Sri Lanka’s first tri-lingual online channel on Disability was launched on YouTube, recently. The YouTube platform is an effective way to reach families who do not have regular access to support.

A Director of National Centre for Children with Cerebral Palsy and other Development Disorders (NCCCPDD), Dr Gopi Kitnasamy told the Sunday Observer the reason for launching this new channel at this time around, which gives information on looking after children to carers.

Excerpts:

Q. The Merril J Fernando Charitable Foundation in cooperation with the NCCCPDD last week launched Sri Lanka’s first tri-lingual online channel on Disability on YouTube. As a Director of NCCCPDD tell us what was the reason for launching this new channel at this time around?

A. Although there has been a major change in perception over the past few years, people with disabilities are perceived as unable to accomplish anything and are treated as invalids. While there may be severe mobility issues, this is untrue. From a very young age, children with disabilities regardless of the disorder need to be stimulated and engage socially with others. What we also realised is that often, there are facilities for the individuals, but very little in terms of support for their caregivers and parents so that they may be better equipped to deal with the child’s disability.

During the Covid-19 lockdown, we saw a surge in the viewership of YouTube videos in Sri Lanka. We have been using multiple awareness-raising strategies for childhood disabilities and in the current situation, the YouTube platform is an effective way to reach families who do not have regular access to support. The disability channel will disseminate information, provide a range of resources for families, demonstrate home based therapeutic activities and issue practical guidance for the care of children with disabilities. It aims to support families, caregivers and medical practitioners.

Q. The word ‘disability’ means different things to different people – and sometimes people don’t identify as having a disability at all. How do you define Disability in general?

A. Disability is a physical or a mental condition that makes it difficult for someone to do the things that other people do. It can be visible or invisible. According to the World Health Organization (WHO), around 15% of the global population, over a billion people – live with some form of disability. Today, disability is understood to arise from the interaction between a person’s health condition or impairment and the multitude of influencing factors in their environment. Disability is unpredictable and can happen to anyone at any age. Almost everyone will be temporarily or permanently impaired at some point in life.

Q. What are the most common types of disabilities you find in Sri Lanka in your recent studies?

A. As per the 2012 population census, there are 1.6 million persons with disabilities in Sri Lanka which is 8% of the population. The common types are physical, mental, visual and hearing. Physical disability is the most common type in Sri Lanka. However, there are others known as developmental disabilities.

These include a complex group of disorders that cause physical impairments, intellectual disabilities, speech disorders and medical conditions. Developmental disabilities are sometimes diagnosed at birth, but not easily identified until age three to six. Developmental disabilities may range from mild to severe. Some of the more common developmental disabilities include Cerebral Palsy, Autism, Downs syndrome and Intellectual disabilities.

Q. How do you recognise a disability in a very young child like an infant or toddler who is unable to express himself?

A. Early Identification is the key to success in childhood disabilities. It’s about recognising difficulties quickly, identifying and making a prompt intervention to support children and their families so that issues are tackled before they become more ingrained problems. For high risk infants, there are assessment tools such as the General Movement Assessment (GMA) which has a high predictive validity to identify neurological issues which may lead to cerebral palsy and other developmental disabilities. Infants have typical and distinct spontaneous ‘general movements’ from before birth right through to 20 weeks post term. Infants whose general movements are absent or abnormal are at higher risk of neurological conditions, in particular cerebral palsy.

Q. What about primary schoolchildren? How would a teacher or parent know if there is something wrong with the child’s behaviour?

A. Becoming aware of the warning signs and getting children the necessary help early are key to a child’s future. Some warning signs are late talking, frequent falling, lack of planning, clumsiness, unstable pencil grip, trouble interacting with peers, difficulty in following directions, poor coordination, single hand preference, easily distracted, problems with math.

Q. Adolescents? Often young people due to puberty and hormonal development undergo mood changes and act strangely becoming depressed and withdrawn or fearful of crowds. Are these symptoms some kind of disability?

A. Adolescence is a time for developing independence. Typically, adolescents exercise their independence by questioning, and sometimes breaking or testing rules and limits. Parents and health professionals must distinguish occasional errors of judgment from a pattern of misbehaviour that requires professional intervention.

Q. The fact that we have a fast growing aging population means we can expect an increasing number of senior citizens to develop various disabilities that come with age. Your comments?

