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.