I Support Foundation is an organization with an idea to educate and develop underprivileged Autistic children, also running a 45 kids’ (currently) strong school in Lucknow that manages their academics and supports them in the best possible way. I Support Foundation was founded in January 2014 by Bobby Ramani sibling of a child with autism. Recognizing the need for a powerful voice has made extraordinary advancements in the autism community. Chief among these are increased awareness of autism, better understanding of the breadth of the autism spectrum, and advocacy to increase research and access to care and support.
I Support Foundation is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with special needs and their families through day care center, advocacy and support; increasing understanding and acceptance of autism spectrum disorder, cerebral palsy, mental retardation and other multiple disabities; and advancing research into causes and better interventions for related conditions. I Support Foundation enhance lives today and is accelerating a spectrum of solutions for tomorrow. Our vision I Support Foundation was founded in January 2014 by Bobby Ramani sibling of a child with autism. Recognizing the need for a powerful voice has made extraordinary advancements in the autism community. Chief among these are increased awareness of autism, better understanding of the breadth of the autism spectrum, and advocacy to increase research and access to care and support. As a team we will require the organization to grow in new ways and build capacity to be a sustaining organization to accelerate progress in science and support individuals with special needs and their families over a lifetime. This will require investment in people, infrastructure and process in order to operate as a best in class non-profit organization.
The aim is to help these children to reach their highest potential and become more and more self-sufficient, also prosper in a holistic way. I Support Foundation is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with special needs and their families through day care center, advocacy and support; increasing understanding and acceptance of autism spectrum disorder, cerebral palsy, mental retardation and other multiple disabities; and advancing research into causes and better interventions for related conditions. I Support Foundation enhance lives today and is accelerating a spectrum of solutions for tomorrow.
However we as an organization also need to take into consideration the Government, it’s policies, it’s budget and also the bigger picture of the country and our people, especially those falling under the Disability spectrum and falling below the Poverty Line.
“The Twelfth Five Year Plan and draft health policy 2015 committed the country to increase public expenditure on health to 2.5% of GDP. This would have required an increase of 30-40% in the Union health budget every year, matched with increased allocations in the state budgets. Knowing that the fiscal space in some of the states with the poorest health status is likely to be the smallest, Union budgets would need to provide a large share. With an allocation of about Rs 33,000 crores – reflecting a token increase in health allocation of 13% over past year’s allocation (which was itself lower than the previous year) – the finance ministry neither allocates the required funds nor provides an indication of the government’s commitment. “
- There are wide gaps between the rural and urban population in its health care system. A staggering 70 per cent of the population still lives in rural areas and has no or limited access to hospitals and clinics. Around 80 per cent of specialists live in urban areas.
- The average growth in expenditure on total healthcare is not only lower than the average GDP growth rate, the expenditure is still lower (as a % of GDP) than the expenditure of even low-income countries, as classified by the World Bank.
Mental health services in India are neglected area which needs immediate attention from the government, policymakers, and civil society organizations. Despite, National Mental Health Programme since 1982 and National Rural Health Mission, there has been a very little effort so far to provide mental health services in rural areas. With increase in population, changing life-style, unemployment, lack of social support and increasing insecurity, it is predicted that there would be a substantial increase in the number of people suffering from mental illness in rural areas. Considering the mental health needs of the rural community and the treatment gap, we must make efforts and advocate for rural mental health services and reduce the treatment gap.
“Surveys indicate that between thirty and forty million Indians suffer psychiatric problems serious enough to require urgent attention. However, there are only 500 psychiatrists, 400 clinical psychologists, and 100 psychiatric social workers to provide them cosmopolitan health care. Most of the mentally ill are cared for by indigenous healers. If these are an all-over estimate, imagine the facts would be if we only keep under the lens our rural areas.”
India is home to a population of 50 million disabled people, the world’s largest outside China. Although 80 per cent of disabled people in India live in rural areas, the government and NGOs direct their activity almost exclusively towards urban centers, and little research has been conducted in rural communities where the incidence of disability is greatest.
