Parents

General
Interest
CPABC news news
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Ce r e b r a l Pa l s y As s o c i a t i o n o f Br i t i s h Co l u mb i a f a l l 2 0 0 8
Merry Christmas and/or Happy Holidays!
We are coming close to the end of 2008 and
nearly 15 months away from the Olympics
and Para-Olympics. What an opportunity
this is for all British Columbians, including
us. Here is a question that I think is worth
some discussion: What mark do we as an
organization and as individuals want to
leave as a result of BC hosting the Games?
I welcome your comments.
Our Board of Directors continues to move
forward with CPABCs long range strategic
plan and we remain committed to the same
priorities:
Build on Knowledge stay current
with research, medical information and
technology that impact people with cerebral
palsy
Ensure that our lending library
stays current balancing this with the fact
that most information can now be found
online via the Internet
Words from the
President
Communication is to remain a
top priority hire additional staff that
specialize in public relations and related
competences.
Continue to offer our Roundtable
Newsletter, with its new look, on a quarterly
basis
Increase funding to our Education
Bursary Fund - offer more money to more
students with CP
Acquire the necessary technology
and equipment needed to make these
priorities achievable
Acquire additional resources to
continue with pursuing advocacy initiatives
this could include establishing support
groups for our members
Jim Watson continues to assist Feri Dehdar,
our Director of Programs and Administration,
and myself with contacting and meeting
donors and potential donors. Jim led the
way to the great success in the building up
of funds in the Tanabe Education Bursary
Fund.
Through our affiliation with the United
Cerebral Palsy, we are better able to stay
current on new advances in research,
medical information and technology that
will benefit children and adults with CP.
It is with great pride to again acknowledge
that in the summer of 2008, CPABC revived
the campership fund. We had the pleasure
of sending kids with CP to summer camps
of their choice.
CPABC continues to be involved with
representation of Board members to the
Provincial Equipment & Assistive Device
Committee and the Emergency Planning
and Preparedness Initiatives.
All of this is a great start and there is much
more to be done. Our fundraising target
remains at $350,000. We raised close to
$75,000 leaving us with a challenge of
approx. $275,000. We need you as members
and we need you as donors.
I acknowledge that for many this Christmas
season will be a bit leaner with people
thinking twice about their expenses. I still
ask that you continue, increase, or start to
include CPABC in your Christmas/Seasonal
donations. Consider a commitment to
making regular monthly contributions.
Every dollar every cent will get us closer
to reaching our goals. What can you
contribute??
I, on behalf of the Board of Directors, would
like to wish you and your family all the best
during the holiday season. Stay safe and
have a Happy New Year.
Your President,
Craig Langston
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CPABC news fall 2008
What has the CPABC
been up to?
The Cerebral Palsy Association of BC (CPABC)
is a charitable organization, established
in 1954, thanks to a group of concerned
parents who wanted the best possible
opportunities for their children living with
Cerebral Palsy. Today we provide support,
education and information to over 36,000
people living with CP and their families
as well as education and information to
professionals, students, organizations and
community groups.
As the Knowledge Centre for Cerebral
Palsy we offer the following services:
Family and Individual Support: Our part-
time support worker is an information and
referral specialist who connects and supports
people living with CP with programs
and services. In the
last year, Tammy van
der Kamp handled
over 227 inquires from
basic information on CP to
complex medical questions
for professionals.
Educational Bursaries: These
are awarded twice a year to students
living with CP planning to pursue post-
secondary education or attend institutions
of higher learning the following year.
The Guide to CP: This booklet is designed to be
a general introduction for anyone interested
in Cerebral Palsy, such as parents, educators
and health professionals.
Living with CP: This manual
outlines the services available
in BC for those living with
this condition and
has been the long-
time centerpiece of our
information services.
Putting the Puzzle Together:
A manual for educators
and para-educators on
how to include children with all types
of disabilities in the so-called regular
classroom, it is required reading for the
Kwantlen University College course for
community and classroom support workers.
It is currently being revised in conjunction
with Kwantlen College, Special Education
Teacher Assistance Program, and will be
available soon in both print and electronic
format.
Library: Our library contains
books and videos
concerning Cerebral
Palsy that are useful to
parents, professionals,
and those living with CP.
