Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Bending the Arc of Disability History Toward Rights, Freedom, Social Justice, and Belonging

Presented by Allan Bergman

Section 5. Values and Employment

Allan Bergman provides a comprehensive overview of the changes in presumptive eligibility and presumptive employability in the 1998 Rehabilitation Act Amendments, as well as opportunities for applicants and eligible individuals to exercise informed choices throughout the rehabilitation process. He describes informed choice and how the Rehabilitation Act was incorporated into the Workforce Innovation and Opportunity Act. New definitions have been added to the employment vocabulary including competitive integrated employment and Employment First. Bergman completes his policy review with several research findings supporting increased efforts to employ individuals with disabilities.

Look at that vote. 95-3 in the Senate, 415-6 in the House. How many bills have you seen in the last five to six years in Congress of any type that have come out with almost unanimity? Not very many. Why? Because, once again, we had bipartisan leadership. In the Senate, Former Senator Tom Harkin. In the House, Representative Steve Bartlett.

Tom Harkin, brother of a young man, his younger brother grew up deaf. He learned about stigma and stereotype very early. If you haven't heard the story, he went with his brother and his parents to an IEP meeting, and they had been talking about what his brother wanted to do to go to college and whatever. This is real 'cause Tom tells it, I'm not making this, this is in Iowa.

And they're sitting down and the counselor says, "I don't know why we're bothering to have this meeting. He can go work in a print shop." He said, sign language, "I don't wanna work in it." "Well, but that's a great place for people who are deaf. The noise of the presses won't bother them." How's that for stigmatizing? How's that for demeaning? How's that for no choice? That was Senator Harkin's introduction to the world of disability (indistinct), okay. So, that colored him.

Representative Bartlett from Texas conservative Republican has a son with Down Syndrome, but he has very high expectations for his son that he's gonna go to work, that he's gonna have a home of his own and da da da da da da da da da.

So here are the two of them on workforce like this House and Senate, left, right. Guess what? Look at the numbers. It can happen. It must happen.

Disability is not partisan as Bob Dole taught us. It affects everybody regardless of political party, socioeconomic status, or geography, and any of those other characteristics. This is good policy for society and our country, and we must continue to move it forward.

So, in this law we made a lot of changes. The State VR and workforce have to work together. I mentioned the transition in youth focus on supported employment. Customized employment is now put into the law. We clarified supported employment and what it means that it's integrated. There's the up to age 24 for 4 years.

So, the states don't like this. They're being told prescriptively, you have to spend a big chunk of this supported employment money to do this. Why? Again, here's Eric Carter's stuff. 'Cause only 26% of students with intellectual and multiple disabilities were employed two years after high school. Well, let's work on that 18 to 24-year-old group and change that. Maybe we can get it to 60 or 70% or higher.

All right and we got a lot of kids coming out every year and you see the numbers by the kind of category or whatever. So, we have a lot of work to do.

As we were saying in the 2014 WIOA legislation with huge bipartisan support, we were able to add in customized employment which had been developing over time starting in the early nineties with money from the Office of Disability Employment Policy under the leadership of a gentleman named Michael Callahan who had taken over Marc Golden & Associates. But it really derived from his work. And I'll come back to that in a minute.

But again, I want you to look at these powerful words from the DD Act of 1984 and 1990. "Employment based on the individual's strength, needs, and interest and meeting the needs of the employer."

So again, we're not asking for charity, we're not asking for a handout. These are real job matches. And for those who are familiar with customized employment, it isn't going where the want ads are. It's a whole different job development process. But customized employment is now an approved service when appropriate for individuals getting state vocational rehabilitation services. Unfortunately, there are still a fair number of states, the last time I checked, that aren't really offering it or don't have modified providers in the state.

So, as I mentioned, this all started with a gentleman named Dr. Marc Gold. And yes, in this slide you're saying who's this hippie? Well, Dr. Gold was a PhD full professor at the University of Illinois Champaign Urbana with full credentials and publications. But that's who Marc was.

And what you see him doing here, this was in Illinois where he was working, is at a place called Dixon State School. A state DD facility with a gentleman with intellectual disability and blind. And he is assembling the Bendix bicycle brake that he was using as his task for what's called systematic instruction and task analysis. Or some people call it "try another way" because that was the verbal cue. And what you see is the wood board. That was the design where the pieces were. And what Dr. Gold did was teach people, sight unseen people. He would just walk in who were willing to sit there and learn how to assemble this bicycle brake from the old two-wheel bikes before we had the brakes up here where you had to use your feet on the pedals to put it on, and it was Bendix.

