And other rants...
I started paying taxes when I was 14 at a summer job and worked throughout the rest of my high school years, in my senior year working two part time jobs. I've worked consistently and hard ever since - the longest time without a job before I became disabled was after being laid off when the company I was working for went bankrupt & I collected unemployment for 5 months. I didn't linger on public assistance and the only thing I feel entitled to is receiving the benefits that I paid into the social security system - it is social security INSURANCE after all.
in·sur·ance noun
1. a practice or arrangement by which a company or government agency provides a guarantee of compensation for specified loss, damage, illness, or death in return for payment of a premium.
But instead, the government took 5 long years to finally approve my disability claim, denying it again and again despite multiple doctors disagreeing with them. How many people can afford to pay their bills for 5 years without an income? I couldn't. This resulted in multiple evictions and a credit rating that was so bad I couldn't even open a credit union account. I sold everything I could, including, eventually, my car. When I was finally approved for disability benefits, every penny that I received from food stamps over the years I spent waiting was paid back - and I am ok with that. Although, that money (About $6,000 I think) would have been enough to get a car again and become more independent from the government but instead it was given back to the system - and there are countless examples of
how wasteful the government is with funds (according to this source
nearly $30 billion was wasted in 2013 - that's billion with a B!) Yet, so many people complain than the needy & "entitled" people are draining the system and the cause of our deficit. *sigh*
When my monthly disability check kicked in, I no longer qualified to receive AHCCCS, despite there being a 24 month waiting period from the governments "date of disability" (which doesn't start until 6 months after the date the Doctors declare permanent disability)
for medicare to kick in. So, for 30 months, someone who the government acknowledges is disabled (and therefore, logically, in need of ongoing and expensive medical services) is left to fend for themselves - and more than likely with horrible credit. My situation is far from unique, the SSA says it takes an average of about 2 years for a claim to be approved - that is if they approve it the first time, which basically only happens any faster when you are on your death bed.
Lack of affordable health care is still preventing me from getting the treatment I need and I am far from the only one. In 1998
this woman was charged more than $50,000 for one of the procedures recommended for me by the neurosurgeon-
a laminectomy, and in 2008
this guy avoided the $75,000-$100,000 it would have cost to get the
multi-level lumbar disc replacement surgery that the the orthopedic surgeon recommended for me - by being part of a medical study for the experimental discs. Those are just two handiest examples of countless others going through this or worse.
I finally (with much assistance from Kendra at Representative Ron Barber's office) got medi
caid pushed through and back dated to January 1st, 2014 (which has little impact considering the surgeons wouldn't even schedule an appointment until I had Insurance). I finally got in to see the spinal surgeon on February 24 and on March 1st my medi
care kicked in. Apparently this happens automatically (and they deduct the premium automatically) if you don't mail them back the card saying you don't want it. The fact that I can not get to the mailbox in my wheelchair makes that difficult and now if I cancel it there is a penalty. I don't know what the penalty would be yet because the number that is supposed to answer these questions has had a message for the last 2 days stating they are unable to take calls due to technical difficulties and the day before that they hung up on me several times after waiting on hold. There is program that if I can work they will let me keep both insurances and pay the premium. They're main # is also unavailable due to technical difficulties. I called their non-toll free number & left a message.
*
Having medicare makes receiving health care much LESS attainable in my circumstances - the math of someone on a fixed income (not just me, but true for so many marginalized populations, your parents and grandparents, disabled veterans) paying 20% of their surgeries and hospitalizations, not to mention monthly prescription costs and specialist co-pays....granted, math isn't my strong suit, but because the premium is 10% of my income , my rent is 50% of my income, and since I'm not medically cleared to lift more than 5 pounds I have to pay to have groceries delivered - not cheap, plus utilities and I do choose to spend on internet, but no cable. As it is, I was living paycheck to paycheck and now that the premium has been deducted automatically, this means calls to the utility company to request an extension and that the groceries I bought at the beginning of the month have to last until my April check comes in.
