The American Disability System - Cure Parkinson's

Cure Parkinson's

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The American Disability System

pdpatient
pdpatient

This post talks about the American Disability System requiring a massive overhaul due to Covid-19 long.

If and when it happens, I hope that PwP's in America fight for recognition of Parkinson's limitations and give us easier access.

marketplace.org/2021/04/22/...

28 Replies

Are you on disability? I’m getting ready to apply and am prepared to be denied.

pdpatient
pdpatient in reply to Juliegrace

No, unfortunately not. I still have to work to put my daughter through college. I don't think I will be ready for some time. They have very difficult and stringent rules for qualification and denials are usual all the time. It wouldn't be enough to maintain my current expenses.

I only have a speech problem when on medication and my MDS says that he can fix that with DBS. Ar some point I will bite the bullet. He tells me that I can go for another 15 years easy on the workforce with DBS, probably even 20.

The newer versions are starting to get Artificial intelligence software and that's going to be a a game changer!

RKM

laglag
laglag in reply to Juliegrace

Juliegrace, you may not get denied. I applied 6 yrs ago at the age of 57 and got approved 1st try. Pointers I received from a social worker:

1) Complete forms & have someone help you. The form asks if you had assistance completing the form. He said it would indicate you need assistance.

2) You need to be on disability or your doctor will say you won't be able to work for a year.

3) When completing the form, describe your worst day. Be detailed because some of the approvers may not know much about Parkinson's symptoms. Don't lie just describe your worst day.

4) Let them know there is no cure and your symptoms WILL gradually get worse.

5) Have your nuerologist write a letter and put it in your medical file, that the government will ask for stating you are not a good candidate for vocational rehabilitation.

That's the only things I can think of right now. If I think of anything else I'll let you know.

laglag 🥊

pdpatient
pdpatient in reply to laglag

@laglag, thank you for sharing. I will keep it in mind.

RKM

cclemonade
cclemonade in reply to laglag

Laglag, in hindsight are you glad you kept working? I’m contemplating what to do. My career doesn’t scale down to part time so it’s all or nothing unless I start something entirely different part time. I think that’s all I can handle is part time. I don’t know how you did it for 10 years. My exercising is taking 1 1/2 hours a day and I’m working up to 2 hours a day. Anyways, in your experience, was continuing on what you’d recommend?

laglag
laglag in reply to cclemonade

I'm glad I kept working for the most part, but when I look back I wish I would have retired a little sooner. After retiring I had more time to take care of myself. It reduced a lot of stress and I could exercise more. My neurologist agreed it was the best thing. The neurologist doesn't make the final decision, Social Security does. More than likely you ' ll know when it's time.

cclemonade
cclemonade in reply to laglag

Thank you Laglag. Looks like this is it for me, no more career. Now I'm researching how to keep my brain challenged and active to keep what neurons are left up there firing. I've resumed learning French via Duo Lingo. I highly recommend it. If you have any brain exercise recommendations as I know you are very responsible and proactive, please let me know. Maybe I should post about that.

laglag
laglag in reply to cclemonade

This is the government website that you would use to see if you are eligible for disability. There are 5 questions you need to answer. Look at the section "How We Decide if you are Disabled".

Juliegrace
Juliegrace in reply to laglag

I’m confused about #2. It’s sort of a contradiction.

kevowpd
kevowpd in reply to Juliegrace

What is 'disability'? Does the gov pay you? How is the amount determined?

Juliegrace
Juliegrace in reply to kevowpd

The government pays an amount that is based on Social Security which is not available until retirement age.

laglag
laglag in reply to kevowpd

The amount you will get is the full amount you would get at retirement age. So if you retirement amount is $2,000 a month and your retirement age is 67 than you would start getting the $2k at age 55. In my opinion, it helps to be closer to the full retirement age, but definitely not impossible.

laglag
laglag in reply to Juliegrace

Sorry the wording was not so good. If you're currently on disability and your doctor states that you will not be able to go back to work then you should be eligible. I'll try to find the documentation & get back to you.

