AXSChat Podcast with Dr. LaMondre Pough, CEO of Billion Strong.

LaMondre is a motivational speaker, mentor, and professional figure in the area of people with disabilities. As CEO of Billion Strong, he leverages skills that enable him to inspire audiences to embrace diversity and create communities where people feel more welcome.

By his second birthday, LaMondre was diagnosed with spinal muscular atrophy, which compelled him to take steps to improve himself regardless of the incongruity, into new circumstances, and even in every situation.

LaMondre was recently inducted into the Susan Daniels Company's Disability Mentoring Hall of Fame, Class of 2020, for his commitment to civil liberties, social justice, and care for the disabled community.

Her belief is, "When people come together and learn about the world of individuals with disabilities, it produces a shared sense of trust, optimism, and unity for the whole community."

In disability communities, individuals with disabilities can give form to their personal stories, developing confidence. Focusing on experience is most significant when we can dive deep into our identities.

We all benefit from sharing our stories and informing others of what's going on globally. A great deal of progress has been made, but a lot more work remains to be finished.

Transcript

Neil Milliken  0:01  
Hello, and welcome to axschat. I'm delighted that I'm actually here this time to welcome LaMondre Pough to axschat. Third time here, only the first time that I get to speak to you. So third time's a charm. Right? So absolutely welcome back. Freddie, good to have you here. Apologies for my absence. So the monitoring your CEO of Billion Strong. So tell us a little bit about that. And you've also worked with Deborah as part of a global for for a long time. So you're part of the community. But but please introduce yourself again. 

LaMondre Pough  0:40  
Absolutely. First of all, it is great being with you, Neil. And and it's wonderful to be back. And thank you, thank you all for the opportunity to to have this conversation. I think that this is a very important space and a very important platform

LaMondre Pough  0:56  
for people to learn for people to express themselves and for people to communicate and continue the dialogue. around accessibility. I am the mind re pew I'm the CEO of Billion Strong, which is a global identity organization. By and for people with disabilities. Our aim really is to unite to elevate and to empower the 1.3 billion people on the planet with some form of disability. And our goal really, is to help develop a positive disability identity so that when we come together so that we can come together and effect positive change, to be a voice to connect the community. Could you imagine what kind of power and what kind of results we could get it 1.3 billion people on the planet came together and spoke as a unified group and spoke with a unified voice. Well, that is the audacious goal of billions strong, that is the

LaMondre Pough  2:04  
we actually have the gall to think that that's a possibility. And that we can be agents to help make that happen. So more than just an organization, it's really a movement. It's a movement of empowerment, it's a movement of empowering the global community of people with disabilities. So that's who we are in a really quick nutshell.

Neil Milliken  2:26  
Thank you, and please be a part of it. And so I think it's, it's audacious, it's big. I hope it's not too hairy.

Neil Milliken  2:38  
But it is something that we need to do. Because one of the the biggest challenges that we've had,

Neil Milliken  2:47  
is the fact that actually we don't speak with a unified voice. We

Neil Milliken  2:53  
don't really get the benefit of the size of our community because we are fragmented. So and I think that, that, that when we really do collectively speak, there's enormous power in that.

Neil Milliken  3:09  
But there is a challenge in, in bringing people together and getting that harmonized conversation. So

Neil Milliken  3:17  
more power to you.

Neil Milliken  3:19  
To make this happen, Deborah, I know you've got a question.

Debra Ruh  3:24  
I'm unmuting. First of all, and I know that they're very proud that you accepted. As you accepted. Be a board member Neil, I know you're really really, really too busy. And you're like No, no. Okay.

Debra Ruh  3:38  
So, so I know LaMondre really appreciate the leadership that you continue to show. And, and LaMondre I know as a CEO of Billion Strong, I was just wondering, when you were talking about identity, do you mind talking a little bit more about your lived experiences with disabilities from the different

Debra Ruh  4:00  
you know, from the different lenses? 

LaMondre Pough  4:02  
Absolutely, absolutely. 

