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Inside This Issue:

• Why Develop Peer Support Groups? -brain trust

• Newest Peer Focus Group Meeting Brief -February 24, 2004

• PABIA Meeting Brief -March 2, 2004

• Features of Concussion Frequently Observed (CDC article)

• Where Are the Parents? -By Sue Stuyvesant

• Upcoming Forums -Your Voice Counts!

• IDEA Struggle -Parent's Fight Back

• Talk Back! -Subscriber Comments

• Email Support Groups -Free Online Peer Support

• Cognitive Dissonance VII -by John Pistorius

• Stem Cells Found In Adults May Repair Nerves

• MiCASSA & Money Follows the Person

• There's No Place Like Home! -MiCASSA Talking Points

• Pittsburgh Area Meeting Notices

• Thank You! -The People Who Make It all Possible

• PABIA-NEWS Subscriber Policy

• Subscribe/Unsubscribe Instructions

• View previous editions online here.

Why Develop Peer Support Groups?

Support Group Development Committee (BRAIN TRUST)

BRAIN TRUST: Building Regional Associations Identifying Needs To Resolve Underlying Support Trials.

This support group development committee began in 2000 as people realized the need for additional peer focus groups. At that time, we called our committee the Brain Injury Support Group Alliance (BISGA).

We chose that name because it clearly defined what we proposed:

Support Group; a group of people with common experiences and concerns who provide emotional and moral support for one another.

and; Alliance; a union to promote common interests, a union of organizations.

We were a "Special Union Providing Positive, Orderly, Relevant Teamwork, Growing Regionally Organized, United People, Advocating Legitimate, Lasting Initiatives, Abolishing Negative Connotations Entirely."

Committee Roots

This committee has its roots in the very beginning of the Peer Support movement in Pittsburgh. The original Pittsburgh peer support organization was called the Pittsburgh/Regional Chapter of the National Head Injury Foundation (NHIF).

The founders actively focused their energy on two main projects at that time. One was to aid in the development of support groups to help families with the emotional adjustments and decisions they faced. 

The other was to maintain and expand a reference library containing information on head injuries and available services. This was kept at the main branch of the Carnegie Library in Pittsburgh. Our website has replaced this collection.

People benefit from peer support throughout their recovery by:

• Networking with others who have learned the ways of the various medical, governmental and societal systems;

• Social networking;

• Compensatory strategy sharing;

• Information gathering and sharing;

• Advocacy;

• and learning to access systems and services.

Sharing personal experiences helps people cope. People recovering become better equipped to overcome barriers to living productive, satisfying lives.

BRAIN TRUST helps by supplying the tools we have developed to help facilitate successful meetings. We give our time to people who want to start new support groups that focus on particular needs. We share our knowledge and understanding of issues to help people understand the work that needs to be done. And we offer encouragement that helps others continue in the effort to provide support.

We have two main priorities:

1. Our number one priority is to locate and assist effective meeting facilitators.

2. Our second priority is to find suitable, accessible meeting space with parking.

Our committee has successfully helped to create three new groups in the Greater Pittsburgh Region. Two of these groups started because of a geographical need and the third has started 'to address needs of professionals who sustain brain injury.'

More people have contacted us wanting to start new groups.

• A married couple want to begin meeting with other couples to discuss issues that are relevant and specific to couples who experience brain injury.

• An individual working in a trauma center wants to begin a group for loved ones, who have someone receiving care.

• A family whose son has been diagnosed with brain injury want to start a group for parents who are raising children experiencing the consequences of brain injury.

We also have young adults who want to meet with other people in their age range to discuss particular issues and needs that they face.

And we have many people who have expressed an ongoing desire for more social activities. Our peer support groups can meet the needs of people, but it takes time and energy from caring people to do the work. We need your help.

Consider getting involved, even in a limited way.

Offer to help set up a meeting, or assist in the preparation of a meeting notice or flyer. Make copies of a meeting notice poster and get them posted in doctor's offices, supermarkets, store front windows and any other place where people might see them. You could contact your local bakery, grocery store or other retailers for donations of food items for refreshments.

Many hands make light work. By pitching in, even just a little, you can make a positive difference in someone's life.

The rewards are immeasurable. Every smile, every life you touch, has meaning. The benefits of volunteering are not calculated in dollars, they are measured in personal satisfaction; in knowing that we help to make the world a better place to live. Pitching in is one of the foundations of peer support. It is what keeps peer support alive for you and others in the future.

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New Peer Focus Group Meeting Brief

Tuesday, February 24, 2004

The second meeting of the newest peer support group was a success with seven people in attendance. The main topic of discussion was work related issues. Driving privileges were discussed as a major concern.

