I don’t think disabled people should lose their benefits when they get married.
Adults who became disabled before age 22 risk losing their benefits when they get married. Any benefits they receive through a parent’s work record are discontinued, and if their spouse makes too much money, they can’t receive SSI either. All disabled people on SSI, regardless of when they became disabled, risk losing their benefits by getting married. The only people who are guaranteed to keep their benefits are those who worked long enough to receive SSDI through their own work record.
Marriage is an important religious and social milestone for many people, and it confers important legal protections upon couples. I think that all disabled people should be able to get married without losing their only source of income and their financial independence.
I think “losing” applications is SOP, unfortunately. Not just the SSA, I lost food stamps and Medicaid coverage for at least 2 or 3 months a year over that. Every year. Existing file? They never heard of you before. Sorry you got that, and the rest
I’ve actually never had issues with medicaid I don’t think but I did lose cell service because I have a subsidized phone and they screwed my application up (I lost my phone number too)
This is my second denial for ss they apparently didn’t use the old files or the new files so i have no idea what the fuck they were even doing for the last 6 months. I get to talk to my therpist/social worker on monday and hopefully they can help me avoid it happening again
I lost Medicaid this year because of bullshit like that. I got it back and got retroactive Medicaid for the time I was without it, which is good because I’d never have been able to pay the hospital bills without it, not in a million years. But it was a serious hassle, and all happened for really stupid reasons. I’m just glad I have a case manager who was capable of doing all the legwork to get it back, because I’m not even remotely capable of dealing with Medicaid bureaucrats.
In my case, also, Medicaid has tried to deny me on the grounds of income before, even though I’m in a protected category of people (in my case, Disabled Adult Children, there are other categories treated the same as well) who are supposed to be considered equivalent to SSI recipients for Medicaid purposes (meaning that I have no income limit for Medicaid). I would call them up (back when I could use the Internet for relay purposes, before they required all kinds of bullshit to be able to do that) and tell them “Turn to page ____ of the Medicaid manual” and they’d just repeat at me “You have too much income.” No matter how many times I told them to just open the frigging manual and what page to open it to. Then I got Legal Aid’s lawyers to call them and tell them the exact same thing, and it was fixed with one phone call. That happened to me at least twice.
This time though it was something related to a change of address or something like that. But it seems like they’ll drop you for practically any reason.
And I’ve found that any bureaucracy whose basic goal is to save the government money by shutting as many people out of the program as possible, will do blatantly illegal things, including losing files on purpose (or pretending to have lost files), basically hoping that you won’t fight back. And then half the time if you fight back even a little they’ll cave in. They’re just banking on the fact that, statistically, most people aren’t going to have the time, energy, knowledge, and/or ability, to fight back, so they can save a lot of money by just ignoring people’s applications until they send in the equivalent of Legal Aid.
California’s Regional Center system is notorious for pulling stunts like that. In my case, for instance, they simply did not notify me when I was accepted as a Regional Center client. The time for the notification came and went and they simply did not return phone calls asking if I was accepted. The moment my mother sent them a letter by way of Protection and Advocacy, they suddenly sent me a letter saying I’d been accepted. They were just hoping that we’d give up and go away when we didn’t get a response out of them. And that’s because a large number of people wouldn’t know to contact P&A, and would either continue making fruitless phone calls, or give up assuming they’d not been accepted to begin with.
People tell me it’s too cynical to believe that places like the Regional Center exist in order to save the state money by denying people services, but that really seems to be their actual role in the world, as seen by themselves. And Social Security, Medicaid, and the like are no different that way. They’re all about making it as hard as possible to get benefits. And that includes people who absolutely do qualify, who are even acknowledged by the state as qualifying, who simply aren’t told that they qualified in the hopes that they’ll assume they didn’t and go away. And for things like Disabled Adult Child benefits and Medicaid, in states where DAC recipients automatically get Medicaid no matter what our income… they’ll basically pretend that they don’t know the law, because it’s so easy to pretend given how small and obscure the groups are that qualify in this way.
All of which adds up to a nightmare for anyone trying to get any kind of benefits or services anywhere, whether they technically were approved or not.
A little more context, in case anybody missed that link in the last post.
You’ve been receiving benefits for a couple of years, and your regular “review” came and went. They probably made you fill out that dehumanizing form about what you are and aren’t able to do (which you need to answer as if you’re talking about your worst days; you’ll probably feel like you’re exaggerating if you do it right), and maybe they made you see one of the horrible state-paid doctors that are likely to minimize your disability, trick you into hurting your own case, and lie about what you said.
