![]() |
SSDI and living independently
I've been on SSD since '98 and I get only a little over $600 a month. I
can't even afford the monthly Medicare Part B deductible, which is why I'm still on my father's medical insurance as a "disabled dependent". Which is another way of saying that my parents don't believe that I can take care of myself. So, I've lived with my parents for 40 years because I can't afford any place else to live. What I really need is more money from SSD ($1000 a month would be nice!) I need to be able to afford Medicare Part B and a place to live in MD. I don't want to live with a roomate, because after 40 years with my parents, I just need my space. And, since my asthma is affected by my mother's smoking, her chemical cleansers, and houseplants, I could really use some fresh air. My mother's name is also on my bank accounts and credit cards, so I can't even buy anything without her knowing about it. Is there something wrong with me wanting to have a life of my own without my parents hanging over my shoulder all the time?!:mad: There has to be a way for me to get out of this house and live on my own, but I haven't found it yet. Thanks for letting me rant. |
Gina,
No, there's nothing wrong with you for wanting to live independently. I'm not sure how SSD works (since I've not been on it) yet, I'm hopeful, someone else who does understand SSD will post. This is what I don't know: Whether SSD adjusts the monthly amt. if someone could find a place to live on one's own. Maybe you've already checked out the following, I dunno, so I'll go ahead and post them: http://www.dors.state.md.us/dors http://www.mcil-md.org/services.htm http://www.nod.org/index.cfm?fuseact...Page&pageId=17 |
Would this site help at all? Perhaps you have already been thru it.
http://www.ssa.gov/disability/profes...ical-Adult.htm Kitt |
Thanks!
I think I remember the blue book from when I started with SSDI. If
I'm remembering this correctly, it was one of the reasons I was able to get Disability, because Epilepsy (which I have) was listed in it. I don't remember if hydrocephalus was listed, but that was another reason that I was able to get SSDI-because I already had a "permanent medical condition". (They were wording it differently, but I don't remember the term(s) they used). I'll look through all the links and hopefully, I'll find something that will help me. Thanks, ladies!:) |
BrainDrain....
I really feel sorry for you... I really wish I can help you.
How is the blown circuit issues (?) from the last board going, did you convince your mom and dad to look into things so your house won't blow a fuse. (I don't remember what went on with that.) I am absolutely not siding with your parents. I see your point totally. You need space and CLEAN air to BREATHE. You are INTITLED to that. You know, if your mom and dad are that desperate to keep you home, is there a possibility that something was available within walking distance of your house. Or hey! What about creating an "appartment", you'll still keep your mom and dad happy by being there, but you really aren't. Maybe if your mom and dad upgrade things like appliances you can take the old appliances and make your own space to live. I, too, am permanetly (for the time being) stuck at home, but I don't mind with my beloved dog who is such a joy. I want to spread out sooner or later, but I want to be arround for Cocoa since no one is arround that much, except me. Though, you would think your parents would applaud your desires to be on your own reguardless of anything. I've been trying for some time, but when my sister found out, she totally went bellistic on me and pretty much said I had no business moving out on my own. (Even if it wasn't that far, probably not even a BLOCK away. It gets better, my own DAD refuses to see things my way and expects me to stay here the rest of my life. I know my mom has faith in me because she supports my desires to be a singer. She knows I am under a great deal of stress being "on the system" and she knows that I deserve better. (Like I said before my dad "twisted" her arm to see things his (and his "know it all" buddies') way about MY life. Good luck, hon. |
He looked at the board, but nothing else has been said since, so I'm not sure
if he's doing anything about it. Although, he's been "b--ching" (my mother's word) about my mother's smoking in the house. I can't seem to get it through to either of them that the smoking is not the only trigger I have. Even if she quit tomorrow:rolleyes: , there are so many other things in the house that can trigger an attack that the only way for me to be able to breathe is if I moved out. Oh, get this: my brother and his wife are ones who agree that I should move out, but my mother won't listen. Round and round we go...:rolleyes: |
Gina,