We acquired 7 new books
and 23 DVD this year and lent
out many resources to British
Columbians. For a full listing of what is
available for your use go to our website at
www.bccerebralpalsy.com
Speakers Bureau: This service raises public
awareness of Cerebral Palsy and works to
remove attitudinal barriers experienced by
those living with CP through workshops
and presentations to schools and
community groups. In the past year, Tammy
spoke to children from kindergarten
through high school at more than 10
different schools on topics ranging from
inclusion to etiology, and from providing
the motivation to succeed despite
challenges to answering questions
about CP and the aging process. She also
presented to college students at several
post-secondary institutions and to staff and
residents at a long-term care facility. She
was also able to offer a glimpse of life from
the perspective of an adult woman with a
career who happens to work
from a wheelchair.
Research information
from UCP: Through
our affiliation with
United Cerebral
Palsy, CPABC can access a wealth
of information on all aspects of CP and
pass it along to those who contact us for
information and support and to those who
attend our presentations.
Bridges to the Future: This is a collaborative
service for youth aged 15 to 24 with CP
and other physical disabilities and
their families to ensure
successful transition to
adulthood.
(continued on page 3)
Thanks to a $2,500 grant, fromthe Hamber Foundation,
our organization was able to help ten children realize their
dreams of attending a camp this summer. Read on for
some of their adventures in the sun
Charlotte Heine attended Byte Camp, in Parksville with
her sister Sarah, where they took part in a week long
claymation course.
Charlotte writes, Thank you for letting me
come to Byte Camp. I know that it cost lots
of money. We had to put a lot of effort into
(camp) but it was very fun because we got to
make movies. And then there was the matter
of animating (our movie). We had to do it one
motion at a time. We also added sound and
it was very interesting. You can view the girls
video at www.my.bytecamp.ca/claymation39
click on Sarah and Charlotte.
Angel and Joudelie King attended a camp
Going to Camp was Fun!
Thank you CP Association!
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the universitys medical and dental
curricula.
CPABC contributed $500 to Agur Lake
Camp project. The camp will be unique
in BC providing fun, respite and support
for children with special needs and their
families. For more information visit
www.agurlakecamp.ca
Tammy facilitates a teen group for the
Surrey School Board for teen girls who
have chronic medical conditions.
The CPABC has worked with Muscular
Dystrophy Canada to develop, deliver
and evaluate their MuscleFacts school
education program designed to
increase awareness and knowledge
about inclusion for students with
disability.
We receive requests for
information from as far away as
England, US, Australia, Pakistan,
Iran, and the rest of Canada.
We operate our
organization with three part-time
staff persons: Feri Dehdar (Director of
Programs and Administration), Tammy
van der Kamp (Family and Individual
Support Worker) and Wendy Hawryzki
(Administrative Assistant).
As you can see, the CPABC was very active in 2008.
We can always use additional funds to continue our
services. Think of us as you draw up your Christmas
list. Any size donation allows us to purchase books,
print our booklet and updated manuals, maintain our
toll-free inquiry line, and continue our other services.
Please see the donation form on the
last page.
Thank you very much
for your support!
called Moving to Higher Ground. Mom
writes the following, Without your support,
it would not have been possible for us to
send the children (to camp) and we feel
blessed to have had the opportunity. It was
an amazing week lled with fun, crafts, and
games. Everyday when I picked the girls up
they would complain about having to come
home! On our 30 minutes drive there were
non-stop details about the fun they had and
the people they had met.
Hailey Miller attended Zajac Ranch. Her mom
writes, We truly have peace of mind that
Haileys best interests are taken into account
at Zajac Ranch. The staff understand her
disability and Hailey is kept safe at all times.
Some of the reasons that Hailey loves this
camp and that she can go there and just be
a kid. All of the campers get to participate in
all of the activities regardless of their level of
ability, which means Hailey is never left on the
sidelines watching others have fun.
Alyssa Choinicki has attended Sassamat camp
for the past two summers. She has had the
opportunity to go on hikes, canoe, kayak, play
games and make crafts. What impressed her
momthe most was
watching how kind
the other children
were to Alyssa. This
camp gave Alyssa
the opportunity
to feel just like a
regular kid.
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(continued from page 2)
Website: Our website
provides general
information about
Cerebral Palsy and links people
with others living with this condition
and with groups supporting those with CP.
