How to Be a Demanding Diplomat as a Severe ME/CFS Caregiver
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- čas přidán 27. 07. 2024
- Galen Warden is the mother of an adult son with severe ME/CFS. Bateman Horne Center partnered with her to provide essential guidance on caring and advocating for individuals with ME/CFS. In this presentation, she discusses the importance of logistics for individuals with severe ME/CFS, how a medical proxy can streamline the process for communicating with medical professionals, types of government-funded disability and tips on gaining approval, tactical advice for transporting individuals with severe ME/CFS to medical appointments, her method for obtaining necessary accommodations at medical appointments, and caregiver support options along with practical management. She also shares her effective communication style when communicating with various medical providers.
Topic Time Stamps
0:00 Intro
1:50 - Importance of logistics for severe ME
5:42 - Medical Power of Attorney
9:00 - Disability
19:25 - Transportation
27:43 - Accommodations at medical appointments
39:15 Caregiver support
Access the transcript and presentation slides at batemanhornecenter.org/blog.
Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current regimen.
Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation.
Links within the presentation:
www.severemecfs.com/resources
medicare.gov/coverage/ambulance-services
galenwarden.com/post/gurney-guide
medicare.gov/coverage/homehealth-services
galenwarden.com or severemecfs.com severemecfs.com/post/gurney-guide severemecfs.com/post/you-need-a-caregiver tiktok.com/@galenwarden severemecfs
@Bateman Horne Center, please please please please do not stop these videos. Please don’t stop your work on this issue. I am so thankful for these resources.
Thank you, Galen!! Great information!! 💙💙💙
Thanks so much to Galen and the BHC for this great presentation. Lots of hard won and helpful information
For the Medicaid transportation part, just fyi, if you are capable of transferring yourself on and off the gurney or ambulating even a few feet they may try to refuse to pay for the ride. I was warned of this and opted for a really uncomfortable upright wheelchair ride across town, and resulting PEM. I had arranged the stretcher ride for leaving the hospital. They said if I was ambulatory at all I would be charged, so I opted out because they saw me use the bathroom. I was so sick at the time with my orthostatics really flaring up. BP 52/40 back then. I also got PEM from getting up to walk to the bathroom and the bright lights. I felt like passing out when I was on the toilet. But the paramedics don't understand ME like that and I couldn't risk getting a $3000 bill.
Another time, I was denied access to a whole cardiology clinic while trying to arrange my stretcher ride to arrive there. The office manager claimed I was "rude" to staff, but the truth is they denied me medical care because the logistics were annoying to them. I was pleasant and not rude at all. I do think it would have helped if somebody was advocating on my behalf. I have a reclining wheelchair now, and my health has improved just enough to not need a stretcher but my heart goes out to anyone trying to make these arrangements. It is so difficult! I hope you have better luck. People thought I was just being a massive inconvenience, and I think having good caregivers advocate on our behalf can work wonders. Thank you Galen for everything you do.
Thank you so much. I couldn’t read the links she gave on the last slide, can you add them to the description? They are blurry. She is doing a wonderful job for her son, as befits her name. I wish him the best and that this awful disease becomes treatable. There aren’t words enough to express my thanks to Galen and the Bateman Horne Center.
There are links in the video description.
medicare.gov/coverage/ambulance-services
How do you get a case manager? Which agency has those?
None of the home health aid companies in my area take Medicare. They take Medicaid, but my income is just barely too high to qualify. My poor husband is drowning, and I don't know how to help him. I am severe/very severe. No family members will help us. My PCP fired me and now I don't even have one of those. I'm in New Mexico.
It's very dependent on which state you're in. Can you tell us where you are?
@@cherien6283 New Mexico