SSD or SSI, who here qualifies and how do you use this money in your daily life?

[coffeelover]

I'm curious about those of you who get help from the government.

I'm not here to judge, I'm genuinely curious as to how you qualify, medical conditions, how long you worked etc.

How does getting this assistance help you with retirement?

I'm going to assume that a lot of people who get this help have a spouse who works and pays the majority of their bills out of that paycheck. Considering that the government SSD or SSI is not usually that much from what I've read.
I know if it's SSD it can be much more because it is based on the workers earnings.

So who here gets assistance and how has it changed/impacted your life? Do you save it, do you have to use it pay bills? If you get money for the kids because you are on disability do you save their money?

Also if you want to give more detail on how you got approved, what your medical conditions are I wouldn't mind reading that either.

( I don't think I qualify, not sure though, and I haven't applied for any help, but I may in the future)

[coffeelover]

So no replies but over 200 views. Why is this? To personal of a question or just no one here receives this money?

[highcountry]

SSI is asset tested. If you or your spouse has more than $2000 in savings you lose the
help. From watching a couple of friends who survive on it, it pays $700-800 a month, from which they pay their rent, Medicare bills,  food, and all other needs. It's not enough to save for retirement, and you'd lose it all if you saved it. I suspect there are very few SSI recipients on an early retirement forum.

Edited to add: SSI and SSD are very different for the people living on them, as SSD does not necessarily lock you into extreme poverty.

[forestbound]

I clicked because I'm curious too, but I have no personal knowledge of it. I do know a few neighbors who survive with both on it. Diabetes and back issues.

[CheapskateWife]

I hesitated to reply for fear of flaming judgment and face-punches, but I'm currently receiving Unemployment benefits...not exactly the same thing but govt. assistance none the less. 

We struggled with whether to apply or not, as my DH makes enough to cover the bills and his child support...however, my unemployment kept us from being able to save much at all for the future.  Our compromise was to take it, and put it all in savings for our future.  It will compound and grow in our care, and the end result will likely be a sum which reduces our future reliance on government assistance or other community social programs.  Exactly what we were doing with my income before the military moved us away from my job...again.

The irony of all this is that 10+ years ago, I really needed Unemployment benefits.  I had to moving away from an abusive monster, quit my job (my boss was my BIL), and had a horrible divorce; the Workforce commission in my state decided that I had left my work voluntarily (again...BIL was my boss) and didn't qualify for assistance.  Had to move in with my parents at the ripe old age of 27.  It all worked out but still...what a kick in the teeth!

[coffeelover]

I hesitated to reply for fear of flaming judgment and face-punches, but I'm currently receiving Unemployment benefits...not exactly the same thing but govt. assistance none the less. 

We struggled with whether to apply or not, as my DH makes enough to cover the bills and his child support...however, my unemployment kept us from being able to save much at all for the future.  Our compromise was to take it, and put it all in savings for our future.  It will compound and grow in our care, and the end result will likely be a sum which reduces our future reliance on government assistance or other community social programs.  Exactly what we were doing with my income before the military moved us away from my job...again.

The irony of all this is that 10+ years ago, I really needed Unemployment benefits.  I had to moving away from an abusive monster, quit my job (my boss was my BIL), and had a horrible divorce; the Workforce commission in my state decided that I had left my work voluntarily (again...BIL was my boss) and didn't qualify for assistance.  Had to move in with my parents at the ripe old age of 27.  It all worked out but still...what a kick in the teeth!

No face punches here. If you qualify for the benefits then you should get them, no matter what.

I'm glad you are able to save the money to help yourselves in the future. That benefits your family greatly and reduces the need for additional government assistance in the future.

[coffeelover]

SSI is asset tested. If you or your spouse has more than $2000 in savings you lose the
help. From watching a couple of friends who survive on it, it pays $700-800 a month, from which they pay their rent, Medicare bills,  food, and all other needs. It's not enough to save for retirement, and you'd lose it all if you saved it. I suspect there are very few SSI recipients on an early retirement forum.

Edited to add: SSI and SSD are very different for the people living on them, as SSD does not necessarily lock you into extreme poverty.

SSD is what I would qualify for because my spouse makes to much money for me to qualify for SSI.

I was just researching this morning and due to my medical issues, (I have several) it looks like I would qualify for SSD. Now whether or not the government approves me for SSD is a different story.
I don't want to apply just yet because I'm waiting on another surgery and want to see what happens with the result of this surgery.
It really stinks not being fully functioning but I can take care of my kids, just not as well as somebody else possibly.

[DoNorth]

I don't receive either, but I was medically retired from the military at 35 years old.  The condition could have been devastating and deadly (and ultimately may be someday earlier than I want), but I ended up in drug trial which dramatically changed the outcome with no adverse effects on my life or well being or at least none that I'm aware of.

The breakdown was the following:  $3213/month from the VA and $1681/month from DoD.  I live in Northern Virginia outside of DC so I also received a full property tax exemption (about $4500/year), free hunting/fishing license, and free admission to national state parks.   My children will also receive about $12000/year for college (adjusted to inflation) as well as my wife if she decide to get a Master's.