When a person is awarded SSDI, the monthy amount they recieve is based on their past earnings. The more you earn while working, the more money per month you will get from SSDI. For people like me, who became disabled at a young age and barely worked enough and made only a little money at work -- well then there is a minimum payment (in the $600 per month area) that SSDI pays. So, long story short - whatever amount you get from SSDI now is the most you will get (except of course for the "Cost of Living" increase at the end of every year which is usually about 1%). So, the $600 you get per month won't be going much higher no matter what (again with the exception of the once a year tiny 1% increase). However - there are other programs out there that can help. There is Section 8 housing vouchers where the federal government pays all or part of your rent. Then there are other renters rebate programs on the state, county, and town levels depending on where you live. There are food stamps, energy assistance for the electrical bill, heat assistance, some states have reduced phone bill rates for the disabled. Many states will pay the Medicare part B premiums for you, if you are low income and need the help. In your situation because you still live with your parents and are still able to get medical insurance through them then your state will not pay because there is not a dire need... but if the health insurnace through your parents was no longer available, and depending on other circumstances for eligibility, the state could pay for the medicare premiums for you. To find out about the types of programs in your state, and to find if you are eligible, you would contact the Department of Social Services (formerly known as the welfare department) and talk to a case worker and fill out applications for the programs. If you continue to be stuck at home - is it possible to purchase one of the Hepa filtration room air purifiers? The Ionic type of air purifiers have been shown in studies to increase the amount of bad air in the home, but the Hepa type of air filtration units have always been considered to be the best. A room unit can cost about $200 and up depending on the type of unit and the size of unit you need to clean the room, and units that clean the air in the whole house are thousands of dollars.... but could you get a unit to purify just the air in your bedroom so that you would at least have one room in the house that has safe air for you? |
I have the Ionic Breeze at home, but it doesn't help much unless I stay in
my room all day. There was one in the living room, but my mother didn't like the fact that it "looked dirty" after a while (an obvious sign that the air in the living room was polluted), so she washed the air filter...with a hose!:eek::rolleyes: :mad: Needless to say, that particular air filter doesn't work anymore...:mad: And, no, she's made no effort to get a new one. I think she should pay for it, not me, because she's the one who broke the last one! Now, about the insurance: the story I get from my mother is that my brother will be adding me to his medical insurance in a few years. I don't see how he can do that, though. It would seem to me that after my father retires this year, I would have to come off of his insurance and sign up for Medicare. But, maybe there's something I'm not understanding about it. If I could just figure out a way to look into these programs without my parents knowing about it. |
Its very hard for adult children to live with thier parents no matter if disabled or not. Some states have social workers that can help you to live alone especially if you are having the problems that you do.Talk to your doctor or maybe medicare and they may refer you. Someone else on this forum may be able to help you more. The other option is a separate apartment in your parents home, in some homes it can be done easily, my house is fairly small but if I had to it would be easy to do and not to expensive. If you don't want your parents to know enlist the help of your brother or sister and let them do a lot of searching for you. Good luck to you .
|
Gina....
Fron what I understand of your last post, your brother and sister-in-law are urging you to see if you can do better than what your mom and dad want you to do? It kind of sounds that way, at least THEY have faith in you. Correct me if I am wrong.
Hey, you are over 21! You can do whatever you want. So what if driving may be a problem, there is public transportation (I'm in the same battle with my dad) and I am confident you have common sense enough to tell you to stay put if you feel the slightest bit funny. Can I ask if this has been an issue your ENTIRE life, and I bet you are going to have issues with seccond hand smoke before you have issues with your shunt. Oh yeah, there is something called "life alert", but there is one thing that coud be an issue? When your shunt goes down, does it go down without warning or do you normally get gradual signs? This may or may not make a difference as long as you get into surgery ASAP. |
I've been wanting to move out of here since I graduated high school, but
I never had the money to do it. My father and I have both brought up the issue of second hand smoke, but my mother's attitude is, "That's too bad." She didn't say it that way, but that's the attitude. Now, follow me on this: she tells me that I can't live on my own because I "can't take care of myself". She tells me that I can't live by myself because "something might happen." So, I've lived with my parents for 40 years and something is happening: I'm suffocating-literally! Oh, and all these medical conditions that make it "impossible" for me to live by myself are hereditary. The problem with public transportation is that I don't live near a bus stop-I'd have to be driven to one. I don't see any volunteers in this house. When I have a shunt failure, there are certain signs, but they can be misdiagnosed-when I had the shunt failure last year, they thought it was a stomach virus (because of the nausea and vomitting), until they did some tests. Also, back in '94, when my shunt failed, the signs were totally different. That's when my vision problems started, for example, and my seizures increased. I'm not sure if Life Alert would work for me or not. I think I'm going to mention Life Alert to the Hydro board and see what they think. Thanks!:) |
The last thing you said......
