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

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. 00:06:56.959 --> 00:07:01.600 You could have gone through those experiences, Sarah, and been like, "I don't like this. 00:07:01.920 --> 00:07:05.120 I don't want to start my own housekeeping business." 00:07:05.360 --> 00:07:18.639 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. 00:07:18.639 --> 00:07:25.519 Where I would go into a classroom and like interact with young kids. 00:07:25.759 --> 00:07:26.879 Did you like it? 00:07:27.439 --> 00:07:28.639 It was okay. 00:07:30.000 --> 00:07:34.079 (laughs) It wasn't your thing, and that's I think important information to know. 00:07:34.480 --> 00:07:51.519 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. 00:07:51.519 --> 00:08:05.680 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. 00:08:05.680 --> 00:08:18.560 And so basically, that's another key aspect is being able to contribute to to sustain me and my apartment. 00:08:18.560 --> 00:08:26.079 So actually, in a way, I'm a taxpayer and I do pay for my share of my apartment too. 00:08:26.079 --> 00:08:39.919 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. 00:08:39.919 --> 00:08:49.440 And when you live on your own, you don't have mom and dad to rely on all the time. 00:08:49.440 --> 00:08:56.000 And so some people need a job and be able to save. 00:08:56.000 --> 00:09:16.320 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. 00:09:17.600 --> 00:09:20.720 Sarah, those are such great points. 00:09:20.720 --> 00:09:30.159 I love how you talked about you being an entrepreneur and starting your own housekeeping business. 00:09:30.159 --> 00:09:42.240 I also really appreciate you talk about the importance of being a taxpayer and wanting to contribute to our community and our government. 00:09:42.240 --> 00:09:45.360 I think that's an incredibly important piece. 00:09:45.360 --> 00:09:52.720 I think there's a saying about um, you know, there's one thing you can always count on is death and taxes. 00:09:52.720 --> 00:10:00.080 And I think, you know, that's a very universal sort of cliche that we as adults use in the United States. 00:10:00.080 --> 00:10:02.879 And, you know, I appreciate you illustrating that. 00:10:02.879 --> 00:10:29.360 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. 00:10:29.360 --> 00:10:34.399 So I appreciate I appreciate you sharing those thoughts. 00:10:34.720 --> 00:10:54.480 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. 00:10:54.480 --> 00:11:12.159 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. 00:11:12.559 --> 00:11:15.519 Yeah, I completely agree. 00:11:15.519 --> 00:11:28.000 You know, I think all of us in the United States really want to figure out ways to maximize our economic status and place. 00:11:28.000 --> 00:11:34.159 I'm so glad that you've been able to talk to lawmakers and policymakers about those things. 00:11:34.159 --> 00:11:43.279 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. 00:11:43.279 --> 00:12:00.559 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. 00:12:00.559 --> 00:12:03.120 And I'm gonna turn it over to Molly now. 00:12:03.120 --> 00:12:09.279 Molly, can you talk a little bit from your perspective about why employment matters? 00:12:09.919 --> 00:12:18.080 To me, the reason employment for this way matters is because it's giving value to the person. 00:12:18.080 --> 00:12:27.679 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. 00:12:27.679 --> 00:12:29.840 And when you don't have a purpose, you feel lost. 00:12:29.840 --> 00:12:35.360 So that's it to me, it's about not feeling lost and knowing what you do. 00:12:35.360 --> 00:12:38.559 For me, employment has always mattered. 00:12:38.559 --> 00:12:46.320 I have always been told, you know, that if you can work, do it, so I always- and also I like to keep busy. 00:12:46.320 --> 00:12:48.720 So for me, work kept me busy. 00:12:48.720 --> 00:12:53.919 So my first job when I was young was as a camp counselor with the YMCA. 00:12:53.919 --> 00:13:00.480 My second job, I was a courtesy clerk at Safe Faye throughout high school. 00:13:00.480 --> 00:13:11.200 After high school, I worked at UC Health as a receptionist for

