Archive for November, 2009

Let your voice be heard in Albany!

Sunday, November 8th, 2009

Bright and VERY early Monday morning, the Rochester crew will be saddling up to go to Albany, our state Capital, to protest the Governor’s, and state Republicans’ proposed budget cuts. I’ll try hard to blog live from the action. Anyway, here is the Alert that I sent out:

Let Your Voice be heard in Albany!

As you have probably heard, the Governor proposed DRASTIC cuts to home care, Medicaid, and Independent Living Centers that include a 10% cut from November through March and an on-going cut of three to four percent. Further, state Republicans have proposed to completely eliminate all Medicaid services that are labeled “optional” by the federal government, including coverage for prescriptions, as well as 18 other essential health care services. Although times are difficult, these cuts will make matters worse for many folks. These proposed cuts directly affect almost every New Yorker with a disability!

TAKE ACTION!!!! Let your voice be heard in Albany!

The Center for Disability Rights has planned a trip to make sure our voice is heard by the Albany bureaucrats who hold people’s lives in their hands.

November 9, 2009 – Albany

We are headed to Albany for a statewide action on the cuts.

We will meet at the Center for Disability Rights, located at 497 State Street by 5:30 AM, and we will arrive back at the office about 11 PM.

We don’t know what could happen, so people should be sure to bring meds and toileting supplies for two days in case we have unexpected problems or delays.

We really don’t expect to need them, but don’t want people to have serious medical issues, so bring them, just in case.

We have proposed approaches that will save money and support people living independently, but the Paterson administration has not acted on our proposals. Instead, they are proposing cuts to services across-the-board, so we have the right to be angry and push back.

Please join us and help others join us in this effort!

They Still Don’t Get It: My Vote Story

Sunday, November 8th, 2009

I got up Tuesday (November 3, 2009) bright and (not so) early so that I could make a quick stop at my polling place and vote before going to work. Thankfully, my polling site is down the street from my house at Andrews Terrace, one of those buildings whose residents are mostly seniors or folks with disabilities, so I didn’t have to worry about physical access.

I wondered if I would have the trouble that I had last year, where it took me almost two hours to vote because the machine had not been turned on, or would the machine be “broken” as it was claimed to be when I tried to vote on Primary Day this past September. Oddly, the machine had broken down a few minutes before I came, and they had called it in. I later learned that the Board of Elections had received no such call. Hmmm…

I got there a bit after 8:00 am, and presented myself to the election inspectors, and signed in. Afterwards, the gentleman (I don’t remember his name, so I’ll call him Tony) pointed toward the lever machine, but I wanted to use the accessible voting machine. They called to Don, an older gentleman who apparently was the tech guy. The screen was still blank, but I was told that they had powered up the machine earlier. After about ten minutes, they were able to get the screen to operate, and I was able to vote with no problems at all. The ballot printed out quickly and slid nicely into the privacy sleeve. I smiled and breathed a sigh of relief.

This is where I celebrate the happy ending, right? Where I sail out the door on a cloud of elation for having the first hassle-free voting experience since I’ve been in New York, right? WRONG! Almost immediately, Tony snatched my ballot out of the privacy sleeve, glanced at it, and proceeded to put it into the scanner. I asked one of the ladies (I believe it was Ruth) at the desk about privacy in voting, and she instructed Tony to let me see my ballot. Tony handed it to me without the privacy sleeve. I glanced at it, and handed it back. I asked about privacy again, and she assured me that they wouldn’t pay attention to how I voted, but meanwhile, Don had taken the ballot from Tony, and was perusing it, reading it like he was reading the morning newspaper! I was aghast, and my jaw literally dropped. I said, “See, this is exactly what I mean”! Ruth then yelled to Don, “Hey, hey, stop that! You can’t do that”! It took a full 30-45 seconds to get his attention, then, he handed the ballot to Tony, who scanned it, then folded it and put it aside. Ruth apologized, but I shook my head in disgust, got my “I Voted” sticker from Sarah, the fourth inspector present, and left.

Lisa, who also came to vote, told me that Ruth had remarked to her that I had used the machine last year, and was the only person to do so, and probably would be the only person to use it this year, as well. I recalled that I’d overheard the conversation while I was voting, and I heard Sarah say that it was good that they had the machine here for me to use.

I must say that I left that voting experience with a really bad taste in my mouth. The thought of not being able to cast my vote in secret like everyone else makes me exceedingly angry. I wasted no time in contacting the Monroe County Board of Elections, and spoke with Commissioner Tom Ferrarese, who was every bit as appalled as I was. He placed a call to the polling place and gave a stern reminder to the inspectors about privacy and the use of the privacy sleeve on ballots cast on the accessible machine.

