With disability taking an upward curve in recent years in Sri Lanka due to various factors including accidents, surgical errors, genetic disorders and delays in early diagnosis the current need is to focus on how all differently-abled persons can be helped to play a more positive role in society. This is especially relevant in differently-abled children starting out in life who need special skills and training to help them integrate with the rest of society and lead as normal a life as possible.
The good news is that now for the first time, a new Disability App has been created for them during the Covid-19 lockdown. The new App which introduced tele-therapy and education services for disabled students is now poised to be expanded to children in all districts of Sri Lanka says Chartered Physiotherapist Dr Gopi Kitnasamy, the Head of Rehabilitation Services at MJF Charitable Foundation.
The Foundation in partnership with Millennium IT ESP were responsible for this path breaking innovation. Having worked for many years with disabled children, especially, those afflicted by the commonest and most disabling neurological disabilities in children – Cerebral Palsy, Dr. Kitnasamy in an interview with the Sunday Observer said focussing on empowering disabled children with education and skills training is key to help them play a more positive role in society.
Excerpts:
Q. Disability took centre stage last month when the world observed International Disability Day on December 3. Define Disability. Are there different types of disability?
A. Disability is a physical or a mental condition that makes it difficult for someone to do the things that others do. It can be visible or invisible. 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.
There are many types of disabilities, such as, that affect a person’s vision, movement, thinking, remembering, learning, communicating, hearing, mental health and social relationships. 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. What is the current statistics of the number of persons living with disabilities globally and in Sri Lanka?
A. Over one billion people are estimated to live with some form of disability which is about 15% of the world’s population. This number is increasing through population growth, ageing and increase in chronic health conditions. Other factors such as road traffic accidents, violence and disasters contribute to the growing numbers. Eighty percent of them live in developing countries.
As per the 2012 population census, there are 1.6 million persons with disabilities in Sri Lanka which is 8% of the population. I would say this figure is not the exact number, as it didn’t cover all types of disabilities and not all persons with disabilities were included. Detailed and accurate data collection can provide a wealth of information and exact statistics of persons with disabilities in Sri Lanka.
Q. Why has a special day been set aside for observing this day?
A. The International Day of Disabled Persons is observed on December 3, annually. This was proclaimed by the United Nations General Assembly in 1992. This is observed to promote an understanding of disability issues and mobilise support for the dignity, rights and well-being of persons with disabilities. This also increases awareness of the importance of empowering and integrating persons with disabilities in every aspect of political, social, economic and cultural life.
Q. It is said that there are around 21 types of disabilities that affect a person’s normal physical and mental abilities. Which of them is most common 1) globally, 2) in Sri Lanka?
A. Physical disability is the most common type globally and in Sri Lanka. Physical disability results in the person having a reduced ability, or inability, to perform body movements such as walking, moving hands and arms, sitting and standing as well as controlling the muscles. It is not about the physical condition itself but how it impacts daily life, such as the ability to carry out work activities. A person may be born with a physical disability or acquire it in life due to an accident, injury, illness or as a side effect of a medical condition.
Q. How are they caused? By accidents resulting in spinal cord injury? Diseases? Stroke? Trauma to the brain? Neurological disorders like Alzheimer’s disease? Explain in detail.
A. Disability is diverse and there are many causes such as heredity, birth defects, lack of care during pregnancy and childbirth, congenital diseases, malnutrition, natural disasters, traffic accidents, war, violence, work-related accidents and illnesses, sports accidents, communicable and non-communicable diseases, drugs, alcohol, smoking, toxic chemicals and mental health problems. Low birth weight, premature birth, multiple birth, and infections during pregnancy are associated with an increased risk for many developmental disabilities. Poverty is one of the biggest causes of disability. Poor people are most vulnerable to disability because they are forced to live and work in unsafe environments with poor sanitation, crowded living conditions and with little access to education, clean water or sufficient good food.
Q. Age/gender-wise who are those most at risk to develop these disabilities? Young? Elderly? Why?
A. Over 46 percent of older persons, those aged 60 and over have some form of disability. The contributing risk factors are age-related diseases, impairments, functional limitations, poor coping strategies, sedentary lifestyles and other unhealthy behaviours, as well as social and environmental obstacles.
