More Than a Paycheck: Employment, Purpose and Opportunity for People with IDD

Employment is about more than earning a paycheck. It can provide purpose, independence, connection and the resources people need to build lives of their own choosing.

In this episode, host Jean Winsor, Senior Research Associate and Project Manager at the Institute for Community Inclusion (ICI), talks with self-advocates Sarah Carmany and Molly Kirkham about what meaningful employment looks like for people with intellectual and developmental disabilities. Drawing on their own work experiences, Sarah and Molly discuss choosing a career, being valued for their skills, receiving equal pay and working alongside people with and without disabilities.

The conversation also examines the barriers that continue to limit employment opportunities, including ableism, low expectations, subminimum wages and the “benefits cliff.” The guests discuss ABLE accounts, person-centered planning, workplace accommodations and the importance of setting measurable goals for expanding competitive integrated employment.

Above all, Sarah and Molly offer a clear message: People with disabilities want to work, contribute to their communities and be recognized for what they can do. They need employers and support systems willing to give them the opportunity.

Transcript

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Michael (intro) 0:00

This is the 35 Years of Community Living Podcast. From data and storytelling, we explore how community inclusion has shaped the lives of people with intellectual and developmental disabilities across the country. It's a story of how policy, data, and real life intersect and why community matters for all of us. Thanks for listening. Let's get started.

Jean 0:33

Hello and welcome to the 35 Years of Community Living Podcast. My name is Jean Winsor, and I'm the principal investigator of the Access to Integrated Employment Project at the University of Massachusetts Boston. For over 35 years, we've been working with state intellectual and developmental disabilities agencies to track and report back on employment services and outcomes for the people that they serve. Employment is a cornerstone of community living. It provides purpose, money to do the things that we want to do and to live in our communities, and it supports an improved quality of life for people with intellectual and developmental disabilities. We know this from many data points, and we see that when people have money to spend on their own, they are happier, they have better mental health outcomes, and they are able to purchase things that bring joy to their life, but also to take care of their basic needs like housing and transportation and healthy foods. Today I'm joined by Sarah and Molly, two colleagues and members of the 35 Years of Community Living Council of Advisors. I'm gonna take a moment and ask Sarah to introduce herself.

Sarah 2:03

Hi, my name is Sarah Carmany. I am a white female with red hair, and I live in Kalamazoo, Michigan, USA, and I have uh autism spectrum disorder, which is my primary diagnosis, along with bipolar 2 disorder as my secondary diagnosis.

Jean 2:30

Thank you, Sarah. Molly, would you like to introduce yourself?

Molly 2:34

Sure! So hi, I'm Molly Kirkham. I'm 26 years old and I live in Colorado, and I have been at self-advocating involved in the disability community for many years. My disability is the 7p21 Deletion Syndrome, but I go by (???). Most importantly to know is I'm a self-advocate and I'm excited to be here.

Jean 3:03

So, we're often asked why employment for people with disabilities matters. Employment for people with disabilities matters from my perspective because it is a cornerstone of what adults in the United States are expected to do as part of their daily living. I think one of the first questions we often ask one another when we meet somebody new is hey, can you please tell me about what you do for work? And when people with disabilities are not working, they're not able to make that- to respond to that question. And it really creates a barrier to them developing relationships with others in their community. It's also incredibly important from my perspective because we need money to do things. It's, if I want to go to the movies, if I want to go to the grocery store, if I want to go on vacation, if I want to pay for a rent or my mortgage, I need money to do that. And that's a really common reason that most people work. So when people with disabilities aren't able to do those things and have control over their own money, they're not able to make decisions about where they work, where they live. They're not able to make decisions about where they shop or the kinds of leisure activities that they engage in. So, from a researcher's perspective, that's some reasons that employment is important for people with disabilities. But I'd like to hear from Sarah and Molly and their perspective on why employment matters. And Sarah, would you please start?