It certainly seems, based on other complaints that I’ve received, that many of our election inspectors still don’t get it when it comes to voting access for people with disabilities. I have come to the conclusion that I will continue to have problems at the polls for the foreseeable future. I will, however, continue to fight for the right of people with disabilities to vote privately, independently, and secretly, just like everybody else.

Testimony before the State Senate Finance Committee

Sunday, November 8th, 2009

Monday, November 2, 2009, I was one of over 50 people from Rochester ADAPT/Center for Disability Rights who went to Buffalo, NY, for the hearing before the State Senate Finance Committee about Governor Paterson’s Deficit Reduction Plan (DRP). Chris, Bruce, and I presented testimony before this body. Here is my testimony. I will say here that many folks felt that it was very powerful!

Dear Senator Kruger and members of the Senate Finance Committee:

My name is Anita Cameron, and I am a Systems Advocate with the Center for Disability Rights, a Rochester-based Center for Independent Living with offices in Geneva, Corning, and Albany. I would like to thank you for allowing me to speak today regarding Governor Paterson’s Deficit Reduction Plan (DRP).

I am before you today not only in my capacity as System’s Advocate with the Center for Disability Rights, but as a person who has friends and colleagues who will be personally affected by the proposed cuts with devastating results.

As you know, the proposed cut to Medicaid is $287 million, which includes $24.5 million from home health care, and $27.5 from personal care. Combined with the loss of federal matching funds, the total amount of cuts to home care and personal care will total $131 million!

I have friends and colleagues who will be at imminent risk of institutional placement because the cuts will mean that they will not be able to receive the necessary hours of service for them to remain at home. Some of them work, and won’t be able to keep their jobs if they lose their hours of home and personal care services and are institutionalized. Not only will it cost the state more to institutionalize people, as has been demonstrated, the state will further lose revenue from the loss of tax and other revenues from these New Yorkers.

This unnecessary institutionalization is in direct contravention of the U.S. Supreme Court’s Olmstead decision, which states that “unnecessary institutionalization is discrimination under the Americans with Disabilities Act”. Instead of forcing people into institutional settings as a result of the proposed cuts, our state should be working expeditiously to create and implement an Olmstead plan to transition New Yorkers trapped in institutions back into their communities.

Another concern is that part of DRP includes $11.4 million in cuts to the state’s Supplemental Security Income (SSI) benefit. A cut of as little as ten dollars will have devastating effects for people on SSI. I have a friend who has told me that a loss of even $10.00 means that he won’t be able to pay his rent. For another friend this means that she can’t pay the co-pay on her medications. Another friend won’t be able to pay bus fare to go to the doctor, school, or church, leaving him trapped in his home. For another friend, that means that she won’t be able to buy the few groceries that she can on her limited income. Add to this that for the first time in 34 years, the federal government will not add a cost of living increase, and you can only imagine what that means!

The last thing that I want to speak of is the other proposed cuts by the Senate Minority that are particularly disastrous for people with disabilities and seniors. The proposal is to eliminate all Medicaid optional services offered in New York. Optional services are those services that are not required by the federal governments, such as prescription drug coverage and home and community based personal services. People with disabilities and seniors will not be able to get their medications, or receive personal services which will result in a worsening of disabling conditions and illnesses, hospitalizations, and institutionalization in nursing facilities. I know that we can do better than this. Cuts must happen, that is true, but there must be a common-sense way that this can be done, rather than gutting the very programs that would save our state money. There must be a mustering of political will to do the right thing by the most vulnerable New Yorkers.

Thank you for your attention,

Anita Cameron
Systems Advocate
Center for Disability Rights

Live from Atlanta — the full story

Sunday, November 8th, 2009

On October 9th, Rochester ADAPT hopped on a bus and headed to Atlanta, Georgia, home of Dr. Martin Luther King, Jr. and the Civil Rights Movement. Georgia is also known as the Olmstead state because it was there that Lois Curtis and Elaine Wilson, the original plaintiffs in the Olmstead vs. L.C. and E.W case launched their fight to leave a psychiatric hospital and move into the community. Their case went before the U.S. Supreme Court, which ruled that “unnecessary institutionalization is discrimination under the Americans with Disabilities Act”. An outcome of the ruling is that each state must devise an Olmstead plan to transition people with disabilities living in institutions into their communities.

Ten years later, Georgia still has no Olmstead plan, and more and more Georgians with disabilities are being institutionalized. From 2002 to 2007, the percent of nursing facility residents under age 65 grew from 11.6% (7,211 people) to 14.2% (9,273 people). Of the approximately 230,000 non-institutionalized Georgians with disabilities age 5+ who require daily assistance, only about 17% of them get any assistance through the state’s Home and Community-Based Services system. And recently, the state’s Division of Aging has announced that due to budget cuts it is discontinuing its participation in the federal Money Follows the Person (MFP) program, a program created in the Deficit Reduction Act of 2005 that allows people to move from more expensive institutional settings back into more cost effective community settings.