Since January 2008 our website has received
over 296,000 hits!
Roundtable: Our Roundtable Newsletter
goes out to over 900 members and other
community partners. It is produced on a
quarterly basis to keep members up to date
as to what is going on in the Association
and the larger disabled community.
Enquiry CP: Our North American
toll-free number 1-800-663-0004 is used for
parent and individual support, information,
resources, and referrals.
For your information:
Our organization is 54 years old. It
began in February 1954 by a concerned
group of parents of children with CP.
Today we have a membership of 900.
We provide services to about 12,000
people living with CP in British
Columbia. Adding family members to
this number means that there are over
36,000 people in our province whose
lives are directly touched by Cerebral
Palsy. In addition, the 77 Infant and
Child Development Centres, 1700
public schools libraries and 70 public
libraries across BC regularly request
our literature and resource materials.
Our office is an accessible space located
in downtown Vancouver.
The CPABC is like a tree. The CP
community is the roots and our CP
services make up the branches.
Free copies of the revised Guide to CP
booklet are available on request and
downloadable from our website. Living
with CP manual is available at no cost
to parents and those living with CP and
students.
In August 2008 the CPABC awarded
seven bursaries at $1000
each to seven students living
with CP to assist with post-
secondary education.
In August 2008, our Association
provided 10 children with $2500
to attend a special needs camp.
Since 2006 the CPABC has
maintained a strong and successful
partnership with Muscular Dystrophy
Canada, BC Paraplegic and Spina
Bifida to run Bridges to the Future
Program, which provides support
to youth with physical disabilities
dealing with the transition from
adolescence to adulthood.
Michele Cohen and her group of
climbers brought attention to the
CPABC to a mountaintop in Nepal and
was instrumental in raising $2470 in
donations for the Association.
Tammy has been part of the Medical
Dental Community Advisory Committee
at the UBC Faculty of Medicine,
where she lends her expertise and
provides input on disability issues for
Cerebral Palsy Association of BC - Tanabe Bursary Summer 2008
On The Road:
Kinsmen in Kelowna
From left to right, Tammy (CPABC),
Doug Robinson (National Kinsmen President)
and Josh Mclean (Aldergrove Kinsmen President)
What a pleasure it was to represent the
Cerebral Palsy Association of BC (CPABC)
at this years Kinsmen Foundations
Annual General Meeting on October 19, in
beautiful Kelowna, BC.I was happy to speak
to the assembled Kinsmen and Kinettes
to acknowledge Kinsmen Foundation
generosity. Thanks to Kinsmen Foundation
Chair Philip Jewell, and Chief Executive
Officer Jim Watson, the CPABC s Tanabe
Bursary program got a significant boost.
This years Kinsmen Foundation contribution
to our Bursary Program is most welcome.
Beginning in 2008, the Kinsmen Foundation
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CPABC news fall 2008

This summer the Cerebral Palsy
Association of BC was delighted to award
bursaries to the following individuals
with CP:
Janelle Armstrong
Matthew D. Flint
Julia Halipchuk
Stanley Sipchenko
Mellisa Markin
Tara Kowalski
Evan Bret Reid
They are each provided with a $1000
bursary to aid them with their schooling.
CPABC congratulates all the winners; we
are delighted to help young people with CP
get ahead with their
lives through our
Bursary Program.
Janelle Armstrong Julia Halipchuk Mellisa Markin StanleySipchenko Matthew D. Flint
Educational Bursaries - Winter 2009
The Cerebral Palsy Association is pleased to announce that we will be offering thirteen
bursaries of $1,000 each in January 2009. Applicants must be 18 or older, have CP and
plan to attend an institution of higher learning the following year.
Application deadline is December 19, 2008.
For full details call our ofce at 604-408-9484, toll free 1-800-663-0004
or go to www.bccerebralpalsy.com., click on Services then scroll down to Education
and click on Educational Bursaries.
has committed $50,000.00 dollars over five
years, to support our Tanabe Bursary. This
represents a significant increase over past
years. The actual Tanabe Bursary recipients
are probably the most grateful for Kinsmens
support.
Julia Halipchuk from Princeton is studying
architecture at UBC. Stanley Sipchenko
of Hosmer is after a Computer Science
degree from the University of Lethbridge.
