NeuroTalk Support Groups - How To Survive

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- - How To Survive (https://www.neurotalk.org/myasthenia-gravis/257771-survive.html)

Having a battle here in Iowa with receiving care in many way, all ways. My new Medicaid caseworker let my only caregiver quit on Thursday. I dare say she encouraged it. I was supposed to do a quarterly check in with her on Friday. I texted her that it had to be rescheduled so that my daughter can sit in on the this phone meeting. Bad idea to talk to someone this incompetent alone. My caregiver had a billing issue that my caseworker said needed resolution and I said I would talk to her , Marci, about it. I delayed doing this out of my illness struggles and knowing Marci would freak out and get scared thinking she was in trouble. It is a mess. It took so long to fin this person that Medicade would pay for. We had been paying cash to anyone we could find for months. And this caseworker is saying this is my fault after listening to Marci who made up stories to be sure to avoid the billing problem in April. The lack of loyalty here from caseworker is so so upsetting me. Sculptor 44

Medicaid rules are different from state to state, and I know only a little about Medicaid-funded caregivers in 2 western states, but out here there's often an agency that sends out the helpers, and the client deals with the agency. That's how it worked in WA. In OR there doesn't seem to be an agency, and the client works directly with the caseworker as you are doing.

The trouble with this is that the caseworker often doesn't know that much about the situation. You might have to state your case at some length to the caseworker if that person will listen. If you seem to be getting the brushoff, you can ask to speak to that person's supervisor. Then start over, stating your case to the supervisor but without complaining about the caseworker (because you don't want to alienate the caseworker, and going over her/his head to the supervisor is apt to be resented).

You're taking a risk by going this route--the risk of alienating a caseworker you may have to continue to deal with--but if you can be extremely polite about it, it's worth a try.

It sounds as if you've had quite a problem even getting a helper, and I hope that some prompt action will be taken to resolve the dispute.

When I had helpers, there sometimes was a bad spell when I went through a series of unsatisfactory situations, and then I'd have better luck for a while. Some helpers lasted several years. I've heard of situations where a helper stayed on with a client for 10-20 years. These were Medicaid-system helpers.