Sarah 4:59

It matters because people are giving back to their community when they work in the community. Being a person with lived experience, I have been employed. Because I know when I was on when I was growing up, my parents taught me and my brother to always work for what you get, to never be on a dole system, but apparently, I'm kind of- I'm kind of getting social security, and I didn't get social security until I got older, til I was an adult. And then when I got social security and I did work, they said I could work, and then I worked with local agencies here to put together a housekeeping business that I've had from 2009 all the way till 2022, and my self-employment was cleaning houses, and I was doing residential and commercial cleaning, and I always kind of enjoyed that. Also, when I first started, I did kind of housekeep before I really got the jobs I got. And I also, back in high school, I also did vocational rehabilitation where I went to hotels and cleaned houses- cleaned hotel rooms with with people that were working there, I was like job shadowing. So I also did that.

Jean 6:40

That's a really great point. The role of education and training is really an important part of helping us to be able to do the work that we do, and also to help us know if that's the kind of job that we want to have. You could have gone through those experiences, Sarah, and been like, "I don't like this. I don't want to start my own housekeeping business."

Sarah 7:05

And then I know that when I was in young adult program, my post-secondary, I also did a rehabilitation- a vocational thing with children. Where I would go into a classroom and like interact with young kids.

Jean 7:25

Did you like it?

Sarah 7:27

It was okay.

Jean 7:30

(laughs) It wasn't your thing, and that's I think important information to know.

Sarah 7:34

When I got employed to my current job at the ART Community Advocates, which is my local ART chapter, Social Security and Medicaid /Medicare wouldn't let me keep two jobs, so I had to give the housekeeping job up. And going back to my self-employment, I have been a taxpayer because I've always filed taxes, and sometimes when people don't work, they can't file taxes if they don't have a job. And so basically, that's another key aspect is being able to contribute to to sustain me and my apartment. So actually, in a way, I'm a taxpayer and I do pay for my share of my apartment too. And not only that, but the reason why employment's important is so that we can, like Jean said, to buy stuff because every aspect of our lives we have to pay for everything. And when you live on your own, you don't have mom and dad to rely on all the time. And so some people need a job and be able to save. And I know currently with Social Security, Medicaid/Medicare, or with Social Security, I know we can't have over $2,000 in the bank, and I know that's kind of a problem to help us save for like buying a house or getting a car.

Jean 9:17

Sarah, those are such great points. I love how you talked about you being an entrepreneur and starting your own housekeeping business. I also really appreciate you talk about the importance of being a taxpayer and wanting to contribute to our community and our government. I think that's an incredibly important piece. I think there's a saying about um, you know, there's one thing you can always count on is death and taxes. And I think, you know, that's a very universal sort of cliche that we as adults use in the United States. And, you know, I appreciate you illustrating that. The other piece that you talked about, and I know we don't have time necessarily to delve too deep into this today, but about the challenges when you want to be able to expand your income and the fact that there are certain regulations like only being able to have a limited amount of money in your checking or savings account that can make it really hard to do those things. So I appreciate I appreciate you sharing those thoughts.

Sarah 10:34

And I know we also have the ABLE accounts, but well, I've talked with legislators and others in different agencies, and they seem to just agree that the ABLE account shouldn't be the only way that people can save money. But I know that if I work and I start getting it up there, my caseworker said, remember, you can't have over $2,000 and my payee too, because I also have a rep payee that helps me budget out my funds too.

Jean 11:12

Yeah, I completely agree. You know, I think all of us in the United States really want to figure out ways to maximize our economic status and place. I'm so glad that you've been able to talk to lawmakers and policymakers about those things. And before I turn it over to Molly, it's just a reminder to me about why it's important to collect data on employment outcomes. It's important to know how much money people are making and be able to support them to not only make more money if they want to, which that was something that you clearly valued, but also be able to save money so that they can plan for their future. And I'm gonna turn it over to Molly now. Molly, can you talk a little bit from your perspective about why employment matters?

