The world of SSDI and Long Term Disability is murky. The only way I've been able to figure it out is to live it. I spent much of the past twenty years in project management and it's very frustrating how complicated this system is. It resists understanding because the insurance companies involved don't want anyone to understand the system. Neither do the lawyers. Their incentives are to hide information.
The situation I'm in now has so far resisted understanding without doing. I am currently on SSDI from the government. That's great news. I'm also on LTD from my employer's disability insurance company. The two provide me with 60% of my former salary. I worked for my employer for 14 years and left them on good terms.
Since I went out on disability three years ago, my LTD insurance company has been pushing me to get an evaluation for vocational rehab. They've made it clear they'd be happy if I did any job. I worked as an IT manager. They'd be fine if I worked at Wal-Mart or Taco Bell. If I understand them correctly, they're trying to make me feel so insulted that I'd walk before I took a job like that. Meanwhile, I am a stay at home Dad and don't want to leave my kids for minimum wage.
So we're in a position of trying to out maneuver each other. They've forced my hand and now I'm going to my state's vocational rehab center for the blind and visually impaired. Fine. Here are the question I can't figure out:
1) Can my LTD company make me take a job above the SSDI threshold? Can they make me lose my SSDI?
2)If I get a job that pays below the SSDI cutoff, do they then cut my LTD benefits by the amount I'll make?
3)What level of income (below SSDI threshold) is acceptable? Do I have to max out my earnings?
So far this is clear as mud. And stressful as hell.
Wednesday, October 14, 2015
Tuesday, October 13, 2015
Handicap Bathroom Hell
I'm visually impaired and use a white cane. Disabled bathrooms have been built at great cost and I'm often directed to use them over traditional bathrooms. Probably to help justify their expense. Most handicapped bathrooms are setup for people in wheelchairs, which is fine. It's just that the visually impaired often don't do well in rooms designed for wheelchairs.
Once, during jury duty, I was led to the handicapped bathroom. I walked in and the lights were off. It took me a while to figure out where the switch was located because it had been lowered to the level of a wheelchair. I kept turning around in the dark until I found it. When I got up from the toilet, I stood up straight, like a person who can walk. I gouged my back on a jacket hook that had been placed at low level behind the the toilet.
After finishing, I took a step and bruised my thigh on the corner of a sink, which was much lower than expected. After recovering, I tried to clean my glasses in the automatic faucet but it wouldn't stay on long enough to get my glasses wet. Then I couldn't find the towel dispenser. I left the bathroom disgruntled and in pain. The officer who had accompanied me asked how I liked their new handicapped bathroom. I told him it was "fine."
On another occasion I was in Paris waiting in line for a bathroom and an attendant grabbed me and led me to the front of the line to the handicapped bathroom. I could tell everyone hated me for cutting them. I had been happy waiting in line like everyone else. I did my business and went to flush the toilet. In France, the toilets don't have a consistent flush mechanism position. It can be on top of the toilet, on the side, on the wall. Any wall. I spent more time trying to figure out where the button was than I had taken using the bathroom. The attendant came back to check on me. I was holding up the line. But there was no way I was going to leave the bathroom unflushed. I eventually found the button on the wall beside the toilet.
There's some dark humor about these scenes that even I can appreciate. It's just further proof that a one size does not fit all approach when it comes to disabled bathrooms.
Once, during jury duty, I was led to the handicapped bathroom. I walked in and the lights were off. It took me a while to figure out where the switch was located because it had been lowered to the level of a wheelchair. I kept turning around in the dark until I found it. When I got up from the toilet, I stood up straight, like a person who can walk. I gouged my back on a jacket hook that had been placed at low level behind the the toilet.
After finishing, I took a step and bruised my thigh on the corner of a sink, which was much lower than expected. After recovering, I tried to clean my glasses in the automatic faucet but it wouldn't stay on long enough to get my glasses wet. Then I couldn't find the towel dispenser. I left the bathroom disgruntled and in pain. The officer who had accompanied me asked how I liked their new handicapped bathroom. I told him it was "fine."