ABSOLUTELY go for it. You deseve to breathe clear air! (I bet that would help with the headaches as well. (Just a theory.) Keep us posted. We care about you!
|
I'm confused
I checked out the site for LifeAlert and found this:
Home Emergencies Help, I've Fallen and I Can't Get Up® In a home fall emergency, or in case of a seizure, heart attack, stroke or other serious illness, a senior usually cannot reach the telephone. She or he may lie on the floor for hours or days, disconnected from any help. This injury can become life threatening. How can Life Alert® help? A simple press of a button will instantly activate Life Alert's small base unit located in the house. This unit will immediately communicate with our Monitoring Center, initiating amplified two-way voice communication between the senior and our emergency operators, who will contact neighbors, Paramedics, the Fire Department, Police and/or relatives as needed. ************************************************** ******* It mentions being helpful for people with epilepsy, but it only mentions "seniors". There's no mention about people under the age of 65 with disabilities or other medical conditions. So, this product is only being recommended for senior citizens?:confused: |
True, life alerts are mostly used by senior citizens, but I woldn't think you would be discrimiated against just because you are not a senior cetizen yet. Personal freedom that comes along with a device like that doesn't discriminate.
Hope you consider this as an option. :) |
I'm thinking about it, but I want to get as much information as possible
before making a decision, y'know? I'm pretty sure I'll get one, I'm just not sure when it will be.:) |
Quote:
|
Quote:
Thanks!:) |
Quote:
|
no choice
I'm sure that it was his choice. After all, "you're disabled, you can't take
care of yourself!":rolleyes: :mad: And, SSDI doesn't help by giving us an amount that we can barely live off of, without helping us find a place of our own. Shouldn't they (SSDI) be showing us which programs we are eligible for, in order to pay for Medicare and housing? Instead, they basically tell us, "here's the money you'll get for the rest of your life, now you're on your own.":mad: |
Quote:
My sister is a whole other story that I don't EVEN want to get into. I bet you are the only one who does the houswork, too, aren't you. My sisters (yes, I said sisters, the one who is opioniated and a mess worse than I am supposedly in) and one who just HAD to move back home because she was transferred. (I can't wait until JANUARY! I wish I was moving, but I am not.) |
Actually, I haven't been able to do the housework for months, because my
legs just won't hold me up. The washer/dryer is in the basement and I can't get down the steps. I can't even stand up long enough to wash the dishes. (Yes, we have a dishwashing machine, but it still has to be loaded/unloaded). Now, my mother's counting on this procedure that I'm supposed to have soon (burning the nerve endings in my lower back) to take the pain away. (Translation: I'll be doing all the housework for them in no time:rolleyes: ) What she fails to understand is that my walking/balance is only one of the problems I'm having. It would help if I could breathe without having to use the nebulizer machine 3 times a day!:rolleyes: Did I mention that I don't use the machine as much when I'm by myself? Coincidence...??:rolleyes: |
Quote:
I would almost suggest this, but I don't want to hurt your feelings and or ego, but if I do, tell me. Have you ever tried thoose appartments (i think) that are considered "assisted living", no, not a "retirement vilage" or whatever, but think of how much freedom you could get from that, and I would be since it's "assited living" there are ways you could get out of your town or even on short trips. I think my issues are only based on my dad's know-it-all friends, and like I said, what my dad hears from his friends, concerning me, goes. :( . The only reason why I don't drive is basically from a very traumatic learning expireince in driver's ed. (Don't ask.) That means, I am free "to do the housework" like my sisters and my dad expects. (I mean everything) My mom and I are basically the only ones who do it. (I wish they could live in my shoes for a week!) (((((HUGS))))) |
Quote:
do if they suddenly developed hydro...or any other neurological condition, for that matter. Actually, the subject of assisted living did come up (I forget how), but to make a long story short, I'm "not disabled enough". As I understand it, the program is for severely disabled people and I don't fall into that category. |
Quote:
((((HUGS))) |
