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    Seeking independence

    I am seeking any information and resources available that could assist me obtaining independence. I am 28 years old, a quadriplegic (spinal cord injury) on Medicaid/Medicare/CAPS and desire to be on my own. Currently my father is my Caregiver. He is 60 years old and his health is declining. I am fearful that I could have to transition to a nursing home. Is that my only option? What are my options? He only provides assistance when my aids can not assist me (i.e. weather). I see other quadriplegics living independently. If you can weigh in on this subject matter, please do so. I would be very, very grateful. I have sought out help from Independent Living in my area but they will only assist me within my current state of living and not with the transitioning process. I need to get on my own. I believe I can do it. Any information would be wonderful. Best regards.

    #2
    You might try contacting www.APlaceForMom.com Regardless of their name, this organization is well aware of assisted living facilities thruout the country...for all ages and sexes.

    Comment


      #3
      What's your level leo? You don't have it in your profile. I'm a C6 SCI and live alone, independently w/o assistance. Are you looking to get into an Apt, house, assisted living center or ??

      Comment


        #4
        A few questions:

        How many hours of attendant care do you have now? How is this funded? Is your father paid to provide part of your care?

        What is your source of income? SSI? SSDI? Work? Are you in school?

        Can you afford to rent a 1 bedroom or studio apt. in your area on your current income? If not, do you have friends who would consider sharing an apt. with you?

        Are you eligible for Section 8 housing? If so, are you on the waiting list?

        How you worked to get the care you need as organized as possible and into as short a time as possible (such as getting up in the AM, doing shower, dressing, ROM, bowel care, bladder care, etc. within a 2-3 hour time period, with perhaps 1-2 hours needed for bedtime).

        Your profile says you are incomplete C4/5. How incomplete? Are you able to feed yourself? Can you get food out of the refrigerator by yourself? Do any meal preparation?

        Do you turn at night independently, or have a turning mattress/bed, or does someone turn you?

        (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


          #5
          Originally posted by leothelion View Post
          I am seeking any information and resources available that could assist me obtaining independence. I am 28 years old, a quadriplegic (spinal cord injury) on Medicaid/Medicare/CAPS and desire to be on my own. Currently my father is my Caregiver. He is 60 years old and his health is declining. I am fearful that I could have to transition to a nursing home. Is that my only option? What are my options? He only provides assistance when my aids can not assist me (i.e. weather). I see other quadriplegics living independently. If you can weigh in on this subject matter, please do so. I would be very, very grateful. I have sought out help from Independent Living in my area but they will only assist me within my current state of living and not with the transitioning process. I need to get on my own. I believe I can do it. Any information would be wonderful. Best regards.
          Please consider recontacting the Center for Independent Living!! Are you sure you contacted one dealing with independent living for persons with a disability? That's what those centers are for. Suggest you call them to determine if that's what they do and set up appointment in person to discuss transitioning into your own apartment, home, etc.. Push the issue. Some "centers for independent living" are different organizations set up for elderly only. Centers for Independent Living for disabled were set up after Federal legislation, I believe under the Rehabilitation Act of 1973 - I was politically active for passage of the Act.
          Also, Google the name Ron Mace. He and his wife were well-known disability activists in North Carolina many years ago and as a paralyzed architect, he advocated for Barrier-Free housing. Hubby and I lived in NC for two years - met him once in his office in Raleigh.
          I know you can get a place of your own!
          Last edited by triumph; 3 Mar 2015, 11:25 AM.

          Comment


            #6
            Originally posted by willingtocope View Post
            You might try contacting www.APlaceForMom.com Regardless of their name, this organization is well aware of assisted living facilities thruout the country...for all ages and sexes.

            Thank you so much

            Comment


              #7
              Originally posted by tumbleweeds View Post
              What's your level leo? You don't have it in your profile. I'm a C6 SCI and live alone, independently w/o assistance. Are you looking to get into an Apt, house, assisted living center or ??
              My level is c5/c6. I am open to an apartment, house or an assisted living center. I think the apartment will be more reasonable since I wouldn't be able to upkeep the house. And I'm not sure how to go about assisted living centers.

              Comment


                #8
                Here are the Independent Living Centers in NC:

                http://www.ilru.org/projects/cil-net...ory-results/NC

                (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


                  #9
                  I get three hours in the morning and two hours in the evening. It is funded through Medicaid. My father does not get paid to be a part of my care. My primary source of income is SSDI. I currently do not work and I'm going back to school. I am seeking a job currently though. I can afford an apt. I don't know if I have any friends who may.


                  I have not applied for section 8.


                  I am a C-5 C6. I am able to feed myself and I can get food out of the fridge raider and prepare my own nails. I usually sleep through the night. I get put in the bed at one and get woken up at 9 AM. I haven't had a bedsore and I've done this routine for years.

                  Comment


                    #10
                    Thank you so much for your input. I contacted the Independent living which was connected to vocational rehab. I will find out if it was the correct organization or not. Thank you again I will look up Ron Mace.

                    Comment


                      #11
                      Originally posted by triumph View Post
                      Please consider recontacting the Center for Independent Living!! Are you sure you contacted one dealing with independent living for persons with a disability? That's what those centers are for. Suggest you call them to determine if that's what they do and set up appointment in person to discuss transitioning into your own apartment, home, etc.. Push the issue. Some "centers for independent living" are different organizations set up for elderly only. Centers for Independent Living for disabled were set up after Federal legislation, I believe under the Rehabilitation Act of 1973 - I was politically active for passage of the Act.
                      Also, Google the name Ron Mace. He and his wife were well-known disability activists in North Carolina many years ago and as a paralyzed architect, he advocated for Barrier-Free housing. Hubby and I lived in NC for two years - met him once in his office in Raleigh.
                      I know you can get a place of your own!
                      Thank you so much for your input. I contacted the Independent living which was connected to vocational rehab. I will find out if it was the correct organization or not. Thank you again I will look up Ron Mace.

                      Comment


                        #12
                        Good for you for trying to figure it out. I wonder if Vocational Rehab might be able to assist if you went to work or school. I think if you went away to college they would pay for attendant care while you are a student. Don't know if it is an option.
                        "Never argue with an idiot; they'll drag you down to their level and other people may not be able to tell the difference."

                        Comment


                          #13
                          Just to clarify, having worked for voc. rehab. (state organization receiving federal funds) for many years, a person had to be involved in a vocational goal of some kind to receive assistance for schooling or job seeking assistance. Their task is not directly helping a person transition into independent living but sometimes they work closely with Centers for Independent Living (separate organization). I worked with many quadriplegic clients. Some of their jobs were, for example, salesperson, engineer, program assistant, congressional aide (he moved from parents home to Washington, DC to take the job), store manager, Recreation Therapist, etc.

                          Comment


                            #14
                            Originally posted by leothelion View Post
                            I get three hours in the morning and two hours in the evening. It is funded through Medicaid. My father does not get paid to be a part of my care. My primary source of income is SSDI. I currently do not work and I'm going back to school. I am seeking a job currently though. I can afford an apt. I don't know if I have any friends who may.


                            I have not applied for section 8.


                            I am a C-5 C6. I am able to feed myself and I can get food out of the fridge raider and prepare my own nails. I usually sleep through the night. I get put in the bed at one and get woken up at 9 AM. I haven't had a bedsore and I've done this routine for years.
                            Are you worried you won't be able to live on your own with your function, or are you asking more about the logistics of how you go about getting your own place?

                            Comment

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