Taking Care of Our Most Vulnerable...

After dinner, Asher and I went on our daily outing to the mailbox, in anticipation of the arrival of perhaps another holiday card bringing holiday cheer. We did get a card full of cheer.

However, I also received a notice from the County Assistance Office letting me know that as of January 1, 2008 my food stamp allotment would be reduced from $40 a month to $34 a month. Just three months ago, in October of this year, my food stamps increased from $31 to $40 a month. Who can adequately sustain and nourish themselves on any of these amounts?

The reason for the DECREASE in the monthly allotment? As stated in the notice: "Your food stamp benefits will change based on the 2.3% Cost of Living Adjustment (COLA) that you will receive in your Social Security benefits and/or your Supplemental Security Income in January 2008.

Let's take note of that 2.3% increase in Supplemental Security Income (SSI) that I receive. (Note: I receive SSI and Medical Assistance (not Medicare) because I became sick right out of college and did not 'pay into the system' long enough to receive SSDI benefits and Medicare).

In 2007, my monthly income from the Federal government was $623. That 2.3% raise amounts to a whopping $14 a month more in income, for a grand total of $637 starting January 1, 2008.

Now, my food stamps have been 'adjusted' based on this raise. Do the math. Now my monthly increase is $8. What will I ever do with all that extra money?

I also received $27.40 per month in 2007 from the State government. I have yet to receive notice of a change in that figure. Should be in the mail soon, surely filling me with holiday joy.

Okay, so I don't usually discuss money on my blog or very publicly. Even some of my close friends know very little about the actual expenses and financial binds disability creates.

I was so completely outraged tonight though, that I felt compelled to write, compelled to speak up. While I try not to discuss money and politics, I realized that not sharing this story would be hiding part of myself. I know that many of my friends and I disagree politically, so I try to be more neutral on my blog. I realized, however, that part of the reason I am blogging now is to be authentically me. So, I'm taking a risk and stepping out of my box. I'm not asking my friends to agree with me, I'm just voicing what I feel.

I have searched and searched for the famous quote that discusses that we must judge ourselves as a society not by our wealthiest members but by how we care for those most unable to care for themselves. The closest I have found is this:

The test of our progress is not whether we add more to the abundance of those who have much it is whether we provide enough for those who have little. --Franklin D. Roosevelt--

If you know the quote I'm looking for, let me know!

On a societal level, I believe that it is our responsibility as citizens of this world, as human beings to provide for those who cannot provide for themselves. We all deserve health care, affordable housing, food, and education to name a few!

Most of you know where I stand politically, but to me this isn't a political topic. It's simply what we as human beings owe each other.

On a personal level, the entire situation terrifies me. In my fights for Medical Assistance to pay for Lyrica and Ambien, I have discussed my frustration with health care (or lack thereof). But, I have not discussed the issue of SSI.

I live in absolute fear. Maybe I need to let go, trust in God, trust in humanity, but I'm always scared. Because I have SSI rather than SSDI, I cannot have ANY assets of my own. This means that if I try to save money it would need to be 'hidden' in another person's name. It means that if my parents die and leave me assets the government will immediately take away my MA/health care. (If you receive SSDI,on the other hand, you can have assets.)

I know that I am incredibly fortunate, but so many others are not. Still, I also know that just as I didn't get a 'free pass' in life from illness, I don't get a 'free pass' from poverty either. Every time I donate to Good Will, I know that it could be me who needs those goods. When we donate to the food bank, I know that it could be me who needs that food. I am not 'special' or 'chosen', I'm just simply lucky right now.

I also know that my parents are generous, self-sacrificing human beings who have worked so hard to provide for me and have done all that they can to ensure that if I am disabled and unable to work for the rest of my life, they have tried to prepare. They have tried to prepare by putting the money they have saved in a trust, which the government cannot take away.

A trust, however, means that I will NEVER have financial freedom. I am dependent on those in charge of the trust to dole out monthly payments to me. Even with a trust, the government can say that I have too many assets and take away my Medical Assistance. As a side note, I thankfully have the best of people taking care of me and they will never hurt me or take the money for themselves.

The thought that even with a trust I may not be protected terrifies me. No health care plan would cover me. And any money left to me would be quickly depleted by medical expenses.

We know for a fact that one of the top reasons people file for bankruptcy in this country is because they cannot pay their medical bills.

Maybe it's a waste of energy to be afraid of what will happen to me. Maybe it's not helping anyone that I feel tremendous guilt for what I do have.

All I know, is that while I live comfortably because I am fortunate to have a team of family members holding me up, I'm easily one step away from not being so fortunate. While I'm warm and toasty with a full belly and the best health care I can get, someone else is not. And that could be me. That's a haunting thought with which I find hard to live.

Sadly, with the combination of MA and SSI, I think I actually come in slightly above poverty level--because most people living in poverty have no insurance at all.

Also, I live at home with my mom. When I finally won my fight for SSI, we had to go to the Social Security office and agree that I would pay my mom $200 a month in rent. She had to sign a paper saying that if I did not pay, she would evict me! (Um, where else was I going to live that I could afford not to mention have someone take care of me?) I pay my mom more than $200 in rent, but how much of a dent does it really make in maintaining this household? Not a whole heck of a lot.

It's hard to feel as if any of the money I spend or the things I have are really 'mine.' I feel like they are my parent's. I feel as if when I spend money I'm really spending their money to buy a gift for a friend or to buy that new pair of jeans I've been pining for. Should I be signing the gifts from them?

My Dad, Mom and Abbie never hold me accountable for every dollar I spend, but in many ways they know where every dollar goes. And they NEVER make me feel guilty--in fact Abbie has expressed sadness that I feel so much guilt (yes, I got a good stepmom). My Dad promises me I will be okay. My Mom promises me that when she had a child, she became a mom forever--and that includes taking care of me now even though it wasn't what any of us hoped for or expected. I love them for this generosity and sacrifice.

I'm scared of what will happen to me in the future. And I'm incredibly heartbroken for all of the folks who are not as fortunate as I am.

Who are we if we don't take care of our children, our sick, our elderly and our disabled?

I also say, BRAVO to the folks who are somehow finding a way to live off of what I am receiving and survive, because I don't know how to do it.

I carry this fear and this burden with me every day. I felt it was time to share my what is heavy on my heart. My parents tell me I will be okay, that I will always be taken care of, but somehow I have yet to take comfort in their loving words. I have their promise, but do I have the promise of America?

Blessings,

Emily