Two attendees receive care from the same rehabilitation company. Someone working for the rehab company referred them to another company that sells driver testing services. This testing company charges $400 for the testing service.

One man is receiving services from the PA Office of Vocational Rehabilitation (OVR), but his counselor refuses to authorize payment for the testing service. These people stated that they had not been restricted by doctors from driving.

The PA Dept. of Motor Vehicles requires doctors to notify them of any person who is 15 years and older, who is seriously impaired and might pose a hazard on the roadways.

Another of the attendees suggested contacting the PA Dept. of Motor Vehicles for testing. Who better to test you than the licensing agency for the state? Testing is available at any of the Licensing centers across the Commonwealth of Pennsylvania. More information on this or any other motor vehicle related subject can be found at http://www.dmv.state.pa.us/.

The next meeting of this group will be held March 8, 2004 at 7 p.m. Anyone interested in attending can contact John Pistorius at 412.481.0443 or jp@pabia.org for more information.

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PABIA Meeting Brief

March 2, 2004

Thirty people attended tonight's meeting. We met in the lobby of the Life's Work building for a pleasant change. This mini-seminar enlightened attendees with information about disability-based financial and estate planning.

Kathy Hendrickson, Esq., President and Maria Smith, Vice President of The Family Trust-Achieva were our featured speakers. They explained The Family Trust and Disability-estate planning. The  Family Trust exist to enable persons with disabilities and their families to design and implement a plan to optimize their quality of life.

The Family Trust

• Provides life-planning services for persons with disabilities and their families, including asset management, personal planning tools, and supports that augment government funded services.

• Administers available funds that enhance quality of life in accordance with the wishes of persons with disabilities and their families.

• Develops a fund so that individuals with inadequate financial resources may have access to otherwise unavailable supplemental services and supports.

For more information, please contact Maria Smith toll free at 1-888-272-7229 or locally at 412.995.5000 x434.

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Features of Concussion Frequently Observed

From Management of Concussion in Sports (CDC Website)

1. Vacant stare (befuddled facial expression)
2. Delayed verbal and motor responses (slow to answer questions or follow instructions)
3. Confusion and inability to focus attention (easily distracted and unable to follow through with normal activities)
4. Disorientation (walking in the wrong direction; unaware of time, date and place)
5. Slurred or incoherent speech (making disjointed or incomprehensible statements)
6. Gross observable incoordination (stumbling, inability to walk tandem/straight line)
7. Emotions out of proportion to circumstances (distraught, crying for no apparent reason)
8. Memory deficits (exhibited by the athlete repeatedly asking the same question that has already been answered, or inability to memorize and recall 3 of 3 words or 3 of 3 objects in 5 minutes)
9. Any period of loss of consciousness (paralytic coma, unresponsiveness to arousal)

To read the complete article, visit http://www.cdc.gov/doc.do?id=0900f3ec800091d5

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Where Are the Parents?

By Sue Stuyvesant

The following essay was penned in 1996 by a mother of a child with disabilities after learning a question was asked by a school official as to why there weren't more parents (of special needs kids) involved in the local PTA. She answers his question:

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.

They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.

They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?

They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.

They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.

They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.

They are struggling to keep a marriage together, because adversity does not always bring you closer.

They are working 2 and sometime 3 jobs in order to keep up with the extra expenses.

And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.

They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant
--------------------------------------------------------------------------------
Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

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Upcoming Independent Living Council Forums

Your voice is important!

The Pennsylvania Statewide Independent Living Council (PA SILC) is conducting its annual hearings on the state plan for independent living (SPIL). These  hearings help determine how independent living funds should be used to improve the lives of Pennsylvanians with disabilities.

Mark the following dates, times, and forum locations on your calendar:

March 23, 2004 2:00 PM – 7:00 PM
PANTALL HALL & CONFERENCE CENTER
135 East Mahoning Street
Punxsutawney, PA 15767
1-800-872-6825

March 30, 2004 2:00 PM – 7:00 PM
RADISSON LACKAWANNA STATION HOTEL
700 Lackawanna Avenue
Scranton, PA 18503
570-342-8300

March 25, 2004 2:00 PM – 7:00 PM
UNIVERSITY OF PITTSBURGH AT GREENSBURG
SMITH HALL LOUNGE
1150 Mt. Pleasant Road
Greensburg, PA 15601
724-837-7040

April 1, 2004 2:00 PM – 7:00 PM
BELL SOCIALIZATION SERVICES
160 S. George Street
York, PA 17403
717-848-5767

March 26, 2004 2:00 PM – 7:00 PM
WINGATE INN
Route 30 Box 106
Latrobe, PA 15650
724-539-0400

Light refreshments will be served.
 

