The Adventures of the Newly Blind/Low Vision/Visually Impaired Girl (BLOVI)
I know that you can’t always get what you want, but sometimes you can’t even get what you need. This week I am focusing on the fact that the disabled have to fight to get services and supports that are supposed to be available to them. But first...
My WTF of the week is why in the heck am I in my house so much. Not being able to drive totally stinks, but it is more than that. Being in the house promotes being in your head, as I sometimes tell my clients. It is hard to carpe diem without a car. I like to do and act to enjoy the day when I can. I like to do things like walk/run, swim, hike, bike and kayak. I can do all these things, just not alone. Although I should be able to swim laps because I have those lane buoys as guides and I will know I am at the end when I bump my head .I can see the ground so hiking should not be a problem and most kayaks are bright and the river is wide so I can follow someone. I wonder if people are afraid to do these things with me because it seems risky. I promise to draft a waiver of liability so that if I get hurt or lost it is my bad. I am also thinking of making me a bright, possibly flashing, t-shirt that says “Blind-Get Out of My Way”, and people with me will have shirts that say “I’m with the BLOVI Girl” with a finger pointing in my direction and the definition of BLOVI on the back. I also promise to finally get my handy hang tag so people can park in the handy spaces when I am with them—a huge incentive. Plus, I already knocked out my eyes with seemingly innocuous exercise bands, so everything else should be totally safe.
This week I can’t get enough of the fact that I realized that I could see the controls on my iPod when it was docked and I was controlling it through my system and seeing it on my 42 inch TV. Why did this not come to me sooner? I downloaded 8 CD’s(The Black Keys, Local Natives, Broken Social Scene, The National, etc,) right before my accident and now I finally get to enjoy them. Once again I get to have dance till you drop nights (MIA, Madonna, LCD Soundsystem, Thievery Corporation, The Stone Roses, and New Order) which culminates with The Smith’s “How Soon Is Now”. I also get to have cry fest evenings which include lots of Cat Power (e.g. Good Woman, In This Hole), Beck’s “Sea Change”, and Jeff Buckley’s version of Leonard Cohen’s “Hallelujah”. I dare you not to cry.
Now to my rant about how the disabled are treated. After the accident I quickly realized that getting what I needed would take every ounce of fight I had. When I was admitted to the hospital I was uninsured, so they sent the financial counselor in. I had been dropped from BCBS state in June, but never got a letter about getting Cobra. She told me that if I was dropped as an ex-spouse that I was not eligible for Cobra. So, I called someone at BCBS who told me she was wrong and that I had a 60 day window. Turns out that I had 3 days left to apply and have the application approved. With the help of others we did it. Ends up the COBRA letter was sent to my ex right before the accident and if I would have listened to the financial person at Palmetto Richland , I would be uninsured right now and responsible for over $35,000 in medical bills. Lesson—always get a second opinion.
I also was shocked to learn that I could not get out of my car lease, even though I can no longer drive. Turns out that Volkswagen has no policy that if you become disabled you can turn in your lease without penalty. So, I am stuck with a car payment and I have to keep it insured because it is a lease. When I see those punch-bug commercials I really do want to punch someone at VW. I keep calling and asking to speak to a higher level manager so I can re-tell my sad story. At this point I am faxing in proof I am blind so they can consider their options. I guess they really want me to drive. So, if you see a charcoal gray 2009 Jetta Wagon around central Columbia you may want to get out of the way, or stop me from attempting to drive it by buying it. Lesson—even if there is no policy, someone can make a decision in your favor.
And a big thanks to Northwestern Mutual Finance. For 10 years I have been paying for a long term disability policy. I clearly am disabled and I meet all the requirements of a category called presumptive disability which includes legal blindness in both eyes that is irreversible. My particular “this can not be happening” moment is when the medical advisor from the company decided that he knew more than the experts at the Duke Eye Center and decided that my damage was not permanent and that they were going to wait a year to see if things changed. Then my case manager actually said that he was being cautious because once they made the determination that they had “bought the farm” on my case. After the use of some choice words including lawyer and complaint, my case is now being reviewed by a third party medical person, who can hopefully read a medical report. Lesson—keep fighting for what is right.
Here is the biggest OMG. Right after the accident, I was ordered to appear in an emergency court hearing because my ex wanted a change in custody on the basis I could no longer care for myself or my daughter. You know, because legally blind people can’t raise children. Still in the middle of this, so can’t say much, check back later for lessons learned.
Another shocker is that the one thing that has actually come through is SSDI. Yes, it took a while to get an appointment and when I tried to do the forms online it inexplicably locked me out when we were over halfway done. I have to wait 5 months but they actually believed I was blind. And come to find out that I am just getting back the money I have been paying into Social Security for 26 years. I never expected, as a Generation X’er to actually see any of this money, so this rocks. Lesson—expect to be pleasantly surprised sometimes.
Lots of other things have happened. What I know is that it takes determination to work the system. Because they are counting on you to give up. I am lucky because I know people, am articulate, and persistent. It should not be this hard and I feel for all those who are not as lucky as I am. We need to advocate for those who can not do so for themselves. So pick a group and do it. Be an advocate.
Coming next week…The BLOVI Girl’s Night on the Town.
