Picture of Group Leaders and members.
Brain Injury Support Group Alliance
Peer-to-Peer Support in Action
 

Contact us    Archives    Site Map 

Newsletter sign-up  Receive the free email newsletter, "B-News - Support Lines"

 

Home
Up
Tools
Site Map
Support Groups
B-NEWS
Resources/Links
NEWS
Education

 

Support The I AM Foundation's Free Books and Music
Free Books & Music

 

 

Back Up Next

September 2003 Newsletter Archives

Sign up for our newsletter here

 

September 8, 2003 testing listserv (1)

September 8, 2003 testing listserv (2)

September 10, 2003

September 12, 2003

September 18, 2003

September 25, 2003

 

 

 

Date:   Mon, 8 Sep 2003 19:20:23 -0400
Reply-To:   John Pistorius <johntheone@NETZERO.COM>
From:   John Pistorius <johntheone@NETZERO.COM>
Subject:   testing our server
Content-Type:   multipart/alternative;

Please disregard this message. It is only a test.

John Pistorius

*********************************************** The PABIA-NEWS mailing list is sponsored by L-Soft international, Inc and powered by L-Soft's renowned LISTSERV(R) list management software. For more information, go to: http://www.lsoft.com/LISTSERV-powered.html


 

Date:   Mon, 8 Sep 2003 20:40:24 -0400
Reply-To:   John Pistorius <jp@PABIA.ORG>
From:   John Pistorius <jp@PABIA.ORG>
Subject:   Another test (hopefully the last)
Content-Type:   multipart/alternative;

Please ignore this message and forgive the intrusion. We are updating our send from address for the PABIA-NEWS.

John Pistorius

*********************************************** The PABIA-NEWS mailing list is sponsored by L-Soft international, Inc and powered by L-Soft's renowned LISTSERV(R) list management software. For more information, go to: http://www.lsoft.com/LISTSERV-powered.html


Date:   Wed, 10 Sep 2003 07:23:57 -0400
Reply-To:   John Pistorius <jp@PABIA.ORG>
From:   John Pistorius <jp@PABIA.ORG>
Subject:   Day Five- Free Our People- Update
Content-Type:   multipart/related; type="multipart/alternative";

[multipart/alternative]


Day 01 Hello Everyone,

If your browser does not support viewing this page, please visit http://www.freeourpeople.org/ to read the updates and view the pictures.

Please forward this message to anyone you believe would be interested in receiving it.

John Pistorius

A D A P T Home |

A D A P T Action Report |

Site Index | Tom Olin's Photographs | Send a Message to the Marchers | View all the messages sent to the Marchers | Profiles of Marchers | Press Room | DAY 1 | DAY 2 | DAY 3 | DAY 4 | DAY 5 | Thumbnails below are linked to larger photos. September 8, 2003

The Free Our People March Enters Maryland (Church of the Nazarene Camp, Northeast Maryland) At dinner Bob Kafka announced to the Free Our People Marchers that he had a call from the Governor welcoming ADAPT to Maryland. The March has moved from the very urban setting in downtown Philadelphia to this rural setting along the Chesapeake Bay on pace and in high spirits as the march on Congress continues.

At 9:10 this morning in Delaware Bob yelled "ten minutes" to the group as a signal for marchers to wait for someone to yell "it's time to go." At 9:34 the Free Our People March moved out. Following the column of marchers, with a variety of police vehicles, were two vans, one for logistical support and the other to pick-up stalled or broken-down marchers along the way.

By the time the marchers leave most of the work to break camp is done. The crew has taken down all the tents and packed them away. The city of over 50 large tents is transformed into a dozen piles of multi-color nylon bags.

"People were a little feisty yesterday," said Lowell Aird of Boulder who is on the breakdown crew, "but we are getting to know how to do the tents."

"Set-up and break-down is going great, real smooth," said Cecil Walker of Texas who is the 'tent wrangler.' "It takes about two hours to tear down and four to five to set up. I have to admit, it is going smoother than I thought it would."

The crew averages 8 to 10 people with many more joining us in Baltimore. The crew must deal with 50 tents, 10 vehicles, two 18 foot, one ten foot trailer and a 350-gallon water tank. More marchers will also join in Baltimore so that the overall job will also expand.

"The biggest problem is getting volunteers," said Cecil, "I have started to take volunteers like the military: You just volunteered, and you and you."

Each day the tents are taken down and repacked with the proper poles and stakes. Typically the cots and sleeping bags would accompany the tent, but because the next stop is the summer campsite, Cecil instructed the breakdown crew to change the assembly - tents and cots together, and sleeping bags and personal items in another pile.

On the road, the march itself is an interesting thing to see coordinated. The font and back of the column of marchers communicate on pace and issues with the State Patrol by radio. Usually, the marchers move in a single-file line, but sometime the State Patrol will ask the Marchers to "bunch up." The group will fall into a two by two line that takes up about half of the distance from front to rear, but more space in the lane.

If someone has a problem with their wheelchair, the move to the side where a trailing van can pick them up. Often when there is a hole in the pavement or some dangerous barrier. The first available person to it will park their wheelchair over the obstruction and fall back into line at the end when everyone has passed.

