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Thread: I need advice to escape my current toxic environment.

  1. #1
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    I need advice to escape my current toxic environment.

    I'm 26 years old and a C4/5 injury. I just passed the fifth anniversary of my injury. I'm currently stuck in a stagnant situation where I don't see much hope for improvement. I was hoping to get some advice on how I can change this. It all boils down to two main problems:

    1. I have an extremely over protective mother.
    2. Our inability to find a consistent caretaker.

    I will elaborate more on these two problems first, a short history on my injury.

    I was studying to become an aeronautical engineer but at 21, I fell off a cliff and broke my neck. I stayed in rehab at Santa Clara Valley Medical Center (henceforth SCV) for three months which was slightly longer than their average duration but this was primarily because I was part of a clinical trial for SCI. After those three months, I went home in San Francisco which is an hour and a half away from SC. I liked my experience during rehab but I felt it didn't really prepare me for complete ignorance of every day society towards spinal cord injury. I ended up with a minor bedsore after about a month so I went to one of the local hospitals here in San Francisco. For reasons completely unknown to me, they debrided a giant hole in my sacrum for what was an extremely minor bedsore. I suspect it was either because they didn't turn me while I was hospitalized or they made a mistake about what state my bedsore was. I spent the next 2 and a half years hospitalized because of that debriding, the following flap (which seems to be stretched too tight) and another bedsore from the hospital.

    I have been home for over a year now but my situation is very stagnant. I'm still stuck in bed 24/7because of the difficulty in finding a caretaker and this difficulty is increased by the overprotectiveness of my mother. An example would be turning. One teaching a new caretaker, my mom will have something like 50 or 60 different steps to turning me which includes how thick pillows should be, what direction to flatten creases and just all-around extreme perfection towards something that doesn't require it. My mom also seems to think that I'm made of glass which is extremely frustrating. I insist on trying to go on a diet but she refuses to cooperate often starting huge arguments because I refuse to eat large amounts. My stepdad is also a complete idiot who doesn't understand the SCI has no cure and frequently tells me to just think about standing up in order to heal myself.

    These problems are increased because we can't find a consistent caretaker. My mom's extremely high requirements turned away most people and the situation more than often ends up with the caretaker we hired taking care of my parents household needs so my parents can take care of me. This is really difficult for me because I'm trying to become independent from my parents due to my mothers overprotectiveness. We don't have funding beyond IHSS to hire caretakers either. I do have around 300 IHSS/WPCS hours which currently goes to my mom and stepdad.

    The only people who are willing to do the necessary work for minimum-wage seem to be almost exclusively Hicks from China. Let me explain, my family is Chinese and my mom is completely inapt at housework. She seems to think that hiring a caretaker should entail that caretaker taking care of the entire household. This ends up with 80% of the caretakers work being cooking, washing dishes and cleaning the house. This is a very frustrating habit of my mother that I can't break. That's why all of our caretakers end up being people who have basically never seen an iPhone or iPad in their life. They are completely unfamiliar with the necessary tasks of caretaker and also quite often uneducated. It doesn't help that the living costs of the bay area are so high that no one will work for minimum-wage.

    I'm completely at a loss on how to fix this situation. I understand that most of the problems stem from my mother but I'm completely dependent upon her because of my injury. Getting counseling for her will not work because she will be offended at the very idea. I also am unable to support myself monetarily. Is my only option to go to a community home?

    I want to be able to support myself financially but there seems to be nothing I can do.

    Please any advice on how to escape this situation would be extremely welcome.

  2. #2
    Senior Member lynnifer's Avatar
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    Where do your studies sit currently? We have another quadriplegic on this site who works for Nasa. Actually, a lot of the quads here kick my paraplegic arse when it comes to education and employment.

    Securing an income should be job #1. Money buys everything when you're disabled and you'll need a lot of it.
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
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    Quote Originally Posted by lynnifer View Post
    Where do your studies sit currently? We have another quadriplegic on this site who works for Nasa. Actually, a lot of the quads here kick my paraplegic arse when it comes to education and employment.

    Securing an income should be job #1. Money buys everything when you're disabled and you'll need a lot of it.
    I had just finished my general ed before my injury. I don't know how I could possibly advance the aeronautical aspect of my education. I've been brainstorming and I figured programming was the easiest way to secure any income. The biggest problem of this is that IHSS has a very strict limit on income in order to qualify for their services. If I make anything more than $2000 a year then I lose absolutely everything that I currently qualify for which includes the IHSS hours, Medi-Cal and pretty much every single other thing.

