Demystifying disability benefits, money and employment with DB101, feat. Nicholas Love

Navigating Social Security and Medicaid benefits can be overwhelming, especially when considering employment. In this episode, we dive into the Ohio Disability Benefits 101 (DB101) Integration Project and how it is helping people with disabilities understand their financial and employment options.

Nicholas Love joins the conversation to share insights about DB101, employment myths, and the importance of financial literacy. He challenges a common question—"How much money can I make and not lose my benefits?"—by flipping the script: "How much money do you need to live the life you want?"

Host: 

Shari Cooper, Ohio Developmental Disability Council Ambassador 

Guest: 

Nicholas Love, Director of Community Inclusion at the World Institute on Disability (WID)

Key Topics 

• What is DB101? A website offering clear, accurate information about Social Security benefits, healthcare, and employment.
• Employment Myths Debunking fears about losing benefits when working and highlighting available work incentives.
• Ohio’s Role Why Ohio, as an Employment First state, is leading the way in disability employment initiatives.
• Financial Education & Resources How DB101 and the Ohio Developmental Disabilities (DD) Council are providing tools like financial literacy training and ABLE accounts.
• Competitive Integrated Employment The push to eliminate subminimum wages and ensure fair pay for workers with disabilities.
• Outreach & Training How WID and DB101 are reaching individuals, families, and providers to educate them on disability benefits and employment.

Why This Matters

Employment is not charity—it is about equity and opportunity. DB101 is helping thousands of people each month make informed decisions about work and benefits, proving that financial stability and employment go hand in hand.

Resources & Links

• Learn more about DB101 Ohio
• Watch the DB101 informational videos (make sure to select the Ohio-specific videos)
• Ohio Developmental Disabilities Council

Have a story to share? The Ohio DD Council is looking for individuals to feature on the podcast. Submit your story!

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Transcript

[Shari Cooper]
Hello, hello everybody, it's your girl Shari Cooper again, coming at you with another episode of DD Talks. If you are listening to this and you are part of the disability community, you probably know that Social Security and Medicaid benefits can be very complex. And it gets even more complex when you add in employment.

So today, we are going to answer an age-old question, how much money can I make and not lose my benefits? Well, the answer may surprise you. Our guest today, Nicholas Love, who is the Director of Community Inclusion at the World Institute on Disability, actually answered the question with another question:

"How much money do you need to live the life you want?" 

Join us for this great conversation with Nicholas and Lara about the Ohio Disability Benefits 101 Integration Project is making the benefits and employment topic easy to understand and navigate. 


Hello, Nicholas!

[Nicholas Love]
Hello, Shari. How are you today?

[Shari]
Thank you so much for joining us. I am great. Can we start out by you introducing yourself?

[Nicholas]
Yes, my name is Nicholas Love. I'm the Director of Community Inclusion at the World Institute on Disability. We are a disability-led organization for the last 40 years, founded by Ed Roberts, Judy Heumann, and Joan Leon, the founders of Independent Living, the fighters of the ADA, and all our civil rights of us with disabilities.

[Shari]
Wow, when you talk about Ed and Judy, you're talking about some real advocates. 

So what a pleasure it is to have you here today. Can you give the crowd one thing they should know about you?

[Nicholas]
About me?

[Shari]

Yes, what's one interesting thing people should know about you?

[Nicholas]
Well, I am a person with a disability. I was born with a disability. But yet, I did not even claim my disability until I was in my 40s because of stigma.

And I thought, well, that's just ridiculous. And so now I'm a very proud advocate of being a person with a disability and a parent of an adult child with a disability.

[Shari]
Wow, what a great thing to know about you. Thank you for sharing, Nicholas.

[Nicholas]
You're welcome.

[Shari]
So what is the Ohio Disability Benefits 101 Integration Project? How is the World Institute on Disability involved?

[Nicholas]
Okay, well, the Integration Project for the Disability Benefits 101, or DB101, we're going to start with what is DB101. It is a website that was created by the World Institute on Disability in 2002, originally in California. And it is there to help answer the confusion and questions about Social Security benefits, health care, independent living.

