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By Derek Graham
Have you ever felt badly because a professional or caseworker said something and you felt like you should have known what they were talking about? In reality they may have lost you early on in the conversation but you were too embarrassed to speak up. You felt like they may have said some of this before and you are a bad parent or advocate if you don’t remember it from the last meeting. Being a good advocate for a family member or being a good self-advocate requires us to have the courage to speak up and ask questions when we are confused.
As the parent of a child with a developmental disability and as a professional who works in the developmental disability system daily, I sympathize with parents because the system has a huge acronym and slang problem that sometimes creates a language barrier between consumers and professionals.
Sometimes our system can sound something like this:
Megan’s IS called because IDEA requires an ETR which the school finally finished. That means that the team can have an IEP meeting on Tuesday. A case manager from OOD will attend to talk about transitioning. Megan’s SSA from FCBDD will also attend because what the IEP team decides may impact Megan’s ISP. After the meeting the SSA reminded Megan’s parents that she needs a new OEDI because she is too old for a COEDI. She also reminded Megan’s parents that Megan needs a new QDDP so that we know how many billing units Megan will have under the IO waiver for the next year. There was talk about maybe being a level 3 funding range, but the dad was confused because he thought it was called a Level One waiver and didn’t know there were ranges. The SSA mentioned DODD and ODM rule changes that impact how EM billing works for all HCBS waivers and the parents thought the OOD case manager said something about Medicaid paying for OOD services. The SSA gave Megan’s parents some literature about a new day-hab in the area. The SSA told the parents she heard good things about the day-hab from a QIDP at a really good ICF but nevertheless, she still thinks Megan should pursue supported employment. The parents were also told not worry if they got a letter from FCJFS that states a prior auth has been denied again. The parents were then asked to sign the plan which they did because after all, why wouldn’t they.
Upon returning home, the parents realized they understood less than 50% of what just happened around them.
Ever felt like the parents in the paragraph above?
Sometimes part of being a good advocate is having the courage to ask those around us to slow down and stop using acronyms. Overuse of acronyms and slang is a growing problem and you contribute toward solving the problem if you ask the professionals around you to slow down and stop using acronyms (or at least explain them when they do). Don’t be afraid to make professionals repeat themselves and explain the same thing over and over.