You hoped it was all over, but the letter came back saying that “your health has improved” and you are no longer disabled. You want to laugh – because your health has probably only declined – and cry, and scream, and you probably have thoughts of ending it all.
Before you do anything else, bring the letter to your local Social Security office and request an appeal. Check the box that says you want to stay on benefits while your appeal is processed. You must do this within 10 days of when they think you received the letter (which is probably earlier than when you actually received it). If the office is open when you get the letter, go now. If not, go the next business day. You cannot afford to put this off.
Give them the names and contact information of any medical providers you have seen since you filled out the disability review paperwork. Save a copy of all the paperwork from this visit in case they claim to have lost it.
The next step is to go to your local independent living center and ask for advice on your case. They may be able to recommend doctors and lawyers to help you win.
If there isn’t one in your area, or if they can’t recommend a lawyer, look for a disability lawyer here or contact your local legal aid.
From now on, your full-time job is winning your appeal. (I know you’re on disability because you can’t actually work a full-time job; that’s why this system ends up killing so many people. I hope you have friends or family to help you through this process.)
Go to as many appointments with doctors, psychologists, physical therapists, and whatever other medical providers apply in your case, as you can handle. Make sure to save their contact information, and whenever you go to a new one, go to the Social Security office and update your paperwork with their information.
Stay in regular contact with your caseworker at the state disability determination office; their name should be printed on the denial letter you got. Ask them if they need more information. Being in contact with them might actually convince them not to “oops, mysteriously lose” your paperwork or mix you up with someone else (yes, this does actually happen).
If you’re lucky, you won’t have to go to a hearing at all, and they’ll reinstate you after a reconsideration. If you’re not so lucky, you’ll have to go through several stages of hearings. The odds are in your favor at these hearings. Don’t lose hope. They need to prove that you have medically improved enough to go back to work, which you haven’t.
Yay, you’ve been reinstated! What do you do now? Well, this has probably caused a hiccup in your Medicare. Even though you checked the box that said you wanted to continue your benefits, something probably got screwed up. If you’re on SSI, they’re probably deducting the Medicare premiums from the months you were considered “not disabled” from your checks even though SSI recipients are supposed to have their Medicare paid for. Your state SSI supplement might also be screwed up. Your Social Security office will tell you who you need to call/visit to expedite this being straightened out. Medicare may also have refused to cover doctors’ visits from the time you were considered “not disabled” and you’ll have to call or write them to appeal that.
Good luck, may everything work out in your favor, and may your next review go off without a hitch.
Hopefully the ABLE accounts can help for at least some of the people who are eligible, and actually have some way of getting the extra savings at all. Covering otherwise difficult medical and dental expenses (besides educational) was part of the idea behind that, to begin with.
Shame this is only an option in a minority of states, and only for people who became officially disabled before 26. Not to mention, as already said, that the vast majority of people relying on SSI are unlikely to be able to put away much/any money without the help of family and friends. At a maximum of 75% of the poverty line?
But, it’s particularly nasty how Medicaid does not cover dental care for disabled adults.
Besides the basic issue of finding the money at all, there’s also the $2000 individual asset limit with SSI. One root canal is liable to cost more than that. Some of us are also dealing with conditions which directly affect our teeth. It’s a mess.
That’s actually one of the reasons I ended up with a bit of a dental pileup, after I moved into a better financial situation. When I was on SSI, I got one badly needed filling done for $20 through a free clinic volunteer dental program with an extremely long waiting list. (And was glad for the opportunity, I tell you what.) That was the full extent of dental access over nearly 10 years. It would probably still be that way if I were on SSI. My mouth has needed a decent bit of catch-up work as it is, maybe not too surprisingly.
And I know I’m far from the only one to have ended up in a situation like that. It’s unconscionable that Medicaid does not have to provide any dental coverage, for people who are quite deliberately kept that poor. It’s unconscionable that anybody is kept away from dental/medical care, period. It just adds a few extra layers of nastiness, setting people up in that position because they are disabled and needing to rely on SSI/Medicaid.
NEW YORK — Justin Bainbridge is 27 and works two jobs, but he wasn’t
allowed to start saving money for his future until a few months ago.
Bainbridge
has Down syndrome, and like other people with disabilities who receive
government benefits, he can’t have more than $2,000 in savings. If he
does, he would start to lose those much-needed benefits. But a new type
of savings vehicle is giving Bainbridge, and others, a chance to save
more cash.