LaMondre Pough  4:04  
Well, I am a person with a disability, I have spinal muscular atrophy, and spinal muscular atrophy. For those of you who don't know, it's a progressive neurological disorder that really does affect all of my activities of daily living, I can't walk, I can't bathe myself, I can't feed myself, I rely on attendant care services. To, to to live to live this beautiful life that I live and, and actually, it's, it's it's quite robust in terms of the services that I receive in the experiences that I have. Now, here's something when you talk about identity in itself, so often when we bring disability into the equation, we have a tendency to forget or minimize the other aspects of who we are. Because not only am I a person living with spinal muscular atrophy, I am

LaMondre Pough  5:00  
I'm a man living with spinal muscular atrophy. I am a black man, living with spinal muscular atrophy. I'm a black man raised in the southern part of the United States, with spinal muscular atrophy. And all of those things are a part of who I am not one of those things is the defining point, about lomandra, Pew are the identity of the Mondrian pew. But all of those things are a part of the identity of the mind, Dre, pew, and all of them, all of them shaped my perspective of the world. And also, they all shaped the perspective that the world has of me as well. And so often we say and believe strongly that identity is a two way street. It is not only about how, how the world sees you, but it's also about how you see yourself. So how do we show up? How do we talk to ourselves? And how do we show up to how do we show up to the rest of the world. So all of those facets are a part of it, and that's a part of what Billion Strong seeks to address is that we're not just looking at one aspect of a person, but it's bringing the entire person to the like, table, the person bringing their entire selves to the table. And, and, and really being honored in that regard.

Antonio Vieira  6:26  
So we're almost two years in the in the pandemic, know, that restricted our lives, you know, our movements, the services that we can access that we can access and the services that sometimes that we need, in order to take care of ourselves. Can you can you tell us from from your own, personal experience, but also from information that you might have read or information that you might have researched?

Antonio Vieira  6:56  
What what is the current scenario in terms of caregiving in terms of support, people are getting, problems that they face it over over the two years? Because I think it's very important for us to reflect on that. 

LaMondre Pough  7:09  
Oh, absolutely. It is. And that's a great question, Antonio, thank you for asking that. As I stated before, I rely on attendant care services, just to navigate my life on a daily basis, three times a day, I have people who come in my home, they get me up in the mornings, they help me get dressed, they feed me, then they leave, they work a bit, they come back into the middle of the day, they help me use the restroom, they feed me, and then they leave. And then in the evening, someone comes in, they help me my dinner, we do everything we need to do, they put me in bed, and then they leave. And this is how I live independently in the community by myself. Because of these beautiful people that come in every day. To do that, when twin Mar 2020 hit, I did not know how my life was going to look. Because we had this

LaMondre Pough  8:01  
thing in the air that completely threatened everyone's way of life.

LaMondre Pough  8:08  
But especially mine, my choice was either to move back home with my mother, and my family, or go into an institution. These were the two options that I was facing. And of course, the third option, though, was if people remain consistent and safe, that I would remain in my home and I could continue to be independent. Well, as I said, the entire world was put on pause. So for me, that was a tightrope walk in that I didn't know what it looked like. But let me tell you how dedicated

LaMondre Pough  8:47  
let me tell you how dedicated the people who really helped to help me in that part of my life are they showed up. They showed up every day. They showed up with gowns and masks. They showed up with new protocols. They showed up doing things differently, but every day they still showed up. So I didn't have to move back home. I did not have to go into an institution. I was able to stay at home. However, something else happened over the past two years. We know that and will for those of you who don't know, caregivers are grossly underpaid, grossly underpaid. I'll put it to you this way. You can work at a fast food restaurant. That's typically the first job for high school students and earn more than you can caring or providing the assistance that people need in their own homes. And let me give you a just kind of

LaMondre Pough  9:56  
overview of this.

Unknown Speaker  9:59  
Some of them

LaMondre Pough  10:00  
caregivers get reimbursed by insurance by, by governmental programs at a rate of about $10 An hour $10 An hour?

LaMondre Pough  10:12  
Well, some fast food restaurants are starting people at around $15 an hour. So when you think about it from that perspective,

LaMondre Pough  10:22  
it boggles my mind, how someone who has dedicated themselves to ensuring that I can lead a quality life cannot earn enough doing that work to provide a quality life for themselves.

