The day following ADAPT’s protest of Nancy Pelosi, I was interviewed by Fox News for the Fox and Friends show, a program that is aired nationally. I got home at 4:30 am and at 6:00 am, was taken by limousine to Fox’s studios here in Rochester. I was placed in an empty room with a camera, and microphones were affixed to my clothing, and on placed in my ear, so that I could hear and respond to the interview. It was all done remotely, and the Fox reporters were nice to me. I was afraid that they would try to make me look foolish. Anyway, here is the link to the interview.
Archive for the ‘MiCASSA/Community Choice Act’ Category
My Interview with Fox News
Thursday, June 17th, 2010Nancy Pelosi Heckled by Disabled During Speech
Thursday, June 17th, 2010On June 7-8, 2010, 25 ADAPT folks were in Washington, DC for the America’s Future Now! 2010 Conference, organized by the Campaign for America’s Future. I wrote an article for Associated Content describing what happened.
The CCA Resolution Project
Monday, March 22nd, 2010At the end of 2008, the CCA Resolution Project was launched by the Center for Disability Rights Advocacy Department. Read about this very important project to gain support for the Community Choice Act.
Take Five! ADAPT Steps It Up to Ask Congress to End the Institutional Bias
Monday, March 8th, 2010Take Five!
ADAPT Steps It Up to Ask Congress to End the Institutional Bias
As we Defend Our Freedom at the state level and call on the
administration to enforce our rights established by the Supreme Court’s Olmstead decision, we can’t let Congress off the hook. After all, Congress has the power to end the institutional bias by passing the Community Choice Act (S683/HR1670). So how are we going to step it up?
We’re going to take on FIVE of them at a time, together!
Right now, we have 121 co-sponsors in the House (at least until Eric
Massa’s resignation takes effect) and 25 co-sponsors in the Senate.
About one-quarter of each house has signed on as a co-sponsor of the
CCA!
The number of people signing on slowed down a bit while we focused on
health care reform legislation, so we are changing our approach.
Instead of asking everyone to contact their local Representatives or
Senators, ADAPT’s Community Choice Workgroup is identifying FIVE
specific members of Congress that we will ask everyone across the
country to work on. We will do electronic action alerts that allow us
to fax and email the DC office, encourage local people to call the
office, and coordinate visits in the DC offices.
It’s really important that we all reach out to local folks as well. Our elected officials do pay closer attention to the people who elect them. After doing an alert, everyone should try to identify people and groups we know are in the Representative’s district (or at least close).
These may be family, friends, or that friend from high school long ago that you now have a reason to call or email.
When we release new targets, we will offer talking points that can be used.
It can be really frustrating if you think you’re the only one making
calls and contacts. You don’t know what other people have been told.
When a staff person says, no one else has asked about this, you don’t
know what to say. ADAPT, as part of the Coalition for Community
Integration, has set up a website, http://www.c4ci.org ,
where we can post information about our legislative advocacy and visits. This will allow everyone to share specific information about their work.
Also members of the Coalition are regularly in Washington, DC and set up appointments in the DC offices. The DC advocates can take the
information you have shared online to those appointments and report back to you online about what they heard.
Take Five’s First Round: IT’S TIME TO FREE OUR SISTERS!
In recognition that we are starting this effort on International Women’s Day, we have identified five Congresswomen who we want to sign on as co-sponsors of the Community Choice Act (S683/HR1670). All have been previous co-sponsors of the legislation, but haven’t signed on yet.
Judy Biggert, IL-13: Her district includes the cities of Naperville,
Downers Grove, and Bolingbrook.
Nita Lowey, NY-18: Her district is in southeastern corner of New York
State, just north of the Bronx, and includes parts of Westchester and
Rockland Counties.
Carolyn McCarthy, NY-4: Her district is located in central Long Island
in west-central Nassau County and includes Mineola, the Five Towns, East Rockaway, Rockville Centre, Oceanside, Garden City, Hempstead,
Uniondale, East Meadow, Roosevelt, Franklin Square, Valley Stream, and
Elmont.
