The Roving Activist’s Blog

I am running for Region 2 Representative for the National Council on Independent Living (NCIL). What is a Regional rep, and what do they do? Here it is straight from NCIL:

“The Regional Representative is the pivotal position in NCIL’s communication system with its membership. The Regional Representative is responsible for communicating at least quarterly with NCIL members regarding IL issues and working with any other group interested in pursuing NCIL’s goals within his or her respective region. The Regional Reps will assist the NCIL board and committees in building and coordinating grassroots coalition to advance NCIL’s advocacy activities. The NCIL Regional Representatives will also assist in the recruitment and retention of NCIL members. The regional representatives will disseminate information related to regional or state advocacy efforts to their regional members.”

NCIL is divided into 8 regions across the nation. Region 2 includes New York, New Jersey, Puerto Rico, and the Virgin Islands. I am excited and honored to run for this position, and honored that Chris, our Director of Advocacy, and my boss, nominated me for this. Here is the text of the nomination:

2008 NOMINATION

NATIONAL COUNCIL ON INDEPENDENT LIVING

REGION REPRESENTATIVE

ANITA CAMERON

Anita Cameron has been an activist for the rights of people with disabilities for over 20 years. Ms. Cameron is a member of ADAPT, NCIL, AAPD, and Not Dead Yet. Over her many years as a leader in the disability community, Ms. Cameron has demonstrated a commitment to grassroots organizing, direct action, civil rights, communication, and diversity. Ms. Cameron embodies many of the values which NCIL embraces.

Ms. Cameron currently lives in Rochester, NY, and works for the Center for Disability Rights. She has lived in Chicago, Denver, Philadelphia, and Washington, DC, among others. Ms. Cameron’s father is of Cuban decent and she has family in Puerto Rico.

In our discussions about possibly becoming the representative for Region II, Ms. Cameron expressed sincere excitement about being able to communicate with the NCIL members across New Jersey, New York, Puerto Rico and the Virgin Islands. She also expressed a desire to work toward greater involvement of the NCIL grassroots in working for the systems changes that will improve the lives of people with disabilities across our nation.

Ms. Cameron would happily accept input regarding NCIL issues, effective immediately, at her email acameron@rochestercdr.org. She has stated that she looks forward to being able to proudly represent the people of Region II.

It’s also in Spanish. Go to the CDR Website if you’d like to see it!

Some of you know that yesterday, June 27th, was my birthday! 43 years ago, to the utter surprise of my parents (they thought they were having ONE baby, not TWO), I entered the Universe. Hopefully, its just a tiny bit of a better place because I am in it–I believe I was put here to do exactly what I’m doing!

On Tuesday, while we were in Albany, Cindy got me a singing birthday card, and got EVERYONE to sign it–how sweet!

I was disappointed yesterday because I couldn’t have lunch with my partner, Lisa. We work at the same CIL, and usually have lunch together, but she had to leave that morning for an all day training. She had been telling me all week about this upcoming training, so it wasn’t like I didn’t know. I hung with Terrie and did some work. I got a couple of e-mails from co-workers wishing me a happy birthday, and Karen sent me a balloon and a card from her, and her son, Nick. Sherry, Terrie’s mom, called to with me a happy birthday, and I called Yvette, my twin sister to give her some birthday cheer.

Several of my Facebook friends left me birthday messages, and Steve sang happy birthday to me. According to a couple of folks, I have birthday presents coming in the mail. COOL!!!

Lisa texted me throughout the day telling me how boring the training was, and how hot it was in there. Somehow, it made me miss her more. At 5:00, she came to pick me up from work. She said that her chest was hurting where she’d pulled a muscle several days ago lifting something, so she was going to take some Tylenol and take a nap, then, we’d go out to dinner. She mentioned that our friend, Tito, was going out of town, but would meet us for dinner.

We got to our door, and opened it, and I noticed the shadow of someone in our house. I immediately got freaked out, and was starting to bellow, but Lisa calmly walked in, and like a dummy, I followed her, only to discover–

FIVE of our friends were there, and the whole place was festooned with birthday gear, and something good was cooking on the stove, and there were presents on the table and snacks, and drinks, and, and, OMG!!! I literally have never been so surprised in all of my life!