As we entered Maryland and Cecil County, Denise Sarsfield met us on the side of the road with a sign cheering us on. Crossing the state line was a satisfying feeling, and it was great seeing people cheering us on along the way. Almost exclusively, the response from the general public along the route has been very positive. People are always honking and waving. As we pass through towns, there are people that stop what they are doing to urge us on. A day care center in Elkton, Maryland lined all the children along the fence to wave as the Free Our People March passed by.

Delaware had provided a truck to follow us with a large flashing arrow to warn traffic coming up behind us. We did not know what Maryland had in store for our escort until we crossed the state line and found two trucks with warning arrows waiting for us. The Maryland State Troopers provide an escort with automobiles and a motorcycle.

Clearly the long line of marchers slows traffic, but the State Troopers have made the delay as minimal as possible and very safe. Most importantly, the people delayed do not show their frustration. I am sure that there are plenty of irritated drivers, but the support shown by the public overwhelms any disapproving actions.

At lunchtime the group stopped in a parking lot and squeezed into the shade. Generally we stop for about one hour for lunch. When the marchers get to the lunch spot, accessible portable toilets have been setup and waiting for us. Lunch was a little late in arriving, but we still made it back on the road quickly.

Generally, the column does not stop once it is in route; but some long hills caused us to take short breaks on the shoulder of the highway. This allows everyone a chance to drink some water and to be ready to climb the hill together.

The Church of the Nazarene is a summer camp for youth but it fits our civil rights march needs. There were more than enough rooms, most people wanted to share their room with others. The Camp also fed us in the dining hall following the march. We had fried chicken, macaroni and cheese, vegetarian lasagna and green beans.

One third of the trip is now behind us.

- Tim Wheat

The National ADAPT website | The ADAPT Action Report | MiCASSA Information F R E E O U R P E O P L E Get the official ADAPT Free Our People T-Shirt. T-Shirt Order Form.

ADAPT's FREE OUR PEOPLE "Songs of Freedom." CD Order Form. www.harveyfinkle.com

Please send your ideas for added accessibility to: webmaster@freeourpeople.org

©2003 etc. information

To subscribe or unsubscribe from the PABIA-NEWS visit http://www.pabia.org and click the subscribe link to be taken to our sign-up and unsubscribe page.

*********************************************** The PABIA-NEWS mailing list is sponsored by L-Soft international, Inc and powered by L-Soft's renowned LISTSERV(R) list management software. For more information, go to: http://www.lsoft.com/LISTSERV-powered.html

 


 

PABIA-NEWS, September 2003

Early Edition

Final Edition


Hello everyone,
 
First I welcome Deborah and Jeffrey and thank you for subscribing to the PABIA-News, electronic newsletter.  You are our newest subscribers. 
 
To the wonderful folks that I met in Monroeville Thursday night, I welcome you to subscribe to our newsletter by following the directions that are included at the end of this message or visiting the http://www.pabia.org website and clicking through the newsletter sign-up link. 
 
I respect the privacy of our subscribers and will never share your email address with anyone for any reason except if you ask me to.
 
I'm forwarding the latest edition of our newsletter to you.  It was originally sent out Friday, September 12, 2003 at 8:12 am.
 
In service,
 
John Pistorius
 
----- Original Message -----
Sent: Friday, September 12, 2003 8:12 AM
Subject: September 2003 PABIA NEWS Early Edition

 

Visit us on the web at http://www.pabia.org/
Feel Free to Forward this Message to anyone you believe might be interested.

Beyond SurvivorBarrier Free

 


Inside:

  • New Monroeville Meeting Success
  • New Meeting Scheduled at HealthSouth, Harmarville
  • Free Our People March Update (Day 7, past the half way point)
  • Pittsburgh Area Brain Injury Alliance Offers Free Web Space to Local TBI Peer Groups 
  • PABIA Getting Press
  • Subscribe/Unsubscribe instructions

Monroeville Meeting Success
Eight people attended the newest Peer Support meeting last night, September 11, 2003.  This meeting was held in the Parlor of the Cross Roads Presbyterian Church, 2310 Haymaker Road, Monroeville, PA.  The attendees came from many different walks of life.  The room was well lit, with neutral decor and very comfortable seating. 
 
After introducing himself, Paul Damon introduced his daughter, Denise Patterson.  Patterson shared a brief paragraph she wrote about the need for understanding TBI and people who are recovering.
 
Malin Lowenadler-Shadel proceeded to ask attendees to share their ideas about what they wanted to receive from the new meeting.  The discussion was spirited as each person related their particular concerns, successes and struggles.
 
Paul Damon then turned the attention of the participants to the featured speaker, John Pistorius.  John shared his insights about peer support and gave a brief history of the Pittsburgh Area Brain Injury Alliance.  He stressed the idea that peer support is about people helping people to overcome barriers in their daily lives and barriers to their full participation in society.  Pistorius said "Every person living in the greatest nation on God's green Earth, deserve to be treated with dignity." and "If we didn't do this, who would?"  In response to a question about how to 'Get the word out' about the new peer group, he gave a list of ideas;
  • Timely regular press releases (which he agreed to help to create.)
  • Meeting notice to each of the attendees.
  • Bold meeting notices to be consistently posted  in attendees and facilitators' grocery stores, doctor's offices, place of business, workplace, local hospital emergency rooms and any other public place that will permit posting.
  • Notices to area churches with a request to be included in the church newsletter or bulletin.
  • Creating and sending fact brochures to local Congresspersons, Senators, State Representatives and other government officials.
  • Letters and brochures to local Emergency Medical Technicians.
  • Free ads in the print publications that provide that service such as the Free Ads Trader and Tribune Review.
Paul Damon told participants that he, his daughter and PABIA Coordinator, Ed Crinnion were videotaped for the local cable television station.  Mr. Crinnion promised to share a copy of the taping once it is in his possession.
 
