DISTRICT CEREBRAL PALSY HOME
Cerebral palsy home in each district of India will bring together parents and those serving cerebral palsy children, for the better development and rehabilitation by joint efforts. The House will provide multidisciplinary management under one roof. It will also be a meeting place of "Family" and a place for future planning and research. This will be a platform for the society and the nation to notice them. They will be able to say "See we have ability, in our disability. We can also contribute to the society and be useful citizens."
The presence of such Homes will bring awareness about cerebral palsy and this would help in early diagnosis and intervention.
In India, perhaps, there are about 25, 00, 000 cerebral palsy children as compared to only 7,00,000 in USA. On an average, if one center caters to 250 children, there should have been at least 10,000 rehabilitation centers. Surprisingly, most of the capital cities of the country also do not have such centers. Magnitude of the problem is vast. Parents have to take the disabled child to different places for their problems. The centers are located in different cities. In fact, the management of cerebral palsy children takes most of the time of a family. In this process, the normal children suffer from lack of attention and guidance. The whole family suffers from psychosocial problems as well. In this way around 10 million people in India directly get affected because of a family member's disorders.
In India, the total number of various therapists like physical, occupational, speech etc. is extremely low. Less number of therapists are trained and over that many therapists migrate abroad. Ultimately, India suffers from lack of trained therapists.
What is the solution when rehabilitation centers are very few, therapists are not available, number of cerebral palsy children is very high and awareness about the problem is meager? The solution is development of cerebral palsy homes. There should be at least one in each district of the country, where training of needy people, the parents of cerebral palsy children will be carried out. This is likely to solve the problem to some extent till sufficient numbers of therapists are trained and they stay in their mother country. A regular timely professional guidance to parents according to the stage of development of the child will be necessary. In the group of many children the therapist will be able to guide the parents, to teach other parents. The therapy will be the same which he / she has carried out for his / her child. The decision about the kind of therapy will be taken by the therapist after assessment of the child.
Some skilled guidance for the parent is always better than leaving the child to abnormal development. At present only a few cerebral palsy children are able to get proper therapy. Even for them the therapy is not started on the right time i.e., within few months of insult to brain. Geographical constraint is another major factor, hindering parents to go to places where therapy may be possible. Answer to all these problems in the present circumstances lies in the District Cerebral Palsy Homes. Presence of such centers will also bring awareness about cerebral palsy in the district.
First of all each district should make......(Name of District) Family of cerebral palsy. All the parents of cerebral palsy children, therapists, doctors who can treat cerebral palsy, social workers, philanthropists etc. can join the family. The Family can represent to the Collector, Mayor and other administrators for land and construction of building. Jointly with the help of the Government and the non-governmental sources this work can be accomplished. Temporary arrangement can also be thought of. The Family can take a therapy room / building on rent. The family can approach organizations and rehabilitating centers working for such children to conduct a camp in their district. In the camp, diagnosis can be made and therapy initiated. Subsequently, therapists can be requested to regularly visit the home and guide the parents. The parents with good potential to learn the therapy can be guided to teach the same to other parents. However, the decision about the kind of therapy to be carried out should be decided by the therapists. Video recording of the various therapies and their display will surely be of great benefit in understanding and propagating the therapy.
An interaction among parents from the same geographical area will help each one of them. Various problems can be understood well and can be mutually solved. The greatest fear of parents " What will happen to the child after us" can be solved by adopting cerebral palsy children. A promotion of such psychology and its practice will bring great psychological relief. A facility to keep such children in the home for sometime under the guidance of some parents can also be thought of.
Parents who face similar kind of problems can evolve a better strategy than the people who are not exposed to the problem first hand. They can combat the problem more efficiently. Therefore, district cerebral palsy families can become a strong body and improve the condition of their children more efficiently.
It is better to remain as a non-governmental organization and help the government for the cause. Instability and insecurity is the greatest threat which never allows maintenance or progress of any organization dealing with disabled people. The stability can be achieved by giving equal opportunity to the members of the family to great a extent.
IFCP head office has addresses of thousands of cerebral palsy families. We are coming out with the Indian Directory of Cerebral Palsy. This directory will have addresses of people, professionals and non-professionals, and the organizations serving for the cause of cerebral palsy. The directory will help the families to start a movement for making district cerebral palsy Family and Home. Those interested in inclusion of name and purchase of the directory may write to us.
We invite discussion on this topic from readers. Your suggestions and criticism will be taken in a positive stride.