A. These are some of the common nonfatal conditions that can result in various disabilities in the aging population. The best strategy for these issues is prevention with a mix of healthy eating and exercise from a young age. It is also important to ensure that older people look after their mental health as depression and loneliness are two leading causes which lead to other issues when growing old. Falls are the second leading cause of accidental or unintentional injury worldwide. Fall-related disabilities are very common in older individuals too however there are assistive devices and even shoes which may be used to mitigate this. Prevention strategies should emphasize education, training, creating safer environments, prioritizing fall-related research and establishing effective policies to reduce risk.

Q. I understand the new channel offers free on demand content for parents and caregivers of children with CP, Downs syndrome, Autism, and other childhood disabilities, who may otherwise not have regular access to such information. Tell us how it operates by way of 1)sharing information 2) giving them access to specialised therapists and doctors?

A. Children with disabilities require holistic interventions – the channel breaks the sessions down into five categories: Family Resources, Therapy, Education and Lifestyle, General Health and Advocacy. The videos will be created based on these categories by the health professionals, persons with disabilities, parents and families and other professionals working with these children. This will provide opportunities for the families to learn more about their child’s condition, early warning signs, home management strategies and preventive measures to reduce the risk of comorbidities.

The channel breaks down complex issues and therapies needed by children with disabilities so that they can be understood and practised by ordinary families. It seeks to balance training for medical professionals with support to families on caring for their children. Another key aspect is that it includes content in both Sinhalese and Tamil. This is what makes it special as there are little or no resources available in the local languages.

Q. As most children and people with disability require holistic intervention, tell us how the new channel intervenes using this approach?

A. In our approaches, we always look at the child/person as whole rather than looking at their condition alone. Our strategies are both medical and psychosocial to ensure holistic development of these children.

The birth of a child with a disability may cause serious stress for the parents and affect all the other members of the family. Understanding parental stressors can lead to appropriate interventions and support for these parents and their children with disabilities. Our channel provides the necessary support for these families on psychosocial wellbeing, warning them on early signs of associated problems, educating them on early identification and intervention, therapeutic activities in natural environments, complication preventive strategies and cost-effective self and home management skills. It also seeks to set up peer support groups so that parents/ caregivers of children with disabilities can share their issues and seek support and advice from others with similar issues.

Q. Stigma and other factors often prevent parents from seeking advice and treatment for their disabled child. How is the new channel planning to overcome these obstacles?

A. People with disabilities have been stigmatised throughout history. In many cultures, disability has been associated with curses, disease, dependence, and helplessness.

Even today, disability remains a social stigma and its impact on the individual and their entire family is not discussed openly. We hope to dispel common misconceptions, educate and sensitize the public, spread positivity and highlight the ability in each child and young adult through our channel and other media.

We seek to ensure that children and people with disabilities will soon be able to take their place as integral, contributing members of society. This is easier in the instance of a physical disability but not impossible when it comes to more developmental disabilities.

Q. Today we live in a hi tech society. What other benefits does the MJF Foundation and the NCCCPDD plan to offer for children with disabilities in the future?

A. During the lockdown, we introduced Teletherapy for the students at NCCCPDD and MJFCF’s Rainbow Centres, which has helped the continuity of services during this crisis and lockdown. It has allowed for an opportunity to review progress and monitor adherence to a child’s therapy plan that was in place before Covid-19.

Children need consistency and continuity in any type of therapy. This initiative has provided an excellent way to carryover any skills the child has previously learned, prevents regression in skills and boosts new skills, too. The overall feedback from children and parents has been very positive.

The Foundation is planning to expand the services to children in all districts of Sri Lanka. We will be launching an online solution to provide tele-screening for early Identification of childhood disabilities, tele-therapy by a multidisciplinary team, referral services to connect them with a paediatrician and mobility aids support after the need assessment.

Q. Your message to parents and caregivers of disabled persons?

A. In the current situation, the parents and carers of persons with disabilities, particularly children with special needs, should take additional safety precautions and follow Health Ministry guidance to avoid any infections. My advice would be, do not be afraid of what others will think. Having a child with a disability requires extra care and work, however it is important for him/her as well as your family that you live as regular a life as possible. This is the only way to make a difference to the perception of disability in Sri Lanka.

Q. Do you have a hotline that can be reached?

A. Our helpline number is 0777116116 and our website is www.mjffoundation.org

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