Establish appropriate infrastructure for a residential facility as long term as well as short term shelter and operate the same to provide holistic, diagnostic and vocational services to Persons with Disabilities even in absence of their parents and to build capacity for the mentally challenged persons to lead an integrated life in society and to create an enabling environment through reduction of stigma and discrimination, early interventions, rights based approach.
Establish appropriate infrastructure for a residential facility as long term as well as short term shelter and operate the same to provide holistic, diagnostic and vocational services to Persons with Disabilities even in absence of their parents and to build capacity for the mentally challenged persons to lead an integrated life in society and to create an enabling environment through reduction of stigma and discrimination, early interventions, rights based approach.
Present Probelems
Magnitude of the Problem - Indian Scenario
Lack of Awareness
Lack of awareness is rampant in India.99% common people do not know the meaning and implications of all most all of these disorders. Resource for awareness is very limited. Health specialists also are not so equipped with all information related to these disorders. Thus detection and training in most cases get delayed.
Survey conducted recently in Kolkata city shows that 70% of General Physicians do not know the proper meaning and implications of Autism. Even clinical psychologists and psychiatrist, social worker and special educators also don’t know the appropriate meaning and implications of autism.
Number of undiagnosed Challenged Persons
Many sufferers of these disorders could not be identified till date due to lack of awareness among common people and medical fraternity. It is feared that existence of number of undetected persons suffering from these disorders may be equal or even more.
Almost No Preventive Measures!
Lack of awareness among majority of would-be parents is leading to almost nil preventive measures resulting probability of rate of unhindered/unrestricted growth in the birth rate of disabled children.
Number of Mentally Challenged Persons as per Census 2001
In view of above state of awareness, no census can find out existing of actual number of population of disabled persons in India unless parents fully co-operate. Though Census 2001 and Survey by NSSO in 2002 enumerate that the number of disabled population to total population is within 2 %. Whereas in developed countries the figures hover above 7 percent to 12 percent of the population. Thus it is believed that the data published by Census and Survey are not actual and the actual figure will be more than 2 to 3 times of the published figures.
As per census 2001, statistics of challenged persons in West Bengal state of India are:
| Total | Urban | Rural | |
| Mentally Disabled Population : | 270842 | 181981 | 88861 |
| Population in Seeing : | 862073 | 610221 | 251852 |
| Disabled Population in Speech : | 170022 | 132912 | 37110 |
| Disabled Population in Hearing : | 131579 | 109457 | 22122 |
| Disabled Population in Movement : | 412658 | 319682 | 92976 |
| Grand Total : | 18,47,174 | 13,54,253 | 4,92,921 |
Future growth of this population
The reasons for the above-referred disorders are not fully found out resulting the preventive measures ineffective. Even after availing all available most modern medical precautions and preventive measures the incidences of birth of autistic, CP and MR babies, in most developed countries like USA, UK, Canada etc. are on the rise. Hence it is very unlikely that the process of growth of this population can be stopped in near future in India.
Stand-alone parents in absence of Joint Family System
Joint family system had been there and had given respite to these parents as other family members could have played the role of caregiver in absence of the parents Now joint family is not in vogue. But in modern solitary family system, parents are the only available caregivers to their mentally challenged children. They have to forget their general pleasure and aspiration for the sake their child. One of the parents must accompany the child always. As the age grows, it becomes impossible for aged parents to manage the grown-up mentally challenged.
Single parent with challenged child
At present many single parents are anxiously counting their days as to who will help them accepting the guardianship of their challenged sons/daughters for future protection of their lives in their absence.
Present status of mentally challenged in absence of their parents
After death of parents, many parent-less profoundly / severely challenged Some persons die uncared, Some are lost in the crowd, Some persons are kept in Old-age Home in uncongenial for their lives.Sometimes death of these people is prayed for, for ending their increased suffering of living in absence of their parents. In many cases, people surrounding these parentless challenged people treat them as burden and earnestly desire to get rid of them.
Superstition & Stigma
In India, due to superstition (a challenged baby is a curse of the God/Goddess!), stigma, vague status consciousness, many parents want to disown their own challenged children and thus they do not disclose the very existence of challenged children in their family making the lives these challenged children hell and miserable. Some fathers (?) become so heartless inhuman that they blame their better-halves for giving birth to challenged children and desert both wives and challenged children as soon as the disability of their sons/daughters are detected. Some families blame mother of mentally challenged baby that it is due her fault such disordered baby is born and thus numerous mothers are forbidden to conceive second child.
Role of NGO's
NGO's are involved mainly in imparting training, education, awareness, physiotherapy, occupational therapy etc. to the challenged people and their parents and family members thus helping the optimization of self-dependency. Many NGOs are involved in running orphanage.
Protection offered by governments of other countries
In many developed countries these profoundly and severely affected challenged children/persons are being looked after in the community based Residential Care Home run by the state administration. Other moderately challenged persons are drawing financial grant from the government for managing themselves. Thus lives of challenged persons are not affected even after the deaths of parents.
Government aided residential special school and orphanage/shelter workshop
Whereas, in India there is no such arrangement by the state machinery. There is no state run home by State or Central Government.
National Trust Act-1999 has aroused hope
This act has solved the question of legal guardianship and the National Trust a body created by this act has been working to promote for the care and protection of persons with disability after the death of their parent or guardian. Objective of this act can be materialized only when the parents and other NGO in partnership with the Government to establish home for protection of lives of challenged persons. Progress in this regard is very slow.
During the last 10 years after the enactment of National Trust Act, there is no significant development in this regard. All the parents are still worried as the NGOs are not coming forward to establish residential rehabilitation care home. Only Parents organizations are trying to establish Residential Rehabilitation Care Home.
Successful establishment of Residential Rehabilitation Care Home for disabled persons requires the convergence of active support and participation by Parents, common people namely social worker and government as the establishment has to be sustained for a long period.
For further details please contact:-
Mr Anil .Kumar .Jana – President -91- 9331031505
Mr Niranjan Biswas, General Secretary -91-9331031650
Visit our main web at www.arogyasandhan.org