Several options are available if you cannot attend a forum:

• You may call your comments into the SILC office Monday -Friday from 2:00 - 4:00 PM AT 1-800-796-9163,

• Fax your comments to them at 717-236-8800,

• email them to BJMPASILC@HOTMAIL.COM,

• or mail them to the postal address below prior to April 2, 2004.

• PA STATEWIDE INDEPENDENT LIVING COUNCIL
  2 N. SECOND STREET, SUITE 100
  HARRISBURG, PA 17101

Please consider the following questions regarding funding and independent living.

1. Should funding money follow the individual or continue to be locked down by the company or individual that provides the service?

2. What would make you or your family member more independent?

3. Do you understand that money following the individual can eliminate over burdening rules and regulations by government regulators?

4. Should our funding policy be neutral and let the users choose where services should be delivered? (The current system is not neutral.)

5. Do you believe we must explore more cost effective ways of providing services to people with disabilities? (Community services on average are less expensive then institutional services and better liked by individuals.)

6. Can people with disabilities both old and young, even those with severe mental and/or physical disabilities benefit from services in the most integrated setting possible? (This would give people REAL choice.)

7. Do you want equitable funding opportunities for services?

8. Do you want to eliminate programmatic or rule disincentives to community services?

9. Do you want options for services delivery to include agency, vouchers and fiscal intermediaries? (This would shift the control to people with disabilities and families.)

10. How could service providers in your area give you more control over your services and your life?

11. Do you want to have services that promote family values by keeping families together?

12. Do you want a functional system based on need instead of medical diagnosis? (This could end fragmentation of the service delivery system.)

13. Do you agree that keeping people in the community allows the possibility for individuals with disabilities to train for work so they can become taxpayers instead of tax users?

14. Do you know of any unmet transportation needs in your area?

15. Why do people end up in nursing homes?

Our people must stand up and be heard on this issue.

It is important to all of the people who are living with the consequences of brain injury. This is your chance to help make positive change happen. It is too easy to put this down and forget about it.

Do it now! Write down your answers to the above questions and anything else that you believe would help you or your family member to live independently.

Any questions? Contact John Pistorius at 412.481.0443 or email jp@pabia.org.

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IDEA Struggle

Condensed from Our Children Left Behind

Let's look at the current Individuals with Disabilities Education Act (IDEA 97) battle. Parents want to give this legislation a chance to work. School and special education administrators and their lobbyists want to revise it to better suit themselves.

Until 1975 students with disabilities were not assured the same right to a free, appropriate public education promised to children who did not have disabilities. The practice throughout the country was to depreciate the value of people with disabilities, and to segregate them from the general community. They were denied the very educational, housing, employment and community opportunities Americans in the general population took for granted for themselves.

IDEA 97 was signed into law in 1997. The federal rules implementing IDEA 97 [nuts and bolts rules that tell administrators and families how to use IDEA at the federal, state and local level] took effect in 1999.

Most states conformed to IDEA 97 requirements by 2001 and others by 2002. At most, IDEA has been fully implemented throughout the United States for two years or less. This new law has not even had time to be in effect long enough to work.

There is little current, reliable research data that fairly or accurately assesses IDEA 97’s effectiveness across the country at this early point in its existence. It is too soon to declare with certainty that any provisions put into place by IDEA 97 are not working.

Part B of IDEA 97, is the section governing parent/student rights and student eligibility. It covers Individual Education Plan [IEP] development; IEP Team activities and requirements; discipline provisions; and appeal mechanisms. It was permanently authorized by Congress in IDEA 97, and does not have to go through Congress ever again to remain the law of the land. There is no legal need or reason to review or revise Part B in order for it to remain in effect.

Procedural Protection

Even today parents and their children with disabilities are at a distinct disadvantage when engaging in their children’s educational planning. Schools and special education administrators have professionals and attorneys who know special education law paid for by taxpayers including the parents.

Parents frequently lack the economic resources to hire lawyers to advise them on their children’s educational rights. There generally are only a handful of lawyers in each state who regularly practice special education law on a par with the lawyers retained by the schools. Even trained professional advocates who do not practice law are relatively scarce. The quality of advocacy services and information varies greatly from state to state, and sometimes from county to county.

Parents lack the depth of resource and program knowledge possessed by school personnel and are at a distinct disadvantage in the IEP Team planning room. If the availability of services or independent evaluations is not thoroughly explained to the parents by the professionals, the parents frequently feel they have no choice but to accept the services or setting offered by the school.