It is, but since I'm going to have the nerves in my lower back cauterized
soon, it may not be considered a "major issue". Especially if my walking and balance/coordination improve afterwards. I won't know how much improvement I'll get until after the procedure. |
Quote:
|
I will and thanks!:)
|
Hey, I just thought of something... you know how there is a little slip of paper in with a ss check how it says something about helping you safeguard yourself against getting your power, heat, and maybe gas shut off... maybe when you get back on your feet and have absolutely HAD IT putting up with everybody but YOU running your life, you could look into that. What do you have to loose? I am not sure how much it will deduct from your monthly check if it does, but you have obviously tried your hardest to live ON YOUR OWN. It's just a suggestion.
The only thing that could be a problem is transportation. But if you made friends with some kindhearted neighbors, that is a whole other story. Then again, I bet rent somewhere goes tward gas, heat, and electricity anyway. Just a suggestion for when you get back on your feet. I have faith you can do this on your own. (I just know it!! :) ) I bet you allmost anything that people who feel "stuck" with you are going to complain because they "have to" make thier house accomadatable to you so you can be the "housekeeper". For years, my own DAD had enough nerves to pretty much say to my face (without actually saying it, of course "rolls eyes".) that I was the reason we weren't very well off all the time. (Like i can help it! please....) BTW. It's been a very long time since my last operation. But yet, allowed his "prized chiildren" to go to universities. (Granted they weren't the BIG ones like, U of M.) But yet, I am the one who got blamed for not being so well off all the time. Good luck. |
Quote:
actual check. It's a nice thought, though.:) |
Quote:
(I think someone was added to MY account because of the fact the people at my bank are complete morons and always had one of the numbers wrong on my account. (I mean the balance wither it was begining balance, total withdraws, not enought deposit, or ending balance.... I don't remember.) But it has ALWAYS been the banks fault. Except one time, wich was an accident. And I have gotten one "suprise" wich recently came back in my favor! (I just hope she doesn't take it upon herself to withdraw YOUR money for HER use. That would be terriable! I never really understood how that could work.) How do you like that, I'm the one who gets punished for something the bank did? Nice, right? |
It depends on what you mean by, "HER use". In addition to my own bills,
she's using my money to pay the cable bill up here and the internet bill in Delaware-neither of which are in my name, BTW.:rolleyes: It goes back to what she's said before: "There's no reason you can't do that little bit." Do you know for a fact that someone was added to your account, or is it something that you suspect? Would your parents tell you if they were added to your account, or do they act like you don't have the right to ask? Oh, you have no idea what these banks are capable of! My mother had to change her password at the bank, because they had locked her out of her account! See, my father was using the online banking at our computer and saved his password. Well, that meant that nobody else could sign in, because his account number kept coming up and we couldn't get it off. My mother tried several times to access her account and after 3 or 4 tries, the bank locked her out! You wouldn't believe all the phone calls, etc. that she had to go through to get it straightened out!:rolleyes: |
Quote:
I am curious... if its not to nosey... was your mom ALWAYS "co-signer" (whatever) on your accounts. Like she didn't trust you with YOUR money? To me, it just seems, that people on the "lovely' system are footing the bills an aweful lot. I bet you are expected to foot the bill when and if you and your mom and dad (that is if you are welcome to come) go out to eat. (My dad does this far too often. But for a PIZZA HUT pizza (wich everybody else but him likes) I don't mind. That way the people who like to taste sausage get to have sausage! The place dad insists on getting pizza from is not good at all. Bland sausage and mushrooms.... (Oh well, this is something I don't mind at all....) I bet you that when you are "forced out" of your house to live with your brother and his family, your mom is going to drop her name from YOUR account and make your brother or your sister-in-law co-signer. (That just stinks.... :() Hey, remember when I asked if you had someone (a third party) to talk to about the way you are treated? From where I am from, there is something called the FIA. (Do you have your OWN personal cell phone or own personal phone line? You can look up any local FIA in Maryland (that is where you said you were from, right? I don't remember. :) ) and ask for some help, but this is the tricky part, if you will be getting mail from them you may want to have it sent to a personal trusted friend of yours who respects privacy who can contact you directly when it has arrived. (But getting it to YOU is going to be tricky.) Good luck. :) |