And why did he do that? 'Cause he grew up in his dad's bicycle shop in West Los Angeles as a kid. And that's where he learned how to work, and he had to put it together. So, he did that among other things, and he figured if I can teach people to do that, I can probably teach people to do something else. And he called it "try another way" because it was just a couple of different ways to put the next piece together. And if it didn't go the right way, he'd say "try another way". He might give a little hand prompt here. He was holding it to stabilize it for the man.

And this gentleman had about as much ego as the wood floor. He was confident but he was pleasant. He was as dignifying as anybody I have ever met in this field because I brought him out to an agency in San Francisco in the late seventies when he was at the prime of this work. And he unfortunately passed in 1982 at the young age of 52 from Hodgkin's lymphoma, a great loss to the field. But we'll still talk about what he did.

And I brought him out to do this with a live audience, and I said, do you have any criteria? He said, no, whatever. So, I was running a sheltered workshop and a day program in those days, said to my staff who this guy was and whatever, and they're thinking okay, that isn't gonna work. So staff, guess what? They're gonna pick the three losers, right? Guess what? All three losers turned out to be winners, including the daughter of the founder of the agency. This man's ability to sit and work with people, treat them with dignity and respect. Same basic process. 'Cause we were told these people don't have any attention span, they can't work, blah blah blah blah blah.

The best one was the third person. We did three different people. When the third person, Nick, who had been sitting in the front row obviously watching, came up and Marc sat him down and said, I'll be with you in a few minutes. 'Cause he wanted to debrief on the previous person a little bit. And Nick starts self-initiating. Marc said, excuse me, I guess Nick wants to go to work. Nick then, who allegedly had never worked more than 30 seconds on anything, worked 14 and a half minutes, did five bicycle brakes almost with no prompts. He learned it all visually watching. But he had been labeled as somebody with a 28 IQ, and therefore that provided his destiny.

It didn't happen when I left, but 10 years after I left, that sheltered workshop did close.

But this gentleman's contribution to this field is profound. Publications, six of them. IQ has no correlation to economic productivity, still not believed in 2022. And he has not been with us for 40 years. People don't wanna believe it because it violates their cultural expectation. So, that's the contribution of Marc.

And customized employment. You restructure, you recreate, you do whatever you have to do, but it's gotta work for the employer or it doesn't get done. So, we just keep going and there's a lot to it, and I'm not gonna explain it all now, but please if you know anybody who's going to do this or alleged to do it, make sure they are well trained. They do the process with fidelity and competency and don't skip steps.

The discovery process takes 40 to 60 hours to get to know the person, and you can't short circuit it because if you do, you're gonna make a mistake and it's not an assessment, it's all descriptive. And even how you write your report, you get your hand slapped by your mentor if you use comparative language in writing the report. 'Cause it's all about this person and nobody else.

So, supported employment is totally different and they get confused. Many rehab people think, oh well, it's just supported employment with a little extra. No, supported employment is basically once somebody has a job, quote the job coach helping them. And unfortunately, most of those job coaches don't know how to teach. So, they sort of handhold and sometimes they never go away because they haven't learned the technique of task analysis and systematic instruction, which is part of customized employment job coaching, or now called employment facilitation.

So, you can fade starting on day one and let coworkers and supervisors take over. So, very different in terms of what it is. And it's basically open jobs and not knocking it for a lot of people that works well, but there's no real pre-employment stuff. So, most of the work is afterwards. Whereas customized is a lot of work prior to even looking for the job and looking for the conditions and the barriers that make it work.

Discovery, profile, written plan, all detailed training that can be gotten. There's Marc Golden Associates, there's Griffin Hammis, there's Transcend, they all have slightly different approaches, but they're all on the money and you have to do it well.

So, you gotta believe that's the very, there's the expectation thing. If you don't believe that when that person comes to your office that they're capable of working, it's not gonna happen. And you've got to get it done well. And you've got to find out what are their gifts and strengths and interests and how does that mesh with an employer. And when you do that job development process well, you often find things that the employer didn't even know they needed to do better to be more efficient.

