Wednesday, April 28, 2010

ADAPT on Wednesday

After learning that implementing the Community Choice Act would only cost middle class taxpayers $6.07 annually according to a Harris Poll that was released today, I am trying very hard (and at the moment succeding)to not become livid. For the lack of $6.07 a year, thousands of Americans who have committed no crimes are incarcerated in institutions. What can you buy for $6.07? McDonald's? Some potato chips? A 1/3 of one month's worth of basic cable? Not much! In fact, I have two story ideas planned around this $6.07, one is I'm going to look for change on the street and add it to a change jar until it comes up to $6.07, then I'm going to write about how long it took me to find it. Secondly, I will go to various stores and see what $6.07 affords me. I don't think it will be much or anything very good for me.

The other exciting thing that happened today was that stan Bangenstos of OCR and DOJ came to his pre-arranged meeting as promised. It's amazing what you get when you simply show up outside someone's office with 500 people! He seems really nice and committed to his job, but we'll see what we what see. I don't trust most politicians. I know that sounds aweful, but it's true. He listened to everybody's story.

the most poignant story to me was Joey's from Indiana. It could have been mine. In fact, it was. He also had to move states unwillingly because of service needs. He asked Mr. Bangenstos if he would ever be able to go back home. Mr. Bangenstos said it was the right of every American to live wherever they want to and that does not change because they are disabled. I hope/believe that maybe this man might be the one who lets me move back home and still live on my own. I have no desire to live with my parents and indeed I won't do that again no matter what happens. But Philly is nice, so is Pittsburgh. I could move there, no problem because I'd close enough to visit, but far enough away to not have my parents in my business.

Now I'm off to party. Work's done, now it's time for fun. I'll miss everyone here as always. I can't believe I won't see them until September. Back to Massachusetts and being by myself. I refuse to feel sorry for myself. I won't let my situation steal this evening.

Tuesday, April 27, 2010

Tuesday Report

Flushed from our 2-0 day yesterday, I didn't even mind (much) getting up at 3:30 in the morning. Hell, if justice comes one day sooner because I get up at 3:30 in the morning, I'll do it for a year. I had no idea where we were going. Unless you're one of the elite few, you never know, although experiences people have a guess or two as we march familiar routes. But in my 15 years of involvement with ADAPT, we've never marched to the Hilton Washington, but we did today because Speaker Pelosi was there. We wanted to ask her why she didn't support the Community Choice Act (CCA). Apparently, there was even a group of women with disabilities who wanted to especially try to meet with her because she has always said that she is for women's issues, but not co-sponsoring the CCA helps neither disabled women or women who are caregivers. It leaves both groups high and dry. For myself, I thought Nancy was going to be a better speaker than she is turning out to be. I am disappointed as I'm sure most of my gender is in her performance thus far and not just on this issue.

We began the day at 1t 5:30am, hoping we could intercept Nancy en route to speaking at the American Hospital Association annual conference. But according to reports I have gotten, I wasn't in the area to see the Speaker, so I can't swear that it happened. Pelosi fled when she saw ADAPT assembled outside the Hilton to meet her. May I ask what the Speaker of the House who has armed protection 24 hours a day has to fear from 500+ non-violent mostly disabled protesters. I've been an ADAPT for almost as long as I've been an adult. We are no threat to anybody.

Sam Donaldson came to the event as well. He was much more helpful than Nancy. He seemed interested in what we had to say and even gave us Speaker Pelosi's office number. Not that I'm telling you what to do, but should you want to contact Pelosi to inquire as to why she ran away from non-violent protesters who were merely inquiring into her reasoning and decision-making, feel free to do so. Here is the number 202.225.4965. If you call, thank you in advance.

I'm glad that all we're doing tomorrow is going to Capitol hill and having a press conference and meeting. I honestly don't think my poor body could handle a 3:30am wake-up. Although, as I've said I will if I have to. I'm looking forward as always to the party which commemorates the end of of every action. But I'm said that I'll be going back home to Massachusetts where I have no one to discuss this work with.