LaMondre Pough  10:37  
And so this is one of the issues. So back to the pandemic, we were already struggling with that issue prior to the pandemic. But we also know that during the pandemic, a phenomenon happened. And that was called The Great resignation,

LaMondre Pough  10:52  
where people started leaving their jobs leaving their chosen career paths to do something else. Some of it was because they wanted to find more meaningful work. Some of it was because they wanted different work environments. But some of it was also because they recognize that they needed something that paid them more.

LaMondre Pough  11:19  
Well, the truth is, this is what has happened. And the homecare industry as well.

LaMondre Pough  11:25  
So before, you had an attrition rate of about 35 to 45%. Well, that's up to up to about 65% now. And so what has happened is that

LaMondre Pough  11:41  
even though it was a struggle before to find and maintain and retain

LaMondre Pough  11:47  
good talent, people who are dedicated, it's even more of a struggle now.

LaMondre Pough  11:52  
It's even more of an issue. Now, I have had literally, I have had to sometimes find my own attendance when I have an agency that's charged with doing that. But they are strapped so hard. They're strapped so tightly that they can't, and my story is not unique. My situation is not unique. And this is access chat. So a lot of times when we talk about here on ACCESS chat, is we're talking about accessibility. Well, let me tell you something, effective attendant care is a crucial element in accessibility. It is critical, and it is crucial.

LaMondre Pough  12:31  
And so

LaMondre Pough  12:34  
these things go hand in hand, and we cannot, we cannot be silent on this issue. We have to speak out about it. So I thank you for the opportunity to share on this platform. And that's been my experience. And that's what I've seen, honestly, on a global level.

Debra Ruh  12:51  
And LaMondre  let's talk a little bit about the negatives associated with caregivers during COVID-19. Because, for example, I know rosemary, our Chief Accessibility Officer who was she has cerebral palsy and needs around the clock support from caregivers and

Debra Ruh  13:11  
people didn't show up with the this you know, ice is covering the driveway, so they can't get in

Debra Ruh  13:19  
the the story that you told me one night LaMondre when you were laying in bed, something was crawling on you. But you know what? I was just wondering if maybe you would tell that story because it's things that we don't think about. So another thing with caregivers besides them being grossly underestimated, underpaid, undervalued, no benefits ridiculousness all over the world. We're all caregivers, we are all caregivers, all of us care for other people at certain times. But the you know, at the same time, people can't move into this field, even if they want to be in this field, because they can't afford it. And so some people just get in there just to make, it's just such a mess. And so, but let's talk about also some of the things that happen when the caregivers don't show up, or they show up like the one you recently had. And she told you what she said about somebody she was just with a few minutes ago before she was with you. Right? It's it's just such a big complicated issue. And at the same time, and this is something I know you were you want to take on with billion strong. How do you know what what responsibilities do employers have to support caregiving, but we have a major problem, I believe, I know that we have a major problem and that for lomandra to stay independent, which he wants. He has caregivers coming in and out which is great, but I would argue that it would be very supportive if LaMondre had caregivers all the time. And then he's going to tell us a couple of stories because the reality is

Debra Ruh  15:01  
You know, they, I don't know, there's so many realities that we're not thinking about when it comes to caregiving. And so I was just wondering if you would talk about just some of the realities that we walked during, you know, COVID-19, including society starting to understand why Teleworking is so important, and how lonely you can get things like that. So absolutely not.

Antonio Vieira  15:24  
Let's just give me a quick note here, we're talking about in the United States that are facing this situation. But I just want to remember that in many countries around the world, the work of the career, the is not recognized.

Antonio Vieira  15:43  
We know some people are all working for free or trying to help someone, I think it's important also to highlight this, no, we are two years in the pandemic, this has created a problem at a scale with uniuninimaugeable, consequences that have taken place.

LaMondre Pough  16:03  
 Absolutely, Anthony, and I'm glad you said that, because as I said, these, this, this is a global issue. You know, I am telling my story from the perspective of the US because that's my experience. But the truth is, it is global, and so many caregivers who who have,

LaMondre Pough  16:25  
who have to not only support themselves, and their families are taking care of people for free,

LaMondre Pough  16:32  
with no value associated with it whatsoever. And honestly, for a lot of flam families that plunges them into poverty, that plunges them into situations that had there been a little bit of support could have made the outcomes, so much different. So thank you for adding that. And that's why I say this is an issue that we have to hit head on, and we have to begin to talk about it.

