Dr. Vibha Krishnamurthy, paediatrician, founder of Ummeed, felicitated with Rotary Club of Bombay’s Social Service Award
Good afternoon, everyone. I just want to say a very big thank you and to say how honoured and humbled I am by this award. And I have to say it feels very special because I look around me, and who I see is my community. And it includes so many people here who are friends, who are neighbours, who are colleagues, and who have been patient families. It really feels like this is coming back. And you know you’re really old when you start getting awards like this, but I have to say that it feels very special. So thank you so much.
I’m taking a few minutes to speak a little bit about my work, and I’d be delighted to talk to people after this if they are interested to know more. So Ummeed, in Hindi, in Urdu, means hope. And it was started with hope for every child. So one of the things I get asked is: “Children with disabilities — that’s a really small niche, isn’t it? Why would you even do that? Does it really matter in a country like ours?”
If you look at the Indian census — take a guess — what does the Indian census report about the number of children or people with disabilities in India? The Census of India says 2.2%. And we know that India is a country of contrasts.
On the left, you have our beautiful vision of Bombay. We know this is a place where people come for medical tourism. We are super-advanced. We have all kinds of stuff going on. But on the right side, we still have issues that matter to us. Thirty-odd per cent — one in three kids under the age of five — is malnourished. And so people tell me, come on, disabilities? It’s a small thing. Do you really need to focus on that? Let’s fix issues of malnutrition. Let’s fix other bigger problems that we have in India. And I hope to convince you otherwise.
So the prevalence of childhood disability is actually one in six kids. One in six — that’s 15%. And that’s a very recent statistic that comes from the WHO and UNICEF in a report that we helped write in 2023. So if you just do the maths, the number of kids in India who are under the age of 14 who have a disability is 52 million, right? Fifty-two million is the population of a small European state — a not-so-small European country, I’m thinking. Probably the population of France or Italy or something. We have that many kids under the age of 15 who have a disability. So how is this even possible? How come there are so many kids? That’s because when you think about children with disabilities, you’re going to think of two kinds.
The one on the left is one of my patients — let’s call him Tanay. Tanay was a week old when I saw him. And I knew that he was going to have developmental delays because he has Down syndrome. When you think of disability, you think Down syndrome, you probably think wheelchair, you may think visual impairment, you may think a cane, you may think a hearing aid. But in fact, a lot of kids look like this.
That’s my other patient, Shambo, who got diagnosed very, very late at age five with autism. And he has a mother who’s a techie, very savvy, she knew all about child development, and she went from physician to physician trying to get a diagnosis, which was really hard because it was not visible. So amongst us all, if you see that statistic of one in six, there are people sitting in here, there are people in our families. If you think about your child’s class, which has 40 kids, surely you can identify six kids who have some kind of delay in reading, writing, paying attention, struggling with socialising with other kids. So if you include all those invisible disabilities, the issue is really that big.
Here’s the other thing, though. We have the science and the data that tells us that we can make a difference. We know that if we identify kids early and we support them, we can have good outcomes. What do I mean by good outcomes? What I mean is not just that the IQ points improve, or the kid’s going to become normal, or that the maths levels are going to go up. What I mean when I say good outcomes is — what are good outcomes for any child? They get to have friends, they get to play with other kids, they get to go to a school like all other children, right? A right to participate in society instead of just being relegated to being on the fringes, or being marginalised in the way that they are today.
So do children with disabilities matter in a country like ours? I want to say yes. So I’ll tell you a little bit about my journey. Martin Luther King said this: Take the first step in faith. You don’t have to see the whole staircase, just take the first step. And so that’s how we really started.
In 2001, Ummeed began with a hope and a prayer, as they say, and with a handful of people — literally five of us. And one of the oldest people who worked at Ummeed is sitting right there at the back, Ushma, who’s also a Rotarian. And what we knew at that point in time was that we had this vision — that all children with developmental disabilities would be included, would be able to participate in society. So it was one team under one roof, and families did not have to go from a speech therapist in Tardeo to a physical therapist in Parel, to somebody else in Bandra, and then come to the centre. They all were under one roof.
