Getting Organized- What to do with all the paperwork?

During the process of adopting my youngest daughter from China, we got to experience first hand what it is like to not have the appropriate paperwork.  While China is known for its red tape and paperwork, there is a lack of relevant records and lack of access to records.  Hospitals do not keep medical records after a person is discharged (each person is responsible for keeping their own records).  And, even if the hospital had records for my child, it would rare that an adoptive parent would be given access to the records.  Even within the social welfare system in China, my daughter’s records are spotty at best, and there are certainly not many answers to be found in reviewing her records.

Now that my daughter is home in the US, I keep diligent records.  As a parent of a child with special needs, I learned quickly that organization of paperwork is critical (and there is a lot of paperwork!).  A paperwork binder comes with me to each appointment. It doesn’t get used at every appointment, but it has helped me numerous times when the neurosurgeon wanted to know the eye glass prescription or the pediatrician wanted to see a baby photo to assess growth.

We get services through 5 major medical, social, and educational systems.  My role as a parent means I am my daughter’s “care coordinator.”  Keeping records of the medical, social, and educational paperwork in one place has greatly helped me to get all our care providers on the same plan.  It is time consuming and a hassle for each provider to figure out what records they need and for them to acquire them on their own, so I simplify the process and make appropriate copies as needed from my own records.  Occasionally, I have not gotten a written report from important medical visits, and then I have to request the records from the medical records department, but I feel it is worth my time and it is my responsibility to keep my records complete.


paperwork pileMy binder is a work in progress, as you can see the pile on top that needs to be filed still.

  • The front pocket is for upcoming appointments.
  • Blank white paper on the front to write down thoughts and questions prior to appointment and to take notes during appointments.
  • My sections include the following:
    • Educational- school assessments and IFSP (or IEP), including updates
    • Medical- a tab for each major area of need (neurology, therapy, ophthalmology, well-child notes, etc.)
    • Social- adoption history and past social and medical records
  • The back pocket holds reminder notices for appointments that need to be scheduled later.binder to organize special need child information
Paige Hays is an occupational therapist who provides in-home, pediatric occupational therapy services in the south metro area of the Twin Cities, MN. She is a mother of 2 girls, avid DIYer, and a highly skilled and experienced OT. She specializes in working in pediatrics, with diverse expertise ranging from cognition and sensory issues to working with children with neuromuscular disabilities or complex medical needs.