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chronicallycouchbound · 8 months

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I feel like people often don’t talk about the experiences of disabled people who have caretakers because so much of the conversation is about us—not including us.

I receive in home care for 30 hours a week (+ 4 hours/week for respite). This is paid for by Medicaid (state insurance). Outside of paid hours, my primary caretakers care for me unpaid and assist me most of the time. I’m very rarely left alone due to my high support needs. Often, when I am left alone, I am completely bedridden or at minimum housebound. I have frequent emergency life threatening health problems, falls, and serious injuries even with support in place, and these things significantly increase when I’m on my own.

I’m extremely lucky that my paid caretakers are my partner, my sister (the only family member I have regular contact with, I’m estranged from the rest of my immediate family and most of my extended family) and my best friend.

I used to have agency staffing which was horrible for me and borderline traumatic. At several points, before doing the self directed care option (which allows me to choose my own staff, hire and train them myself and dictate hours for them), I opted to not have any staffing. I was regularly in the emergency room. I can’t drive, so I was having to walk and if I was lucky enough to be able to take the bus on occasion or get a ride from a Facebook acquaintance, they were few and far in between. I don’t have family support, and even my sister who is supportive wasn’t living in the state at the time and doesn’t have a car most of the time.

And before I could even choose which staffing option, even though medically it had been deemed essential for me to have in home care, even though my insurance covered it, I had to wait several years (I was 18 when I was approved) until I was 21 to qualify to start. The reason why: I was legally an “adult disabled child” because of my high support needs (which is funny because I STILL don’t have SSI at age 24) and thus legally unable to consent to my own care plan. I needed a blood relative to consent, and that same blood relative (who had to have proof of such!) couldn’t care for me. At the time, my sister was the only person who could’ve been my caregiver and also she is the only verifiable blood relative I have contact with for safety reasons, and my only relative on this side of the USA.

The first business day after my 21st birthday I immediately got things set up to get in home care.

This is out of date, I get assistance with more than just these highlighted ADL (activities of daily living) tasks now.

In short: my day-to-day life is entirely dependent on others.

And there’s power imbalances that exist between me and my caregivers, even with my current caregivers being amazing and anti-ableist. They will always exist. We talk about the power dynamics of me being dependent on them for my survival, and how heavy that weight can be for each of us.

Having caregivers often means that accessibility is extra difficult— I’ve been told straight up multiple times that I can’t have assistance from my caregivers to help me change in a changing room when we’re out shopping. That they can’t go into the bathroom with me, that they can’t help me get un/dressed during appointments, that they can’t come into spaces with me.

I’ve been denied access to psychiatric care because I can’t do my daily living tasks (ADLs- the highlighted items) independently. And when I’m in a hospital or emergency room, I can’t have my in home workers be paid to care for me, there’s an expectation that the nursing staff at the hospital will do it. Even though my caregivers were specifically trained to learn my body and needs for weeks and have been working with me for years. I have severe cPTSD and showering in front of a stranger is something I cannot do. I would rather fall or faint or get injured or just not shower than deal with that. But I’m expected to just let anyone have access to my body just because I’m physically disabled and need support.

When I faint/fall/get injured/have life threatening health issues arise while I’m not clothed, or when I’m otherwise vulnerable, I’m supposed to let strangers just touch me however they want to. I have to show them my chest (for my cardiac care) and let them poke and examine me. I can’t object without losing access to vital care.

I have agency. I have rights. I have autonomy. I deserve to be able to exercise these things.

#chronically couchbound #disability #disabled #disabled pride #cripple punk #cripplepunk #disability pride #high support needs #ableism #professional caregiver #activities of daily living #ADL #medicaid #healthcare #in home care #home care #home care aids #nothing about us without us

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saydesole · 7 days

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Candles

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hersoul-exclusif · 1 year

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moonhedgegarden · 5 months

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Making a “repellent” to place in areas I don’t want cats jumping into lol

#pagan #holistic practitioner #nature #plants #earth #self care #home care #hearth witch #hedge witch #photos

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rightcare · 6 months

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خدمات الرعاية المنزلية في قطر - Home care services in Qatar

تتخصص مؤسستنا في تقديم خدمات التمريض المنزلي في قطر لكبار السن والأطفال حديثي الولادة من خلال ممرضينا المهرة وذوي الخبرة لضمان خدمات طبية عالية الجودة

هل أنت والد عامل متوتر بشأن مسؤوليات طفلك؟ لا داعي للشكر؛ قم بتوفير أفضل رعاية لطفلك من خلال خدماتنا الممتازة لرعاية الأطفال في قطر. نحن أفضل وكالة لرعاية الأطفال في قطر تضمن الانضباط الإيجابي والسلامة وبيئة الرعاية لأطفالك.

