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Thread: SCI Moron - REALLY!

  1. #1

    Question SCI Moron - REALLY!

    I am the Moron I mentioned in subject in case it wasn't clear.
    Here goes....

    I have no idea if I'm posting on the correct board but I need some advice and other than here, I do not frequent any other disability forums since New Mobility many, many years ago.





    I was injured in 1992 (incomplete 5/6 quad) and my mom basically took care of everything and maybe thought she was helping by giving me nothing but living each day to worry about but she was wrong. Now that I'm in charge of everything, I'm COMPLETELY lost and whenever I attempt to read the government disability websites I just become more frustrated and confused. So much so, that I'm still using the same bed I received when first injured (no motor anymore, springs sticking out and all) among other things that should have been replaced long ago. This is because I just don't know what I'm entitled to or what to do about anything.



    My parents are getting old, we may lose our house, I have no financial savings because my parents spent all the money I received in TWO separate settlements and I will not allow myself to be placed in an institution if I lose my home but what choices do I even have??


    I have 2 places I could move to that are warm, which I need desperately because winters in NJ leave me trapped in my home due to the severe pain the cold weather creates for me.
    The problem is that they are different states. Is it possible for me to move to another state??? How?? Will I lose benefits? Will I have money to live? I'm pretty good with technology and willing to work but that doesn't help me right now.


    Many people refer me to websites about some of this but like I said, just more frustration and confusion leading me to feel hopeless and depressed. I don't even know who my monthly checks come from exactly?.SSI? Disability? That's how bad off I am and yes I'm embarrassed about it.
    My pain meds have clouded my brain after taking them so long and I find myself easily confused when it comes to trying to learn these things on my own but I'm hoping that's not unsolvable.


    I guess I'm hoping there is someone out there who knows about these things and teaches idiots like me how to survive without a lot of family support. Is there?


    It took me a long time to finally admit these things and ask for help so please don't criticize me. I honestly would have learned if I had known how difficult it would all be in the future.


    I would really like to move to a warm state. My choices are Arizona or Florida but I hear Florida would take away benefits. I have friends that offered a place for me to stay in AZ if I needed and even said they would say I pay rent so there is that.
    Any person/place that could help me or any advice would be deeply appreciated!
    Thanx in Advance
    Last edited by Erica; 08-20-2015 at 09:07 PM.
    In 92 I thought I'd play safe & let my sober friend drive us home


  2. #2
    Moderator jody's Avatar
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    I moved to south carolina. It can get cold, but not much snow. It's less expensive than NJ. I moved from montgomery county pa. it took a couple months to get my ssi transferred over. I didn't lose income, but the rules are a little different here.

    I was sent to a seniors center for help sorting insurance, and resources out. they have volunteers at senior centers that can explain complicated or important stuff to you.

    You can find out about your income, and your status by calling your local social security office. they can pull up your number and tell you what you need to know.

    they have subsidized housing here for lower incomes and for disable people. I share a place so I can't get subsidized housing, but I notice it was harder finding an apartment that wasn't subsidized than one that was.

    the rent in my part of south carolina is $300-600 for a one bedroom apartment depending on area, and quality of the apartments.

    Im paying 675 for a large three bedroom apartment. I was paying 1500 in Pennsylvania for the same apartment.

    It is hot in upstate south carolina, but not terribly humid unless it's about to rain. It is very beautiful.

    they have free buses depending on where you live. if it's inside town or city, there is more chance there is a free public bus.

    To get yourself a new bed, if you need a hospital bed, or other medical appliances, you can make an appointment to see a physiatrist. A physiatrist can assess your needs, and write a prescription for what you need. they often know what is covered depending on what kind of medical coverage you have.

    It would be nice if you had a friend that was good at dealing with insurance and medical coverage.

    You said you are incomplete. can you do most of your care? do you drive? Is it possible to taper down on pain meds so you can function better? there may be new ways to treat your pain you don't know of, that won't make you so dopey. Maybe it's even a combination of drugs affecting you, if your pain medication isn't that much.

    Iv recently been working on cutting my pain meds, and though it hasn't been easy, It isn't the worst thing ever. Im going to have to figure out a way to treat some of my nerve pain, and maybe a nerve block or something.

    I don't have an addiction to pain meds, however I do have a long term physical dependency.

    I have gone down half of what I was using, which was a 50mcg fentanyl patch and 10mg of oxycodone on the day I changed my patch.

    like I said, it hasn't been easy. but It must be done, at least for me personally.

    quite a few of us have had to do that. Some by choice, for one reason or another, and some because they got cut of by the pain clinic they were going to.
    It seems like the worst thing ever if you get cut off. I was always afraid of that. there might be some meds that can help you with the withdrawal.

    Iv only used something for spasms, at night, and promethazine for nausea. no methadone, or suboxone, just over the counter pain meds in small doses.
    I want to cut my patch down from 25mcg to a 12.5, in another month.