Disability activists in Georgia said “enough” and asked ADAPT to help them get their Governor and Georgia state agencies to listen to them and get to work to free our people, and of course ADAPT said “yes”, so Rochester ADAPT joined 500 other ADAPT member in Atlanta.

As we were preparing to leave, YNN News came and took pictures and interviewed one of the folks going. We then took off into the rainy night, and arrived the following evening.

Sunday, October 11th dawned beautiful and sunny, and after a wonderful picnic of delicious Southern treats provided by local activists, we marched onward to a rally on hallowed ground –the Martin Luther King Jr. National Historic Site, which houses a museum, the burial site for Dr. King and his wife, Coretta Scott King, as well as the home where Dr. King was born.

Mark Johnson, a local Atlanta ADAPT member started things off with a moment of silence for all of our sisters and brother who have died in institutions, and for those still trapped inside. Ironically, right next door to this symbol of freedom is a nursing home!

Other speakers included Sue Jameson, the attorney for Lois and Elaine, Delores Bates, who finally got out of a nursing home after being in for 43 years (it was her birthday, so ADAPT sang “Happy Birthday to You”. It was the first birthday celebration she’d had in over 40 years.), Bodie Watkins, who has been trapped in a nursing home for 52 years, Andrew Jones, who was the first person in Georgia to transition back into the community under MFP, and Lois Curtis, the surviving Olmstead plaintiff, who led us in a “Free Our People” chant. After the rally, ADAPT slowly marched past the nursing home next door, while “We Shall Overcome” was sang. It is here that I will confess that it was I who sang “We Shall Overcome”. ADAPT members felt that it was powerful and moving, and many were brought to tears. I was honored to have been asked to do the singing. It was powerful and emotional for me. Click here to see the video of Sunday’s rally.

Monday, the 12th was a day of epic rain, but that didn’t stop ADAPT! We headed to the Capitol to get Governor Sonny Perdue to keep the promises he made to Georgians with disabilities during his first term. Dashing through the rain, we stormed the Capitol, taking over the first and second floors. The building was alive and pulsing with our chants of “free our people”, and “people are dying, shame on you”! Our demands were:

1. Meet with ADAPT;

2. Appoint an Olmstead “Czar” to divert from nursing homes people who wish to remain in the community, and transition others already in nursing facilities back into the community;

3. Adequately fund community-based services so Georgia complies with Olmstead and the ADA;

4. Freeze institutional funding at current levels and work with advocates to rebalance long-term services and supports funding so the majority is spent on home and community services;

5. Modernize Georgia’s Nurse Practice Act to allow trained attendants to perform health maintenance tasks;

6. Fund community organizations to identify & assist people in institutions to return to community;

7. Issue an Executive Order requiring the Division of Aging to keep implementing MFP, and remove the “cost share” from Community Care Services Program services; and

8. Demonstrate leadership by publicly urging other southern state governors to develop and implement Olmstead plans and policies in accordance with the ADA and the Olmstead decision

After much negotiations, ADAPT was able to get a meeting with the Governor’s Chief of Staff, and other high-level administrators.

Tuesday,  the 13th, ADAPT headed over to the Office of Civil Rights to find out why they aren’t enforcing the Olmstead decision, and to push them to do so. The cops were clearly unhappy with our presence as wave after wave of ADAPTers entered the building, and they got ROUGH! We kept our cool, as we are a steadfastly nonviolent group, and concentrated on why we were there. A few of our folks were arrested, and several were definitely man-and woman-handled and injured. After negotiations, those folks were released, and later, Roosevelt Freeman, the Regional Director of the Office of Civil Rights, came out with some of his staff and announced that they would be meeting with ADAPT the next day.

Elated, we had lunch, then, took a quick walk over to the Department of Housing and Urban Development (HUD). No sooner than we filled the first floor lobby, the Regional Director of HUD came down, welcomed us, and asked to meet with six of us. An hour later, she and her staff told ADAPT that they would restart monthly meetings with ADAPT, have the national office work with local housing authorities to support vouchers for folks wanting to transition from nursing homes back into the community, and have the regional office provide training on fair housing compliance. What a day!