And the idea was — the buck stops with the family. It has to be family-centred. You can’t have a therapist doing something magical in a room with a child with a disability while the family waits outside, which is how it was at that point in time, and sadly is quite often even now. Because at the end of the day, it’s the family who is with the child 24×7. They need to have a say in what happens with the child. So we wanted to be family-centred. And it was very clear that the children who need our support the most are those who can least afford us. And so it was care for all, which became a principle for our not-for-profit.
From there, today, we are 130 people. We are working together as physicians, physical therapists, occupational therapists, special educators, speech therapists, psychologists, mental health professionals, social workers, and families. So families also work at Ummeed. I’ll tell you more about that in a minute.
Over time, we expanded to training other people, because if you have a centre-based model, only so many people can come to your centre. You have to go out and access the kids who can’t come to your centre. So we said, fine, we’re going to train those who do have access to the kids. So from Anganwadi and Asha workers, to teachers, to therapists, to physicians, we train. Till date, we have trained about 10,000 professionals. We also do research, and we’ve been published in The Lancet, we’ve been published in various other journals, and we are big on advocacy and awareness.
Some of the Rotarians here have supported us in our efforts to raise awareness about disabilities. So what next? Our question really became — what next? Where do we go from here? The answers were different for Ummeed and for me.
I’m happy to say that about a year ago, I stepped down from a leadership position. I am still part of Ummeed, I still see my patients, but I have other new projects going on, and there’s a fantastic leadership team. I see that as one of the proudest achievements that I have to my name — that I had a succession plan and I executed it.
So what we want to do now is — from a reach of 4.5 lakh children and families to date through our clinical services and through training those who reach out to these children — we are aiming to reach out to one million additional children.
How are we going to do this? Through systems change. So we’re thinking about three ecosystems. One is all children. That’s at the bottom of the rung — every single child needs certain services to support their development. So, for example, a safe and loving home is something that every single child needs. But there are some children who are at risk. If you’re born into poverty, have anaemia, have malnutrition, or experience domestic violence in the home, you’re much more likely to be delayed as far as your development is concerned. You’re much more likely to have reading difficulties, emotional difficulties, and for those children, we need extra support.
And at the tip of the pyramid, we have the children with diagnosed developmental disabilities who need a lot more support. So how do we reach all these kids through three ecosystems? One is of course the healthcare ecosystems, doctors, therapists, et cetera. The second is what we call the early childhood development ecosystem, which is through community workers, Anganwadi workers, all those people. And the third is through schools. So Ummeed works in all these three spaces.
I want you to note that we are not just a healthcare organisation, because disability is not a disease. It’s as much a psychological and social issue as a health one. Therefore, it is important for us to be engaged as communities and schools in supporting children with disabilities.
The one thing I wanted to say about leadership, and the reason I was very reluctant and gave Anand a really hard time about accepting this award, was because I really feel it’s a team that makes whatever work happens, happen. I’ve been singularly fortunate, and so many of my team members are here today, and it would not have happened without them. Today we’re 130. But from the time we were five to 130, it has never been lonely. It has always been fun. And of course the families. The families are who really bring alive Ummeed. And what happens with the families, and what is different about Ummeed, is that we truly believe in the slogan for the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities): Nothing about us without us.
There is always a power differential between a physician and you. Those of you who are physicians, you know this. And those of you who’ve been at the other end of the desk, you know this only too well, right? There’s a difference in power, and we are trying to change that. We want to hear the voices of families. We want to hear the voices of young children and self-advocates who are older, who believe that they have something to say. And so with that, I will leave it to my beloved patient, Sanket, to say something to you. Today Sanket is an employee at Ummeed. To me, that has been an integral part of my life. It has been like a family. {PPT}
ROTARIANS ASK
- The centre that we support for early intervention for neurodivergent children is at Mankhurd. And we see the children come with their parents, and we’re trying to support that initiative. But we really need support and advice from an organisation such as yours to give nutrition advice to the parents, to help in maybe with a speech therapist, to also help us get the parents to understand some of the issues, you know, behavioural issues. So though we do have occupational therapists and behavioural therapists, I think we would wonder if you could support us in any way.