One of the stories Mike Callahan tells from way back in the beginning of this stuff, he went out to a place that did customized T-shirts, sweatshirts, and it was a one-person operation. So, the gentleman who owned it would open up the cartons of the T-shirts or the sweatshirts or whatever, lay them out, then put this thing on the machine, the dye, whatever he was doing, load that and then take and put this shirt on there, run the machine, take it off, then put it over here on the table to dry. And then when they were dry, fold them up.

And Mike went in and said, "Your skillset is really running that machine. Why don't you have somebody who can do the unboxing, the unfolding, the lay them out and then catch them on the other side and lay them out and whatever." And again, it was like Nirvana, he hadn't thought about it. He was a one-man operation and Mike had basically timed him and 'cause he did this and that's what good job development people do. He did a time analysis and this gentleman was only spending about 40% of his time on his real skillset. He was spending 60% unboxing, folding, boxing, and whatever and said, "You know, I'm sure I can get somebody in here who'd like to do this. We'll train him and you pay him a lot less than you're paying yourself, and you can improve your productivity." Two weeks later, a gentleman started to work there and the guy was blown away how much his productivity went up and his profit margin, even though his payroll went up a bit, his profit margin 'cause his volume went up.

So, this is the part about job development that's a trained skill. It's not just go knock on the door or hire, they're hiring here, let's go bring somebody in. It's totally different. So, it's a lot of work.

And this document, the essential elements of customized employment published in June of 2017, and you all can Google it, I urge you to look at it, is a brainstorming that was done by all the people who do this work. Because what was happening is states and providers said, "Oh, customized employment. Yeah, we know how to do it. We took a webinar, we'd read a book, blah blah blah, blah blah." And then people were flunking and they said, "See, we told you. Susie can't really work. She needs to be back here."

So, even though they have their differences, these people came together with federal funds to say, "You guys gotta agree because all of you are being sabotaged." I wish we could do this for every element in our field. They came up with a document that they signed off on. It was approved by the Department of Labor, the US Department of Education saying, "These are the 42 components of customized employment." Wouldn't we like to have that for early intervention? Wouldn't we like to have that for supported living? Wouldn't we like to have it go down the list for inclusive education? It's doable. It's doable if somebody's willing to say, "We've got to stop doing this sabotage and bastardization or whatever you want."

And this is a great Nobel Prize winner. "Discovery consists of looking at the same thing as everyone else and thinking something different." That's really what discovery is.

In customized employment. Yes, you have Down Syndrome, yes you have Cerebral Palsy, yes, you have a measured IQ of X, Y, Z. Yes, you're a person of short stature, whatever it might be. So what? Who are you? What do we need to find out? What makes you tick? What are the exciting things? And so, this is just a nice way to look at how discovery really can work and work to the benefit of the individual.

APSE, which is national organization I mentioned was started in 1985. Now is the association for promoting Employment First. Look at this statement, Employment in the general workforce is the first and preferred outcome in the provision of publicly funded services for all. Notice, I bolded the words working age citizens with disabilities regardless of level. So, here is a national professional organization committed to doing employment first for everybody regardless of what their disability or whatever.

So, the questions we would ask if we were interacting is why do you work? What do you work for? Think about that. Why should people with disabilities seek competitive integrated employment? Why shouldn't they work and not be expected to work? Do you get anything out of working beside a paycheck? Well, that's important. You get self-esteem when you meet somebody new and you say, "Hi, I'm Allen. What's your name? Joe. What's the next question you're gonna ask? What do you do?" It's part of our culture. "Oh, I sit home and watch TV and eat pizza. I go to the day program and I play games." Hmm, probably not. "I work, I volunteer. I'm doing an internship, I'm in training." Okay, that's why.

Okay, and here's a list, some of them, okay and we all learn. And how about social networks? How many of you have colleagues at work that you go out to have coffee with or maybe have a drink once in a while or dinner socially having nothing to do with work 'cause you like each other, you bond. So, all of these things happen in the workplace and they happen for people with disabilities too if we create the environment and opportunities to do it.

So, I mentioned earlier the continuum that Bob Gettings had mentioned to me when we first passed supported employment, okay, research 20 years. Oregon, Tom Bellamy, Dave Bank, looking at the trajectory in Oregon and Washington state, which are known as fairly progressive states at least then, on what happens to kids from 18 into adulthood going through the continuum, both residentially and employment.

