The Roving Activist’s Blog

Little Emilio Gonzales has passed away. He was 19 months old. Thankfully, he did not die at the hands of doctors slavishly following Texas’s Futile Care law. His family, through their lawyer, was able to stop that. Emilio succumbed naturally to the mysterious condition that doctors had diagnosed as Leigh’s Disease. Though I am sure that his mother, Catarina, is devastated at the death of her precious little one, I am sure that she is comforted by the fact that Emilio passed away due to the course of his condition, rather than being murdered by doctors who had decided that caring for him was futile. One positive outcome from Emilio’s plight is that there will be a change in Texas’s Futile care laws that will give families more time to find another hospital and doctor when Their doctor gives up on them.

Goodbye precious Baby Emilio. May you rest in peace.

Bruce sent me this e-mail about the meeting with the AHA that he attended in Washington, DC. This is awsome!

From Bruce:

I have attended a lot of follow up meetings.  Sometimes we have had to wade through a lot of process and blah blah blah before we see results, but this was different.  Before we even showed up for today’s meeting with the American Hospital Association, they had already sent out letters to Senator Harkin and Representative Davis stating that they support the Community Choice Act!  
 
The AHA staff took our action very seriously and more importantly took action themselves… and they did so right away.  You can really see the power of ADAPT! 
 
At today’s meeting, the AHA also agreed to provide their state affiliates information about the Olmstead decision and Money Follows the Person and ask those affiliates to report back on their involvement with Olmstead planning at the state level.  Once they have that information, they will work with us to develop “next steps.” 
 
Until then, they are working with ADAPT to prepare an article for their bi-weekly publication that would explain our concerns regarding discharge planning and highlight some best practices that promote people living in their own homes.  This would be distributed to about 20,000 people, including Capital Hill.  They also agreed that ADAPT should have an opportunity to present to their members, but they want to consider the best place for that to happen.  They really wanted to make sure that that actual discharge planners got the message.  They were clearly moved by the personal stories we shared and seemed to want to make this a real partnership.
 
We need to make sure our local people hear what a powerful impact they had on the AHA. 
It was a great action and got great results!
 
FREE OUR PEOPLE!
 
Bruce Darling
 
The AHA letters read as follows:
 
On behalf of the American Hospital Association (AHA), and our nearly 5,000 member hospitals and health care systems, and our 37,000 individual members, I am writing to express our support for your bipartisan legislation, the Community Choice Act of 2007, S 799/HR 1621.
 
America’s hospitals are committed to providing quality care to the patients and communities they serve.  Part of that commitment means providing each patient with the right care at the right time in the right setting.  Hospitals understand that for some patients, the best place for a patient to receive care is not in a hospital or long-term care facility such as a nursing home.  Rather, the best place for a patient to receive care may be in their own home, in their own neighborhood where they can be among family and friends.
 
The Community Choice Act of 2007 looks to make important changes in how long-term care is delivered with state Medicaid programs by giving patients more choice for care than an institutional setting.  The proposed demonstration projects could give new insights into the best ways to provide community-based health care.  The AHA supports the important reforms for the Medicaid program that The Community Choice Act of 2007 promotes.  Programs to allow certain patients to remain in their homes with personal care services could benefit many and help hospitals keep their commitment of providing the right care for each patient.
 
We look forward to working with you on this important matter.  Please contact Megan Cudari at (202) 626-2268 if you have any questions.
 
Sincerely,
 
Rick Pollack
Executive Vice President

Below is an article on Robert Davila, the new president of Gallaudet University. I thought I’d post this to give an update of sorts on the happenings at Gallaudet since Jane Fernandes’s er, departure, if you will.

A Sense of Urgency at the Top
School’s New President Hasn’t Been Waiting on Ceremony

By Susan Kinzie

Wednesday, May 9, 2007

For a month after Robert Davila was named president of Gallaudet University in December, he didn’t leave campus. There was too much to do. He was taking on a school that spent much of the fall in chaos, shut down by protesters for days, venomously divided over the presidency. A federal agency had criticized the school for the deaf, and its accreditation was at risk.