Evan Reid, Mellisa Markin, Matt Flint, Tara
Kowalski and Janelle Armstrong are all
able to pursue post secondary education
because of the Tanabe Bursary.
These young people have already dealt
with significant challenges related to cp in
their lives. So we know they have what it
takes to go after a goal. They are our future
professionals, citizens, and leaders. They
are also role models for people with cp and
other disabilities.
As a person with a disability, I know how
difficult it can be just managing the activities
of daily living. Going after post-secondary
education can be a challenge even for people
without disabilities so I was very happy
to acknowledge the Kinsmen Foundations
support of our Bursary program.
The weather was lovely, too, for the most
part, which helped to make networking a
bit easier. I was able to meet with Les Ebl,
a CPABC Board Member who helped me
get together with other Kelowna agencies.
Les set up a meeting for me with People
in Motions Executive Director Paul Arney.
Mr. Arney and I exchanged information
about our respective organizations, and
he provided important Okanagan contact
information. I also met with Arlene Pilgrim,
a Rehab Consultant at BC Paraplegic
Associations Kelowna Regional Office.
Arlene has been instrumental in providing
invaluable assistance to CPABC clients in
the area. It was nice to finally put faces to
names formerly known only through email
and telephone correspondence.
On a personal note, it was nice to get out
of the city for a while, and visit with family
and friends. Thanks are due to the Kinsmen
Foundation not only for their philanthropy,
but also for taking the time to ensure that
I was well taken care of during my stay
in Kelowna. Id also like to thank Robert
Raven for providing an accessible pit-stop
for me, and a doggie play-date for PADS
Service Dog Breeze, Jasmine Sherban for
excellent care in unusual circumstances,
and Dad Conrad van der Kamp for taking
time away from work to provide his always
good-natured chauffeuring skills.
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Mini-Miracles Childrens Clothing
Mini-Miracles is a BC company that produces quality clothing for children with
special needs. Their clothing is produced with the following needs in mind:
-Limited range of motion and impaired dexterity
-G-Tube feeding
-Wheelchair use
-Contractures
-Toilet/changing needs
-Catheters & Colostomy bags
-IV tubes
-Rigidity
For more information phone: 250-478-6331
or visit www.minimiracles.ca to view a current catalogue.
Saturday Unlimited
Vancouver
Youth with and without disabilities have the opportunity
to socialize through a peer-support program during
Saturday Unlimited. This unique program offers social
and recreational opportunities for youth ages 13 18.
Experienced staff, accessible vehicles and one-to-one
peer volunteers maximize participation and a positive
experience within the program. Location: Britannia
Community Center, 1661 Napier Street, 10 am-3 pm,
Saturdays call 604-718-5800 to register.
Michele Cohen, an experienced mountain climber, Vancouver resident, and travel
professional led an entourage of 14 climbers to the 6400 meter summit of Mera Peak,
in Nepal, from October 19 to November 10, 2008. Her challenge was to get her group
safely up Mera Peak and back down again. They faced the demands of trekking at
high altitudes in the Himalayas and camping in sub-zero temperatures for 17 days.
But Micheles thoughts and efforts were not only focused on herself and the safety
of her climbers. She was capitalizing on her experience to help raise money and bring
awareness to worthwhile causes such as Cerebral Palsy.
The Cerebral Palsy Association of BC recognizes Michele Cohen and her crews
amazing effort in bringing attention to the summit of Nepal and being influential in
raising $2470 in donations for the Association. Way to go Michele!
Cerebral Palsy Association of BC in Nepal!
CPABC & United Cerebral Palsy (UCP)
In June of 2008, the CPABC became an official
international affiliate of United Cerebral Palsy (UCP).
UCP was founded by parents in 1949. It has been
committed for more than 55 years to change and
progress for people with disabilities. UCP has
become a strong force in advocacy. Its network of
affiliates, both across the United States and
internationally, strives to ensure inclusion for
persons with disabilities in every facet of society,
from classroom to community, from the Web to
the workplace. UCPs mission, to advance the
independence, productivity, and full citizenship
of people with disabilities, dovetails nicely
with our own.
