micaela-macdougall
Forum Replies Created
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In an ideal world, I’d love a Jaco. But my insurance won’t cover it.
It’s as simple as that. The problem is not the existing tech, but the systems for accessing it.
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Happy Pride to you too!
I was going to join my church’s contingent at our little local parade, but we got rained out. ☹ I think they’ll reschedule for the fall.
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Is this particular to your state? I’m in Maryland, and I had no problems getting Evrysdi covered by Medicaid.
You’ve probably also looked at this: https://www.evrysdi.com/financial-support/assistance-options.html
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If you can get a small group together, I’d be up for that!
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Thanks, everyone, for so many good suggestions! I’m sure I can figure out a good strategy from this list.
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I am also a huge fan of Christmas! The first Christmas of the pandemic, my mom and I had a two day extravaganza of baking cookies and watching movies. We loved the Grinch and Charlie Brown, but the Rankin & Bass specials are weird! I swear whoever wrote Rudolph was high. And the trauma of the Little Drummer Boy… Hey kids, want to hear a story about a boy whose parents are killed in front of him the same night his house burns down? Then he gets enslaved by marauders who sell his camel, and his lamb gets hit by a chariot. Merry Christmas! Yeah, I really had to cheer myself up with Elf after that.
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Thanks, Mike, that’s really helpful! What’s weird to me is that my wheelchair did have an elevator and a standing function, which were both approved from the start. I’m not complaining, it just seems random that I could get those, but not any kind of robotic arm.
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I’m not sure anyone here can account for the nonsensical logic of insurance companies. Mine, for example, covered a $30k wheelchair, but not a $12k Obi (<font face=”inherit”>https://meetobi.com/?srsltid=AfmBOopvvO541_prDxcUobbp1LOzzOrr8pAc9LS0WvwVnICCqH6JZgJp</font>). I can speculate that the Obi was not considered a basic need, or that it is too new/not mainstream, or that insurance only covers tech that can’t be replaced by a caregiver, but really I have no idea.
meetobi.com
Meet Obi: the Adaptive Eating Device - Eat Independently!
Obi is a revolutionary adaptive eating device for individuals with upper extremity strength and mobility limitations. Independent eating is possible!
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Thanks for the reply! Yeah, the communication is tricky. Even when I’m sitting up and awake, I have a hard time pinpointing why it feels wrong and finding the words to explain that to someone else.
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So glad I’m not the only one! Thanks for the advice, I’ll look into that.
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I saw this one when I was doing research online, maybe I’ll give it a try. Thanks!
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Have you looked into Maryland at all? Higher cost of living, but one of the few warm blue states. My Medicaid hardly ever denies anything, and I have great doctors at Hopkins. On the flip side, they don’t cover round the clock caregivers, and it takes months (even years) to get hours approved.
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Preach!
Thanks for reminding me about the independent living centers, that’s exactly what I’m looking for!
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Those sound like good strategies. I think that’s the sort of thing I want to say, I’m just not sure who to say it to. Two different social workers have told me that there are no programs that cover overnight care. So I haven’t even gotten a denial that I could appeal, I’ve just been told there is nothing I can apply for. I’m not quite sure what to do with that, do I keep working my way up the chain of command, do I go through my representatives, or something else entirely?
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I’m happy living with my parents, I just want reassurance that once they get to your mom’s age, I will have a replacement and be able to stay in our house.
I know 13.5 hours/day wouldn’t be anywhere near enough for me. I need a good 10 hours of sleep a night, help eating all my meals, and it takes so long to do basic hygiene. I currently get a few hours, and I’m in the process of requesting 11 hours/day – this is based solely on my daytime needs, since I’m not allowed to take overnight needs into account. I’m happy with my mom covering most of those hours for now, but I want to transition over time to paid caregivers.
What specific steps did you take to get extra hours from the county? I know I need to advocate for myself, but I’m not sure where to start.
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Exactly, I had an easy time during college because I lived at home with my parents.
Now I’m trying to figure out a plan for when my parents age out of doing my overnight care, and Medicaid provides zero support. So in order to stay in my own home, I have to find someone who is willing to handle my care with little or no pay. Really?!
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Same here! I haven’t started it because I didn’t know when the book club would be. I’m in the middle of a few other books right now, so I’m not sure when I’ll get to it.
I love the idea of a book club, but I would personally find it really helpful to have a set date, so I can give myself a deadline for reading the book. I think it would also help get a little more of a back and forth conversation going if we’re all reading at roughly the same time.
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Hi Mark! Yes, Matter is a new system that connects devices to most major smart home systems, including Alexa and Smartthings. I think you would install the blinds on the Eve app, then upgrade to Matter, and from there you can add them to your existing system. That said, the instructions say that you need a Thread Border Router capable Home Hub (like a HomePod (2nd gen.), HomePod mini or Apple TV 4K) and an iPhone or iPad in order to upgrade to Matter. I would recommend contacting support to make sure it will work for your setup – I found them to be very responsive and helpful.
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Sorry, I can’t find the model I got.
I use a smart plug so I can turn it on and off with my phone – really easy to set up!
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I got a towel warmer when I remodeled my bathroom last year. The one I have doesn’t make my towels noticeably hot (they don’t feel like they’re out of the dryer) – but it does stop them from feeling cold, which they used to. I really like it!
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I don’t really know Santa Claus Is Coming to Town, but I do like laughing at A Year Without a Santa Claus. Especially since my uncle looks like the Heat Miser. 😆
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So many great suggestions, thanks! I don’t think my chair has a usb plug, but I’ll check.
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Good idea, thanks!
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We tried a bunch, but it’s the snickerdoodles (https://cookiesandcups.com/perfect-snickerdoodles) and sugar cookies with buttercream icing (my grandma’s recipe) that we still make every year.
cookiesandcups.com
Soft and Chewy Snickerdoodles - The Best Snickerdoodle Cookie Recipe!
This is the BEST snickerdoodle recipe ever. Soft and chewy cookies loaded with cinnamon sugar are made in just 15 minutes - it's so easy!