Davila was 74 years old, with a grandfather’ s warm smile and funny stories, but instead of retiring, he was launching into the toughest job of his life.

The clock is ticking on accreditation, he said recently. “We have to do it, because, long term, the impact on the university is most serious. The consequences are too frightening to ignore.”

Today, Davila will be formally installed as president. And although the challenges are still daunting, the campus is already a different place from when he arrived.

A year ago, protests began over the selection of a president. Last fall, after building takeovers and arrests, the board terminated the appointment of Jane K. Fernandes, the former Gallaudet provost.

Davila, who is well liked on campus, wanted to rebuild trust and community, to get everyone invested in moving forward. He wanted to improve academic accountability. And he wanted to make sure enough students were enrolling and graduating.

The first thing he asked was how many students had left during the protests: about 100. In fall 2005, total enrollment was about 1,900; in 2006, about 1,800, before the protests. Enrollment is especially important for Gallaudet now that federal law ensures that deaf students can get interpreters at any school. That’s another reason that accreditation matters: Students have so many options.

Davila said he has made faculty members more involved in recruiting and retaining students and has strengthened a transition program for freshmen. Applications were down this spring. He said he hopes that in another year, the school will have regained lost ground.

Several professors said Davila has worked with faculty leaders to give them a stronger voice, including having them help choose the new provost, Stephen Weiner, an associate professor who was greeted with a standing ovation on campus Monday. Several professors praised Davila for working to solve problems rather than hide them.

“Davila is doing a great job,” said LaToya Plummer, a student and former protest leader, “taking things in his own hands and trying to get the community to work together.”

Davila has talked with students about issues that include their trouble communicating with campus security officers. Now officers will be required to know sign language and will have more interpreters.

Davila started regular video blogs, or vlogs, in sign language to update the campus on matters such as accreditation, which was postponed last fall by the Middle States Commission on Higher Education. By November 2008, the school must achieve compliance
with commission standards. It remains accredited in the meantime.

He is hiring someone to oversee institutional research, because the school has to prove that it is making progress.

He has critics, including people loyal to the previous administration. Some staff members said he has been too thin-skinned about criticism. But most people say he has made the place better.

He pulled a handful of pins that say “Team Gallaudet” out of his pocket the other day, rattling them around in his palm. When people ask to join, he kids them with a recital of the rules: “First, you are joining a team you can’t quit — you’re stuck on this team for life. Second, you have to do good things for Gallaudet. . . . Third, if you say anything about Gallaudet, and you have nothing good to say — say nothing.”

Almost no other university leader is being watched so closely and judged so much — by federal agencies, accreditors and by the deeply engaged and ever-blogging deaf community.

It is the timeline that worries him most. He took the job as an interim post, and he has a year and a half to reverse — or at least show positive trends in — decades-old problems such as graduation rates. “We don’t get rated for effort,” he said. “We get rated for outcomes.”

When he held an open meeting seeking volunteers to plunge into the issues, he expected 30, maybe 35. More than 150 signed up. Others have joined since. “I had to order a new set of pins,” he said. 

Source: Washington Post

CMS AWARDS GRANTS TO 13 STATES
FOR ALTERNATIVES TO NURSING HOME CARE

Thirteen states and the District of Columbia will get more than $547
million in grants over five years to build Medicaid long-term care
programs that will help keep people at home and out of institutions,
Leslie V. Norwalk, Acting Administrator of the Centers for Medicare and
Medicaid Services (CMS) announced today. 

Today’s awards are the second round of grants that will total  $1.75 billion over five years (2007-2011) to help shift Medicaid’s traditional emphasis on institutional care to a system offering greater choices that include home and community-based services. 

This “Money Follows the Person” initiative was included in the Deficit Reduction Act of 2005 (DRA), currently being implemented by CMS. It is a component of the administration’s New Freedom Initiative, a nationwide effort to remove barriers to community living for people of all ages with disabilities or chronic illnesses.

