Beyond Numbers: Rethinking How We Measure and Support Disability

Daniel Mont, CEO and co-founder of the Center for Inclusive Policy, shares insights on bridging the gap between disability advocacy and effective policy implementation. The conversation explores how to move beyond awareness-raising to create evidence-based policies that meaningfully improve the lives of people with disabilities.

• Center for Inclusive Policy was created to address the need for evidence-based disability inclusion policies
• About 25% of households include someone with a disability, making this a significant demographic
• GDP would be 4-7% higher if people with disabilities had equal access to labor markets
• Disability data varies widely depending on definition and measurement tool used
• Disability exists on a continuum, not as a binary classification
• Data collection needs to be purpose-driven – different policies require different data
• Many innovations designed for accessibility (voice recognition, closed captioning, telephones) benefit everyone
• Progressive countries are moving toward policies that address disability-related extra costs rather than presuming inability to work

Contact the Center for Inclusive Policy at inclusive-policy.org to learn more about their work in social protection, employment support, and data systems improvement.

Chapters

• 0:00 Introduction to Daniel Mott
• 1:42 Creating the Center for Inclusive Policy
• 5:32 Measuring Disability: The Data Challenge
• 10:14 Disability Definitions and Purpose-Driven Data
• 14:15 Accessibility Benefits Everyone
• 19:35 Global Progress vs US Data Reduction
• 22:09 Rethinking Disability Benefits and Support
• 25:38 Closing and Contact Information

Transcript

Debra Ruh: 0:00

Hi everyone, welcome to Access Chat. Today we have Daniel Mont. He's the CEO and the co-founder of the Center of Inclusive Policy and he's joining us from Washington DC. I will say that, luckily, antonio was able to join us because he's just getting back from a conference and Neil is still at Xero Project in Vienna, so he was not able to join us today. But, Daniel, thank you so much for joining us. Do you mind telling the audience a little bit about who you are and how you became the CEO and co-founder of the center?

Daniel Mont: 0:34

Sure, hi, and thank you so much for having me. Yeah, so I worked for the World Bank for many years as a senior economist on disability issues and poverty issues, and then I left there to found the Center for Inclusive Policy, mainly because at the time that was about 10 years ago, right after the Convention on the Rights of Persons with Disabilities the issue of disability inclusion had become very prominent and the disability community had become very good at advocating for themselves in terms of awareness raising and trying to promote their rights of people with disabilities. But then we transitioned into a stage where people wanted to know well, what exactly should we do about this? Okay, you've convinced us that the people with disabilities are a significant, important part of the population. You've convinced us that there's gaps in the exclusion, there's barriers that need to be addressed. Now we want to know what are the effective and efficient ways to try to address these problems.

Daniel Mont: 1:35

And the way I like to put it was that the disability advocates were very good at getting into the room, but not so great at saying what they wanted once they got in the room.

Daniel Mont: 1:45

Because people wanted evidence-based information, people wanted specific policy actions that could be taken to address these things, and so what we had was we had a community of different disability organizations that knew an awful lot about disability and what it means to live as a person with a disability in the world, but not a lot of detailed information about policy analysis or evidence-based advocacy.

Daniel Mont: 2:08

On the other side, we had people like in UN-type agencies or the World Bank who know a tremendous amount about policy and gathering evidence, but not a whole lot about disability, and so we thought this is a nexus where we need an organization that was able to sort of catalyze action between the two groups, and so we do research, but we also do advice, a technical support and capacity building, and we're involved with various governments, with implementing various policies, again trying to find out what are those knowledge gaps, what are those frameworks for thinking about building inclusive policies that need to be constructed and then bringing, trying to catalyze action between the different stakeholders so they can actually achieve real-world improvements for the lives of people with disabilities.

Debra Ruh: 2:58

Well, I know that this was needed, but it also seems like at a time where, for example, you and I are both in the lovely United States of America and I know that I know everyone's very confused to just saying there's just nothing but chaos.

