Need help for another member with CFS-help!

[Misfit Toy]

Hi everyone,

Another CFS/ME person lives in my area with ME. She is not doing well and may have to soon leave where she is living. It wasn't an ideal situation and hasn't been.

She has SEVERE ME/CFS and POTS. Where, or who should I call for a living arrangement for her? She may need nursing home care. In fact, that is what she wants. She is young. I am not sure how to do this.

She doesn't have many financial resources. She has health insurance.

I would like to help her, but I am not sure of how since I have never had to find nursing care (or be in a home) and she is thinking of a shelter, which I think with POTS would not be a good idea. She can't really take care of herself completely. She is bed bound.

I am worried about this person and need guidance.

I am not qualified for this, as in I am not sure who to call and would love any suggestions. She is quite sick, so I am just trying to brainstorm and help her out because she has much less energy than myself.

 

[Gingergrrl]

Sadly in the US these people fall through the cracks and no housing options really exist for someone like her and I speak from (former) professional experience.

Is there any chance of her living with family or hiring an aide to come to her home for bathing, shopping, cooking etc.

Sometimes if you call the multi service senior center in her area (even if she is not a senior) but explain she is homebound and disabled they can get her some resources and if she gets Medicaid she should quality for IHSS.

 

[beaker]

You also might try : Independent living center --google for one near you . or catholic charities or jewish community centers some groups like that who help those in need. They may assign a social worker to help. In fact you might be able to get a social worker at the local hospital ( does she have a dr. that will write a script for one so she can have her insurance cover?or there may be one elsewhere she can get a referral to in order to get help. )
And yes you can apply through county services if you have medicaid to get in home aides.

In fact, if all else fails, she can go to ER and get checked in. Then they have to give her social services. If she can't take care of herself and she has no one to do so, they can't send her home and will have to find her help. At least that's how it works around here. She may get temporary visiting nurses and aides through that ( depends on her insurance how long they will come in and how much and what they will do . they usually have social workers too ) If nursing home option : She may have to surrender pretty much any savings and get medicaid and sign it over to nursing home if that is option chosen. There are some places that are for younger patients. OR assisted living centers type deal.
I personally would try to stay in own apartment. There won't be much by way of understanding of her illness and as sick as she may be, she could end up much much worse.

another thought. some insurances ( most now i think) have nursing staff you can call for chronic illness management. they want to keep people out of hospital. They will follow up on chronic health problems make sure they are seeing dr and taking meds, etc..
We had really nice person help my mom in this way through her HMO. They would pretty much find a way to get whatever help you needed or at least point you in the right direction.

 

[Valentijn]

@Misfit Toy - If I recall correctly, you're in Pennsylvania, in which case http://www.dhs.state.pa.us/foradults/servicesfordisabled/index.htm has some good information and links. There's also a phone number and email on that page, which might be the fastest and easiest way to find the appropriate help.

 

[Misfit Toy]

@beaker and everyone. Thank you. She's not in her own apartment, she's staying with someone. They are possibly wanting her out and it's not a good situation and she has nowhere to go. Plus she's not on Medicaid or Medicare.

Problem is, I'm so sick myself that this is hard stuff.

Going to try and help and share your ideas with her.

 

[barbc56]

Many states you can dial 211. It takes you to United Way.

https://www.gtcuw.org/get_help/

Good luck.

 

[Misfit Toy]

Barb, thank you! Kati had let me know and I forwarded the link to my friend. Unfortunately, I'm not operating on all cylinders due to Clostridium B, but hope to feel better and have all 4 cylinders as opposed to 1.

 

[Misfit Toy]

Wanted everyone to know she is following this post so thank you for your responses.

 

[*GG*]

In fact, if all else fails, she can go to ER and get checked in. Then they have to give her social services. If she can't take care of herself and she has no one to do so, they can't send her home and will have to find her help. At least that's how it works around here. She may get temporary visiting nurses and aides through that ( depends on her insurance how long they will come in and how much and what they will do . they usually have social workers too ) If nursing home option : She may have to surrender pretty much any savings and get medicaid and sign it over to nursing home if that is option chosen. There are some places that are for younger patients. OR assisted living centers type deal.

I personally would try to stay in own apartment. There won't be much by way of understanding of her illness and as sick as she may be, she could end up much much worse.

another thought. some insurances ( most now i think) have nursing staff you can call for chronic illness management. they want to keep people out of hospital. They will follow up on chronic health problems make sure they are seeing dr and taking meds, etc..

We had really nice person help my mom in this way through her HMO. They would pretty much find a way to get whatever help you needed or at least point you in the right direction.

Not sure I would want to sign away my life's assetts for a potentially short term issue. Also, unless you have high BP which needs addressing, not sure how helpful a nurse would be to follow up on our illness. They don't even teach about it in medical schools! So seems like a very long shot, unfortunately.

GG

 

[catly]

If she has limited assets and income, Medicaid would provide the best options as mentioned above, everything from services in the home, to some assisted living facilities( although those that take Medicaid are rare) to care in a nursing home.

The application process for Medicaid. though is pretty onerous- and requires assimilation of a lot of documents. The references for resources for the state of PA looks like a good place to start to get some help.

If she's technically homeless (sleeping on a friend's couch would count, unable to pay rent and facing eviction would count), there are programs and services that could help with that and maybe even help with a Medicaid application and something like section 8 housing or finding an assisted living facility or nursing home.

 

[catly]

Found this for PA. http://www.dhs.state.pa.us/fordisabilityservices/homelessassistance/index.htm

 

[Misfit Toy]

@catly-thank you so much.

 

[catly]

@catly-thank you so much.

Hope it helps.