the medical field, so I answered calls, took notes, send a doctor. 00:13:12.399 --> 00:13:18.960 And I was the first one that they ever hired at the job with a disability, which I thought was cool. 00:13:18.960 --> 00:13:33.120 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. 00:13:33.120 --> 00:13:37.759 And right now I currently work at the Arc of Colorado. 00:13:37.759 --> 00:13:40.159 I'm a legislature and policy advocate. 00:13:40.159 --> 00:13:43.440 So like trying to pass bills, talking to legislators. 00:13:44.559 --> 00:13:53.039 But to me, the reason why I think work is important is it gives you a purpose. 00:13:53.039 --> 00:13:55.120 Something to be fulfilled. 00:13:55.120 --> 00:14:03.279 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. 00:14:03.279 --> 00:14:08.559 It gives you- it lets you contribute, and it gives you purpose. 00:14:08.559 --> 00:14:11.919 It also gives you that opportunity and responsibility. 00:14:11.919 --> 00:14:18.960 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. 00:14:18.960 --> 00:14:21.120 That's why I think this is important. 00:14:21.120 --> 00:14:34.240 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. 00:14:34.240 --> 00:14:39.440 So again, work is important to me because of all those things. 00:14:39.440 --> 00:14:45.919 But most importantly, I think if I didn't work, I wouldn't know what I could do and how I could do it. 00:14:45.919 --> 00:14:51.440 I mean data is important because it shows what you can do, but it goes beyond that. 00:14:51.440 --> 00:14:58.159 Again, when you feel like everyone else is having a purpose and you don't, that makes you feel different. 00:14:58.159 --> 00:15:03.679 But the job gives you that purpose and allows you to give you back to that community. 00:15:03.679 --> 00:15:09.519 So that, to me, is the most important thing is the independence and that human part. 00:15:10.799 --> 00:15:11.919 Thanks, Molly. 00:15:11.919 --> 00:15:21.360 I love that. I also really appreciated how you talked about the different types of jobs that you've had over the years. 00:15:21.360 --> 00:15:27.039 You didn't start as a legislative liaison with the Arc of Colorado. 00:15:27.039 --> 00:15:38.080 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. 00:15:38.080 --> 00:15:45.360 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. 00:15:45.360 --> 00:15:59.360 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. 00:15:59.360 --> 00:16:10.480 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. 00:16:10.480 --> 00:16:17.440 I also really loved how you talked about purpose. 00:16:17.440 --> 00:16:22.639 You know, having a job, you know, helps to give us purpose. 00:16:22.639 --> 00:16:24.799 It is part of our routines. 00:16:24.799 --> 00:16:42.000 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. 00:16:42.000 --> 00:16:50.559 But that purpose is incredibly important because I'm not sure what I would be doing during the day if I wasn't working. 00:16:50.559 --> 00:17:00.639 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. 00:17:00.639 --> 00:17:03.919 So I appreciate your focus on that. 00:17:03.919 --> 00:17:10.480 So our next header is what does real employment look like? 00:17:10.480 --> 00:17:17.440 And I'm gonna give a little bit of a description as to why we ask, we're asking that question. 00:17:17.440 --> 00:17:39.440 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. 00:17:39.440 --> 00:17:44.960 But it sounds like it's a little bit of a complicated term sometimes. 00:17:44.960 --> 00:17:54.240 And the reason for that is because it has different parts, three different parts. 00:17:54.240 --> 00:18:03.599 There's the focus on being competitive, there's the focus on integrated, and then there's the focus on employment. 00:18:03.599 --> 00:18:17.119 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. 00:18:17.119 --> 00:18:34.319 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. 00:18:34.319 --> 00:18:44.799 When we talk about integrated, we really mean any job that exists in our traditional communities. 00:18:44.799 --> 00:19:26.000 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. 00:19:26.000 --> 00:19:32.799 I often you know

think about there's so many jobs that I don't even know exist. 00:19:32.799 --> 00:19:37.440 And so when we talk about integrated, that's really what we mean. 00:19:37.440 --> 00:19:54.319 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. 00:19:54.319 --> 00:20:02.000 And then I feel like sometimes people think the term employment, it should be easy to understand. 00:20:02.000 --> 00:20:31.680 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. 00:20:31.680 --> 00:20:37.759 What the data tells us, unfortunately, is that a lot of people got stuck there. 00:20:37.759 --> 00:20:44.559 There was never any way to help them move out into a job in the community. 00:20:44.559 --> 00:20:50.079 Their job was always just where they were getting a training service. 00:20:50.079 --> 00:20:52.079 And I think that's really important. 00:20:52.079 --> 00:21:10.559 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. 00:21:10.559 --> 00:21:12.559 That's employment. 00:21:12.559 --> 00:21:21.839 When we are in a training situation and we never move away from that, that is not employment. 00:21:21.839 --> 00:21:56.799 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. 00:21:56.799 --> 00:22:06.720 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? 