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    My husband is a c2/3 tetraplegic due to a motorcyxle accident 6/23/15....we were living at his parents at the time with our two week old son and after a long difficult road half way through accute rehab his parents told us we could no longer live at their home due to the fact my husbands newly aquired disabilities were too much of a distirbance from there day to day kives. So because he was considered homeless and had no address to discharge to he was kicked out of accute rehab and sent to a regular medical unit with no therapy no rehab services at all until i could find somewhere for us to go. I was able+to go througj the shelter network in our hometown and he was able to discharge to the motel the county put us in (mind you he was discharged with no wheel chair, outpatient services, or equipment, etc NOTHING) Now we are in a honeless shelter and have to be out by the 12th of march, my husband our 9month old baby and myself. We have no idea where to go and whats available to us, our case worker is useless and everyone i try and reach out too just dont know what to do. We live in the bay area CA can anyone please offer some kind pf advice or resource we are unaware of? Thanks for taking the time to read my short (lacking much detail) story!

  • #2
    So is he uninsured? He is ventilator dependent? What is his actual ASIA level of injury and how complete? What rehab center was he at? Was a nursing home proposed? Is he eligible for MediCal (Medicaid)? Was he unemployed prior to this? If employed, is he getting state disability insurance? Have you applied for section 8 housing (wait for this can be years)? Are you employed?

    As you probably know, the Bay area is one of the most expensive housing markets in CA. You probably will need to leave that area to find more reasonable housing, such as more rural Northern California or even Nevada or AZ. Since his family has apparently rejected him (there must be some history behind this???) it would appear that unless you have jobs, etc. that would tie you to the Bay area, you need to move to a different area.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


    • #3
      Try contacting the Center for Independent Living (CIL) in Berkekey for advice:

      3075 Adeline Street, Suite 100
      Berkeley, CA 94703
      Voice 510-841-4776
      Fax: (510) 841-6168
      Email: info@cilberkeley.org

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      • #4
        Thank you dragon fly thats really helpful ill do that, as for his asia level he is a asia C at c5 incomplete sci. Not vent dependent has full independant control of bladder bowels and 4/5 in most of his lower body, his arms are the weekest out of everything but is still able to do a lot with what function he has, we were both unemployed at the time of his accident, i had just had a baby a few weeks prior and he was working under the table, he didnt have enough work history to qualify for ssi but he is going to be getting ssdi and i was approved as his caregiver through IHSS, as ive been the only one doing the leg work on everything from getting him the proper med equipment to staying on top of social security so we can have icome generating, its been slow going to say the least, i honestly am doing the best i can with what i know this is just all so new to me its overwhelming at times but anyhow i went to the housing authority and i wasnt able to get onto section 8 waiting list or anything similar because all of the voucher based program lists are currently closed, my parents are in the santa cruz area and help where they can but are limited in what they can do. I know the bay area is pricey but im not willing to leave whatever family support weve managed. O hang onto, im rebuilding whatever i can with his family by showing them we are still going to be able to thrive and grow as a family after his accident and its putting them more at ease, but i dont hold hope wed be welcome back there, thats just a whole other subject i dont want to touch base on at the moment but let me just say i was raised in a home where we were taught to not turn ur back on family and i def dont feel that my husband should be punished because they feel he made a mistake by riding his motorcycle in the first place, hes gone througj quite ebough as it is and his mental and emotionak state shows it like you wouldnt believe, theres a lot to the situation and this is honestly my first time reaching out to anyone in this sort of way so i apologize if i sound all over the place, thanks again for your time i greatly appreciate any help or advice

