Ordeals and the Empathy Gap

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Ordeals and the Empathy Gap Sam Freedman 'Comment is Freed' substack

Long read, UK focused but wider relevance:

Exerpt

An under-discussed aspect of covid policy was the speed with which government supported people financially and temporarily solved social problems. Furlough is widely seen as a success. Rishi Sunak built his reputation on it. But what’s really remarkable about it is how quickly and seamlessly it was rolled out. It was easy for businesses to use, and beneficiaries barely had to do anything at all. Likewise the additional £20 a week for those using Universal Credit was paid out without complications to all who needed it, and, briefly, reduced poverty. Rough sleeping was halved within a few weeks once it became a threat to the rest of society, though it’s now gone back up again.

This should leave us with a big question. If it was so easy then, when government was hardly operating at maximum effectiveness, why is so hard the rest of the time? How much of the misery that is inflicted on those who need government support in normal times due to poor administration and how much is deliberate?
 
We have some barriers in our disability system. When you claim SSDI (disability benefits based on your previous work record), you cannot collect benefits until 5 months after you become disabled. You have to wait 2 years after that (a total of 2 years 5 months) to get Medicare (government healthcare). 1 in 9 people die waiting for Medicare. A substantial number of people who get SSDI are at death's door, yet the waiting period is not waived if you're terminally ill. Only if you have kidney failure or ALS, which seems oddly selective.

If you want SSI, which isn't based on work history, you can't have more than $2,000 in assets. Despite inflation, the asset limit hasn't been increased since around 1980. Whether it's SSDI or SSI, getting approved can be a 3-step process. Apply, wait about 6 months. If they approve you, great, if they deny you, file for reconsideration and wait 2-3 months more. If they deny you again, request a hearing at wait around a year. If you get denied, not working for 2 years makes it hard to find a job again.

However, some aspects are better than in the UK. SSDI claimants aren't periodically re-assessed. You can't be cut off unless you've gotten better. Also, if you return to work, you can collect SSDI for 9 months, be automatically reinstated for up to 3 years from starting work, and re-apply through a simplified process up to 5 years after.
 
@RedFox - So true, there are a lot of barriers (or "ordeals") in the US system.

A short quote (my bolding) from an old NPR article that I read last year:

NPR said:
Among developed nations, the United States is one of the hardest places for people to meet the criteria for federal disability payments, according to the Organization for Economic Cooperation and Development, a global intergovernmental group the U.S. helped create to advance social well-being.
Click to expand...

Full article:

High rents outpace federal disability payments, leaving many homeless

https://www.npr.org/sections/health.../social-security-disability-inflation-poverty
 
RedFox said:
However, some aspects are better than in the UK. SSDI claimants aren't periodically re-assessed. You can't be cut off unless you've gotten better.
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I meant to ask you about this comment earlier but I forgot.

I was reassessed several times (3 times? or 4?) after my first SSDI approval in 2000/2001. (application made at age 39, age 40 when it was approved)

These re-assessments happened every 3 to 4 years even though I had not improved at all (had stayed the same, or gotten slightly worse). It was stressful and annoying to have to gather medical records and fill out paperwork again.

But maybe the social security association has stopped doing re-assessments now? I have not checked their website in a long time.

I'm 62 now so I'm unlikely to be re-assessed. At full retirement age (goes from 66 to 67, depends on year of birth) anyone on SSDI has their payments converted to retirement payments.
 
ahimsa said:
But maybe the social security association has stopped doing re-assessments now? I have not checked their website in a long time.
Click to expand...

I'm on SSI and it's been hit or miss. I've never in the twenty years since I was approved had a full medical review. I usually just get the short form that asks about 5 questions (i.e. have you improved? has your doctor said you can work? etc.) and a response a few months later saying they don't need to review further.

As SSI is a welfare program, I do get the financial review interview but it's usually been ever 5+ years. During the Trump administration I did get reviewed two years in a row, but the interview lasts for about 15 minutes and it's never gone beyond that.

What I have had is a bizarre situation in 2018 where when my mom signed up for retirement benefits, they saw me in the system and decided that maybe I had been disabled before the age of 24, which meant I might actually be eligible for SSDI benefits. And because SSI is a welfare benefit, if you're eligible for any other program, you MUST apply for it. Which, in this case, was utterly pointless. But I had to nonetheless.

