ACQUIRED BRAIN INJURY NETWORK NEWS May 1, 2012—2012

ACQUIRED BRAIN INJURY NETWORK NEWS
May 1, 2012—2012/#05—64th Issue
215-699-2139 or 800-516-8052 Fax: 215-699-5139
2275 Glenview Drive, Lansdale PA 19446-6082
[email protected] www.abin-pa.org
Greetings……….
Happy news to report:
► The Council on Brain Injury has awarded
ABIN-PA a grant of $500 for operating costs.
►The RSVP VEC program in Blue Bell is
working with us to envision our future. We
are looking for several non-board members
for the Strategic Planning Team! Interested?
►We are working with A Woman’s Place to
incorporate brain injury into their domestic
violence training, policies and procedures
Our thanks to:
►Our donors—your help is so essential!
►Our April newsletter folders—Gordon & Kay
Rowe, Erik Toye, Helen Love, Chris Love, Joan
Nolan, Michel Florijn, and Bob Drucker.
►Peer Connect maven Maria Markakis for 14
people matched. 7 are waiting. Interested?
► Luncheon—scholarship, door prize, and
Silent Auction donors—Kudos to Pat Strenk!
5th ANNIVERSARY LUNCHEON
“SURVIVE & THRIVE”
1-4 pm SATURDAY May 19
Speakers, Awards, Prizes, Auction
FAMILY STYLE
Freshly Baked Bread, Calamari Frittè,
Sausage & Peppers, Maggiano’s Salad, SixCheese Cannelloni with Roasted Tomato
Sauce, Chicken & Spinach Manicotti,
Chianti Braised Beef, Chocolate Zuccotto
Cake, Profiteroles, Vanilla Bean Ice Cream,
Hot Fudge, Coffee, Hot tea, Iced Tea, Sodas
Maggiano’s Restaurant
205 Mall Boulevard,
King of Prussia PA 19406
610-992-3322
Hoping to see you on May 19th—meet and
greet—great food—beautiful setting!
Registration Required
____ $35 Regular
____ $20 Low income
____ Scholarship Request
____ Donation for Scholarships
Are you a survivor? Please send an article!
Mail check to: ABIN-PA, 2275 Glenview
Drive, Lansdale PA 19446
or use Event Registration on-line.
Together we are making a difference!
Barb Dively
2012 ABIN-PA SCHEDULE
All are welcome—please join us! (New Date)
1-3pm Saturday Newsletter Mailing-Lansdale:
Jun2, Jun30, Aug4, Sep8, Sep29, Oct27, Dec1
2-4pm Sunday Board Meetings-Lansdale:
Call-in using 218-862-1300, PC127105.
May TBD, Jun 10, Jul 8, Aug 12, Sep 16, Oct
14, Nov 4, Dec 16.
IN THIS ISSUE
PAGEi
1.
2.
3.
4.
5.
6.
7.
8.
Editor, Luncheon, Schedule, Index
Donors, Denise’s Corner, Global Picnic
PeerConnect, Luncheon, Resources
A Mother’s Story
Military TBI Testing Failure, Ad Rates
Community Integration Update
Caregivers (2), Veterans with Brain Injury
Your Message to ABIN-PA, Donations
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
ABIN-PA NETWORK NEWS—May 1, 2012—Page 2
THANK YOU TO OUR DONORS
DENISE’S CORNER
MARCH CONTRIBUTIONS
Bob Drucker (computer/printer), Sherri
Herschfeld, Steph Knarr, Gloria Rosen, Kay/
Gordon Rowe, Frances Scullion-Hazam,
Steve Silberstein.
In Honor of:
Phil Casper from Phyllis Casper,
Thomas Franz from Mary Lou Rosemeyer.
In Memory of:
John Pogozelski from Carl Palm,
Elizabeth Palm.
Don't you just hate when people don't talk to
you, they talk around you. It's worse when
you don't talk yourself. Because then they
automatically think you can't hear. When
someone can't talk, just ask, “Can he or she
hear?” instead of yelling or talking to
whoever they are with. Ignoring the person
who can't talk is insulting.
APRIL CONTRIBUTIONS
Eugenia Laux (sale of BonTon Booklets),
Maria Markakis, Merck, Kay/Gordon Rowe,
Lynette Savoy, Steve Silberstein,
Denise Westerfer
In Honor of:
Philip from his mother, Elizabeth Morrisey.
This is an addition to Pat Strenk's great article,
"Handicapped Accessible?" Pet Peeves.
Which, by the way, as a handicapped
individual, in a wheelchair, I think her article
really hit home. I had the task of finding out
how true they are. First, I think if companies
really want our business, they should try a
little harder. You know why you don't see
many wheelchair people out? Because we
don't want the embarrassing questions or
comments. I'm fairly young in age, well, I
haven't hit 50 yet. And I had the most stupid
thing or funny thing happen to me. This little
boy said Wow, she is old. I laughed. But what
if I was older, or what if I was younger, who
cares. You know who I think it's worse for, the
individual who is able to walk and talk but
has disabilities. I know I'm jumping around
and not making much sense, but that article
really stirred something up in me.
