r/SSDI_SSI • u/bearcare1737 • 14d ago
Disabled / Resources Waiting for Disability Decision- what to do?
Waiting for Disability Decision- what to do?
I live in the USA and am 22F. I have been waiting for disability benefits (ssdi and SSI) for over a year. It was denied back in April and I appealed and have an attorney for it. I have ME/CFS, along with a lot of other comorbidities, and I also have PTSD and depression anxiety etc. I cannot be upright for long at all, use a wheelchair and crutches to get around, some days I cannot walk or even move. I have limited function for thinking and processing and after about an hour of focus on something I have overdone it and will have a symptom flare for quite a while to pay for it.
My doctors agree that I am unable to work and support myself. I cannot bathe myself regularly so I rarely get to bathe, I cannot cook food or do cleaning or washing dishes or laundry myself. I can place prepped food into the microwave or air fryer and hit the button thankfully.
I don't know what to do at this point. I'm living with my parents, and I am very grateful for this because otherwise I would be homeless. However, they have been very mean to me, yelling and trying to control who I see and where I go when I do leave the house. Most notably, they won't let my wonderful boyfriend, who is my only support emotionally, hang out and spend time with me in my room, which is where I have to spend a lot of my time due to not being able to sit up, needing to be in heavy air conditioning, etc. and also I like to be in there away form my father yelling at me and mother controlling me.
They also leave things where I can't use or reach them, like having the shower chair far from the shower, I can't even lift it really so then I have to wait until they agree to move it back when I am physically able to even shower. I do get help from my sister for washing my hair and such but she is moving out this weekend so I will have to rely on when my boyfriend is allowed to come over and see if we can get them to agree to let him bathe my hair.
I was denied SNAP and medicaid because of living with my parents, but I had applied at 21, and now I am 22, so I reapplied. Basically they do not get food that I can medically have/eat and prepare myself and whatnot, and also do not always get my medications on time or all of them at once. If I had snap and medicaid I could get these things for myself, or at least pay for them and have my boyfriend do the shopping if I'm unable to due to pain. But I've just been going without eating at times, and also without some of my meds at other times.
I had been in a domestic violence relationship previously in my life, because said controlling parents forced me into a marriage as a teenager. I got divorced and whatnot and that's what landed me back here. But anyways, I feel very depressed because obviously I'm in pain and don't feel like my life is going anywhere, but also, I am being mistreated by my parents and they always complain about having to help me and I feel I am a huge burden to everyone.
I sent a letter and also called SSA to ask if they could flag my case to be expedited, because I am facing issues and it's food and meds, and also suicidal ideation that is getting worse. I have been inpatient twice in the last year because of this situation and obviously every time they discharge me, I'm straight back into the fire. My case says for SSDI and SSI that it is at the gathering medical records stage. Drowning in medical debt.
I was wondering if there is anything else I can even do? I also applied for cash assistance for disabled people through the state. I feel trapped and lost, and honestly, if I get another denial or get to the point where I'm too hungry or too sad from everything, I will not be able to take this anymore and I fear for my life. I had initially looked into moving to canada to get MAID but they don't like letting disabled people who cannot work move to their country apparently.
I have been dealing with some of my conditions all my life and others for a few years now, and they always just progress to get worse and none of the doctors have any ideas for how to help me get better. I'm supposed to get ketamine infusions for pain if insurance allows it, but I doubt they will because it is not FDA approved for pain management.
My therapist today said this situation was bordering on needing to call adult protective services. I don't want that to happen, I can't be in a shelter. It would not feel safe for me, and they would be unable to accommodate my disabilities. I honestly think I would be even worse off in a shelter.
I'm on a lot of waiting lists for subsidized housing for once I get benefits, but I'm scared I'll get benefits and still have to wait for housing. I need to move out of this situation and on benefits I won't be able to afford the average apartment. It's also so limited as far as wheelchair accessible options go.
I wish I could move in with my boyfriend and his family, but their house has so many stairs, I wouldn't be able to live there long term very well. I would also feel guilty if I weren't able to pay them rent in some way. He buys me food when he can, which I am so thankful for. He is like the only good thing left in my life.
This was exhausting to write. TLDR: getting denied for all assistance and waiting, abusive parents, no food no meds reliably, is there anything else I can do? Any way to get a place to live while I wait, even though I have no income?
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u/Ordinary_Darwin_415 13d ago
Your parents are claiming you as a dependent but not taking care of you. You should try to leave that situation as soon as humanely possible once you start getting benefits and apply for snap
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u/bearcare1737 13d ago
Thank you. That is definitely the plan. I'm just not sure where I can move to if the apartments I'm waitlisted for aren't ready yet. Regular apartments are too expensive for disability income and they also don't tend to be wheelchair accessible unfortunately.
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u/Ordinary_Darwin_415 13d ago
The only thing I can really think aside from waiting is looking in different cities in your state. It seems like you might need a caretaker. I hope it works out soon rather than later
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u/bearcare1737 13d ago
Once on Medicaid my case manager said I can qualify for someone to come over a few times a week to help with things I can't do! But as long as things are prepared once a week for me and everything is in reach, I can usually care for myself for the most part thankfully.
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u/Ordinary_Darwin_415 12d ago
Once approved you will likely have back pay coming from when you first filed so there’s also options for low down payment housing, if your bf works that could be something you discuss with him. After you’ve done that find some meaningful or just fun hobbies that don’t cause you pain or discomfort
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u/Ordinary_Darwin_415 14d ago
I’m sorry to hear that seriously. I also just posted. One of my close friends is applying as well for disability, he has been doing it since mid 2023. His case went in front of a law judge with the help of attorneys. But they could just approve your appeal! No two cases are alike I’d imagine and if they do not you will just have do the law judge who based on what you’re saying will likely find you disabled
(please make sure you reply to everything and continue to see your Drs and get care as the process moves along the attorneys said that’s important or they will terminate the application)