As a UCP affiliate, CPABC stands to gain practical
benefits such as supports with respect to fundraising,
marketing and communications, best practices,
and programmatic support. CPABCs members
and Community Partners will have access to
UCPs resources. We also stand to benefit from the
considerable name-brand recognition and knowledge
base resources associated with UCP. Please contact
Tammy van der Kamp at 604-408-9484 if you have
any questions or to access UCP resources.
CPABC anticipates its relationship with United
Cerebral Palsy maturing to one that is mutually
beneficial, which ultimately supports those touched
by cp in British Columbia.
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general interest fall 2008
Reaching New Heights
For sixteen years, it has been a Seycove
School tradition that Ryan Earls Geography
12 classes will hike to the Black Tusk area
to see the work of glaciers and volcanoes
first-hand. It is an event full of challenge;
with an 8km climb carrying a full pack, and
a cold, possibly wet and snowy night in a
tent. Perhaps because of the shared effort
and discomforts, as much as for the scenery,
it is among the most memorable events of
the grade 12 year. This year may have been
the most memorable of all. Three years ago,
as we were preparing for the trip, a grade 9
student asked if Black Tusk was wheelchair
accessible. Cerebral Palsy had kept him
from walking, but it had not dampened
Low Fee Counselling Services
Vancouver
Living Systems Counselling offers
professional counselling on a sliding fee
scale. Fees range from $15 to $120 per
session depending on gross family income
before taxes. They have offices on the
North Shore and throughout Vancouver.
Waiting lists are usually minimal with
flexible appointment times. They are
funded by the gaming commission
and North Shore and city of Vancouver
grants. Phone 604-926-5496 for more
information.
Shayne DeWildts desire to participate.
He was well known
around the school
and community,
fearlessly piloting
his power chair in all
weather. His question
about Black Tusk may
have seemed nave,
but it reflected his
determination to
try new things, and
to be a part of as
many activities as the
school could offer.
Then this past spring
Craig Johnston, a
Special Education
Aide who has been
an integral part of
this trip every year, heard about a new
kind of wheelchair especially designed to
handle rough terrain. Two local agencies,
Interfit and the Disabilities Foundation,
were making these chairs available in order
to increase access to the outdoors. Shayne
decided to give it a try, and went on a couple
of short hikes organized by Interfit on North
Shore trails. He loved the experience, and
suddenly we at Seycove began to wonder
if Black Tusk could be wheelchair accessible
after all.
It was. Propelled by his own determination
and the collective muscle of his fifty Seycove
classmates, Shayne was able to experience
the wild mountains, the glaciers and cinder
cones, the turquoise lakes, and the joy of
a remarkable group achievement. Sitting
at 7000 ft, watching the marmots and
whiskyjacks, he said, This is so cool! He
was so right.
Ryan Earl and Craig Johnston
parents
Page 6
Break through the silence solutions for those who cant speak
Speech disabilities can be caused by a variety of conditions including cerebral palsy.
Approximately eight out of every 100 people are unable to use speech as their primary
means of communication. About 94% of those do not get access to assistive speech
technology because they do not know it exists.
Voice for living is an information resource exchange where you can discover
how an array of tools and techniques, including augmentative and alternative
communication (AAC) devices, can open a whole new world of possibilities for those
who cant speak.
Voice offers a number of online services where people can share ideas and support one
another. Members of the Voice community can have their speech questions answered
by speech-language pathologists through Ask the Expert. Information can be accessed
on the latest technology and success stories heard. Live chats and interactive presen-
tations by augmented communicators, clinical experts and special educators are also
available. Go to www.voiceforliving.com to sign up for your free membership and start
accessing these services today.
Page 7 Page 7
Why not come out and join the Disabled
Independent Gardeners Association (DIGA)
for two interesting upcoming workshops.
Bromelaids as House Plants
Saturday, Jan 17 1:00 2:30 pm
In gym of GF Strong Rehab Centre, 4255
Laurel Street, Vancouver
Cost $5, parking is free in visitors parking
lot
Dont know what a Bromelaid is? Dont
worry about it. William Bischoff will in-
troduce you to five that are best suited for
Massage why not?
613 Columbia St., New Westminter
Reduce your stress level and spasticity.
Increase your range of motion and
circulation. FEEL GOOD! AhhhWest
Coast college of Massage Therapy is
offering Thursday evening treatments,
for $12, for those with cerebral palsy.