Yes, she's always been on my bank accounts and credit cards. See, I
have a short-term memory problem and might forget to balance my checkbook or pay a bill.:rolleyes: Actually, I think the only way to get my mother's name off of the accounts and my brother's name on therm is for me to close the old accounts and open new ones. I'm not positive, but I think that's how it works. Wouldn't you love having to explain that to Social Security, my credit card companys, etc.? As for being "forced out", it may not be much longer-not so much "forced" to leave, but necessity. See, it's like this: Raven likes to prowl the neighborhood at 4:00AM. So, of course, I'm the one she comes to, to be let out. I go out to the living room...and immediately start having an asthma attack. Why? Because "Mother Dearest" spent hours sitting in the living room, reading books and smoking! Did I ever mention that I have asthma?! We've argued about this many times. My father and my brother have also argued with her about it. She refuses to quit. And, my mother wonders why I keep getting sick!:rolleyes: :mad: My father suggested that I talk to my doctor about her smoking and my asthma. Bottom line: One way or another, I won't be here much longer...:mad: |
Quote:
Why do they all want to have your brothers' name on your account? Is it a kind of like "just incase" type thing that if you got sick (incompasitated, ie shunt problems) and needed money for something he'll be a back-up. (If that is the only reason, that "sort of" makes sense. (I am NOT on your parents side with this, but in a twisted small way, it "sort of" makes sense. (That is someone being able to be there to access money you need if you get slammed with a catastrophic shunt issue. (I don't know. :)) (Maybe that is why it happened to me, you know, a "just in case" scenario-type thing.) By all means, talk to your dr about your mom's smoking. I bet you the seccond hand smoke can't be good. However, there is a "positive" twist about smoking I am sure you are well aware of. Rumor has it, the insane taxes added to cigarettes, go to help the system. It's true. I heard it on the news a very long time ago. (Gee. They should combine all the governmental funding programs and figure out who is on what and divide the funds equally.... (I'm talking everything. SS. Medicare, Medicaid... yadda, yadda....) Oh yeah, I am not sure if this is going to go against what you are saying about "somehow being put on your brothers insurance plan" and how you don't understand how it can happen since you have a "pre-existing condition" as what is is called, I think HIPAA does that, as long as you have had a certin ammount of "creditable coverage" or something like that, I don't remember the term, it can slide over. (I think.) I know this much because I spent a long time trying to figure this one out because my mom said Something about getting me on her health insurance. (She was looking into it, but I am not mad at her for suggesting it, in fact if something like that happens, I will be THRILLED because I ABSOLUTELY WILL NOT WILLINGLY walk away from perhaps the greatest neursurgeon in the upper midwest. (Indiana. I was lucky with this because my mom worked (and still works) in Indiana) when I was a kid/teenager.) I haven't brought up the HIPAA (health insurance portability and accountability act established in 1996(?)) yet, but I want to, het if it gets me off the medicaid system. I am all for it because I am NEVER sick and there are people who are really sick who don't get it. :( ) I think I have the link to that page somewhere, just ask for it. :) I wish you luck. Keep in touch. |
Quote:
part is, well, you know...:rolleyes: Oh, yeah, about the cigarette taxes: my mother buys her cigarettes in Delaware, because it's a tax-free state.:rolleyes: What Social Security should do is base the amount of money a person gets on the expenses they have. Show me one person who can afford a house, food and clothing on a little over $600 a month! I can't even afford the Medicare Part B deductible, which is why I'm still on my father's insurance. At the very least, Social Security should work with low income individuals to help them get into affordable housing programs. The way I see it, Social Security fails to understand that medical conditions cost money...beyond the so-called "cost of living". |
