Wahana Keluarga Cerebral Palsy (WKCP) organisation – Forum for the Cerebral Palsy Family – is educating families by providing discussions, training and knowledge to help them better understand and manage cerebral palsy (CP).
Their work is grounded by a very deep desire to know about all the problems that parents and children with CP can face.
“We focus on encouraging CP families to be strong and smart. We hold monthly discussions, integrated services for children with CP and also training for parents and student volunteers”, Reny Indrawati, one of the founders of WKCP, said.
“We want to build confidence among parents, and also help children with CP gain knowledge and new friends. We try to invite professionals whose work is related to CP. In 2015, we had a visit from Turkish orthopaedic paediatric and rehabilitation professors.”
“Our services include monitoring height, weight and head circumference of children with CP. The training that we do is sensory integration, neurodevelopmental treatment, hydrotherapy and augmentative alternative communication.”
“By doing all those programs, we are hoping that parents will be smart and their child will get the benefits of that”, she said.
The challenges that WKCP tackle cover four different sectors – health, education, social and employment.
“Knowledge of CP is not equal in every medical team and because of that there are delays in the handling of CP, including in rehabilitation. In Indonesia, when your child is diagnosed with CP, rehabilitation will recommend you do physiotherapy as a first priority and won’t advise you to do any other kind of therapy”, Reny said.
“They tell you that because your child is not yet able to move or walk he or she only needs physiotherapy. Meanwhile, your child getting bigger and it is more difficult to teach him or her to communicate or use their fine motor skills.”
“Another issue is that many CP families live too far from health services and have difficulty getting their child to regular therapy sessions”, she said.
That is why WKCP set out to encourage parents to be smart.
Reny’s passion for helping improve not just the lives of children with CP but also their family’s lives stems from her personal experience. She has a son with CP.
“My life has changed a lot since having my son and starting WKCP. In the beginning, I didn’t know what I needed to do for my son. Then when we all gathered together in WKCP, I found my energy and my passion to learn and to do something for my son and his friends”, Reny said.
“I am convinced that when parents learn all the information they need it helps their child and their friends, and also the community”, she said.
WKCP are tackling the issue of people with CP not having opportunities to study formally, due to difficulties getting to and from school and a lack of educators who understand how to teach children with CP. In addition, they are trying to address various social issues around CP in Indonesia.
“Due to a lack public knowledge about CP, some people think CP children or adults are mentally retarded so they bully them or don’t want to be their friend. Also, public places are not accessible for children with CP with or without wheelchair”, Reny said.
When it comes to employment, this lack of societal knowledge about CP means there isn’t training material suitable for people with CP and they struggle to find a job.
WKCP last year celebrated World Cerebral Palsy Day by holding family training attended by more than 70 families, featuring speakers on a range of topics. This was a big achievement, and was followed up by medical training for medical workers and therapists.
Starting out with just eight CP families who gathered to discuss their vision, the organisation has grown into something a lot bigger. In 2016, they will have an MOU with Bantul’s Health Department, an MOU with Gadjah Mada University’s Hospital, and a research project with Sydney University. They hope one day to build a Learning Centre for CP.
“Our dream is that we will have a library, life skills training centre, therapy training centre, and school. In the learning centre, we will have books and a database about CP for children and adults. It is important that any book which is still in English is translated into Indonesian language so any parent can read it”, Reny said.
“For life skills training, we are planning to have collaborations with private companies or government so adults with CP can do internships and gain knowledge, skills and confidence.”
“We are hoping WKCP will be a place for every CP parent from all over Indonesia to learn, and that it will be able to be copied in any part of the world”, she said.
The organisation relies on donations and volunteers to keep going. It’s definitely hard work, but Reny stays positive.
“Doing so many activities in WKCP doesn’t always reduce our problems, but at least we can be happy because we are together. We can cry and we can laugh together, so we can move on and gain energy again for our life”, Reny said.