CHENNAI: Doctors must take families on board when it comes to treating disabilities, said Dr Vetta Vedanarayanan, director, Neuromuscular Medicine division at the University of Mississippi Medical Centre in the US. Speaking at 12th MV Arunachalam Endowment Oration, here recently, he pointed out that the responsibility of providing care for differently-abled children is with the parents. “Family is the main care provider. So, the doctors should take the family into considerationwhile taking medical care forward,” he said.
He pointed out that while there were several strategies for rehabilitation of cerebral palsy, these should not have been done in a ‘one size fits all’ manner. The family, the disability level of the child and the interests of the differently-abled must be taken on board before deciding on the rehabilitation,” he said.
“Exercises and other rehabilitation methods cannot be continued if the child is not feeling comfortable,” he said.
Speaking about the impact of the family in providing care to the children with disability, he said that the traditional joint family system was superior to that of the nuclear system in dealing with conditions like cerebral palsy.
“In a joint family system, healthy relatives can step in when it comes to the care of the child, relieving the parents’ responsibility,” he said.
“With more families moving towards the nuclear system, there’s a need for more systems in place. The services of special schools, day care centres and home health services can help a family to provide support to their differently-abled kids. A weekly day off for a parent to perform the daily chores or a few hours of free time would help them rejuvenate. This will make a huge difference,” he said.
Every child with special needs should be placed in neighbourhood schools with proper support services, transportation and escort facilities. Schools should equip themselves for scientific identification of disabilities in children. To facilitate this, it would be necessary to organise school-readiness programmes like training in mobility, Braille, sign language and postural training, etc.
Multiple sclerosis, muscular dystrophy, mental illness, low vision, and locomotor disability increase as children grow, resulting in enormous medical cost.
The causes for neurological disorders are highly prevalent in cases of teen or unhealthy pregnancy, he said. In the US, around 7,64,000 children and adults currently have cerebral palsy and this is the second biggest cause for disability after polio.
Talking about the economic burden of childhood neurological disability, Vedanarayanan said that the direct medical cost accounted for only about 20 per cent of the cost of disability.
Over 80 per cent of the cost is indirect. They relate to productivity loss due to inability to work, limitation in the amount or type of work, premature mortality and non-medical costs for special education, home and automobile modifications, among others.
“It is important to make sure that any disability is treated at the earliest and the people with the disability are able to lead a productive life,” he said.