Call 604-520-1830 to reserve your time.
Please mention that you are booking into
the Cerebral Palsy Clinic.
To register for either lecture phone
Betty at 604-688-6464, ext. 106 or email:
[email protected]
Speaking Through Art
A.J. Brown started to explore various arts in
1999 as a way to overcome personal fears.
She had a brain injury during birth that
caused her to become Deaf and to have a
condition that resembles Cerebral Palsy. As a
result, she has difficulty speaking and using
sign language. She uses a Lightwriter, a
portable communication device from TIL,
which speaks for her when she types out
words in written English.
You can see some of her art
online at
www.handsandpurrs.ca.
(Article reprinted with
permission from
balance October 2008
newsletter a publication of BC Association for
Individualized Technology and Supports for
People with Disabilities (BCITS).
house and window culture. Enjoy a slide
show and plant samples.
Travels of a Modern Plant Hunter
Monday, February 9 12:00 noon 1:15
pm
Reception centre at the UBC Botanical
Garden, 6804 SW marine Drive NW of
the intersection of 16th Ave.
Cost $5, parking is free
Ron Long, a well known photographer
and plant enthusiast will talk about his
2008 travels in search of new plants and
wildflowers. Ron will share his impressive
collection from his hunting trips with a
slide show.
The Underwater World Awaits!
Vancouver
The Pacific Scuba Diving Challenge Club
was founded by Ron Stead about 20 years
ago. Its purpose was to get those with dis-
abilities involved in scuba diving. Monthly
meetings are held at GF Strong in Van-
couver. There are also pool sessions, boat
dives and barbecue day trips.
Marc has been teaching diving to those
with physical disabilities for 15 years. He
says, Anybody can learn from us. So
do you want to take the plunge and give
scuba diving a try? Give Marc a call at
604-432-6636 or 604-777-5244.
Winter Blues? Love Plants?
Vancouver area
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Cerebral PalsyAssociation of British Columbia
801-409 GranvilleSt.
Vancouver, BC V6C 1T2
Phone: 604.408.9484
Toll-Free(EnquiryCP): 1.800.663.0004
Fax: 604.408.9489
Email: [email protected]
OfceHrs: 9 AM to 5PM, Mondayto Thursday
Membership fee: $20
or whatever you can anord.
Donation: | would llke to make a donatlon to
support the servlces and programs of the
Cerebral Palsy Assoclatlon of 8C. |ncome tax
recelpts are only lssued for donatlons of $l0 or
more, unless requested.
$l00 $75 $50 $25
My cholce:
Method of Payment: | have enclosed a
cheque payable to the CPA8C or:
vlsa #
Lxplry Date
Name on Card
Today's Date
Slgnature
Please mall to:
Cerebral Palsy Association of BC
80l- 409 Granvllle Street
vancouver, 8C v6C lT2
Charltable Peglstratlon 8uslness Number l0690 4204 PP000l
Nowmore than ever before
your membership
will help to
Become a member today!
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Cerebral Palsy Association of British Columbia fall 2008
Please recycle this
Roundtable by passing
it along to someone else!
CPABC Boar d Member s
CPABC St af f
CRAIGLANGSTON
TRISHMCKAY
JONN OLLDYM
DON RENAUD
TONY KRUSE
KENTLOFTSGARD
RONALDBLACKMORE
LIZCALDER
LESEBL
TERREANEDERRICK
President
VicePresident
Treasurer
Secretary
FERI DEHDAR
TAMMY VAN DERKAMP
WENDY HAWRYZKI
Director of
Programs &
Administration
Family&
Individual
Support Worker
Administrative
Assistant
T r a n s l i n k
fails?!!!
Do you, or someone you care for, use a
mobility device and use public transit?
Have you had problems with wheelchair
lifts not working, drivers not wanting to
take the time to load you or not wanting to
strap your wheelchair down?
We want to hear from you.
We believe that Translink
needs to be more accessible
for the disabled.
After all this is
a public transit
system. We all
pay for it.
There is a young
man in Port Moody
that has only made it
home from school three
times since the beman has
called his parents more times
then they care to count to
come and pick him up at the
side of the road. Translink in
this case has not followed
policy nor does it appear that
they intend to.
Tell us your story/stories via
[email protected]