Wednesday, the 14th,  we tackled the issue of the media not seeing the issue of living at home rather than an institution as a civil rights issue. The media either won’t cover most disability issues, or gets it totally wrong. Case in Point: CNN’s medical correspondent, Dr. Sanjay Gupta, did a report back in August where he referred to the Community Choice Act (CCA) as legislation that would improve access to hospitals. WRONG! CCA is about giving people with disabilities and seniors living in institutions the choice to live in the community! ADAPT contacted Dr. Gupta and asked him to correct his story, but he never responded. Well, guess whose world headquarters were right next door to our hotel? Why CNN, of course, and ADAPT took full advantage of that fact! We sauntered over to the CNN entrance, then, executed a lightening fast takeover of the entrance and lobby, and our chanting could be heard throughout the CNN complex. The cops, as usual were pretty rough, but negotiations quickly began taking place. A cameraman came down and began filming, and a staff person came over to see what we wanted. She quickly took our demands upstairs.

Our demands were:

That Dr. Sanjay Gupta and his colleagues at CNN meet with ADAPT to learn about the institutional bias, the Community Choice Act (S683/HR1670), and consumer-directed/community-based alternatives to institutionalization;

That Dr. Gupta correct his inaccurate report about the Community Choice Act;

That Dr. Gupta and his colleagues at CNN acknowledge in their reporting that there are disability rights and civil rights issues embedded within healthcare issues;

That Dr. Gupta and his colleagues at CNN report about the efforts of the disability community to eliminate the institutional bias and give people a REAL CHOICE in how and where they receive long term services and supports; and

That Dr. Gupta and his colleagues at CNN report about community-based and consumer-directed models of assistance that are more cost-effective and give seniors and people with disabilities real control over their lives.

Almost immediately, David Vigilante, CNN’s VP for Legal Services came down, and a team of ADAPT folks (I was one of the group) went upstairs with him to discuss our demands. It was clear that he “got it” about community choice being a civil rights issue. Vigilante told our group that they agreed to explore how they could do a story about our demands. He was given a list of ADAPT folks to contact, and CNN has actually began calling and connecting with ADAPTers.

The day wasn’t done though. We went back to the Office of Civil Rights offices with the 10 ADAPTers who were to meet with the Regional Director and his staff. Though it was drizzling, our spirits certainly were not dampened and we chanted and sang as we waited for news of the outcome of the meeting.

The news was great! OCR was very open to systemic improvements in reporting and investigating Olmstead compliance in the eight states that make up the Southeast region. They were also interested in investigating systemic complaints because it would benefit more people, as opposed to individual complaints. Finally, they said that they would share the work that they were doing with other OCR offices for the Department of Health and Human Services (HHS) around the country so that Olmstead compliance would happen everywhere.

What a week! We hit four targets in 3 days, and helped our sisters and brothers in Georgia make headway that they could not make in years. ADAPT ended the week with our traditional party, but for the Rochester crew, it wasn’t over yet. We stayed on in Atlanta for two “play days”.

Thursday, the 15th,  some  of our folks went to the Aquarium, while others rested, or tried to recover their strength. I will say here that I stayed in bed the whole day, as I was suffering, and I do mean suffering from the ADAPT Crud. Lisa went with some of our crew to the Underground Mall, where she bought me a beautiful shirt from an Afrocentric store.

Friday,  the 16th, some of our crew went to the Coca-Cola Factory, but many of us (including me; I wouldn’t have missed this opportunity for the world, ADAPT Crud be damned!) returned to the Martin Luther King Center. We walked about the museum, where there were entire rooms devoted to the life of Dr. King, Coretta Scott King, Rosa Parks, and Mahatma Gandhi. The rooms held pictures, period clothing, a giant timeline, Dr., and Mrs. King’s medals that they had received (including Dr. King’s Nobel Peace Prize), and the books and papers that Dr. King had written. In another building, we watched a movie about the civil rights movement, posed on a giant recreation of a march, listened to some of Dr. King’s speeches, and saw a huge clear glass structure that was covered with every Jim Crow law from every state in the South. Our emotions were mixed – amazed, sad, angry, relieved that these laws are no more.

Later that evening, our hardy Rochester folks boarded the bus for the long ride home, invigorated by this action and ready to work to FREE OUR PEOPLE!

A case of Blogarrhea

Saturday, November 7th, 2009

Be warned Gentle Readers, that I am afflicted with a case of Blogarrhea! I became ill with what is known as the ADAPT Crud during the Atlanta action, and could not really blog the way I wanted. The crud was so bad that I was out sick for a week. Since then, I have been very busy, which seems to have been the story of my life for quite some time now — sick, busy, busy, sick! That’s not counting the occasional hiccups and problems with Wordpress that I’ve encountered lately, including an upgrade that resulted in the wiping out of all my cute images in my header and sidebar, which is the pics that you see at the top and side of this page (thank goodness I make sure that I back everything up first!). The result is the aforementioned blogarrhea, which is my attempt to catch you up on what has been happening in my life. I’ll start with a full report of the ADAPT action in Atlanta. Stay tuned…