Archana Chandra, Ceo & Administrative Director, Jai Vakeel Foundation, Talks About Intellectual Disability
It is indeed a pleasure to receive this award. I want to say a heartfelt thank you for recognising and rewarding the work that we do at the Jai Vakeel Foundation with children and adults with intellectual disability. I think receiving this award for Best Teacher 2021 could not have come at a better time for us. At Jai Vakeel almost 76% of the students that we work with come from the lower socio-economic strata. While COVID-19 has affected all of us in some shape or form, it has exacerbated the condition of the children and families that we work with in terms of the disparity and equity. I think at this point our teachers (they comprise 91 in our staff of 250) have pivoted so beautifully in spite or despite of losses and illnesses in their own homes. They have done whatever it takes for our kids in ensuring that no child is left behind. So, thank you again! It is really special receiving this award.
If we were in a physical session, I would have loved to ask anyone in the audience: what is intellectual disability? Lower IQ. It is an IQ based condition. The normal/average IQ is 100. All the students that we work with have an IQ of 70 and below. What I have found in my 13 years of working at the Jai Vakeel Foundation is that these children, almost always, also have some other disabilities which are associated with the condition. So, it could vary from visual impairment, hearing impairment, cerebral palsy, autism, behaviour issues and or a combination of these conditions. What I have also learnt is that no amount of surgery can change one’s IQ. Therefore, what we have to do is really equip our children and their families to be as independent as possible in their daily lives.
What do we do at Jai Vakeel? It is a 76-year-old organization that was started in 1944 by Mr and Mrs Vakeel who had a daughter with Down syndrome. At that time there were no educational institutions that she could be sent to. There were no therapy avenues either. They decided to start in their own house with one child. Over the last 76 years we have grown into a 2-acre campus in Sewri where we serve more than 780 students directly on our three campuses.
This is really a difficult task because having an intellectual disability in itself is really hard. I think within the entire spectrum of disabilities, this disability is the most invisible. Because if I tell you that I work with the visually challenged, you will immediately imagine a child with black glasses and a white cane. But we have found that almost always when we mention the intellectually challenged, we draw a blank look from people. Thus, this makes the work we do at Jai Vakeel not only urgent but really important.
When we looked at data, we found a study done by Kalgotra et al of IDD India which said that 85% of the total population had mild intellectual disability while the severely and profoundly disabled made up only 5%. When we look at our students at Jai vakeel, there is a very different picture. The kids that have borderline and mild intellectual disability account for only for 21.8% whereas 46% (against the study’s 5%) of our kids are severely and profoundly challenged. In fact, this is one of the USPs of Jai Vakeel. Over 76 years we have never refused admission to any child on grounds of their IQ being too low or not fulfilling any of the minimum requirements or financial inability to pay for any of the services we provide.
What is our goal? It is the inclusion of our students by maximising their potential. We have defined inclusion at the family, community and society levels. How do we do this? We have three broad interventions: health care, education and skill development. What does each of these mean? The starting point for all of our kids is the IQ number. For example, a government hospital like the JJ Hospital would say : Archana is 33, Anjali is 44, Shernaz is 55 and so on. However, that number actually tells you nothing in terms of what stage of development the subject is at or what are the means of going forward. Parents take the IQ number and come to us in our healthcare department where Dr Goel has been with us for over 25 years now. We have an entire team of doctors and therapists who assess every single child to see what stage of development he or she is at. What are the needs in terms of therapy, and counselling not just for the child but also for the parent? Then when the child is ready for the classroom integration, we move to the school which is typically from ages 3 to 18 years. In school it depends on where the student is on the IQ spectrum. If he or she is borderline and mild, then the National Institute of Open Schooling (NIOS) is the way forward where the student is allowed to do one or two subjects at a time as per their ability. If the child is in the middle, moderate or severe ranges, we find that academic learning is not the answer. Functional academics is more appropriate for these children. So, I am still teaching the child maths but it does not involve theorems and stuff, it is functional to the extent that the student can now read the bus route number and travel from home to school or go to the baniya ka dukaan and buy a packet of snacks for Rs. 8 and know the transactional value of money. And if the student is on the right end of the spectrum that is, severely and profoundly challenged, then we have found that academic learning becomes a secondary goal and the primary goal which the parents too want is for their children to be as independent as possible in their activities of daily life. This means they are able to bathe communicate needs, eat on their own.
The Jai Vakeel Foundation worked with the government to create a framework in the 1950s that all the schools are still following. From 2013 to 2019 we drafted our own curriculum for this space that we are using at Jai Vakeel as well as other schools in Maharashtra. When the child turns 18, they move to the skill development sector where we have a vocational training class where they are equipped to be placed outside Jai Vakeel. This a huge purpose for us. Again, we have learnt that not all children can be actually placed outside the institution. We want to and endeavour to do right by each child. If the child is not able to go out, we move them to our shelter workshop. Here we have eight different vocations that we teach them and at the end of the training they are all paid a stipend in order to boost their self-esteem.
It was actually really heartening to hear of the initiatives you have been taking during COVID-19. For us at Jai Vakeel too, life was proceeding smoothly till March 2020 when the pandemic struck. We broke down our intervention programme into three phases; phase I starting from March to June was staying connected with our children and ensuring their well-being. It was at that time that 4500 calls were made to our children just to ensure that all was well at their homes. We inquired if there was food on the table and if they were safe. Food packages 563 grocery kits and medicines were provided because neuro drugs cannot be stopped no matter what. We had to do this because a lot of our parents lost their livelihoods during this period. Some were daily wage earners and even We had also taken measurements for some of the children for orthoses. Inspite of the lockdown, four orthoses were delivered to the children to ensure prevention of long-term damage.