So, the typical was you get outta school, severe significant disability, you go to a day program, then you go to a work activity center. We don't have those anymore. That was before sheltered workshop. Then you go to a crew, then you go to an enclave, then maybe you go to supported employment and maybe you get a real job. Okay, on the residential, no different. Public or private intermediate care facility, specialized group home, regular group home, apartment complex, maybe your own home.

On the work and day stuff. Here's what they track. If you start at age 21 in the adult system, you get your first job when you are 67.2 years old, people don't move. It's a medical model, it's a fix it model. We must reject it. People still use it today. It's invalid. We've rejected the medical model. We're not fixing broken people. You don't have to graduate from box A to box B to box C to box D because the criteria are set so high you'll never make them.

This was followed up by a study when I was in Colorado by two people at UCED and they went out and they went to a bunch of entry-level employers in metro Denver. What are your minimal criteria for hiring somebody at starting wage? Okay, then they went to all of the adult providers who were doing employment, including sheltered work, et cetera, and said, what are your exit criteria, your graduation if you will, in order for you to feel comfortable moving somebody to employment? John (indistinct) and Gail Bernstein, I knew the names would come back to me.

Okay, employers right here. Pretty minimal. Graduation from the continuum up here. You almost had to have a PhD to get out of the job development program to get an entry-level job in any place. And one of them, which has stuck with me and was in all but one of the providers, you had to be able to balance a checkbook. What does that have to do with employment? And how many people do we know who are working who have credit card debt or bounce checks? This is this artificiality of expectation that we have created the line so high that we make it impossible for people including people with disabilities. But there would be neuro-typical people who would flunk that test too.

The continuum is a myth. We must get rid of it. Everybody can work, period. End of line, if given the opportunity. Competency, deviancy thing. By Marc Gold is we gotta focus on the competency, not the deviancy or the differences. Okay, place and train. Don't train, don't do the artificial training. What do we know about people with intellectual disabilities? They have difficulty generalizing. So, we're gonna train you in this simulated place how to do something and then we take you to the real world and it doesn't look like it. Guess what? We gotta start it all over again. Marc gave us that. It's still happening unfortunately.

I mentioned the IQ doesn't correlate. Supported employment, Bellamy/Mank and the folks at Virginia Commonwealth University did great work. And then Callahan brought us customized employment, self-employment, Hammis and Griffin. And now my friend the economist at Kent State, Rob Cimera took a look at supported versus sheltered employment. And lo and behold, oh my goodness, SE is supported employment, SW sheltered work, and he's an economist, remember? Okay, look at those differences. Cost per hour worked cumulative cost, two and a half times as much for sheltered workshop. Cost per dollar earned almost five times. Okay, where's the bad deal here?

All right, so he gets into good economic terms and we need to talk about this. I used to start talking about return on investment in DC in 1990. People looked at me like I was truly Looney Tunes. But guess what? The federal budget continues to grow. We spend mega billions and billions of dollars. And I showed you the special ed outcomes and I'll show you the employment ones in a little bit and the housing ones we're way behind.

So, here's the bottom line. Regardless of disability or severity, supported employment has a better return on investment to the taxpayer than sheltered work. So, where's the wake up call? We've now got an economist, not an ideologue, not a practitioner, not a researcher, an economist saying wake up government, get a better bang for your buck. And there again, you can just look at the differences here on earnings and the cost of getting it there. So, Rob's given us good data over the years and it's should hold up.

So, I wanna show you a couple of examples. This is a nice sheltered workshop. Something I'm sure all of us would love to do is take hangers that somebody donated to the agency and stack them on those three columns so they line up nicely. So, then I guess they can be packaged and sold to another cleaner or laundry or what have you. So, that's sheltered work.

And now let's take a look at the same person who was doing that, who people found out when they got to know her, liked to take things apart. She really wasn't enjoying stacking the hangers. She's working at a car junk shop, taking parts out of the car very nicely. She loves to do this. She's not a mechanic, but she can disassemble stuff being paid five times as much as she was earning in the sheltered workshop. And as you can see, thriving at her work. That's what happens when we try to look at somebody with a different set of lenses. So, we need to keep doing that.

Fortunately, the sub-minimum wage certificate numbers are going down, you can see here in the chart. And we're getting there and we're down to less than a hundred thousand people in 2020, but that's still 67,000 people earning less than minimum wage. But that's a big drop from 241, four years earlier.