Basically, I took three months off after "retirement" and went back to work; realized I didn't particularly enjoy work + my DC commute and have now decided to fully retire in the next year, so to answer your question, I believe SSI or SSD could alter anyone's plan's considerably.  My pension (most of which is untaxed) would be the equivalent of an annuity worth close to $2M or more (adjusted to CPI-W) every year forever.   SSD would be less, but similar depending on your age.  If it enough to get you to FIRE, then by all means, go for it.

 I believe I would also qualify for SSD, but I don't really need it at this point

[coffeelover]

I hesitated to reply for fear of flaming judgment and face-punches, but I'm currently receiving Unemployment benefits...not exactly the same thing but govt. assistance none the less. 

 

I do think temporary unemployment benefits (how long can you collect - 6 months max?) are far different from collecting a livelong disability benefit. So don't feel bad, it's insurance that is there to get you over a temporary setback.

I don't know anything about SSI/SSD benefits but I do get a small disability benefit (around $400/month) from the VA for a military service-connected injury/disability I incurred in the line of duty. It's a bit different though in that they aren't paying you because you can no longer work, they are paying you because you are no longer "whole" like you were when you entered the service. It's not means or asset tested either since none of that matters.

That's the perfect amount of money to set aside each month for retirement. I'm sorry you went through a disabling event, but thank you for serving. :)

[k3pick]

My fiance gets ssdi. He was medically retired from the army at 21, he lost his right leg below the knee. Obviously he wasn't in the work force very long, and he gets about $900/mo from ssdi (he also gets va disability). The ssdi will stop once he is out of school and has gainful employment. Between my job and all the money he gets (va disability, ssdi, gi bill) we save at least half of it each month. We are saving for our dream home and financial independence :).

[firedup]

I know someone who made out really good. Lied & cheated on his taxes so he didn't pay in & works full time under the table. I review incomes and lots of people are making lots of money off the system. And we wonder what is wrong with the system. No offense to the legits I have just never known any. I live in a part where DDSI pays better than jobs so why not.

[Prepube]

The applications for ssi and ssdi are identical.  After they do the analysis of your work history, the eligibility technician decides which one you qualify for.  Basically, if you have never worked, you are going for SSI, and if you have worked enough quarters, then it's SSDI.  About 85% of applications are denied on the first attempt.  Then it can take three months to two years to go through the appeals process.  SSI is difficult to get approved, but does not get reviewed often after approval (if ever).  People on SSDI are reviewed more often, depending on their age.  I had an acquaintance who was reviewed four times in five years, and lost the benefit when he was found to have improved enough that the technician believed he could work again. It really sucks to be on disability, and there are very few people who actually get it who don't deserve it.  It can take so long that even if you have an asset at the beginning of the ordeal, at the end it is gone so you could pay rent or buy food.  I've known people who died before they could get their benefits.  Another difference for ssi, by the way, is that children with disabilities also may qualify depending on the severity of the disability.  They later age out of the system and have to reapply as adults if it is a lifelong disability such as severe autism or intellectual disability.

Anyway, you are less likely to find someone on ssi on a forum like this because by definition they have no resources and are probably on other types of public assistance as well. The SSDI folks are more like our veterans in that they can come from all walks of life, the benefits are more disability-based than need-based, and the person had to have worked (the chart shows different requirements for quarters required for each age group).  SSDI is more like an early retirement program and and ssi is more like TANF or welfare based on need.  It's actually harder to get ssi than SSDI.

[kythuen]

My brother had a stroke 20 years ago, and is unable to work (not that he was ever particularly interested in working, even before that).  He lives with my dad and collects a very tiny amount for SSI.  It's not enough to live on by himself (well under $1000).  He's reviewed periodically to see if he's improved, but there's really no chance that he ever will.  He's physically 56, but mentally and emotionally around 12 in terms of his ability to survive alone in the world. Plus he suffers from various physical impairments from the stroke. 

One thing I can tell you is that there is an asset limit for it that means he can't ever really save anything.  If at any point he had more than $2000 to his name, he wouldn't qualify. He's been reviewed a couple of times, but it's not excessive.

[scrubbyfish]

My son and/or I receive some benefits (and not others). We're not in the US, so unfamiliar with SSD and SSI, but here's some of our experiences with government support/subsidies in general:

-some of the supports are attached only to a condition, i.e., not savings-or-income tested, just medically-tested
-some of the supports are restricted to specific uses (e.g., rent, or medical therapy) and essentially go directly to the service provider
-some of the supports are income-tested only
-some of the income-tested supports are tested via the previous year's tax return, some by the previous month's income, and some by the previous six months' income (basically, we would have to do the equivalent of annual tax accounting up to 15 times a year, which is difficult on a variable income)
-some of the supports are savings-tested and income tested
-some of the savings-tested supports exempt savings that are in government registered savings accounts (e.g. Registered Disability Savings Account) or disability trusts (i.e., accounts that dictate/restrict how the savings are used)
-most programs allow a person to work while receiving, but some deduct all additional sources of income (work income, child support, etc) dollar-for-dollar from the support, some allow a buffer (e.g., keep the first $500/mo, rest is deducted), some allow the recipient to keep up to $5000 per year in work income and all amounts from any other source, etc

So, depending on the type of support and the tests implemented, a person may have
-enough to pay not even their basic bills,
-enough for basic bills,
-enough for basic bills and a cushion, or
-enough for bills, a cushion, plus some left over to invest.
In our case, we have been in all of the above positions, depending on how much I can supplement the budget via work. For stretches of up to 12 years we received no income-tested support -at points because work income was sufficient to disqualify us, at other points because the systems were too difficult for me to navigate while parenting a child with disabilities.