“There is more evidence than ever that people who need long-term care prefer to remain in their own homes and communities whenever possible,” said Ms. Norwalk. ”This new program will help states shift Medicaid’s traditional emphasis on institutional care to a system offering greater choices that include home-based services.

“States will also benefit by giving the elderly and people with disabilities more control over how and where they receive the Medicaid services they need.”

States expect to be able to move more than 14,000 people into community settings using these grant awards.

The Medicaid program traditionally pays for care for elderly and disabled individuals living in institutions who need help with activities of daily living. To fund home and community-based services, states must obtain waivers of normal program rules designed to pay for
care in institutions. 

“The concept of money following the person to the most appropriate setting improves beneficiary satisfaction while reducing Medicaid costs,” Ms. Norwalk said.  “We intend to keep taking steps to remove barriers and rebalance the options for Medicaid-funded long-term care.” States receiving grants today (see list below) will design programs with four major objectives:

*         Increase the use of home and community-based, rather than institutional, long-term care services;

*         Eliminate barriers or mechanisms that prevent Medicaid-eligible individuals from receiving support for appropriate and necessary long-term services in the settings of their choice;

*         Increase the ability of the state Medicaid program to assure continued provision of home and community based long-term care services to eligible individuals who choose to move from an institutional to a community setting; and

*         Ensure that procedures are in place to provide quality assurance for individuals receiving Medicaid home and community-based long-term care services and to provide for continuous quality improvement in such services. 

All states were eligible to participate in the five-year demonstration program and had to commit to provide demonstration services for at least two years.  

States receiving grant funds will qualify for a higher percentage of federal matching dollars to help cover the costs of moving people out of nursing homes and into community settings. The higher matching rate will be paid for one year after an individual moves out of an institution and into the community. The state must continue to provide community
services after that period as long as the person needs community services and is Medicaid eligible.

“These demonstration grants are a clear sign of our continued commitment to expand choice to all Medicaid beneficiaries as well as allowing them the independence to live at home and contribute to their communities,” said Ms. Norwalk.

For more details about the New Freedom Initiative, of which this demonstration is part, visit the CMS web site at:

http://www.cms.hhs.gov/newfreedom/. 

2007 MONEY FOLLOWS THE PERSON
REBALANCING DEMONSTRATION AWARDS

Award

State:
Transitions: 
Year One Award Amount:  
Five Year  Commitment:
     

Delaware

100
$132,537
$5,372,007
     
District of Columbia

1110
$2,546,569
$26,377,620
     
Georgia

1,347
$480,193
$34,091,671
     
Hawaii

415
$231,250
$10,263,736
     
Illinois

3,357
$6,879,166
$55,703,078
     
Kansas

934
$102,483
$36,787,453
     
Kentucky

431
$4,973,118
$49,831,580
     
Louisiana

760
$524,000
$30,963,664

New Jersey

590
$230,000
$30,300,000
     
North Carolina

552
$16,055
$16,897,391
     
North Dakota

110
$18,089
$8,945,209
     
Oregon

780
$80,785
$114,727,864 
     
Pennsylvania

2600
$130,609
$98,196,439
     
Virginia

1041
$13,793
$28,626,136
     
Totals

14127
$16,358,647
$547,083,848

Monday, May 21st will be the New York State Assembly’s Disability Awareness Day in Albany, the state capital. There will be a number of events taking place. Rochester’s own Bruce Darling will receive an award. There will be at least a vanload of us coming from Rochester for the event. Rest assured, i will let you know what happened!

Here are some links to videos, pics, and the like from the ADAPT action that Chris sent:

www.youtube.com/adaptvideo  - About 130 short clips, many featuring people from Rochester and many recorded by our Anita Cameron.

http://www.youtube.com/watch?v=hX8-wd9cwEA&mode=related&search= - a great video from inside the Rayburn building, just before the arrests begin.