Molly 12:09

To me, the reason employment for this way matters is because it's giving value to the person. To me, it's saying that you do matter, and that's why it's important to me is, if I didn't work, I don't know if I would have a purpose. And when you don't have a purpose, you feel lost. So that's it to me, it's about not feeling lost and knowing what you do. For me, employment has always mattered. I have always been told, you know, that if you can work, do it, so I always- and also I like to keep busy. So for me, work kept me busy. So my first job when I was young was as a camp counselor with the YMCA. My second job, I was a courtesy clerk at Safe Faye throughout high school. After high school, I worked at UC Health as a receptionist for the medical field, so I answered calls, took notes, send a doctor. And I was the first one that they ever hired at the job with a disability, which I thought was cool. But also interesting because it was a process and them learning how to interact and also really accommodate and value and help someone with a disability in that field. And right now I currently work at the Arc of Colorado. I'm a legislature and policy advocate. So like trying to pass bills, talking to legislators. But to me, the reason why I think work is important is it gives you a purpose. Something to be fulfilled. A lot of times I think people think work is just something to pay the bills or to, you know, save a job, but to me it goes beyond that. It gives you- it lets you contribute, and it gives you purpose. It also gives you that opportunity and responsibility. To me, I think if you don't have something to do or you don't have a job, you can kind of be stuck and not move forward. That's why I think this is important. It's not just because people want to work, but really gives you that opportunity to go past what's possible and gives you that value of that you are needed and that you do have that skill. So again, work is important to me because of all those things. But most importantly, I think if I didn't work, I wouldn't know what I could do and how I could do it. I mean data is important because it shows what you can do, but it goes beyond that. Again, when you feel like everyone else is having a purpose and you don't, that makes you feel different. But the job gives you that purpose and allows you to give you back to that community. So that, to me, is the most important thing is the independence and that human part.

Jean 15:10

Thanks, Molly. I love that. I also really appreciated how you talked about the different types of jobs that you've had over the years. You didn't start as a legislative liaison with the Arc of Colorado. You had lots of different types of jobs over the past several years that helped you craft who you are and and help you learn about yourself. I will just say I think you probably have a job that so many of us started with when you mentioned you were a camp counselor. I think there are so many people that I know, particularly in our field, who got their start as a camp counselor, as somebody who cared for children. And it gives me something, you know, when I meet somebody new to talk about, to be able to say, oh wow, like we had a we had a similar start in this field. I also really loved how you talked about purpose. You know, having a job, you know, helps to give us purpose. It is part of our routines. It helps us to get up every day, start our day, have our breakfast, have our coffee, go into work mode, interact with our colleagues, and then you know, we end our work day and and then move into our personal life. But that purpose is incredibly important because I'm not sure what I would be doing during the day if I wasn't working. And sometimes when I reflect on that, I really, you know, wonder how different might my life be if I didn't have an opportunity to work and I wasn't working. So I appreciate your focus on that. So our next header is what does real employment look like? And I'm gonna give a little bit of a description as to why we ask, we're asking that question. Competitive integrated employment is the term that has been used for many years at the federal level to describe the intended outcome of rehabilitation and Medicaid services and supports that lead to employment for people with disabilities. But it sounds like it's a little bit of a complicated term sometimes. And the reason for that is because it has different parts, three different parts. There's the focus on being competitive, there's the focus on integrated, and then there's the focus on employment. When we talk about the competitive part, we mean that anyone in the community can apply for the job, whether they have a disability or not. It means that people who are hired for that job earn the same wages and have the opportunity to earn the same benefits and hopefully work the same hours as people without disabilities. When we talk about integrated, we really mean any job that exists in our traditional communities. So again, getting back to the fact that anyone could apply for that job: it means a job - and you've both Sarah and Molly given some great examples in hospitals - it means a job for a camp, it means a job in early education, it can mean a job in a supermarket, it can mean a job in a nonprofit, and it can mean a job in a business, any of our business, any type of business in the community. I often you know think about there's so many jobs that I don't even know exist. And so when we talk about integrated, that's really what we mean. It is a job that anyone can have in the community and that exists in the community, in a business that is for profit or not for profit, but that is part of our regular business environment. And then I feel like sometimes people think the term employment, it should be easy to understand. But for many well-intentioned reasons over the last 50 years, as people have moved out of institutions and into their communities, we've created programs that are housed within community rehabilitation providers with the intent to provide training to people with disabilities so that they can go work in the community. What the data tells us, unfortunately, is that a lot of people got stuck there. There was never any way to help them move out into a job in the community. Their job was always just where they were getting a training service. And I think that's really important. You know, many of us have internships, and Molly and Sarah both talked about the opportunities that they had to do some on-the-job training and work trials, but then they moved from those experiences into a community job. That's employment. When we are in a training situation and we never move away from that, that is not employment. And it's really important to help make those distinctions, not because we want to say that one type of employment is better or one term means something better than the other, but because we really want to be clear and help people make informed decisions about what they are doing with their life and what is employment from a federal perspective and state perspective and legal perspective, as opposed to what is a training opportunity. So I want to take a minute and I'm gonna start with Molly and say, Molly, can you talk about what real employment means to you?