Lisa then confessed. There never was a training! She left work early to get the housed cleaned, cook my favorite dishes, and get me a cake and my gifts. Tito and The Gang were in on it, and helped out while Lisa was gone shopping. I couldn’t believe it! OMG!!! We ate, sat around, and chilled, and played UNO and Monopoly (the Lord of the Rings edition, of course) until after nine.

I still can’t believe it, and thank you to everyone who sent birthday wishes, cards, etc, or who simply thought of me–but especially, thank YOU Lisa, for making my day, and being in my life!!!!!

As some of you know, on June 23rd and 24th, Rochester ADAPT went to Albany, the state capital, to, ahem, take care of some business. Actually, we visited the Assembly chamber (and had our pics taken with Asm. Joe Errigo, and Asm. Bill Reilich, co-sponsors of A10440, the Assembly version of a bill that would establish an Independent Living Center in Ontario County), then, visited the office of Asm. Susan John, to present her with a life-sized letter with 500 signatures in support of the aforementioned legislation, which she won’t sign on to. We then paid a visit to the office of Assembly Speaker Sheldon Silver to present him with a gift of 500 postcards signed by folks in support of A10440.

ADAPT then took over the offices of the Department of the Budget (DOB) because they will not release the reimbursemnt rates for agencies participating in the Nursing Facility Transition and Diversion (NFTD) Waiver. The law enacting this waiver was signed four years ago, but the waiver has not been implemented because the rates have not been released! Check out Chris’s post, ADAPT takes on Albany, on the CDR Blog to find out what happened!

The next day, we visited the Department of Health (DOH) to follow up, and to put some hard questions to Bruce Rosen, the Director of the Money Follows the Person (MFP) Program, and the NFTD Waiver, and Stuart Rosenblatt, Director of the Division of Planning and Policy. Afterwards, ADAPT stormed the State Education Department building and demanded to meet with its commissioner.

So, did ADAPT meet The Commish? What went down at DOH? Check out my CDR Blog post called Day Two of ADAPT Takes on Albany to find out!

We have 3 more Community Choice Act co-sponsors! They are:

Rep Ellsworth, Brad [IN-8] - 6/19/2008

Rep King, Peter T. [NY-3] - 6/23/2008 Another New Yorker–Yaaaay!

Rep Musgrave, Marilyn N. [CO-4] - 6/23/2008 Miracle DO happen! Extremely conservative, but she saw the light! Kudos to the Colorado folks for their hard work getting her signed on!

I got this e-mail from Chris on Wednesday. Sorry, I’m a tad late in posting it, but it’s been a really busy time for me.

Hey Everyone!

I just got a call from Senator Nozzolio’s staff. She reports that our bill to establish an Independent Living Center in Ontario County just PASSED THE SENATE!!

It is awesome news!

Unfortunately, we’re still stuck in the Assembly Education Committee and State Education Department is opposing the bill, but by passing the Senate we are MUCH CLOSER to getting ILC status for CDR and Ontario County!

Keep up the good work!

RA’s Note: We will be in Albany on Monday, and will return home on Tuesday night. This trip has much to do with our IL funding efforts. I’ll be sure to tell you all about it!

Our 110th Community Choice Act co-sponsor joined on Tuesday. He was a past co-sponsor of MiCASSA.

Rep Reyes, Silvestre [TX-16] - 6/17/2008

Welcome back!

A friend of mine, Dawn Zuppelli, hosts a show on Rochester Indy Media. Recently, she interviewed me and Mustafa “Moose” Hayes for one of her shows. The show features our work at CDR helping individuals, like Moose, get out of nursing facilities and our efforts through ADAPT to change the laws and policicies that segregate our people. It was really cool to do the show, and I am honored that Dawn thought of me and Moose to do this interview.

