USA - 2022 Millions Missing protest: Online training session for those taking action from home

ahimsa

Senior Member (Voting Rights)
Reminder for anyone who wants to help out with the 2022 Millions Missing protest scheduled for Monday, September 19.

There's an online training session tomorrow - Sunday, September 11, 12 pm Pacific Time, 3 pm Eastern Time - for people who will be taking action from home.

I believe that includes social media, email, phone calls, and whatever else may have been planned.

You can RSVP here:

https://www.meaction.net/event/mill...l-training-for-those-taking-action-from-home/

The software they use for online meetings is BlueJeans just in case you need to download it in advance.
 
the day of the Queens funeral
The UK protest in London was scheduled for a different date, Tuesday, Sept 13.

That London protest has been cancelled according to this tweet from MEAction UK:


The USA in-person protest in Washington, DC, is the one scheduled for Monday, Sept 19.

The Sept. 19 protest in Washington, DC, has not been cancelled.

Although President Biden will not be in the White House during the protest (he will be at the funeral) the organizers believe his presence would not likely make much difference in the success of this protest.

When all the other factors were considered (difficulty getting permits to be in front of the White House, and so on) the organizers decided to keep the date in place.

That means the at home participation (social media, email, phone calls, contacting media) is still going on as scheduled.

Most at home activity will be on Sept. 19, but you can still join in before or this date.
Scheduling a post on social media is another option. I know that works on twitter, but I don't any use others so don't know if that works on Facebook, Instagram, TikTok, etc.

I'm still working on notes from yesterday's training meeting. I'll post an update on this same thread after I finish.
 
This is a short summary of the Sept. 11 online training meeting about at home actions. These actions are meant to support the in-person protest to be held in Washington, DC, on Sept. 19.

I believe this slide presentation shown at the meeting, or some other format with the same information, will be available on the MEAction website later (a day or two?). I took a few screen shots and have included them below.

NOTE: I forgot to mention that this obviously means you can't click the links! You have to wait until the links are available on the MEAction website or in one of their social media posts. These notes are just to give you time to read about the different options and pick one.

At home actions do NOT have to be done on Sept. 19 if that date won't work. Folks can participate earlier this week or the day after. Or try to schedule your posts/tweets in advance so they show up on the 19th.

Demands

The protest and at home actions are in support of these policy demands (there may be a few changes in wording in the final version):

Demands.png
There is a range of actions that people can do rom home depending on their energy level. These can be done by patients and allies - recruit your friends and family if you can!

The list of actions is ranked by the amount of energy required to do them, ranging from "1 spoon" to "5 spoons."

1 spoon action
(includes an option for folks who don't have social media)

One Spoon Action.png

2 spoon action
This action will be partly automated with link on the MEAction website

Two Spoon Action.png

3 spoon action

Three Spoon Action.png

4 spoon action

Four Spoon Action.png

5 spoon action

Five Spoon Action.png

There were a lot of comments and discussion afterwards (eg, contacting local TV/radio/online news media to ask them to cover this story). But these 5 actions should give people plenty of options to choose from!
 
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Direct link to #MillionsMissing 2022 Activism From Home Toolkit https://docs.google.com/document/d/11vr3VLii0j6Jq8Kvk0eTG11M940u6Nk6v1iKx4v0WYg/edit#

I just sent this letter to ME Action using the "contact us" link on the bottom of their website.

I can’t read 7 pages now and have only read the demands section. I’m unable to write very much so I’m limiting my comments to the economic demands section only. Here are some thoughts off of the top of my head which is all that I can do in hope that you can make this section better in the extremely limited time left.

Why is this (as usual) all being done so last minute without adequate input from the community? I consider this ableism!

While I’m glad to see economic support FINALLY being addressed I have concerns about the following:

- What aren’t SSI benefits mentioned?

- Why is there no mention of the poverty we are forced to live in on SSI benefits? This could be a teaching moment in our press coverage!

- What about the review process for those already on benefits where every few years they try to throw us off benefits?

- What about people who have become so severe that they can’t leave their home to even have medical records or doctor’s to fill out forms?

- What about the unreasonable amount of time we have to fill out paperwork?

- Why is this economic section so vague? (Why is the whole document so vague?) How are these demands?

- What does “case management and care coordination” even mean?

Lastly, I’m angry that I have to use my energy to write this and with a migraine no less. I am posting this on Science for ME in hope that others may contact you with their questions or suggestions and that you will read comments people write on the forum https://www.s4me.info/threads/usa-2...sion-for-those-taking-action-from-home.29449/
 
Biden needs to be held to his promise to expand SSI benefits!

SSI’s strict rules

When Congress passed the program into law in 1972, it said SSI should ensure the nation’s “aged, blind, and disabled people would no longer have to subsist on below-poverty-level incomes.” But its benefits have not kept up with modern standards of living.