Keep moving forward,
Beth “BLOVI” Medlock
I know that you can’t always get what you want, but sometimes you can’t even get what you need. This week I am focusing on the fact that the disabled have to fight to get services and supports that are supposed to be available to them. But first...
My WTF of the week is why in the heck am I in my house so much. Not being able to drive totally stinks, but it is more than that. Being in the house promotes being in your head, as I sometimes tell my clients. It is hard to carpe diem without a car. I like to do and act to enjoy the day when I can. I like to do things like walk/run, swim, hike, bike and kayak. I can do all these things, just not alone. Although I should be able to swim laps because I have those lane buoys as guides and I will know I am at the end when I bump my head .I can see the ground so hiking should not be a problem and most kayaks are bright and the river is wide so I can follow someone. I wonder if people are afraid to do these things with me because it seems risky. I promise to draft a waiver of liability so that if I get hurt or lost it is my bad. I am also thinking of making me a bright, possibly flashing, t-shirt that says “Blind-Get Out of My Way”, and people with me will have shirts that say “I’m with the BLOVI Girl” with a finger pointing in my direction and the definition of BLOVI on the back. I also promise to finally get my handy hang tag so people can park in the handy spaces when I am with them—a huge incentive. Plus, I already knocked out my eyes with seemingly innocuous exercise bands, so everything else should be totally safe.
This week I can’t get enough of the fact that I realized that I could see the controls on my iPod when it was docked and I was controlling it through my system and seeing it on my 42 inch TV. Why did this not come to me sooner? I downloaded 8 CD’s(The Black Keys, Local Natives, Broken Social Scene, The National, etc,) right before my accident and now I finally get to enjoy them. Once again I get to have dance till you drop nights (MIA, Madonna, LCD Soundsystem, Thievery Corporation, The Stone Roses, and New Order) which culminates with The Smith’s “How Soon Is Now”. I also get to have cry fest evenings which include lots of Cat Power (e.g. Good Woman, In This Hole), Beck’s “Sea Change”, and Jeff Buckley’s version of Leonard Cohen’s “Hallelujah”. I dare you not to cry.
Now to my rant about how the disabled are treated. After the accident I quickly realized that getting what I needed would take every ounce of fight I had. When I was admitted to the hospital I was uninsured, so they sent the financial counselor in. I had been dropped from BCBS state in June, but never got a letter about getting Cobra. She told me that if I was dropped as an ex-spouse that I was not eligible for Cobra. So, I called someone at BCBS who told me she was wrong and that I had a 60 day window. Turns out that I had 3 days left to apply and have the application approved. With the help of others we did it. Ends up the COBRA letter was sent to my ex right before the accident and if I would have listened to the financial person at Palmetto Richland , I would be uninsured right now and responsible for over $35,000 in medical bills. Lesson—always get a second opinion.
I also was shocked to learn that I could not get out of my car lease, even though I can no longer drive. Turns out that Volkswagen has no policy that if you become disabled you can turn in your lease without penalty. So, I am stuck with a car payment and I have to keep it insured because it is a lease. When I see those punch-bug commercials I really do want to punch someone at VW. I keep calling and asking to speak to a higher level manager so I can re-tell my sad story. At this point I am faxing in proof I am blind so they can consider their options. I guess they really want me to drive. So, if you see a charcoal gray 2009 Jetta Wagon around central Columbia you may want to get out of the way, or stop me from attempting to drive it by buying it. Lesson—even if there is no policy, someone can make a decision in your favor.
And a big thanks to Northwestern Mutual Finance. For 10 years I have been paying for a long term disability policy. I clearly am disabled and I meet all the requirements of a category called presumptive disability which includes legal blindness in both eyes that is irreversible. My particular “this can not be happening” moment is when the medical advisor from the company decided that he knew more than the experts at the Duke Eye Center and decided that my damage was not permanent and that they were going to wait a year to see if things changed. Then my case manager actually said that he was being cautious because once they made the determination that they had “bought the farm” on my case. After the use of some choice words including lawyer and complaint, my case is now being reviewed by a third party medical person, who can hopefully read a medical report. Lesson—keep fighting for what is right.
Here is the biggest OMG. Right after the accident, I was ordered to appear in an emergency court hearing because my ex wanted a change in custody on the basis I could no longer care for myself or my daughter. You know, because legally blind people can’t raise children. Still in the middle of this, so can’t say much, check back later for lessons learned.
Another shocker is that the one thing that has actually come through is SSDI. Yes, it took a while to get an appointment and when I tried to do the forms online it inexplicably locked me out when we were over halfway done. I have to wait 5 months but they actually believed I was blind. And come to find out that I am just getting back the money I have been paying into Social Security for 26 years. I never expected, as a Generation X’er to actually see any of this money, so this rocks. Lesson—expect to be pleasantly surprised sometimes.
Lots of other things have happened. What I know is that it takes determination to work the system. Because they are counting on you to give up. I am lucky because I know people, am articulate, and persistent. It should not be this hard and I feel for all those who are not as lucky as I am. We need to advocate for those who can not do so for themselves. So pick a group and do it. Be an advocate.
Coming next week…The BLOVI Girl’s Night on the Town.
Keep moving forward,
Beth “BLOVI” Medlock
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