The ADAPT Action Report — http://www.adapt.org/freeourpeople/aar/cca1/

I’ll let Chris sum up the week…

So – What DID we GET?

Throughout the day Wednesday, as all of ADAPT did Congressional visits, a few members went back to visit the staff of Chairman John Dingell.  Through the course of this meeting, which was not the most pleasant meeting ever, we did secure EXACTLY what we were asking for on Monday – a COMMITMENT to have a congressional hearing on the Community Choice Act during the fall of 2007! 

Meanwhile, Pennsylvania ADAPTers met with CCA sponsor Arlen Specter and got him to send a letter to the Senate Finance Committee requesting a hearing on the CCA in the Senate.  That evening, ADAPT received word that the Senate Finance Committee chair had agreed as well!  A Senate hearing on the CCA to take place in the fall of 2007!

HUD Secretary Alfonso Jackson agreed to find a way within HUD to reclaim vouchers that are supposed to be used specifically to transition people OUT of nursing facilities, but are currently being used as part of the general Section 8 pool.  Also, Secretary Jackson’s commitment to arrange a meeting between himself, ADAPT, and the House and Senate chairs of the committees overseeing accessible, affordable, integrated housing!  That meeting could be huge!

A commitment from the American Hospital Association to meet with ADAPT to discuss discharge procedures that will lead to people going HOME, instead of being forced into nursing facilities! 

And, at least one of our local Congressional Representatives committing to becoming a cosponsor of the Community Choice Act! 

A week of A LOT of WORK – and A LOT of ACCOMPLISHMENT!

Here is a link to Arlen Specter’s letter:

http://dread1mynproductions.com/specterletter.jpg

Day 4 was the day for scouring the Hill. We broke up into small groups and visited all 535 members of the House and Senate to give out information about the Community Choice Act. This included a DVD of the testimonials in Nashville, TN, by ADAPT members who had been in nursing homes and other institutions.

I found myself leading a group of five folks — two fellow Nation of Rochester folks, and three ADAPTers from Kansas. None of the group wanted to be the one to approach anyone, so I was the one on front street. We visited over twenty congressfolk, including my representative, Louise Slaughter, and John Shimkus, one of the ones who introduced the Community Choice Act. When we finished, those of us from Rochester got together to visit our congressfolks. I’ll let Chris and Arlene tell that story…

Wednesday May 2, 2007- Day Five

The Rochester ADAPT crew headed out on Wednesday, with advocates from other chapters, for legislative visits on Capitol Hill. We distributed information on the Community Choice Act, and a DVD of the 2006 hearings held by ADAPT in Nashville . Altogether, ADAPT visited the offices of all 535 members of Congress and the Senate!  And then we were done…or were we?

Q: What do you do in Washington , D.C. with a free afternoon?

A: Advocate!!

The Rochester found each other and pushed on, to meet with our local Congressional representatives:  Louise Slaughter, James Walsh, Tom Reynolds and Randy Kuhl.  Of these Representatives, Slaughter, Walsh and Kuhl were all previously cosponsors of MiCASSA and they have all been contacted already to ask them to become cosponsors of the Community Choice Act.  We figured that a personal visit from 40+ constituents might drive the massage home – this is important to us!

There were no conference rooms big enough to hold us all, so we met in the hallways outside the office.  First we met with Representative Reynolds’s Senior Legislative Aide.  Then we moved our entire group down ONE ELEVATOR, down a STEEP ramp, and up another elevator bank to line up outside Representative Walsh’s office.  After that harrowing experience, we brought the Congressional staff to us!

We met with representatives from Walsh, Slaughter and Kuhl.  Our members, including Pam Stover, Gene Spinning, and Christie Wilson, shared their powerful stories of being in forced into nursing homes and the need for more community based services – the need for the Community Choice Act! 

Just as we began to meet with Congresswoman Slaughter’s staff, Congressman Walsh came out to personally speak with our group.  After a brief conversation, he agreed to become a cosponsor of the Community Choice Act!! 