Phase II was from April when the parents started telling us that COVID is not going to end soon the children were getting restless and they were at a loss as to how to engage them. They asked us if could create some sort of structured time table for the child at home. This is when some of our teachers stepped up to the challenge. Some of them were at their home villages, some had limited Wi-Fi, some did not have phones to design and make videos. However, our teachers and the staff and we created the first digital content library which had over 150 videos across 18 playlists ranging from drama, music, academics, yoga and so on. It was like an assembly and we really simulated the classroom environment for the children in the summer break last year. We opened it not only for the Jai Vakeel kids but overall, at over 1000 subscribers really quickly.
Phase III for us was thinking about what is the online education plan applied because COVID-19 was still continuing in June. Again, the teachers had to adjust because the material was all meant for physical online classes. And for students like ours, retaining attention for over a longer period of time was a huge challenge. Of course, we had challenges in terms of technology, access to smart phones, data recharge, all of those and we solved it by giving over 100 phones to the kids, 115 of our teachers got dongles because they needed unrestricted wi-fi to be able to take the classes. Tablets were given to the teachers as well as training in how to use these devices. I think it was easier relatively to get the hardware in place but doing the things like how to start the zoom call, how to create a waiting room, how to conduct a class online? Those kinds of trainings we had to do for our students and teachers. They adapted to it so, beautifully.
That was fun and learning happening simultaneously in the classrooms in school. Even in the skill development section, we made virtual kits, boxes were sent to the children’s’ home for diya making, candle making, one was given sewing machines because she was so good at doing that from her house. This enabled us to make almost 13000 products which we sold at the Diwali time. We were really nervous about the online sales but the team and the teachers coped beautifully. We held online exhibitions in people’s homes and we sold products worth about Rs 44 lakhs. Just to put that figure in context, our total sale for the previous year was Rs 1 crore. June 2020 was the year when we partnered with the government of Maharashtra to take our curriculum to almost 400 schools all-over Maharashtra and to be frank for a split second we thought that we are not going to be able to do it. It is one thing to train your own teachers and give all the support they need but how you are going to do this for 2000 teachers? Again, it was a momentary sense of panic but deep down we knew that we had to do this; we had to cope because all the schools were dependent on us. Once the team figured out how to do this, we broke the sessions into online Zoom sessions which were few but a lot of the training was offline and videos were made, calls were made, smaller groups were made through which all of this was shared. Material was sent to them and a lot of our teachers went to the students’ house to disburse the worksheets and materials. We were so proud of how all of this happened despite the pandemic.
We were hoping that sometime this year we would be able to reopen and have some hybrid form of classrooms but alas that was not to be. When we were thinking about that we realised that there were a lot of parents and students who were struggling to receive COVID vaccination. The parents were unable to navigate the CoWin app, others who took the children to the vaccination centres had to witness the children having melt downs and refusing to be vaccinated. So, it was really hard and that is why we decide to tie up with Jaslok Hospital for a vaccination drive on our campus for not just the child but the entire family as well as our staff. It was at this time that (some of our children come from Baal Asha and other orphanages) we found that their staff was also struggling to take the vaccination so we got all of them together and vaccinated nearly 1000 people. When the children and parents were coming to the campus, we found that a lot of the children had outgrown the orthoses that they had a year ago. They were unable to use them. We organized an orthoses camp to re-asses and re-evaluate all our children on the campus. We came across behaviour issues manifesting in the child. Some, because of family conditions, some because of the pandemic and the parents were finding it difficult to manage them at home. So, we have from June onwards undertaken to do a medical and therapeutic assessment for all our children in small batches of 25. Dr Nilam Goel could bear witness that there have been issues, there have been regression, the dependency on drugs has increased and therefore we really need to step up and do more in the coming months.
Another short film.
We will continue to do all the work and more for our children. But I think it is platforms like these where we are able to talk about this group of people that we work with and share the unconditional love and joy they give us that are the only way to ensure a future for them where they are included and feel they belong just like you and me.
You said 85% of our population is with mild IQ issues?
So, it is 2% of our total population that has intellectual disability as per the data from NIPER and of that 85% have mild.
Is it something to do with the nutritional status of the mother?
Down syndrome is where you have an additional chromosome, consanguineous marriages add a few complications. A lot of time it is the health of the mother terms of taking folic acid, the gap between the two children, malnutrition and so on. We have found that in a lot of cases wherein when the child is being born, there is no neo-natal facility for oxygen at the time of birth. Lack of oxygen even for a few seconds can affect the brain adversely and the child can have issues for the rest of their lives.
Do you find that these children are far more loving and have gentle innocence that you will not see elsewhere?
You couldn’t have framed it better. The first time I went to Jai Vakeel, I was taken there by my friend Anaita Pandole and I asked her how am I going to work with these kids? I am not trained or equipped to work with them. I was worried about how would engage with them. She took me to the school, I walked through the classrooms and conditional pure love and happiness in unparallel, honestly you can’t get that even from your own children. The pure joy, pure positive energy and so much delight, so much pride in sharing with you every little accomplishment that they reach and arrive at, my heart got engaged and that is how I stayed because it was way wired in the corporate world. I went back and looked at the data and I found that the data says 1 in 50 people have intellectual disability and that really shook me. If the numbers are so high, I don’t remember seeing anybody at the public places anywhere, not even at the family weddings and gatherings. So, that is how my head and heart got engaged and I stayed for 13 years.
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