In this order, I put the money primarily into:
-essentials (rent, minimal phone option, etc)
-child's therapies and child's legal care
-long term disability savings accounts for child

Folks qualifying for benefits need to look at their entire circumstances, plus the full range of supports offered and the specific terms and conditions of each, before they can assess what might be a fit.

[maizefolk]

Since you need 400x your monthly income to retire at a 4% SWR and saving money from SSI payments would cause a person to be kicked out of the program before they've saved even 3x their monthly income (maximum asset test of $2000, maximum monthly payment from SSI of $733 if they have zero outside income), I don't think it's something you'll see as part of anyone's early retirement plans.

As an aside, the nature of the asset and income tests and the consequences for exceeding them (they get kicked out of the program and have to go back through the application process which can take months to years when, by definition the person's total net worth is barely 3 months worth of their expenses) mandate those receiving government support adopt the mirror universe version of mustachian mindset: If they're receiving $733 a month but only managing to spend $650, that's a hair on fire emergency and you better find a way to spend that extra cash quickly before it causes your income to get cut off. And you better spend that money on something that loses its value as soon as you purchase it because that asset test includes "anything else you own which could be changed to cash and used for food or shelter;".

[Miamoo]

I'm curious about those of you who get help from the government.

I'm not here to judge, I'm genuinely curious as to how you qualify, medical conditions, how long you worked etc.

How does getting this assistance help you with retirement?

I'm going to assume that a lot of people who get this help have a spouse who works and pays the majority of their bills out of that paycheck. Considering that the government SSD or SSI is not usually that much from what I've read.
I know if it's SSD it can be much more because it is based on the workers earnings.

So who here gets assistance and how has it changed/impacted your life? Do you save it, do you have to use it pay bills? If you get money for the kids because you are on disability do you save their money?

Also if you want to give more detail on how you got approved, what your medical conditions are I wouldn't mind reading that either. "

I am curious as well and started to fill out the forms on-line for SSD.  But I have so many questions.  Back story - I was diagnosed with Stage 2 breast cancer in 2007.  QUIT my job in 2009 out of shame and frustration due to what is called "chemo brain" - ie: memory pretty much gone and I wasn't able to perform as I had been.  Flash forward to 2014, cancer has returned, now Stage IV so I want to grab whatever I can while I'm still here and pay off the mortgage, invest what I can.  Less for my husband to worry about in the future.

Now, I have to call the SSA office to see exactly how to fill out the forms based on me only working part time as a subcontractor/consultant for the last 5 years.  And how to prove that I can no longer work a 40+ hour a week job.  Truly I can't.  Much less perform the duties I used to. 

Per the on-line info I'm only supposed to get $750/month or so which makes no sense (or maybe it does as I'm older and have no dependents).  My daughter was receiving $1,900/month before she passed away 2 years ago (damn breast cancer) but she had 3 dependents.  I made a lot more $ - but no dependents.  Don't understand how these things are determined.

Am interested in others input.

Aaargh.

So sorry about your situation but - go for it.  Grab what you can!  We did pay for it afterall.

[coffeelover]

I'm curious about those of you who get help from the government.

I'm not here to judge, I'm genuinely curious as to how you qualify, medical conditions, how long you worked etc.

How does getting this assistance help you with retirement?

I'm going to assume that a lot of people who get this help have a spouse who works and pays the majority of their bills out of that paycheck. Considering that the government SSD or SSI is not usually that much from what I've read.
I know if it's SSD it can be much more because it is based on the workers earnings.

So who here gets assistance and how has it changed/impacted your life? Do you save it, do you have to use it pay bills? If you get money for the kids because you are on disability do you save their money?

Also if you want to give more detail on how you got approved, what your medical conditions are I wouldn't mind reading that either. "

I am curious as well and started to fill out the forms on-line for SSD.  But I have so many questions.  Back story - I was diagnosed with Stage 2 breast cancer in 2007.  QUIT my job in 2009 out of shame and frustration due to what is called "chemo brain" - ie: memory pretty much gone and I wasn't able to perform as I had been.  Flash forward to 2014, cancer has returned, now Stage IV so I want to grab whatever I can while I'm still here and pay off the mortgage, invest what I can.  Less for my husband to worry about in the future.

Now, I have to call the SSA office to see exactly how to fill out the forms based on me only working part time as a subcontractor/consultant for the last 5 years.  And how to prove that I can no longer work a 40+ hour a week job.  Truly I can't.  Much less perform the duties I used to. 