  4. #4
    Welcome to CareCure. Certainly there are no easy answers for your issues, but a few thoughts:


    • Can you move out?
    • Do you have an income from SSI or SSDI separate from your parents?
    • I assume you are on both Medi-Cal and Medicare, is that correct?
    • How much PCA care outside of your parents do you get each week? Where did you look for these attendants? Did you make the hiring decision, or your mother? If your parents are being paid for doing your care, and are not doing it, you can report this to your IHSS case manager. I would assume that they are being paid to transfer you to a wheelchair as part of your IHSS approved hours.
    • As the IHSS recipient, you are supposed to be making the decisions about selection of PCAs, not your mother. As you know, IHSS pays a very low wage, so you are not going to find rocket scientists to work for you, but there are PCAs out there who will work for the IHSS wage. You cannot supplement their wage, but you can provide in-kind reimbursement, so for example, you can hire someone to be your PCA and provide them with meals and housing. This might be a solution for moving out. Many people employ health career students (nursing, PT, OT, etc.) who many times would love to have housing as well.
    • Having not sat for such a long time, you will undoubtably not be able to sit up for 10-12 hours right off the bat, so now is the time to work out a way for your parents to transfer you to a chair and start building up sitting time. This allows many people with your level of injury to have attendant care in the morning, and then another attendant come in to put you to bed.
    • In addition to building your up time, in preparation for moving out, look at reorganizing your care needs so that you can get them met with just a few hours of morning and a few hours of evening PCA care. You should not need to have someone with you 24/7.
    • What type of mattress/bed are you on? Have you tried to get a turning mattress so that no one has to turn you all the time?
    • You may need to consider moving out of San Francisco, which as you know is one of the most expensive housing markets in the state. It is likely you would also be able to find PCAs who will work for IHSS wages easier in a cheaper living area.
    • Have you talked to anyone at the Independent Living Center (CIL) in San Francisco about resources for establishing your own household instead of living with your parents?


    I am sure some other members of our forum will chime in with other comments as well.

    (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.

  5. #5
    Have you been in touch with the state DOR (department of rehabilitation) about returning to school?

    If you are able to secure a job, you would then appear to qualify for the Ticket to Work program which would protect your Social Security and Medi-Cal benefits (including IHSS) for a period of up to 2 years, and then would need to get insurance through an employer and private pay for PCA care.

    (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.

  6. #6
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    Quote Originally Posted by SCI-Nurse View Post
    Welcome to CareCure. Certainly there are no easy answers for your issues, but a few thoughts:


    • Can you move out?
    • Do you have an income from SSI or SSDI separate from your parents?
    • I assume you are on both Medi-Cal and Medicare, is that correct?
    • How much PCA care outside of your parents do you get each week? Where did you look for these attendants? Did you make the hiring decision, or your mother? If your parents are being paid for doing your care, and are not doing it, you can report this to your IHSS case manager. I would assume that they are being paid to transfer you to a wheelchair as part of your IHSS approved hours.
    • As the IHSS recipient, you are supposed to be making the decisions about selection of PCAs, not your mother. As you know, IHSS pays a very low wage, so you are not going to find rocket scientists to work for you, but there are PCAs out there who will work for the IHSS wage. You cannot supplement their wage, but you can provide in-kind reimbursement, so for example, you can hire someone to be your PCA and provide them with meals and housing. This might be a solution for moving out. Many people employ health career students (nursing, PT, OT, etc.) who many times would love to have housing as well.
    • Having not sat for such a long time, you will undoubtably not be able to sit up for 10-12 hours right off the bat, so now is the time to work out a way for your parents to transfer you to a chair and start building up sitting time. This allows many people with your level of injury to have attendant care in the morning, and then another attendant come in to put you to bed.
    • In addition to building your up time, in preparation for moving out, look at reorganizing your care needs so that you can get them met with just a few hours of morning and a few hours of evening PCA care. You should not need to have someone with you 24/7.
    • What type of mattress/bed are you on? Have you tried to get a turning mattress so that no one has to turn you all the time?
    • You may need to consider moving out of San Francisco, which as you know is one of the most expensive housing markets in the state. It is likely you would also be able to find PCAs who will work for IHSS wages easier in a cheaper living area.
    • Have you talked to anyone at the Independent Living Center (CIL) in San Francisco about resources for establishing your own household instead of living with your parents?