Parents, who lack the economic and educational resources available to schools and educators, often are easily intimidated by school personnel and the planning process, and accept school programming suggestions even with reservations because they fear that if they put up a fight, the school will take it out on their children.

The procedural protections contained in IDEA 97 assure that the balance of power is more equally weighted. The steps involved in resolving a dispute frequently lead to an early and effective resolution. Very few cases go all the way to a due process hearing.

IDEA 97 ensures that parents are informed of their rights and give them reasonable opportunities to exercise them.

These points summarize some of the key themes in the current reauthorization battle. They are not exhaustive, nor does every family or student confront every problem. They give a common sense flavor for what is at stake in the battle to save IDEA.

For more complete information please visit:

http://www.ourchildrenleftbehind.com

You can also send a blank email message to idea@pabia.org to receive the National Information Center for Children and Youth with Disabilities paper-QUESTIONS AND ANSWERS ABOUT THE I.D.E.A.

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Talk Back!

Subscriber Comments

I love your Web site at www.pabia.org! It is nice meeting new friends and forming new coalitions. Nice work.-Shari

I just went in and took a further look at your site, and subscribed (to the newsletter) also. This is QUITE a good site!  I have of course book marked it, and will try to get the link on my own website later this spring.  Kudos!  :) -Tommy http://www.totemwood.us/

You've done damn good with the site and all that it entails.-Martha

The one page schedule for the year saves time and confusion. A good idea done well.
-Cheers, Charrelz

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Email Support Groups

Peer Support for People Who Experience Brain Injury and Related Disabilities.

What is an E-Mail Support Group?
It is a group of people who communicate just as any other support group, but they interact with each other via Internet e-mail. This is accomplished by something called a "mailing list". It is usually operated by one individual. They are called the List Owner. A list owner sometimes uses special software that runs at a particular location on the Internet.

A mailing list is usually dedicated to just one subject. Some are "Private" meaning one must meet certain criteria before they are allowed to subscribe by the List Owner.

So how does this work?
Once subscribed, you receive instructions from the List Owner which should explain everything to you. For most, the basics are: ...there is one address that you send all your messages to, this is called the "List" address. Once your message reaches this address, the List software makes copies and sends it to everyone that is subscribed to the List. Once you or anyone receives a message from the list, you can reply to it and it in turn goes to everyone on the List.

Other lists are less regulated.

One of our local list facilitators is Denise Patterson. Her list is simple; write to Denise at deenomad@aol.com and ask to be added to her list. She will introduce you to the others by sending them a brief note that contains your email address. She will also send you the list of email addresses of subscribers. You can write as often as you like or feel the need.

Popular Trend

Mailing lists have become very popular and there are more than 180,000 in use today. They are the best and quickest way to gather information and to communicate with others that are in the same situation you are or have the same interests. We highly recommend anyone needing information or support, to join email support groups.

TBI Survivors Support Group, Survivors Only
This is a support group via E-mail for persons who survived Brain Injury only. It's purpose is so people have a central location to meet and discuss their problems and exchange information.

Joining Instructions
Address a message to: tbi-surv-request@listserv.tbinet.org

Use JOIN as the Subject, this will alert the List Owners that you want to join. Then explain a little about yourself and your situation. Tell why you would like to join the group. Be sure to include your first and last name. Since this message will be forwarded to the group once you are subscribed as an introduction letter, don't say anything you don't want the others to know.

Note: If you have any problems with the subscribing process or you do not get a response within 24 hours, contact the List Owner below.

List Owner, Joe at: richiesdadjoe@earthlink.net

Archives of the TBI-SURV list are available to members at: http://listserv.tbinet.org/archives/tbi-surv.html. A password is needed and instructions are at that URL for obtaining one.

Source: http://www.tbinet.org/support1.htm

Other email support groups:

BRAINSTORMERS

deenomad@aol.com

Survivors of Traumatic Brain Injury email list:
http://groups.yahoo.com/group/SoTBI/

For a complete list of email support groups at LISTSERV.TBINET.ORG visit the following page: http://listserv.tbinet.org/archives/index.html.

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Cognitive Dissonance VII

Stereotypes, Perceptions and Facing Reality.

John Pistorius

Like George Bailey in the movie “It’s a Wonderful Life”, people who experience brain injury and related disabilities must overcome cognitive dissonance. The individuals who are suddenly thrust into a category of disability can find themselves in an ongoing pained state of mind.
 

Here is a simple equation: Brain Injury causes cognitive impairment. Cognitive impairment causes stress and cognitive dissonance. Stress compounds the dissonance by further limiting cognitive function. Real life difficulties result from reduced cognition. Thinking ability is further reduced. These difficulties compound stress. This further reduces cognitive function and increases cognitive dissonance. This spiraling cycle can plunge a person deep into despair if left unresolved.