Good news is a number of states have begun to phase it out or make it illegal. The first was New Hampshire. And again, if you don't know the connection there, the Governor at that time was Maggie Hassan, who is now a US Senator who is a Partners in Leadership graduate from the New Hampshire Partners program and is the mom of a son who experiences disability from significant Cerebral Palsy. And what Maggie would tell you is she started her public service on advocating for her son to be fully included in school. And she is now a US Senator, I think the first woman to be elected a Governor and then a US Senator. And from any place in the country, if my memory is correct. So, she got this law passed because she saw it as so demeaning that New Hampshire was the first state to say we don't care what the feds say, we're not allowing it in the state of New Hampshire. And now a number of states have passed some or all of it.

And we're slowly getting there. And sometime it will be in the history books like a dinosaur. But again, this was what Bob Gettings told me. You can see in 1990 the integrated employment numbers started to go up a little bit but basically have plateaued out of all the people getting day supports. And it hasn't changed very much in the last 10 years either. Little bit better. So, Bob was right, the continuum was there, but most people are still in day program or they're in sheltered work. And that's it. And you can see the ranges.

Now this is where I think states need to get serious. Look at the differences across the states. Ladies and gentlemen, this is the most recent data we had pre-pandemic 2018 from the folks in Boston. And they collect this from the states. So, the US average was 21.1%. Hmm not very good. That means basically almost 80% of the folks in the DD systems are not in integrated employment or getting employment services. But what's wrong with Washington state 85% are. Oklahoma 66%, Oregon and Rhode Island both had federal lawsuits, which helped their numbers. New Hampshire 'cause they got out of sub-minimum wage. And then the numbers start going down, down, down.

And here's the dilemma. Is Washington different? Does it have a different population? Does Oklahoma have a different population or Oregon? And we all know the answer is absolutely not. But I used to be told by somebody, but Allan, you don't understand. Yeah, I don't understand that in Washington state they had leadership that said, we're serious about employment first and we're gonna make it a priority.

And if you're not aware in the state of Washington, when you move to the adult system, even with choice, you don't get to say, I don't wanna work. You can't say I want to go to day program. You must spend nine months in trial work and discovery and volunteering and guess what? You get a taste of it and you like it. And lo and behold, the schools are now under more pressure to beef up their transition IEPs 'cause parents wanna make sure that their sons and daughters succeed. 85%, that's pretty significant. So, it can be done, it is doable. It takes leadership, it takes commitment, and it takes money. That's the way it is.

Okay, and then here was from 2018, the numbers on what's more important. We all get misled by unemployment statistics. Unemployment only tells you who's looking for work. Employment participation tells you who's working or looking for work. And in 2018 pre-pandemic, you can see that over three-fourths of the typical population is working or looking for work.

We get to disability, it's about a third. You get to mental disability 25 and you get to cognitive disability and SSI, it's about 15, which means conversely 85% of people with intellectual and developmental disabilities neither are working or seeking employment. That's pretty sad.

And here's the updated data from 2020. And this is Bureau of Labor Statistics. And as you will see, it hasn't changed very much. In the 16 to 64-year-old person with disability, employment participation, all kinds is 35%. In the neuro-typical population, 76%. Okay so, that means 65% across all disability categories are neither working nor seeking employment in the age range of 16 to 64 in 2020. That's inexcusable. And it's not because most of those people don't wanna work or can't work, it's because the system isn't accommodating them.

Then we've got what's happening in day services in DD. And again, you can look at the numbers. Fortunately, a number of the leading states have nobody in segregated day program. They're out doing stuff in the community and then the numbers go all the way up. And they're pretty large numbers in New Jersey, Texas, Alabama, Illinois. Same data from the folks in Boston. And pretty sad.

But here's the good news. Those nasty people called the National Association of State Directors of Developmental Disability Services for whom I have great respect obviously, passed a resolution last year, calling for the repeal of sub-minimum wage, systematic marginalization of individuals with disabilities is what it has created.

And remember again, this is 1938 law. That's a long time ago when we first passed the sub-minimum wage. And the resolution continues and goes on, okay? All individuals, regardless of disability, have a right to be paid, federal or state minimum wage or prevailing wage, call for federal action resource. So, this is coming from the state DD Directors collectively across the United States saying sub-minimum wage has to go away. It's done. It's done what it needed to do.