The meeting concluded with the attendees interacting with each other and sharing contact information.
 
The next meeting of the Monroeville Peer Support Group of the PABIA is scheduled for Thursday, October 9, 2003.
 

HealthSouth Harmarville Meeting Planned
 
The PABIA support group development committee met with members of the staff at HealthSouth Harmarville several times to arrange the use of meeting space and assistance in establishing a peer support group there. 
 
Tom Byrnes of Brain Injury Management Services agreed to facilitate the meetings indefinitely.  Harmarville staff committed hands-on support for six months and meeting space for so long as the group continues to succeed.  John Pistorius and Malin Lowenadler-Shadel offered to continue to provide assistance as needed.
 
The first meeting is scheduled for October 14, 2003 from 7 - 9 pm.  John Pistorius and Malin Lowenadler-Shadel will be the featured speakers.
 
For more information, please contact John at 412.481.5482.
 
 

 
Day 7, 2003 Free Our People March
Past the Half way point.
 
This is a momentous occasion.  The image of electric wheel chairs and scooters hooked up to a massive network of electric power supply cords has burned an indelible impression in the mind of this editor.  My heart is with the marchers as they battle the elements, the barriers and continue their march for freedom.  They are making history.  My prayers are with them for traveling mercy, safety and health as they show the world the courage and tenacity that made this country great.
-John Pistorius
 
 
 

PABIA Offers Free Space on The Web
Local Peer Support Groups urged to reach a larger audience on the World Wide Web
 
PABIA webmaster, John Pistorius has volunteered his time to create a web page within the pabia.org website for groups to place items of interest about their meetings, events and gatherings.  TBI peer group facilitators are asked to contact Pistorius with their information. 
 
The http://www.pabia.org website is funded solely by the generosity of PABIA Coordinator, Ed Crinnion who recently upgraded the PABIA web server package to accommodate the expected increased need for server space.
 
Please contact John Pistorius at jp@pabia.org with your submissions or to receive more information.
 
 

 
PABIA Getting Press
 
Ed Crinnion, Coordinator of the Pittsburgh Area Brain Injury Alliance, Paul Damon, Coordinator of the Westmoreland County group and co-facilitator of the new Monroeville group and Denise Patterson, co-facilitator of the new Monroeville Peer group were featured in a videotape that will be aired regularly on the local Aldelphia cable television station.
 
In the fifteen minute tape, Crinnion, Damon and Patterson express the need for better understanding of TBI in society and they share insights into how peer support benefits people.
 
For more information about the air times of this taping, please contact Ed Crinnion at 412.761.9870 or Paul Damon at 412.372.2888
 

 
   Subscribe or Unsubscribe From The Pittsburgh Area Brain Injury Alliance Electronic News List
 
  * TO JOIN THE LIST *
 
Send a blank email to:  PABIA-NEWS-SUBSCRIBE-REQUEST@LISTSERV.TBINET.ORG (your Subject: line may say JOIN)
 
  * TO BE REMOVED  *
 
Please remember you may remove yourself from this list (unsubscribe) at any time by sending a blank email to PABIA-NEWS-SIGNOFF-REQUEST@LISTSERV.TBINET.ORG (your  Subject: line may say REMOVE)
 
You can also visit our http://www.pabia.org website and click the newsletter link that leads to the List Server page designed for  subscribe or unsubscribe requests.
 
If you know of anyone who would enjoy receiving this publication, please forward this message to them.
 

Date:   Thu, 18 Sep 2003 21:17:44 -0400
Reply-To:   John Pistorius <jp@PABIA.ORG>
From:   John Pistorius <jp@PABIA.ORG>
Subject:   Update-Day 14, Free Our People March
Content-Type:   multipart/related; type="multipart/alternative";

[multipart/alternative]


Day 01 Shell A D A P T Home |

A D A P T Action Report |

Site Index | Tom Olin's Photographs | Send a Message to the Marchers | View all the messages sent to the Marchers | Profiles of Marchers | Press Room | DAY 1 | DAY 2 | DAY 3 | DAY 4 | DAY 5 | DAY 6 | DAY 7 | DAY 8 | DAY 9 | DAY 10 | DAY 11 | DAY 12 | DAY 13 | DAY 14 | Rally | Thumbnails below are linked to larger photos. September 17, 2003

"The Journey is not over until Congress passes MiCASSA." - Bob Liston (WASHINGTON DC) The Free Our People March entered Upper Senate Park over 500 strong. The group of 200 people with disabilities that marched 144 miles from Philadelphia, through Baltimore to Washington DC were joined by another 350 who had rode the Free Our People Train that left New York to rally support for MiCASSA.

"You are the loudest voices of empowerment, the revolutionaries of the Twenty-First Century, you are America the Beautiful," said Yoshiko Dart. "We will continue to march and fight to the end of time to Free Our People."