Thank you so much, and it’s great to hear about the work that’s happening. Of course, we’d be happy to support. I do have to say that again we go back to the fact that when you have children with disabilities or children at risk of disabilities, we try to build that capacity in the community. So we do believe that going in and trying to fix something is really not going to work. So coming in as a team from outside and doing camps, you know, like you do for cataracts or things like that, does not work for childhood disability because you can’t go in one day, fix a child’s development, and come back. It’s a longitudinal, ongoing support that we need, and it requires community-wide change. So we would probably try to build capacity in the local Anganwadi workers, the ASHA workers, the school teachers, and that would be the way of moving ahead with that. But sure, we’d be happy to have a conversation.
- Fantastic work, Dr. Krishnamurthy. My question is, there are various children with various disabilities or developmental disorders. So each treatment is different — someone with maybe, I don’t know, autism or someone with some other issue.
You’re absolutely right — every child is different, every family is different, and every situation is different. So it’s very hard to make generalisations about children with disabilities. We try to see the endpoint as the same for all children, right? And the endpoint is the same thing. We call them the F words. So all children need to have family, friends, fun, fitness, and a future, right? So we want to make sure that every child has access to all of these, and that’s the endpoint we’re looking at. How we go about it depends upon the child’s disability, the family situation — so many things related to that.
- I’ve been in the CSR space for a while, and I can understand that this whole thing of neurodiversity and inclusion is just about taking on some sort of traction. This whole thing of succession, which you spoke about, is generally the biggest challenge. But I was most interested in two things — the first was when you’re looking at building the capacity of the community with the Anganwadi workers and stuff, I’d love it if you could maybe share some illustrations on what those tactics involve. So they become support systems for the parents of the kids and sort of create that ecosystem for them. And secondly, are you looking at some sort of a hybridised structure when you’re moving from your 4.5 lakh to an incremental one million? So is technology really going to play some part in it? If so, how? Keeping in mind that, of course, you need the human touch.
Both great questions and both things that we have obviously pondered deeply. So in terms of community interventions and building capacity in Anganwadi workers and so forth, in fact, we have two statewide projects that are happening now. One is with a district in Maharashtra. So we are working with the Yavatmal district in Maharashtra with Anganwadi workers and ASHA workers there. And the other one is actually a statewide partnership with the state of Meghalaya. So Meghalaya has a very interesting government right now and a very forward-thinking Chief Minister and Principal Secretary. And their aim is — we have a five-year project going on with them where they are going to be training 10,000 Anganwadi workers and ASHA workers.
So what we do then, actually, when we say we are building capacity, is we are making sure that we are creating a system where we don’t say “disabled, not disabled,” and then leave them. What you don’t want is to count, stigmatise, and run away. You can’t do that. And let’s be clear, in some of the remote places you go to in rural India, in a hilly state like Meghalaya, there’s no capacity to have therapists and developmental paediatricians and so forth. So we build capacity in the Anganwadi workers to monitor early childhood development, continuously watch the child from the time the child is a baby, and pick up the developmental delay early. One and a half and not saying a single word? OK, let’s think about what you’re going to tell the parents and build capacity in the parents to support their child. So right now, with community work, that’s our focus.
The zero-to-three age group is actually the most sensitive in terms of brain neuroplasticity. Your brain is exquisitely sensitive to the input that you get, so we have focused a lot of energy on the zero-to-three age group. And yes, plans for hybrid teaching do exist, and I’m happy to discuss that with you.
- A lot of schools these days send children for diagnosis for learning disabilities, ADD, ADHD — those sorts of diagnoses — which are also disabilities. As you rightly said, disability is not just one end of the spectrum or the other. What I wanted to ask you was, a lot of grandparents, older generations are like, “I used to fidget in class. I used to have spelling mistakes. I used to do this. All this is kind of unnecessary.” What do you say to people like that, where we as parents know that our children need that help, but there are a lot of parents who think that these kinds of things are not really disabilities — that it will just sort of go away? What do you say to that?
You know, I love that question. And I’m curious to know what people do say to that.
My response is usually to say, you know, like somebody asked one of the speakers at a conference that I was at, “I’ve heard Bill Gates has autism. Is that true?” And the speaker responded, “Maybe he does, but I do know one more thing — he doesn’t need me,” right?
So if it ain’t broke, you don’t fix it. And what we need to tell people is that it doesn’t really matter whether we give it a label or not. The point is — there is one of those Fs which is not working. Either the kid doesn’t have friends, or they are struggling in school in some way, or family life is affected, or, you know, you’re concerned about some aspect of the child’s development. And if that’s the case, let’s address that. I’m not wedded to labels, but I am committed to understanding the child’s development so we can support the child.