Per the on-line info I'm only supposed to get $750/month or so which makes no sense (or maybe it does as I'm older and have no dependents).  My daughter was receiving $1,900/month before she passed away 2 years ago (damn breast cancer) but she had 3 dependents.  I made a lot more $ - but no dependents.  Don't understand how these things are determined.

Am interested in others input.

Aaargh.

So sorry about your situation but - go for it.  Grab what you can!  We did pay for it afterall.

I have 4 medical conditions and apparently all 4 of these medical conditions are covered under ssdi or ssi.
I am waiting for some tests and another surgery to happen.
 I think though that the surgery won't have much of a affect on my other issues so the likely hood that I will apply will more then likely happen. The problem with me is I keep getting worse. 5 years ago I could handle all my issues just fine, now not so much. I've had to start seeing specialists and am constantly at the doctors.

I'm fully vested in the system too, as in I've received all of the work credits I need to get ssdi. I've been working since I was 16 so almost 20 years. I know some people work a lot more then that though.

As for you and breast cancer, I am sooo sorry you are going through this again. Then to lose a daughter to it too, I can't even imagine. I would go into a SSA office with all of your medical paperwork that you can get your hands on and have them help you apply. Setting up an appt to do this is what I would advise. Good luck with everything.

[rubybeth]

I'm curious about those of you who get help from the government.

I'm not here to judge, I'm genuinely curious as to how you qualify, medical conditions, how long you worked etc.

How does getting this assistance help you with retirement?

I'm going to assume that a lot of people who get this help have a spouse who works and pays the majority of their bills out of that paycheck. Considering that the government SSD or SSI is not usually that much from what I've read.
I know if it's SSD it can be much more because it is based on the workers earnings.

So who here gets assistance and how has it changed/impacted your life? Do you save it, do you have to use it pay bills? If you get money for the kids because you are on disability do you save their money?

Also if you want to give more detail on how you got approved, what your medical conditions are I wouldn't mind reading that either.

( I don't think I qualify, not sure though, and I haven't applied for any help, but I may in the future)

I don't, but my father is a social security disability representative (non-attorney), and helps people apply for benefits and go to social security court, if that becomes necessary. I would say that, for the most part, these benefits mainly keep people out of abject poverty, but don't help them become financially independent. Usually, the disability that they have means that they live in some type of misery the rest of their lives, and the funds they get often doesn't cover their full financial need, so they live with family or in a group home type situation. Getting approved for SSD is really complicated and typically people are denied on first application unless they very clearly meet a "listing," but many of his clients gave up on it at that point of first denial because they don't know any better, and only later learned they could appeal and potentially win back pay along with monthly benefits. The stories are often tragic. I could share many stories that would break your heart, but if you have further questions, I'd be happy to attempt to answer, or ask my father more specific questions.

[Miamoo]

Oh coffeelover - if you're fully vested and these 4 medical conditions aren't going to or may never go away, I say go for it - whatever it may be monetarily.  ?????  Are you employed at all now?  Whatever it may be, take the money and run.

I should have thought things out better for myself 5 years ago and applied then perhaps.  It was obvious to my employers at that time that I wasn't functioning to my previous mental capacity and physical ability - so I quit.  I was just too ashamed to claim disability.  Like being ashamed to claim food stamps or welfare when I was a single mom.  Long story.  Different story now.  Now, I'll grab what I can get while I can.  I have 40 years in.  I should get something.  Have to make that phone call.

[coffeelover]

Oh coffeelover - if you're fully vested and these 4 medical conditions aren't going to or may never go away, I say go for it - whatever it may be monetarily.  ?????  Are you employed at all now?  Whatever it may be, take the money and run.

I should have thought things out better for myself 5 years ago and applied then perhaps.  It was obvious to my employers at that time that I wasn't functioning to my previous mental capacity and physical ability - so I quit.  I was just too ashamed to claim disability.  Like being ashamed to claim food stamps or welfare when I was a single mom.  Long story.  Different story now.  Now, I'll grab what I can get while I can.  I have 40 years in.  I should get something.  Have to make that phone call.

I know I could apply but I want to see what happens when I meet with a new specialist on Monday. Plus I'm waiting on another doctor to call me back to discuss the surgery I need. That surgery will more then likely happen before the end of this year, if I say let's do it that is.

You need all of your medical records to back you up. I need to start getting copies of everything. My heart condition is one where I might be iffy on whether or not ssdi approves me or not. I have SVT, I've had 2 surgeries to fix it. Neither surgery fixed it 100% so I may or may not qualify with that one. I have no idea what the government will say once they look at all of my records.

So I guess what I'm saying is I want to give it more time, just to see what happens. More then likely I will try and apply by January 2015.

If you've got 40 years in and have medical conditions that qualify you then call. Make that appt do what you can to help yourself/family out.
edit: I am not employed now. I haven't worked since July 2013.