While the staff from Representatives Slaughter, Reynolds and Kuhl were also receptive, we will be following up to ensure their support.  We are optimistic about their support.

We ended with a Rochester meeting at the entrance to the Rayburn building– the very spot where we started this journey on Monday and Rochester ADAPTers had been arrested! (The Nation of Rochester likes symbolism!)

We had to let them know, one last time:

How do you spell power?  A - D - A - P - T

Here’s Arlene:

Tuesday- Day Three

The day started with a presentation by Alfonso Jackson, the Secretary of HUD. What was interesting was that the meeting was on ADAPT turf– and Secretary Jackson came to us! http://ngallery.adapt.org/displayimage.php?album=lastup&cat=10006&pos=5

While he did not come with housing vouchers in his pocket, he did come with a deadline for action– September 2007! So, the group pledge to hold him to his promise of housing vouchers and other actions that support the ADAPT Access Across American Campaign. He also spoke with Willie Daughtery, and shook, hands with Joe Wheeler! Next on the to do list– a midday stroll through the Capitol district!

Four hundred activists hit the streets of Washington, D.C. The focal point of today’s Washington, D.C. tour was the American Hospital Association. This organization’s practice of direct nursing home placement, without consumer assistance in returning to home, or provision of knowledge of community based service options perpetuates the institutional bias of the medical profession. This group of protesters filled the lobby of the building, and its environs, effectively shutting down the building. The goal - to seek a meeting with the CEO, to discuss processes for transitioning patients for return to the community. The group was able to have a meeting brokered by the Capitol Police. A promise of a meeting within thirty days was arranged, with the topic of discussion revamping the hospital discharge process, and the philosophy of it.

Before leaving, one of the Capitol police commended us for our work, being civil in our disobedience and shared his personal experience about a family member with a head injury. He wished us luck in our pursuit of a meeting, and stated that if they did not meet with us, he expects to see us back again next year. Hurrah! Tomorrow back to Capitol Hill!

Me:

My fellow jailbirds and I, along with all the other ADAPT folks were up early, and assembled in our meeting room to await the arrival of HUD Secretary, Alphonso Jackson. To be honest, I was unimpressed by his rhetoric; I’d heard it many times before, and I’ll believe it when he comes through with something tangible. Show me!

Next, we got ready to hit the American Hospital Association. They have a practice of discharging people with disabilities from the hospital straight to a nursing home, instead of the person’s own home. We wanted to meet with them to work on ending the practice. I was one of the one who took over the entrance to the undeground parking garage. needless to say, some folks who wanted in or out were not happy with us! We kept the chants and songs going loud and strong with the help of Todd, the resident ham.

Finally, Sgt. Constible, of the Capital Police, came down with Bruce to let us know that they were negotiating a meeting with the Vice-President and CEO. These folks did not want to come down to talk with us because they were literally, scared! They promised us a meeting in 30 days, but would not put it in writing, saying that they wanted to build a relationship of trust. Personally, I thought that it was bull, as they seemed to be the ones operating on fear, but oh well. One consolation is that if they mess with us, we know where their headquarters are, and we’ll be in that neighborhood in the fall.

Back to the hotel we went to prepare for the next day’s hard work.

Arlene first:

Monday- Day Three

The Rayburn House was the scene of disability power today, in Washignton DC. ADAPT, a disability civil rights group, was in full effect. The group was calling on the House of Representative to have hearings on the Community Choice Act. This bill has sponsors in the US Senate, but has received a tepid reception in the House. The Community Choice Act would fund home based, consumed directed care, as a viable alternative to nursing home placement. This alternative would save millions of dollars, and improve the quality of life for people with disabilities stuck in nursing homes.

The House of Representative police offerred no dialogue or discussion — three quick warnings, and they were arresting people in wheelchairs. Over one hundred people were taken into custody. (I found it interesting that they took more time to discuss using rubber gloves, in case of ‘contact’, than actual dialogue with the crowd or its representatives.)

