The recent unfortunate occurrence related to a 25-year-old youth with special needs who had ended his life after his mother, his only guardian, was admitted to the hospital after detecting symptoms for Covid-19 has brought public attention to a much overdue cause for concern.
The neighbours blame the authorities – the public health inspector (PHI) – for the alleged inconsiderate nature and lack of empathy.
Special needs
The umbrella of special needs describes individuals who require assistance for disabilities that may be medical, mental, or psychological, ranging from the physical such as muscular dystrophy, multiple sclerosis, chronic asthma, epilepsy; developmental conditions like cerebral palsy, down syndrome, autism, dyslexia; and processing disorders to behavioural and psychosocial cases such as attention deficit hyperactivity disorder (ADHD), bipolar disorder, and sensory impairments including the blind, visually impaired, the deaf, the hearing impaired, etc.
“Many of these are lifelong conditions. The target is to get them into a highly functional level despite their circumstances,” explained Family Health Bureau (FHB) Child Development and Special Needs Unit National Programme Manager Dr. Asiri Hewamalage.
Disabled people themselves are presently aware of their condition, but they know they have the same rights and functional capability as any other person. What they need is certain environmental modifications for functionality so that they could contribute to the country, Dr. Hewamalage said.
Within the scope of the media, especially in the West, the terms “special needs” and even “differently abled” are being utilised in an attempt of progressiveness.
University of Kelaniya Department of Disability Studies Head and consultant paediatrician Prof. Samanmali Sumanasena was enthusiastic to elaborate further into the very taxonomy of the raised concern.
“The term ‘special needs’ is actually not recommended by the World Health Organisation (WHO). Their recommended reference is ‘people with disabilities’. These people do not think they are particularly ‘special’, but rather a part of the ordinary world. This special consideration to the terminology is put out of respect to them.”
The professor explained how “disabled” simply means that when a person cannot carry out certain activities that limits participation in particular social circumstances.
Taking into consideration a child who is unable to write, in a situation where he/she is not allowed schooling, the disability exists due to the prevention of participation. However, a different mode of writing and schooling opportunity would dismiss the disability.
“The beauty of the word is that it is dynamic. ‘Disabled’ is a situation which is contextual, modifiable, and impermanent. Social integration of these individuals would be enabling them rather than disabling them.”
Aid in early child development crucial
Within the spectrum, early detection can help bring individuals with certain conditions to a highly functional level, especially in intellectual disabilities such as autism, ADHD, learning disabilities, and Down’s syndrome.
Noting that the Child Development and Special Needs Unit of the FHB is a relatively new division, Dr. Hewamalage explained the role of the FHB in this aspect as the focal point in handling maternal and child care in Sri Lanka.
“Optimum stimulation must be provided for all children upon birth. It is internationally accepted that the first three years of life are most crucial for brain development. Whatever extra stimulation given in the adult stage is not an apt equivalent to the role early brain development plays as it is the basal foundation,” stated Dr. Hewamalage.
Dr. Hewamalage duly explained the general involvement in early child development by the public health midwife (PHM) system in Sri Lanka in collaboration with the PHI and medical officer of health (MOH).
According to Dr. Hewamalage, the “Early Detection and Intervention Programme for Children with Disabilities” was started in early August 2020. In the programme, if general inspections reveal that considerable complications are observed, the child is directed to a community paediatrician who is well equipped on developmental disabilities and special needs. Therefore, a proper assessment will be made with a multidisciplinary team composed of the paediatrician, speech therapist, occupational therapist, medical officer, and nursing officer. Based on the child’s disability, an individualised plan will be prepared.
Each child under the care of a PHM is supervised between specific time periods which are identified as immunisation points. (i.e. two/six/nine months, one year, 18/24/36/48 months, and 60 months). The screening is accordingly recorded in the Child Health Development Record. This project which kick-started within the Colombo District was said to be a success till the resurgence of Covid-19.