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eternitysoup · 1 month

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Today is another overcast day, but surprisingly it's going to be in the 80s. I really wish it were cooler or at least a little rainy outside. You know, the kind of weather that makes you want to open your windows wide and enjoy the fresh air. I just finished scrubbing my fireplace thoroughly. It took both more and less time than I initially expected, which is kind of funny. I also made sure to deep clean the litterboxes downstairs, but I still have to take care of the one upstairs.

My boyfriend has been incredibly helpful this morning. He made us delicious fruit and yogurt smoothies to kick-start our energy for the day. After that, he took the time to sanitize the trash can we use for the litter. Right now, he's making himself a cup of coffee and letting it brew while he takes our dog for a walk. I'm a little jealous because I can't have any coffee yet. I've set a goal to reach my desired weight before indulging in caffeine again.

I had to spray some Resolve on the staircase landing once more. I can still see a slight stain, but it's hardly noticeable. I've decided to treat it one more time today and then I'll consider it done. I am sitting down now for a quick break, and we are watching a Skyrim playthrough. I need to get back up soon before I get too comfortable and "accidentally" get lost for time. I still need to vacuum downstairs. I know myself too well!

In any case, there's not much excitement happening today. I apologize if this cleaning-focused blog entry is a bit dull for you, reader. Sometimes I question why I write down all these details, but I do enjoy it. I find pleasure in reading the comments I receive and exploring the blogs of those who follow mine. It's a soothing slice of life, a way to connect with others. I hope wherever you are on the map, your day is relaxing and peaceful.

#journal #my blog #blog #life #my journal #my stuff #my post #spring cleaning #house cleaning #cleaning #home care

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caringhaven · 7 months

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American Association of People with Disabilities (AAPD) is excited to invite job and internship seekers to a virtual Career & Internship Fair!

Join them to hear from companies, agencies and organizations committed to embracing inclusive practices within their workplace culture.

Job and internship seekers looking for early career development opportunities are invited to participate!

Tuesday, October 17, 2023 from 2:00-4:30pm ET

Attendees will learn:

• Mission and purpose of participating companies

• Job and internship opportunities

• Inclusive practices and ideology of participating companies

• Potential future company-sponsored professional development courses, workshops, or training

• Company representatives contact information for post-event follow-up

Attendees will also have the opportunity to interact with company presenters in smaller breakout rooms. Don’t miss out on an opportunity to make connections that could have a lasting impact on your career!

Registration link in comments.

Are you part of a company or organization that wants to reach job and internship seekers?

Let AAPD know by submitting an interest form, in comments.

#CareerFair #DisabilityAwareness

#disability #respite care #caregivers #elderly #home care

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teabazile · 7 months

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On behalf of Ceiling fans.

Is your room to hot? to cold? Change the direction of your ceiling fan. On the base of the ceiling fan there is a little switch, this changes the direction of the blades. Note: Please make sure to turn off the ceiling fan before attempting to flip the switch. For more information and explanation: https://www.youtube.com/watch?v=7gWIj4DivVA

#home #home care #cool #heating #saving energy #now im tagging random things so this goes further yall need to know #tea speak #aziraphale x crowley #crowley #crafts #art #aniexty #ts logan #ts roman

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batsarebetterthanpeople · 2 years

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Love being autistic and working in a home care setting. I don't feel safe around my coworkers. They need to be reminded to see our clients as human beings. And I don't feel safe around my superiors, they will put videos by ABA therapists in the fucking training, even when most of that training is technically good and the particular thing that therapist is saying in the video isn't objectionable I still have to be told that someone who tortures children just for being like me is an "expert". And then I'll try to say something and I don't have a degree so I don't know anything as if someone who studied for four years could understand the life I've been living for 21.

Worst part is I know if I say "I'm autistic" they'll use it as an excuse to write off what I'm saying even though it should be the reason they're listening to me and taking my advice. I have experiences that you could never and will never have because of that. You should be listening to the clients but I know you're not gonna do that so the next best thing is listening to me when I tell you that something you're doing is wrong.