Gwen Moore, WI-4: The Congresswoman is the first woman to represent the district which is based in Milwaukee and also includes South Milwaukee, Cudahy and St. Francis, and part of West Allis.
Loretta Sanchez, CA-47: California’s 47th congressional district covers the cities of Garden Grove and Santa Ana and parts of Fullerton and Anaheim, in Orange County. The 47th congressional district is one of the few districts in California that does not have an overwhelming majority of voters favoring one party.
TAKE ACTION!
START by doing this electronic Action Alert: http://www.cdrnys.org/ccawomen
If the link does not work, please cut and paste it into your browser.
After you do the alert, forward it out to other folks, particularly
people and organizations from the districts these Congresswomen
represent. Consider sending it out to women’s groups! FREE OUR
SISTERS!
Some Talking Points: The Institutional Bias is a women’s issue!
According to the most recent data on the CMS website, 68.4% of nursing
facility residents are women.
Women typically live longer than men and, if married, tend to outlive
their husbands. As they grow older, women are more likely than men to
live alone, without a spouse or other family member to provide
assistance. In fact, by the time a woman reaches the age of 75, the
chances that she is living with a spouse have dropped below one in
three.
Women are more likely to need assistance than men of the same age.
Among people age 75 or older, women are 60 percent more likely than men to need help with one or more activities of daily living, such as
eating, bathing, dressing, or getting around inside the home. One in
nine women age 75 or older, and one in five age 85 or older, needs
assistance with daily activities.
Women are 60 percent more likely than men to go into a nursing facility at some point in their lives.
According to a 2003 National Alliance for Caregiving/AARP survey, six
out of ten informal caregivers were women. Among caregivers providing
high levels of care, the proportion of women was even greater.
The 2003 survey reported that the “typical” caregiver is a 46-year-old
woman, who has some college education, works, and spends more than 20
hours per week providing care to her mother.
More than 60 percent of female caregivers who were employed had to make sacrifices at work to accommodate caregiving, including going in late or leaving early, working fewer hours, turning down a promotion, losing some benefits, taking a leave of absence, or choosing early retirement or giving up working entirely.
Tell Representative Steny Hoyer it’s time to end the institutional bias!
Tuesday, February 23rd, 2010Tell Representative Steny Hoyer it’s time to end the institutional bias!
Urge Him to Co-sponsor the Community Choice Act!
Disability rights advocates must send a message to Representative Steny Hoyer. He helped to lead the passage of the ADA. Previously, he co-sponsored MiCASSA. But he is not yet a co-sponsor of the Community Choice Act (CCA). This must change, and NOW is the critical time!
Seniors and people with disabilities overwhelmingly prefer to live in the
community with supports rather than being forced into a nursing facility or
other institution. CCA gives people real choice in long term services and
supports. This legislation ends the institutional bias in Medicaid by giving
individuals who are eligible for a nursing facility or other institutional
“care” equal access to community-based services and supports, like attendant services.
Contact Representative Steny Hoyer to ask that he end the institutional bias and become a co-sponsor of the Community Choice Act. Click on
http://www.tinyurl.com/hoyer-alert This will take you to a letter that you
may personalize. Enter your contact information, then, click once on the Send button.
It’s that easy! Afterwards, please send this Alert to your friends so
that they can urge Representative Hoyer to co-sponsor the Community Chouce Act!
If the link does not work, please cut and paste it into your browser.
Live from Atlanta — the full story
Sunday, November 8th, 2009On 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!
Getting ready for Atlanta
Wednesday, October 7th, 2009
Community Choice - It Is A Civil Right!
I can’t wait ’til Friday night! No, its not because of the weekend. That is when a busload of us from Rochester ADAPT will be headed to Atlanta, Georgia to fight to FREE OUR PEOPLE!!!
ADAPT has been to Atlanta before – the first time was in 1989, then, 1990, 1996, and we’ll be back October 10-15, 2009. I was there in ‘89 and ‘90, but missed ‘96 due to illness.