The maximum SSI benefit individuals receive in 2021 is $794 per month, or $9,530.12 per year. That’s less than 75% of the federal poverty line. It’s even more dire for couples. If you receive SSI and you’re married to another SSI beneficiary, you don’t each get the full benefit. Instead, you share a benefit of $14,293.61, just 50% more than if you were single. That means a retired couple in their 80s, or a younger disabled couple, could be financially better off getting divorced than staying married.

SSI is meant to serve only the poorest Americans. But as the cost of living has grown dramatically since the 1970s, SSI’s rules have not kept pace with inflation, so people who meet the asset and income limits for the program have lost purchasing power over time.

People who receive SSI must have assets of less than $2,000 for an individual or $3,000 for a couple—numbers that have not been updated since 1989. This disqualifies anyone with rainy day savings or even a small retirement fund. Income is limited, too. SSI participants cannot make more than $65 in earned income and $20 in unearned income each month, which is the same amount the program allowed when it began nearly 50 years ago. After those cutoffs, their benefits go down for every dollar over those thresholds. Their checks can also be reduced if they receive “in-kind support,” such as getting a bag of groceries from a friend or staying in a family member’s home for free.

These rules are not only stringent for the recipients, but also burdensome for the Social Security Administration (SSA), which is already strained under its current workload, says Stacy Cloyd, director of policy and administrative advocacy at the National Organization of Social Security Claimants’ Representatives. If a SSI beneficiary wins $25 from a lottery ticket, for example, they have to report that to the SSA and see their benefits go down by $5. “SSA would have to process that report and have to change those benefits and change them back the following month. And that takes a lot of time,” Cloyd says.


A chance for reform

In the spring of 2020, Biden vowed to expand SSI benefits as part of his presidential campaign’s disability policy platform. Democrats in Congress hope to hold the President to that promise. In April, Brown and freshman Democratic Rep. Jamaal Bowman led a letter with 18 Senators and 33 members of the House urging Biden to prioritize the issue.

Their plan would bring the SSI benefit up to the poverty line, increase the asset limits to $10,000 for an individual and $20,000 for a couple, update the income rules and eliminate the marriage penalty and rules that penalize people for “in-kind” support.


Democrats Want to Reform This Program That Helps Poor Elderly and Disabled Americans

https://time.com/6082787/democrats-sherrod-brown-ssi/

Edited to add article title.
 
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I remembered one point from the Sept. 11 meeting that I want to share.

When considering the algorithms used by social media (twitter, facebook, instagram, etc) those posts with unique content do better than repeated content.

So the organizers recommend posting new photos rather than just using pre-made graphics. Same goes for original text vs. cut and paste.

Of course, if you only have energy to retweet or share, then do that!

But if you have energy for new posts then opt for original content rather than older graphics/text/videos.
 
This is the email I got from ME Action today. I sent them the 2 things I posted above in posts #8 and #9.
Hi Laurie,

Thank you for reaching out. I am sorry you couldn't attend our town hall or training this past weekend or be a part of other discussions we have had on slack and email to give your input . People with ME/CFS and Long COVID are the leaders in organizing this protest and have been working hard to be inclusive and accessible.

Are you on the MEAction email list to get information on our future events so you can be included in earlier discussions moving forward?

Thanks kindly,
Laurie

I’ve been sick since 1983 and I’m severe/very severe. I’ve left my home once since 2008 and it was to go to the ER by ambulance. I don’t have homecare or an abled caregiver. I often have sleep reversal, can’t keep a schedule, am very limited in what I can do as well as needing a lot of extra time with things. Many people talk too fast for me to be able to pay attention to them at all, and with the non-recorded meetings ME Action has, I can’t take breaks to process what I can listen to or come back to it later to refresh my memory.

I attended a meeting over the weekend regarding activism from home and it was overwhelming for me. In part they were going over the unfinished document that they had to finalize and planned on releasing Monday but didn’t release until Tuesday. I thought that we were told we could respond to it after they released it (even though that didn’t make a lot of sense to me given the timeline). I don’t know who created it, when it was created, or when I could have given feedback.

I am on their email lists. I can’t read all that email but I saw nothing in the headers about contributing feedback beyond attending the meetings, which I did, I attend the meeting that pertained to me which was about activism from home.

I don’t know why they don’t have a forum and I’m not interested in Facebook groups. I have no idea what slack even is. I’m very disappointed with this reply. I also feel like they have been blowing off complaints about inclusiveness since the first list of demands haphazardly came out for the first protest.

Lastly, how can they be promoting this without including SSI?
 
I received this email tonight regarding the information I sent to ME Action that is in post #9 above. It would have been nice if she told me what the line was edited to.

Thank you for sending this over to us, Laurie.

We edited the social security line in our economic demand and I will send these specifics to our press team so they can have these for talking points.

Thanks kindly,
Laurie
 
I sent one more letter to ME Action:

Dear Laurie Jones,

Please send this to your press team too so they can have these talking points along with the ones I already sent you from the Time article, “Democrats Want to Reform This Program That Helps Poor Elderly and Disabled Americans.” There are more articles but I’m not well enough to do anymore.