Known as ABLE accounts, they let people with
disabilities and their families save up to $14,000 a year without losing
benefits. The accounts, which were made possible by a law signed two
years ago, are operated by individual states and are similar to 529
college savings plans. So far, 16 states offer the plans and about 10
more are expected to do so this year. Most of the states let
non-residents sign up. Each state has different rules or maintenance
fees, with some charging as much as $15 every three months.
Disability
advocates say the accounts are badly needed, since people with
disabilities were forced to spend extra money to avoid losing benefits.
With ABLE accounts, money saved can be used to buy anything that helps
the life of the person with a disability, such as rent payments, school
tuition or groceries.
“I’m saving for a new couch,” says Bainbridge, who shares a two-bedroom apartment in Omaha, Nebraska, with a friend.
Since
June, he has put away more than $1,800 in an Enable account, the ABLE
program run by Nebraska. He makes about $5,200 a year from his part-time
jobs, one folding towels at a gym and another collecting movie tickets
at a theater. But he still needs his monthly Supplemental Security
Income cash benefit to help pay his rent and live independently, says
his mother, Kim Bainbridge, who also stashes away money for him in the
ABLE account.
For
years, disability advocates have tried unsuccessfully to increase the
$2,000 savings limit, which hasn’t been changed in nearly three decades.
“It
kind of shackles you to a life of poverty,” says Christopher Rodriguez,
a senior public policy adviser at the National Disability Institute in
Washington.
The idea for ABLE accounts came about a decade ago
from parents of kids with disabilities who were frustrated that they
could not easily save money for their children. One of those parents,
Stephen Beck Jr., spent years advocating and lobbying for a law. Beck
unexpectedly passed away in 2014, just a few weeks before President
Barack Obama signed it into law. To honor Beck, the law was named The
Stephen Beck Jr. Achieving a Better Life Experience Act.
His
widow, Catherine Beck, is using an ABLE account to put away money for
their 17-year-old daughter Natalie, who has Down syndrome and wants to
go to cosmetology school to work at a nail salon. The Becks were able to
easily save money for their eldest daughter, who does not have a
disability. But for Natalie, they had to create a special-needs trust
that required hiring a pricey lawyer to set up.
“Her savings has not grown like her sister’s has,” says Catherine Beck, who lives in Burke, Virginia.
To
qualify for an ABLE account, the account owner must have had a
disability before their 26th birthday. Anyone can put money in it, such
as family or friends. If the account goes above $100,000, the person
with the disability will lose monthly government cash benefits until it
drops below that level again. Medicaid health benefits are never
affected, no matter how much money is saved. Money can be invested in
index funds and earnings are not taxed.
“For the first time a lot
of individuals will be able to work, save money and get some growth out
of it,” says Adam Beck, director of MassMutual Center For Special Needs
at The American College in Bryn Mawr, Pa.
When
the person with a disability dies, Medicaid can claim any leftover
money as payback for health care paid after the ABLE account was opened.
Since each state has different rules and fees, the ABLE National
Resource website has a tool that compares the programs.
Matthew
Shapiro, who lives in Richmond, Va., and works to promote the state’s
ABLE program called ABLEnow, says finally being able to have some
savings helped reduce his money worries. The 26-year-old, who has
cerebral palsy, uses a power wheelchair to get around and unexpected
repairs can be costly. He travels sometimes for his business, 6 Wheels
Consulting, which helps educate companies and organizations on
disability issues.
“Being a person with a disability is expensive,” says Shapiro. “These accounts are so much needed.”
1) ABLE accounts are amazing for the people that they help but
2) If you become disabled later in life (which happens to a lot of us) you can’t access this, and are stuck in the same penury loop that you are now.
I became disabled in my 30s. I can no longer work an office job, because I’d have to somehow magically become able to work 40 hours a week for a year to be covered by FMLA again, which will never happen. If I ever need to go on disability, it will basically completely screw us over as a family. Basically the only reason why I’m not going for disability right now is because of how much it would mess up our ability to try to get out of debt and save what scraps of money we can.
So – yes. These are great. But there is a huge swath of the disabled community who could be helped by these and aren’t being helped. I’m not sure WHY people who become disabled as adults after 26 can’t access these accounts… but it would really help a lot of us escape the disability penury trap, in which you cannot save any money, so budgeting your income doesn’t help, because if you have too much cash, they take away your income…
In order for disabled people to receive any sort of financial assistant for their housing, food, bills, medical supplies, etc., they cannot ever have more than $2,000 of resources to their name. Ever.
