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cALS Roundtable Discussion: What do YOU Want to Know?
You are invited to sit down (virtually, that is!) and join in our ALS Roundtable discussion.
This week we are gathering suggestions from YOU and other forum members on what areas of ALS-related information you are searching for.
For example, what kind of caregiver-related information are you looking for or can’t find answers to? Or are there topics that spark an opinion? To start us off, below are four suggested categories.
Please vote in the comment section below, by choosing A, B, C, D or E – – or a combination of letters – – or even suggest a topic of your own.
Let’s find out what You want to know! Thank you!
- General news about ALS research and proposed treatments.
- Updates on clinical trials: those that are open for patients to join as well as clinical trial outcomes.
- Information on health insurance, long-term care, home care or agencies providing assistance to ALS patients and families.
- Tips and suggestions for caregivers to help their pALS adapt and live with ALS (including: home, travel, meals, adaptive equipment and maintaining physical health).
All of the above.
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2 Replies
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I know that Medicare changed it’s rules this year and they will now approve up to 28-15 hours per week of home health aides – Caregivers. When my mother needed more and more care, our ALS clinic took all the necessary steps, wrote letters, etc., but NO agency would even discuss it. One of the many requirements for Medicare approval is to have medically necessary skilled home care — could be an RN visit every few months– just to certify care is necessary. Even the RN sent out by the clinic told us Medicare would never pay. It’s too late for us now but it would be great if someone with a big voice and bigger audience could publicize and/or educate Doctors/Nurses/Clinics/Medicare Approved Home Health Agencies, etc.
Rick Jobus has written several excellent columns on the subject. The latest I could find is: https://alsnewstoday.com/2019/05/22/surviving-medicare-home-health-agency/
As far as I could tell from reading the Medicare site, the reason things have changed is that there no longer needs to be any expectation of recovery or improvement. There are many hoops through which we must jump and many requirements to be eligible but an ALS diagnosis should, in my opinion, be automatic.
My mother refused more hours of caregivers because, as an RN herself who did home care during the last several years of her career, she KNEW that Medicare doesn’t cover home health aides. She wouldn’t believe us, even when I showed her Rick’s column, and the Medicare changes. It was heartbreaking because even though she lived with family, there were still times she was all alone and terrified…but afraid she’d run out of money too quickly.
PALS and cALS should NEVER be put in this position! The only positive thing I’ve seen publicly is the many, many tv ads offering Medicare supplements that will now (again, too late for my mom) pay for home health aides, meals on wheels, etc.
Being a CALS or even just a family member (such as me who lives far away) is obviously not as bad as being a PALS but it’s a close second. My anger with the lack of progess in finding not just a cure but even any worthwhile treatment grows and grows.
My best wishes to you and all the PALS and cALS on this forum. My heart hurts for all of you and my admiration is boundless.
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