00:22:07.920 --> 00:22:10.160 Yeah, I'll be happy to. 00:22:10.160 --> 00:22:20.000 So, what real employment means to me, it's giving you the ability to choose a job that you want to do. 00:22:20.000 --> 00:22:25.599 I mean, this is the important part, it's the person with the disability choosing a job, not the other way around. 00:22:25.599 --> 00:22:31.839 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. 00:22:31.839 --> 00:22:42.079 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. 00:22:42.079 --> 00:22:44.640 I would say UC Health, that's different. 00:22:44.640 --> 00:22:54.480 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. 00:22:54.480 --> 00:23:00.880 Not just because they want to say that they hired someone with a disability to get publicity. 00:23:00.880 --> 00:23:05.039 Getting paid what you're worth like everyone else. 00:23:05.039 --> 00:23:11.119 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. 00:23:11.119 --> 00:23:18.160 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. 00:23:18.160 --> 00:23:26.480 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. 00:23:26.480 --> 00:23:29.599 And because they can do the work. 00:23:29.599 --> 00:23:38.960 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. 00:23:38.960 --> 00:23:41.279 And to me, it goes beyond that. 00:23:41.279 --> 00:23:47.119 It has to be because that the person can do the job, not just because they want to say that they hired someone. 00:23:47.119 --> 00:23:50.720 And again, to me that job has to have value. 00:23:50.720 --> 00:23:54.400 It can't just be that the person with the disability is doing less than someone else. 00:23:54.400 --> 00:24:02.720 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. 00:24:03.279 --> 00:24:55.839 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. 00:24:55.839 --> 00:25:05.200 And basically, since I've been an advocate, that's one of the areas I have been advocating for. 00:25:05.200 --> 00:25:24.559 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. 00:25:24.559 --> 00:25:47.920 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. 00:25:47.920 --> 00:26:11.759 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. 00:26:11.759 --> 00:26:22.799 I mean people with disabilities that try to find jobs, they get discriminated against because of their disability. 00:26:22.799 --> 00:26:26.960 And that's really not well. 00:26:26.960 --> 00:26:31.920 People are judging by what they look, not what they know. 00:26:31.920 --> 00:26:36.400 So, shouldn't always judge a book by its cover. 00:26:37.279 --> 00:26:40.000 Sarah, I just want to respond to that. 00:26:40.000 --> 00:26:50.640 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. 00:26:50.640 --> 00:27:09.359 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. 00:27:09.359 --> 00:27:30.799 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. 00:27:30.960 --> 00:27:44.160 Well, I do have an example of somebody being ableist about me. 00:27:44.160 --> 00:28:15.039 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. 00:28:15.039 --> 00:28:37.519 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. 00:28:37.519 --> 00:28:47.119 And I just kind of didn't respond because sometimes that's a res- not responding to something like that is a response too. 00:28:47.119 --> 00:29:00.480 So that's one example, probably out of millions more that of ableist ideas of people being ableized just because of what they think. 00:29:01.359 --> 00:29:20.160 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. 00:29:20.160 --> 00:29:28.480 I also, Sarah, just want to note you talked a lot about 14C and the sub-minimum wage certificates. 00:29:28.480 --> 00:29:40.559 Oftentimes we hear from people who very much feel very good about their experiences in those settings. 00:29:40.559 --> 00:30:07.680 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. 00:30:07.680 --> 00:30:36.880 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. 00:30:37.599 --> 00:30:38.079 Mm-hmm. 00:30:38.079 --> 00:30:45.200 Y'know, it's basically trying to break down the stigma that's been put to us for years. 00:30:45.519 --> 00:30:52.400 So, our next question or our next section is: data uncovers unanticipated outcomes. 00:30:52.400 --> 00:30:54.480 Why does the money matter? 00:30:54.480 --> 00:30:59.119 I can talk for a minute from my perspective as a researcher. 00:30:59.119 --> 00:31:05.759 Data is important because it can help us to uncover things we didn't anticipate. 00:31:05.759 --> 00:31:26.960 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. 00:31:26.960 --> 00:31:53.039 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. 00:31:53.039 --> 00:31:57.039 Like Sarah, you talked about paying for and paying rent for an apartment. 00:31:57.039 --> 00:32:08.480 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? 00:32:10.880 --> 00:32:26.160 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. 