ISF has thoroughly been involved with families in rural areas in and around Lucknow, especially with ones that have Persons with Disabilities (PwDs) and the issues that we have always faced and can vouch for them to pose as bigger indicators of help being needed are as follows:
- Ignorance and the so-called laid back attitude. This is the foremost of the challenges we face because this alone leads to every other issue that follows. The attitude of the families is so that they feel the children and whoever the PwD is, have been given up hope on and nothing is done about them.
- The health and developmental milestones of PwD are most often delayed but the parents seem to not catch them and overlook them which makes the disability grow with time. The parents often are unaware of the age that children with disabilities need most care in.
- Hesitation. Be it in terms of talking about their children with disabilities or be it about spending money on their health or even taking them to the cities for better health assistance, parents seem to hesitate a lot. PwDs sadly never make it on their families’ priority lists.
- No Documents. This again is a very big problem. Every time we have gotten in touch with the families of PwDs to be able to assist them, we need documents of theirs to take any further actions, we have mostly first had to assist them with the documents for they are hardly ready, such as Aadhar Cards, CMO certificates, etc.
- Families are often frustrated with the PwDs, because of the lack of services, because of the extra care and extra patience they need to offer and they a lot of times end up blaming them for everything and taking it out on the children in terms of anger, impatience and ignorance.
- Lack of Guidance. When a family for further treatment and medical help of the PwDs takes the child to the cities, they are lost once they reach, in terms of doctor’s appointments and stuff. They don’t have proper guidance in the hospital and don’t usually know what to do once reached there. They often come back having made anything fruitful out of their visit to the city hospital and it again takes them a year to visit again. This obviously delays the growth of the child with a lot of gap.
- About 70 % of the population in rural areas are unaware of the Viklang Pension Yojna, under which an amount of Rs. 300 is offered to the families with PwDs annually. The fact is that this being a helpful Yojna, it is still hardly known to the families in the rural areas.
- ASHA Workers and Aanganbaadi workers are posed as the helpers in the rural areas and do good work otherwise but in terms of mental illness and disabilities, they themselves are not much aware.
- Rural areas have a culture of physicians only and not psychiatrists, which is why physical health is given more importance to over mental health.
- The transportation poses as a big problem for the rural population, especially because the roads aren’t well connected to the cities, and even if they are, they are through buses in which again traveling with a PwD is not at all easy.
- The Health Budget in terms of our National Budget is not a priority yet and then for it to reach a point where the budget for Mental and Health Disability becomes a priority there is a long way to go.
- There is a very visible lack of Special Educators in rural areas. Technically, every school across the country should have at least 2 special educators but that is clearly not followed.
- The villages have Primary Healthcare Centres but when the doctors are approached regarding mental health, they are often blank.
We at ISF have made it a point to fight these challenges our own way, as much as we can. Our major concerns and points of planning being the follows:
- ISF Regional Centres : Our first and foremost goal is to set up regional centres in villages and areas with considerably a stronger need for them, also keeping in mind the population and situation of PwDs in the same. These centres will offer Skill Development Programs for the children with disabilities and their mothers, assuring them self-sufficiency, better mental health care and development and also employment for the mothers at the centres itself. ISF also plans to provide Physiotherapists and Special Educators for PwDs in the rural areas.
- Working on the Individual Education Plan for the children with disabilities. The teachers are further made to follow the plan and extensively work on the individual growth and development of each child.
- Counseling and Support Group for Families. A lot of times, the families are just a counseling session away from coming on the right track in terms of their child’s mental growth and a little bit of venting out, sharing and the right guidance is all that they need.
- Sensitization Talks and Awareness Programs to be carried out in the Rural Areas. These talks are spread out around across the causes of Autism, the social evils, the isolation tagged along with it, such as Bullying, Labeling, Early Marriage, Unplanned Pregnancy, Empowerment of PwDS, etc.
We at I Support Foundation are committed towards making Lucknow and furthermore the country a differently-abled friendly place for PWDs and are hopeful of filling in for and fighting the challenges tagged along to it effectively and efficiently, towards a fuller society.