By Maureen
Bennie
Linda Cucek of Port Moody, BC may be a soft-spoken,
gentle, polite woman but she is no shrinking violet.
Linda has been fighting the government of British
Columbia for several years over an issue that
is most precious to her - a treatment program
for her 18-year-old son James. James has autism,
a neurological disorder that impairs communication
and affects social behavior. Presently James has
no program because the BC government provides
no funding for autistic children over the age
of 6. Linda wants James to have the Lovaas program
developed by Dr. Lovaas of UCLA. The program is
also known as ABA - Applied Behavioral Analysis.
It is scientifically proven to be the most effective
program for helping improve the condition of children
with autism.
So why is the government fighting with Linda
Cucek? Is her request for help so unreasonable?
The government is resisting because of the cost
of an ABA program. ABA requires 40 hours of intervention
a week with a trained therapist. The cost for
ABA is between $40,000 and $60,000 per year. This
may seem like a high price for taxpayers but not
administering the program is more costly. Without
intervention these children will end up institutionalized
at a cost of up to $250,000 a year. If parents
like Linda are willing to look after a special
needs child, shouldn't the government be willing
to help these parents?
BC Premier Gordon Campbell used to think so
before he was elected. At a rally in Port Moody
on April 23, 2001, a conversation was recorded
between Mrs. Cucek and Gordon Campbell. He clearly
states in the transcript that Mrs. Cucek's son
James will have the Lovaas treatment with his
help. He and the present Minister of State for
Early Childhood Development Linda Reid said they
would support treatments for children with autism.
Now that they are elected, they are breaking their
promise. A broken promise such as this one is
destroying the lives of the Cuceks and other families
like them.
The one who suffers the most is James. In local
British Columbia newscasts seen over the past
two years, viewers are privy to seeing the amazing
musical talent of James Cucek. He plays piano
beautifully although he has never had lessons.
He has a dream of becoming like Glenn Gould, another
former sufferer of an Autism Spectrum Disorder
(ASD) and one of Canada's greatest musical talents.
James is not playing as much as he used to because
of the pain he suffers while taking various prescription
medications. Sometimes he has to be hospitalized
to be stabilized on medications. Stan and Linda
watch helplessly as their son James crawls along
the hospital corridors. "I want my boy back,"
laments Linda.
James is afraid to be away from his mother so
she spends her days in his company. It's not easy
because James does not like to go out in public
places. He finds peace being at home playing his
keyboards, but this is not a full life for James.
Linda and Stan hope he can eventually move out
of home into assisted living. With ABA Lovaas
therapy, James' behavior could improve and help
him to build social skills. Anyone who meets James
can see he is an intelligent young man. "I
heard that the Lovaas treatment could cure James
up to 80%. This is my goal to see him get this
therapy to make sure his dreams come true,"
states Linda.
Linda recently enlisted the help of the most
famous person with autism, Kim Peek. He became
famous when Dustin Hoffman portrayed him in the
movie "Rainman". Kim has amazing gifts
such as memory and mathematical skills. Kim and
his father Fran were recently in BC for the Autism
2002 Conference: Defining the Leading Edge. Conference
delegates were taken with Kim and his father who
are helping the Cuceks in their fight for therapy
for older children with autism. The Peeks have
brought recognition to the autism problem through
public speaking engagements throughout North America.
On October 9, 2002 victory was Linda's and all
those who fought with her. The BC Liberal Government
lost in the Court of Appeals and were ordered
to stop discriminating against people with autism
and start providing treatment. The Court of Appeal
states "by refusing to fund or provide medically
necessary autism treatment - also known as Intensive
Behavioral Intervention or Lovaas type autism
treatment - the government is in violation of
Canada's constitution and the Charter rights of
children with autism."
How is the Cucek family doing after the favorable
ruling? " I have no support because James'
Youth Care worker's contract was up October 25th.
James was waiting by the door for Chris, his worker,
and she never came. It was very sad for James,"
said Linda. Minister Linda Reid has sent two people
to Linda's home to talk about James' therapy program.
They want to modify the Lovaas treatment, something
that worries Linda because she doesn't want James
to have a watered down version of a Lovaas program.
There is still no therapy program in place for
James.
There are roughly 30,000 children with autism
in Canada. The number of new cases diagnosed is
growing rapidly each year. Autism is an epidemic
that no government should ignore. What is most
appalling is that parents like Linda Cucek have
to spend so much energy fighting for what should
be a right in Canada. Linda will continue to fight
for what she believes her son needs to have a
decent quality of life. We thank Linda for her
bravery because through her struggle she will
help all Canadian children with autism have the
best life they can. "A promise is a promise,"
says Linda.
Maureen Bennie is the mother of two children
with autism.
|