00:32:26.160 --> 00:32:29.839 But aside from that, for fun what I do is I take pottery classes. 00:32:29.839 --> 00:32:37.839 So I pay, I use my money to pay for pottery classes, and I also use it to go to events. 00:32:37.839 --> 00:32:40.000 So for example, me and my dad saw Ed Sheeran. 00:32:40.720 --> 00:32:42.880 I also use it for travel. 00:32:42.880 --> 00:32:46.960 So if I'm going on vacation, I use it to pay for that. 00:32:46.960 --> 00:32:50.720 I use it to pay for meals out with my friends. 00:32:50.720 --> 00:33:01.440 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. 00:33:01.440 --> 00:33:04.079 And that also goes back to things I enjoy. 00:33:04.079 --> 00:33:05.680 So I enjoy l running. 00:33:05.680 --> 00:33:08.000 So I use it to buy running gear. 00:33:08.000 -->

00:33:12.400 But I think the most way I use it would be in pottery classes. 00:33:12.720 --> 00:33:20.960 And I do pay for my cell phone bill and I go to the grocery store to get groceries for myself. 00:33:20.960 --> 00:33:28.880 And then I also I hate to say it, I kind of I kind of use the money for shopping. 00:33:28.880 --> 00:33:30.400 I'm a shopper. 00:33:30.799 --> 00:33:32.799 Well, I don't think that's anything to be sorry about. 00:33:32.799 --> 00:33:34.000 I'm a shopper too. (laughs) 00:33:34.240 --> 00:33:37.519 I think we all are in something. 00:33:38.480 --> 00:33:47.119 But I'd like to ask a follow-up question because Sarah, I think you've, you may have talked about this before, Molly. 00:33:47.119 --> 00:33:48.640 I'm not sure whether you have. 00:33:48.640 --> 00:33:53.440 Are both of you familiar with Able accounts? 00:33:53.920 --> 00:33:55.599 Yep, I've got one. 00:33:55.839 --> 00:33:57.039 How's that going? 00:33:57.039 --> 00:34:07.119 Is that is that something that you would encourage more people to open up and to have to make use of? 00:34:07.519 --> 00:34:08.159 Yeah. 00:34:08.159 --> 00:34:27.599 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. 00:34:27.599 --> 00:34:33.360 But yeah, I do save money in it. 00:34:33.360 --> 00:34:51.360 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. 00:34:51.679 --> 00:34:52.320 Hmm. 00:34:52.320 --> 00:35:01.760 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. 00:35:02.000 --> 00:35:15.360 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. 00:35:15.360 --> 00:35:27.599 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. 00:35:28.000 --> 00:35:36.079 ABLE accounts are something that I wish more people knew about because I think they're very important. 00:35:36.079 --> 00:35:41.599 While we're talking about work, we're all working age adults. 00:35:41.599 --> 00:35:49.920 You know, 16 to 64, I'm not gonna tell anybody's age, but we're all working age adults. 00:35:49.920 --> 00:35:56.000 But I imagine at some point as we each age, we may want to consider retirement. 00:35:56.000 --> 00:36:00.239 And we'll need income to help sustain us during that period. 00:36:00.239 --> 00:36:15.360 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. 00:36:15.360 --> 00:36:18.800 Thank you for indulging me a little bit on that, Sarah. 00:36:18.800 --> 00:36:30.480 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. 00:36:30.480 --> 00:36:33.039 So I appreciate you talking about them. 00:36:33.360 --> 00:36:36.000 Looking back, I did realize I do have one. 00:36:36.000 --> 00:36:48.559 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. 00:36:48.559 --> 00:36:55.599 But you're right, I think from my thing, is we're I'm still learning about it, but it is so useful. 00:36:55.599 --> 00:37:00.159 Like you were saying with benefits, if you don't have a way to save, you got kicked off. 00:37:00.159 --> 00:37:06.719 So from for us, ABLE has been very handy in making sure, you know, we don't lose benefits. 00:37:06.719 --> 00:37:18.320 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. 00:37:18.320 --> 00:37:30.239 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. 00:37:30.559 --> 00:37:31.760 Yeah, thank you. 00:37:31.760 --> 00:37:46.559 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. 00:37:46.559 --> 00:38:04.880 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. 00:38:04.880 --> 00:38:18.559 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. 00:38:19.039 --> 00:38:26.239 Or they experience "spend down", which means if you make too much, then they have to spend it down. 00:38:26.239 --> 00:38:32.400 I think it's like has something to do with health- is it like health care? 00:38:33.039 --> 00:38:40.159 It's Medicaid services and supports, and it includes health care, access to health care. 00:38:40.159 --> 00:38:41.119 Yes, yeah. 00:38:41.440 --> 00:38:47.280 So it's like Medicaid spend down, and I've heard of many people facing that. 00:38:47.760 --> 00:39:01.199 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.

