Lisa A Mills, Ph.D. is a national subject matter expert on supported employment who has helped over 20 states create or improve Medicaid and Department of Vocational Rehabilitation services. Lisa is also the parent of a son who has a disability and utilized supported employment to obtain competitive, integrated employment. I've had the pleasure of working with Lisa, and she has such an amazing and unique skillset, that both pushes and humbles me as I move forward in my career. We are all lucky that Lisa found her way to this work.
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Lisa A Mills, Ph.D. is a national subject matter expert on supported employment who has helped over 20 states create or improve Medicaid and Department of Vocational Rehabilitation services. Lisa is also the parent of a son who has a disability and utilized supported employment to obtain competitive, integrated employment. I've had the pleasure of working with Lisa, and she has such an amazing and unique skillset, that both pushes and humbles me as I move forward in my career. We are all lucky that Lisa found her way to this work.
Links for The Landscape Pages
Link to The Landscape FB Page
Link to The Landscape Instagram Page
Link to sign up News Letter
Link to The Landscape LinkedIn
Naveh Eldar 0:17
Welcome to the landscape, a podcast to shed light on the people, programs and businesses that are changing the landscape for individuals with any type of disability. I'm your host avail dar. Today's guest is Lisa a Mills PhD, who was a consultant on Disability Employment Policy and systems changes. And she has worked with over 20 states, as well as the US Department of Labor's Office of Disability Employment Policy. And more. Not only is Lisa a national subject matter expert on supported employment, but she is also the parent of a teenage son living with intellectual and behavioral health disabilities, who was working competitively using supportive employment services. And you'll hear a little bit about him later in the episode. Make sure to subscribe to the landscape and give a review if you use Apple podcast. Now, today's conversation starts with Lisa giving a brief history on how and why individuals with an intellectual and developmental disability moved out of institutions and into the community.
Lisa A. Mills, Ph.D. 1:28
Okay, well, that takes us all the way back to the I would say the late 60s and the early 70s. And it, the drive for Community Services was really brought about by parents, parents who refuse to institutionalize their children with disabilities. And at the time, the state would come to your home, the state would come and encourage institutionalization. Because at the time, they thought it was the best thing. But there were a lot of parents a growing number of parents who said no, and wanted to keep their children at home, and wanted services. And so Originally, it started with just parent groups of parents and charitable organizations like the ark, just developing options to support families. And then it grew into really pressure for the federal government to allow dollars to go to something other than institutions. And that was, I looked back October of 1981, when Congress passed a law that allows for what they now call waivers, which means the state could propose to wait, you know, have the institutional requirements waived, and to be able to ride home and community based services. And that's when dollar started to flow. And states started to operate those programs.
Naveh Eldar 2:49
What was life like, for individuals living in those institutions, what kind of services were given to them there.
Lisa A. Mills, Ph.D. 2:56
So it changed over time, I think institutions were originally created. Because, you know, we thought as a society, it would be the best thing for people. There was a time when it was just strictly to to remove people from society and get them out of society. But then there was a time where it was very therapeutic. And there were a lot of services offered. But they were never geared towards people being able to leave the institution. And they were never geared towards people being able to become more independent. So over time, the emphasis on therapy really rooted into an emphasis on just maintaining people, you know, and it became a place where all we did was just just house people just just keep them in a place. And the problem was that increasingly, society just switched off and didn't pay attention to what was going on. And families were further and further away from there and disconnected. And then bad things started to happen. And they were hidden. They were covered up, they they were not taken care of. And, of course, you had some of the really awful horror stories that came out around the world around how people were treated, which helped propel the deinstitutionalization movement. But basically, it was a warehouse, you know, in a lot of cases. That's all that it was.
Naveh Eldar 4:26
And then so what was that first step out of being institutionalized? So when, when they first decided let's move them out, where was the next phase of their treatment?
Lisa A. Mills, Ph.D. 4:39
A lot of what we created in the community originally are what we refer to as group homes now, they were large beds, bedded units 812 16. bedded units run very much like the institution. And then we actually encouraged and utilize institutional staff who We're willing to transition to these group homes. And that created, you know, there I have books from 20 years ago where we wrote about creating mini institutions and the community just really replicating that whole culture. And that whole care mentality in community. And that didn't happen everywhere. But that was often common, particularly in states where there were lawsuits that forced the state to close institutions,
Naveh Eldar 5:30
I imagined that they would go on little field trips or things like that to say we're taking him in the community. But other than that, they were just in these homes.
Lisa A. Mills, Ph.D. 5:39
Right, it was limited. And they were often sent to what we call today, day programs, or sheltered workshops. So their life was very much still segregated, they did travel between their home and day program in a sheltered workshop and back, but there was not a lot of community activity. And if it was done, it was done in really large groups that are really in a way that really stigmatized people.
Naveh Eldar 6:07
So we step it till today, and we have these home and community based services, which really are not very widespread as far as states, and you could probably speak to that better than I can like, how many states are actually using, you know, that is the preferred, you know, method of providing services. But so what is the philosophy and goal behind those services?