Daniel Mont: 3:12

So it seems like during this chaotic time, it's we really need to be able to show concrete information and to come up with realistic, effective strategies for addressing these things, and there's several components to that. One is the awareness raising. Now, what just the percentage of the population has a disability? It's the percentage of the people who live in households with the person with a disability, because if your child has a disability, if your spouse or your parent has a disability, then the extra costs that those people face, the discrimination they face, or whatever it is, is affecting the whole household, and when you look at it that way, it's about 25% of the population.

Daniel Mont: 4:03

So this is not a small group of people. This is a big chunk of us. And then the question is how does that play out in their lives? It plays out differently depending whether you're a child or an old person, depending whether you have, say, a physical disability or a psychosocial one, and so it's a complex area that really needs us to then really uncover what are the mechanisms that are creating exclusion. And it's significant. I mean the International Labor Organization did a study which their estimates were that GDP would be about 4% to 7% higher if people with disabilities had the same access to labor markets and jobs as people without disabilities and 47 percent of GDP is nothing to sneeze at.

Debra Ruh: 4:51

No, and it seems to me that and I'm going to turn it over to Antonio that you're actually talking about human inclusion, making sure that humans are included in every single phase of their life. And I'm one of those families that I didn't know that I'd ever met anybody with a disability until I had a daughter with Down syndrome, and then I realized as I got in the field I'm surrounded by people with disabilities, including myself, because it's just part of the human experience. But, antonio, over to you.

Antonio Santos: 5:16

I think we talked on this podcast before about reliability of data, about people with disabilities, and we often realize that there's plenty of data out there that is not good enough to our purposes, and sometimes we throw data about oh, we have, 15% of people have a disability. And when we dive deep into those numbers and to the origin and the source of the data, we realize that in some cases there are data that is a decade old or some countries are not updating their data for a long period of time. So then how can we get more reliable data on this topic?

Daniel Mont: 5:52

This is something that we've worked really hard on since about 2003. The UN Statistical Commission had a big global conference to address this problem that we have really lousy data on disability, and from that they formed a city group uh, the new institutional commission. When there's a tricky uh measurement issue, they form these things called city groups and they invite the national statistical offices of all member states to come in who want to come in and work on the issue. Unfortunately, it's always named after the first city it meets in, and the first city it met in was the was washington. So people have heard of the washington group questions and they think, oh, this isS thing. No, it's an international thing. Dozens of countries have worked on these questions and the questions were designed for. A census based on them is very dear.

Daniel Mont: 6:57

The goal was to create the shortest set of questions that could identify the most people who have a disability. And what is the definition? There's so many definitions of disability and the definition that was decided for this purpose was people who had functional difficulties that put them at risk of exclusion if they face barriers in the environment. And there's a certain set, and this is the data that is used now as the international standard for prevalence. Okay, but we know that it's not complete. We know it's not complete because there's a Washington group extended set that addresses psychosocial issues which are not really part of the original Washington group questions. And then there was an issue with the Washington Group questions because they're not so great at identifying children with developmental disabilities. So UNICEF and the Washington Group came up with the child functioning module, and then the WHO came up with the model disability survey. Was as much longer right? And so, depending on which instrument you use, you get a different number. And then all of these things, whether it's the Washington Group questions or the Model Disability Survey questions, they're designed for statistical purposes. So, in the population, are you identifying a big enough percentage of people who you're trying to identify with enough accuracy that we can make general statements about what's going on in the world? Oh, people with disabilities tend to be older, they tend to be poorer, they tend to, you know, but they're not anywhere near good enough for, say, determining eligibility for a disability certificate. Right, there you need much more detailed information, right? And then you have to think about chronic conditions, pain and fatigue. That's included in the watching troop extended set, not included in the short set. So depending on which data tool you use, you're going to get a different number. And also, another thing to keep in mind is that disability really is not a binary variable. It's not like there's two distinct populations in the world, with and without disability. Right, for example?

Daniel Mont: 8:57

Functional difficulties exist along a continuum, so you have to decide where you draw the line. At what point do these functional difficulties rise to a level where you say, ah, now they're really putting people at risk of exclusion because of barriers in the environment? This is the line I'm going to draw and it's got to be in some sense. I wouldn't go as far as to say arbitrary, but it has to be predetermined for some purpose. And where you put the line really matters, because if I make the line really high level of functional difficulties, I'm going to get fewer people, but they're going to have a bigger gap in employment or poverty.