It's a way to get real and accurate information for anybody who wants to learn about what will be an impact on their benefits when they go to work. And so the Integration Project through the DD Council in Ohio is to be able to implement DB101 fully, to be able to do trainings, and to be able to do some research. So we've gotten several grants from the DD Council that has continued to build upon each other.

[Shari]
What made the Institute decide to apply for the Ohio Developmental Disability Council grant to support DB101?

[Nicholas]
So I live in Arizona, and Arizona received DB101 in 2011, and I fell in love with it. As a benefit counselor and someone who has provided direct services for all types of disabilities, I found it to be something that can get rid of those myths about Social Security, the belief that if I go to work, I'm going to lose my benefits or be worse off. And so when we got in Arizona, I fell in love with it, and I started to encourage other states to use it, including Ohio.

And that was even before I started working at the World Institute on Disability. So when I was recruited over to continue to spread information about benefits and to implement DB101, we thought that Ohio, being a very strong Employment-First state, would benefit from additional trainings and information about benefits on DB101 and the expansion. So we applied originally to help create some of the videos that are on DB101.

There are several animated videos to help people understand the complexity of benefits in a little short video. And then we used that money to start looking at financial education in Ohio. And we did a project for that that led to adding Ohio being the only state that has a full section on financial literacy and education that not only directs you back to your own state services, because they're so siloed.

You go to one place, find the information. It also provides national information. 

And then we decided to use the money (you guys have been so gracious with money), we used the money to be able to do some research about how our benefit plan is being implemented in Ohio and employment services and wrote a white paper for you. And now we're implementing the recommendations of that white paper by continuing educating and by adding some additional articles, hopefully, on employment.

[Shari]
So you mentioned Ohio being an Employment First state, which I am so proud of. But for the people who don't know, can you explain what that means?

[Nicholas]
Yes, Employment First is a philosophy. A lot of people think it's a service. It's not.

It's a philosophy that all individuals with disabilities should have employment as their first daily activity. Which means, instead of going and sitting on a couch and doing nothing, to help people with disabilities find their true gifts and their talents so that they can go to work—so that the belief structure that all individuals have the ability to go to work, no matter what their disability is, with the right resources and supports, just like everyone else without a disability. And they should be making the same amount of money, if not more. Above minimum wage money.

[Shari]
Love it, cuz, you know, we need our money. We got things to do and places to go. So who else is participating in DB 101?

[Nicholas]
So in Ohio, DB 101 is being funded by the Ohio Division of Developmental Disability. And so, with the DD Council support, we are able to really help everyone. We open up these trainings to everyone.

So any provider who's out there wants information, we get some focus groups for parents, as well as people with disabilities, to be able to understand what they wanted. And it was interesting, we found out that there was a disconnect between people getting accurate information and what the providers knew. And that information that the providers knew flowing down to the people where it matters, the people with disabilities.

[Shari]
That's some great information people need to know. And I'm going to follow up with another question. What are the most common reasons people with disabilities aren't working in the community?

[Nicholas]
One of the big reasons is if someone is receiving Social Security benefits like SSI Supplemental Security Income or SSDI Social Security Disability Insurance, they had to go through hell basically to get the benefits. It's one of the hardest things to get on, right? And so there's a fear factor that if I try to go to work, I'm going to lose more money. I'm going to lose my health care. 

And these are not realities. These are myths that have been carried on and on and shared by even the professionals in the field.

So we want people to realize that there are things called work incentives, that are rules that Social Security created that allows people to go to work and actually make more money and keep their health care. So one of the videos that we created with the council's money was on Medicaid buy-in, which allows individuals who receive Medicaid but go above the Medicaid limit to buy into Medicaid for a cost. And it actually helps them keep their Medicaid, the long-term services.

And even if you're on SSDI and get Medicare, you can apply for Medicaid buy-in. So we created videos to explain that on DB101. 

And so the biggest myths are I'm going to lose my benefits. I'm going to have no money. I'm going to have less money. But DB101 lets people go through and do a personal scenario.

How much benefits do I get? What job do I want? How many hours and at what pay?

