Icky personal details and huge vent
OK, so I try not to vent much in my blog. It's a happy place. But I'm not in a happy mood today. I'm in a pissed-off, people-are-idiots mood.
Embarrassing personal background details so you can understand why I am justified in calling these people idiots: I'm disabled with fibromyalgia (tired and in pain all the time), diabetes, and diabetic neuropathy (nasty nerve pain that drugs don't help). I have two wonderful teenagers who also have disabilities. Son #1 has Asperger syndrome (a form of autism), and son #2 has Asperger syndrome, Klinefelter syndrome, and ADHD. So, yeah, we're not a boring family. Laughter is our best friend and helps us deal.
Anyway, I was on long-term disability until it ran out in October. Long story short, I applied and was approved for TANF (welfare) until my Social Security kicks in (*on knees praying*). As part of Maine's welfare program, everyone is required to attend mandatory meetings with a state-funded "employment agency." OK, can I first say that if you're so desperate that you are willing to jump through red-tape flaming hoops to get TANF (at approx. $480 a month for 3 people plus food stamps), you've already applied for every job known to man or you aren't able to work. Period. OK, to be honest, I gave up my $45K a year job JUST TO SIT ON MY ASS AND WATCH OPRAH. Seriously, I'm lazy like that. I gave up the job I got by attending night school for 9 months, my dream job, working at home even. Yeah, that's it.
So I got a letter about my mandatory appointment with this "employment agency." I called my Aspire worker (the agency within the Department of Human Services trying to get all welfare recipients to work) and asked her why I had to go to this meeting since I am disabled and so are my children.
Her answer? "They make sure you are doing what you are supposed to and help you get SSI."
My response? "I applied for SSI 2-1/2 years ago, and I'm just waiting for my hearing date now."
Her response? "Oh, well, do you have a lawyer?"
Me: "Yes."
Her: "Oh, well, they can help you get services for your children."
Me: "My children already have services. They have their own therapists, psych nurses, and psychiatrists."
Her: "Well, I'm sorry, but it's mandatory."
*Sigh*. You know, I'm sure somewhere down the line someone in the state government thought this was a good idea. Probably. I'm trying to think positively here. It's not bad enough that we have 3-4 appointments a week, but now I have to go sit with this woman every two weeks so we can, what, stare at each other? Puh-lease.
I was told about a county program that deals with autism by a few people. I called there today, thinking they could actually provide information and services. *Insert insane laughter here* They're another same-old same-old case management agency that can "refer you to services available for you in the area." This is actually code for "there's government money available, and we're gonna get it by providing no real services whatsoever."
Let me clue you in to a not-so-well-known fact: A parent with a disabled child or children (especially a teenager) already knows what services are available. We don't sit around on our asses picking our noses. Well, only sometimes. Most of the time we are searching every avenue for a way to help our children. No matter what you try to make us think, there aren't that many services out there. Don't refer us to another agency, because they'll tell us the same thing you already did. Just because a parent is on welfare and/or has a disabled child, that doesn't mean we are of lower intelligence. Don't talk down to us. Don't assume we are idiots. Don't assume this is our first rodeo.
And a special note to those fine folks who look down on people who get welfare: Not everyone applying for welfare is a deadbeat bum. Many of us have fallen on hard times, and we need help to pull ourselves back up. We aren't looking for a free handout. We just need a way to keep our families warm and fed until we can get back on our feet. I'd like to bring this up again: I did not give up a career working at home making $45K a year just to "live off the state." Get a fucking clue you idiots. I had to give up my brand new Jeep, my credit cards, my career. My health is gone. I don't have one pain-free day, ever. Because of assumptions by people who don't have a clue, families needing help have to wait through a 30-day waiting period to get welfare. What do they do for those 30 days with no income and no savings? Think about that a minute. What about those people applying for Social Security Disability? I've been waiting for 2-1/2 years for a decision. How is that helping anyone? It sure isn't helping me.