    You can do this new adventure. It might not be easy but it's not an impossible thing.

    feel free to ask about anything. someone is bound to have been there.

    I had to move because neighbors burned my house down twice in four years. and it basically wiped me out completely. my small settlement, and my small inheritance. I had a friend who moved to south carolina, and offered to rent me half his apartment. I was pretty scared to do the move, but by then I was homeless and starting to starve and freeze a little.

    I actually like it here, and iv been able to scrape by.

    A lot of care cure members have had to move. some to other states.
    Last edited by jody; 08-21-2015 at 01:00 AM.

  3. #3
    Moderator jody's Avatar
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    if there is a center for independent living in your area, call them and explain your situation. there are none of those here and that's why I was sent to a seniors center, though, im not a senior citizen, the volunteers will help disabled folks as well.

  4. #4
    Erica you have been pretty good at taking care of business over the years but yeah these Social Security and medical insurance is not easy but the best way to learn is ask questions and get involved. You are likely on SSI/Medicaid with Social Secuirity and most other states like people on SSI because they get funding for each SSI client from the federal government. Before you got gov Christie Jersey was very good meeting the needs of the disabled population but now things are tighter from what I can see over the internet but there are probably still ways to meet your needs. I suggest seeing your primary doctor and get a referral to PT or OT to get the process started on a new bed and how ever else they can help, possible a shower bench. Not sure about Florida but if that same friend asked me to move down there I might too. Arizona is friggin hot for us SCI or anyone half the year. My best friend spends 6 months in Oregon on account of the heat. Sounds like to biggest thing you need is a source of money to move and maybe a place to land. Oregon is another place I recommend. As you know a number of people from New Mobility have moved up here over the years it is mild in summer and mild in winter here on the coast. Not sure I am a whte knight anymore but will try and help where I can. You will do ok Erica

  5. #5
    Hello Erica,
    It's great that you are taking on this challenge. The "independent living movement" began in the late 1960's and early 1970's specifically to help empower disabled individuals to plan and live their lives according to their own wishes. As Jody suggested, one place to contact is a local Center for Independent Living. These centers are located in each state, and I would suggest that if you relocate you select a place near a city which has one of these centers. They provide counseling/coaching, referral, etc. to help guide you toward your goals. They may be able to direct you to accessible housing. By the way, senior housing that is built with federal funds will rent to disabled persons who are NOT seniors. Some of these are quite nice and offer services like cleaning, laundry, meal plan, all for add-on cost, or nothing other than just apartment rental. Your attendant care would be your responsibility and may be part of your SSI grant.

    In addition, each state has several offices of state Vocational Rehabilitation Services - found in the white pages under "State" government listings. If you are interested in testing, training, higher education, this is the place to discuss your vocational plans. Social Security is generally under "Federal" government listings, and might be another place to visit regarding your benefits, like SSI (for disabled person with minimal work record), or SSDI (for disabled person with sufficient employment record prior to disability).
    Just a comment - you said you heard that 'Florida would take benefits away' - please do your own research on this. I'm a former counselor and often got frustrated when a client stated things like "my cousin told me...", "a friend heard that...". You would not believe how a person can go astray by only relying on advice provided by relatives, friends, etc. who do not have direct information or experience, but want to "help".

    I hope you will continue to post regarding your progress as it will help others too.
    Very best regards.

  6. #6
    Quote Originally Posted by jody View Post
    if there is a center for independent living in your area, call them and explain your situation. there are none of those here and that's why I was sent to a seniors center, though, im not a senior citizen, the volunteers will help disabled folks as well.
    I actually have an offer to move in with someone in AZ but just wanted to be able to make sure I could get what I need if I do go there.

    Im nervous but really want my independence. I worry a lot about the pain med but I hate the dependence on it at all. I've managed to take the bare minimum so it won't or at least I hope it won't, be as difficult to discontinue if I need.

  7. #7
    Quote Originally Posted by backwoodsrider View Post
    Erica you have been pretty good at taking care of business over the years but yeah these Social Security and medical insurance is not easy but the best way to learn is ask questions and get involved. You are likely on SSI/Medicaid with Social Secuirity and most other states like people on SSI because they get funding for each SSI client from the federal government. Before you got gov Christie Jersey was very good meeting the needs of the disabled population but now things are tighter from what I can see over the internet but there are probably still ways to meet your needs. I suggest seeing your primary doctor and get a referral to PT or OT to get the process started on a new bed and how ever else they can help, possible a shower bench. Not sure about Florida but if that same friend asked me to move down there I might too. Arizona is friggin hot for us SCI or anyone half the year. My best friend spends 6 months in Oregon on account of the heat. Sounds like to biggest thing you need is a source of money to move and maybe a place to land. Oregon is another place I recommend. As you know a number of people from New Mobility have moved up here over the years it is mild in summer and mild in winter here on the coast. Not sure I am a whte knight anymore but will try and help where I can. You will do ok Erica

    Thanks...whenever I look up info about my monthly check it says You won't lose money if u move to another state but then says how much u get depends on something else....I'm like huh???
    Then it mentions some states give more as a supplement (which is what I thought I got from Nj) and says some states don't offer it such as AZ, FL...etc...so I lose money?
    see? Confusing!