This is the central reason for my exposition; to help people overcome dissonance and the debilitation it causes.
 

Cognitive Dissonance is further increased and worsened by:

• Others’ undignified, prejudiced, discriminatory treatment of the individual who survived brain injury.

• Discriminating, debilitating language.

• Cultural barriers.

• Unenlightened focus on inability.

• One’s own preconceived opinions, attitudes and beliefs about brain injury and related disabilities.

• Loss of a sense of self.

• Circumstances beyond one’s control.

• Smashed dreams and aspirations.

• Lack of positive recovery options.

• Lost hope.

• Fluctuations in cognitive abilities.

• Language barriers.

Battalion of Monster Attitudes and Beliefs
The following list is one of the enemies we are up against in our cognitive dissonance battle. It describes some of the many negative attitudes and beliefs we encounter regarding people who experience brain injury and resulting disabilities. The people who hold these attitudes and beliefs may be unaware of their influence. Or they might not care. Insensitivity can be a difficult attitudinal barrier to overcome. We must first recognize and deal with these negative attitudes and beliefs to defeat them. Overcoming their influences can significantly reduce cognitive dissonance.

Eternal child; This might be the most common misconception of people who experience brain injury and related disabilities. This belief causes others to treat them like children. They expect them to behave like children, without regard to their biological age. Many well-meaning parents are especially guilty of this type of abuse.

Adults with disabilities are too often shielded from authentic, real life encounters to ‘protect’ them. For example; Parents, other caregivers and program administrators forbid or restrict real life activities. In many cases, real life is replaced with ‘programs’ and programmed activities. Activities like dating are eliminated altogether.

The myth that all people recovering from brain injury are unable to care for themselves perpetuates dependence and disempowers the individual. This can cause tremendous dissonance. Sometimes it is difficult for well-meaning caregivers to release their tight grip of control.

Many programs are designed to keep people dependent upon the program and other programs. This insures an ongoing paycheck for the administrators. It also keeps the company employees paid. Simply put, it is good for the business and bad for the people. Restricting people or locking them up and calling it independent living is disempowering and immoral.

I’ve witnessed and experienced countless examples of this type of disempowering attitude. It always causes dissonance in my mind.

Faking, lazy; Too often, when an individual has any of the many brain injury related disabilities and symptoms, others discount the reality. They believe the person to be lazy or faking. This is especially true regarding people who appear to be uninjured. Those who ‘pass’ as non-disabled in appearance often suffer greatly from this monstrous attitude.

The faking/lazy attitude is reinforced in popular 30-60 minute television programs. Millions of people see ‘evidence’ of this lie every time a person is knocked unconscious and shown as ‘waking up’ and becoming fully functional before the TV show is over. These viewers receive an automatic, unfiltered message that perpetuates this belief. Hollywood also pushes this myth upon our culture in the movies it produces.

Some people who survive brain injury never regain consciousness. Others do. Of the ones that do, some require additional sleep and frequent rest periods. This is a result of neurological damage, not laziness.

Some people experience fluctuations in ability post injury. Memory, attention span, speech and other language skills can change from moment to moment and day to day. This is often used as grounds for the accusation of faking. In reality, cognitive functioning is a complex range of processes. These are affected by many things. The amount of sleep, nutrition, stress and other factors contribute greatly to anyone’s ability to think and respond to the world. Cognitive dissonance can be paralyzing to people experiencing cognitive impairments.

Helpless, incapable, powerless; People who experience Brain Injury are often kept from demonstrating their skills. This is because they are believed to be unable to do things without help. This attitude is especially difficult to overcome because the perpetrators are usually well-intentioned.

A good example of this attitude is portrayed in the children’s movie, “The Secret Garden.” A young girl (Mary) finds her cousin who is locked away in a bedroom and tended to by several people who refuse to permit him to do anything. His ‘condition’ led others down this dark path of oppression that left him writhing on a bed in diapers at the age of ten years old.

With the help of some others, Mary gets him out into the real world where she helps him to learn to walk. He experiences a great deal of dissonance at first because he has never been permitted out of his room. She teaches him that he has the power to be free from the oppression.

This monster attitude causes a great deal of dissonance every time someone insists on helping someone who is experiencing disability. It is fine to offer help, it is disempowering to insist. Everyone has the right to refuse help, even if a task is particularly difficult. Unless the individual is at risk of serious injury or death, it is polite, proper and empowering to accept their refusal. To do otherwise is disempowering, humiliating and can cause cognitive dissonance.