Quote:
You might be surprised. We all could be getting more out of the deal. Oh yeah, I know for a fact that my Aunt (someone who is pretty much the bane of my mom's and my existance) has put her two youngest kids on SS.... Is it me or does that seem right? I am thinking no becaus they're not adults yet (21). They don't have limitations of any kind. They're not even old enough to DRIVE. (Does that seem fair the the recipients or the ones who actually NEED it who were turned down?) The only "disability" thoose two have is the fact that thier mother (my aunt) acts like she's living in outer space. (space cadette. Belive me, you don't want to know. :rolleyes:) JMHO. They need to stop doing this kind of thing and putting KIDS on the system because thoose kids may be able to rise above thier disadavantages (a rough family life) and make something of themselves. It's almost like they get a "free pass" to be total unproductive citezens. (That's what all thoose scholarships are for. To help kids wiether or not disavantaged, to get to college. Who knows, one of theese kids could be the person that finds the cure for hydro that can reverse what has happened to the current hydro population as well and create a vaccine or something given to the mother once she knows she's pregnat to PREVENT it from happening; (Being born with it.) Again, I hope you don't get angry reading what I am saying.... but if the whole story I just typed up happens often. It's just not right. In fact, I don't feel right being on the system because my hydrocephalus NEVER acts up. (Well, on rare occasion.) Take care :) |
I guess I forgot to mention that I was laid off from my last job in Dec. 05.
I was put in a similar position (washing glassware for the labs) the first week of '06. The 4th day (Thursday) at the new position, just as I was getting ready to leave work, someone came in and told me that I might not be in that position anymore. Sure enough, Friday comes and just as I'm getting ready to leave, someone comes in and hands me a letter saying that, "due to the nature of your medical condition, it is considered unsafe for you to continue working in glassware." The "medical condition" in question was epilepsy. So, they were going to put me in Housekeeping (apparently, that's all I'm good for). Guess what? It was middle shift! Did I mention that I have epilepsy? Did I mention that I can't drive? Did I mention that I don't live near a bus stop? Which part didn't they get??? To make a long story short, I've been on SSDI since '98. As for the kids in the system, I don't know the rules, but I'm pretty sure that the parents have to prove that the kids are not capable of working. But, that's just a guess. |
Quote:
|
With all the spinal problems I'm having, there's no way I could work.
Plus, like I said, there's the transportation issue. Besides, I was already fired once (although they never called it that), because I have epilepsy. Can you imagine what would happen if I needed a shunt revision? That already happened while I was at my last job. My shunt failed in '94, while I was still working. A short time later, I got a reprimand from my supervisor, about the time I missed (3 months) while I was recovering from surgery. While he claimed that he knew it wasn't my fault, I knew he was doing it because of "company policy". BTW, it sounds to me like your aunt never grew out of her own childhood.:rolleyes: |
Quote:
Regurading you: You got fired for missing work..... A sutuation you couldn't avoid. Well that stinks. I almost skipped my graduation from HS because unknown to everybody, I had a BLOCKAGE in the little tube, that was painful. I was sick for a very long time, but just chalked it up to stress and the excitement of being out of school and done with all the insesitive comments. About you being let got from your job due to something you can't control. (The post-op recovery time.) I think there is an act the prohibits that from happening, then again it depends on what year you got fired and when the act was enforced. I think its called "Medical leave act", I think I am missing a word in the begining, I'll look it up later..... Might be the same medical leave act that protects parents from loosing thier jobs to take care of criticallly ill family members. Take it easy as much as possible. You'll need your strength. :) |
All times are GMT -5. The time now is 10:21 PM. |
Powered by vBulletin Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.