President Biden needs to get us out of the 1970s and 1980s by updating and expanding SSI like he promised.

We need to #DemolishDisabledPoverty while we fight for the #MillionsMissing.

Thank you,

Laurie P


This whole article is excellent. Here is a sampling of the information in it:

https://thehill.com/blogs/congress-blog/politics/550027-the-safety-net-program-congress-forgot/

The safety net program Congress forgot

by Rebecca Vallas and Matthew Cortland

For many of the program’s roughly 8 million disabled and elderly beneficiaries, it can mean the difference between having a roof over your head and being out on the street. But we’ve also witnessed the human consequences of decades of federal neglect: SSI is now a program that consigns disabled people and seniors to abject poverty.

With a maximum monthly benefit of just $794, SSI tops out at about three-quarters of the federal poverty line. That isn’t enough to rent a one-bedroom apartment in any state in the U.S. — even if you spent 100 percent of monthly benefits on rent. The average rent for a modest one-bedroom apartment in 2020 was $1,063 per month — 128 percent of an SSI recipient’s monthly income.

Meanwhile, under current law, SSI beneficiaries are legally prohibited from having even modest emergency savings. The program’s long-outdated asset limits have been stuck at $2,000 for individuals and $3,000 for couples for more than three decades. These rigid limits have lost immense purchasing power over the years. Had they been updated for inflation, they would be $9,500 and $12,675 respectively today.

--------------------------

Further pushing already-struggling beneficiaries even deeper into poverty is a mean-spirited rule called “in-kind support and maintenance,” which targets beneficiaries who are lucky enough to receive help from loved ones with meeting their basic needs. A bag of groceries to help ensure you’ve got food to last through the month or a place to stay to help get you off the street can trigger a one-third reduction in SSI’s already sub-poverty-level benefits.

Along with economic security, marriage equality is out of reach for SSI beneficiaries too. The program’s rigid marriage penalties reduce benefits by one-quarter for SSI beneficiaries who marry another SSI beneficiary, and can lead to outright loss of benefits for those who marry someone not receiving SSI. Imagine not being able to marry the person you love for fear of losing survival income.

During the campaign, President Biden pledged to right these wrongs, committing that people with disabilities and seniors should never have to live in poverty in America. His historic disability policy platform spoke to each of these shameful policy failures. Biden committed to raise SSI benefits to the federal poverty level; update outdated asset limits and income rules; eliminate the cruel in-kind support and maintenance rule; and abolish SSI’s marriage penalties.

---------------------------

This call comes on the heels of recent polling by Data for Progress, which confirms that expanding and strengthening SSI isn’t just the right thing to do — it’s also overwhelmingly popular among bipartisan majorities of American voters. Fully 77 percent of Americans want to see SSI’s sub-poverty-level benefits increased to at least the federal poverty level — which would amount to $1,073 in 2021. And 7 in 10 want to see SSI’s outdated asset limits raised or outright eliminated, to allow beneficiaries to save for the future.

These long-overdue reforms would significantly reduce needless and preventable poverty among people with disabilities and older adults. They would also disproportionately reduce poverty among beneficiaries of color. Updating SSI would go a long way towards finally bringing this crucial but long-forgotten component of our social safety net into the 21st century as policymakers work to “build back better.” And not a moment too soon, as COVID “long-haulers” begin to turn to SSI for critical income support.
 
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Laurie Jones at ME Action sent me an email today saying, "Thanks, Laurie! We love Rebecca Vallas and work with her closely. I will see if she could give a quote specifically."

Yay! :)
Thank you, @Laurie P :)

That article explains the situation quite well.

To add another item that's related to financial support for disabled patients, one of the things mentioned in the training meeting on Sept. 11 (which I just remembered!) is the "Stop The Wait" Act. See https://www.congress.gov/bill/117th-congress/house-bill/6583/text

This bill would get rid of the waiting period between when disability is approved and when Medicare coverage starts. As you probably know, after someone is approved for SS disability benefits there is a 2 year waiting period before they can get Medicare coverage (there are a few exceptions).
 
Interesting coincidence. This article from NPR, about the problems with SSI, was just published today.

High rents outpace federal disability payments, leaving many homeless

https://www.npr.org/sections/health.../social-security-disability-inflation-poverty


Good find, @ahimsa :thumbup:. What a heartbreaking story.

This jumped out at me. I don't think I've come across this information before.

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.
 
There are now two links that you can use to support the USA protest.

This link sends an email to President Biden:

There's a form to fill out which requires your name, mailing address, email, and phone. These fields are required by the White House contact form.

This link creates a tweet that tags President Biden (@POTUS). It requires that you have a twitter account:


After the tweet is composed you have a chance to modify it before it is sent. Here's what my tweet looks like:


I made very few changes to the template. I added a siren emoji at the front and then added the new hashtag #StillSickStillFighting at the end.
 
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