Molly 22:07

Yeah, I'll be happy to. So, what real employment means to me, it's giving you the ability to choose a job that you want to do. I mean, this is the important part, it's the person with the disability choosing a job, not the other way around. To me, a lot of times with a disability, it feels like other people are telling you what to do, or they're directing it. What that is, is you're the one saying, "This is the job I want, and this is why." And then again, it can also be not being the first person to do a job. I would say UC Health, that's different. But to me, it has to be not just because they're trying to fill out a check form, but it has to be that they really want you for your value and your skills. Not just because they want to say that they hired someone with a disability to get publicity. Getting paid what you're worth like everyone else. So that's important to me is a lot of times with disabilities, they don't get a fair wage, or we don't get a fair wage. It's about making sure that just because you have a disability, that you get paid the same amount as everyone else at that job. And again, the main thing to me is hiring people with disabilities to do a job because they're skilled or because you value them. And because they can do the work. What I think I'd be afraid of is that people would hire people with disabilities to say that they are hiring people or that they're inclusive. And to me, it goes beyond that. It has to be because that the person can do the job, not just because they want to say that they hired someone. And again, to me that job has to have value. It can't just be that the person with the disability is doing less than someone else. It has to be that they are equal and valued as an employee that's treated with respect, I think, is the most important thing.

Sarah 24:03

I know since I have been an advocate from 2012 to present, one of the biggest things I have advocated for is trying to end the sub-minimum wage certificate - the 14C certificates - to eliminate them so that people- so that employers, which, if people don't know what a 14C certificate is, it's a special certificate that employers that employ people with disabilities can get from the US Department of Labor, and they can legally- it's a certificate that they can obtain that legally allows them to pay 'em a sub -minimum wage or a penny or a base rate/wage which is lower than the regular minimum wage. And basically, since I've been an advocate, that's one of the areas I have been advocating for. I've been advocating to try to make better for people to have, to be employed in the community and be able to get a competitive , a sub-minimum wage or better, or competitive wage like everyone else. And so basically, I, and people also want to work alongside non-disabled peers, not just be stuck in a sheltered workshop where they're only working with people within the disabled community. And hiring and sometimes it's hard for people- it's hard for employers to hire people with disabilities too because they think they have mythical or misinformation which is not right, but it happens. I mean people with disabilities that try to find jobs, they get discriminated against because of their disability. And that's really not well. People are judging by what they look, not what they know. So, shouldn't always judge a book by its cover.

Jean 26:37

Sarah, I just want to respond to that. I think that's such an important piece that you just brought up: that oftentimes there are a lot of myths about hiring people with disabilities. One of the ones that I often hear is that it increases the business's liability, and there has been documentation and data for many years, for decades, that that is simply not true. There is no increased legal or liability responsibility when you hire somebody with a disability or that they are working in your workplace any more than for any other employee, so I really appreciate you highlighting that.

Sarah 27:30

Well, I do have an example of somebody being ableist about me. When I went to, and this was several years ago, when I went to a campaign for one of my legislators that was running for office in my local dis- in my local area, I went to his campaign and talked about how people with disabilities were trying to end 14c so people with disabilities can get a great job. And there was a - it was kind of a person that attended from the community - he overheard me say, or he was standing there wanting to talk to the legislator and heard me talk and said, the only thing that I could do is go down to the Democratic headquarters and stuff envelopes. And I just kind of didn't respond because sometimes that's a res- not responding to something like that is a response too. So that's one example, probably out of millions more that of ableist ideas of people being ableized just because of what they think.