    I am sure some other members of our forum will chime in with other comments as well.

    (KLD)
    I don't think I can move out in my current situation.

    I have roughly $400 a month from disability. I don't qualify for anything more than that because I'm too young. I haven't had any time to accrue anything.

    Yes I am on both Medi-Cal and Medicare.

    We are currently training a caretaker but like you said, she's not exactly a rocket scientist. It doesn't look like she'll be a long-term solution either. We find these attendance mainly through an ad in the local Chinese newspaper because this is the only type of audience that seems to be open towards working for IHSS wages. My mother makes the hiring decision because the caretaker, typically due to culture shock, is very inept taking care of me and typically just takes care of all household chores so my mother can handle me. I can be transferred to a wheelchair but due to the current scheduling difficulties, we are unable to do this on a regular basis.

    I have posted on craigslist before with a job description but there were no people interested. The San Francisco cost-of-living is far too high for minimum-wage and offering housing is simply not an option because of my mother.

    I have been trying to work out a schedule for myself but once again many difficulties arise primarily due to my parents.

    I wouldn't know where to move to. A community home? I'm not sure where to start.

    I haven't even heard of Independent living Center until just now. I will research more about this option.

    Are there any resources available on this forum that give examples on what a normal quadriplegics daily schedule looks like? Like you said, I'm rather new here.

  7. #7
    If you live right in the city, this is your CIL: http://www.ilrcsf.org/

    If your mother is using your IHSS funds to pay a PCA to be a housekeeper, she is in violation of IHSS regulations, and this could cause you to loose your IHSS all together. You need to take control of the hiring, training, and supervision of the PCAs...not her. This is not going too be easy, but you may need to get your IHSS case manager/social worker to help you with this.

    (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.

  8. #8
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    Quote Originally Posted by SCI-Nurse View Post
    Have you been in touch with the state DOR (department of rehabilitation) about returning to school?

    If you are able to secure a job, you would then appear to qualify for the Ticket to Work program which would protect your Social Security and Medi-Cal benefits (including IHSS) for a period of up to 2 years, and then would need to get insurance through an employer and private pay for PCA care.

    (KLD)
    What can the department of rehabilitation do for me? Also thank you, I didn't know Ticket to Work.

  9. #9
    DOR can help you develop a plan for going back to school and getting education/training so that you can get a job. They most likely would fund your tuition, books, and anything else you needed to be able to go to school (although not usually PCA care or housing).

    http://www.dor.ca.gov/Vocational-Rehabilitation.html


    Here is some information on the Ticket to Work Program:

    https://www.ssa.gov/work/

    (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.

  10. #10
    Very difficult situation for sure. I would suggest you learn more about quadriplegic life, and start with a fellow Californian often called "the grandfather of civil rights for the disabled", the late ED ROBERTS. I am hoping you are able to use a computer to Google his name, or read his biography in Wikipedia under Ed Roberts, disability activist. Another person would be Judith Heumann (see Wikipedia) referred to as the "grandmother of civil rights for disabled" - after getting her teaching certificate she had to sue the New York school system to get a job that they said she couldn't do from a power wheelchair. She has worked at several executive federal governmental positions, traveling to numerous countries in her power wheelchair, with her attendant along.

    Mr. Roberts's quadriplegia was caused in a different way than yours - he was paralyzed by Polio as a child. He fought hard to enter college, and to make living at college accessible. Along the way, other quadriplegics joined the struggle. He later became the State Director for Rehabilitation for the state of California. All of this while laying in a reclined wheelchair, sucking oxygen from a tube held in his mouth. He paved the way for high level quadriplegics who wished to attend college.

    Today U of California at Berkeley is famous for making the campus accessible, dorm living, etc. for disabled students.
    I am a retired Rehabilitation Counselor and suggest you contact the local state rehab. office. You may want to ask for the office manager as you probably would need someone to visit you at home, as it seems you are unable to get out at present. You may have to PUSH for someone to visit you at home. Please insist on a home visit so you can educate yourself on what may be available from them. Perhaps they could help with a computer science tutoring to prepare you for college study later.

    I guess I'm advocating 'start small' by learning about all options available. Hope you stay in touch with this site as there are many folks here who can help you beyond what I have suggested.
    Last edited by triumph; 08-07-2017 at 08:08 AM.

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