And it shows what's going to happen to your benefits and how you could be better off going to work, and get rid of those myths. And most people, especially if you're on SSI, are going to be better off by going to work and be able to maintain that Medicaid.

[Shari]
And I just want to make sure, you keep mentioning the video, we'll assure listeners we will have links to the website so you can see the video. Because I have watched the video and they are very informational. So be assured you will see a link so you can get to the video.

My other question, which I have a follow-up to, why is this project important for the disability on a national scale? And why is it important to you personally?

[Nicholas]
So it's important on a national scale for several reasons. We need people with disabilities to go to work. Because without employment, people, as you said, you've got things to do, places to go, right?

Well, you can't do that if you don't have money. If you don't have the money, you don't have the ability to make your personal choices, right? You don't get to decide where you're going to live, if you're going to eat, or how you're even going to socialize because you're broke, right?

So if someone is receiving SSI, they're receiving money that's actually 25% below the federal poverty level. That's horrible. People should not live in poverty because of our disabilities.

So on a national level, it's about leading people into the truth and reality that people with disabilities can be employed, should be employed. And it's not a big expensive thing or charity. And that's one of the things currently happening nationally is a belief structure that hiring people with disabilities is a charity.

It's a good thing to do. It makes you feel happy and warm. Nobody does anything to feel happy and warm, right?

It's about how to help people with disabilities get entry to the same positions as people without disabilities, to have a competitive integrated environment, employment, so they can have their lives. And what that does on a national level is it changes our culture. It shows the worth of people with disabilities.

And by showing that worth of people with disabilities, it allows us to proceed and progress to get more independence and to live our lives as we should. That's a national thing. And Ohio is looked at very much as a leader in Employment First belief structures.
So we want to make sure that Ohio is leading the way in the discussion. 

Personally, I am a advocate. I am somebody who has always fought for people with social justice and equity, you know, and so that's under attack currently.

And we want to make sure that people don't realize that disability employment is not a DEI — hope that doesn't get anybody in trouble for those initials — issue.

It actually is a merit based issue. It's just opening the door. And for me, that is very important because no one should have to live a life less than they deserve and want simply because we were born or achieved a disability.

[Shari]
And what you said, it sounds so simple and people just don't understand it. And you're right. It's not a charity.

It's just life. We want to work. We want to make our own money. Just everything. 

It's great. So Nicolas, another question is, are more people with disabilities working because of this project? And what effect have you seen so far in Ohio and beyond?

[Nicholas]
So one thing about DB 101 that makes it really special is that it's a safe harbor. You don't put any personal identifying information in. So we don't track people.

So we don't have a number to say this is how many people have gone to work. Right? We can do, anecdotally, saying that we know that if people receive information that is accurate, they'll go to work.

It's hard to make a decision if you have bad information or no information. What we can say is on an average, there is over almost 4,000 people a month using DB 101 in Ohio. So that means people are getting the information.

And we have shown repeatedly that if people get benefit planning information earlier in their services and their lives, they do better. They have better outcomes. So it's an evidence based practice, meaning it's been proven.

If you give people accurate information, they actually can act upon it. So that's what it's doing in Ohio. And again, that spreads over.

There are 15 states, soon to be 15 states, that have DB101. Not everybody has it. So it's really fortunate for Ohio to have it.

And then others watching what Ohio and the other 14 states are doing leads to more people wanting the information and having the accurate information.

[Shari]
How does DB101 and the Institute address Competitive Integrated Employment?

[Nicholas]
Actually, we have another grant from the DD Council that's not related to DB101. And it is learning and doing research on the impact of the elimination of subminimum wages or 14C certificates. Which means people who have disabilities are working in these shelters employment where they're making sometimes only pennies on a day.

You know, it's just it's ridiculous. And so we're doing research to help people realize that the impact of getting rid of a 14C subminimum wage allows for people to have competitive integrated employment. Which means people with disabilities are working in jobs with other people without disabilities, earning the same amount or more with people without disabilities.

So it's competitive, it's integrated, it's all together. And for us, that is really where it's important. Is, again, we don't want people making less money.

I mean, if you're working and you're doing your job, you should be making the same amount of money as anybody else doing that job. And by giving people with disabilities lesser money, it says we're lesser people. And we're not, right?

