While the Covid-19 pandemic poses a threat to all of society, individuals with disabilities are disproportionately affected by behavioral, environmental and institutional barriers reproduced in the Covid-19 response. Many individuals with disabilities have pre-existing health conditions that make them more susceptible to contracting the virus and experience more severe symptoms when infected, leading to increased death rates.
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Q: The word ‘disability’ means different things to different people – and sometimes people don’t identify as disabled at all. Define Handicap in general.
AN: Disability is a physical or mental condition that makes it difficult for a person to do the things that other people do. It can be visible or invisible. According to the WHO, about 15 percent of the world’s population, more than a billion people, lives with some form of disability. Today, a disability is considered to arise from the interaction between a person’s health condition or disability and the multitude of influencing factors in his environment. Disability is unpredictable and can happen to anyone at any age. Almost everyone will be temporarily or permanently disabled at some point in life.
Q: What about children with disabilities? What health effects do their disabilities have on them?
AN: Childhood disability can have a lifelong impact on a person’s physical, mental and emotional health, as well as their social situation. Children with disabilities may have special needs, particularly health and education, and may need to overcome significant social and environmental barriers to fully participate in everyday life.
Q: I am aware that there are different types of disabilities, some common, some rare, some inherited and some caused by accidents. What are the most common types of disabilities you find in Sri Lanka in your most recent studies?
AN: According to the 2012 census, there are 1.6 million people with disabilities in Sri Lanka, which is eight percent of the population. The most common types of disabilities are physical, mental, visual and hearing. Detailed and accurate data collection can provide a wealth of information and exact statistics about persons with disabilities in Sri Lanka. Physical disabilities are the most common form in Sri Lanka.
However, there are also others known as developmental disorders. These include a complex group of conditions that cause physical disabilities, intellectual disabilities, speech disorders, and medical conditions. Developmental disabilities are sometimes diagnosed at birth, but more often not easily recognized until age three to six. Developmental disabilities can range from mild to severe. Some of the most common developmental disabilities include cerebral palsy, autism, Down syndrome, and intellectual disabilities.
Q: Who is most at risk for each of these types?
AN: Low birth weight, preterm birth, multiple births and infections during pregnancy are associated with an increased risk of many developmental disorders. Other common risk factors include age-related diseases, disorders, functional limitations, poor coping strategies, sedentary lifestyles and other unhealthy behaviors and poor socioeconomic conditions.
Q: How do you recognize a disability in a young child such as a baby or toddler who is unable to express themselves?
AN: Early identification is key to reducing childhood disability. It’s about recognizing difficulties quickly, identifying them and acting quickly to support children and their families so that problems are addressed before they become deeper problems.
For high-risk infants, there are assessment tools such as the General Movement Assessment (GMA), which has a high predictive value to identify neurological problems that can lead to cerebral palsy and other developmental disorders. Infants have typical and marked spontaneous “general movements” from before birth to 20 weeks after delivery. Infants whose general movements are absent or abnormal are at greater risk for neurological disorders, especially cerebral palsy.
Q: What about primary school children? How does a teacher or parent know if there is something wrong with the child’s behavior?
AN: Awareness of the warning signs and helping children early on are key to a child’s future. Some warning signs include talking late, falling frequently, lack of planning, clumsiness, unstable pencil grip, difficulty interacting with peers, difficulty following directions, poor coordination, one-handed preference, easily distracted, and problems with math.
Q: Adolescents, often young people, experience mood swings as a result of puberty and hormonal development and behave strangely depressed and withdrawn or afraid of crowds. Are these symptoms of some kind of disability?
AN: Adolescence is a time for developing independence. Most often, adolescents exercise their independence by questioning, sometimes breaking or testing rules and limits. Parents and health professionals should distinguish occasional errors of judgment from a pattern of misconduct that requires professional intervention. The seriousness and frequency of violations are guidelines. Childhood ADHD, learning disabilities, depression, and disruptive behavior disorders are common in adolescence. Adolescents whose behavior is dangerous or otherwise unacceptable despite the best efforts of their parents need professional assessment and intervention.
Q: What about parents and caregivers who work around the clock? I understand that the Disabled YouTube Channel provides free on-demand content for parents and carers of children with CP, Down Syndrome, autism and other childhood disabilities, who would otherwise not have regular access to such information. Tell us how it works by 1) sharing information 2) giving them access to specialist therapists and doctors?
AN: The children with disabilities need holistic interventions – the channel divides the sessions into five categories: family resources, therapy, education and lifestyle, general health and advocacy. The videos are created based on these categories by the health professionals, persons with disabilities, parents and families and other professionals who work with these children. This provides the families with an opportunity to learn more about their child’s condition, early warning signs, home management strategies and preventive measures to reduce the risk of co-morbidities.
The channel hands out complex problems and therapies that children with disabilities need so that they can be understood and applied by families. The channel strives to strike a balance between training for medical professionals and supporting families in caring for their children. Another important aspect of the channel is that it contains content in Sinhalese and Tamil. This is what makes it special as there are few or no resources available in the local languages
Q: You have often said that children and people with disabilities need holistic intervention. Tell us how the channel intervenes with this approach?
AN: In our approaches we always look at the child/person as a whole rather than just their condition. Our strategies are medical and psychosocial to ensure holistic development of these children. The birth of a child with a disability can cause severe stress for the parents and affect all other family members. Understanding parental stressors can lead to appropriate interventions and support for these parents and their children with disabilities. Our channel will support these families on psychosocial well-being, alerting them to early signs of associated problems, educating them on early identification and intervention, therapeutic activities in natural settings, strategies for preventing complications, and cost-effective skills for self and home management . It is also intended to set up peer support groups so that parents/carers of children with disabilities can share their problems and seek support and advice from others who may also have had similar problems.
Q: Stigma and other factors often prevent parents from seeking advice and treatment for their disabled child. How does the new station plan to overcome these obstacles?
AN: We hope to dispel common misconceptions, educate and sensitize the public, spread positivity and highlight the potential of every child and young adult through our channel and other media.
Q: Today we live in a hi-tech society. What benefits do the MJF Foundation and the NCCCPDD provide for children with disabilities during a lockdown?
AN: During the Covid-19 lockdown, we have introduced teletherapy and education services for the students in our centers. Seeing its benefits, we decided to extend this service to children in all districts of Sri Lanka. Launched on October 6, 2020 to celebrate World CP Day, the Disability Screening App aims to share knowledge, therapies and services for people with disabilities, especially children in regions of Sri Lanka where access to transportation, regular therapy and other services are limited.
The app includes guided disability screening and development, referral services to connect them with pediatricians and other experts, early identification and intervention, and teletherapeutic, educational and rehabilitation assistance, allowing caregivers to monitor progress with the guidance of the MJF’s multidisciplinary team Charitable Foundation. The app is available for Android and I-phones and can be downloaded for free from the Google Play and App Stores.
Q: Your message to parents and carers of people with disabilities?
AN: In the current situation, the parents and carers of persons with disabilities, and in particular children with special needs, must take additional safety measures to prevent infections. Everyone with disabilities and their household should follow Ministry of Health guidelines on basic protective measures during the Covid-19 outbreak, such as hand hygiene, respiratory etiquette and physical distancing. If they have trouble following basic safety precautions (for example, unable to access a sink/sink/water pump to wash hands regularly), identify adjustments 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 for your family that you lead as regular a life as possible. Only in this way can we make a difference in the perception of disability in Sri Lanka.
Q: Do you have a hotline that people with disabilities or parents of children with disabilities can reach for more information?
AN: Our helpline number is 0777116116. Our website is: www.mjffoundation.org