MiCASSA, the Medicaid Community Attendant Services and Supports Act, is federal legislation to end the bias in long-term care funding that causes nursing homes and institutions to dominate how Americans receive services. Nursing homes are the most expensive and least desirable form of long-term care.

"Where I am from in Montana, a city of 200 people is considered a metropolitan area," said Bob Liston the co-chair of the Free Our People March. "This metro-area moved 7-16 miles per day. The trials and tribulations that we faced were nothing like what people in institutions go through."

Bob Kafka of ADAPT acted as master of ceremonies for the Rally and first introduced Bob Liston, the co-chair of the Free Our People March. Bob and Nancy Salandra have worked a year putting the Free Our People March together, raising money and negotiating to see the event take place and have the powerful impact. Bob Liston, who marched the entire way from Philadelphia, ended his comments by stating that the journey is not over until Congress passes MiCASSA.

"The door needs to be open so that people will have choices," said Senator Tom Harkin, an original co-sponsor of MiCASSA. "It is long past time that people could be in their own homes, not somebody else's nursing home."

Sen. Harkin is seen as a leading advocate for the bill. He passionately supports MiCASSA and tells of personal instances where discrimination and institutionalization, because of disability, has impacted his life. Sen. Harkin said that the 1990 Americans with Disabilities Act was never a partisan issue and made a strong declaration that MiCASSA was not partisan legislation.

"Seventy percent of funding for nursing homes is fundamentally unfair," said Arlen Spector, Republican Senator from Pennsylvania and co-sponsor of MiCASSA, "keep plugging and one day we will win this thing."

Representatives Danny Davis, John Shimkus and Dennis Morris together took the stage to rally support for MiCASSA in the House. Each insisted that everyone keep pressuring Congress. Rep. Morris brought a guitar and sang "This Land is Your Land," which he also implied should be the national anthem.

"Still more than two million Americans are locked behind institutional doors," said Stephanie Thomas of ADAPT. Pointing to the capitol dome she continued: "Those people have the key to that door. We have to step up the pressure and keep it up. Call your Senators and Representatives and tell them that if Newt Gingrich and Senator Kennedy can get behind this bill, there is no reason why you cannot."

Cecil Walker, working hard on the march behind the scenes joined the marchers for today and spoke at the rally urging Congress to pass MiCASSA.

"We are breaking the chains of fear," said Frank Lozano of El Paso, Texas, "The March intended to change the image of people with disabilities from charity cases into powerful people."

"I love ADAPT like my family. We will fight until we get it, and I will be with you; I love you all," said John Gladstone.

"Everyone along the route supported us," said Mike Oxford, a Free Our People Marcher representing NCIL. "The law of the land is out of touch with the people. Congresses failure to act shows that they are out of touch."

"We will stand and fight with you in the fight for civil rights and justice" said Anna Burger from SEIU.

Terri Galloway did an impression of Scary Lewis, a parody of Jerry Lewis. The character was shocking, loud and ignorant of insulting and demeaning behavior; just like Jerry Lewis.

"Your presence here in Washington is a powerful one," said James Landerman, a co-sponsor of MiCASSA. "People with disabilities not being included is a national disgrace."

The rally ended with Johnny Crescendo singing the powerful song: "Tear Down the Walls."

- Tim Wheat

Read about the final day of the Free Our People March. The National ADAPT website | The ADAPT Action Report | MiCASSA Information F R E E O U R P E O P L E Get the official ADAPT Free Our People T-Shirt. T-Shirt Order Form.

ADAPT's FREE OUR PEOPLE "Songs of Freedom." CD Order Form.

Original artwork from the Free Our People March - By Sher Stewart. Photos of her work. www.harveyfinkle.com

Please send your ideas for added accessibility to: webmaster@freeourpeople.org

©2003 etc. information

Subscribe/Unsubscribe to or from the PABIA-NEWS list at http://www.pabia.org/

*********************************************** The PABIA-NEWS mailing list is sponsored by L-Soft international, Inc and powered by L-Soft's renowned LISTSERV(R) list management software. For more information, go to: http://www.lsoft.com/LISTSERV-powered.html


[text/html]

freelogo2.jpg [image/jpeg]

d14.jpg [image/jpeg]

fop14b_027_small.jpg [image/jpeg]

fop14b_028_small.jpg [image/jpeg]

fop14b_037_small.jpg [image/jpeg]

fop14b_039_small.jpg [image/jpeg]

fop14b_042_small.jpg [image/jpeg]

fop14b_044_small.jpg [image/jpeg]

fop14b_071_small.jpg [image/jpeg]

fop14b_077_small.jpg [image/jpeg]

fop14b_087_small.jpg [image/jpeg]

fop14b_097_small.jpg [image/jpeg]

fop14b_104_small.jpg [image/jpeg]

fop14b_125_small.jpg [image/jpeg]

fop14b_143_small.jpg [image/jpeg]

fop14b_144_small.jpg [image/jpeg]

insety1.jpg [image/jpeg]

inset051.jpg [image/jpeg]

inset060.jpg [image/jpeg]

freemix1.jpg [image/jpeg]

tshirtx3a.JPG [image/jpeg]

approved.gif [image/gif]

freelogo1.jpg [image/jpeg]

navlogo.gif [image/gif]


 

----- Original Message -----
Sent: Thursday, September 25, 2003 1:02 AM
Subject: September 2003, PABIA-NEWS Support Lines Final Edition
 
September, 2003
Visit us on the web at http://www.pabia.org/
Feel Free to Forward this Message to anyone you believe might be interested.

