Help with daily care may be available through Medicare

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old dog

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I recently listened to two seminars sponsored in part by the Steve Gleason Foundation. The subject was Medicare-paid custodial care. The basics to qualify are: 1) a patient must be home bound. 2) must require professional medical care such as skilled nursing, speech therapy, or physical therapy, as well as daily care--help with bathing, dressing, cooking, cleaning, etc. 3) have a plan of care from a doctor.

I have not seen anything in this forum about this option. If I've missed it, I apologize.

It's very difficult to get this kind of paid care. The home care agency providing the services (both professional and custodial) must be Medicare certified and willing to bill Medicare. Such agencies are rare, at least in my area. The lawsuit that determined Medicare is obligated to pay for in-home care is referred to as Jimmo. The program provides a maximum of 28 hrs. a week of care.
 
Which Medicare "parts" does this require?
 
Jimmo vs Sebelius. https://www.cms.gov/medicare/medicare-fee-for-service-payment/SNFPPS/downloads/jimmo-factsheet.pdf

It would be who pays for vna and pt etc. part b and supplemental. It is the need for skilled nursing that you will get a lot of resistance on for long terms because skills can be taught to the family. Something changed or was changing with the VNA reimbursement that makes maintenancd therapy less financially rewarding to the agencies

That said, it is important to know and to try for. Also, hopefully the snf rehabs are aware now. Early on I encountered a situation where a PALS was told no PT because she couldn’t improve. Her husband argued and I got the case citation for the social worker. She got her PT
 
It's supposed to work with either original Medicare, Parts A & B, or Advantage Plans, Part C. If interested, your ALS Chapter may have information, or contact the Steve Gleason Foundation. After running into dead ends making inquiries, I finally found an ALS rep who has helped two people get on this program.
 
This is interesting because I have tried this route and ran into dead ends. I even had some literature to back it up, but have been told over and over that what you are saying is not the case. Not sure how to fight this, at least in this area.
 
What Medicare pays for -- if and only if a local agency is willing to provide and file on it -- is up to 28 (theoretically 35 in some unclear circumstances) hours a week of < 8 a day, of skilled and non-skilled services in total. The language used is "part-time" and "intermittent." Recertification could be denied based on its having gone on too long without a clear threshold for stopping, as it's not the same benefit as hospice.

Since audits are more likely with long-term home health, owing to the dollars entailed, agencies are understandably skittish -- they do enough paperwork as is, and then there is staffing...and recertification of eligibility every 60 days, a requirement for the doc as well, which is an onerous requirement and designed to discourage long-term use.

Medicare does not pay for any visit that is "solely" for custodial care; non-skilled health services must be delivered in the same visit. Remember, "custodial care" is laundry and such; "non-skilled" services are more likely needed by PALS. There is also a physician visit requirement (60 days before - 30 days after) for this benefit that Skype may or may not fulfill.

Jimmo is actually not related to this benefit directly. That is the case that established that to be eligible for skilled services, there need not be "improvement," but slower deterioration.

So if everyone plays ball, some unskilled help is definitely possible, but it's not a given. There is no Medicare requirement that agencies participate. They can refuse on any pretext, just as with any other benefit or combination of benefits.
 
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Thanks for the clarification, Laurie.
 
I found its really all pretty easy with Hospice on board. My husband now gets showers, lunch visits, message, a weekly nurse visit, in home Dr visits as a home hospice patient. The ALS diagnosis with evidence of progression made him hospice eligible. At this time, we are getting many hours per week of help and I am paying for some other hours. To clarify:

My husband has Medicare with all "parts" and a supplemental.

Medicare, or at least our Medicare will not pay for Rilutek once Hospice is started. Other restrictions may apply to your situation.

Sometimes I have to remind Hospice that my husband is NOT actively dying and the only reason he qualifies at all is the ALS diagnosis. So, advice like "there is no need to take vitamins now" is not welcome since he wants to make it to January and the vitimins may boost his system against colds, etc.

For other help, the volunteers from the ALS Society have been awesome. I private pay around 1K a month at the moment to supplement for other needs, up to and including cleaning, laundry, and cat boxes to help ME stay sane.

Hospice is not for everyone, but we love it and its gotten us at least 20 hours a week of help for NO money beyond insurance costs.
 
Lenore - thank you for spelling it out for those who do qualify for Hospice

Those on vents, please note that at least in PA, you will not qualify for Hospice if you are ventilated invasively. They only time they would agree to come on board is if you are calling them for a death wean.

Makes no sense in a way, but it is what it is.
 
Same deal in Florida. We don’t qualify for hospice because hubby is on a vent
 
Same in MA if you're on a vent.
 
Team Gleason-CMA Town Hall TOMORROW, Wednesday, July 11 at 3 PM EDT



Breaking News - Medicare is Listening to People With ALS about Home Health Care



In proposed rules to be published in the Federal Register on Thursday, July 12, CMS provides a clinical example of an ALS patient and describes how an agency would be paid for providing an appropriate level of home health care. At our virtual Town Hall meeting, we will preview those proposed rules, including the ALS clinical example, and seek audience assistance to respond to CMS during the public comment period. Help us make sure Medicare understands your concerns about necessary access to home health care.



Register for this discussion at: https://attendee.gotowebinar.com/register/3679307145661640706

Just received this notice
 
I wish I had seen the go to meeting earlier.

I am shocked at how very little help a non veteran in particular on a vent can get. I was just reading about how in Japan people routinely go on vents and 24/7 Home Care is paid.
 
Lenore,

For most of us, it all boils down to money. I'm glad veterans get rich benefits. They should. Lord knows what kind of vaccines and toxins they were exposed to in protecting us.

But most of us have to weigh our quality of life and even quantity of life against our financial resources. Especially those of us who don't have a family that can help with caregiving.
 
Adding the handouts from yesterday's webinar.
 

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  • Gleason-CMA Town Hall ALS Clinical Example 7-11-2018 - Slides.pdf
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  • HH Proposed Rules Selection.pdf
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  • Home Care Agencies Often Wrongly Deny Medicare Help To The Chronically I....pdf
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