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        • #5
          Sorry yes he has medical and he went to santa clara valley med sci rehabilitation center, he was there the same time the people from irland who fell from the balcony in berkley were there, a nursing home was proposed and thats where he was supposed to go but at the last minute they told him he couldnt go because he was too young for that sort of facility (hes 42 years old i am 27) they stuck him on the accute side of the hospital for 4 weeks before i was able to get us on the shelter program and they dischaged him to the motel we stayed in, the entire time he was on the accute side he recieved no PT OT and almost all the nursing staff were not trained in bed to chair transfers and refused to get him out of bed, even with a hoyer lift) the only time he saw the light of day is when id go up with our personal slide board and get him into his wheel chair. My husband was a very difficult patient ill be honest, he was angry and mean at times and just outright difficult to be be around, never abusive to the staff, just upset at the world is the best way i can put it, so they all really didnt want anything to do with him. Its just sad cuz he has so much potential. I finally got him into stanfords outpatient neuro rehab 2 times a week with supportive at home therapy with just myself and him with what weve learned with his therapist, ive worked so incredibly hard with the amazing help from stanfords neuro rehab therapists to get him to the level hes at (self transferrs from chair to bed, self car transfers, standing and walking in zero grav harnis and now trans to walking with a walker)but its made housing take a back seat which is not good, hope i covered all ur questions and this clarifys things a bit.
          Last edited by mehimandsci; 02-20-2016, 04:34 AM. Reason: typos and missing info

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          • #6
            Side note: he still has no wheel chair btw other then the one they are loaning him which is not at all helpful other then having a vessel with wheels to get him places which isnt easy. Its incredibly hard, taking care of the things that are normally supposed to be taken care of at accute rehab, all by yourself.

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            • #7
              I am not understanding why he has no wheelchair. MediCal will pay for a wheelchair, although not anything real fancy. The program at Stanford should be able to write a prescription for this. Also, I assume he is on SSI, not SSDI. It is SSDI that requires sufficient work history, not SSI.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • #8
                Wow Santa Clara Valley Hospital SCI unit/staff is like best around. Thats where they flew me. Unless things have degraded substantially which would be odd cause thats Silicon valley area & the official Hospital in the area, even if in 'Acute' wing? they should/would have equipped you with loads of resources and had staff there to help? Sounds not right..
                Sorry 2 hear hope things work out soon!
                Last edited by Stormycoon; 02-21-2016, 02:34 AM.
                I am not your rolling wheels
                I am the highway
                I am not your carpet ride
                I am the sky
                I am not your blowing wind
                I am the lightning
                I am not your autumn moon
                I am the night, the night..

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                • #9
                  well when he was dicharged without one I contacted mediCAL to first get him a PCD (one through one of the county clinics cuz stanfords internal med department doesnt accept medi-Cal unless you were previously a patient with them) and she wrote a persc for one. the medical supply company that contacted us (M&M in daly city) gave us a loaner while his specialized chair was being ordered. we get a call saying that company isnt able to provide the kind of chair he needed and referred us to numotion. they had their PT come out to motel we were in to do a wheel chair eval and when the gentleman left he told us in 4-6 weeks we should have his new custom wheel chair. well this was back in november and when i call medi-Cal or the wheel chair company they say their is no history of a chair being ordered for him. as far as the social security, I guess so, its hard to keep track of these things (which is why i have it all written down in my notebook I call my brain). but yes he is on what they referred to it as "emergency social security insurance....", which isnt at all an income we would be able to live off of as im sure your well aware of but I guess thats what happens when your skip out on paying old uncle sam. There were def lifestyle choices made prior to the accident that we are paying for now to say the least.