00:39:01.199 --> 00:39:04.719 I'm gonna move us to the next question. 00:39:04.719 --> 00:39:19.440 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? 00:39:19.440 --> 00:39:36.960 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. 00:39:36.960 --> 00:39:57.760 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. 00:39:57.760 --> 00:40:28.079 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. 00:40:28.079 --> 00:40:45.199 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. 00:40:45.199 --> 00:41:04.400 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. 00:41:04.400 --> 00:41:13.599 So, from my perspective, you know, that is a very important goal that I wish more states would consider setting. 00:41:13.599 --> 00:41:39.760 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. 00:41:39.760 --> 00:42:13.360 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? 00:42:13.360 --> 00:42:16.880 And then what would they need to reach those goals? 00:42:17.280 --> 00:42:17.840 Yeah. 00:42:17.840 --> 00:42:32.159 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. 00:42:32.159 --> 00:42:38.079 And that goes back to limitation, because like Sarah's saying a lot of times people have limitations. 00:42:38.079 --> 00:42:44.559 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? 00:42:44.559 --> 00:42:48.400 And what can I do to push myself to be the best version? 00:42:48.400 --> 00:42:58.239 A goal for work would be to increase the amount of employers that hire people with disabilities and to have more opportunities. 00:42:58.239 --> 00:43:07.360 And again, that goal simply could be as simple as just giving people the opportunity to interview, giving them that chance to shadow. 00:43:07.360 --> 00:43:14.559 And for me that goal would just be generally to be open-minded about what the person can really achieve. 00:43:14.559 --> 00:43:22.079 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. 00:43:22.079 --> 00:43:35.920 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. 00:43:35.920 --> 00:43:47.280 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? 00:43:47.280 --> 00:43:48.800 What do you struggle in? 00:43:48.800 --> 00:43:50.880 How can we work with you? 00:43:50.880 --> 00:43:53.519 Again, my family. 00:43:53.519 --> 00:43:57.920 So having family say they believe in you and that you can do it. 00:43:57.920 --> 00:43:59.039 That's a big part. 00:43:59.039 --> 00:44:07.199 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. 00:44:07.199 --> 00:44:11.840 To me it's like when someone says it's almost limitation. 00:44:11.840 --> 00:44:17.039 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. 00:44:17.039 --> 00:44:19.840 So if someone's like, nope, no you can do this. 00:44:19.840 --> 00:44:20.800 And you will do it. 00:44:20.800 --> 00:44:22.239 It's just that push. 00:44:22.239 --> 00:44:33.519 Again, the support accommodations, job coach, making it so that you can ask for help and having someone to practice with help when needed. 00:44:33.519 --> 00:44:38.159 And I think, to me, the biggest determinant is also disability communities. 00:44:38.159 --> 00:44:40.639 Having a space that you can ask questions. 00:44:40.639 --> 00:44:44.400 And then I think I always used to say you know it's on other people. 00:44:44.400 --> 00:44:54.719 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. 00:44:54.719 --> 00:44:58.639 But I think family is a big support for me. 00:44:59.119 --> 00:45:01.360 Thanks Molly, how about you Sarah? 00:45:01.679 --> 00:45:25.119 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. 00:45:25.119 --> 00:45:40.719 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. 00:45:40.719 --> 00:46:09.039 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. 00:46:09.039 --> 00:46:27.280 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. 00:46:27.280 --> 00:46:32.880 So in essence, we still have to educate employers. 00:46:33.599 --> 00:46:47.920 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. 00:46:49.840 --> 00:46:58.880 Thank you both Molly and Sarah, and I think that is a really important data point that we actually do have information on. 00:46:58.880 --> 00:47:30.880 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? 00:47:30.880 --> 00:47:36.000 And what we know is that it's not a hundred percent. 00:47:36.000 --> 00:47:44.079 You know, I think people- we know that people want to work and they want to work in their communities. 00:47:44.639 --> 00:47:56.159 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. 00:47:56.960 --> 00:48:02.079 Or person centered planning or circle of support. 00:48:02.400 --> 00:48:02.880 Mm-hmm. 00:48:02.880 --> 00:48:11.519 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. 