Education
In the UK, special needs usually refer to special needs within an educational context, also referred to as special educational needs (SEN) or special educational needs and disabilities (SEND).
SEN refers to learners with learning, physical, and developmental disabilities; behavioral, emotional, and communication disorders; and learning deficiencies in comparison to the abilities of most children their age. They may have problems with schoolwork, communication, and/or behaviour.
Traditionally, children requiring SEN are segregated into separate learning environments. However, as of late, integrated education systems including such children are encouraged.
However, it is yet a common phenomenon that children with disabilities are discouraged from schooling. Children with learning disabilities in Sri Lanka are still largely excluded from mainstream education and experience high school dropout rates according to the United Nations Children’s Fund (UNICEF), even with a respectable figure of overall 98% primary school enrolment rate and having ratified the UN Convention on the Rights of Persons with Disabilities which promise equal opportunity to education.
UNICEF’s 2016 “Learning Disabilities in Sri Lanka” report shows that 23.5% of children aged five to 14 with disabilities are excluded from mainstream education and that participation reduces with age, for those who engage in mainstream education. Around 55.4% of the disabled population aged 15-19 and 86% aged 20-24 are not engaged in any educational activity or vocational training.
The lack of skilled teachers, lack of appropriate infrastructure facilities in schools, and limited scope in curricula and overall quality of education prove themselves to be the main challenges for such individuals and social stigma complements it.
Hardship fuelled by Covid-19
The biggest challenge for disabled adults is the lack of opportunity for socialising and employment. For individuals who are under long-term medication, lack of access to healthcare can aggravate the situation, especially for those with physical and psychiatric disabilities. For people with mental health problems, acute disruption of support groups and vocational training becomes an issue.
“With the current pandemic situation, we are pushed towards a situation in which we have to prioritise. Survival comes first. Things like disability screening are not survival games, but focus on improving the quality of life,” explained Dr. Hewamalage.
The long-run solution of the screening programme which started earlier this year and was halted is a prime example. Transportation of children to clinics itself can be a threat to survival, as these children are highly vulnerable to Covid-19 due to underlying pathologies, compromised immunity, and nutrition levels. There is also the possibility of being unable to express difficulties which can result in timely infection detection. In a case where such an individual is hospitalised after infection, little to no special attention is paid due to limitations in monitoring.
The disruption in practice of routines as a result of curfews negatively affects the anxiety among the general public itself. When people with mental disabilities in particular are unable to aptly articulate themselves, it could lead to aggression, rage, depression, and/or even suicidal tendencies. This is due to their already restricted lives that are further intensified, elaborated Prof. Sumanasena.
Another major concern is the disabled individuals under the guardianship of single caregivers. The case like the Homagama incident is a prime example. The abandoned individual suddenly becomes an immense social responsibility and when apt systems are not in place, it even develops into a “societal burden”.
Curbing Covid’s hardships for the disabled
The Homagama incident is merely an eyeopener to the sizeable neglect disabled individuals in Sri Lanka face. It is apparent that bringing forth prompt solutions is quintessential to safeguard a noteworthy portion of our society.
Dr. Hewamalage affirmed that by doing so, we’re not actually helping them – it’s simply what the Government should do in their best interest as appropriate for the long run.
“The highest possible functionality in human capital is important to any country, specifically to a developing country such a Sri Lanka. The aim is to have highly productive citizens.”
Physically removing these individuals from homes is not ideal as a lot of anxiety and reactions are invoked accordingly. For such people, chemical releases like adrenaline in the brain can be destructive Consultant paediatrician Prof. Samanmali Sumanasena
The first step is to tackle the panic situation in the country. All should be responsible, alert, and not anxious. We should look into how we can also serve better while safeguarding. There has to be eventual individualisation to a certain extent to look into matters on a case-by-case basis, rather than completely disregarding humanity over the immediate need.