LaMondre Pough  17:01  
In larger platforms, we have to begin to speak about it.

LaMondre Pough  17:06  
But some of the issues that that I have faced and and so many others.

LaMondre Pough  17:14  
So many others that I know face, is really because in many instances, the lack of the lack of compensation, there are people who, who would really love to do this kind of work. But as Deborah said earlier, they can't afford to. And the reason they can't afford to is because they cannot earn a livable wage in doing this now, that does not diminish the need. That does not diminish the desire to do it. But what does that do? Well, it opens the door to people who are only seeking to do this, because of the money. So in other words, it's hard to attract the best and brightest, when the best and brightest can't take care of themselves with it. So you get people who

LaMondre Pough  18:02  
and this biologics and I don't want to give this impression. But what ends up happening is you do get some people who are just kind of in it for whatever, it for whatever they can get any really don't care and they're not even professional. One of the stories that Deborah was talking about was there's a young woman who came to me one morning, she was a film and she was not one of my regulars. I call my regulars, the dream team, because I am extremely fortunate that they are amazing professionals who are excellent at what they do, and they're committed to it. But this particular time, I had a fill in, and I'm a generally happy guy. Okay, I that's just my disposition. I'm, that's just who I am. And one morning when she came in, I'm my happy self. And I made a joke. And she looked at me, she was like, how can you choke at a time like this? Am I thinking, well, it's eight o'clock in the morning. What do you mean that time like this? And she said, You're so smiling and so happy. I just found out at three o'clock this morning while I was with another client that he has COVID

LaMondre Pough  19:12  
I said what? And she was like, yes. And they didn't tell me. He has COVID right now. And I stopped and I said, and you're here with me right now. And she was like, yes, but don't be scared. Don't be scared. And my response to her was, I am not afraid of COVID but I am afraid of carelessness. So as soon as she got me in the right position, I said you can leave now. Because my thinking is my thinking is what?

LaMondre Pough  19:47  
How in the world? Do you come into someone's home? Who you have identified as yourself as being vulnerable to serious complications if they

LaMondre Pough  20:00  
contract COVID as a professional, how do you put that? How do you walk into a scenario and allow that to happen? These are the kinds of things. One of the challenges that that we faced during the whole COVID pandemic, was really how do i quarantine when I rely on people to feed me? How do I effectively quarantine? How do I effectively create a safe buffer zone for myself, when I have to have different people coming in and out of my home in order to do that. So as I said, we established some protocols and some things that would help protect in that situation. But of course, not everybody follows that. And so it has been an issue. I think that COVID Also,

LaMondre Pough  20:48  
I think COVID has also opened up some possibilities for folks that we did not realize before, as Deborah mentioned, the whole work from home thing, a lot of organizations and companies who said it couldn't be done, had to do it in order to survive. And the benefit of that, though, is that that that meant that there were there was a whole nother layer that could be introduced into the workforce that we'd always been there, we always said, This is what we could do and want it to do. But now companies saw a way to do that. However, without effective attendant care, it's still an impossibility for many others. And so when you start to look at what caregivers are paid, if they are paid, when you start to look at when you start to look at the need to value, the contributions of caregivers, it all plays a part of this, it all plays into it. So we have to find ways to increase the reimbursement rate or increase the pay for our caregivers. So that we can attract and so that we can retain those who are really committed and dedicated to this. And in addition to that, you have to realize that

LaMondre Pough  22:07  
institutions are getting, what do I mean by that? The monies

LaMondre Pough  22:13  
that could go to caregivers, in terms of those who are professional caregivers, and those who provide care for a family members, the institutions are getting the money for that nursing homes, assisted living facilities, they're getting it, and they can afford to pay their workers as if they're getting it. So the truth is, the money is there, is just allocated in the wrong areas or

LaMondre Pough  22:41  
the way that we choose to disperse it is what the issue is. And what we've discovered is you get better outcomes when individuals can remain in their own homes, you get better outcomes when individuals can be in the community. If you do that, we just have to shift priorities and make it a priority. 