This attitude also inflicts pain upon another when someone refuses to let others do things for themselves. I'm not talking about the offering of assistance here. I mean doing things for others and refusing to let them do anything at all. It is cruel to stop people from enjoying life. Even if they might stumble and fall, we let babies learn to walk.

Lucky, hero or special; Some people consider a person recovering from brain injury that lives independently and/or is employed as lucky, brave or special for overcoming the perceived limits of brain injury.

This attitude restricts other people from becoming fully independent. It teams up with the ‘Helpless, incapable, powerless’ belief, the ‘Inferior’ attitude, the ‘Eternal Child’ belief, the ‘Object of Pity’ attitude and the ‘Sick’ belief. It hampers individuals from reaching their full recovery potential. It makes success seem impossible to reach under most circumstances. If only the ‘lucky ones’ can reach full independence, it gives everyone an excuse for not attempting to improve services, systems and care giving.

People living and working in the community after brain injury are not heroes. They have worked very hard to maintain self-sufficiency. They fought to overcome dissonance produced by every type of cause imaginable. They had to fight their own attitudes about injuries and functional limits. And they needed to fight cultural attitudes.

It takes work and the right attitude on the part of the individual, caregivers and the rest of society to beat this monster. It takes deliberate, affirmative action.
 

Inferior; Some believe that people who experience brain injury are "second-class citizens." This causes civil rights violations. People who are considered ‘inferior’ are often denied the same rights and privileges as a person without a disability. Society is biased in favor of people who have not yet experienced disability. This myth is fed by cultural attitudes about physical and mental strength and weakness. It is also fertilized with the dung of contemporary television programming.

Many of our societal systems are difficult to access by people with disabilities. They are not considered important enough to justify the expense. The current legal controversy in Tennessee illustrates this point clearly. People are forced to be carried to upper floors in Tennessee courtrooms. The state government refuses to provide reasonable accommodations that do not humiliate people with disabilities.

The civil rights struggle faced by people who are labeled “vegetative” is another reflection of this belief. Reducing people from human status to vegetable status perpetrates this inferiority fraud upon society. Vegetables are not protected by the Bill of Rights. The lives of very real people are hanging in the balance between death and life; institutional life and independent living with appropriate supports.

Subhuman; This view is pervasive in relationship to people who live with severe consequences of brain injury. The medical community has coined the phrase ‘vegetative’ to refer to individuals who are in coma and non-responsive.

The term ‘vegetative’ was first used to describe the condition of a person who was functioning without consciousness. Due to the similarity to the word ‘vegetable’, people often replace the term ‘vegetative’ with ‘vegetable’.

If a person becomes less than whatever it is that we believe they should be, we cannot scrap, junk or kill them. However, if they can be labeled and considered to be a vegetable, then that makes it easier for society to run them through the in-sink disposal when they become non-responsive or persistently comatose.

The term ‘animal’ is sometimes used to describe a person who displays negative behaviors after brain injury happens to them. Again, any language used wrongly to refer to human beings is demeaning and creates barriers in the minds of others. This description reinforces the next belief:

Menace or threats to society; Historically, persons with disabilities were negatively viewed as contributing to the deterioration of civilization.

This belief led to segregation, persecution, dehumanization, and imprisonment of many thousands of people. People who survived Brain Injury were often considered to be mentally retarded or as having mental illness. It was common practice to institutionalize people. These large institutional settings were called ‘asylums’ and ‘sanitariums’. Many people with disabilities were kept from reproducing by the practice of segregation or sterilization.

Segregation continues today under the guise of housing ‘programs’, nursing homes, and certain so-called ‘independent living’ arrangements. Instead of teaching people how to live among the general population; many program administrators pay lip service to empowerment and independence. They do this while fattening their budgets and bottom line on disempowerment and oppression.

Object of pity or charity; By feeling sorry for a person who survives brain injury, others adopt a patronizing attitude. This attitude is driven by a non-disabled person’s sense of superiority, but it is rooted in their feelings of inadequacy. 

Historically, pity and a sentiment of charity caused others to provide services to people with disabilities. It was common for people with disabilities to have to beg with cap in hand for survival. The belief that anyone with a disability is unable to work or live independently persists today. This belief compliments others in this list by undermining a person’s abilities.
 

Object of ridicule; This can be seen by the appearance of a person with a disability in circus side shows, "freak shows" and villainous movie roles. Historically, in literature and movies, people with disabilities were depicted as clowns, fools, and court jesters.

To this day, the entertainment media mostly portrays people with disabilities in an unrealistic light, further perpetuating negative attitudes regarding people who experience disabilities.