And then lots of damage since we need to get rid of it. That's a landmark resolution in my opinion. So, they're gonna assist the states and all of that. And once again, go back to some old history and Plato's even older than any of us on this series. "Each citizen should plan his part in the community according to his individual gifts." Today, we'd say to their individual gifts.

So, even Plato realized everybody had a contribution. Somehow we got stuck in the disability medical deficit continuum model, which still unfortunately pervades a lot of our systems and our culture and we need to get rid of it.

Competitive integrated employment, as I mentioned, was included in the Workforce Innovation Opportunity Act or WIOA. This is a very prescriptive definition in statute because the advocates said we're tired of the gaming by certain people to make something look like integrated employment. And a famous example was, oh, Home Depot, they're willing to have a crew work in the back room of seven or eight people from the agency with a job coach and they'll do boxing or whatever and we'll pay a minimum wage. But they were totally segregated. They had no contact with other employees, they had no contact with the general public. That's not integrated employment. They might as well as be invisible. They were invisible.

So, consequently this definition is extremely prescriptive about wages and how people do their work and the occupation classification and self-employed and location, interaction. It's very, very prescriptive for that reason so that people couldn't game it and try to say, yeah, well, that's really what we're doing. So, it's their opportunity for advancement. Remember we started talking about careers. Most people wanna move along, they wanna make more money or they want to do another job or have added responsibility. That can apply to people with disabilities as well. And again, you've got the section of the law here that cites it. This is law. This is not even a regulation. This is passed by Congress at the urging of advocates. This is what we mean. And anything less than that is not competitive integrated employment and you voc rehab can't pay for it then. So, it's pretty powerful.

Okay, again, here's research from 2016. Look what it does. Competitive integrated employment, social role achievement, economic health outcomes, mental health benefits. Other than that, why would you want people working? Why would you wanna save money? Why would you want their self-esteem? Okay and it's just beautiful stuff. Thank you for the research. And here's more research including from Paul Wehman at Virginia Commonwealth. All right, about the psychological benefits. Mike Wehmeyer, Kansas. These are prestigious people in our field who are publishing data and results and surveys about what's happening when people go to work. There are no losers here except traditional providers. And I'm sorry, they need to get along with it.

Here are the different ways we can get there. Supported, customized internships, apprenticeships, we need to do a much better job on voc ed and trades. If you haven't followed it in your community, they're begging for workers because we have demeaned blue-collar labor in this country. You have to go to college and you have to have a bachelor's degree or a master's, okay.

We need carpenters, we need plumbers, they need helpers, we need electricians. HVAC, auto repair, tool and dye factories. And you know what? They pay very well. Most of them are paying now $20, $22 an hour. Career advancement and benefits. I know some people who are making more money in a blue-collar job than a colleague who went to college for four years and got a BA and is struggling to find a job for $30,000 a year.

And I'm not demeaning college education, but I'm saying we've gotta open this up in particularly for people with disabilities, business schools, community college, voc ed, apprenticeships. It's wide open and we need to think differently if somebody's interested in it, what are the accommodations under ADA or 504? What is the technology? How can we assist somebody to be good at it? And guess what? If we're willing to do it, we'll find it.

And then we get to the frosting on the cake almost. Medicaid, the biggest payer for adult services. I have been following Medicaid since 1981 when the waivers first started. Some people say I'm a Medicaid junkie, I follow it. 'Cause I was told that's where all the money's gonna be. And you'll see in a bit it is. In 2011, this is now 11 years ago, a technical guide came out from the Center for Medicare and Medicaid Services on the importance of employment in the lives of people with disabilities.

And they wanna support state efforts to increase employment opportunities and community, meaningful community integration for Medicaid waiver participants. That is to me amazing. But they read the research, they see the cost benefit, they see the reduced health costs, they know what's going on. And here's more of it, again, the same guidance, I highlighted it, but this is their exact language. "Work is a fundamental part of adult life." "Been associated with positive physical and mental health benefits. Part of building a healthy lifestyle as a contributing member of society."

