Beyond dreams: LRH’s vision for special children takes flight
Hot on the heels of the promise, several meetings have followed and there is subdued excitement that what the passionate team at the premier Lady Ridgeway Hospital (LRH), Colombo, has dreamed and envisioned for special children, is slowly and surely becoming a reality.
The meetings have followed the budgetary allocation of Rs. 200 million for the establishment of a state-of-the-art national ‘Centre for Autism and Neuro Development’ to provide comprehensive care under one roof, with the tagline aptly being ‘Beyond dreams’.
The little ones engrossed in drawing and other activities. Pic by M.A. Pushpa Kumara
A smart little boy of around four years rushes into the room of Consultant Psychiatrist Dr. Swarna Wijetunge in LRH’s Ward 23, with his grandmother in pursuit, does several circles and keeps repeating the questions posed by her gently without answering them.
We have just been discussing how Ward 23 comes up with a diagnosis and then intervenes, manages and treats children with behavioural and emotional development disorders, all under the care of a multi-disciplinary team and how they hope to move forward now that the government has taken under its wing these special babies, children and adolescents.
Dr. Wijetunge, whose special interest in child and adolescent psychiatry has placed her as the team head, details what the dedicated interventional centre for Autism Spectrum Disorder (ASD) would do. While implementing evidence-based interventions, it aims to detect and diagnose these children early for multi-disciplinary interventions, with progress monitoring and for essential multi-sectoral collaboration which will include education, probation, child protection, social services and vocational training.
The centre also hopes to conduct parental training and set up support networks; foster financial aid and public-private partnerships; collaborate with the community for inclusive activities; and develop online resources and training programmes.
The benefits of the centre would be manifold – including reduced waiting lists for diagnosis; better crisis intervention for families; use of telemedicine for accessibility; and collaborations across Southeast Asia.
Dr. Wijetunge explains how children are sent from all over the country to the LRH. The sources include self-referrals by parents who have heard of the work done here and from LRH’s other wards, other hospitals/clinics, schools and courts.
The team (from left – sitting): Dr. Anuradha Herath, Dr. Swarna Wijetunge, Dr. G. Wijesuriya, Dr. Santhusitha Senapathi, Dr. Pyara Ratnayake and Dr. Jayatri Jagoda and (from left – standing) Kasuni Chandima, Dr. Athula Wijesundara, Tharika Peris, Rukma Edirisinghe, Malka Jayathilake and T.H Rasika Samanmalee
While the LRH manages children in the age group 0-14 years, Dr. Wijetunge’s team also holds a weekly clinic for adolescents at Colombo’s National Hospital of Sri Lanka (NHSL) for those between 14-19 years. The LRH also has a six-bed ward for those needing admission.
At the LRH, the child mental health service caters to around 2,000 new patients annually, while diagnosing around 500 children with ASD including autism; specific development delays such as speech and motor coordination; specific learning disabilities such as dyslexia; and intellectual disabilities.
Looking back, Dr. Wijetunge says that when the COVID-19 pandemic hit and parents with special children were unable to access services, the ‘Autism Steering Committee’ was born under the guidance of LRH Director Dr. G. Wijesuriya, Consultant Paediatric Neurologist Dr. Piyara Ratnayake and herself to deliver evidence-based quality care.
“We needed to ensure seamless and holistic management and care,” she says, citing instances where after diagnosis, children would be sent to the therapist but the parents would drop out of the system disrupting the continuity of care. They would reappear only in 5-6 years affecting the progression of the child.
The need, therefore, was to revamp and strengthen the system to prevent children falling off the grid and losing valuable time. The team was also expanded to encompass all disciplines and training followed soon after – online by an Indian team with the help of the Rotary Club and forging links with Australia’s Brisbane Autism Project, setting in motion a ‘goal-setting’ pathway.
The four goals were: a monthly training programme for parents; meetings of the multi-disciplinary team; launching a WhatsApp group for parents to ward off parent burnout; and working towards a one-stop-centre for the team.
This team comprises:
- Medical – consultant child and adolescent psychiatrists, a paediatric neurologist, rheumatologists, paediatricians and other specialists including an ENT surgeon, an eye surgeon and geneticist.
- Allied health – occupational therapists, speech and language therapists, a psychologist, psychiatry social workers and community psychiatry nurses and educators.
According to Dr. Wijetunge the diagnosis of a problem may come at different ages – speech delays at an early age of 1½-2 years and dyslexia at around 6-7 years when going to school.
“Some development disorders will also be linked to other issues,” she reiterates, underscoring the vital importance of early screening and early intervention. “The sooner, the better.”
The value of early diagnosis and early intervention is stressed by many parents among whom are a mother whose son was diagnosed with autism at two years, a father whose son was found to be autistic at 1½ years and a mother with twins diagnosed at two years.
Now with her son being five years old, the mother says that the hard work has paid off. He is in preschool, handles his daily activities and even initiates conversations with others, she tells us with pride, while the father whose little boy is now three years is over the moon for he interacts well with his peers, participates in family activities and is more independent.
For the mother of twins, LRH has been a beacon of hope and progress……“The staff didn’t just give us advice and leave us to figure it out on our own. They were committed to working with us. We had regular check-ins and whenever we needed more support, we could reach out directly.” Her twins now six years old are 75% independent, understand instructions, can work well in school and engage with others. Life has changed for the better for all of them.
Focusing on autism, Dr. Wijetunge says that even though the exact cause is unknown, with triggers being attributed to epi-genetic and environmental factors, what is known is that there seems to be an increasing trend across the world.
The global prevalence of ASD, a lifelong neurodevelopmental disorder, is 1 in 44 children and the Sri Lankan prevalence found to be 1 in 93 in a 2009 study in a semi-urban setting, done by senior Consultant Child Psychiatrist Prof. Hemamali Perera.
Looking around for space at the busy LRH for the centre, the team had zeroed-in on the rooftop (4th floor) above the New Auditorium, without spoiling the façade or getting into others’ space.
“All including special children are precious. There should be no stigma, discrimination or sympathy. What they need is empathy. We at LRH are committed to being by their side until they get their rightful place in society, with dignity,” says Dr. Wijetunge.
Starting from scratch, the ‘Royal College Group of 81 Walkers’ who wanted to chip in, meanwhile, held a wildlife photography exhibition in November last year to raise over Rs. 6m. Now has come the government allocation, which has made ‘Beyond dreams’, very much a dream come true!
| Budgetary allocation a great boon | |
| “We have the manpower and the facilities and now we have got immense support from the political end,” says LRH Director Dr. G. Wijesuriya who is all smiles over the allocation of Rs. 200m in the Budget announced by President Anura Kumara Dissanayake. Underscoring that this allocation for neurodevelopment disorders including autism which are seeing an increasing trend is timely, he says that they would make “maximum” use of these funds. Part of these funds would also be used for the purchase of a vital neuro-surgical microscope in the management of epilepsy. This will help look into neurology and neuro-surgical care of children. Dr. Wijesuriya requests anyone who wishes to support these projects to please call the Director’s Office on: 011-2693711, ext 307 to get more information.
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