[coffeelover]

[/quote]

 
I don't, but my father is a social security disability representative (non-attorney), and helps people apply for benefits and go to social security court, if that becomes necessary. I would say that, for the most part, these benefits mainly keep people out of abject poverty, but don't help them become financially independent. Usually, the disability that they have means that they live in some type of misery the rest of their lives, and the funds they get often doesn't cover their full financial need, so they live with family or in a group home type situation. Getting approved for SSD is really complicated and typically people are denied on first application unless they very clearly meet a "listing," but many of his clients gave up on it at that point of first denial because they don't know any better, and only later learned they could appeal and potentially win back pay along with monthly benefits. The stories are often tragic. I could share many stories that would break your heart, but if you have further questions, I'd be happy to attempt to answer, or ask my father more specific questions.
[/quote]

That is interesting that SS provides a rep for clients. I didn't know they did this. I thought it was basically you hand over all of your information and they look it over. All fighting against you is how I was initially thinking.
I wonder if your father is the mediator per say.
 As in he is on no ones side. I just don't know how that would work since he works for SS. But he is representing the client and trying to help them. For example Is he told only 50% of his cases can get approved? etc etc. Just seems weird to me is all.

We are not in poverty, due to my husbands income. That is also why I feel I would get ssdi. I don't think at this time that I have any further questions, but thank you for offering. If I do think of something I would like advise on I may look you up in the future.

[scrubbyfish]

That is interesting that SS provides a rep for clients. I didn't know they did this. I thought it was basically you hand over all of your information and they look it over. All fighting against you is how I was initially thinking.
I wonder if your father is the mediator per say.
 As in he is on no ones side. I just don't know how that would work since he works for SS. But he is representing the client and trying to help them. For example Is he told only 50% of his cases can get approved? etc etc. Just seems weird to me is all.

Here we refer to these as disability case advocates (i.e., an advocate for a person, as opposed to an advocate for a cause). Here these are mostly volunteers, with a smattering of lawyers or folks with social work degrees too. If the position is funded at all (again, most are volunteer), it is usually funded through private donations or grants to a third party agency, definitely not by the agency or government department administering the financial aid.

If you are considering applying for a benefit, it is very, very, very worth seeing such an advocate or support person BEFORE making application to the program. As has been said in this thread, it is extremely easy to be denied support simply because you said the "wrong" thing, or got a crabby worker, or neglected to present a critical piece of information because you had no idea it was a critical piece of information. And so on. The advocate can best help you if you see them before contacting a potential support agency.

To address a couple of thoughts further up the thread, yes, some supports are income tested on the whole family's income, in which case a spouse's (or child's) income can make one ineligible, and some supports provide increased amounts per number of dependents (though that is usually capped, too).

[coffeelover]

That is interesting that SS provides a rep for clients. I didn't know they did this. I thought it was basically you hand over all of your information and they look it over. All fighting against you is how I was initially thinking.
I wonder if your father is the mediator per say.
 As in he is on no ones side. I just don't know how that would work since he works for SS. But he is representing the client and trying to help them. For example Is he told only 50% of his cases can get approved? etc etc. Just seems weird to me is all.

Here we refer to these as disability case advocates (i.e., an advocate for a person, as opposed to an advocate for a cause). Here these are mostly volunteers, with a smattering of lawyers or folks with social work degrees too. If the position is funded at all (again, most are volunteer), it is usually funded through private donations or grants to a third party agency, definitely not by the agency or government department administering the financial aid.

If you are considering applying for a benefit, it is very, very, very worth seeing such an advocate or support person BEFORE making application to the program. As has been said in this thread, it is extremely easy to be denied support simply because you said the "wrong" thing, or got a crabby worker, or neglected to present a critical piece of information because you had no idea it was a critical piece of information. And so on. The advocate can best help you if you see them before contacting a potential support agency.

To address a couple of thoughts further up the thread, yes, some supports are income tested on the whole family's income, in which case a spouse's (or child's) income can make one ineligible, and some supports provide increased amounts per number of dependents (though that is usually capped, too).

How would I go about finding an advocate, or support person with SS? I would like to get advice from somebody familiar with this system to see if it's even worth it for me to apply.

[rubybeth]

That is interesting that SS provides a rep for clients. I didn't know they did this. I thought it was basically you hand over all of your information and they look it over. All fighting against you is how I was initially thinking. I wonder if your father is the mediator per say. As in he is on no ones side. I just don't know how that would work since he works for SS. But he is representing the client and trying to help them. For example Is he told only 50% of his cases can get approved? etc etc. Just seems weird to me is all.

We are not in poverty, due to my husbands income. That is also why I feel I would get ssdi. I don't think at this time that I have any further questions, but thank you for offering. If I do think of something I would like advise on I may look you up in the future.

No, sorry, I didn't explain that well. The Social Security Administration does *not* provide a rep for clients. He does not work for the Social Security Administration. My dad gets hired by clients, and his payment is a limited percentage of their back pay, if they receive back pay. No back pay? No pay for my dad, but he has helped clients get benefits even though it has meant no paycheck for him. My father has his own LLC and works out of his home. Other disability reps may work in an office, or they may be laywers. These representatives definitely takes sides with their clients, and I know that my dad does the work needed in order to get the necessary medical documentation together, helping clients complete any necessary forms, etc. in the application process. He would likely strongly encourage you to get representation *before* applying, to make sure you cross your Ts and dot your Is, and make sure all of your medical documentation is in order to "meet a listing" so that you can get benefits on the first attempt, instead of needing to go to social security court (in which case, you may get a bad judge or medical expert who blow holes in your case).