00:48:11.679 --> 00:48:16.800 Mm-hmm and also, well I don't mean to interrupt you Jean- 00:48:16.800 --> 00:48:19.039 You're fine! 00:48:19.039 --> 00:48:34.400 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. 00:48:34.639 --> 00:48:37.039 So that could be a problem too. 00:48:37.599 --> 00:49:08.480 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. 00:49:08.480 --> 00:49:20.800 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. 00:49:20.800 --> 00:49:51.840 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. 00:49:51.840 --> 00:49:56.320 But I agree, it is a sticky situation for a lot of folks. 00:49:56.320 --> 00:50:14.960 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. 00:50:15.360 --> 00:50:23.920 And before we move to our last question Sarah, you've used the term "ableism" multiple times in our conversation. 00:50:23.920 --> 00:50:27.039 Do you want to define what that means to you? 00:50:27.519 --> 00:50:59.360 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... 00:50:59.360 --> 00:51:09.280 how shall I put it, people- they have a really bad attitude towards people because of what they look look like. 00:51:09.280 --> 00:51:15.039 Or when they find out you got a disability they kind of treat you differently. 00:51:15.039 --> 00:51:31.039 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. 00:51:31.039 --> 00:51:42.559 I mean it's basically a lot of mythical perceptions that society has put to the disabled community in every aspect of our lives. 00:51:42.559 --> 00:51:49.519 Basically they under- it's just society's way of undervaluing the disabled community. 00:51:49.840 --> 00:52:42.400 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. 00:52:42.400 --> 00:53:00.400 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. 00:53:00.400 --> 00:53:11.599 So I thank you both really, deeply just for your authenticity and your willingness to contribute and to do this podcast with me. 00:53:11.599 --> 00:53:16.880 Molly, can you close us with your closing thought? 00:53:16.880 --> 00:53:21.599 What do you want people to know about employment for people with IDD? 00:53:22.239 --> 00:53:31.599 Yeah, so to me, what I want people to know about employment of people with ID D is I think very simple. 00:53:31.599 --> 00:53:39.440 It's that we want to work, that we all that we desire to work just like everyone else. 00:53:39.440 --> 00:53:42.480 This way, we want to be part of the community. 00:53:42.480 --> 00:53:45.679 We want to be valued and we want to give back. 00:53:45.679 --> 00:54:10.000 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. 00:54:10.000 --> 00:54:15.840 I think that's- anything I think about employment is if you say you can't do it. 00:54:15.840 --> 00:54:31.519 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. 00:54:31.519 --> 00:54:37.920 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? 00:54:37.920 --> 00:54:42.000 I think it's simply put, if we want to be treated like everyone else. 00:54:42.000 --> 00:54:43.360 And we want to work. 00:54:43.360 --> 00:54:47.840 We want to be able to give back, but we just need the opportunity to do that. 00:54:47.840 --> 00:54:55.440 So I think, no matter what you think is, you know, just like you, we want to be part of the community. 00:54:55.440 --> 00:54:59.039 We all want to work and, simply put, that that's it. 00:54:59.599 --> 00:55:50.880 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. 00:55:50.880 --> 00:56:13.360 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. 00:56:13.679 --> 00:56:23.679 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. 00:56:23.679 --> 00:56:33.440 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. 00:56:33.440 --> 00:56:46.320 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. 00:56:46.320 --> 00:56:53.760 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. 00:56:53.760 --> 00:57:04.639 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. 00:57:04.639 --> 00:57:17.119 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. 00:57:17.679 --> 00:57:27.760 Well thank you both for being here today and being a part of the 35 Years of Community Living Project and this podcast. 00:57:27.760 --> 00:58:04.480 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. 00:58:04.480 --> 00:58:05.760 So thank you. 00:58:06.639 --> 00:58:22.719 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. 00:58:22.719 --> 00:58:35.840 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. 00:58:35.840 --> 00:58:47.920 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. 00:58:47.920 --> 00:59:10.480 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. 00:59:10.480 --> 00:59:22.719 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