Daniel Mont: 9:34

I could say, oh, no, no, I want to include all these other people who have functional difficulties which aren't as significant, but I still think they matter in people's lives. Well, I'm going to get a much bigger number, but the gap is going to be smaller because they're not facing the same degree of barriers, right. So do we really want to have two numbers, with and without disability, or do we want to have a gradation? So you have to always think about what's the purpose for me coming up with this number. What's the purpose for me identifying people with disabilities, and then choose the proper tool and the proper instrument. And so it's a little bit nuanced, which is unfortunate, because everybody always wants to know the number. What is the percentage of people with disabilities? And in my mind there's no such thing as the number of people with disabilities.

Antonio Santos: 10:23

No, glad you said that, because I'm a sociologist by training and I always have difficulties when I see campaigns pointing to a number. Difficulties when I see campaigns pointing to a number, when I see that disability is just simply as something that is part of us as humans as we go along our lives. So then the numbers. Sometimes they seem to come up. People might have a very general good intention of coming up with the number here's the number but in the end I don't think it tells the real story and I think we need some kind of shift. In some countries populations are aging and people are above a certain age. They represent most of the population in certain nations. In other countries it's not as much. So I think we need to have a different look into that topic.

Daniel Mont: 11:19

It all comes back to the purpose. So if I'm trying to design a public policy program to provide assistance to people with really high support needs, that's a small percentage of the population, but I want to identify those people. If I'm building a public transportation system and I want that system to work as well as possible for everybody, how many elevators do I need? What is the space I go into designing infrastructure, then I want to know about all the functional issues the ones that are temporary, the ones that are very significant, but also the ones that are a little less significant, because these are people who are going to want to use the elevators. They're not going to want to use the escalators, even if they don't.

Daniel Mont: 12:13

Sort of to use a different definition, a different threshold and one number doesn't fit all purposes and that's a hard message to get across. And often, disability for your purpose. Yes, I do want to know in the United States that whatever 16, 18 or something percent of the population has a disability, but I also want to know that only 2% of them are going to really going to be getting SSDI and yeah, anyway, I'll stop there.

Debra Ruh: 12:50

No, because it's such an important point because we're making decisions on terrible data. I remember when I've written a couple of books about this and I've just tried to I didn't even go there, daniel, what you were talking about. I just gave them two definitions of disabilities, one with the ADA and one with CRPD, and they're different. And so the brands are like well, deborah, I'm confused. And they're different. And so the brains are like well, deborah, I'm confused. And I also want to say I think we make a mistake also by these ridiculous numbers that we cannot prove.

Debra Ruh: 13:34

There was one that we did forever in the United States. I don, and if you are not including people with disabilities, you were leaving that money on the table. You were just wasting it. That's like okay. Now I started hearing that number 2002, 2003. Nobody could ever tell us where it came from. It wasn't grounded.

Debra Ruh: 13:48

And you tell that to the customers and they just think you. There's so many ways they can think right, you obviously don't know what you're talking about. You are, because that is not true when that's we're not leaving out 220, but what's happening is and what I have been trying to talk about is because we do need numbers, blah, blah, blah, blah, but the reality is you are excluding customers. If you were a brand and you were building something, and you're a bank and you want us to use your savings accounts, your checkings account, your different things, but you're also going to upsell me so I can use all these other cool services and apps. If they're not accessible, I can't use them and my family members can't use them, and so we're barely using the basics of your services because they're not accessible to all of our family. So I think it's almost like we're having the wrong Deborah, let me tell a story.

Antonio Santos: 14:45

I was at an event last year, a technology event and I was in a room with a lot of people from media and press and someone said why do you do this podcast and why do you care about accessibility? And I said okay, someone needs an argument from me. And I asked this can you please remove your glasses? Can you see what is written in the board in front of you? No, Can you see the door of the room without the glasses? No, I can't. When you are going down the stairs, can you see? Are you able to go down the stairs without wearing your glasses? No, I can't. So I care, because you know, when we are in place like this, we need to make sure that everyone is included. Everyone can see the screen, everyone is able to see the door. So it's not just why I care about disability, I care. I care about me, I care about you. So I think this it was the shortest way I could find to tell this person why it matters.