All individuals, regardless of disability and age, can work and work optimally with opportunity, training, and support. And look at the words. Here, they come again from the DD Act. "Build on each person's strengths and interests, individually tailored and preference-based job development." That's Medicaid folks. That's not Voc Rehab, that's not the University Center on Excellence. That's not Paul Wehman. That isn't the late Marc Gold. That isn't Griffin Hammis. That isn't Allan Bergman. This is the Center for Medicare and Medicaid Services saying it's a priority.

And then why would we want to have more data? But this came from our colleagues in Iowa at the University of Iowa. They studied claims for Medicaid and Medicare for people before and after they went to work as part of a demonstration grant and using the so-called Medicaid buy-in from 1999. So, you can see that costs went down for both Medicaid and Medicaid and Medicare dual beneficiaries. And the big number, look at this, in one year they saved $21 million of Medicaid healthcare money. How much job development and training and customized employment would that provide? How much support for supported living? How many pieces of assistive technology and devices? One time, not ongoing and chronic. Okay, that's a ton of money.

That's a ton of money, okay. And that's total claims. And Iowa, I think, is about a 60-40 state. But nonetheless, 40% of that is Iowa. That's $8,000,000. 60% is federal, is 12. That's a lot of money. That's a lot of money. And this has been around now for a chunk of time. Is it well read? Is it disseminated? Not that I'm aware of. I show it every place I go 'cause it's real. And people's lives are better.

So, it's a win-win. People's lives are better. They're earning money, they have self-esteem, they have purchasing power, they're paying taxes and their healthcare costs and mental healthcare costs go down because they're busy and productive. And yes, work is stressful. Guess what? Non-work is much more stressful to the person physically and psychologically. So, we gotta get with it.

And again, Galen, long time ago, look at this. "Employment is nature's best physician and is essential to human happiness." That's a beautiful statement. Why do we not see that as applying to everybody? And he was a doctor and a philosopher in the Roman Empire. He didn't know about supported employment. He didn't know about customized employment, he didn't know about assistive technology, he didn't know about systematic instruction, universal design for learning, accessibility. But he knew what it did for the soul.

And so, we need to learn from the wisdom of the past and the current laws and practice. This needs to be, as APSE says, the top priority for everybody regardless of significance or severity of disability. But then we get caught in this criss-cross called Social Security. And yes, you can go to work and there's work incentives and the ticket and the Medicaid buy-in. But in order to qualify, you have to show that you're not capable of engaging in substantial gainful activity or employment.

So, we have this ying and the yang and I'll share with you again a painful story from a mom in Illinois who a number of years ago, son was doing well in school, was already working part-time, a family had found an apartment in the same community in the suburbs where he grew up and were looking toward that. I think he was turning 18 so he had maybe one more year to go in high school. But they were told, of course, by special ed, as soon as he turns 18, go to Social Security office and get him on SSI and get him a Medicaid card 'cause that's gonna be his lifeline for the future.

So, they did, unfortunately if she had called me. But anyhow, and I knew this mom, but she went and here's what happened in the office and I share it with you. 'Cause I'm sure it still happens today in some offices. So, she had all the paperwork, birth certificate, medical diagnosis, IEP, all the stuff she was told to bring. And she brought her son with her. 'Cause it was again his meeting. So, she sits down with the intake person, they had an appointment and she shows the paperwork and says intake works. So, tell me about your son.

So, what's a mom gonna do? She's gonna brag, right? Well, he's doing this and he's volunteering here and he did a little work over here and we find this apartment. I want you with the son there, which makes it even worse. The worker says, shut up. I don't want to hear what he can do. You need to tell me all the things he can't do. How's that for disgusting? I understand her rules say, could we excuse your son and could I talk to you a little bit about how the system works? That would've been reasonable maybe. In front of the son.

So, then she has to go nitpick about the things he's not doing so well to get him qualified. She called me that night over the phone. She was bawling. And here's the worst part. I guess, Allan, we've done it all wrong. We shouldn't have him working and we shouldn't be looking for a home for him. How devastating is that? And I share these real stories with you. 'Cause I'm sure they're not the only ones. That's incredulous.

That's about 12 years ago, not a hundred. I was running a large agency and her husband was on the board. That's how I knew about it. How horrible for the mom. But her son's sitting there being told, shut up, I don't wanna know what you can do. You're a piece of trash. Tell me all the crap about you. That's really what was being said. How despicable. Talk about where's the dignity here, where's the civility here?

It's horrible. We've gotta figure out a better way.