Denise Patterson
June 16 or 30—Schedule Your
Global Picnic for Brain Injury
Register your picnic at:
http://biglobalpicnic.org/
ORDER Royal Blue Wrist Bands for your
picnic from ABIN-PA—10 for $10
Protect Your Brain ©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
ABIN-PA NETWORK NEWS—May 1, 2012—Page 3
Need PeerConnect Matches
Call ABIN-PA and ask for Maria
Need Male and Female Survivors
Need Male and Female Family Members
Need Parents of Teenage Girls
~ 5TH ANNIVERSARY THANKS ~
SCHOLARSHIP DONORS
Frank Desimone & Dorene Pasekoff,
John & Barb Dively, Bob Drucker, Maria Markakis,
Peggy O’Neill
PRIZE / AUCTION DONORS
4Imprint (prizes), Beechwood, (natural products
basket), Timothea Cory (two Avon baskets,
teapot), Michel Florijn (votive set, mug), Marlene
Nathans (Pepperidge Farm basket), Joan Nolan
(soaps), Ride-A-Way ( basket), and through Pat
Strenk, donations from Franconia Heritage
Restaurant (gift certificate), Melissa Godfrey
(food basket), Grandview Hospice (plant), North
Penn YMCA (3—months membership), Richter’s
Mobile Shredding (Wawa coupons), and Towne
Restaurant (gift certificate).
ABIN-PA’s MISSION
ABIN-PA is dedicated to increasing public
awareness about acquired brain injury and
to providing support, education, information,
advocacy and other services for individuals
with acquired brain injury and their families.
RESOURCES
(PDO = “PA Department of”)
Brain Injury Help Line—PDO Health
1-866-412-4755
Brain Injury InfoLine—ABIN-PA
1-800-516-8052
Brain Injury Resource Line—BIAPA
1-866-635-7097
Brain STEPS—school children—BIAPA
1-724-944-6542
Client Assistance Program for
OVR & CIL’s 1-888-745-2357
Consumer Protection—PA Atty. General
1-800-441-2555
Crime Victims—www.pbpp.state.pa.us
1-800-563-6399 and 1-800-233-2339
Defense & Veterans Brain Injury
1-814-255-8601
Disability Rights Network
1-800-692-7443
Domestic Violence Hotline—Nat’l
1-800-799-7233
Head Injury Program—PDO Health
1-717-772-2762
Health Law Project—Public benefits
1-800-274-3258
Managed Care—Health Insurance
1-888-466-2787 PDO Health
1-877-881-6388 PDO Insurance
Parent to Parent - Mentoring
1-8880727-2706
Resources for Daily Living—Inglis
www.easiresources.org
Self-Determination Housing Project
1-877-550-7347
Special Ed Consult Line—PDO Educ.
1-800-879-2301
National Volunteer Programs
www.nationalservice.gov
Voting Issues—PDO State
1-877-868-3772
Waiver Enrollment—1-877-5504227
Waiver Help Line—PDO Public Welfare
1-800-757-5042
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
ABIN-PA NETWORK NEWS—May 1, 2012—Page 4
A MOTHER’S STORY
by Kay Rowe
My youngest son had left home several years ago and settled out West to follow his
dream.
One night, after a party, he hopped on a friend’s motorcycle, took off down a dirt road,
and crashed in a field where he lay until dawn, while being attacked by fire ants. He was
rescued in the morning by a Good Samaritan and rushed to the hospital where he was
diagnosed with severe brain damage.
When I arrived from the East Coast, I was informed by the ICU nurses that the patient
had shown few signs of life when a command such as “wiggle right toe” or “wiggle left finger”
was given by the doctors, therefore there might be little or no hope for future rehabilitation.
But, as I glanced around the “life saving room”, I wondered how anyone unconscious could
hear anything above the noises of the respirator and all the beeps and squeaks! So I began to
form a plan of my own.
I had brought a book from home, one of my son’s old favorites. Leaning as close as I
could to his ear, I began to read to him during each of my 15 minute visits. After all, I was
thinking, he had known my voice since before birth. We were bound to make some
connections.
Unfortunately, two weeks later, I had to fly back home in order to keep my job. But, just
before I left, I repeated the doctor’s commands with some positive results! A call from the
hospital later confirmed my son’s transfer to a Rehab! Real work had begun!
Then he came home! I had remarried. My husband and I both worked but managed to
take turns getting my son to and from his therapies. Home-health aides also came and went.
In time, the wheelchair was replaced by the cane. Speech improved. But there were
times, certainly, when anger and frustration mounted and we felt like throwing up our hands!
