This should add up, as quarterly meetings are required by the state. Anything you sign, get a copy of it!

9. Medications-Most pharmacies can give you a printout of all medications filled for the year. You can use these records to record any ineffective medications or side effects your child experienced. This is also helpful if insurance requires you to take older, cheaper medications before covering a newer, costlier one.

Remember, you have all the power if you have paperwork from everyone working with your family. Nothing can “disappear” or “not exist” if you have copies before you need them!

24 Special Needs Living • November 2021