While the Covid-19 pandemic poses a threat to all of society, persons with disabilities are disproportionately impacted due to attitudinal, environmental and institutional barriers that are reproduced in the Covid-19 response. Many persons with disabilities have pre-existing health conditions that make them more susceptible to contracting the virus, experiencing more severe symptoms upon infection, leading to elevated levels of death.
The Sunday Observer spoke to Head of Rehabilitation Services, MJF Charitable Foundation, Dr Gopi Kitnasamy to find out how persons with disabilities, especially children are affected by their health issues and how they can be rehabilitated and helped to lead better quality lives.
Excerpts
Q: The word “disability” means different things to different people – and sometimes people don’t identify as having a disability at all. 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 WHO, around 15 percent of the global population, over a billion people – lives 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 about children with disabilities? What health impacts do their disabilities have on them?
A: Disability in childhood can have a lifelong impact on a person’s physical, mental and emotional health, as well as their social situation. Children with a disability may have special needs, particularly regarding health and education, and may need to negotiate significant social and environmental barriers to fully participate in everyday life.
Q: I am aware there are different types of disabilities, some common, some rare, some inherited, some caused through accidents. What are the most common types of disabilities you find in Sri Lanka in your most recent studies?
A: As per the 2012 population census, there are 1.6 million persons with disabilities in Sri Lanka which is eight percent of the population. The common types of disabilities are physical, mental, visual and hearing. Detailed and accurate data collection can provide a wealth of information and exact statistics of persons with disabilities in Sri Lanka. 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 more often, are not easily identified until ages three to six. Developmental disabilities may range from mild to severe. Some of the more common developmental disabilities include Cerebral Palsy, Autism, Down’s syndrome and Intellectual disabilities.
Q: Who are those most at risk for each of these types?
A: Low birth weight, premature birth, multiple birth and infections during pregnancy are associated with an increased risk for many developmental disabilities. Other common risk factors are age-related diseases, impairments, functional limitations, poor coping strategies, sedentary lifestyles and other unhealthy behaviours and poor socioeconomic conditions.
Q: How do you recognise a disability in a young child such as an infant or toddler who is unable to express himself?
A: Early identification is the key to mitigate 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 on 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 and 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 of 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. The severity and frequency of infractions are guides. ADHD in childhood, learning disability, depression and disruptive behavioural disorders are common in adolescence. Adolescents whose behaviour is dangerous or otherwise unacceptable despite their parents’ best efforts will need professional assessment and intervention.
Q: What about parents and care givers who work round the clock? I understand the disABILITY YouTube channel offers free on demand content for parents and caregivers of children with CP, Down 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: The 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 families. The channel seeks to balance training for medical professionals with support to families on caring for their children. Another key aspect of the channel is that it includes content in Sinhalese and Tamil. This is what makes it special as there are little or no resources available in the local languages
Q: You have often said that children and people with disability require holistic intervention. Tell us how the 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 medical and psychosocial to ensure holistic developmental of these children. The birth of a child with a disability may cause serious stress for the parents and affect all the others members of the family. Understanding parental stressors can lead to appropriate interventions and supports for these parents and their children with disabilities. Our channel will provide 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/ care givers of children with disabilities can share their issues and seek support and advice from others who may also have undergone 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: We hope to dispel common misconceptions, educate and sensitise the public, spread positivity and highlight the ability in each child and young adult through our channel and other media.
Q: Today we live in a hi-tech society. What benefits does the MJF Foundation and the NCCCPDD offer for children with disabilities during a lockdown?
A: During the Covid-19 lockdown, we introduced tele-therapy and education services for the students at our centres. Upon seeing the benefits of it, we decided to expand this service to the children in all districts of Sri Lanka. The Disability Screening app which was launched on October 6, 2020 to celebrate World CP Day, aims to share knowledge, therapies and services for people with disability, especially children in regions of Sri Lanka where access to transport, regular therapy and other services are limited.
The app includes guided disability and development screening, referral services to connect them with Paediatricians and other experts, early identification and intervention and tele-therapeutic, educational, and rehabilitation assistance, allowing caregivers to monitor progress with the guidance from MJF Charitable Foundation’s multidisciplinary team. The app is available for android and I-phones and is available free to download on the Google Play and App Stores.
Q: Your message to parents and caregivers of disabled persons?
A: In the current situation, the parents and caregivers of persons with disabilities and particularly children with special needs, should take additional safety precautions to avoid any infections. Everyone with disability and their household should follow the health ministry guidelines on basic protection measures during the Covid-19 outbreak, such as hand hygiene, respiratory etiquette and physical distancing. If they have any difficulty following the basic safety measures (for example, not able to access a hand basin/sink/water pump to wash hands regularly), identify adaptations with the support of their family members. 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 we might be able to make a difference to the perception of disability in Sri Lanka.
Q: Do you have a hotline that can be reached for more information by persons with handicaps or parents of children with disabilities?
A: Our helpline number is 0777116116. Our website is www.mjffoundation.org