Juliegrace
Juliegrace in reply to laglag

I’m not currently on disability. I’m officially stopping work on May 1, but I’m afraid it’s going to be complicated because I’ve been working for my husband’s (and my) company for the past 15 years.

laglag
laglag in reply to Juliegrace

I believe there are a few rules that are different for self employed, but I'm not sure what they are. Good luck. It's not an easy process but it's worth it.

laglag
laglag in reply to Juliegrace

This is a checklist of things you will need to apply. It's better to apply online rather than in person.

ssa.gov/hlp/radr/10/ovw001-...

Go to section "Information needed to apply" to get a

summary of what is needed and this website also mentions self employment.

ssa.gov/hlp/radr/10/ovw001-...

Juliegrace
Juliegrace in reply to laglag

Thank you!

Kwinholt
Kwinholt in reply to Juliegrace

Julie grace, I am on SS disability now. Was denied the first time and resubmitted and also hired an attorney. I still had to jump through a lot of hoops. My dr filled out paperwork and they require you to have been off of work for almost a year . They made me go through a psych evaluation which made me feel stupid. I’m so glad my husband was with me. I asked the psychologist if she was educated in Parkinson and she said no. I politely said, then how can you evaluate me? If I denied the evaluation, I would have been denied the disability. The system is messed up. Good luck and don’t take no for answer. Don’t give up. Karen

Manypony
Manypony in reply to Juliegrace

I got denied, it’s all I can do to imagine reapplying ☹️

laglag
laglag in reply to Manypony

If you can find a social worker, they might be able to help. Good luck! It's a gruelling process but it's worth it. Check with your neurologist.

pdpatient
pdpatient in reply to laglag

@laglag, a few questions :

1. Do you get the entire projected retirement amount,

2. Are you then eligible for Medicare?

3. Does that preclude you from any future work in just your field of experience or disqualifies you from all work forever?

Thanks in advance.

RKM

Kwinholt
Kwinholt in reply to pdpatient

Pd, in California when are approved for Social Security disability after 24 months of receiving it you are required to sign up for Medicare. I will be 58 this year . My SS disability is a little more then my regular social security would be at 62. I just filed my retirement papers with my work as well. My understanding if your approved for SS disability, it’s bc you can no longer do your or a job. I don’t believe you are supposed to seek other employment. They don’t make it an easy process. Karen

pdpatient
pdpatient in reply to Kwinholt

@kwinholt / Karen thanks for the quick response.

You are well aware of how hard it is to make ends meet in otherwise sunny California ☀️😎. In fact the State of California does a lot better and pays a decent living payout under the temporary / short term system.

I have no choice but to work. Unless I move in with my good brother in the UK and reconsider my options 🤔 Nah 👎

California it is. I hear there's still gold in them mountains😂.

RKM

Kwinholt
Kwinholt in reply to pdpatient

Pd, Unfortunately I worked for a school district that didn’t pay into state disability so I paid to a private company for over 23 years to have disability insurance and only used it this one time and they gave me crap from day 1 as well. And when I applied for SS disability they, American Fidelity is the company, told me if I’m approved I will owe them money back. WTH. You pay to have coverage, then penalized when you use it. Crazy! Karen

pdpatient
pdpatient in reply to Kwinholt

That's atrocious. The cost of state provided insurance is in fact a lot cheaper. Fortunately, all of my employer pays into the system and I have to contribute as well which is very little.

I don't think that the insurance company can ask for their money back unless social security pays for the past two years retrospectively. Then of course, you can't double dip.

RKM

laglag
laglag in reply to pdpatient

1) Yes. They may reduce it if you are making money elsewhere or receiving disability from another source. 2) I thought it was 6 months to a year but I just looked it up and it says 24 months. I'm still covered under my husband's plan

3) This question has a lot of specifics. I'm attaching the Government website. It explains a lot. There are 5 questions you can answer about your paticular situation to see if it you would be eligible for disability. The 5th question should help you with your question. The website has a lot of information but sometimes it's overwhelming.

ssa.gov/benefits/disability...

Let me know if you have anymore questions.

I am in Canada. When I was diagnosed, I had already been suffering for ten years with various symptoms. I was a teacher and had decided to go to half time the year before diagnosis because I was finding it hard to get through the day. 55, on half pay, diagnosed and then I was told because I was only half time I was ineligible for the disability insurance. I had paid for this insurance for my whole career? Live and learn, I guess? The weasel words.

This is a great video that explains US Social Security.

youtu.be/2Zax1rDO_w8

RKM

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