Monday, April 26, 2010

Monday with ADAPT

I was really hoping that the rain would hold off until we returned to the hotel. No such luck! It always rains when we're in D.C. My mother says it's because God is weeping that we still have to come here. If that's the case, God should make it rain on the bureaucrats heads, not ours.

Our first stop was the Department of Justice (D.O.J.). For those of you who don't know, the DOJ is responsible for the enforcing the Olmstead decision which said that people with disabilities have the right to receive services in the most integrated setting that is safe. With all the state budget cuts, enforcing Olmstead is difficult because community-based settings are optional whereas anyone who wants to go into a nursing home has the right to do so as long as they meet the requirements. And there are no waiting lists. I have one question: Why would you make an entitlement no one wants instead of paying for the cheaper option that people want? Only in Washington and various state capitals. The D.O.J. big wigs agreed to meet with us here at the hotel on Wednesday at 4pm. Go us!

After the victory at the D.O.J., we stopped in a park to have our traditional McDonald's lunch. there were no fries this time and I'm kind of glad about that because i just learned that McDonald's fries don't mold after 12 weeks. Don't believe me watch the special features on the Supersize Me DVD. But I would have eaten them anyway, as I was so hungry.

Finding a place to pee when ADAPT is out on an action has always been difficult, especially when you're in a wheelchair. A lot of people wear Depends so they don't have to worry about this issue. I can't because I'm allergic to the plastic. When I get back, I'm going to have my friend Laura make me some cloth Depend-like garments that I can use for these events.

Then what happened to me today won't happen again. I was going to use a Port-A-John at the park we stopped at, but the wheelchair-accessible ones were padlocked. WTF? Finally, we just overtook the first-floor bathroom in the Air and Space museum which is very small by the way. I do not recommend it. I waited in line for about a 30-45min for the bathroom. When I came back, everyone had left. Luckily, my roommate Cheryl called my cell phone earlier in the week, so I had her number.

Shaniek and I made it to the National Governors' Association (NGA) after 25 minutes of walking, including misdirection by a gentleman whose heart was in the right place. I'm happy to say my chair held up over the grass. I've been to the NGA before, but I'd forgotten where it was.

The NGA is the organization to which every governor has membership. They have a lot of power, but you wouldn't know this because no one ever hears about them. ADAPT has been negotiating with the NGA for years. Today, they finally agreed to contact ADAPT leadership in ten days and discuss including community-based services as part of their best practices model which many states follow.

As happy as I was at this second victory, the score by my count is ADAPT:2 institutional bias:0. It was hard for me to be at the NGA because I kept thinking of people I love who aren't here anymore. I especially missed Buddy who was an ancient man from Philly with a horn he blew with his foot. I've never been to an action without him and up until I learned of his death abotu 3 weeks ago, I must confess i thought he was immortal. He lived a good life, mostly free of institutions even in the end. But it doesn't make it any easier. I still miss him. I really feel that the only time it's safe for me to miss people is when I'm here. Everyone else understands. These people were their second family too. But then I remember there are battles to be won and my friends wouldn't expect me to stop fighting to mourn them, so I do what every good soldier does and soldier on.

Sunday, April 25, 2010

Sunday with ADAPT

I went to two workshops today and learned a lot. The first is that Obama is not as horrible on the community based service front as I had thought. He still refuses to make community services an entitlement as nursing homes are.

But their are some good stop gap measures as we work toward that goal. First states can get a 6% increase in their federal match grant for Federal Medical Assistance Percentage (FMAP), if they agree to support Community First Choice (an Obama Initiative, in health care reform, which is focused on getting and keeping people out of nursing homes). Currently, Massachusetts plays 50% of all bills for Medicaid recipients, with the federal government picking up the other half. That would become a 44%/56% split if this program were implemented. The change would be in effect forever as long as Massachusetts kept being a member in good standing of Community First Choice.

Given the fact that people in the community have better, more productive lives if Massachusetts elects not to join, I will have harsh words with my elected officials me tell you. I encourage others to do the same and post a comment with your results.

