The Paper in Chronic Condition/Disability Management

Keeping people in the loop is tough work. If you think that the day in day out maintenance of a chronic disease is tough, add three million doctors, eight thousand charitable organizations, approximately 220 federal state county and city entities, and your school officials and day care providers and try keeping all of them in the loop. All the time. Progress notes. Diagnoses. New evaluations. Accordian files, notes coming out of my ears, and countless faxes. Disease/illness/disability/chronic condition management and communication is a lot of work, and uses up a hell of a lot of paper.

In my house we have 3 chronic conditions and one childhood disability managed by at least two specialists, three therapists, and one primary care physician, per CHILD. Now take specialist #1. Specialist #1 sees your child, assigns a diagnosis, and establishes a treatment plan. You now have to obtain the medical records for this visit and send them to specialist #2, Therapist #1 #2 & #3, Primary care physician, SSI office, Medicaid office, County social worker office and if there was an evaluation performed where results are available, you should send those to the school case worker and copy his teacher, pertinent specialist at the school, & day care provider (KidStop at the school). It doesn’t stop there. If you are sending this paperwork to anyone that requires this information for some time-sensitive reason, you need to have some sort of CONFIRMATION that they RECEIVED said documents. Ick. Bad. Ick. This also goes in circles. Say the school performs an evaluation? You get the results of the evaluation, send them to specialist #1, specialist #2, primary, therapists, SSI, Medicaid, and county social worker. Say specialist #1 feels that the evaluation results could affect the child’s diagnosis? Well then you head on up to specialist #1 for a doctor’s appointment (far, far away) to be assigned a new, more valid diagnosis. The cycle begins ALL OVER AGAIN. It never ends.

So why am I thinking about paper right now? Well, here’s the deal. Sandis had his IEP meeting this morning. It went fairly well, and when the draft of the IEP is complete I’ll know better how I feel about it. I was sent home with a 12 page document detailing the evaluations performed and their results along with outlining Sandis’s specific deficits and needs. Great information and just the information I have been waiting for. Sandis’s psychologist at the U of M diagnosed Sandis with PDD-NOS but said that upon receipt of his IQ and adaptive evaluations she would revisit the diagnosis to ascertain whether it should in fact be Aspergers. So I have this mountain of paperwork to send to the U of M. I also have a mountain of therapy progress notes to send to her. I also have to send all of this paperwork to SSI for Sandis’s application. Add to that I have to send it to Medicaid for his TEFRA eligibility. It is a mountain of paper, and suddenly I have a lot of letters to write. Cover letters for faxes. Cover letters for mailings. Oh, and thank you letters to everyone and their dog detailing the events in the IEP meeting so I have my own written trail.

Now add Gracie who also has a pending SSI and TEFRA application. (I don’t expect Gracie to get SSI, but I have to apply as a part of the TEFRA application.) I have to obtain all of her medical records since October, all of her progress notes from therapy, and she has to have a physical done by her primary care doctor. After said physical, I must request the medical records to be sent to me so that I may send them on with her TEFRA application. It never ends. I am in a paperwork nightmare. I’m not certain that even getting a file cabinet will help at this point. I’m thinking that perhaps I should hire a secretary (that is willing to work for candy and smiles!)

There has got to be an easier way to make sure that everyone gets what they need. I’m skeptical, but it just seems irrational that all of this would be so time and paper consuming, un-user-friendly, and ridiculous to keep everyone in the loop. Ah well. In my next life I will be the master of the medical records connection. For now, I’ll have to settle for what I have as I limp along trying to meet the needs of the system.