I personally experienced this attitude after appearing on a national television talk show about amnesia. It took years for people to stop ridiculing me about brain injury and my appearance on the program. What I believed would be a positive means to help others turned into a negative experience that caused massive amounts of dissonance.

Sick; Another misconception still common today is the view of a person who survives Brain Injury as sick, often mentally ill. This has led to an emphasis on treatment in medical service provision settings.

We cannot expect all brain injury related disabilities to be completely overcome or cured; however, some disabilities such as epilepsy can be treated or controlled by drugs and Vagus Nerve Stimulation treatment. Many people who experience Brain Injury can learn to compensate for deficits and lead satisfying, productive lives.

Recognize the Enemy
Spotting dissonance producing attitudes and beliefs is the first step in combating these monsters. Once we recognize this enemy battalion, we can actively fight to stop it from advancing in our lives, the lives of our children and the rest of society.

Fighting the language that feeds these monsters and gives them ammunition is an ongoing battle. It is one that we’ll explore Next Time:

Cognitive Dissonance VIII –
Sticks and Stones Will Break My Bones
And names can surely hurt me!

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Stem Cells Found In Adults May Repair Nerves

February 21, 2004

It used to be considered dogma that a nerve, once injured, could never be repaired. Now, researchers have learned that some nerves, even nerves in parts of the brain, can regenerate or be replaced.

By studying the chemical signals that encourage or impede the repair of nerves, researchers at the University of Washington, the Salk Institute, and other institutions may contribute to eventual treatments for injured spines and diseased retinas, according to a presentation at the annual meeting of the American Association for the Advancement of Science (AAAS).

Much of this research focuses on stem cells, one of several types of general cells that can give rise to specialized cells, like neurons. It was once thought that human stem cells were only found in. . .(read the rest of this article at TBI Resource Guide under the What's New' category http://www.neuroskills.com/ )

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MiCASSA & Money Follows the Person

Let's Get Them Talking About It!

"It is time to contact our Senators to insist that they talk about MiCASSA!", says Bob Kafka of the ADAPT Community.

ADAPT's next action will kick off on Sunday March 21st at the Holiday Inn Capitol (550 C St., SW) in Washington, DC.  As always, all are welcome to join.

In preparation for the upcoming action, ADAPT has produced some useful information regarding the need for MiCASSA.

According to Kafka, 2.2 million people with disabilities, old and young are warehoused in nursing homes and other institutions. MiCASSA legislation promises Money Follows the Person strategies that will empower our people to free themselves from this bondage. Families and people with disabilities are in crisis but this continues to be ignored.

"Our long term care policies have been virtually the same since 1965. Nursing homes still take the lions share of the funding, leaving only scraps left for home and community services." writes Kafka. "It is time someone stands up and says the 'emperor has no clothes'. It is time someone stands up and says, Our long term care system is broken, I commit to making it a priority in my Administration and will focus on community services as a first priority."

For information about ADAPT: 

write: adapt@adapt.org

call: 512/431-4085
visit: http://www.adapt.org

 

Contact your senators and tell them to talk about it!

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There's No Place Like Home!

MiCASSA Talking Points

1. Our long term service system must change. Created over thirty-five years ago funded by Medicare and Medicaid dollars. These are medical dollars which were not
originally conceived to meet people's long term care needs. We must think out of the box to a new system that empowers people and allows REAL choices.

* The money should follow the individual not the facility or provider.

* A national long term service policy should not favor any one setting over the other. It should be neutral and let the users choose where services should be delivered. The
current system is not neutral.

* Approximately 70% of our Medicaid dollars spent on long term care is spent on institutional services leaving only 30% for all community services.

* Current system is expensive and ways to meet the needs of people in the most cost-effective way must be explored.

* Community services on average are less expensive then institutional services and better liked by individuals.

2. Demographics of our country are changing.

a) aging process
b) children being born with disabilities
c) young adults - Medical technology keeping people alive who would have died previously.

3. People with disabilities both old and young, even those with severe mental and/or physical disabilities want services in the most integrated setting possible. Families
must have REAL choice.

4. People with disabilities and their families want REAL choice which means:

a) equitable funding opportunities
b) no programmatic or rule disincentives to community services
c) options for services delivery to include agency, vouchers and fiscal intermediaries. Empower people with disabilities and families.

5. Family values - Keep families together.
* Communities taking care of their own.
* Children belong in families.
* Mom and Dad together with their grandkids.

6. Money following the individual can eliminate over burdening rules and regulations by government regulators.

7. A functional system based on need instead of medical diagnosis could end FRAGMENTATION of service delivery system.

8. Keeping people in the community allows the possibility for individuals with disabilities to train for work so they can become TAXPAYERS instead of TAX USERS.

