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Thread: Inadequate Physical Therapy

  1. #11
    Senior Member
    Join Date
    May 2010
    Location
    Chesapeake, VA
    Posts
    589
    The problem with Medicaid is that the state insists that the benefits be spent in state, regardless of the required level of care.

    Ryan was fortunate in that he was covered by group health insurance by his dad's employer. I still had to fight to get him the care we all needed. At the time he was discharged from the trauma hospital, there is no was he could go home, forget have any level of independence. I fought through several levels of management with the logic that they could either pay for the treatment he needed of they could pay for him to spend more time in the trauma hospital until he could be transferred to a nursing home. In addition, his drain on the medical system would be considerable for the rest of his life. The problem is that the insurance companies are very short sighted, driven only by current quarter's profits. They actually are counting on the patient becoming someone else's problem as soon as possible. Ryan was not covered at all by Medicaid until the day after he was discharged from Shepherd (until he returned to VA). Insurance does not care if you get better or if you die, just do it in a timely manner.

    Our current health insurance (husband changed jobs) does not cover Shepherd in their network. We chose that plan however, because there are not limits on medically necessary therapy and no limits on DME. Luckily, Ryan's doctor has no problem helping with the fight that his therapy is medically necessary. Ryan knows he cannot go back to Shepherd until Medicare kicks in this September and is working toward that goal. At least, he is not limited to a set number of therapy visits as he would have been had we chosen the plan that has Shepherd in network. He has been able to return to school (though on a part time basis) and plans to become a contributing, tax paying member of society. He managed to complete his high school requirements while at Shepherd and has taken classes at the local community college with the plan to transfer to UVA when he is ready. He will get there and the work he is putting in now will help ensure his success. He know what hard work can do for you, given the proper tools.

    Contact the Boston Center as soon as possible and see what you have to do to get there. While Medicare has annual limits, you get that limit every year and Shepherd will work with you and send you home with goals and work you can do on you own if necessary.

    Insurance may suck but not having it sucks even more.--eak
    Elizabeth A. Kephart, PHR
    mom/caregiver to Ryan-age 21
    Incomplete C-2 with TBI since 3/09

  2. #12
    Thank you for your insights. I am incredibly grateful to have insurance at all, as I had always worked two jobs prior to my injury and had to hope that I'd never get sick, but it is certainly not hard to see the immense problems that exist within the system. It's heartening to know that your son is getting the care he deserves and that he has such drive and determination.

  3. #13
    Have you been in touch with your state vocational rehab agency? The quality of the agencies varies from state to state, but their mission is to help people with disabilities return to work. You sound like the perfect candidate. They can provide training/education, possible support for a vehicle, possibly supplemental therapy, and vocational counseling. I would encourage you to get in touch as soon as you can because they may able to direct you to other resources.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  4. #14
    Quote Originally Posted by SCIfor55yrs. View Post
    Have you been in touch with your state vocational rehab agency? The quality of the agencies varies from state to state, but their mission is to help people with disabilities return to work. You sound like the perfect candidate. They can provide training/education, possible support for a vehicle, possibly supplemental therapy, and vocational counseling. I would encourage you to get in touch as soon as you can because they may able to direct you to other resources.
    Yes, I contacted them within the first year of my injury. The office is located over an hour away and when I told her I wasn't sure how or when I would be able to get there, she said there was little she could do to help me if I didn't have a vehicle and didn't drive. When I asked to speak to someone else, I was told she was the only person who handled "such cases". I then called the organization that helped me get my wheelchair, and who actually had directed me toward voc rehab. The man I spoke with was very kind and said he had a similar experience with the same woman I spoke to. She made him feel as though he couldn't possibly have obtained a master's in english, being a quad, and asked to see his diploma on the spot. He offered me another phone number to try but admitted it might not be of help, and rightfully so. It was no longer in service. Mind you, this was almost three years ago and I have not been in touch with voc rehab since that time, so things very well may have changed. It certainly can't hurt to make a phone call.

  5. #15
    I thought things were bad in South Carolina, but it seems that Maine really sucks when it comes to human services. I will give this more thought. Hang in there.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  6. #16
    Quote Originally Posted by SCIfor55yrs. View Post
    I thought things were bad in South Carolina, but it seems that Maine really sucks when it comes to human services. I will give this more thought. Hang in there.
    Well, yes and no. I was infuriated recently when I learned of woman I know who got speech therapy for her two year old son paid for by the state. Mind you, this woman has never worked a single day in her life and inherited millions. She owns a house in Maine, Hawaii, California and Vermont and is in the process of purchasing another Maine house. All of these assets are in her mother's name, whom she lives with, and this woman obtained state aid by claiming to be a single mother, which technically she is, although she has nannies that raise her two children. I know what it is to work hard and not have health care, and I feel for the taxpayers who cannot afford to see a doctor themselves and have to pay for this woman's child. It's upsetting to think how much abuse goes on, while people who are truly deserving and in need of care go without. But I digress...

    Thank you for being so kind and taking the time to offer suggestions.

  7. #17
    Here are some thoughts:
    1. You need to be assertive in dealing with agencies. Maybe a little anger will get your adrenalin flowing. You should be angry. You have been robbed of three years of living. You probably could have been launched on a satisfying future within a year following your injury if you had had decent rehab.
    2. If your urologist is knowledgeable about SCI, she can be a great friend and advocate. For better or worse, physicians are more likely to be listened to than disabled people.
    3. Develop a list of resources in Maine. I suggest you begin by calling voc rehab again and tell them that you are seeking help that will return you to work. As them if they have field counselors who could make a home visit. South Carolina is an equally rural poor state and they do that here. If they cannot do that, ask them exactly what they do do.

    Check out this disability organization and see if they have any suggestions: http://www.abilitymaine.org/aboutus/staff.html

    Also call these two organizations, explain your situation, and inquire if they can offer help.

    Maine Independent Living Council - http://www.mainesilc.org/

    Maine Disability Rights Center - http://www.drcme.org/ One of the things you might ask is if there is a way to appeal Mainecare’s rejection of rehab services for you.

    Here is a site that can direct you to other possible related services in Maine.
    http://www.thecommunityconnector.org...ility-services

    Are there any other disability organizations nearby, such as United Cerebral Palsy, or Easter Seals clinics? They may not be able to help directly you but they can help you find useful services.

    If you do a thorough assessment of available services in Maine and cannot find what you need to get your life moving again, you may be faced with deciding to continue the to struggle there or to relocate someplace where there are better supports. I do not know why you are in Maine and what ties you have. I do recall another CC member in the last 2 years or so who was considering leaving, although I think his major objective was to find a more hospitable climate.

    In my opinion, even 3-4 weeks of good rehab to polish up the skills you have learned on your own, learn some new ones, and to learn about SCI and good care would be extremely beneficial. You might even be able to self-cath. Having the right wheelchair and cushion are critical. You have the potential to be completely independent in self-care, drive, work, maybe find a guy and become a mom if that is in your life plan. If you have looked around the forums here, I am sure you know that we are doing those things.

    Good luck. Treat this as if it is your job. Get back to us, as needed.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  8. #18
    I have zero desire to marry and even less desire to have children, but a career and more independence would be nice. If I could manage that here in Maine I'd like to, because I love the state itself... it's just not the most readily accessible, and I would relocate if need be as long as I was still near the coast. Thank you so much for your support and for taking the time to offer suggestions and resources - much appreciated!

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