The National Association of Disability Representatives, or NADR, is their professional organization, and there are resources on their website to find a representative in your area: http://www.nadr.org/

Good luck!!

[SwordGuy]

I know someone who made out really good. Lied & cheated on his taxes so he didn't pay in & works full time under the table. I review incomes and lots of people are making lots of money off the system. And we wonder what is wrong with the system. No offense to the legits I have just never known any. I live in a part where DDSI pays better than jobs so why not.

Turn them in to the IRS for tax fraud and you'll get a cut of what they end up paying.

It's a win-win for everyone that matters. :)

[SwordGuy]

As to the original question, my wife's daughter from her first marriage (and now our joint ward) has Down's Syndrome.   She is 41 and functions about on a 4 to 5 year old level.   She used to receive SSI and now that her biological father is on SS, she gets SSD.  She receives $577 a month plus medicare.  She also has someone watch her for about 6 hours a day, 5 days  a week while we are at work.  While she was on SSI we had to make sure she didn't accumulate any wealth or she would lose the SSI and (more importantly) the health coverage.  Crazy, but that's the way it was. 

We cannot get her covered on any employer-supplied health insurance of ours, she's been too old for that for a long time.   

It used to cost us about $1200 a month to pay to have someone watch over her while we were at work.   We couldn't put her in most daycares because of her age and their insurance policies.

Both the health insurance and the person watching her during the day are a God send.   The $577 is nice but not essential for us at our income level.  It covers food, clothing, miscellaneous expenses for her, and additional time to watch over her when we can't or when we (and she) just need a break from each other.

My wife, my daughter and I have to save enough for 4 retirements.   1  of the normal length of time for each of us, plus 1 more for our daughter because she'll outlive us by several decades.  We want to make sure she isn't a financial burden on her brother.

Without the benefits she receives it would be much more difficult for us to do so.  For folks with a median family income it would be truly difficult.

Unless we as a society choose to kill off children like her (like the ancient Spartans or the modern-day Nazis did), we either have to burden an unlucky family with her full upkeep or the state has to take responsibility for her once she reaches 18.   We provide care for her for 18 hours a day 5 days a week and 24 hours a day the other 2 days a week.   Plus we provide her with a place to stay.   It's less expensive for the state to do it this way than it is to take care of her 24/7.

I read John Rawl's "A Theory of Justice" many decades ago and I still believe he had the right idea.   This set-up is fully consistent with it.

[scrubbyfish]

How would I go about finding an advocate, or support person with SS? I would like to get advice from somebody familiar with this system to see if it's even worth it for me to apply.

Again, I can really only speak to the scoop in Canada, because that's all I'm familiar with, but I think there are enough similarities to get you somewhere...

In Canada, there are at least two options:

1. A free advocate through an advocacy agency. We would just Google "welfare advocate [city]" or see povnet.org's Find an Advocate or go to an agency that serves folks with your particular disability, e.g., Brain Injury Association or Paraplegia Association, and see if they offer advocacy (many here do).

2. The approach rubybeth's dad offers: Private workers who do the work then take a cut of the first lump sum (retroactive payment) you receive, if you receive one (and no charge if you don't). Some advocates are opposed to this; I think they want to see every penny stay with the recipient, but with not enough funding anymore to the non-profit agencies, and people potentially going without as a result, I think this approach also rocks. To find this, in Canada we would just Google something like "help with disability application [city]".

I don't know what the first option is called in the States (still advocacy? or another term?), but free is awesome in these situations. However, where free is not available, I'm a big fan of the second option too.

Even if you go with the first, you might consider donating a portion of a retroactive/lump sum benefit so the organization can help others subsequently. (Here, agencies have been experiencing deeper and deeper funding cuts, so contributions are critically important.)

[rubybeth]

How would I go about finding an advocate, or support person with SS? I would like to get advice from somebody familiar with this system to see if it's even worth it for me to apply.

Again, I can really only speak to the scoop in Canada, because that's all I'm familiar with, but I think there are enough similarities to get you somewhere...

In Canada, there are at least two options:

1. A free advocate through an advocacy agency. We would just Google "welfare advocate [city]" or see povnet.org's Find an Advocate or go to an agency that serves folks with your particular disability, e.g., Brain Injury Association or Paraplegia Association, and see if they offer advocacy (many here do).

2. The approach rubybeth's dad offers: Private workers who do the work then take a cut of the first lump sum (retroactive payment) you receive, if you receive one (and no charge if you don't). Some advocates are opposed to this; I think they want to see every penny stay with the recipient, but with not enough funding anymore to the non-profit agencies, and people potentially going without as a result, I think this approach also rocks. To find this, in Canada we would just Google something like "help with disability application [city]".

I don't know what the first option is called in the States (still advocacy? or another term?), but free is awesome in these situations. However, where free is not available, I'm a big fan of the second option too.

Even if you go with the first, you might consider donating a portion of a retroactive/lump sum benefit so the organization can help others subsequently. (Here, agencies have been experiencing deeper and deeper funding cuts, so contributions are critically important.)