Neil Milliken  23:00  
So it's

Neil Milliken  23:02  
there are differences between the national systems. But I'm

Neil Milliken  23:08  
just to give some kind of idea of the scale of unpaid care. So that the UK Government, which is way smaller than the US, they reckon there are around 6.5 million people acting as unpaid carers in the UK in any given year. And they provide care that is worth somewhere between 57 and 100 billion pounds worth every year. Right. So so that that those are, those are mind boggling amounts. These are COVID relief package.

Neil Milliken  23:47  
amounts of money. 

LaMondre Pough  23:49  
Absolutely. 

Neil Milliken  23:50  
And the government's getting this for free. But they're not getting it for free because it's detracting from society. Because the people that are the unpaid carers are no longer tax paying, or able to take in more different jobs that they

Neil Milliken  24:08  
care is a valuable thing. You've been really clear about that. And you've been loose, and absolutely,

Neil Milliken  24:18  
but they may not be the best place people to give that care and then maybe better place people and they may have more to give in another way. 

LaMondre Pough  24:25  
Absolutely.

Neil Milliken  24:28  
So by creating any care as economy that is fair, and equitable, we are actually going to create a more profitable economy as a whole for society. So

Neil Milliken  24:45  
it's really trying to get that that sort of concept across to the people that are making the decisions about how the money is spent, because they will get more revenue but it is definitely a case of spending money to make money and and the mindset of a lot of

Neil Milliken  25:00  
Politicians, and bureaucrats, no matter where they are in the world is saved money. 

LaMondre Pough  25:06  
You know, what's interesting about that, Neil, is because it is a very nuanced conversation, right? And when we think about what it is not just, oh, it's just gonna cost us so much money to do that, well, it's already costing us so much money to not do it. Number one. And as I said before, for the most part, the monies are there, they're already there. It's just how we choose to allocate them, and how we choose to prioritize them. So it's, it's very nuanced, and it has, we have to look at it from multiple perspectives, as opposed to just I was gonna cost us this, but look what it's already costing, the quick look at what it's already draining from society to not do it. Yeah. Yeah. And it's worth to, it's worth to note that artificial intelligence is not going to solve the caregiving problem, we know that we've learned that as society, we, we've talked about this on air before, but we created an artificially artificially ai, ai seal, that was going to help with loneliness with seniors. And what they found was they gave this little toy that had artificial intelligence to senior citizens, and they would be sitting in nursing homes, they, they were trying it out, and other people would be fascinated by the seal. So they would come over and start engaging with the person that was holding the seal. So the seal did not take away the loneliness, but it was the reason why it caused the people to engage with each other. So artificial intelligence is not going to solve the caregiving problems. But that is going to be one jobs that we know will be here, it will be here, caregiving for other human beings will always be there, artificial intelligence can't take care of that. So we really need to pay put a lot of effort into solving these caregiving problems, because these should be considered professional jobs that we really appreciate. And I also wanted to mention, often family members have to stop working because they have to care for somebody, I'm in a situation where my husband, his needs around the clock care, and I have help. And I still am struggling to get worked on and sleep and things like that. 

Debra Ruh  27:26  
So go ahead. No, I know you have a comment. 

Neil Milliken  27:30  
Yeah. So I I fully agree, we're not going to end up replacing carers with robots anytime soon, there will still be a need for human to human care. At the same time, I do think that there are things that technology can do in terms of home automation, that allow people that have relied on carers to do simple things, to do those things for themselves. And to, you know, for the Mando, for example, you know, you could set up a whole bunch of home automation stuff where you previously maybe waited for your carrier to come in at certain points in the day. And if you're the home automation, right, you can now do that independently at a time of your choosing. So there are, there are things that technology can improve, but it's not going to solve everything. And I tend to be nuanced about that. Because I think we either say, AI is going to make everything better, or AI is going to destroy everything and tear it down. And it's It's neither black nor white. 