Beyond Survivor

 Barrier Free


 

Inside:

  • New Local Peer Meetings Scheduled
  • Talk Back Mail Bag
  • Essay: Survivors Recovering
  • MiCASSA, Questions Answered 
  • Pittsburgh Area Brain Injury Alliance Meeting Notice
  • Article: 12 Ways to Keep Negotiations Rolling
  • Link to FREE OUR PEOPLE “Songs of Freedom” CD Order Form 
  • Subscribe/Unsubscribe instructions

New Local Peer Group Meetings Scheduled
  • Next Monroeville Peer Support Gathering
    • Meeting Date: THURSDAY, October 9, 2003
    • Time: 7 to 9 pm
    • Place: CROSS ROADS PRESBYTERIAN CHURCH, 2310 HAYMAKER ROAD, MONROEVILLE, PA
    • Topic:  Peer Support

Contact: Paul Damon, 412-372-2888 Denise Patterson at Deenomad@aol.com

  • HealthSouth Harmarville Meeting
    • Meeting Date: Tuesday, October 14, 2003
    • Time: 7 to 9 pm
    • Place: McLaughlin Education Center at HealthSouth Harmarville Rehabilitation Hospital, Guys Run Road (Indiana Twp.), Pittsburgh.  
    • Topic: Peer Support
Contact: John Pistorius, 412.481.5482 or email jp@pabia.org.
 

Talk Back
Mail Bag
 
Sunset
 
Are you interested in sharing your opinion?  Do you have an issue you want to learn more about?  Do you have a survival strategy that you want to share?  Here is your space.  Write to us at jp@pabia.org to share your ideas, thoughts and comments.  Don't let the sun set without expressing yourself.  All letters will be answered.  The following comments and more were submitted after the last edition of the PABIA-NEWS.
  • I just wanted to complement you on this letter. I think you did a great job in writing it and the photos you selected , made it even better. -Lena Lowenadler
  • Very Nice-Andrea Williams
  • Hey John, would you mind if I posted on my website what you sent me in emails?  I am going to try my best to post what goes on around the country for TBI survivors.  I would post it somewhere on A TBI's Corner, http://www.angelfire.com/ok5/survivorok/enter.html  -Alicia
  • EXCELLENT! -Barb Dively, BIAPA

 
Survivors Recovering
John Pistorius
 
Many people succeed in their recovery after TBI, while some become stuck.  Some 'make it' in society and others do not.
What makes the difference?  I believe many factors influence the outcome and recovery potential of individuals who experience Brain Injury.  Not the least of which is the attitude of the person.
 
Some people get stuck on the victim page of their recovery.  Everything becomes personal.  (It's all about them) Society has  reacted to their post TBI situations.  Also, many people lose every sense of their identity.  Often, the person loses employment, schooling, family and friends they identified with being who they are. Their families, friends, and most importantly, the people who sell the TBI Badge or label react to their changes also.
 
No More Labels
 
The purveyors of Brain Injury badges and labels are oftentimes well meaning people.  Some are called doctors and lawyers and nurses and rehab professionals.  Others are called Mom, Dad, husband or wife.  Sadly, even some of the people who are recovering from TBI buy, sell and trade disempowering labels.  I believe that it is immoral to sell the labels and badges.  It is equally immoral to buy them and maintain some kind of victim mentality.  In my years of volunteering within the various Brain Injury Support organizations, I noticed that some people didn't buy them, lost them or just plain forgot that they had bought one once. 
 
End Victimization 
 
Some people receive a payoff for remaining 'sick' or 'injured' or 'disabled.'  The people who truly recover do not accept the payoff as a fair trade.  They push the barriers.  They find ways to overcome the obstacles.  These people are the true survivors.  They strive to become Barrier Free.
 
For many people, recovery can be affected by the severity of the injuries sustained.  However, I've personally met people who were labeled 'vegetables' who have returned to fully productive lives.  (What's with that 'vegetable' term anyway?  These are PEOPLE!  First and foremost.  They are not disposable.  The people who are labeled 'vegetative' are individual human beings with intrinsic value.  Let's get that straight.)
 
Become Barrier Free
Were the early predictions about the condition of people who recover and lead productive lives wrong? NO. These folks simply refused to stay there. They have moved forward. Even though it hurt and sometimes still does. They are not victims. They have survived the hard part and are overcoming obstacles daily. That doesn't mean that they are fully able. No. They have their 'disabilities' or inabilities. But that does not stop them from being and becoming the best they can be.  Everyone is different and all have varying potential for overcoming the barriers to recovery.

The effort expended to continue to work beyond the obstacles is rewarded with freedom and a strong sense of accomplishment. The people who strive to overcome barriers in their recovery process are a benefit to our society. Everyone has varying abilities. No one needs to be left behind. But so many people want to be left there. It might be a character-related flaw that makes one person exceed all expectations while others accept the prognosis and never even attempt to step beyond the barriers that medical company employees and the rest of our society create. I am sick with that too. They hold themselves down. Sometimes their families hold on to them out of fear. Society is designed by default to restrict people with any type of disability. We are a visual oriented society. Everything happens in 30-60 seconds and 30-60 minutes. If it takes longer than that, we do not have the patience to wait. But some folks lose all sense of the 'norm' and blow past every limit placed upon them.