Secondly, although I'm still unclear on the details, is federal long term care insurance opt in. For approximately, $100 a month people could pay into a program which would allow them to get a check in the mail for $75 a day forever to pay for their longterm care or other independence needs. As long as you work between 8 and 20 quarters and pay the premiums, you're eligible. Better yet, the money will not count against Medicaid means testing. You can even be on a Medicaid waiver and receive it. You can also get it if you're self employed. The program will unveil in October 2011. Where do I go to say, "sign me up, Scotty?"

The second workshop focused on keeping people out of institutions through complaints to the Office of Civil Rights (OCR) Examples of possible complaints included: my home care agency doesn’t send me someone who speaks English fluently and I can’t communicate with them, I can’t set my own hours because my state doesn’t allow me to consumer direct my care anymore, and I’m not allowed to being my attendant to the hospital with me to name a few. I plan to write one about the lack of ability to save hours in my home care services (which is really harmful at times), and hospital access issues, as well as my chair which always breaks. OCR will get sick of hearing from me. I say (grinning evilly) "good, good."

After that, we left for the Fun Run. I did my 20 laps. It was hard at times because I so vividly remembered rolling those streets with Buddy, Karin, and other fallen comrades. I few times tears threatened to roll down but I kept them in check and enjoyed the sun. It threatened to rain, but only a few drops fell. I think said fallen comrades had a word with the Lord on our behalf.

I ate at Quiznos. Perfect, Martina sized portions for $3.07! I came back and sold two books. I won't make a fortune, but it's good to make a sale. I've designated Shaniek to be in charge of selling my stuff should I go to jail tomorrow. I'm not opposed to going to jail, especially after the government has banned 12 of my colleagues from actually entering Capitol grounds because they got arrested by John McCain's office in 2008. They're still here, determined to help out in whatever way they can. I am mad on their behalf. This sounds very Stalinist to me. I thought we didn't do this whole thing in America--banning non-violent protesters from Capitol grounds they're paying for. WTF!?

But of course, if they just give us what we want, we will just go away peacefully. You would think they would have figured this out by now. Aren't they making an average of $80,000. More tomorrow. Now, my tired eyes are going to bed.

Saturday, April 24, 2010

Hope or ADAPT Saturday

Today was the first day I arrived in DC with something to do. I had two other plans (a War Tax Resistance rally and Youth Pride DC, but both were cancelled). I’m mad that I left my grandmother’s birthday celebration in Atlantic City at the crack on dawn Friday at get to said, non-existent events!

But I met two awesome, able-bodied men .Te first was Steve, a Quaker from DC, who lent me the money to crash at a hotel after my event and therefore event related housing went bye-bye Saturday night.The second was Jim, a space physicist who shared my table at the bar. He asked why we were there. I told him. He was amazed. I think we have a new ally. He was especially moved when I told him how I had to move from Pennsylvania (where my heart still is, truth be known) to Massachusetts just to get the services to live on my own. He plans to call his media friends and he also gave ADAPT $50! I turned it over to Nancy Salandra, who is our Fun Run Organizer right away.

If more able-bodied men behaved like this, I’d have a lot more able-bodied male friends. Tomorrow starts the action officially with workshops and the Fun Run. Stay tuned!


The reason this blog came into existance today is that my other, long standing disability rights blog went bye-bye with no warning and I really went to be a part of ADAPT's blog swarm this time. My goal will be to write about disability rights, the life of people with disabilities (I tend to say disabled people or use reclaimed, insider words like gimp or crip; disabled folks I know have reclaimed it the way some LGBT folks have reclaimed queer). Note to members of dominant communities: don't use insider language without asking first. It's presumptuous and overly familiar.

My goal here will be to talk about disability rights in general, as well as how disability rights impacts other social justice struggles. I hope that this blog will get people from various stuggles networking and talking. As Reverend Dr. Martin Luther King said, "the moral arc of the universe may be wide, but it bends towards justice." May this blog and my work over all, help it bend quicker!