On another occasion I was in Paris waiting in line for a bathroom and an attendant grabbed me and led me to the front of the line to the handicapped bathroom. I could tell everyone hated me for cutting them. I had been happy waiting in line like everyone else. I did my business and went to flush the toilet. In France, the toilets don't have a consistent flush mechanism position. It can be on top of the toilet, on the side, on the wall. Any wall. I spent more time trying to figure out where the button was than I had taken using the bathroom. The attendant came back to check on me. I was holding up the line. But there was no way I was going to leave the bathroom unflushed. I eventually found the button on the wall beside the toilet.
There's some dark humor about these scenes that even I can appreciate. It's just further proof that a one size does not fit all approach when it comes to disabled bathrooms.
Thursday, October 8, 2015
Don't Pretend
My disability insurance company called yesterday. Their vocational rehab coordinator wanted to make sure that the State had scheduled me for an evaluation. I told her that they had. She then launched into a long winded, chipper, explanation about how great vocational rehab will be in helping me learn new skills and get a new job.
I told her that I'd been dealing with my disability for sixteen years and I doubted there was adaptive technology that I didn't know about. What I wanted to tell her was, "Stop pretending this is for my benefit! You're forcing me to attend rehab in hopes that you'll move me off your books." That's it. That's all this is about - money.
My insurance company knows that, as a white collar worker for the better part of two decades, I'd rather die than go work a job I consider beneath my dignity. I'm not calling out people who have those jobs, especially not visually impaired and blind people. I just can't do it. My insurance company wants to force me to a decision point where I turn down 23 years of future payouts because I won't humble myself to work at Taco Bell.
In the meantime, SSDI is paying me specifically to be a caretaker to my children. My insurance company wants me to take part of my meager funds to have someone else watch my kids. Money that I won't make up working.
I have no idea how these people sleep at night.
I told her that I'd been dealing with my disability for sixteen years and I doubted there was adaptive technology that I didn't know about. What I wanted to tell her was, "Stop pretending this is for my benefit! You're forcing me to attend rehab in hopes that you'll move me off your books." That's it. That's all this is about - money.
My insurance company knows that, as a white collar worker for the better part of two decades, I'd rather die than go work a job I consider beneath my dignity. I'm not calling out people who have those jobs, especially not visually impaired and blind people. I just can't do it. My insurance company wants to force me to a decision point where I turn down 23 years of future payouts because I won't humble myself to work at Taco Bell.
In the meantime, SSDI is paying me specifically to be a caretaker to my children. My insurance company wants me to take part of my meager funds to have someone else watch my kids. Money that I won't make up working.
I have no idea how these people sleep at night.
Tuesday, October 6, 2015
Canes and Crazies
Back in June, I traveled to Chicago and went to Millennium Park. At one point my friend left me on a sidewalk to seek out a restroom. So I stood there with my cane. Literally hundreds of people passed by. Several of them made comments about me. Hey guys, I'm visually impaired, not deaf. Many even pointed at me like I was a zoo animal. Not really a big deal or anything I'm not used to.
Eventually a group of people came up to me. They were dressed alike in matching t-shirts. I could see that much but not the logo. Their leader, a young guy, asked me a very strange question. "What is going on here?" His tome was accusatory.
His question totally caught me off guard. I've had people get into my face before for "faking being blind," and that's what I thought he was saying. My reply back to him was pretty harsh. "None of your business!"
The guy put his hands up and said something like, "No offense. We're just out there looking for people to pray with. Can we pray with you about your eyes?" I don't care what your religion is, that's just rude. I told them to take a hike.
Eventually a group of people came up to me. They were dressed alike in matching t-shirts. I could see that much but not the logo. Their leader, a young guy, asked me a very strange question. "What is going on here?" His tome was accusatory.
His question totally caught me off guard. I've had people get into my face before for "faking being blind," and that's what I thought he was saying. My reply back to him was pretty harsh. "None of your business!"
The guy put his hands up and said something like, "No offense. We're just out there looking for people to pray with. Can we pray with you about your eyes?" I don't care what your religion is, that's just rude. I told them to take a hike.
Canes and Cruises
Back in July, we went on our first cruise. It departed from Vancouver and went up the Inside Passage and through the panhandle of Alaska. It was amazing and inspiring. For the purposes of this blog, I want to talk about the reactions I got while using my cane on a cruise ship.