Jean 29:01

Yeah, the power of low expectations, based on, you know, false information about people with disabilities is something that really limits and hinders people's ability to move ahead. I also, Sarah, just want to note you talked a lot about 14C and the sub-minimum wage certificates. Oftentimes we hear from people who very much feel very good about their experiences in those settings. I think one of the most important things that people often don't realize is that those 14C certificates and the ability to pay sub- minimum wage are based on the federal expectation that those individuals are in those settings for a limited, a time-limited period of time, and that they're meant to train them for jobs in the community. I think helping people to really understand the difference between what does it mean to have true employment and the examples that you and Molly provided, as opposed to just continuously training people for many years, is a conversation that I think we really want to and should continue to figure out how to have in our communities because I think the more we have them, the more we can help break down those stigmas as well.

Sarah 30:37

Mm-hmm. Y'know, it's basically trying to break down the stigma that's been put to us for years.

Jean 30:45

So, our next question or our next section is: data uncovers unanticipated outcomes. Why does the money matter? I can talk for a minute from my perspective as a researcher. Data is important because it can help us to uncover things we didn't anticipate. So, for example, we may find that many people with disabilities who are highly valued employees want to work more hours, but are not able to because of the limitations on earned income. And I think that is a really important piece about um how data on wages and the number of hours that people work can help us to talk about things like do people have enough money to do the things that they want to do, as well as to pay for things that are really important. Like Sarah, you talked about paying for and paying rent for an apartment. So I'd like to invite Molly first and then Sarah to talk about: how do you use the money you earn from your jobs to enjoy other parts of your life?

Molly 32:10

Yeah, so I think when I how I use my money, I think my biggest one is paying rent because if, especially now, is if you don't pay rent, you don't have a place to live, so that's my biggest spend. But aside from that, for fun what I do is I take pottery classes. So I pay, I use my money to pay for pottery classes, and I also use it to go to events. So for example, me and my dad saw Ed Sheeran. I also use it for travel. So if I'm going on vacation, I use it to pay for that. I use it to pay for meals out with my friends. I also use it to pay if I want to buy an, you know, if I'm at the mall and I want to buy something, I use that to pay for the mall items. And that also goes back to things I enjoy. So I enjoy l running. So I use it to buy running gear. But I think the most way I use it would be in pottery classes.

Sarah 33:12

And I do pay for my cell phone bill and I go to the grocery store to get groceries for myself. And then I also I hate to say it, I kind of I kind of use the money for shopping. I'm a shopper.

Jean 33:30

Well, I don't think that's anything to be sorry about. I'm a shopper too. (laughs)

Sarah 33:34

I think we all are in something.

Jean 33:38

But I'd like to ask a follow-up question because Sarah, I think you've, you may have talked about this before, Molly. I'm not sure whether you have. Are both of you familiar with Able accounts?

Sarah 33:53

Yep, I've got one.

Jean 33:55

How's that going? Is that is that something that you would encourage more people to open up and to have to make use of?

Sarah 34:07

Yeah. I, well, I know I have one, and then right now I'm using that to pay for my classes with driving and getting my driving to be able to get, hopefully at one point sometime, get my license and a car. But yeah, I do save money in it. But I know there's one downfall to it that if a person with a disability dies, it doesn't go back to the family, it goes back to Medicaid.

Jean 34:51

Hmm. That sounds like something that it's important for policymakers to learn a little bit more about and the impact of when they wrote that law and made that decision.

Sarah 35:02

Because right now, the only way that we can actually save more than $2,000 is to either have an ABLE account or to do Medicaid Freedom to Work. If I was to just put it in my personal account and save up as much as I can, I would lose Medicaid, Medicare, and Social Security.

Jean 35:28

ABLE accounts are something that I wish more people knew about because I think they're very important. While we're talking about work, we're all working age adults. You know, 16 to 64, I'm not gonna tell anybody's age, but we're all working age adults. But I imagine at some point as we each age, we may want to consider retirement. And we'll need income to help sustain us during that period. And for people with disabilities, an ABLE account can be something that helps to prepare for that point in time when you are no longer able to work or you choose not to work anymore because you're you're ready to retire, like all of your friends. Thank you for indulging me a little bit on that, Sarah. I know there's a lot of interest at the federal level in making sure that more people learn about ABLE accounts and expand the number of people who are able to use those. So I appreciate you talking about them.