Then the rapport between my son and I would get us back on track.
His goal? Our goal for him? Independence! And, yes, the day finally came when he
was ready to live on his own with minimal assistance……...and move into his very own
apartment!
Years later, during a phone conversation with a good friend, knowledgable and wise
about brain injury, the subject turned to the various wasy that survivors can seem changed
afterward.
“But, you know,” I told her, “I think I still know my son at the core!”
There was a pause. Then she said slowly and with emphasis, “Do you know how rare
that is?”
Oh! Had I been taking our mom-and-son rapport for granted? I spent days thinking
about this.!
Yes, we were able to discuss many different subjects, my son and I. He could listen and
grasp things from my perspective; show concern as well as respect. And many of our issues, to
this day, are more quickly resolved thanks to his good sense of humor! And, should the topic of
housekeeping come up, he could even take a hint!
Yes! I knew I knew my son! Gladness spread all through me! Suddenly I wondered what
he would think about all this and dialed his number. I began to explain…..”Oh sure!” he said
simply, “I know you, Mom! I’ve always known you!”
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
ABIN-PA NETWORK NEWS—May 1, 2012—Page 5
MILITARY’S TBI TESTING
PROGRAM A FAILURE
Perhaps you have noticed that the military
has not kept up with screening soldiers or
met the standards of civilian rehabilitation for
brain injury. The article “Military;s Brain Testing
Program a Debacle” from the January 2012
issue of the Dana Foundation’s “Brain in the
News” pages 7 and 8 explains why.
Four years ago, Congress ordered the
military to test all service members for
cognitive brain function before sending
them to war and when they return.
“The U.S. military has spent more than $42
million to test every service member’s brain
to find out who suffered a traumatic brain
injury or TBI, during the Iraq and Afghanistan
wars. But an investigation by NPR and
ProPublica has found that military leaders
are refusing to carry out the testing program
as Congress ordered. Partly as a result, the
program that was supposed to fix things has
hardly helped any of the troops.”
2012 NEWSLETTER & WEB ADS
Reach 1,042 subscribers in your target
market while supporting ABIN-PA. You also
benefit from monthly distribution of over 500
additional copies by subscribers and can use
each issue to promote your services.
Your ad will remain visible in our web
archives and a link on our homepage is
available. Ads run through December 2012.
Email [email protected] for a contract.
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Issues
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Home
Page
Yes
No
Yes
No
Rate
$2,511
$974
$2024
$486
Cost/
Contact
+ Web
$.0832
+ Web
$.0415
The reasons include the choice of the test—
ANAM was developed by the military but is
not as good as ImPACT, widely used in sports.
The military is studying this choice and plans
to make its decision in 2015, after war ends.
In addition, the military is denying medical
care to outgoing troops who fail the test,
due to an order by Lt. Gen. Eric Shoomaker
in November 2008, because mobilization
centers have a shortage of trained medical
staff and care could postpone deployment.
Those with TBI are deployed anyway.
Finally, one million troops had baseline
testing, and their results are sitting in files
without follow-up because testing is not
being done when troops return home. Thus
brain injury goes undiagnosed and the
symptoms are labeled PTSD or mental illness.
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
ABIN-PA NETWORK NEWS—May 1, 2012—Page 6
COMMUNITY INTEGRATION—3/26/2012 OLTL UPDATE
NOTE: This is the text from the document attached to the Pennsylvania
Department of Aging Friday Wrap Up for March 30, 2012. Contact your
supports coordinator to learn how this will affect your services.
Pennsylvania Office of Long Term Living
TO: Home and Community-Based Service Coordination Providers
SUBJECT: OLTL changes to Community Integration
DATE: March 26, 2012
On March 7, 2012, we notified you of some modifications to the Community Integration
service definition in the COMMCARE, Independence and OBRA Waivers.
Currently, to qualify for Community Integration, an individual is required to have experienced
a “life-changing event,” a change in condition that requires a new skill set, or a move to a
new community or from a parent’s home (“precursor events”). Additionally, if the individual
qualified, Community Integration services were limited to 8 hours per week for one learning
goal or to 12 hours per week for two learning goals, for no longer than a total of 26 weeks.
To reiterate, beginning April 1, 2012 and until September 30, 2012, OLTL will consider requests
for Community Integration services beyond the limitations in the definition outlined above.
Specifically, OLTL will retain discretion to authorize Community Integration for individuals who
may have not experienced the precursor events, if OLTL determines that, despite the absence
of those precursor events, a learning goal is necessary for the individual to live in the home or
community-based setting. OLTL also will retain discretion to authorize up to 21 hours per week
of Community Integration and for periods longer than 26 weeks, if OLTL determines that
circumstances are such that a limited extension of the hourly/weekly limits will allow the
individual to achieve the previously-established learning goals. This reiteration does not
change the intent of OLTL, which was to ensure flexibility when an individual could benefit
within reason for not adhering to the limitations, or how OLTL will review the requests.