And think about this a minute: We're not talking about getting rich, or even getting by. We're talking about barely enough money to pay for a place to live and food. That's it. If you're lucky, maybe you can afford internet access. But going out to a restaurant is a thing of the past. Want to go to a movie? Forgetaboutit. Need a new car? Tough shit. Want the security of a savings account? Sorry, you can't have one. They count that against you as income. Wake up and smell the coffee, and maybe open your eyes and see what's really going on.
Comments
I can't even say anything else... I don't know whether to laugh, cry or applaud you. I guess all I can say is good luck and I'll be sending positive thoughts your way.
Good luck!
Isn't it so frustrating, the wait that some meritorious claimants have to go through to prove that they are truly disabled from working at any job, in order to be eligible for their SSD. I see this all of the time and am thrilled when the lower levels of the process (SSA/DDS), prior to ALJ level, actually really thoughtfully review the materials and arguments submitted and understand the claimant's actual limitations. It does happen! Fibromyalgia, unfortunately, is not generally one of the ailments that pass muster too quickly, probably b/c the medical evidence submitted early on proves little beyond 'claims' plus the fact that (some believe) there may be an unofficial policy in a particular office to deny FM claims...(Remember, the problem with FM is that there really are no diagnostic tests that prove there is a medical problem, not because the illness does not exist (in my opinion) but b/c the medical establishment just hasn't figured it out yet). I do understand that there are a significant number of claimant's who 'have disabilities' but are not unable to work at any job whatsoever. These ineligible people (who are not necessarily committing fraud mind you), generally don't understand that SSD and SSI programs are not for those merely with disabilities (else we'd all be eligible and no one would be working) but for those with such 'disabling disabilities' that they simply are unable to do any job 40 hours/week (not just their old job or a high paying job, but any job, no matter how simple or sedentary). And then, of course, there are the truly lazy (let's face it, there are plenty of scheisters out there), for whom the whopping $620+ they will receive if they can pull the wool over the eyes of the system and taxpayers is like winning the lottery (for them, it is 'free' money every month, like the lotttery). Unfortunately, it is this last category, as well as the innocent but clueless prior category aforementioned, that makes the process a nightmare for people like you who need and deserve and are eligible for (if someone in SSA/DDS would have just provided adequate consideration) their hard-earned benefits and SSI, as the case may be.
I wish you great luck with your ALJ hearing and I hope your representative has made sure that (if possible) your evidence confirms (expressly, not assumed) that you can not perform the activities needed to work a job, full time. If your evidence is there, I generally have found that the ALJs (generally, yet again) are conscientious and professional and thorough and if the proof is there (not just allegations of course), they will properly grant the award. And while the wait is horrendous! thankfully you do not lose those months of benefits during which the SSA was not granting you the award you deserve. Unfortunately, they do not pay interest on your back benefits, and so the delay actually 'earns' money for Uncle Sam, while depriving you of interest on your own money (which it will be proven to have been when you win your award). Some believe, including me, that this ability for the governement to earn interest on your money while you go into bankruptcy (happens all the time) provides it with a great incentive to take its time in getting your case through the checks and balances before the award.
As a disability attorney, I find many frustrations with the system. We too get screwed often times, with the adjudicators, after granting the awards we worked very hard for, putting off the review of the fee (particuarly if a fee petition) for up to a year or more, thus, causing us to not get paid for the years of work and expense put in on the case on behalf of our clients, and causing us financial worries as well (mortgage must get paid, etc). And of course, the governement is earning interest on the client's money that was withheld to pay the fee, while they are not sending it to the representative to which is owed. It really is incredible, the lack of effective legal limitations on the amount of delay permitted.
Anyway, some food for thought, now let me get myself back to work. Hang in there! Your day will come!
Stephanie Joy, Esq.
Luckily, I did complete a functional assessment proving that I cannot work. It is very frustrating having a self-reported illness.
It is incredibly frustrating that we have no choice but to pay Social Security taxes on our income. But then when the time comes that we need to access those benefits due to a disability, they aren't readily available.