Molly 36:33

Looking back, I did realize I do have one. So my parents used to run it, but now I do, and I can say that you're right, so it's very useful, especially if you're trying to pay rent, because that's the only way I can afford my house is from ABLE. But you're right, I think from my thing, is we're I'm still learning about it, but it is so useful. Like you were saying with benefits, if you don't have a way to save, you got kicked off. So from for us, ABLE has been very handy in making sure, you know, we don't lose benefits. And to be honest, there's still more I need to learn - but I think it's something that's great, and I think you're right, there needs to be more knowledge on ABLE accounts so that people really understand the need. But I would say if you can, especially what with what I have heard on what you're saying, is if it saves you from gonna kick off benefits, then I think I think ABLE is one of the biggest benefits you can have.

Jean 37:30

Yeah, thank you. I don't want to go too far down a rabbit hole, but there is something that other researchers who are much smarter than I am in this topic call the benefits cliff. And that is, Sarah, the the concept that you've been talking about where suddenly you make too much money to have access to the healthcare and community living supports through Medicaid that many people with disabilities need to be active, engaged parts of our communities. And I think you know, ABLE accounts are one way to help people to not experience that fall off the cliff and to be able to save for their future.

Sarah 38:19

Or they experience "spend down", which means if you make too much, then they have to spend it down. I think it's like has something to do with health- is it like health care?

Jean 38:33

It's Medicaid services and supports, and it includes health care, access to health care. Yes, yeah.

Sarah 38:41

So it's like Medicaid spend down, and I've heard of many people facing that.

Jean 38:47

Again, I think why it's so important that we're seeing some wonderful initiatives coming out of the federal government, particularly the Administration on Community Living, to raise awareness about the importance of ABLE accounts in our communities. I'm gonna move us to the next question. So the next big header in pink is: how does the data track what matters for people with IDD and employment and what are our goals for employment outcomes? So I really think about the importance of having goals and expectations for increasing the number of people who have access to work in our communities. Data from my project, the Access to Integrated Employment Project, shows that it's a very slow but steady process to increase the number of people who are receiving the employment services that they need from their state IDD agency to work in the community. One of the things that, in my opinion, is why we have moved so slowly is there are not many states that have publicly set benchmarks and expectations for increasing the number of people who have access and used and integrated employment services to help them get a job in the community over time. But I can tell you that when we do look at states and when we do look at IDD agencies that set those expectations, not only do they meet those expectations, but they often far exceed them. And I think that is such an important piece, which is that we can all say we want to increase something, but unless we have a goal, unless we have something concrete that we are reaching for, it can be really difficult to make decisions about how to get there. So, from my perspective, you know, that is a very important goal that I wish more states would consider setting. And I wish that we had more conversations nationally about what is a reasonable expectation in terms of percentages of people with intellectual and developmental disabilities who are working in individual jobs of their own choosing in their community, making minimum wage or higher and earning benefits like their colleagues without disabilities. I also would love to hear from both Molly and Sarah about what you think the goals are for the number of people or the types of outcomes you think people should have around community living. Molly, could you talk a little bit about, from your perspective, what people need in order to, well, what type of goals would you like to see people have? And then what would they need to reach those goals?