I'm confused, coffeelover, are you in the US or in Canada? The two systems sound very different, so if you're in Canada, my information on what my father does would likely not be relevant and you should take scrubbyfish's info. However, if you're in the US, I don't think scrubbyfish's info. will be helpful because, as far as I know, there are no advocates for applicants.

[scrubbyfish]

...if you're in Canada, my information on what my father does would likely not be relevant...

The info on what your dad does would be super relevant to people in Canada (see Option #2 set out above) -they would just do a different internet search to find local support- and I suspect there may well be advocates in the States too (but by what title, I don't know). Many people in Canada have no idea advocates exist -best kept secret! Folks here are anguished when they learn after struggling that advocates exist. (When I write here, I'm writing hopefully for the benefit of coffeelover and anyone else in the USA needing help, but also for anyone anywhere else in the world, so I'm aiming to present the wide picture for everyone reading.)

[coffeelover]

How would I go about finding an advocate, or support person with SS? I would like to get advice from somebody familiar with this system to see if it's even worth it for me to apply.

Again, I can really only speak to the scoop in Canada, because that's all I'm familiar with, but I think there are enough similarities to get you somewhere...

In Canada, there are at least two options:

1. A free advocate through an advocacy agency. We would just Google "welfare advocate [city]" or see povnet.org's Find an Advocate or go to an agency that serves folks with your particular disability, e.g., Brain Injury Association or Paraplegia Association, and see if they offer advocacy (many here do).

2. The approach rubybeth's dad offers: Private workers who do the work then take a cut of the first lump sum (retroactive payment) you receive, if you receive one (and no charge if you don't). Some advocates are opposed to this; I think they want to see every penny stay with the recipient, but with not enough funding anymore to the non-profit agencies, and people potentially going without as a result, I think this approach also rocks. To find this, in Canada we would just Google something like "help with disability application [city]".

I don't know what the first option is called in the States (still advocacy? or another term?), but free is awesome in these situations. However, where free is not available, I'm a big fan of the second option too.

Even if you go with the first, you might consider donating a portion of a retroactive/lump sum benefit so the organization can help others subsequently. (Here, agencies have been experiencing deeper and deeper funding cuts, so contributions are critically important.)

I'm confused, coffeelover, are you in the US or in Canada? The two systems sound very different, so if you're in Canada, my information on what my father does would likely not be relevant and you should take scrubbyfish's info. However, if you're in the US, I don't think scrubbyfish's info. will be helpful because, as far as I know, there are no advocates for applicants.

I'm in the US, Michigan to be exact. Can your father represent me? Slightly kidding... haha.
I"m going to look further into the website you provided and do some contacting this week. Thank you for your help, I do appreciate it. Although I wasn't originally looking for help when I first posted this thread. :)

[coffeelover]

As to the original question, my wife's daughter from her first marriage (and now our joint ward) has Down's Syndrome.   She is 41 and functions about on a 4 to 5 year old level.   She used to receive SSI and now that her biological father is on SS, she gets SSD.  She receives $577 a month plus medicare.  She also has someone watch her for about 6 hours a day, 5 days  a week while we are at work.  While she was on SSI we had to make sure she didn't accumulate any wealth or she would lose the SSI and (more importantly) the health coverage.  Crazy, but that's the way it was. 

We cannot get her covered on any employer-supplied health insurance of ours, she's been too old for that for a long time.   

It used to cost us about $1200 a month to pay to have someone watch over her while we were at work.   We couldn't put her in most daycares because of her age and their insurance policies.

Both the health insurance and the person watching her during the day are a God send.   The $577 is nice but not essential for us at our income level.  It covers food, clothing, miscellaneous expenses for her, and additional time to watch over her when we can't or when we (and she) just need a break from each other.

My wife, my daughter and I have to save enough for 4 retirements.   1  of the normal length of time for each of us, plus 1 more for our daughter because she'll outlive us by several decades.  We want to make sure she isn't a financial burden on her brother.

Without the benefits she receives it would be much more difficult for us to do so.  For folks with a median family income it would be truly difficult.

Unless we as a society choose to kill off children like her (like the ancient Spartans or the modern-day Nazis did), we either have to burden an unlucky family with her full upkeep or the state has to take responsibility for her once she reaches 18.   We provide care for her for 18 hours a day 5 days a week and 24 hours a day the other 2 days a week.   Plus we provide her with a place to stay.   It's less expensive for the state to do it this way than it is to take care of her 24/7.

I read John Rawl's "A Theory of Justice" many decades ago and I still believe he had the right idea.   This set-up is fully consistent with it.

I couldn't even imagine taking care of a 'child' for the rest of my life, even into retirement.

 I know this is what we sign up for when we have kids, because the risk is there and we may not all have healthy children.


But man, you guys are just awesome!

 I couldn't imagine the stress of taking care of an adult who has the mind of a child every day of your life. The patience you and your wife must have.... I'm no saint when it comes to patience with my kids.. need to change that. It's something i'm always striving for.
 Anyways, just wanted to acknowledge you and let you know that I think you and your wife are pretty awesome.