I think there were over two thousand passengers on the ship and a couple of other people using canes. I was using my cane on a staircase and passed one of the other cane users. I heard a Father lean over to his daughter and ask in a loud whisper, "why do they think they need those sticks on this ship?" Not sure what he even meant by that. That the ship was a safe environment so canes aren't unnecessary? Or something more judgemental? As rude comments about my cane go, it was pretty minor.
Later on, I was walking through part of the outside deck that doubles as a track. A teenager was jogging towards me and I moved out of her way. Her father chased her down and yelled at her for not looking out for me. It was odd to me because I'd obviously gotten out of her way without issue. I felt bad for her.
In general, the people on the curse ship seemed pretty rude. I'll compare how they treated me using an airport as a control. In a busy airport, people will get out of my way, help if I need it. On the cruise ship, everyone was on vacation and didn't seem to care about politeness. They'd run into me and just keep going. I'd hit them with my cane on accident and they'd get upset. Cruise ships are a tough crowd.
I've said it before, using a cane is an ongoing sociology experiment. Cane users have to put up with people's need to help you and their preconceived ideas. They often don't understand the half-sighted world. As a visually impaired person, I end up having to educate people even though I hate having to do it and don't want that role. Such is the life for the VIP.
I think there were over two thousand passengers on the ship and a couple of other people using canes. I was using my cane on a staircase and passed one of the other cane users. I heard a Father lean over to his daughter and ask in a loud whisper, "why do they think they need those sticks on this ship?" Not sure what he even meant by that. That the ship was a safe environment so canes aren't unnecessary? Or something more judgemental? As rude comments about my cane go, it was pretty minor.
Later on, I was walking through part of the outside deck that doubles as a track. A teenager was jogging towards me and I moved out of her way. Her father chased her down and yelled at her for not looking out for me. It was odd to me because I'd obviously gotten out of her way without issue. I felt bad for her.
In general, the people on the curse ship seemed pretty rude. I'll compare how they treated me using an airport as a control. In a busy airport, people will get out of my way, help if I need it. On the cruise ship, everyone was on vacation and didn't seem to care about politeness. They'd run into me and just keep going. I'd hit them with my cane on accident and they'd get upset. Cruise ships are a tough crowd.
I've said it before, using a cane is an ongoing sociology experiment. Cane users have to put up with people's need to help you and their preconceived ideas. They often don't understand the half-sighted world. As a visually impaired person, I end up having to educate people even though I hate having to do it and don't want that role. Such is the life for the VIP.
Monday, October 5, 2015
Heathrow Cracks Down on Disabled
On a recent trip to France, I had to go through London's Heathrow airport. What a disaster that place is for disabled people. If you don't want help. The way assistance works at airports is that if you want assistance, you request it on your plane ticket. I never do that. During my flight, British Airways radioed Heathrow to tell them I needed assistance. So when I got off a plane they put me on a cart and drove me under the terminals in tunnels that look right out of a Doctor Who episode. The cart certainly made my trip faster. But I didn't actually require it.
After customs, I was led to a disabled waiting room. My next flight had yet to be assigned a gate. My plane ticket was taken by a Heathrow rep and I was told to wait until I could be assisted to my gate. I was really uncomfortable by this point. I hadn't requested help and now my plane ticket had been taken. I wanted to go shopping, get a coffee. It was 1AM to me and I was tired and confused about what was going on. Maybe I could have demanded my ticket back and left. At the time, it felt like I'd been locked up for my own protection. Eventually, one of my brother's texted me and I told him to come fetch me. I felt embarrassed and incapable when my brothers showed up to rescue me.
My treatment reminded me of being a tourist in London a few years ago. I went to the Tower Bridge with my brother. The attendant wouldn't let my brother pay because he was my "caretaker." Which is so insulting. My reaction to her was that no, I'm his caretaker. Oddly, he got in free but I had to pay. There's just something off with how disabled people are treated in the UK.
