My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Oct 4

If the States are so great…

Category: Life,Opinions

So, something about Governor Romney that makes me mind-numbingly angry is his assertion that State Government needs less, and in many cases, no Federal oversight. The idea makes me upset to the point of desiring violence against the proponents of said idea.

If States are so great, why did the Federal Government have to end slavery?

If States are so great, why did the Federal Government have to end segregation?

If States are so great, why did the Federal Government have to ensure the disabled access to Public Education?

The Federal Government exists to hold States to a standard, to a level of protection for all Americans. History shows us exactly how necessary Federal intervention is, because States have literally hurt people when left to their own devices. This is just fact, it’s like knowing that the sky is blue.

The thought of leaving Medicaid to the hands of each state is especially upsetting. Florida is a prime example of why Medicaid needs more Federal oversight, not less, let alone none. For some reason, we elected a criminal to be our Governor. Rick Scott made his fortune defrauding the Health Care System, resigning as CEO of his health care company before he could be held legally responsible for anything. Well, he, being of such astonishingly high moral caliber, has decimated Medicaid funding for programs that allow disabled people to live in their communities independently, happily. I got cut by 70%, had to say good-bye to my personal assistants, and thus, my entire life. Good-bye. coffee-shop. Good-bye, movie theaters. Good-bye, girlfriend. Good-bye, favorite bar. Good-bye, everything. According to the new rules, “it’s the responsibility of” my “family to provide access to the community out of love and concern for” my “well-being.” So, I’m supposed to go to the bar with my mom. Oh, wait, my case manager e-mailed to suggest, “your brother can come and you can have a nice Sunday afternoon out on the porch.” My mom isn’t young anymore. My brother’s married, works a crazy busy office job. Now, they’re doing my care 24/7, which is really 85% my mom. We get no help. Oh, wait, the State is lately spending two-ish THOUSAND dollars a week on an ambulance service to whisk me away to “medically necessary appointments.” They strap me to a gurney like Doctor Lecter, it’s great. I used to employe college kids who NEEDED my pay, now the State pays ambulances roughly $700 PER MEDICAL APPOINTMENT, whereas an assistant would get $45 for a three hour appointment. They’re not saving money by cutting my services, they’re just funneling it and a lot more toward the medical industry. Their goal is to have me, and people like me living in hospitals and institutions. It costs more up front, but the gamble is that we die way quicker, and folks like Rick Scott make a sweet cut somewhere along the way. If Scott had full control over Medicaid thanks to Romney… I don’t even want to write the words.

I WANT intelligent, moral, kind people like President Obama to be able to see State-level corruption, and have the power to fix it. I wish he could see me, how I employed people, college kids, how I was contributing to my local economy, how I lived a normal little life. Now, it’s all gone, and for what?

8 comments

8 Comments so far

  1. Tasha October 4th, 2012 11:31 pm

    the system is sooo fucked.

  2. Tim October 4th, 2012 11:59 pm

    Thank you for sharing your experience. I don’t think enough people understand just how this issue really affects real people because they don’t know anyone in a situation unlike their own.

  3. Sal Anthony October 5th, 2012 12:36 am

    Thanks for telling is like it is. My friend told me about your blog. I too have a disability. Are you appealing your med waiver ruling? Do you have a lawyer? If not you should contact Denise Arnold at APD.

  4. sara October 5th, 2012 5:26 am

    I know someone in Cali who uses a wheelchair. Most people think they are healthy and that’s it but he’s prone to infections/and can’t use the bathroom himself. He also has 24 hours service BUT over there these agencies never have anyone to help him. Sometimes he has to stay in the ER because he lives alone and cannot be alone the entire night. It’s sad to see his post.
    I hope you find some loop hole. It’s sad to read what you wrote because I know you had such freedom with your caretakers and enjoyed going to the coffee shop.

  5. Veronica October 5th, 2012 7:20 am

    Great post and well said!

    I could say SO much in this comment field, but I’d be hijacking your blog so I’ll be short.

    I tried the local institution here in Norway twice. I’ve never felt more dead and like a burden. They didn’t know anything about how to handle different issues with me and I have no doubts that if it wasn’t for a friend of mine who I begged to come to help me every day, I’d be dead by now. I don’t know how it is in the US, but there’s an “old saying” here (and I often use it) and it goes: “You have to be healthy to get sick and end up in a hospital in Norway.” The same goes for institutions.

    Institutions are no options for most disabled people, but politicians are unable to see that. If they can shove the problem away and far away from sight it will somehow be alright. I wish more of them would listen to OUR voices and not just their own. I think that applies for ALL countries.

    I doubt Romney will stand a chance against Obama at the end of this election, at least that’s what I’m hoping for, anything else will shock me. I understand your anger. Very few things annoy me more than Republicans these days, and considering I won’t even be affected by whoever will win the election, I can only imagine.

    I hope President Obama will see you and be able to discuss with you about all this in the not too far distant future.

  6. Beth Anne DeGiorgis October 5th, 2012 3:44 pm

    Thanks for writing this. I’m sorry to hear that they cut the funding you needed for your personal assistants. It’s absurd, offensive really, that Rick Scott thinks that a family’s “love and concern for well bring” is all that is needed to provide an active and fulfilling to their family member with a disability. As if true love, or true concern, will magically transform into time, means, and ability.

    And states have no incentive to do the right thing for people with disabilities. Washington D.C. started the transition from instituions to community based settings in the 80′s. I worked for a guy who spent 50 years in an institution, but now he can walk around his neighborhood, crack open a beer at night, and work at an art studio. He has a really amazing life because a group of people sued that institution for abuse, and now the DC Waiver program funds community and home-based services. It’s not a perfect system yet, but it’s going in the right direction. Guess how long it took our neighbors in Virginia to follow suit. Twenty five years. And Romney thinks states will voluntarily do the right for people with disabilities? No. Just like the prison industrial complex, states will continue to put people in high-cost institutions if it profits people in power.

    Thanks again for sharing your perspective.

  7. Mark Johnson October 7th, 2012 11:34 pm

    Hi Michael

    Greetings from Silver Spring, MD.

    I just saw the TAL segment on you on YouTube. I found it because someone posted about you on reddit:
    http://www.reddit.com/r/science/comments/113yvu/i_met_this_amazing_man_who_cannot_breathe_or_move/

    I googled you hoping to find a blog, and hoping things were better for you. I’m sorry to hear several things are worse for you right now.

    Your description of Rick Scott’s profiting from institutionalizing people reminded me of something else I just heard today on Bob Edwards’ show on Sirius XM:
    http://www.bobedwardsradio.com/bob-edwards-weekend/ (link is about the “current” show, no permalink yet AFAICT) where he interviews Eugene Jarecki about his new movie on the prison industrial complex. Your previous commenter also remarked on the similarity.

    I was a bit surprised that you have to rely on the Neuroswitch to type. I would have thought there was facial recognition software that you could use to control some of your computer, maybe, with gaze. I will soon be learning more about assistive technology, as my best friend was just paralyzed (C5) in an accident. He gets out of ICU and goes to rehab (Colorado) next week.

    Let’s both hope that Obama and his team can use the next two debates to hand that lying douchebag Romney his ass.

    I hope to see more on your blog soon.

  8. Daniel Carvajal October 26th, 2012 2:58 pm

    I am in the same boat as you… I feel we need to unite to fight for our rights as disabled individuals!!

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