I have to sit there and listen to them talk about mental age and use terms like high functioning and low functioning and talk about when it's acceptable to undercut someone else's autonomy and I literally can't respond to all of it and I don't want to lose my fucking job so I have to just keep my mouth shut most of the time.

#actually autistic #home care

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cannibalgh0st · 2 years

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I cleaned one side of the house yesterday- now today I can do the rest! I'm opening all the windows to get fresh air circulated- cleaning the counters, wood, and floor.

I'm even doing laundry in small batches. Honestly just staying clean helps me so much. This week has been a lot for me emotionally and mentally.

I might even do a smoke cleanse after everything is sorted out🌿

Sending everyone positive vibes on here! I know I haven't been replying to messages- I'm running on fumes and trying my best rn.

#clean your living space #cleaning #disinfectant #house stuff #home care #clean #laundry #refresh #cleansing #spiritual healing #spiritual cleansing #Aquarius #smoke cleansing #2022 #September

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tehjmastuh · 1 year

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Hey everyone! So a little while back, I made a GoFundMe due to the amount of surgery I just had. I would really appreciate it if you would consider donating, and sharing. Anything that would help means a lot to me. Thanks so much!

#Go Fund Me #Road To Recovery #Hip Injury #Surgery #health #hospitals #doctors #nurses #health care #home care #all health matters #health matters #fyp

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covenscribe · 1 year

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youtube

I love this video because it really breaks down why the cheapest powder dishwasher soap is actually great to use.

To summarize, fill powder to dishwasher fill line And fill the pre-wash cycle fill line and you will get a better wash than those expensive Pods.

Rinse aid is still recommended which the pods absolutely require

yes tumblr userbase is aging and thus Im aging lol

#home care #household chores #dishwashing #Youtube

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arnapurna91 · 2 years

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Finding Home health agencies near me| home care nurse| Bhubaneswar|

Home health care agencies provide home care nurses, providing primary health check-ups at home with the consultation of doctors. In Bhubaneswar, one of the best health care agencies is Tech Tricks Health care, which provides home care nurses, and doctor consultations in critical times and, home care services for bedridden patients who can’t help to do their daily work.

So don’t search for home health agencies near me, contact Tech Tricks Health care for the best and most professionally skilled home care nurses near your locality, for more information about home care services, then visit the website.

#home care #Healthcare #home health assistant #home nurses #home health care #health care near me #Nursing care near me

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eternitysoup · 2 months

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I had an incredible start to the day today. Instead of waking up at my usual time of 8 am, I allowed myself to sleep in until 9 am, granting me some much-needed extra rest. This additional sleep worked wonders for me because I felt refreshed and energized.

Before noon, I managed to accomplish a lot. First and foremost, I dedicated some time to my workout routine, ensuring that I took care of my physical health. Following that, I took the opportunity to clean up both my bedroom and bathroom, giving my living space a fresh and tidy appearance. The act of decluttering and organizing brought a sense of calm and clarity to my surroundings.

After completing my cleaning tasks, I treated myself to a relaxing shower. This time, I went the extra mile and took the time to shave my body, paying attention to the smallest details of self-grooming. The result was a renewed sense of confidence and self-care.

(We still have to call the landlord about fixing that shower faucet. Now, it is also leaking water!)

Feeling fully prepared for the day, I put on freshly cleaned clothes, which added to my overall feeling of freshness and renewal. Taking cleanliness a step further, I meticulously cleaned out my washing machine, ensuring that it was in pristine condition for the laundry I planned to do later tonight, particularly the bedding.

In addition to taking care of my immediate surroundings, I also took care of my household's future needs. I placed an order for an ample amount of cleaning supplies and food to last us throughout the remainder of the month. This proactive step not only ensures that I have essential items on hand but also relieves any potential stress of running out of necessities.

As the clock struck 4 pm, I couldn't help but feel a sense of exhaustion. However, this tiredness was accompanied by an overwhelming sense of accomplishment. Looking back at the day so far, I can proudly say that I made the most of my time and utilized it in a productive and meaningful way.

(Maybe I will sneak onto the playstation now, lol.)

#journal #my blog #blog #life #my journal #my stuff #my post #hygiene #showering #cleaning #home care #groceries

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bw-patrik11 · 2 years

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#Doctor #home doctor #emergency #home care

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aricaimarie · 2 years

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Home Raised adorable male and female Rottweilers puppies for sale ❤️

#rottweiler #home delivery #adorable #lovely #puppy #worldwide #female #home care #male #my puppy

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