Daniel Mont: 15:42

Yeah, and reminds me when I was at the World Bank and we were talking to some country, an island country in the Caribbean, and trying to get them to focus on this, and they were like you know, we have a lot of issues. Why should we care about accessibility, you know? I mean, why should that not? Why should we care, but why should it be a high priority for us? And we said, well, where's your economy coming from? It's coming from cruise ships. Your cruise ship docks at your port. Who do you think is on that ship? A lot of old people who takes cruises. You want those people to be able to comfortably get off that ship and not and come into your town and spend money. You know it's economically worthwhile for you. And that's when they perked up and they said, oh yeah, you're right, this will help our economy to be able to have these people. Helping these people be able to participate in our economy helps the economy for all of us.

Daniel Mont: 16:39

And another thing is sometimes thinking about. Accessibility for people with disabilities leads to innovations and products that apply to everybody. I think voice recognition is the key example that people usually mention that the first attempts at voice recognition a lot of it was focused on letting people with disabilities be able to use the computer. You know, be able to type, you know. And now think about all the uses that we have for voice recognition, our closed captioning. You just have to be in a bar or an airport and see that closed captioning come across the television while you're sitting there. Where do you think the impetus for that came from? It came originally from thinking about how to include people with disabilities, and now it's something that's a benefit for everybody.

Debra Ruh: 17:21

Now it's something that's a benefit for everybody and I love that we have so many beautiful examples like that. Why do we have the telephone? We have the telephone because Alexander Bell was trying to create something to communicate with his wife that was deaf. So there's so much beauty that why do we have?

Antonio Santos: 17:39

you know anyway, I could go into so many. When Steve Jobs was about to develop the iPhone, one of the apps and startups that he went to buy was a startup that was building software for people to be able to navigate within interfaces that led us to be able to use the iPhone with our hands. It was the first thing that he went to buy because it was a way to facilitate everyone's navigation with the phone.

Debra Ruh: 18:06

I know it's sort of beautiful, but let's go back. What I'd like to do just to make sure that the audience gets as much out of this as possible, Daniel. But we see a lot of obviously there's a lot of chaos and we see a lot of people being laid off, certainly in the United States if they have anything to do with DEI and maybe DEIA. Sadly, I know the United States government has the White House removed accessibility from the website, which made me sad as a citizen, but that's okay. But I guess really what I would wonder. So we can talk all day about what the problems are, but what I am wondering, daniel, is how do we navigate forward? How do you recommend that we all navigate forward?

Debra Ruh: 18:51

I know there's, like right now, zero projects happening in Austria. I know that there's a big event coming up in Berlin with you know IDA we're having conferences, we're talking about it. Ida we're having conferences, we're talking about it. But it feels like it sort of feels like we forgot what we were talking. We forgot what we were trying to solve. In some ways, it's starting to feel like to me.

Daniel Mont: 19:14

Yeah, I wish I had all the answers.

Daniel Mont: 19:16

I know that a lot of countries are making progress and part of what they're doing is collecting better data and collecting data designed to try to help them implement policies, and I can give you some examples.

Daniel Mont: 19:29

At the same time, in the US we seem to be jettisoning our data, like was it the health of the retirement. Some of the key surveys that were collected to help SSA monitor its programs have been eliminated, have been eliminated, so we're just sort of like cutting off the sources of information to even be able to see what's happening, let alone try to see what opportunities there might be to include things. So seeing those sources of data disappear really cuts off any action or any informed action. So it's nice to see around the world a lot of countries trying to improve their data management information systems and collect better quality data, data that's more useful for making policy decisions. You see that starting to emerge in places and it's very disheartening in the US to see us just trying to throw all that away. I mean, we talk about wanting to be efficient and effective in how we run our programs. How can you be efficient in how you run your program if you don't collect information about how it's working.

