“There are mysteries which men can only guess at, which age by age they may solve only in part” ― Bram Stoker
They will never kill anyone. They will never intentionally hurt anyone. They will never verbally abuse anyone. They will never emotionally abuse anyone. They will never physically abuse anyone. But they will steal our hearts. They are part of the 40,000 people with Cerebral Palsy (CP) in Sri Lanka and the 17 million around the world, and others with Down syndrome or other developmental disorders.
Now there is an Innovative Teletherapy App to support these children with disability. Dilmah’s CSR wing – the MJF Charitable Foundation has joined hands with Millennium IT, Microsoft, Sarva and World Vision Lanka and have launched disABILITY – an App that is designed to support children with disability and their families by connecting them to expert guidance. This App is the first of its kind globally. It is available in Sinhala, Tamil and English. It offers invaluable teletherapy services for people with Cerebral Palsy (CP).
This is the power of collaboration for the common good. Microsoft provided access to its Azure platform, initiating the collaboration amongst Millennium IT and the MJF Foundation. Sarva designed and produced an infomercial which will be broadcast to help Sri Lankans overcome the stigma and isolation of people with disability.
The stigma needs to be addressed and only that will pave the way for acceptance, respect and inclusion. The Centre for Children with Cerebral Palsy and other Developmental Disorders (NCCCPDD) is a joint venture with the Cerebral Palsy Lanka Foundation opened in 2016.
World Cerebral Palsy Day fell on October 6th this year.
CEO Dilmah, Director, Trustee MJF Charitable Foundation and NCCCPDD (Centre for Children with Cerebral Palsy and other Developmental Disorders) Dilhan. C. Fernando stated that this is an exciting time and cause for celebration because these kids are getting the support and help that they badly need. Fernando added that this collaboration is indeed powerful, improving the quality of life for thousands. Fernando has nothing but sympathy for families affected by the stigma that these children have to suffer. He laments the fact that there is a lack of understanding. The problem is intensified by the lack of access to knowledge and advice. He proudly stated that the dream of his father, Merrill J. Fernando must come true. The beauty of it all is that these essential therapies will be made available to those who cannot afford those services. The greatest joy for all involved is that their efforts will touch the lives of those who really need it – the children.
“Today is a very special day as it is World Cerebral Palsy Day. But it is also a day where we take the service to our community to a whole different level! These families are often forgotten and that is the tragedy of the story. We cannot imagine the suffering faced by parents whose children are affected by CP. The burdens and difficulties faced by these parents are really heart wrenching. Our collaboration and our passion to help these children is what really makes a difference. The expertise that we provide can create real change. It takes many different personalities to form a society. If society is prejudiced towards these children and attaches a mark of disgrace, then that I feel is an injustice. I say this because these children are different in their abilities,” explained Fernando.
Fernando went on to say that we can help these children by sharing knowledge about them and how to engage with them. So, people can see them for what they really are. We need to understand, then accept and then include them.
“We must not underestimate the power of collaboration. Covid19 showed us one thing and that is without cooperation nothing can be accomplished. And this applies to all levels. What we are doing with these children, we have accomplished through team work and unity. We could never have done it alone. This is the very best of Sri Lankan expertise. This is cutting edge technology. It is all about commitment and getting the message out. We must bring about the change which is so crucial,” pointed out Fernando.
Head of Rehabilitation Services MJF Charitable Foundation/ Director NCCCPDD (Centre for Children with Cerebral Palsy and other Developmental Disorders), Gopi Kitnasamy,pointed out that the Centre for Children with Cerebral Palsy and other Developmental Disorders (NCCCPDD) is a joint venture with the Cerebral Palsy Lanka Foundation opened in 2016.
“Since then two additional centers have opened in Kalkudah and in Kandy. Approximately 400 children and youth with disability receive daily support from the four centers. These centers offer educational and therapy services. We work with the community even offering a special kind of wheelchair designed to accommodate their unique disabilities. These services are offered where and when it is needed. We also offer screening camps, where in different regions we identify children with these unique disabilities through our multi-disciplinary team. The biggest need is reaching out to these children. By saying that, I feel that there is a bit of a gap where this is concerned. There is a barrier when it comes to reaching out to these children. So, we are studying how to bridge this gap and make our services available for these children. Some of these children in wheelchair camps have never been to a hospital or seen by a doctor. This is shocking,” lamented Kitnasamy.
He said that the wheelchair camps had been started to somehow get these children out of their homes. Otherwise they are housebound. With the lockdown, the services offered to these children got interrupted. This caused a decline in the services offered. So then came the teletherapy initiative. So, through a Whatsapp group we started a teletherapy initiative. This proved successful with benefits.
“So, we decided to take this approach to the society itself – teletherapy and tele-screening. So, we got together with Millennium IT and decided to design an APP- or a solution platform. Then this was also introduced to the You Tube channel. We then did the first trilingual You Tube channel to support the families of the disabled. The good thing about this disABILITY App is that it can screen every disability and identify developmental disorders. Most parents have no knowledge about these disabilities. Here time is of the essence when identifying these disorders. The therapy needs to be started as soon as possible. Early intervention is the best way to handle these disorders,” explained Kitnasamy.
The progress of the child can also be monitored here through this APP. There are no multi-disciplinary teams in every hospital in rural areas. Through this APP whichever district you are in and whichever town you are in, you can obtain these services. This is a gift to these families who can directly obtain help.
“They can send their details to us and after answering a simple Q&A the team can identify what problem this child actually has,” stated Kitnasamy.
National Director World Vision Lanka, Dr. Dhanan Senathirajah,in his statement said that the way we treat our children and the most vulnerable in society defines our culture, society and who we are. That is why he stressed that nobody should be left behind.
“Since 1977, World Vision Sri Lanka has been serving the people of Sri Lanka in development and relief programmes. The Area Development Programme (ADP) is a long- term program spanning from 12- 15 years that primarily focuses on children and communities. We are a child focused organization. We work in 31 locations across 15 districts in Sri Lanka. We are perhaps the largest international NGO to operate in Sri Lanka. We are proud to say that we have made a significant impact in this country when it comes to the welfare of vulnerable Sri Lankan children,” said Dr. Senathirajah.
He went on to say that it is the desire and focus of World Vision to work in the most vulnerable areas in Sri Lanka. Sri Lanka has also changed a lot since the end of the war against the LTTE. However, there still are pockets of vulnerability and pockets of poverty in Sri Lanka.
“So, there are children who really suffer because their parents do not have the necessary resources or knowledge. So, this is why we are involved in this collaboration. Our work has always been community driven. We work with local government bodies and communities in identifying the needs of these communities. We have field teams who work with communities and they are able to identify where these vulnerabilities are. Cerebral Palsy is one of those needs which we have identified. So, we want to bring the fullness of life to these children. The responsibility of building up the next generation is not only in the hands of the parents but it is a responsibility of the entire community,” explained Dr. Senathirajah.
Head of Creative, SARVA, Nishantha Shantha Deva, explained that these children are extremely sensitive. They are possibly more sensitive than those who are considered ‘normal’. Deva revealed to us that he too has a sister who is disabled. But he pointed out that though these children are disabled they have pure hearts - Hearts of gold.
“We all love people who are compassionate because they are able to receive and give love. These children are sensitive and love to be loved. They are innocent and trusting. They are more sensitive that the rest of us. I have personal experience. In a way I feel that what this world needs, is humans who are sensitive. A world with so many of these people is truly a beautiful world. These children have those qualities,” said Deva.