The balance of the group– about three hundred people- gathered in a park across from the detainment center, and cheered on those who were brave enough to stand up for freedom and be arrested. As the afternoon heated up, into the 80’s, a small contingent (including Rochester ADAPT members Chris Hilderbrant, Arlene Wilson, Greg Sullivan, Pam Taggart, and Gremmie) braved the heat and humidity, to stand vigil.

The PD started to release group members at about 10:00pm. Those arrested included: Gene Spinning, Shelly Perrin, Bruce Daring, Sue Stahl, Debbie Bonomo, Anthony Griggs, Marlene Waldron, Pat Taggart and others…

My turn:

We lined up bright and early to begin the day’s work. I was part of a group that was “going in”, if you will, so we gathered a little apart from the others. At the signal, we headed towards the Rayburn Building. ADAPT was going there to demand that the House Energy and Commerce Committe schedule hearings on the Community Choice Act, formerly MiCASSA, which had not had a hearing in almost ten years.

Sine my group was “going all the way”, we filed through security with information in hand, ostensibly to make some legislative visits. The House Energy and Commerce hearing room is only a few feet from security, and since we could not get into the room, we immediately blocked the doors, chanting loudly.

Of course, that brought outraged folks in suits out demanding that we cease because we were scaring innocent teenagers who were having an event inside the hearing room “learning about democracy”, as someone put it. We countered that the students were learning the real deal about democracy by our being there, but we did agree to back up from the doors and let them out. It was interesting that the kids weren’t scared at all. They were fascinated at seeing so many people with disabilities. I believe that it was the adults who were the scaredy-cats.

Back in front of the hearing room doors, we began singing, “raising our voice for Community Choice”. This went on for a while, and the cops didn’t really seem to mind. It was when we began chanting it in a loud call and response that they began to get agitated. They quickly got on bullhorns to announce the warnings, but each time, ADAPTers drowned them out. Then, the arrests began.

When it was my turn, I was tagged, and led out, still chanting. The officer took me around a corner, and down a long sidewalk. Across the street, I could hear the cheers of ADAPT folks, who happened to see me as I was pushed by. They called my name and chanted, and of course, I chanted back.

The officer, who was actually quite nice, took me down into the bowels of an underground parking lot, where I joined fellow ADAPTers who’d already been arrested. The police had us divided into color groups of their own — green, pink, yellow, and white, based on different arrest scenarios. Though I was pink, I managed to get out of my color group, and visit with other folks in other police-designated color groups. I even managed to surriptitiously take a few pictures and videos with my cell phone before I was busted, and told to put the phone away. By the time the dust cleared, and all was said and done, 99 of us were in the “jail”, which was the parking lot for all manner of police vehicles, including cars, bikes, and motorcycles. I was number 59. Several of us were first-time arrestees. This was my 113th arrest with ADAPT in 20 years.

The booking procedure was deliberately long and slow, and many of us were suffering from the carbon monoxide from the comings and goings of police vehicles. The only consolation was that they were suffering, too. The smokers in our group were really suffering, and I felt bad for them. We finally had out belongings taken and tagged. As I was doing this, my cell phone rang, and the officer let me answer it. It was Pam Taggart, who was worried for us, and for her twin sister, Pat, who had been arrested with us. I assured her that everything was ok, then went to check on Pat, who, of course, was fine. Afterwards, I spent the time napping, and talking with everyone. I also kept watch on the first-timers to make sure that they were ok, and hung out with fellow Nation of Rochester ADAPT members. Other than that, there was nothing to do.

Finally, about 1:30 am, I was let loose. Just outside, a contingent of hardy ADAPTers were waiting for us. I was glad to see Chris, and especially, Dean, my fellow Advocacy Crew member, as this was his very first ADAPT action. My homegirl, Dawn was there also, and when the others left to take some folks back to the hotel, I stayed with her and helped keep count of the paperwork and all, until everyone was out, which was about 2:30. We then headed back for the hotel, where other ADAPTers and pizza were waiting. I finally crawled into bed about 4:00 am.

Dale and Claude in Jail