A description of the show can be found at: http://rochester.indymedia.org/newswire/display/21401/index.php

The show itself is online at: http://blip.tv/file/998470

During the first break, there is a clip from Gremmy Almighty, featuring our unofficial mascot, Gremmy, and his adventures with ADAPT. Dawn, who has been on many ADAPT actions as our ASL interpreter made this video because well, she’s crazily obsessed with, and loves Gremmy. Psst! I can’t talk, I love him too! If you want to see that Gremmy video in its entirety, click here.

Unfortunately, there is no captioning and no transcript for either of these. I apologize, but it is beyond my control in this circumstance.

We have another co-sponsor of the Community Choice Act!

Rep Abercrombie, Neil [HI-1] - 6/5/2008

Rep. Abercrombie had signed on to MiCASSA, the previous version of CCA–Welcome back!

This brings us to 109 members in the House! Keep up the GREAT work!

For those of you who are on SSDI/SSI, I’m sure that you know how difficult it is for many folks to get on. It seems that we are in a crisis when it comes to that. Here is an Action Alert from the SSD Coalition. Please respond! If you want to call, the numbers are in the body of the Alert. if you prefer to fax at no cost, click on the Take Action link. That will send you to a page where you’ll find a prewritten letter that you can edit. Fill out the form and click on the send button, and you’re done.

Demand Reform in the Social Security Process 
 
Call and fax Congress!
 
Dear Advocates,

People with disabilities who apply for Social Security benefits face enormous obstacles. The average wait to receive benefits is 517 days, and that’s if your claim is approved! Nationally as of March 2008, over 64% of disability cases were denied at the initial stage of the disability claims process and it took from 104.5 – 114 days for claimants to receive the initial decision on their claim. While waiting for Social Security benefits, people often lose everything they have–their home, their savings, and sometimes, their lives–during 2006 and 2007, at least 16,000 people fighting for Social Security Disability benefits died while awaiting a decision!

Please call and fax the following letter to members of Congress and the Senate and ask that they reform the Social Security process by:

Approve that the FY 2009 appropriated funding for SSA’s administrative resources, be no less and even more than $240 million above the President’s FY 2009 Budget Request.

Pass Legislation: Fullerton - Edwards Social Security Disability Reform Act.

Call for Open Hearings and Special Social Security Disability Task Force.

Provide more Independent Oversight on The SSA.

Take Action!

Congressman Charles Rangel
Phone: 202-225-4365

Congressman Michael McNulty
Phone: 202-225-5076

Congressman David R Obey
Phone: 202-225-3365

Congressman Henry Waxman
Phone: 202-225-3976

Senator Max Baucus
Phone: 202-224-2651

Senator Charles Schumer
Phone: 202-224-6542

As I said in yesterday’s post regarding the IL funding saga that we’ve been living through, Chris has been in Albany lobbying, if you will, for passage of A.10440, and S.7264. Here is a link to his post about where the opposition to these bill are coming from on the CDR Blog.

From Chris’s post–“This is the same State Educated Department (SED) that in the 2006 and 2007 budget cycles, when there was money available, decided NOT to fund CDR to serve Ontario County. When there was money available, they told us we had to already be an ILC. Now that we’re asking to be an ILC, they say that we have to already have funding?!”

Chris goes on to say that this is the same agency that uses CDR’s service statistics in their reports, because our numbers are so good–and it makes THEM look good!

Now, how bogus is that? When SED has the cash to fund ILCs, they say we can’t get a piece of the pie because we aren’t an ILC, but when we ask to be an ILC, they say no, because we don’t have the cash! THEN, they have the nerve to use our numbers to make their stingy butts look good! It reminds me of this song by Erykah Badu called “Tyrone”. In the song, she’s kicking her no-good boyfriend to the curb, and telling him to call his friend, Tyrone, to help him pack his things. In her litany of reasons for why she’s dumping him, she says this:

“Every time I ask you for a little cash-you say no, but then turn around and ask me for some a$$”.

Sounds like SED to me!

There is supposed to be a conference call today with folks from SED, the Governor’s office, Chris, and Bruce. Hopefully, some good will come from this call. If not, well, I feel some advocacy coming on…