[SwordGuy]

I couldn't even imagine taking care of a 'child' for the rest of my life, even into retirement.

I know this is what we sign up for when we have kids, because the risk is there and we may not all have healthy children.

But man, you guys are just awesome!

 I couldn't imagine the stress of taking care of an adult who has the mind of a child every day of your life. The patience you and your wife must have.... I'm no saint when it comes to patience with my kids.. need to change that. It's something i'm always striving for.
 Anyways, just wanted to acknowledge you and let you know that I think you and your wife are pretty awesome.

You're very kind.   Our daughter is great.    We have it truly, truly, spectacularly easy compared to some parents of handicapped kids.    I don't know how they do it at all. 

[rubybeth]

I'm in the US, Michigan to be exact. Can your father represent me? Slightly kidding... haha.
I"m going to look further into the website you provided and do some contacting this week. Thank you for your help, I do appreciate it. Although I wasn't originally looking for help when I first posted this thread. :)

I wish he could, coffeelover! He's got a great track record of winning cases, but that's partially because he's pretty honest with potential clients up front about their chances of winning benefits. It's a pretty terrible system that's set up to basically deny people the benefits they deserve, at a time when they need them most. I can ask him if he knows of anyone in Michigan who is especially good... he's a pretty active member of NADR, and they have a forum similar to this one to share ideas and get advice from other professionals, plus he attends the annual conference. I can PM you if I find out anything. :)

[coffeelover]

I'm in the US, Michigan to be exact. Can your father represent me? Slightly kidding... haha.
I"m going to look further into the website you provided and do some contacting this week. Thank you for your help, I do appreciate it. Although I wasn't originally looking for help when I first posted this thread. :)

I wish he could, coffeelover! He's got a great track record of winning cases, but that's partially because he's pretty honest with potential clients up front about their chances of winning benefits. It's a pretty terrible system that's set up to basically deny people the benefits they deserve, at a time when they need them most. I can ask him if he knows of anyone in Michigan who is especially good... he's a pretty active member of NADR, and they have a forum similar to this one to share ideas and get advice from other professionals, plus he attends the annual conference. I can PM you if I find out anything. :)

Please do PM me if your father does recommend someone. Because of this thread I will be looking into getting an advocate and seeing if getting benefits is possible for me.
Thanks so much!

[Pooperman]

SO is on SSDI and SSI. Disabled at birth (CP) means no entry level positions possible (not disabled enough for a wheelchair but too disabled to be on feet for long periods of time). Received SSDI since birth (the joys of being very premature and surviving). It's about $550/mo. SSI is basically nothing, but comes with medicaid so her medications cost next to nothing instead of a lot. The $2000 asset limit needs to be skirted until we marry. At 18, she had to reapply for SSDI, which she did and was denied first try. Lawyer involved, was given SSDI about 6 months after first application. The $550 goes to: Cell phone ($65), Food ($300), Hobby ($50), Night out ($25).... (total: $440, extra saved).

[coffeelover]

SO is on SSDI and SSI. Disabled at birth (CP) means no entry level positions possible (not disabled enough for a wheelchair but too disabled to be on feet for long periods of time). Received SSDI since birth (the joys of being very premature and surviving). It's about $550/mo. SSI is basically nothing, but comes with medicaid so her medications cost next to nothing instead of a lot. The $2000 asset limit needs to be skirted until we marry. At 18, she had to reapply for SSDI, which she did and was denied first try. Lawyer involved, was given SSDI about 6 months after first application. The $550 goes to: Cell phone ($65), Food ($300), Hobby ($50), Night out ($25).... (total: $440, extra saved).

I"m a little confused and don't mean to sound judgy at all.

How is your SO getting both ssi and ssdi?

I thought it was basically one or the other. SSI is for those who have very low income or no income.

SSDI is for those who have worked enough credits and/or their spouse/household makes to much to qualify for SSI.

I know some states will supplement the SSI, is that what is happening in this case?

[Pooperman]

SO is on SSDI and SSI. Disabled at birth (CP) means no entry level positions possible (not disabled enough for a wheelchair but too disabled to be on feet for long periods of time). Received SSDI since birth (the joys of being very premature and surviving). It's about $550/mo. SSI is basically nothing, but comes with medicaid so her medications cost next to nothing instead of a lot. The $2000 asset limit needs to be skirted until we marry. At 18, she had to reapply for SSDI, which she did and was denied first try. Lawyer involved, was given SSDI about 6 months after first application. The $550 goes to: Cell phone ($65), Food ($300), Hobby ($50), Night out ($25).... (total: $440, extra saved).

I"m a little confused and don't mean to sound judgy at all.

How is your SO getting both ssi and ssdi?

I thought it was basically one or the other. SSI is for those who have very low income or no income.

SSDI is for those who have worked enough credits and/or their spouse/household makes to much to qualify for SSI.

I know some states will supplement the SSI, is that what is happening in this case?

SO primarily gets SSDI but the SSDI is low, and SSI supplements beyond that. We live in a fairly high COL area (which matters). The SSDI is based off of her father since she never worked and will never work more than part time due to her disability. I hope this makes sense.