For example, asymptomatic cases can be done on a home-care basis like in many developed countries. Doctors in the community could plan for abandoned disabled children to be looked after if the caregiver is absent. A common suggestion is having state-run institutions in place for the care of the disabled without a caregiver.
“Physically removing these individuals from homes is not ideal as a lot of anxiety and reactions are invoked accordingly. For such people, chemical releases like adrenaline in the brain can be destructive. As a professional in the field and as per general guidelines in dealing with children with disabilities, I’m completely against institutionalisation,” explained Prof. Sumanasena.
Prof. Sumanasena further even discouraged institutions such as orphanages in the developed world, emphasising the need for loving and accommodating home environments in their own communities.
“Coronavirus is serious, but the work we do is a slow and steady process. If the slightest stress factor is added to these cases, all the miles we have walked can reverse within seconds,” added Prof. Sumanasena.
Presently, it is apparent that the service sector of Sri Lanka is not adequately equipped nor informed on the rights and needs of disabled persons, evidenced by the brutal police assault to Thariq Ahamed during the first wave of Covid-19 and alleged conduct of the PHIs related to the Homagama incident. “As a health professional, I have a lot of regard for the dedicated work of public health professionals who work out of their hours and beyond their mandate. They have been given instructions which should be followed or else there would again be consequences and backlash,” expressed Prof. Sumanasena.
Prof. Sumanasena further said that PHIs are not the highest responsible body within the public health community. A holistic approach and due training for these officials on how to manoeuvre these situations are important, but it is in the hands of the top policymakers to account for true change.
“Taking the Covid scenario itself, policymakers have not identified people with disabilities under its priority-based service. In general, disabled individuals are below in the agenda of policymakers. There has to be a huge shift in paradigm and very specific guidelines have to be brought forth by the governing lawmakers to safeguard these individuals.”
Sri Lankan policies concerning the disabled are more about contact raising and little to none about them as a vulnerable group. There is a lot of discrimination and exploitation that happen behind the scenes.
The majority of people with disabilities worldwide are also economically challenged and less educated. Making services more accessible for them is quintessential, especially during the pandemic. Telehealth used in the health sector is such an example. Although it does not cover all existing drawbacks, it is a step forward in the right direction. Furthermore, the provision of internet facilities for the community-based services emergency service provision sector is recommended.
Moreover, public awareness should be on the forefront. Social media platforms and the involvement of philanthropists and celebrities advocating for such causes can make a change. Institutions like the Central Bank and World Bank can also aid immensely in the provision of funds.
As per the UN Sustainable Development Goals (SDGs) and guidelines by renowned international organisations, the needs of the marginalised, disabled groups are identified.
“In Sri Lanka, it needs to trickle down to the level of our policymakers,” concluded Prof. Sumanasena.
Activism in focus
Thareendra Liyanage, Founder of One Stage for All, an NGO that primarily engages in raising awareness on Down’s syndrome and autism in Sri Lanka, enlightened the role activism can play in the lives of these disabled individuals. The organisation has been conducting research for the past two years, calculating in numbers and assessing the public reaction to these conditions.
“There is an increasing rate of autism in Sri Lanka. People are scared of Down’s syndrome children. Our fundamental goal is to make them more accepted in society,” Liyanage said.
Liyanage shared that in Colombo, most of the Down’s syndrome children and adults are a part of some centre or training unit. In outstations, not every family has that privilege. In this backdrop, One Stage for All strives to break them out of their cages and make them feel accepted and find their place in society.
“Once when I was visiting Matara, there was a kid of 21 with Down’s syndrome and he has never touched grass in his life. He never went outside because his parents were mentally tortured for giving birth to such a child. We took him to the beach and started playing. It’s like he lived an entire life in the few moments he spent with us,” Liyanage reminisced.
The current pandemic situation has been torturous for them, Liyanage said, adding: “Some parents call us and cry. They tell us that their child’s condition is worsening by staying cooped up inside. Sometimes I’m on the line for two to three hours with the kids who tell me their worries. We want more people to see, hear, and help us.”