    Im considering AZ cuz it's warm, my brother lives there and I already have a roommate offer. It's just the best offer on the table I have right now.
    And your right NJ got worse. I used to have no worries and now I get nothing but red tape for ANYTHING I need which makes me frustrated and give up. I still use the same bed and manual chair from when hurt in 92!
    They refuse to get me a new bed because I need a full size so I can turn and move on my own (I'd fall off a twin) but that's all they will offer me is a twin.

    Last time I tried sticking with something it backfired. I finally decided to change home health agencies cuz they continually left me hanging and sending no one....they got a new agency and cut my hours in the process.
    This scared me into thinking if it's tolerable, don't f*ck with it ya know?
    so I continue to sleep on my spring riddled bed and my chair with no leg rest because they make me regret everything.



  8. #8
    Wow, that really sucks that your parents stole your money, that's not right. But I'd think about Section 8 housing if I were you, there are lots of them in Fla. As I remember I think you pay 30 percent of your income for rent. AZ is way too hot, Florida is hot enough summers, but great in the Winters. They have great disability access and many programs and stuff like that.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  9. #9
    Quote Originally Posted by triumph View Post
    Hello Erica,
    It's great that you are taking on this challenge. The "independent living movement" began in the late 1960's and early 1970's specifically to help empower disabled individuals to plan and live their lives according to their own wishes. As Jody suggested, one place to contact is a local Center for Independent Living. These centers are located in each state, and I would suggest that if you relocate you select a place near a city which has one of these centers. They provide counseling/coaching, referral, etc. to help guide you toward your goals. They may be able to direct you to accessible housing. By the way, senior housing that is built with federal funds will rent to disabled persons who are NOT seniors. Some of these are quite nice and offer services like cleaning, laundry, meal plan, all for add-on cost, or nothing other than just apartment rental. Your attendant care would be your responsibility and may be part of your SSI grant.

    In addition, each state has several offices of state Vocational Rehabilitation Services - found in the white pages under "State" government listings. If you are interested in testing, training, higher education, this is the place to discuss your vocational plans. Social Security is generally under "Federal" government listings, and might be another place to visit regarding your benefits, like SSI (for disabled person with minimal work record), or SSDI (for disabled person with sufficient employment record prior to disability).
    Just a comment - you said you heard that 'Florida would take benefits away' - please do your own research on this. I'm a former counselor and often got frustrated when a client stated things like "my cousin told me...", "a friend heard that...". You would not believe how a person can go astray by only relying on advice provided by relatives, friends, etc. who do not have direct information or experience, but want to "help".

    I hope you will continue to post regarding your progress as it will help others too.
    Very best regards.

    Ahhhh voc rehab....another service that basically screwed me .....sorry I sound so negative, I'm really not.
    However they put me in serious debt (voc rehab). I wanted to go to school so I contacted them for help. I chose an art school and my counselor encouraged me to enroll and begin since I already put in the paperwork to have them pay for it. She told me I'd definitely be okay and they'd pay any loans for school. 2nd semester I start worrying and ask if maybe I should stop going until it's all settled. Counselor says "No, keep going...it's already done basically and it's just about waiting for official approval notice".
    Reluctantly I continue. 3rd semester I make sure again, really nervous now. She aggressively persuades me to not give up and just keep doing well. She says it's coming very soon.

    After third semester I again contact her and she says they don't want to pay because they don't think I will be able to find work in the field I've chosen (Graphic Design...which I'm great at by the way) and says if I want to go to school for something they think I could actually do, then they'll pay. She says sorry.

    I'm in serious debt, can't pay loans and even though I was on the deans list The entire time, and they wanted to use my actual artwork for the school advertising, I get no access to my records or grades until I pay off loans so it's like I never went.

    So so as you can see....My experience with all things disability, have basically terrified me.

    I was also told by the gov personally that I was on the list to get section eight only to find years later I was never on. Then applied again through housing, told I'm on list again and same thing happened years after that. I've waited almost 10 years for something I was never getting.

    I hate to sound so negative because I'm absolutely not but my experiences have not helped.

    As as for money. I've planned to sell off most of my belongings and I've been given a huge amount of items by relatives that are worth money to sell off...so I'm hoping that helps a lot.
    Im actually tired of worrying about all these material things that I don't need and truly want to downsize. This should also make moving MUCH easier.



  10. #10
    wow that sucks but sounds to me like it might be a good thing if you move out of state and start a new. Reason some states give an increase to your social security is usually because they have a higher standard of living like California. You are smart Erica and it sounds like you have already began preparations to live independently not with your parents. I have numbers for each state if you cant find it but once you decide on a state be sure and contact that states disability department and get things set up for a smooth transition. Also most big cities have a CIL, Center for Independent Living you can find and chat with folks online.

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