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Disability

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Hello all,

My DW has reached the point they don't want her to work much as a substitute teacher. She is really out of it the days she does work. I mentioned applying for disability and she is considering it. What was the tipping point where your PWP applied for disability? How hard was it to apply and what all did you have to do to document the disability? I am looking at the SSI website, I just need some pointers as to best how to proceed.

 

Thanks,

 

Coach T

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My husband did not apply for disability, but friends that have say it is essential to hire a good disability lawyer.  There are too many "mother may I" requirements to traverse it on your own.

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My husband applied for disability when his doctors told him he needed to quit work. He took a short term disability (was supposed to be five weeks and turned into five months) where he tried new medications, completed "Big Therapy", completed "Loud" Therapy, and then went back to work three days a week but symptoms got so bad he wasn't doing well at work and could barely function when he wasn't working. His disability applications went smoothly (his company's insurance carrier, a private policy we'd had for a long time, and then Social Security). Some friends who had been through the process helped us a lot (keep good records, be consistent in your answers, and follow up). We did not use a lawyer. We had consulted an employment lawyer for another reason who gave us excellent advice on being sure we had the full plan description from the company's carrier. His company did provide a consultant (Advantage 2000) to help with the Social Security application as they could decrease his benefits as soon as he qualified for Social Security. One of his doctor's gave us the best advice, he said that when they asked why he couldn't work to say "My doctor says I cannot work". He said to simple repeat that again and again, if needed. Another doctor suggested we use these words when talking to the interviewers who don't now anything about PD, "Parkinson's is a progressive neurological disorder, there is no cure". Because he had the "trial to work" after the short term disability, I think it helped his applications go through easily. The fact the school does not feel she can continue to substitute teach probably will be an important factor. We would write out talking points before each phone interview and return to those pretty much in answering most any question. I think for us, the hardest part was focusing on what he couldn't do because we always focus on what he can do. We would sort of change directions when filling out the forms and going through the interviews and then switch back to our more positive view. We learned that his MDS had documented at the very first visit, seven years earlier, concerns about him being able to continue employment (soft voice, etc.) and in subsequent visit notes as well. That probably helped too. We did find the doctor's concerns aligned more with the employer's possible concerns (ability to walk and potential for falling) than the things that were more troubling to us (like fatigue) so those were the ones identified in the applications. Outlining job duties and how PD interfered was important too. Good luck. 

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None, she continues to work, but a lot less. She started Rock Steady boxing last fall and did really improve. Her programming changes also helped. The gym owners took a week off before Christmas and she really declined and was awful for the month of January. She was forgetting to flush the toilet, for example, which she has never done. She can't set the table completely for example. Her memory or her ability to stay focused is really off. She had a neurologist's appointment the first of last month and she walked the best, talked the best, and made sense compared to just the day before. I emailed the neurologist about whether it was Lewey Body Dementia and they didn't think so. Said there are meds that can be given, but I know my DW will not think anything is wrong. Also, most of the meds are anticholinergics, which caused many problems when she was on similar things in the past. She is still in her own little world. Also, she said she is a people person and needs to be around people. She isn't really a people person, she is a doing person, she constantly needs to be doing something and the thinks she likes to do involve people. Just last week it really hit me that we are more like roommates than a married couple. She has changed so much, PD has brought out much of the worst parts of her personality and she can't recognize it. There is much more, but that is all for today.  Thanks for asking.

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Fortunately for us my husband made it almost to full SS time before  he had to leave work. So he did not have to apply for SSDI. He just started collecting his regular SS and I then collected spousal benefits  against his record.

However, applying for benefits is not hard it is the proving with complete medical history that is difficult.

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My DW is working a little bit yet, but her ego is such that claiming disability probably won't happen for a while. Her voice is so soft I don't know how she will be able to do much, let alone how bad her executive function is getting. I don't think proving it will be a problem.

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There is an earnings limit so if she is only working a little, she could go ahead with the disability application. The limit this year is $17,040 and for every $2 over the limit, $1 is withheld from benefits. https://www.ssa.gov/pubs/EN-05-10003.pdf

The advantage is that if approved for disability, she will be eligible for Medicare after receiving disability benefits for two years. I'm assuming she is not of Medicare age yet so can make a real difference in costs for medical care. For those who quit working completely, the two year wait for Medicare can bankrupt a family. It seems it would be better to start the application process and see where it goes.

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Thanks Golden,

I will look into it. She is making far less than that. I didn't even know it was possible.

Coach T

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One more thing . . . there are some work requirements (you have to have worked a certain amount over the past so many years). I don't recall what those numbers are as my husband had been working full time. It is another reason to go ahead with a disability application. I've heard of people who stopped working due to PD but didn't file for disability right away (didn't need, thought they'd go back to work, etc.) and then didn't meet the work requirements when they did apply. Something to check. 

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PD is a (blue book) condition for SSDI and SSI which is completely different programs. I learned the hard way that not enough work credits within the previous 5 years will prevent you from drawing SSDI regardless of how much you paid in for the years before the 5 year window. 

SSI was approved the first time I applied. I included copies of medical reports that showed the required symptoms of PD to be automatically approved by SS. I also answered the questions about how PD impacted me. Less than two weeks I received the call telling me that I was approved for SSI. During the two weeks the VA approved Non Service Connected VA PENSION, which is just enough to make one ineligible for SSI but NSC VA PENSION pays twice the amount of SSI. 

I was approved for Service Connected Disability for Parkinson's Disease a few months later and 3 years to the day from the day I filed my original claim.

I will find the link for the SS automatically approved criteria and posthttps://www.apdaparkinson.org/resources-support/living-with-parkinsons-disease/disability/

 

This discusses it some I hope it helps somehow.

Edited by Gulfvet
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We had a talk a week ago and she agreed to apply for disability. She is in her own little world, that's for sure. She doesn't get that no one in the family will ride with her driving because we don't think she is safe. She told me she could have driven on our vacation, right her reactions would do well at 75-80 miles per hour. Bradyphrenia has made its appearance over the last couple of months. She has done a different speech therapy, the Parkinson's Project. I can 't remember the name. She was doing her voice exercises in the car on our vacation. It was really painful to listen as it was so slow and she couldn't even say the words. Suddenly she took out her DBS controller and she could talk. I told her to leave it on that setting. Later I asked her, how often do you change the setting? She said she changed it every day like they told her too. Wow, not what was said. She was supposed to give the first setting two to three days for her brain to stabilize and then try the other setting the same way. If one was better for walking or one for speech use that setting when needed. Never trust your PWP to remember what was said at an appointment. She has had a steady decline in ability since the first of the year. Previously it would be a change, then steady for a while, then a change, then steady again. I told someone that when we were traveling it was like having a combination of a little kid and an old person. She is 53, so she shouldn't fit either category. Sigh.

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Not easy . . . good luck with the disability application. Because she is under 55, they may look at "unable to do any job". My husband was over 55 so they only considered whether he could continue in his past profession. They did offer "re-training". He politely listened to the young man who called to offer the Social Security services but declined. He had already completed a "Trial to Work" while working part time the year before he was approved for full-time disability. 

LOL - Do you need to take control of the DBS controller? Might be like watching TV in some families. 

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Golden,

I think if she switched the controller to where she couldn't talk and had an interview she would be approved with flying colors. 😀

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