Recovery from TBI is a lifetime process.

Our society projects 'normal' images via the media. Yet nothing is normal about the images and ideas which are delivered by the media. That brings a whole big mess into the recovery equation. Many people are influenced by the televised messages of normalcy that are projected into their brains daily without filtering. This leads many to struggle with their own reality because of their comparison to the fantasies that they view via television programming, newspapers, magazines and movies. No one can become their fullest in recovery unless they release themselves to become whatever it is that they are capable of becoming. That is the beauty of recovery after TBI. In many cases, the person receives a fresh start or 'clean slate.' If they agree to work with this clean canvas, the possibilities are endless.

Nevertheless, it is sometimes too easy for individuals to become slackers, since family/society is caring for them at this point in their recovery. We are selfish by design. We seek to satisfy our needs. Human beings are easily persuaded to turn their eyes upon themselves. We are driven by natural urges for food, shelter, warmth, love and affection. Sometimes fear can motivate us to settle for the method in which our society provides these basic needs after a Traumatic Brain Injury. Oftentimes the person is left out of the decision making process. That can lead to feelings of hopelessness, frustration and despair, none of which are empowering emotions.

Anybody with real feelings, thoughts and life, can understand why people become frustrated. Whenever someone is not getting any enjoyment from or say in what their life is about, they become complacent or they fight back. When an individual fights what the system is stuffing down their throat, they are labeled as noncompliant, disagreeable or unacceptable. When the person becomes complacent, instead of growing and becoming all that they can be, their recovery potential is further reduced by their own unwillingness to recover. This can be because they might not believe they can overcome the obstacle or they might not know that it is possible. If the person is further reduced by language barriers, they might even buy into the 'less than' mentality because they are unable to articulate their wants, needs and desires.

Too often, mothers and others focus on weaknesses and the things that do not work. And this is taught by our medical service companies too. They look for things that are different from their perceived 'norm' and they create ways to fix what they can. Then, only the most enlightened or stubborn people can recover beyond the prognosis because they push the limits. Break the limits! Let us teach people to break the barriers! Let us be an example to the people. Let us help them to figure out what they can do best. Or at least, let us help them to even believe they can take another small step. Sometimes the barriers make powerful stepping stones.

If a person has success in anything, let them do what they enjoy and are good at doing!

This is the essence of peer support, helping people to make connections to improve their lives and recovery. I've seen something that many people have yet to realize. Each person has abilities. They can use their abilities and pursue improving upon them and lead a productive, happy life. The possibilities are almost endless if they are sought. If not, the person remains frustrated and in worst case scenarios, could lash out at society and become incarcerated.

Freedom is a Progressive Verb

I have seen and felt the hatred people have toward what they are forced to do. And yes, that has to stop! It should be classified as abuse. When a person hates their life's situation, and they have no easy way to remove themselves from it, they can become deeply depressed or they can get motivated to make change happen. Too many people slip into depression and become stagnant in their recovery. Some individuals use their energy to benefit themselves, others and society by becoming all that they can be within the framework of their post injury abilities. Some people step out of the mold that they are squeezed into by the systems of our society. I encourage them to become. Some of them are. Others remain stuck.

Oftentimes, the reasons people give for not overcoming barriers are the very things that they can use to enhance their recovery. Yet as we lead the horses to water, we cannot take their heads and force them to drink of the life that is so abundantly available to them. But ignorance, complacency and reluctance do not stop the true leaders from continuing to lead the people.  And so we move forward.  Thanks to you who continue to forge new pathways for all who will follow.


 
MiCASSA
Questions Answered about the Medicaid Community Attendant Services And Supports Act (MiCASSA)
 
(editors note:  Most of Medicaid long term care dollars pay for institutional services, while a meager 25% is allocated for community based waivers, optional programs, etc. It is time to free people from the playdough-like mold that the current method of service delivery forces them through and give freedom of choice real meaning.)
 
 
1. How are community attendant services and supports defined in MiCASSA?

In MiCASSA, the term community attendant services and supports means help with accomplishing activities of daily living (eating, toileting, grooming, dressing, bathing, and transferring) instrumental activities of daily living (meal preparation, managing finances, shopping, household chores, phoning, and participating in the community), and health-related functions (which can be delegated or assigned as allowed by state law). These can be done through hands-on assistance, supervision and/or cueing. They also include help with learning, keeping and enhancing skills to accomplish such activities.

These services and supports, which include back-up, are designed and delivered under a plan that is based on a functional needs assessment and agreed to by the individual. In addition they are furnished by attendants who are selected, managed, and dismissed by the individual, and include voluntary training for the individual on supervising attendants.

MiCASSA specifically states that services should be delivered, "in the most integrated setting appropriate to the needs of the individual" in a home or community setting, which may include a school, workplace, or recreation or religious facility.

2. If someone can't manage their attendant services completely independently are they still eligible for MiCASSA services?

Yes! People who have difficulty managing their services themselves, due to a cognitive disability for example, can have assistance from a representative, like a parent, a family member, a guardian, an advocate, or other authorized person.