IF one can get public housing or some sort of low-income housing benefit, SSI is not actually that grim. I was very lucky to get an apartment in a low-income tax credit building where I cannot be charged more than (nor less than) 30% of my income. However, things like out-of-pocket medical expenses are deducted from what is considered your income (as well as for SNAP/food stamps), resulting in a lower rent (and higher SNAP benefits) to help offset those expenses. Combined with low-income home energy assistance and Medicaid, all my basic needs are met. But my housing subsidy is by far my biggest welfare benefit. And frankly, more subsidized housing would among the most helpful things the government (aka we the people) could do for the disabled.

I can say that the $2000 savings limit on SSI is getting truly absurd. We were required to spend down the stimulus checks within a year or the money would be counted toward our resource limit. And when your monthly check is $841 (or now $914), there's not much room to save. Which means you have little cushion if an emergency happens.

Thanks @ahimsa for sharing the NPR piece. I've been trying to work on a memoir piece about what it's like to apply for government disability benefits and every little bit like this is useful. And thank you @RedFox for the CAP piece!
 
Thank you @Michelle for using your limited energy to share your experiences. :heart:

I absolutely agree that the $2000 cap on assets for SSI recipients is ridiculous and needs to be raised. And I agree that more housing subsidies are needed.

Back to my assessments for SSDI, one of my medical reviews was the long form. It was maybe 10-12 pages long, plus attachments, because ME/CFS and dysautonomia information never fit into the little boxes on the form. The rest of my reviews were all the short form.

The short form was definitely easier but there was still the hassle of having to do it all again and the stress from worrying that my benefits would be stopped for some reason.
 
ahimsa said:
The short form was definitely easier but there was still the hassle of having to do it all again and the stress from worrying that my benefits would be stopped for some reason.
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Oh absolutely! Every time I see an envelope in the mail from SSA, my stomach reflexively clenches. And I've probably just been very lucky in not getting picked for a full assessment.
 
I have had a few full assessments, but nothing at all for a bit over a decade (touch wood). Given my age and that it is only about 7-8 years until I hit the normal retirement pension age, the length of time I have been sick and on the disability pension, and the realistic prospects of any improvement let alone recovery and employment prospects, I am guessing they probably figure I am just not worth the trouble anymore.

But still very much get the fear when I get a contact from them about something.
 
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Sorry, I had a specific meaning in mind when I said re-assessment. PIP reassessments in the UK are like starting from scratch if I understand it. But continuing disability reviews rarely kick people off unless they truly get better.
 
Michelle said:
What I have had is a bizarre situation in 2018 where when my mom signed up for retirement benefits, they saw me in the system and decided that maybe I had been disabled before the age of 24, which meant I might actually be eligible for SSDI benefits.
Click to expand...
Because you became potentially eligible for Childhood Disability Benefit (DAC Benefits) which you can get if you have a retired, disabled, or deceased parent.
 
RedFox said:
Because you became potentially eligible for Childhood Disability Benefit (DAC Benefits) which you can get if you have a retired, disabled, or deceased parent.
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Indeed.

It took forever for someone at SSA to explain that to me. Initially they told me they thought I was eligible for additional benefits--which sounded batshit crazy as SSA is always trying to find ways to limit benefits. And, of course, had I turned out to be eligible, I would not have been any better off financially as they simply would have reduced my SSI benefits accordingly (and my mom's retirement benefits are very meager, about $800/month, so basically they would have replaced about $400 of my SSI with $400 of SSDI). What was bizarre was they were trying to assess my level of disability 30 years ago, but nobody could really tell me how to go about doing that. While I almost certainly had ME/CFS from 11 years old onward, how on earth would we establish my level of disability from then now? LOL

But as absurd a bureaucratic exercise as it was, it was also an enlightening personal excavation. My symptoms from 5th grade onward waxed and waned. I missed an average of 20 days of school a year because of frequent flu-like illnesses. As we went through my work history, it was clear I never met the Substantial Gainful Activity threshold. Partly because I could never work full-time and partly because the work I did was not paid very well because I had not yet been to college. When you're a kid, you have no context in which place your experiences. Thus, missing that much school just seemed normal to me. I knew by the time I got to college I could not work a 40 hour, Monday-Friday 8-5 job, but I didn't know why. And I felt tremendous shame about it.

Had I received SSI when I was a teenage (and god knows, we sure could have used the money given how little my mother earned) and through college, I would have made very different choices that may well have preserved a lot more functional capacity and made it possible for me to make a living now. Or not. ME/CFS is such a mystery--as is life itself--that it's impossible to say how things would have turned out.
 
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