JOHOR BARU: The Johor Cerebral Palsy Association (JCPA) is not closing down despite its dire finances and a Covid-19 induced bleak outlook.
"How can we close down as our patients are helpless without our presence, which we strive to sustain however strained our resources," sighed Tunku Fatimah Faridah Osman, the newly-installed JCPA chairman.
Set up in 1967 when it was known as the Spastic Children's Association of Johor, the body has always had a precarious existence because of a lack of adequate funds and trained personnel.
"But more and more, children with cerebral palsy are registering with us because their parents realise that early intervention and training are vital for their children's ability to live a life that is sustainable and not overly dependent on others," said Tunku Fatimah.
Cerebral palsy refers to the effects on the locomotion and posture of individuals when the part of the brain that controls movement is impaired.
Consequent effects of this damage will have severe effects on the quality of life of the afflicted if he or she is left to their own devices.
"That is why early intervention is seen as imperative," said Tunku Fatimah, "as processes for the alleviation of this condition have become more effective with the progress of science and remedial training."
The JCPA has some 73 students registered. This enrolment is attended to by 33 staff, comprising teachers, therapists, trainers and caregivers.
She said classes for the students had to be curtailed when the Movement Control Order (MCO) was imposed on March 18. This was done out of economic considerations because MCO-induced constraints impacted adversely its fundraising and donation securing abilities.
"The Covid-19 pandemic and the accompanying MCO simply meant that our already slender resources were further strained," said Tunku Fatimah.
"We had to cut down on our classes and we could not shift things to online mode simply because the training and care we render at JCPA is necessarily hands-on.
"Nothing can substitute for sheer hands-on training which is why we need more paid trainers and even volunteers," said Tunku Fatimah.
She said the classes that JCPA holds for children follow the Malaysian School Curriculum.
"We need teachers with the skills to take care of children with special needs. This will require more funds and more expertise," said the royal.
JCPA vice chairman associate professor Dr Ballan Kannan, a senior consultant surgeon, chimed in, saying that while corporate donors or financial help are absolutely necessary, the federal ministry of education would greatly help if they could place trained personnel at JCPA on the ministry's payroll.
"This would save us a lot of financial anxiety, and the security of employment that the trainer-teachers enjoy would go a long way in making the JCPA a self-sustaining body," Dr Ballan said.
"We cannot allow the JCPA to wither on the vine. The people afflicted with cerebral palsy cannot be allowed to languish in poverty and neglect," he stressed.
He said that it will be a proud mark of the civic mindedness of society if the JCPA were a self-sustaining body, providing training and care to society's otherwise weak and helpless citizens.
"If you notice something different in your child, bring them to us so that we can detect (the possible illness) and not wait when it is too late," he said, adding that JCPA's doors are always open to children of special needs.
JCPA grew through the years as it began teaching and habilitating more children with multiple disabilities and impairments, while developing a comprehensive programme for treatment, rehabilitation and skills training for special needs children and providing jobs for 23 adults at their two workshops.