That's such good news! I think. Because that might mean that you automatically qualify for the income portion of the Medicaid disabled program. I hope so.
The first thing at this point might be to find out where your doctor is ordering a caregiver from. If it's health and human services where Medicaid is operated out of, I'd call the long term care number on the health and human services website and ask if your doctor can just order it or whether you need to apply if you're already on medicaid. And whether you'd need to be deemed disabled before getting a caregiver. If you need to apply, they'll probably give you a website to fill out an application on. If you also first need to be deemed disabled to get one, then I'd say I need someone now as my functioning worsens and I am barely able to move without assistance, can I get a caregiver fast tracked now while my case is being reviewed? In my state what that means is that even if they end up denying deeming you disabled, you don't have to pay back the time a caregiver was with you. If they deny, it's a matter of your doctor not giving sufficient diagnosis or correctly documenting your function, and then you can find out exactly what was wrong and ask your doctor to do whatever is needed or find another doctor. You can also get free legal aid for an appeal.
They'd need to do an assrssment with you to find out how many caregiver hours you'd need. That's a conversation where they ask you many questions about your needs. That's the one that might be in person unless you request otherwise. I'd say can I do that assessment with a social worker right away? Because of how your functioning is. Otherwise it might take them some days to assign you one.
Then I'd still speak to the aging and disability resource center to learn more about what's available to you beyond a caregiver. And many more things would potentially be available automatically after being deemed disabled with health and human services. I would try to conserve your voice as much you can. If your husband can make the initial calls to find out first steps, that would be great. I would definitely let your case worker and then later your social worker know that you need to do the assessment in a way that you can. That might mean sending you questions to answer in a written format and later them reading off your answers to you and you only speaking to stop them if they got something wrong or to clarify. Try to be clear that you can only talk sometimes and in small amounts.
You could see what else howtogeton.com has for how else to get a caregiver because there may be other options to get one right away if health and human services can't get you one fast tracked.
https://howtogeton.wordpress.com/how-to-get-a-caregiver/
The Self-Advocate’s Guide to Disability Home Aides/
This resource.. Could they help me get disability? How did you do it? My dr said i need physical therapy lol
I'm just applying now for state disability assistance (the Medicaid aged, blind, and disabled), but my case worker said they ask for records from my doctor or ask them to fill out a form. I speak to my social worker I'm assigned to next week and I'll see what the process is. I have medical documentation and doctors that treat my conditions so I have what I need. Being deemed disabled by the state is much less thorough and easier than being deemed disabled for federal assistance, at least in my state, and good news is that once you're deemed disabled by the state, it's easier and quicker potentially to get deemed disabled for federal assistance. As soon as I'm finished with that state process, I'll apply for federal. I should've been part of both of them for years (so should all of us who've not had it if we needed it), but didn't know they existed or that they applied to me.
Everything I'm learning is from howtogeton. It's written simply and I think it's a good place to start for understanding the federal disability assistance process. There's so many tips. Here's also a guide from the American ME and CFS Society
https://ammes.org/work-and-disability/. And I'm attaching a disability handbook for those with ME put together by the Massachusetts me/cfs and fm association. Take it in in sips... That's what I'm doing. I would ask your husband to read through them in sips on his own time too. First focus on all the assistance from state and local programs to improve your quality of life as soon as possible. Leave the federal program for later, unless your family really needs that extra cash soon. In which case you may be able to get backpay from the time you apply once you get approved. When you do apply, ask for whatever you need from your local social security office and from your family to make the process work for you right now and as least exerting as possible. Are there others besides your husband that can help you go through these guides and talk to doctors and your social security case worker when you decide to apply?
Are you saying physical therapy is the only thing he's been wanting to treat you with? I'll look at your intro post to see your doctor situation.
How to Get Diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome/
How To Save Spoons: A Self-Advocacy Guide for ME/CFS
Testing and treatment
https://mecfsroadmap.altervista.org/
Treatment Overview: a dose of "don't give up, you can improve"