9. Overwhelmingly people prefer community services to stay in their own home. Federal gov't needs to work in partnership with the states to create flexible delivery
systems that gives people with disabilities REAL choice.

10. Change causes fear of the unknown. There are some long time providers of services and families who believe REAL choice would threaten what they have. We cannot continue the system as it is today. It is expensive, fragmented, over medicalized and not liked by almost everyone.

There's No Place Like Home!

Source: JUSTICE FOR ALL -- A Service of the American Association of People with Disabilities www.aapd-dc.org/JFA/JFAabout.html

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Pittsburgh Area Brain Injury Alliance

Upcoming Meeting and Social Event Notices

Next Pittsburgh Area meeting date: Tuesday, April 6, 2004

TIME: 7:00 P.M.
TOPIC:
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 or John Pistorius at 412.481.5482.
Refreshments provided.

The next Indiana Twp. meeting date: Tuesday, March 9, 2004

Time: 7:00 P.M.
Place: the McLaughlin Education Center of HealthSouth, Harmarville.
Admission: Free
TOPIC: Life Care Planning for special needs children and the families with Mark L. Sanders of Advocates For Dignity.
Parking: Free Parking in the HealthSouth Parking Garage
Contact: Tom Byrnes at 412-531-0343 or Ann Ciotoli at 412-828-1300
Refreshments provided.

The next Monroeville Area meeting date: Thursday, March 11, 2004

TIME: 7:00 P.M.
PLACE: Cross Roads Presbyterian Church, 2310 Haymaker Road, Monroeville, Pa.
TOPIC: COMMCARE WAIVER, with Ms. Amy Dana of Keystone Neurological Rehabilitation and Paul Damon, Parent and advocate.
ADMISSION: Free
PARKING: Free parking lot adjacent to the building.

Contact: Denise Patterson at deenomad@aol.com or Paul Damon at 412.372.2888
Refreshments provided.

New- Indiana County Brain Injury Support Group

When: Thursday, February 19, 2004
Time: 7 to 9 pm
Topic: "The Hidden Scars from a TBI (Traumatic BRAIN Injury). Physical, Mental and Social, and the New Challenges of life ever." with ED Crinnion - Pittsburgh Area Brain Injury Alliance - Coordinator and Brain Injury Association of Pennsylvania - Board of Directors 2000-2005
Place: Indian Haven Community Home, 1675 Saltsburg Ave., Indiana, PA 15701
Admission: Free
Parking: Free Parking Lot adjacent to the building.
Contact: Becky Myers 724.349.5934 or BILL Compton 724.639.9416
 

Western PA BIM / HS Recreational Bowling League

Where: Fun Fest Entertainment Center, 2525 Freeport Road, Pittsburgh, PA 15238
WHEN: Monday Feb 23rd, March 22nd and April 19th.
COST: $7 per person, for 3 games, shoes, 2 slices of pizza & unlimited fountain drinks.
TIME: 3:30 PM TO 6:30 PM on Lanes #35 to 40

Bowling at Fun Fest is Wheel Chair Accessible and there are Bowling Ramps.
For more information contact Tom Byrnes at 412-531-0343.

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Thank You!

These are the people that make it possible.

Ed Crinnion (412) 761-9870 for your continuing efforts in keeping the Pittsburgh Area Brain Injury Alliance together, funding the organization's website and supplying refreshments for PABIA meetings.

Kathy Hendrickson, Esq., and Maria Smith, for your comprehensive presentation about The Family Trust and reasons to establish trusts for people with disabilities.

Becky Myers (724) 349-5934 and Bill Compton (724) 639-9416 for your continuing commitment to peer support in Indiana County.

Denise Patterson and Paul Damon (412) 372-2888 for your ongoing coordination of the Monroeville area Peer Support Group.

Ann Ciotoli, MaryAnn Stritmatter 412-828-1300 and Tom Byrnes (412) 531-0343 for your  commitment to peer support in Indiana Twp.

Malin Lowenadler-Shadel and Lisa Taubman, for your help with the new group addressing the interests and needs of adults recovering from Brain Injury who are facing the challenge of professional role continuation, and those who seek reintegration into educational and career settings.

Jim Sproat and realty Counseling Co. Inc. (412) 381-1166  for your support of the PABIA-NEWS, electronic newsletter and for the use of your digital camera. We greatly appreciate your help. Anyone interested in contacting Jim to thank him personally, can call or visit his website at http://www.realtycounseling.com.

PABIA-NEWS Contributors- your insight, articles, poems and comments are vital to the success of this publication.

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"The only way some of us exercise our minds is by jumping to conclusions." -Cullen Hightower

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