3. Do you have to be impoverished to be eligible for MiCASSA?

No. If you are eligible to go into a nursing home or an ICF-MR facility you would be eligible for MiCASSA. Financial eligibility for nursing homes is up to 300% of the SSI level (roughly $1,500 for a single person). In addition, states can choose to have a sliding fee scale for people of higher incomes; MiCASSA specifically references this as an incentive for employment. This sliding fee scale can go beyond the current Medicaid eligibility guidelines.

4. Is MiCASSA biased towards an agency delivery model?

No. MiCASSA assumes that one size does not fit all. It allows the maximum amount of control preferred by the individual with the disability. Options include: vouchers, direct cash payments or a fiscal agent, in addition to agency delivered services. In all these delivery models the individual has the ability to select, manage and control his/her attendant services and supports, as well as help develop his/her service plan. Choice and control are key concepts, regardless of who serves as the employer of record.

5. Will MiCASSA replace existing community-based programs?

MiCASSA does not effect existing optional programs or waivers and includes a maintenance of effort clause to ensure these programs are not diminished. Waivers include a more enriched package of services for those individuals who need more services. With MiCASSA, people who are eligible for nursing homes and ICF-MR facilities can choose community attendant services and supports as a unique service that is a cost-effective option. The money follows the individuals not the facility.

6. Is MiCASSA a new unfunded mandate?

No. MiCASSA is a way to make an existing mandate for nursing homes and virtual mandate for institutions for mentally retarded persons responsive to the needs and desires of the consumers of these services. MiCASSA says the people who are already eligible for these services will simply have a choice of where they receive services. MiCASSA would adjust the current system to focus on the recipients of service, instead of mandating funding for certain industries and facilities.

7. Why is MiCASSA needed?

Our current long term services system has a strong institutional bias. Seventy five percent of Medicaid long term care dollars go to institutional services, leaving 25% to cover all the community based services. Every state that takes Medicaid funds must provide nursing home services while community based services are completely optional for the states. MiCASSA says, let's level the playing field, give the person, instead of government or industry, the real choice.

8. Will MiCASSA bust the bank? What about the "woodwork" effect?

MiCASSA assures that a state need spend no more money in total for a fiscal year than would have been spent for people with disabilities who are eligible for institutional services and supports.

There is a lot of discussion about the people who are eligible for institutional services, would never go into the institution, but would jump at the chance to use MiCASSA. (This is called the woodwork effect.) The states of Oregon and Kansas have data to show that fear of the woodwork effect is blown way out of proportion. There may be some increase in the number of people who use the services and supports at first, but savings will be made on the less costly community based services and supports, as well as the decrease in the number of people going into institutions.

Belief in the woodwork effect assumes a lot of "free care" is now being delivered by caregivers. There is a real question whether this care is truly "free". Research on the loss to the economy of the "free" caregivers is beginning.

9. What are the transitional services?

Currently Medicaid does not cover some essential costs for people coming out of nursing homes and ICF-MR facilities. These include deposits for rent and utilities, bedding, kitchen supplies and other things necessary to make the transition into the community. Covering these costs would be one of the services and supports covered by MiCASSA.

10. How is Quality Assurance addressed in MiCASSA?

States are required to develop quality assurance programs that set down guidelines for operating Community Attendant Services and Supports, and provide grievance and appeals procedures for consumers, as well as procedures for reporting abuse and neglect. These programs must maximize consumer independence and direction of services, measure consumer satisfaction through surveys and consumer monitoring. States must make public results of the quality assurance program public as well as an on-going process of review. Last but not least sanctions must be developed and the Secretary of Health and Human Services must conduct quality reviews.

11. What is the purpose of the Real Choice Systems Change Initiatives section of the bill?

MiCASSA brings together on a consumer task force, the major stakeholders in the fight for community-based attendant services and supports. Representatives from DD Councils, IL Councils and Councils on Aging along with consumers and service providers would develop a plan to transition the current institutionally biased system into one that focuses on community-based attendant services. Closing institutions, or at least closing bed spaces must be thought through by the people that have an investment in the final outcome, the consumers. The plan envisions ending the fragmentation that currently exists in our long term service system.

In addition, the bill sets up a framework and funding to help the states transition from their current institutionally dominated service model to more community-based services and supports. States will be able to apply for systems change grants for things like: assessing needs and gathering data, identifying ways to modify the institutional bias and over medicalization of services and supports, coordinating between agencies, training and technical assistance, increasing public awareness of options, downsizing of large institutions, paying for transitional costs, covering consumer task force costs, demonstrating new approaches, and other activities which address related long term care issues.

It's all about People.


PABIA Meeting Notice
MEETING DATE:  Tuesday, October 7, 2003
 
TIME:  7:00 P.M.
 
TOPIC: Speaker to be Announced
 
PLACE: 1323 Forbes Avenue, Pittsburgh Near Mercy Hospital and AJ Palumbo Center
 
ADMISSION: Free
 
PARKING: Free Parking Lot adjacent to the building
 
Contact:  Ed Crinnion at 412.761.9870
 
Refreshments provided.
 

12 Ways to Keep Negotiations Rolling

Negotiations can sometimes get deadlocked. Both parties can reach what seems to be the end of the road, where there appears to be no manageable route for greater compromise. Or the impasse could stimulate another round of deliberations, which may eventually result in a rewarding conclusion. To make sure that it's the latter situation, you can follow these dozen ways to bring discussions to the next stage:

1) Take a breather. This is as simple as it sounds. Take a break when you are feeling beleaguered. You can announce it's a good time to adjourn briefly or even better, you can incorporate break times into your negotiations. By planning to rest at least every hour, you will be better able to stay on top of your objectives.