Okay so, we've gotta change the financial stability paradigm and we don't need a life of poverty in exchange for public assistance. We've gotta get the full promise of the ADA. ADA has four goals, equality of opportunity, full participation, independent living, and economic self-sufficiency. And remember what I said earlier, no exceptions, no exclusions. Thank you, the late Justin Dart, every person is included with the protections and the goals.

And again, on goals we may not get there. Does everybody have goals in their life? Mountain climbers have goals. Do they always get to the top peak? No. But the goal is still, I'm gonna get there. These goals apply to everybody regardless of severity of disability.

And people have to control money and they've gotta learn money management and they may need support to do that. I have rep payee for my daughter Dina. 'Cause money management is not her forte, okay. That doesn't prevent her from having a life, doesn't prevent her from working. Just means she needs help with her budgeting. Okay, big deal. I know lots of people who need help with their budgeting and they don't have disabilities, so that's not a prerequisite.

Okay so, we just have to keep changing the paradigm.

These next several slides I'm not gonna spend a lot of time on, just you need to know, There are a whole potpourri of work incentives for SSDI and SSI beneficiaries. Some specific for SSDI, some specific to SSI. And you must use, I mentioned earlier, the WIPA organization, the Work Incentive Planning Assistance or some of the state rehab agencies have people, they're called CWIC, Community Work Incentive Coordinators. They have been trained to help you do your benefits planning. So, you maximize your earnings without totally jeopardizing your public benefits.

Even if your SSI check goes down to $2 a month or something like that, no big deal, you're gonna come out with a lot more money at the end of it. And they do basically an Excel spreadsheet as an individual plan for each person. Everybody before they work should sit down with one of these people.

And then we made it even easier. Thanks again to Madeline Will, who I mentioned earlier and a bunch of others. We passed in 2014, the ABLE Act, Achieving a Better Life Experience, which is to help people with disabilities and families meet ongoing support needs. So, it was signed December of 2014. Again, huge bipartisan support because the parallel is 529 savings accounts.

Everybody thinks those are wonderful. Put money away for your kids to go to college, right? Well for your kid who's not gonna go to college, how about putting money away for their adult life just as well. And again, it's all beautiful. It's tax deferred. It's tax free. You can now have up to a hundred thousand dollars in a savings account under ABLE and not lose your SSI. So, the $2000 of asset thing is gone. And the same with the Medicaid benefits. It's all varied determining different states. And again, pretty simple who gets in.

There's a bill pending now to raise it to 46 as opposed to 26. That was a bad mistake. That was done back in 2014. I won't go there. It was originally gonna be 50, but it got cut 'cause of cost. So, now you have to have your disability before 26 to take an ABLE account. That's not fair to somebody who at 27 develops MS or has a Traumatic Brain Injury or has an amputation or go down the list of stuff. So, hopefully that will, but the rules won't change.

And the IRS, this took a long time, Social Security, Medicaid, Medicare, and the IRS to all come together, but they did. And so, it's in place and it really makes a big difference in people's lives. And again, you have, the one thing people don't like is there's a payback provision in Medicaid at death. So, if you have 20 grand ($20,000) left in the account, although some states have repealed it, the states may claim $20,000. How many Medicaid dollars have you taken in over your lifetime?

And again, I'll put on the return on investment, okay so, you're gonna get $20,000 but over the course of my lifetime, you've spent 50 grand ($50,000) a year for 40 years. That's 2 million dollars. $20,000, $2 million. What stock can I buy tomorrow that will do that for me? So, we don't have to be that greedy about this entitlement, but some states have repealed that now too.

And this is a good alternative to the special needs trust for some people who have a lot of money. You can have both, but this is a great thing and one of the things I advise families to do now at a very young age, open one of these ABLE accounts, start putting money away because the biggest challenge you'll face in the future isn't going to be employment. It's gonna be affordable housing, save money.

It might be enough to get a down payment on a house for your son or daughter or possibly they and a couple of their friends. And you form a corporation and they use their earnings and or benefits to pay the mortgage and the rent and utilities and they have their own home and they're not a pawn in the game with the system. So, definitely is a workable solution.

Here are all the things approved by the Secretary of Treasury. Yeah, lots of stuff. You can buy an accessible van if you need it. You can pay for your own job coach, you can buy your own technology. So, the list is very thorough and well thought out and we like it a lot and I encourage people to use it.

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This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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