Molly 42:17

Yeah. So for the first question, for the goals, for me, my goal, and I think this can go in employment, is to be able to really achieve more than you think you can. And that goes back to limitation, because like Sarah's saying a lot of times people have limitations. So to me, the goal would be for the employer or the person with disability to be like, you know what, what can I do? And what can I do to push myself to be the best version? A goal for work would be to increase the amount of employers that hire people with disabilities and to have more opportunities. And again, that goal simply could be as simple as just giving people the opportunity to interview, giving them that chance to shadow. And for me that goal would just be generally to be open-minded about what the person can really achieve. And not just do it and not just be like, okay, this person has a disorder, that means that they only can do this job. My goal is to have it increase and have it increase in a meaningful way that truly embodies disabilities and not just does it because that's what we say they should do, and what's the personal encouragement they need. For me, it was when we had vocational rehab, having a job coach, having someone help with the interviews, talk, having someone sit down and say, What areas do you want? What do you struggle in? How can we work with you? Again, my family. So having family say they believe in you and that you can do it. That's a big part. If you don't have someone - family, friends, whoever - say that they believe you can do it, then I think for me, you won't. To me it's like when someone says it's almost limitation. So if someone says, you're not gonna be able to achieve this, or you can't do it, then you can become stuck in a loop. So if someone's like, nope, no you can do this. And you will do it. It's just that push. Again, the support accommodations, job coach, making it so that you can ask for help and having someone to practice with help when needed. And I think, to me, the biggest determinant is also disability communities. Having a space that you can ask questions. And then I think I always used to say you know it's on other people. I think it's a little on us though to also be able to ask for that help and encourage- it's an encouragement within yourself to say, you know what, I do have a disability, and this is what I need. But I think family is a big support for me.

Jean 44:59

Thanks Molly, how about you Sarah?

Sarah 45:01

Well, we need to keep educating employers so that they could be willing to hire us because, I don't, well, I know with all the mythical and ableist information that's out there about people with disabilities, some employers won't even hire us. So in another sense we still have to keep on educating employers about the need to hire people with disabilities so that they can work. Because if they go up- if a person with a disability goes up and wants a job and asks how they can hire and the employer is kind of standoffish or they don't or, how shall I put it, like ableist against them, they may turn that person away. And so basically it's kinda hard to live in, to want, for a person with a disability to want a job and be able to want to work and be turned away. So in essence, we still have to educate employers. That's another key issue too. And I think also what people need to also do is try to have a desire to work too.

Jean 46:49

Thank you both Molly and Sarah, and I think that is a really important data point that we actually do have information on. My colleagues at the National Core Indicators Project annually complete a survey of participating state intellectual and developmental disabilities agencies and one of the things that they look for is when people who are part of that survey don't have a job, when they're asked if they do want a job, what's the percentage of people who, when they raise their hand and say "I do want a job", have a goal for that in their service plan? And what we know is that it's not a hundred percent. You know, I think people- we know that people want to work and they want to work in their communities. But we don't always do a good job of translating that into things like goals in their service plan help them to get those jobs.

Sarah 47:56

Or person centered planning or circle of support.

Jean 48:02

Mm-hmm. Right so that everybody who's an important part of their life, like Molly mentioned her family, are able to help the person achieve their goal.

Sarah 48:11

Mm-hmm and also, well I don't mean to interrupt you Jean-

Jean 48:16

You're fine!

Sarah 48:19

Another thing too is you also have to understand that there may be some families that may- some parents I've heard some parents think their that person with a disability is so disabled they can't work. So that could be a problem too.

Jean 48:37

I'm a parent. My son is, he's a teenager and he does not have have anything that we've ever had a diagnosis for, but I can tell you as a parent, and I think this is probably pretty universal, you are always worried about your child and you always want to protect them from anything, even though it's impossible to do, anything that could not be good for them. And I think, you know, when we're working with parents and trying to help people be heard by their families, that is an area of support that is incredibly important. It is a space that people really, I know, benefit when they have things like peer support to help them to be able to craft the words and to communicate differently when they have support from their case managers that really respects the individual's autonomy, and lets everyone be able to talk openly about why they might feel like that's not a possibility for their family member. But I agree, it is a sticky situation for a lot of folks. So that there, it is a space where we have a data point and we have great stories and examples that let us know there is more work to be done and that we can help people in new and different ways to achieve their goals. And before we move to our last question Sarah, you've used the term "ableism" multiple times in our conversation. Do you want to define what that means to you?

Sarah 50:27

Ableism is when the person that- a person with a disability knows their capabilities but when they go to- and it doesn't matter because society has put mythical information or stigma to every aspect of our lives, so when we try to do something like apply for a job sometimes people... how shall I put it, people- they have a really bad attitude towards people because of what they look look like. Or when they find out you got a disability they kind of treat you differently. Their attitude changes, they may not be open to people with disabilities working, they may have the mythical idea that people with disabilities can't work, or can't do anything. I mean it's basically a lot of mythical perceptions that society has put to the disabled community in every aspect of our lives. Basically they under- it's just society's way of undervaluing the disabled community.