2) Sort out the facts from the fiction. Distinguish the hard facts from the fictitious statements being made by verifying data first before accepting it as true. Keep in mind that ascertaining the facts is key to your outcome. When you make the effort to confirm facts, you can evaluate them and figure out their relevance to your position. Be ready to present sound arguments against inaccurate statements.

3) Identify the gray areas. It's also important to recognize the areas that cannot be categorized as fact or fiction. Examples of gray areas are opinions or topics requiring you to retrieve more information. To address these gray areas, you may need to take time off and arrange to meet again at a later date after obtaining more data. Tackling these fuzzy areas also involves acknowledging that you may not have a well-defined position or opinion on certain subjects. If you come to an impasse, it may be because you don't have a stance on at least a few items-facts or opinions.

4) Keep anger by the wayside. Threats are unacceptable and disrespectful. When anger prevents talks from advancing, it's time to put this emotion aside. Sometimes, another impartial person is needed to recognize that anger is derailing progress. If feasible, think of an activity that will let you vent your emotions. Most importantly, realize that your strong feelings reflect the issue's importance. Put the issue and the anger aside briefly if you have other issues to tackle.

5) Concur in principle. Instead of allowing emotions and words to become obstacles, search for a way to agree in principle with the issue causing the deadlock. If you can come to an agreement in principle then you are both in accordance with the objectives, greatly improving chances for a mutually satisfactory conclusion. Remember that what needs to be adjusted is your approach, not your intent.

6) Reassemble and reassess. To renew your enthusiasm, reassemble your team and talk about what you've achieved so far. Emphasize the positives and perhaps reconsider how your objectives should be prioritized. Review where you are and what ground you've covered to determine progress. You can then redirect your attention and efforts to the real objective. Issues defying resolution may not be important after all. When you resume talks, renew your concentration on your purpose.

7) Find new, insightful information. There may be something you overlooked or chose not to consider in the planning stage and during the discussions. Look for new data that will bring new insight to your objectives. By thinking creatively, both parties can circumvent the impasse to reach an agreement.

8) Get help. The most effective solution may involve another outside party who can maintain objectivity, hearing out both sides and elucidating points. Seek assistance when talks are seriously deadlocked and both of you desire satisfying results.

9) Know when to back down. Being a good negotiator entails identifying a second choice desired outcome or a fall back position. Do not enter a negotiation with only one agreeable result in mind. Remember that negotiation is democracy, not autocracy, and that compromise is key. If you've put forth your best effort and secured at least your fall back outcome, then you should enjoy a sense of contentment.

10) Try out a different venue. Sometimes changing the site of the negotiation can keep the ball rolling. The noise level or even the ambiance of the place could be contributing to your lack of progress. To get talks on track, think about holding the discussions at the other party's location to express good faith or at a mutually satisfactory place where no side can claim home territory advantage.

11) Differentiate goals from position. Negotiators can sometimes hold fast to a position while forgetting what the main goal is. Look beyond the positions into the underlying interests and you will discover the way to put an end to the conflict. It is challenging to unearth goals, but it is also revealing and important to undertake. By asking why, you can uncover the actual reasons-which may sometimes even be irrational.

12) Brainstorm. Try some open-ended brainstorming, also called optioning, to get creative juices flowing. Start generating options that may strike you as otherwise unlikely or impossible. Welcome ideas that may even seem ridiculous. Brainstorming will let both sides be creative as well as gain ground toward an agreeable result.
When you are able to overcome a deadlock and work out an acceptable solution for both parties, the outcome is mutually beneficial, satisfying shared interests. Utilizing any one or a few of these dozen steps will help you get to that desired conclusion.

Source: A Dozen Simple Ways to Break Negotiation Deadlocks, Marsha Lindquist, Salesvault, March 10, 2003
 

FREE OUR PEOPLE “Songs of Freedom.” 

The “Stolen Lives: Songs of Freedom” CD is a collection of disability rights songs written and sung by artists who have experienced what it means to be a person with disability in this world. The 12 songs on the CD illustrate the ongoing struggle for civil, human and disability rights.

Artists include: Johnny Crescendo, Elaine Kolb, Ian Stanton and Diane Coleman.

Songs include: “Free Our People”, “Tear Down the Walls” and “Talkin’ Disabled
Anarchist Blues” and more.
 

CD Order Form.


 
   Subscribe or Unsubscribe From The Pittsburgh Area Brain Injury Alliance Electronic News List
 
  * TO JOIN THE LIST *
 
Send a blank email to:  PABIA-NEWS-SUBSCRIBE-REQUEST@LISTSERV.TBINET.ORG (your Subject: line may say JOIN)
 
  * TO BE REMOVED  *
 
Please remember you may remove yourself from this list (unsubscribe) at any time by sending a blank email to PABIA-NEWS-SIGNOFF-REQUEST@LISTSERV.TBINET.ORG (your  Subject: line may say REMOVE)
 
You can also visit our http://www.pabia.org website and click the newsletter link that leads to the List Server page designed for  subscribe or unsubscribe requests.
 
If you know of anyone who would enjoy receiving this publication, please forward this message to them.
 


Back Home Next