So that would be my approach — telling people, you know what, it’s clearly not “nothing” because it’s affecting A or B or C, right? Let’s address that. Maybe you don’t want to give it a name and I do, but that’s okay, so long as we understand the little kid and, you know, we can address their needs.
- I just wanted to ask you, you talked about how you have Anganwadi and other supporters who work on the ground to train people in the rural areas and the less exposed areas of society, but I wanted to ask you, how can we bring that into the mainstream schools and setups also? Because a lot of the time, I find that we have to go out privately, figure out where we need to be guided. We are lost. It takes us a few years to get to the right professionals. So how can, like you said, that there needs to be community awareness and support — how do we bring this into mainstream schools too?
I could not agree with you more. I think schools are where kids spend a majority of their day for a big part of their childhood. And we have to address the issue of schools. So Ummeed, as you saw, has three ecosystems we work with — healthcare, schools, and early childhood development. And we have a big school outreach team that does sensitisation and awareness in schools. But within schools itself, I’m going to urge you to take action. You create a call to action in your school and say, let’s band together as parents of kids with disabilities. Let’s create a support group within the school. Do they have a counsellor? Do they have a special educator? The unfortunate thing is that there is so much stigma around this that no one — I mean, I have at one point in time in my children’s school seen four kids from the same class with developmental disabilities, and each one did not know about the other, right? And I’m bound to confidentiality, so I’m obviously not going to share it with you. And it broke my heart because I used to speak to each child, and each child thought they were incredibly alone in their disability. So just imagine what would have happened if those four parents had been part of a larger group of 50 parents. And we know the numbers, right? In a class of 40, there’s going to be six or seven kids. So if they got together and created pressure from below in the schools to say, come on, we need to do something about this. So I’m going to say it has to be collective action. An organisation like Ummeed can help with the expertise, but I think the pressure needs to come from below.
- So just in continuation to that, I just wanted to ask you, how does a parent — where do they go for guidance to start something like that? Because more often than not, I think mainstream schools, except one or two, are not even accepting children who are neurodivergent. And even if the kid is accepted, there are many — like, it’s very rare to get even two kids in a class that are neurodivergent. There may be years between them. Also, there is a lot of resistance from the schools, as you know it, you know the system. And if there is a parent who’s really trying to advocate and push them, they become labelled a pushy parent. How does a parent start? There are a lot of initiatives that people like you and other professionals and individuals have taken, but how can a parent like me make a difference today when there are so many setups, but still in the school, in the system, things are not working out?
So my suggestion would be to walk into Ummeed’s Family Resource Centre. It’s by families, for families. We have a centre that’s run by families, and they sit there every single day. And they are there to support other families. And they do tons of activities. They have a family support group. They offer advocacy resources. So definitely, that’s a starting point.
- What are you doing in terms of leveraging the government? And what are you doing around the local authorities, state governments, etc.? Because this is a huge issue all over the world. And I can see these oases that you’re building. But how do you actually make structural change in such a big country?
That’s an easy one. I think it’s been really hard to get a foot in through the door, and like I said, systemic change really requires — I’m going to say — commitment from the top to make a difference.
So what has been a real lesson to us is working with the state of Meghalaya and seeing what happens when you have the top player that’s really committed. So we are making structural systemic changes in one state because of the partnership that we have from there. And it’s been really interesting because they are pulling together into one room people from different systems. So from their social welfare system to their women and child development system to their human resources and human development system, they’re pulling together all the pieces and making sure that they are training every single last-mile community worker who deals with children from zero to three. For that to happen, we really — we keep knocking at doors, but it really depends on, you know, the top-level administrative people having the will to do that. So I’m going to say if you know of people who are interested in creating that systemic change, they’re going to be people like us who will stick their necks out and say, we’ll do it with you. But I think without that, without the political will — in fact, I do a talk on school system change called Dil, Will or Skill, which basically talks about Dil being the motivation, the attitude, Will being the policies, and Skill being the skills required to implement or practise those policies. So it really needs a culture, policy, and practice all coming together. And for that, we really need commitment from the top.