OLTL is prepared to assist service coordinators as they work with waiver participants to
consider their need for Community Integration services. Please contact OLTL, Bureau of
Individual Support regional supervisors at 717-787-8091 if you have specific questions regarding
this notice. Thank you.
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
ABIN-PA NETWORK NEWS—May 1, 2012—Page 7
TIPS FOR FAMILY CAREGIVERS
Families take on a lot of responsibility after
one of their members has a brain injury. Even
very young children help to take care of a
sibling or parent. Caregivers are essential, so
they must take care of themselves!
These tips come from the National Family
Caregivers Association, “A grassroots
organization serving all family caregivers
regardless of their relationship to the person
receiving care or that person’s medical
condition or diagnosis.”
1. Caregiving is a job and respite is your
earned right. Reward yourself with respite
breaks often.
2. Watch out for signs of depression, and
don’t delay in getting professional help
when you need it.
3. When people offer to help, accept the
offer and suggest specific things that
they can do.
4. Educate yourself about your loved one’s
condition and how to communicate
effectively with doctors.
5. There’s a difference between caring and
doing. Be open to technologies and
ideas that promote your loved one’s
independence.
6. Trust your instincts. Most of the time they’ll
lead you in the right direction.
7. Grieve for your losses, and then allow
yourself to dream new dreams.
8. Stand up for your rights as a caregiver
and a citizen.
9. Seek support from other caregivers. There
is great strength in knowing you are not
alone.
10. Caregivers often do a lot of lifting,
pushing and pulling. Be good to your
back.
Contact the National Family Caregivers
Association at 1.800.896.3650 and check out
their website at www.nfcacares.org.
SELF-EMPOWERMENT
FOR CARETAKERS
Anonymous
Up, down. Back and forth. His condition was
something I felt wrapped around. My
comings and goings were altered. Hopes
dashed.
One minute we were on the same page,
and next, there was no page.
Well, just acclimate! And do remember for
him since he tends to forget! Think! Think
ahead! Think for two!
My brain is on overload. I start leaving things
behind, forgetting time and dates. Doubting
myself. How do I keep going? I’m so tired.
Drained!
Then I saw it! Brain injury? Stroke? Pain?
Confusion? I am not this! This is not me!
Suddenly a space opened and I grasped
how diligently I had tried to live his new life
with him, while dragging my own
along….disheartened and bewildered. No
help to anyone!
“STOP!” I shout, and being to extricate
myself…to pull away gently….and to free my
soul!
“AMERICAN VETERANS WITH
BRAIN INJURY”
Check out this group at www.avbi.org. They
are providing brain injury dog tags and
wallet cards to veterans through the Bob
Woodruff Foundation. Also, free one year
subscriptions to Lumosity are offered. Check
the site for programs, services and a blog.
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.
YOUR MESSAGE TO ABIN-PA—May 1, 2012
Date:________Name:__________________________Phone:_______________Need a call?___
Street:____________________________Apt:_____City:________________State:___Zip:________
County:______________________Survivor:___ Family:___ Other:___ Change of Address?___
Email:________________________________________________ Change to email delivery?___
Apartment or Business Name:_______________________________ United Way: #45813?___
Donation to ABIN-PA: Sending My Check #_______ for $_______. Employer Match____.
In Memory Of:__________________________ Family contact person:_____________________
In Honor Of:________________________________________________________________________
Address for Notice:_________________________________________________________Apt:____
City:______________________________State:___Zip:______Other:_________________________
5th Anniversary Luncheon:
____$35
___$20 Low income
___Scholarship
___$50 (Name listed in program) ___$100 Business card size ad in program (jpg file)
Make check out to ABIN-PA and mail to: ABIN-PA, 2275 Glenview Drive, Lansdale PA 19446.
PeerConnect: ____Please match me up with a phone or email buddy.
_______________________________________________________________________________________________________________
ABIN-PA is a 501(c)(3) Pennsylvania nonprofit corporation. Contributions are tax deductible.
The official registration and financial information of the Acquired Brain Injury Network of Pennsylvania, Inc., may be
obtained from the Pennsylvania Department of State by calling toll free, within Pennsylvania, 1 (800) 732-0999.
ACQUIRED BRAIN INJURY NETWORK
OF PENNSYLVANIA, INC.
2275 Glenview Drive
Lansdale PA 19446-6082
ADDRESS SERVICE REQUESTED
©2012 Acquired Brain Injury Network of Pennsylvania, Inc.
PERMISSION GRANTED TO PHOTOCOPY AND DISTRIBUTE UNCHANGED AND AT NO CHARGE TO ALL WHO ARE INTERESTED.