We are equal to, if not sometimes better than, somebody else who may not have a disability. Because us having a disability has taught us unique skills to be able to navigate a world that was not created for us. And employment is one of those things.

And a lot of people think that integrated employment means accommodations, expensive accommodations. It doesn't. People with disabilities can go to work with either no support at all or some simple support.

But everyone with or without a disability gets support on the job, gets support in their life. Nobody lives truly independently.

So for competitive integrated employment, we think that is the way to actually show the world that the 1.3 billion people with disabilities global-wide have worth. And to me, that's through Competitive Integrated Employment.

[Shari]
I have read a lot of studies where workers with disabilities are more reliable, more on time, more steadfast, because we know what it took to get our job. So we've got to work extra hard, not only to get the job, but to keep the job as well.

[Nicholas]
Yes, because first off, there's a lot of false beliefs about us with disabilities. And so we are a little bit more determined to show that we have our worth, because we've been told we don't. So we fight.

[Shari]
Right. And fight, and fight, and fight. 

Another question for you.

What outreach strategies are you using to connect with the Ohio disability community to educate them about DB101?

[Nicholas]
We've done some focus groups for families, people with disabilities, and providers. And we do these trainings. With the DD Council, we have two trainings that we're going to be doing that are open to everyone.

And we share this information through the Council, who has been really great in getting the information out. We share the information through the Department of Developmental Disabilities and through Ohio APSE, Associations for People Supporting Employment First. And we've been getting some really good responses from that.

And even though this DB101 is being funded and supported by the DD community, it is for all types of disabilities. It's not just the DD community. So it's offered and open to everyone.

[Shari]
That's great. What's the most common question people with disabilities ask regarding work and their benefits?

[Nicholas]
So there's always this belief that you can only earn so much. That's a myth. So people always ask, how much money can I make?

And I always respond with, how much money do you need to have the life you want? Let's start there and figure out what you need to do that. Because I don't want people to be limited because they think they can only earn a certain amount of money.

No, you can earn as much as you want. And you can figure out and you can get supports and information and resources, just like everybody else. So that's the big question.

How much can I make? How much do you want?

[Shari]
I'm going to remember that. How much can I make? How much do I want?

Oh, that's a loaded question. Yes. I really like that.

And my last question for you is, what does the Ohio Developmental Disability Council funding mean for this project?

[Nicholas]
It means everything to this project. We would not have been able to expand the videos to people who learn differently to be able to see and understand about benefits and going to work and about, oh, we did a whole video on ABLE accounts, right? How you can set aside money and save, right?

People don't think they can save money. Open an ABLE account, people. They are really, really good.

We wouldn't have been able to do the research to be able to add in financial education. We wouldn't have been able to train hundreds of people. So the money from the DD Council is so important.

And the DD Councils around the country have always been so supportive of DB 101. And so Ohio, I feel when WID starts a relationship, we make it a partnership. And so I really feel a strong partnership with the DD Council.

And I don't just take their money for granted. I want to make sure that that money is being utilized to help Ohioans with disabilities get what they need and deserve and live the life they want. So it's very important to me.

And I really value and honor that relationship.

[Shari]
Well, Nicolas, thank you. Your information has been amazing today. I appreciate you taking the time to speak with us.

Is there anything else you would like to add?

[Nicholas]
No, I just really appreciate you and the opportunity to share this. And just, if you don't know about DB101, Disability Benefits 101, in Ohio, just go and play with it. It's open to absolutely anyone with internet access.

It's fully mobile responsive. Get it on your phone. Just play with it and find out what you really can do with your lives.

So that's what I hope.

[Shari]
Well, there you have it, people. We had another great episode with the amazing Nicolas Love from the World Institute on Disability. You can learn more on our website at ddc.ohio.gov. Oh, and one more thing before we go. The Ohio DD's Council is collecting stories to highlight on our podcast. You might even be invited to appear on the series. Are you interested?

Complete a short online form using the link in our episode description. We can't wait to hear from you. I've been your host, Shari Cooper, your girl, you know, so I'm out.

I'll see you on the next episode. Have a good day. Bye.