A week later, I was more prepared for my connecting flight through Heathrow. I learned the magic words to tell British Airways to leave me alone, "I'm traveling with family." So there was no one at the airport prepped to fetch me. I did have to turn down help from all the staff I met, which was annoying. I was able to get on a bus and make my way to Terminal 5, without help, thank you very much. I made my way to security where everything went pear shaped. Security refused to let me into the terminal without an escort. They actually told me that it was against policy for a blind person to walk through the terminal unassisted. That struck me as probably not true but I didn't have a choice. The guard took himself off the line to "assist" me. How many passengers were delayed because he was gone? Who wasn't assisted who needed it more than me?
Over the next hour, the security guard acted as my personal Sherpa. He helped me pick out a toy for my son. We went to the pharmacy. He carried my shopping bags. And I made him follow me into a pub and wait with me while I drank a pint. He was a nice guy and we had a frank conversation about disability. I told him that while in France, or Canada or the US, if I needed help I could request it. If I told the staff that I could do it, I was left alone. At Heathrow, it was assumed that I couldn't do anything and it was hard not to be insulted by that. My minder told me to send Heathrow an email.
After I got home, I sent that email to Heathrow. A representative from BAA plc, the company that runs Heathrow, contacted me. He asked me what the best time to reach me would be. I replied with times and my email was bounced back by BAA's servers has a violation of their email policy. You can't make this stuff up. BAA eventually got a hold of me on the phone. The rep apologized and said that my treatment at Heathrow was a violation of their policy. As I had suspected, the disability policy had been put together with the assistance of blind organizations in the UK. Self determination for the disabled is specific part of their policy that the staff had received training on. As soon as I told them that I wanted to be left alone, that's exactly what they should have done.
I told the rep that if you tell a disabled person that they can't do something because of their disability, that's a form of discrimination. The rep agreed and told me to contact him next time I'm flying through Heathrow. Which doesn't sound like much of a policy. He did say that he'd be contacting the "contractors" in Terminal 5 about my treatment. The management at BAA and the staff are clearly working on different incentives.
There have been several scandals in the past couple of years over the poor treatment of disabled persons at Heathrow. I suspect the staff is more afraid of their line managers seeing a blind person unassisted than they are in following their policy. They were trying to head off scandal by helping me, whether I want help or not. The staff needs to be corrected. The reason why airports rely upon the self reporting system for assistance is that there are almost always more people that need help that staff available. The system breaks down if people who don't want assistance have it forced on them. At the same time, I don't want my story to cause other people not to be helped who need it.
I posted my story to the United Kingdom forum on Reddit. The reaction was typical Reddit in someways. I got a lot of criticism for being a fat, ugly American. For being spoiled and ungrateful. They missed the point that in requesting to be left alone, I'm freeing the staff to help someone else who actually needs it. Also they didn't understand the emotional impact that being treated like a child has on someone with a disability.
After customs, I was led to a disabled waiting room. My next flight had yet to be assigned a gate. My plane ticket was taken by a Heathrow rep and I was told to wait until I could be assisted to my gate. I was really uncomfortable by this point. I hadn't requested help and now my plane ticket had been taken. I wanted to go shopping, get a coffee. It was 1AM to me and I was tired and confused about what was going on. Maybe I could have demanded my ticket back and left. At the time, it felt like I'd been locked up for my own protection. Eventually, one of my brother's texted me and I told him to come fetch me. I felt embarrassed and incapable when my brothers showed up to rescue me.
My treatment reminded me of being a tourist in London a few years ago. I went to the Tower Bridge with my brother. The attendant wouldn't let my brother pay because he was my "caretaker." Which is so insulting. My reaction to her was that no, I'm his caretaker. Oddly, he got in free but I had to pay. There's just something off with how disabled people are treated in the UK.
A week later, I was more prepared for my connecting flight through Heathrow. I learned the magic words to tell British Airways to leave me alone, "I'm traveling with family." So there was no one at the airport prepped to fetch me. I did have to turn down help from all the staff I met, which was annoying. I was able to get on a bus and make my way to Terminal 5, without help, thank you very much. I made my way to security where everything went pear shaped. Security refused to let me into the terminal without an escort. They actually told me that it was against policy for a blind person to walk through the terminal unassisted. That struck me as probably not true but I didn't have a choice. The guard took himself off the line to "assist" me. How many passengers were delayed because he was gone? Who wasn't assisted who needed it more than me?