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                  • #10
                    I have heard all the same things and I do believe they have one of the best facilities and a lot of the staff there is wonderful but outside of that rehab its just a county hospital. My husband 100%w was dedicated to rehabilitating and couldnt wait to get up every morning to do all his therapy but he had such horrible depression he was rude sometimes and bitter and he had it out with their speach therapist because he was on a restricted diet even though when he left ICU he was on a regular diet, they didnt care they said they had to go by their rule book and the guidlines of the facility based on his injury, he was sipposed to be getting 3 hours a day of therapy but the nurses would come 30 min late every morning to get him dressed and ready so every day he missed and entire session of PT and OT (usually OT which was what he needed most) and when he was actually taken to the gym for therapy he would be stuck on a pedal machine and the tberapist would just walk away for the entire duration of the session. the more he complained about anything the less and less he got from them. Like I said I understand my husbands attitude was not the best but he was never abusive towards anyone there and he was always 100% dedicated to recovery in hopes hed be able to hold our new baby again one day. I just feel that his overall mood is something that should be expected from someone in that situation and they would be trained and used to dealing with patients like that. I also think a part of it had to do with the fact that they were under a lot of pressure to rehabilitate the kids from Berkley balcony collapse incident because of the publicity that went along with it, they were all over the news and I dunno maybe they just didn't have time or patience to deal with my husband and his attitude at the time. (I will say it was amazing seeing what they were able to do for those people). I think my husband just is one of those one offs that slip through the cracks, I am glad to hear you were able to benefit from being there and know they have a great facility and program, i just wish we shared the same experience as Ive seen a lot of others have had.

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                    • #11
                      Quote from your post:
                      I also think a part of it had to do with the fact that they were under a lot of pressure to rehabilitate the kids from Berkley balcony collapse incident because of the publicity that went along with it, they were all over the news and I dunno maybe they just didn't have time or patience to deal with my husband and his attitude at the time.
                      Mehimandsci:
                      Just a comment that it may help the situation to focus on more positive opinions. I'm sorry that you feel that the staff would do something like this. When I had hospital PT and OT for a major setback with pneumonia, I too was set at a table to crank a stationary bike for about 40 minutes each day, then progressed to a device to do "dips" (called a rickshaw). Both of these significantly improved my breathing and strength.
                      Do you know how to get him going on Out-Patient Therapy?

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                      • #12
                        Is his depression being treated now? This is very important.

                        Yes, you will need to keep on top of things about his wheelchair. Call the provider to ask what is going on and continue to check in every few weeks. It is very common for wheelchair orders to take months, to get messed up or never get submitted, and it is important to monitor how things are going.

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                        • #13
                          mehimandsci; Keep writing someone may eventually see your problem in print and be in a position to help you. I think most of us understand depression, despair, and anger, but to dwell on these things is wasted effort, it takes too much energy. This energy is better put to use somewhere else. They also exacerbates his attitude towards others issues. But this is all easier to say than actually do.

                          Perhaps a "shrink" is in order, I think the accident, the pressures of his mental situation in his current place in life, young child, wife as his only physical support, and likely just his desire to be what society demands, he be the father and family support. And he sees this is not at all possible in his current situation. Major league frustration with it all !!!!!

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                          • #14
                            Welcome to the real world. You do need a notebook and several folders. Get a new prescription. Call the people who wrote the first one. Get a copy for yourselves! Write the date, number if any, prescribing doctor and who it was sent to, get a name besides the company's and their phone number, and write those in the notebook. Put your copy of the prescription in your "script folder". Then call the company making the chair every week. Write down the date, time, who you talked to and where in the process the chair is. Any problems call the prescriber and your MediCal contact. Yes, any DME (durable medical equipment) you will have to jump through hoops for. Sounds like you are actually very lucky if he is beginning to work with a walker. At C-5 he could be toally dependent on you for the rest of your lives.

                            Do call the CIL and write down all the questions you have before calling. Can any family baby sit ? It sounds like your husband can be left alone as he can transfer and has bladder and bowel control. But it sounds like you will be the bread winner for awhile. Your husband should be calling and researching paratransit, any near by area that will put you on the section 8 housing waiting list and cutting grocery coupons is great therapy. If he needs special scissors or cooking utensils look at JC Penny or Bed, Bath and Beyond or Target for OXO Good Grips brand things. A OT can order them but you'll pay a fortune for them while at regular stores they are pretty cheap. He should start learning to at least prep things for dinner as it is good OT therapy and you'll be working. Good luck.
                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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