It is very important that we are going back to Georgia because it’s the Olmstead state. Olmstead is the 1999 Supreme Court decision that gives people with disabilities the right to live in the community. The Supreme Court ruled in its decision that unnecessary institutionalization is discrimination under the Americans with Disabilities Act. It stems from the case of Olmstead v. L.C. Two women living in a psychiatric institution in Georgia wanted to move into the community. Their doctors had determined that they were able to live on their own with supports, but the state of Georgia wouldn’t allow it. They sued, and the case went all the way to the U.S. Supreme Court, where they won a landmark victory. The result of the decision is that every state must devise (make) an Olmstead plan to transition (move) people with disabilities from institutional settings, like nursing homes, state schools, and psychiatric hospitals. Ten years later, many states still don’t have an Olmstead plan. Georgia, the Olmstead state, is one of them.
In fact, from 2002 – 2007, the rate of institutionalization in Georgia has increased from 11% to 14%. Of nearly 230,000 people with disabilities aged 5 -65 years, living in the community who need attendant services, only roughly 17% receive any such assistance. Our sisters and brothers in Georgia need our help badly!
I’ll be blogging from the action as part of the ADAPT Blogswarm at Nick’s Crusade. Read about it here. If you blog for disability rights, join us! We need to get the word out about what’s going on! In the current economic crisis, the very freedom of our people is threatened, so it is VERY important that we work hard to FREE OUR PEOPLE!!!
All mention of CCA wiped from White House site!
Wednesday, May 13th, 2009I heard the buzz a few days ago from Nick Dupree and others, and couldn’t believe it, so I checked for myself. here’s what I found:
Promote Access to Community Living Services
Too many people who need assistance with activities of every day life are faced with a difficult choice. They can move into a nursing home and face safety and quality of care problems or risk injury or death by staying in the community without adequate services to take care of personal needs. The President believes that more can be done to encourage states to shift more of their services away from institutions and into the community, which is both cost effective and humane.
This is a far cry from what was on his disability policy page even a few short weeks ago. Here is a link that shows the side-by-side comparison:
http://versionista.com/pub/15881/1/14/2:1/
Now, am I gutted? Do I feel betrayed? Hell YES!!! Am I surprised? Hell NO!!! That new statement couldn’t have been more vague if they tried. And given the fact that this was done right after ADAPT hit the White House?!? Yeah, Obama Admin, you’ve shown your true colors!
National Call-In Day – Ensure Long-Term Services and Supports are Included in Healthcare Reform!
Wednesday, May 13th, 2009National Call-In Day – Ensure Long-Term Services and Supports are Included in Healthcare Reform!
Background
In coming weeks, the Senate will finalize legislation to reform America’s health care system. Now is the time for our country to address the institutional bias in Medicaid. Long-term services and supports must be included in health care reform.
There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services.
Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports. Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.
Proposals exist to help address these issues. However, they will only be included within healthcare reform legislation if Congress hears from you.
Aging and disability organizations across the country have joined together to host a national call-in day on Wednesday, May 13th. Please join thousands of others across the country in calling your Senators to tell them how important it is to include long-term services and supports. Your calls make a difference!
Call-In Information
When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)
You will be asked which state you are calling from and will be connected to your Senators’ offices. Below is a sample script to leave a message.
“Hello. My name is _________ and I’m calling from (the state you are
from) to ask the Senator to help make sure the Community Choice Act and long-term services and supports are part of health care reform.
Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. We must address the institutional bias and give people a REAL CHOICE. Please ensure that the Community Choice Act and long-term services and supports are included in legislation to reform health care.
Thank you.”
Please, PLEASE call in! When talking to Senator Schumer’s office let it be known that you know that he is on the Senate Finance Committee, which has a lot of say-so in what is going in the health care reform legislation. Tell his office that it is vitally important that, since he is a supporter of the Community Choice Act, that it is included in health care reform!
Live from DC-Capitol Hill
Wednesday, April 29th, 2009Well, all 99 ADAPT warriors who were arrested yesterday got back safely, and all of us are here in the cold and rain here in Upper Senate Park where a rally with SEIU, NCIL, and AAPD is going on. Senator Tom Harkin will be here to speak.
We’ll then head to the Capitol to do our scouring of the hill. SEIU folks will be joining us, but the topic that we all will be pushing is the Community Choice Act!!