It doesn’t matter what it’s for.
You’re saving up for a new wheelchair?
For college?
To put a downpayment on a house?
Hell man, you just happen to budget for once in your life so that you can have some extra money in case something bad happens?
Your benefits immediately get cut off if you’re a cent over $2,000.
And, even worse, you usually end up having to pay back every dollar the government gave you that month.
So say you get $400. If they find out you’re twenty dollars over the resource limit, you have to give them all $400 back and you undergo an investigation of your funds to see if you will continue getting money.
“What if I spend the money that day?”
Doesn’t matter. In fact, from what I can tell, people who do this are actually put under investigation for fraud.
And yes, this system literally kills people.
Remember when “Guardians of the Galaxy” came out? one of Rocket Racoon’s creators, Bill Mantlo, suffered an accident in 1992 and has irreparable brain damage.
before the movie came out, Marvel gave him an exclusive preview screening. SOme people were upset because they felt if Marvel was really wanted to thank mantlo, they should have donated money to Mantlo’s family.
Bill Mantlo’s brother had to come out and explain: If Marvel gave them monetary aid, Bill Mantlo would lose his financial assistance.
That’s so utterly depressing.
disgusting
I have friends on welfare who won’t pick up a penny in the street because they’d risk the welfare they struggled to get for 10 years.
oh look another fucked up thing in this world. let’s just add it to the list. number 63858b
My brother has been on California State SSI for autism for the last 10 years, and he absolutely has to (no joke, HAS TO) spend all 720 bucks of his SSI every month, because if he puts it in the bank he risks losing his SSI altogether.
Sometimes, at the end of the month, he has no idea what to do with his money because the whole month went by and he still has 400-ish bucks in his account, and he fucking panics because he doesn’t want to get anywhere near 2,000.
And here’s the funnest part of the story!
One day he did a huge commission on Second Life and wound up earning 1500 bucks off of it, and he told the guy to donate it 500 bucks at a time over 3 months. The guy didn’t want to, and just donated all 1500, which put my brother at 2,036 bucks.
The state IMMEDIATELY (I’m talking less than an hour) called him up to tell him over the phone that they were canceling his SSI, because they noticed he had gone over the 2,000 buck threshold. He had to tell them that someone had made a charitable donation to him and that this was not a common occurrence in any way shape or form, and upon not believing him, my mother had to call to talk to them as his legal caretaker and say basically the same thing until they called off the cancellation of his SSI money.
He also had to cancel his renter’s assistance because it put him to 1,062 a month, so if he went 30 days without spending any money they’d cancel his SSI altogether. Like, none of us in the family have any fucking clue why that regulation is in place and it’s the stupidest shit in human history.
Please, legal side of Tumblr, tell me what positive reasoning this law has?
It’s not just money, though. Things you own can count against your resource limit as well provided that they’re not exempt and provided that they’re worth money.
Also, the rules about what is and is not exempt from being counted against your resource limit are incredibly vague and deliberately open to interpretation. Even things that are normally exempted like clothing or furniture could be deemed non-exempt if a capricious bureaucrat decides that it’s actually worth too much money and thus counts as an ‘investment.’
As someone who receives SSI this causes me a huge amount of stress.
This is so unbelievably fucked up
I knew a blind guy who apparently needed to get some kind of “medically necessary equipment” declaration to try to keep his computer from getting counted against the $2000 individual asset limit. He was in college, and really really needed access to screenreading software–which helped justify his even needing it at all.
That was also in the early ‘90s, when most people did not have PCs at home, they were considered more of a luxury item, and you could EASILY spend most if not all of that $2000 on a new desktop system. Forget laptops.
As much as the costs of basically everything but certain technology have gone up in the meantime, that $2000 individual asset limit for SSI has not.
A major purpose of allowing a certain amount of assets was: to cover major costs of an urgent nature, such as to replace a furnace or another essential appliance. The costs of such items have increased considerably since 1989.
In order for disabled people to receive any sort of financial assistant for their housing, food, bills, medical supplies, etc., they cannot ever have more than $2,000 of resources to their name. Ever.
It doesn’t matter what it’s for.
You’re saving up for a new wheelchair?
For college?
To put a downpayment on a house?