Over the next hour, the security guard acted as my personal Sherpa. He helped me pick out a toy for my son. We went to the pharmacy. He carried my shopping bags. And I made him follow me into a pub and wait with me while I drank a pint. He was a nice guy and we had a frank conversation about disability. I told him that while in France, or Canada or the US, if I needed help I could request it. If I told the staff that I could do it, I was left alone. At Heathrow, it was assumed that I couldn't do anything and it was hard not to be insulted by that. My minder told me to send Heathrow an email.
After I got home, I sent that email to Heathrow. A representative from BAA plc, the company that runs Heathrow, contacted me. He asked me what the best time to reach me would be. I replied with times and my email was bounced back by BAA's servers has a violation of their email policy. You can't make this stuff up. BAA eventually got a hold of me on the phone. The rep apologized and said that my treatment at Heathrow was a violation of their policy. As I had suspected, the disability policy had been put together with the assistance of blind organizations in the UK. Self determination for the disabled is specific part of their policy that the staff had received training on. As soon as I told them that I wanted to be left alone, that's exactly what they should have done.
I told the rep that if you tell a disabled person that they can't do something because of their disability, that's a form of discrimination. The rep agreed and told me to contact him next time I'm flying through Heathrow. Which doesn't sound like much of a policy. He did say that he'd be contacting the "contractors" in Terminal 5 about my treatment. The management at BAA and the staff are clearly working on different incentives.
There have been several scandals in the past couple of years over the poor treatment of disabled persons at Heathrow. I suspect the staff is more afraid of their line managers seeing a blind person unassisted than they are in following their policy. They were trying to head off scandal by helping me, whether I want help or not. The staff needs to be corrected. The reason why airports rely upon the self reporting system for assistance is that there are almost always more people that need help that staff available. The system breaks down if people who don't want assistance have it forced on them. At the same time, I don't want my story to cause other people not to be helped who need it.
I posted my story to the United Kingdom forum on Reddit. The reaction was typical Reddit in someways. I got a lot of criticism for being a fat, ugly American. For being spoiled and ungrateful. They missed the point that in requesting to be left alone, I'm freeing the staff to help someone else who actually needs it. Also they didn't understand the emotional impact that being treated like a child has on someone with a disability.
Macular Edema
In July I was diagnosed with macular edema. It's a rare side effect of RP. Macular edema was causing my remaining central vision to get blurry. It's like having RP and macular degeneration at the same time. From a personal standpoint it made my vision much more sensitive to bright lights and unpredictable.
My doctor talked to me about the standard treatment - a shot of cortisone to the back of the eye. The side effects of this treatment include a 30% chance of developing glaucoma. So I have an eye disease, RP, that causes blindness. RP has caused a condition, macular edema, which can cause blindness. Macular edema has a treatment which can cause glaucoma, which can cause blindness. Also, blindness.
So we decided not to do the shot just yet. Instead we started an off label treatment; cortisone eye drops. The drops hurt a lot and I wasn't great at taking them because of all the travel I've been up to. Fast forward two months and my vision has improved. I'm not as sensitive to bright lights and I've regained a line of acuity on the eye chart. Great news. So I'm going to do another two month round of the painfully suckers. I hope we can wipe macular edema out this time.
So I'm left with something I almost never get. Good news from the eye doctor.
My doctor talked to me about the standard treatment - a shot of cortisone to the back of the eye. The side effects of this treatment include a 30% chance of developing glaucoma. So I have an eye disease, RP, that causes blindness. RP has caused a condition, macular edema, which can cause blindness. Macular edema has a treatment which can cause glaucoma, which can cause blindness. Also, blindness.
So we decided not to do the shot just yet. Instead we started an off label treatment; cortisone eye drops. The drops hurt a lot and I wasn't great at taking them because of all the travel I've been up to. Fast forward two months and my vision has improved. I'm not as sensitive to bright lights and I've regained a line of acuity on the eye chart. Great news. So I'm going to do another two month round of the painfully suckers. I hope we can wipe macular edema out this time.
So I'm left with something I almost never get. Good news from the eye doctor.
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