The World Health Survey estimates give a female prevalence of disability nearly 60 percent higher than that of males. The number of differently-abled women are higher than those of disabled men, that is, 3/4 of differently-abled persons in lower and middle income countries. Greater prevalence of nonfatal disabling conditions, including fractures, osteoporosis, back problems, osteoarthritis and depression, contribute substantially to greater disability and a diminished quality of life among aging women compared with men.
Q. Cerebral Palsy – is it a disability that cannot be cured? Why?
A. Cerebral Palsy (CP) is the most common physical disability in children and it affects movement and posture. It is a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is still developing. There is no single cause for Cerebral Palsy and at present, no new scientifically proven method has been found to totally prevent or cure cerebral palsy.
Q. How do you identify a child having CP? What are the signs?
A. The most common early signs of cerebral palsy are developmental delays in reaching key growth milestones, such as rolling over, crawling, sitting, and walking. In lifting or carrying, there can be variations in muscle tone, such as being either too stiff or too floppy.
Sucking and feeding difficulties, difficulty in holding the head upright, excessive crying, lack of attention, favouring one hand over the other or stiffness on the other side are the other common signs.
Q. Can they be managed better if detected early? How?
A. Cerebral palsy or high-risk of cerebral palsy can now be detected accurately and early using a combination of standardised assessment tools like General Movements Assessment and HINE. Early detection enables timely early intervention when the greatest gains are possible from neuroplasticity.
It hastens the onset of therapy and treatment, ultimately minimising resultant impairments, preserving cognitive function, and allowing time for the child and the parents to adjust. Late diagnosis means some infants do not receive early intervention when they would benefit most. It is not a good practice to offer conservative wait and see monitoring, when clear clinical diagnostic indicators exist.
Q. Who are most at risk of developing this condition? Why?
A. Premature babies, multiple births, infection during pregnancy, mothers with medical conditions, complicated deliveries, severe jaundice and seizures in infants are some of the factors that may increase a baby’s risk of being born with cerebral palsy.
Q. Does it require a multi-team effort? If so, who comprises this team?
A. A multi-disciplinary team approach is now considered the key in the success and of fundamental importance in the rehabilitation of children with CP, which is a complex process aiming at ensuring children and their families the best possible quality of life.
By acting directly and indirectly, CP rehabilitation considers the individual under all physical, mental, emotional, communicative ability and involves their familial, social, and environmental context too. The MDT team includes Paediatrician, Neurologist, Physiotherapist, Speech and Language therapist, Occupational therapist, Special Education teacher and Psychologist.
Q. As a Chartered Physiotherapist, what intervention role do Physiotherapists play in helping to rehabilitate children with severe disabilities?
A. The Physiotherapist plays a very important role as a member of the MDT team in the rehabilitation of children and we focus on function, movement, and optimal use of the child’s potential, and use physical approaches to promote, maintain and restore physical, psychological and social well-being within all environments of the child including home, school, recreation, and community environments. We also work on their gross motor skills, functional mobility in the management for the motor deficits, positioning, sitting, transition from sitting to standing, walking with or without assistive devices and or using wheelchair.
Q. Are parents allowed to be part of this rehabilitation process? If so, what are their specific roles?
A. A family-centered or focused approach is considered the best practice in Paediatric rehabilitation. This approach recognises that each family is unique, is the constant in a child’s life, and that parents are the experts on a child’s abilities and needs. As the parent of a child with CP, I have always emphasised the importance of this approach and have seen better progress with these children when the parents are part of the rehabilitation process.
Q. Tell us about the disability App launched by the MJF Foundation in October and how families with these children can benefit by this new service?
A. During the Covid-19 lockdown, we introduced tele-therapy and education services for the students at our centres and observing its benefit, we decided to expand this service to children in all districts of Sri Lanka. The Disability Screening app aims to share knowledge, therapies and services for people with disability, especially, children in regions 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 guidance from the 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 our readers caring for a differently-abled child?
A. Ninety percent of children with disabilities in developing countries do not attend school. Education is a fundamental right of children. Education gives the children with disabilities skills to allow them to become positive role models and join the employment market, thereby helping to prevent poverty. Parents should believe in the value and the importance of educating their children.