Hell man, you just happen to budget for once in your life so that you can have some extra money in case something bad happens?
Your benefits immediately get cut off if you’re a cent over $2,000.
And, even worse, you usually end up having to pay back every dollar the government gave you that month.
So say you get $400. If they find out you’re twenty dollars over the resource limit, you have to give them all $400 back and you undergo an investigation of your funds to see if you will continue getting money.
“What if I spend the money that day?”
Doesn’t matter. In fact, from what I can tell, people who do this are actually put under investigation for fraud.
And yes, this system literally kills people.
Remember when “Guardians of the Galaxy” came out? one of Rocket Racoon’s creators, Bill Mantlo, suffered an accident in 1992 and has irreparable brain damage.
before the movie came out, Marvel gave him an exclusive preview screening. SOme people were upset because they felt if Marvel was really wanted to thank mantlo, they should have donated money to Mantlo’s family.
Bill Mantlo’s brother had to come out and explain: If Marvel gave them monetary aid, Bill Mantlo would lose his financial assistance.
That’s so utterly depressing.
disgusting
I have friends on welfare who won’t pick up a penny in the street because they’d risk the welfare they struggled to get for 10 years.
oh look another fucked up thing in this world. let’s just add it to the list. number 63858b
My brother has been on California State SSI for autism for the last 10 years, and he absolutely has to (no joke, HAS TO) spend all 720 bucks of his SSI every month, because if he puts it in the bank he risks losing his SSI altogether.
Sometimes, at the end of the month, he has no idea what to do with his money because the whole month went by and he still has 400-ish bucks in his account, and he fucking panics because he doesn’t want to get anywhere near 2,000.
And here’s the funnest part of the story!
One day he did a huge commission on Second Life and wound up earning 1500 bucks off of it, and he told the guy to donate it 500 bucks at a time over 3 months. The guy didn’t want to, and just donated all 1500, which put my brother at 2,036 bucks.
The state IMMEDIATELY (I’m talking less than an hour) called him up to tell him over the phone that they were canceling his SSI, because they noticed he had gone over the 2,000 buck threshold. He had to tell them that someone had made a charitable donation to him and that this was not a common occurrence in any way shape or form, and upon not believing him, my mother had to call to talk to them as his legal caretaker and say basically the same thing until they called off the cancellation of his SSI money.
He also had to cancel his renter’s assistance because it put him to 1,062 a month, so if he went 30 days without spending any money they’d cancel his SSI altogether. Like, none of us in the family have any fucking clue why that regulation is in place and it’s the stupidest shit in human history.
Please, legal side of Tumblr, tell me what positive reasoning this law has?
Happy 4th of July everyone! This is what the “nation of opportunity” looks like.
I’m curious though, if this counts towards money in your paypal as well? Like, i know there are ways to get donations/payments through paypal, and you could send yourself money from your paypal to your bank (I have to do it when i get paid by clients/commissions i do). Are they able to track your paypal at all? Could you technically hoard money in your paypal? Are you allowed to have more than one bank account, or is that considered fraudulant behavior? (I know when my Grandpa, who was illiterate, came into our care, he had a bank account attached to his name, but since his relatives no longer wanted to care for him, we had to get “power of attourney”, to handle all of his financial shit, and my mum was on SSI and had her name on two bank accounts because of that, but i don’t remember if it affected her SSI or not??)
Good Question.
And this is also why a lot of disabled people don’t work. Because if they got a paycheck, they’d lose their SSI.
(”But!” I hear you say, “If they got a paycheck, they wouldn’t need SSI!”)
Ah, but then they’d also lose the insurance that pays for their medical equipment and medication, and personal care attendants that help them bathe and dress and eat, etc.
An entry-level job might allow you to have more than 2,000 in the bank after a few months (and the government could only take back what you owe in taxes, and not the whole thing), but it’s not going to pay for all the other things you need to stay alive and not die in a puddle of your own filth.
And if you’ve been disabled since childhood, you therefore can’t afford to ever get an entry-level job. … And good luck getting a salary in the upper range of five-figures, that you’d need to afford for paying for all those needs out of pocket, if you’ve never had that entry level job to begin with.
But, no: disabled people who have some skills but are not employed are just cheats and scroungers… Right. [/sarcasm]
(This, BTW, is also why we need single-payer health care, a living wage minimum, and a universal basic income, so corporations can’t jack up the prices of healthcare beyond the finances of 99% of the nation’s populace.)
Urocyon's Jaunts 2.0 