Jean 51:49

So I have to tell you, I have been so honored to spend the last you know 90 minutes with both of you, as well as all of the time that we spent working together through your role as the Council of Advisors, because I feel as though what we were able to report and share in our 35 Years of Community Living report really just only begins to touch the surface of how important employment, the opportunity to contribute to our communities, earn money, do the things that we want to do and live the lives that we want - we could only just touch the very tip of it in that book. But how we have been able to talk today, and the way in which each of you have shared so openly parts about your life and contributed to the national story of employment for people with IDD, has been incredibly important. So I thank you both really, deeply just for your authenticity and your willingness to contribute and to do this podcast with me. Molly, can you close us with your closing thought? What do you want people to know about employment for people with IDD?

Molly 53:22

Yeah, so to me, what I want people to know about employment of people with ID D is I think very simple. It's that we want to work, that we all that we desire to work just like everyone else. This way, we want to be part of the community. We want to be valued and we want to give back. I think a lot of times facts and terms get thrown out, but I think at the end of the day, just like everyone else, we want to feel like we matter, that we have a purpose and I think employment- it goes back to the basic of limitations and not putting labels on people due to their disability. I think that's- anything I think about employment is if you say you can't do it. If you tell someone with a disability that they're not, that's what they believe, and that's, I think at the end of the day, I keep going back to the fact that employment that, you know, jobs at the end of the day, the person with a disability is is still a person. I think that's why I keep coming back to it like, if you were that person in the job, how would you want to be seen? I think it's simply put, if we want to be treated like everyone else. And we want to work. We want to be able to give back, but we just need the opportunity to do that. So I think, no matter what you think is, you know, just like you, we want to be part of the community. We all want to work and, simply put, that that's it.

Sarah 54:59

People with IDD along with MI all want to have jobs just like everyone else, and they want to be valued and they want people, like Molly stated, they want people, employers especially, to be open; to hopefully have an open mind to hiring people with disabilities more, and 'cause people with disabilities have the same kind of expertise as a non-disabled person has to offer, and that should- and that they should be more open to giving more opportunities to people like us. Hopefully we could keep educating the community to undo some of these mythical and biased and underrated myths and ableist ways that society has put to us over the years.

Molly 56:13

For me it's important to get back, like Sarah's saying, it's kind of breaking down those myths and those stigma that I think people might not even know they have, but it's there. So I think the more we talk about it, the more employees have the opportunity - it's just, almost to me, it's making it more known of a topic and something that people can talk on. So I think that's why I think this broadcast, I think that's why training this is important because the more it's open, the more people hear, I think it's less- it becomes less unknown. And I think that's what Sarah's saying, is that mythical- that's because people don't really know people with disabilities or what they can do. So for me, I think it's just going back to being able to look beyond and try to really see what's true and what's not in terms of disabilities. And I think if we can do that, and I think if people can get beyond the idea of, "Well they have a disability and that means this is how it's done or they can't do this", I think that's what's needed is just an open mind.

Jean 57:17

Well thank you both for being here today and being a part of the 35 Years of Community Living Project and this podcast. I invite our listeners to listen to other episodes of our 35 Years of Community Living Podcast series where we dive into other key areas including where people live and where we provide an introduction into the release of the 35 Years of Community Living Report and where you're able to learn about some of the other additional materials that we've produced to help make the data in the report come to life and have meaning for the larger community. So thank you.

Michael (intro) 58:06

Thank you for listening to 35 years of community living this series is produced by the state of the states an intellectual and development of disabilities and guided by voices with live experience. The 35 years project is the collaboration between the National Residential information systems project at the University of access to integrated employment at U.S. Boston at the state of the states and IDD at the University of Kansas support for this project comes from the administration community U.S. Department of Health and Human Services under cooperative agreement number 90 DNBA 00005010 the views expressed proposed of the project and do not necessarily reflect official ACL policy. To learn more about the projects of national significance and the 35 years project visit ACL.gov please join us for our next episode soon