National program for children with special needs

Fathima RAZIK

For over 25 years the National Child Health Program under Health Ministry has been focusing on identifying children with developmental problems using Public Health Midwives (PHM) who have been monitoring the milestones of children. This method has to some extent helped to identify children who were found to be slow in achieving targeted milestones in the process of growing up and who were thereafter referred to the area Medical Officer of Health (MOH) and through the MOH to a paediatrician.

This process however was found to be wanting in many respects - vis-à-vis - by adopting more effective and efficient ways of not only identifying these children who present developmental problems but also ensuring that they are thereafter treated in the best possible manner so as to be a part of society while at the same time coping with their problems.

Towards this end a whole new program has been planned, and would be implemented to address the issues that arise from the behavioural patterns of these children.

Specialized medical personnel and supportive staff - from paediatricians, child psychiatrists, psychiatrists, occupational therapists, physiotherapists, speech therapists, amongst others, are a vital component of this program. Also important are the parents of these special children and nursery/school teachers, friends, relatives and others' children generally come into contact with.

National Program Manager Dr. Neil Thalagala of the Family Health Bureau said that a national program is in place to address this problem which focuses on training those who would be involved in the day-to-day lives of these children. This is a gigantic task considering that one has to be aware of behavioural patterns of children so as to identify those who may not fall into the general pattern, and instead, act different to their peers - either in school or at any other place. As a result, the Family Health Bureau of Healthcare and Nutrition Ministry in collaboration with the Non-formal and Special Education Unit of Education Ministry and with the available resources, has launched on a timely program to train not just health workers but also parents and teachers who deal with children everyday.

At present there appears to be a lacuna in the services available for these children whose needs are extensive. A large number of children with learning disorders, developmental disorders (e.g. autism) and behavioural disorders who are a part of Sri Lanka's society have not had the attention and assistance needed to help them integrate with society. The needs therefore encompass (a) home, community and hospital based health care, (b) special education, (c) psychosocial services, (d) nutritional interventions, (e) providing necessary equipment, (f) vocational training and (g) family support - a sine qua non to ensure that the program is carried out successfully.

The program focuses on the following key areas - assessment and surveillance of burden of disease and deaths related to special needs among children, establishing a screening system to ensure early identification, designing and integration of holistic care through a package covering health, education, social, financial and the rights of children with special needs, networking with relevant partners to have a coordinated response for a successful outcome, creating a supporting environment which includes community mobilization and generating context specific knowledge on such children.

This is bound to achieve the overall goal which is to promote and ensure the well-being of children with special needs in Sri Lanka.

The process without doubt would be long and tedious, but well worth the time, energy and money spent. For example, early identification of such children at different levels - at home, pre-school, school, health and other institutions would make timely intervention available, medically and through other support systems.

This would include care at home, primary, secondary and tertiary care institutions and through the pre-school and school through standardized guidelines for the management of these children while the capacity of health workers in their area of responsibility would be empowered. Similarly, pre-school and school teachers would be trained on how to identify the behavioural patterns of these children which in turn would help to care for and monitor the progress of such children. Parents too would be empowered to provide special care and psychosocial support since this condition in a child would last for life.

Outside agencies - law enforcement for example, among other institutions would be co-opted to be a part of the program as their roles in the non-health and non-educational sectors are essential through relevant training and guidance to perform in a manner conducive towards fostering the special needs of these children.

While the responsibility of overseeing the national program would rest on a national level steering committee to ensure the progress of the national thrust, advocacy and awareness on the issues in question have not been overlooked.

The social, economic and health costs to the country in this regard would be systematically assessed. And through such assessments the costs borne by the State could be reduced through advocacy and awareness among the public.

Certain aspects of special needs are known to be culture dependant. Research would be done to address these dependencies through homegrown methods.

All these areas of focus would be a part of the national child health program and initiated after a pilot test conducted among a reasonable number of children with special needs in rural and urban settings within the local health system, the resources available and the existing health-related practices in the community so as to arrive at the best formula to address the issues at hand.

A Primary Child Guidance Centre (PCGC) would be established in every MOH area under the serving Medical Officer of Health and a Secondary Child Guidance Centre would be established in a district under a paediatrician. This centre would provide specialist care and management of the child referred to by PCGC. The tertiary level care would be provided by central level organizations - the Lady Ridgeway Hospital for Children (Colombo), supported by the Family Health Bureau, for a start.

This program on the management of children with special needs is unique in the region and the initiative and hard work of a number of professionals is laudable.

Children - the future assets of any country need to be nurtured and cared for, especially those whose needs are special. They are 'special' through no fault of their own, and it is indeed sad that they have to live with a condition that they have not brought upon themselves.

Mother Nature works in mysterious ways - and none can fault nature either. Therefore this national program needs to be supported by all nationals living in Sri Lanka, in whatever way possible.

Any assistance from the public that would proactively facilitate this program would be welcomed by the medical professionals. Please call the telephone number (011) 2 68 69 76 during working hours and confirm your participation.