Debra Ruh: 20:34

I know and it's interesting also I know that both of you brought it up the aging data, because the reality is, every single country is dealing with the aging issues. I'm one of the people that are part of the aging issues, but it does seem scary to be turning off good data right now because data is getting us in trouble. But I do think that coming together and I agree with what you're saying, daniel I'm also seeing a lot of very interesting innovations happening in other countries, seeing lots of happening in Asia-Pac, in the Middle East and the MENA regions, but also seeing very interesting things happening in Central and Latin America.

Daniel Mont: 21:14

So you know I'm all. One thing that's encouraging in other countries is, you know, in the United States and some other places, just to show you have a disability to get benefits, you basically have to say that you can't work. Disability is defined as not being able to work, and so it creates this terrible problem of like the only access you have to benefits that could might that might cover the costs of disability costs. Sometimes the main access to health insurance in this country is by declaring proving that you can't work, whereas in other countries now the move really is towards no disability is not associated with an inability to work, but the disability benefits should be going towards the extra cost that people with disabilities face in order to live right. If I have a disability and you don't, I need more money in order to accomplish the same basic things, whether I need assistive technology or personal assistance. There's a whole range of things.

Daniel Mont: 22:12

We're doing studies around the world on this. A bunch of countries truly trying to document where these extra costs come from, trying to think well, how can we design public policies that address these extra costs and the great variety, because people with different types and degrees of disability. They see different kinds of costs. So the idea is let's have a social protection system that makes an equal playing ground, provides for the extra costs that people with disabilities face, and then if you're poor still because you might still be poor you can qualify for the same anti-poverty programs as anybody right, but not associate disability benefits as, oh, these are poor people, we don't want them to starve in the dark, so we'll throw them some money. Instead, say no, we want to provide them the support they need to be able to function on an equal basis with other people. But you need information in order to design, and countries are trying to move in that direction, which is not really how the US does it.

Debra Ruh: 23:07

No, and the problem if you don't move in that direction is that you might have a country like ours that's doing right now. You just see a whole bunch of money being spent. Is it being spent well? Is it being wasted? Is there corruption involved? They're just so big and my daughter with Down syndrome is on government support and I am working really hard to not rely on that. But it's really frightening for the families as we walk this.

Daniel Mont: 23:34

But you know, oh well well, right, and what they're going to do to IDEA, who knows?

Debra Ruh: 23:39

Yeah, yeah, yeah, and 504. Right and so right, and it's yeah, it's yeah, it's yeah. It's unfortunate, but I do. We wanted the audience to know about what you were doing, and maybe they already knew about what you are doing, but we wanted to make sure that they did, because I think you're more important than ever in the role that you're playing now.

Debra Ruh: 23:59

And and you know what, Daniel, I did not know that nuance that you mentioned about why it was called the Washington. I did not realize that. I think I remember being one of those people thinking how come? I just did not know that nuance. Thank you for explaining that to me. I know that we want to and we'll do that real quick. We want to thank our sponsors Amazon, thank you. Thank you, mycleartext, for supporting this show. We're 11 years old. We really are grateful. But, Daniel, we also want to make sure. Can you tell the audience how to connect with you know the Center on Inclusive Policy. And also, Daniel, how do we work with your group? For example, would a corporation come to you and say, hey, we want to help get that? I mean, give us an example of how customers would come to you.

Daniel Mont: 24:50

Our website is inclusive-policyorg and you can get on there and you can see all the things we do. We're a non-profit, yeah, yeah, we. We, like I said, we really work to try to help develop policy information frameworks to promote inclusion. We work very much in the social protection, employment support, needs for independent living, improving data systems. Those are the areas we work in and if people are interested in, if people have ideas of things they're doing in that area that we can work with, or if they want to support us or just learn more about what we're doing, we'd love to be in contact with anyone who's interested in that in that area yeah, and we want you to come back on and talk to us more about this as it evolves, because I think losing the little bit of data that we had, that you know it's a little frightening, but, um, I also know we're all stronger together too.

Debra Ruh: 25:46

But, Daniel, thank you for being on the show. Will you tell us one more time what the email address I mean the URL is?

Daniel Mont: 25:52

Sure, it's inclusive-policyorg and you can contact us through there.

Debra Ruh: 25:59

All right, thank you so much and thank you to the audience. See y'all next.

Daniel Mont: 26:03

And thank you for having me.