LaMondre Pough  28:30  
Right. And I will tell you this, and I I agree wholeheartedly with that. In fact, I use home automation all day, every day. I do so but I have never had my Amazon Echo, give me a bath. It's never happened. It does not know how to season my food the way that I like it. It didn't happen. It can't tell me good morning, in a way that's connected and human. He can kind of simulate some things, but it doesn't happen. In fact,

LaMondre Pough  29:02  
the conversations that I have with my Amazon Echo pale in comparison to the connection that I have with the humans who really do care and love me. So yeah, you're right. We can rely on technology for some things. But caring comes from person to person. And that's what's essential. That's what's needed. Yeah, I again I agree and by the way, I would not recommend taking an electronic device into the bathroom. Do not take your Alexa into the bath with you

LaMondre Pough  29:40  
oh well I won't thank you for that I

Debra Ruh  29:44  
I think that they have versions that are

Neil Milliken  29:48  
probably you know, people people have been taking their you know their waterproof mobile phones in but forgetting that they're on the charger and then electrocuted themselves because the Chargers not waterproof

Debra Ruh  30:00  
No, yeah, I mean, winning the Darwin Awards. 

Neil Milliken  30:04  
Sobut point taken and also, it's not just about the physical nature of the care, you're right. It's about the the human human Connect. That's super important. And the the mental health benefits of being able to see people we know from statistics that have been gathered by by the UK and one of the few things that UK remains good at is connected statistics gathering on health, right? We know that loneliness is really bad for you, it has the same kind of deleterious effect on your health as smoking five to 10 cigarettes a day. So

Neil Milliken  30:48  
it's not just about the fact that someone's coming in cooking your breakfast, helping you get dressed, it's also keeping you smiling and upbeat and connected to the world that, that that's such an important part of the role that your your dream team plays and the dream teams around the globe play right? 

LaMondre Pough  31:08  
And honestly, yeah, we do. And honestly, I do the same for them. I do the same for them. It is a true exchange. One of the things that I've learned about this kind of relationship, yes, it is a very professional relationship. But it is more than a job relationship, as well. Because think about it, you are coming into my environment, my home, not an institution, not, you know, it's my pictures on the wall. It's my artwork, it's it's it's it's my cologne, it's, it's all of those things that say who the mind, Dre Pugh is, and you're interacting with me, you're doing the most intimate of intimate things for me. And in that, in that situation, there is a connection that goes beyond the physical. That's why it's important to match. That's why it's important to have a good fit. Because there is a connection that goes beyond physical connection. And whenever you see those relationships blossom, whenever you see that when it's a good match when it's a good fit, lives change. And it's not just the life of the person receiving the care that's enhanced, but it's also the person who's providing the care, your life is enhanced as well. So it honestly goes far beyond just the physical dues.

Debra Ruh  32:36  
The major, yeah, I know that I know that we've got it, we've got to close. But another thing that I know that you want to take on strong is, you know, supporting employers, helping employers understand the caregiving part of this puzzle. And it's it's so complicated, everything's so complicated, but But employers also are part of this. And so another reason why we're so glad that people like Neil agreed to be on your board, because you need the professionals that are doing it. So we I mean, this is very complicated, nuanced,

Debra Ruh  33:14  
in each country, so you try to look at it. Yeah, it's a complicated, complicated thing. But it's important that the community speak for themselves. And that's why it's so important. We do have a carers network within within our organization. So so.

Neil Milliken  33:33  
So we, you know, we one of our employees, networks is dedicated to to carers.

Debra Ruh  33:41  
How many I don't know how common that is. I've never heard of that. Not that.

Neil Milliken  33:48  
I mean, I think when you say to us, yeah, we look at some of the, the employee benefits and the networks that we have, it's, it's pretty impressive. So, you know,

Neil Milliken  34:02  
there is a will to recognize the humanity of our influence.

Neil Milliken  34:08  
Because we are part of a collective so I know we have to close so.

Neil Milliken  34:14  
It just remains for me to thank Barclays ASccess Microlink. And the great people, My Clear Text, for keeping us on and captioned the monitor. It's been a real pleasure. We'll talk again soon. orgy joining us on Tuesday for access chat. Thank you very much. 

LaMondre Pough  34:31  
Thank you. Thank you.