Wednesday, December 4, 2013

Challenge Number One for Caregivers

The biggest challenge for caregivers is The Bureaucracy Beast. Once you've engaged services outside your home, especially if these are state agencies, or subsidized care providers like home health workers paid for by Medicare or Medicaid, you are in the belly of The Bureaucracy Beast. A few years ago, desperate to get a paperwork tangle cleared up (because doesn't one paperwork misstep just cascade into total chaos?) I called an emergency help line I found on the internet. That organization was a 501(c)(3) that was about 6 levels below the 501(c) I was trying to get answers from. You're seen those ORG Charts in PowerPoint, right? With arrows pointing every whichaway indicating who reports to whozeewhatzit? In nonprofit realm regarding the developmentally disabled, what we have in Michigan is nonprofits that started as state agencies, and were privatized. Through the decades, those nonprofits hire other nonprofits to farm out the work. And it gets confusing, ineffective and frightening. The Beast grows. And, the goddess forbid that they work together to solve problems, because that is called DOUBLE BILLING. Today alone I used too much time trying to make a caseworker understand that people trump paperwork. She did not understand — may in fact be incapable of understanding. But, by golly, she did set up the next round of next level private contractor nonprofit interviewers clutching their paperwork to fill out our SIS or PCP or LMNOP. Meanwhile, my father got his new round of medications from the VA. He's concerned because something is different about the dosage and instruction labels. He knows, because this is not his first rodeo. I called the VA to talk to the doctor. A nurse called me back. She's a third party. We've got an entire day of 3rd party. I'm done with 4rd, 9th, 5th party. If you're not who I called, get off my phone. Doesn't this drawing look like a Beast? It is made of words that cover the officious piece of caregiving, and the agencies that shuffle paperwork from one nonprofit to another. I know what's wrong with our healthcare system. Nobody is face-to-facing with their clients, and may in fact not believe they are customers. I can't believe I'm going to say this but we need a nonprofit ombudsman that does nothing but shuffle through the paperwork for the elderly and senior caregivers. I feel so sad for people who don't have the ability we have in our house to 1) get through the red tape, 2) get the services we need, and 3) not have anyone new added to the family members who need help. Once more today I remember that I have told my friends that if I end up in a straitjacket, please make sure it's a purple one.


  1. Hi Linda, with your experience in caregiving I'd like to ask a question but can't find any contact info on your page. If you could, please email me at mtrucillo(at)recallcenter(dot)com.


    1. Ask your question here, and I'll do my best to answer it.