My daughter’s respite services were recently put on hold. I heard a couple of different reasons as to why but I’m not exactly sure. A couple of weeks into the “hold” comes the usual request for paperwork. My daughter is a young adult and I have saved all of her paperwork since she was born. Yes, I have an extra large Tupperware tote that is filled with old IEP’s, court cases, custody decisions, psych evaluations, behavioral health evaluations, you name it I pretty much have it. I have to remind myself not to get upset when an agency asks for paperwork. This time the respite service agency wanted a psych eval dated within the last couple of years, and they requested I fill out a new application for services so they can evaluate the need for services. After submitting that stack of papers they sent me a download of instructions to submit more papers, this time they wanted a physical evaluation and another application filled out which was an update to the same applications they have on file (or I guess they have on file). For parents of children with disabilities, tons of paperwork is just part of the job. Between Individualized Education Programs (IEPs), doctor’s appointments, and therapy sessions, there’s a lot to keep track of. And that’s not even including the mountains of paperwork that come with applying for disability benefits.
It can be overwhelming, but it’s important to stay organized and on top of things. After all, as the parent of a child with special needs, you are your child’s best advocate. My advice to all parents/caregivers is to keep detailed records of everything related to your child’s disability, from medical appointments to conversations with teachers. Do not toss anything in the trash because you will need it. Someone somewhere will ask for it. When my daughter was younger and I was busy accumulating my Tupperware tote full of paperwork, I would get aggravated by the agencies asking me for paperwork now I just get out my tote and copy what they request, drink my wine, and try to relax.
There are lots of resources out there for parents of disabled children. Take advantage of respite care services when you need a break, and reach out to other parents for support and advice. And KEEP YOUR PAPERWORK FOREVER!