With a lot of effort I can shower twice a week now - up from once a week. Still can't do laundry. I have 4 pair of pants that fit enough not to fall down too much and they haven't been clean in awhile. Since I got out of the hospital on January 27th to be exact. A friend and neighbor went out of her way to insure that I came home to clean dishes & laundry in addition to taking care of my dear Charly & Glitch while I was in the hospital.
My doctor referred me to a home health care place which can provide medical equipment to make maneuvering in a wheel chair easier, but also a portable ramp that would allow me to traverse the steps and go for a "roll". The other important thing that has been Doctor recommended since last April - shower bars. I managed to spend my savings on a shower chair, cane and grabber, but that in addition to my chiropractic bills & the veterinarian bills for Charly have left me without the option to pay for those things out of pocket anymore. If it hadn't been for a friend giving me a wheelchair then I would be much worse off. But the bottom line is, had it been handled appropriately, I would have had my insurance on January 1st and would have made some actual progress - I think I could have at least gotten the recommended epidural shot before it switched to Medicare since it took about a month to schedule through Indian Health (after many, many calls - they originally set it for August and even though I would have to go to a medical center 2 hours away for the procedure, they could set it up 6 weeks sooner than through the Orthopedic Institute. There is a fair chance that the epidural shot would relieve enough of the symptoms to delay having surgery, although it wouldn't solve any of the structural damage to the discs, it would reduce the nerve inflammation enough that it wouldn't be compressing the nerve that limits my ability to stand and I could regain a decent amount of function.
The spinal surgeon confirmed what my PCP told me, that the feeling I have already lost in my left leg is gone forever and there is nothing they can do to get it back. Eventually the compression of the L4 sciatic nerve would cause the same permanent damage to the nerve that allows me to stand (which is already shaky & my leg drops like a ton a bricks with no warning). Hmmm, permanent nerve damage that prevents standing or feeling -what's that called again? Oh, yeah,
permanent paralysis!
According to ALTCS (a program for long term health care issues designed to help people who fall off of medicaid but still have medical needs) I don't qualify for help from them either because , although I can not safely reach or stand things in the kitchen to prepare food the representative sat in my living room and said "It doesn't matter if you can't reach food to prepare it, as long as you can lift a spoon from the plate to your mouth" they can't cover me.
(Luckily?) I rarely have visitors and of the handful (well, I think 5 would be a handful and I've had four regular visitors, so handful-ish) that I have had over the last 6 weeks , I've known two for a decade and two for more than 6 years. Thankfully, they care enough *not* to care how dirty and smelly my clothes are.
I've lost one visitor for good - the one who called me
"Love Bug" and as hard as it is to further diminish my social circle, (and my ego boosts) he had been lying about a pretty important thing - the state of his marriage. When I figured that important detail out everything changed. As of yesterday I told him not to contact me anymore and go to counseling with his wife. I am SO ready to break the pattern of falling for unavailable men and I look forward to the day when I can easily go out in the world, which I'm convinced will drastically increase my chances of meeting one versus not being stuck in my apartment.
One of my neighbors has been walking my dog for the last week which is great, Charly needs to get out and I certainly can't take her. The challenge has been that the time she can walk her is about 10am and I'm still not getting to sleep before dawn-ish.
*Got a call back and I spoke to a representative about the "Freedom to Work" (FTW) program - which would allow me to keep both AHCCCS (our state version of medicaid) AND medicare. It would also cover my premium & whatever my co-insurance would be. However, she wouldn't give me a minimum amount of hours I need to work to qualify, and it took several minutes of asking the same question - how do I know how much tax to pay- to get an answer. She kept talking around my questions and told me I would have to estimate it, finally she said that I had to pay 10% of whatever income I earned to the IRS in quarterly taxes - submit the ledger of my hours, money order for paying 3 months of taxes and the month after I began paying taxes on this income then the FTW benefits would kick in. She did confirm that the book contract I signed
doesn't count as employment and said there was no assistance/guidance to help people become self-employed (which I had heard there was).
TL;DR:
If I could get the treatment I need then I would be able to work enough to qualify to get the medical treatment I need to be able to work. Quite the catch-22 the system has in place.