Lisa A. Mills, Ph.D. 6:31
It depends who you ask, I would say, originally, the the the goal of home and community based services was simply to avoid having to institutionalize people. And that was our bar, and it was a pretty low bar. But as we evolve, there's more and more pressure around those services really leading to people becoming full and contributing members of their communities to having all the same opportunities that anyone else living in their community has, including what they do with their free time, being able to have a job being able to be members of a church or other things. So there's a real expectation that people have true community inclusion, I think the ADA helped with that. So of course, the ABA came out a decade or more after these waivers started. And now recently, we have the home and community based settings rule that came out in 2014, that even pushes further the expectations about people experiences and what they should be experiencing. So a lot of home and community based services are evolving. Now. Those big group homes are disappearing. And we're seeing people live in smaller settings. We're seeing them live in what we call supported living where they have their own apartment or their own home, and the staff just come in and support them as they need it. Not group homes owned by providers. We've gone away from segregated day programs and sheltered workshops to supporting people to just do things in the community like you or I would. We are supporting people to get regular jobs and be part of the mainstream workforce. So you know, in every way we're shifting, we keep evolving and shifting the the what HCBS what community services really means for people. And I think we just need to keep doing that. Keep asking ourselves, what's the difference between the opportunities, folks with intellectual developmental disabilities have and the opportunities that we have,
Naveh Eldar 8:39
where you've made your name for yourself is helping states to make this transformation to these disease, more inclusive services, the services that are more aspirational. And so I know for a fact that there's resistance even from family members of these of individuals with intellectual and developmental disabilities, that they're not capable. They're, they're not safe. They're, you know, all of these things that that they believe in. So what outcomes are we seeing now that this has been in place for a few years in certain states? Like what argument can you make against that?
Lisa A. Mills, Ph.D. 9:15
Well, safety, for example, is an interesting because we used to think that people in institutions that that was the safest place for them. And we learned, unfortunately, the hard way. I think that that was not the safest place. Then we got into large group homes and segregated day programs and workshops and the belief that people are safe, they're continued. The idea that some other community is is not safe and are segregated models of service are safe. There's no data to support that. And it continues that the data shows that most of the incidents and things that happened to people occur in our segregated programs and It'll be greatly reduced when people are just involved in the community. Now that it's still hard, and they're still going to be worry. And that's why when we do person centered planning with people, we have to include looking at risk and looking at how we reduce risk. But the the ultimate way to reduce risk is not to take it out of people's lives. In my opinion, there's a lot of danger in that. So we have to work with people who are hesitant to walk with them, and show them how it could be possible and ask them to try it. Because I think the more people experience what's possible, the more that is what they want.
Naveh Eldar 10:46
So you talked about person centered planning, which is probably a phrase that most people do not know. Because they have never needed to know that phrase, right for themselves or for their their loved ones. So explain what that is.
Lisa A. Mills, Ph.D. 10:59
So in order to provide services and supports that people need, our system says we have to have a plan for that, we have to have a plan that helps us understand what people say, goals and preferences are, what their needs are, how they want to receive services, who they want to receive services from, when they want to receive services, all these things matter, they all need to be put in what we call a person centered plan. Now I did person centered planning for the first time back in 1991, it wasn't part of the system, it was it was just a way that people were discovering was a really great way to help people have good lives. And at the end, so over time, the system has embraced the value of person centered planning and has said we expect that everyone will have a person centered plan. And the emphasis on person centered and why that language is used is because previously, we did have plans, institutions had plans for people, those were system centered plans where the system decided how it could conveniently serve you and where you where it was cheapest to serve you and what you needed was up to the professionals. And we have now shifted that quite a bit to say that people themselves know best what they need. And and so they this plan should be centered around the person, not our system.
Naveh Eldar 12:32
It's interesting, we're gonna get into your sub where you're a subject matter expert, which is supported employment, but that, you know, one of the most difficult things when it comes to training or changing is this concept that the individual can make decisions for themselves, because we are so used to as a society of telling individuals with a disability, what is best for them. And so I still have providers that I that I work with and train that, you know, they asked the question, well, well, that isn't what's best for them like that. That's a mistake. And you know, I said, Well, one, okay, you know, like, you've never made a mistake, like, my daughter may not take a major that I agree with, you won't make enough money in that major, but it's her choice to make that. And you know, I live in Nashville, Tennessee, how many people who have moved to Nashville to become a music star. And they have not the ability to but but you can't tie them to the bed and not let them go. So we're all allowed to make these decisions. So that's, you know, it's hard. It's amazing. I was hard for people to wrap their brains around that everybody has the right to do that. So let's get into your subject matter expertise, which is supported employment. So what is supportive employment? And why is it needed.
Lisa A. Mills, Ph.D. 13:51
So supported employment, it's its model of service, but it's also a way to to enable people with significant disabilities to work, right next to the rest of us in the mainstream workforce been around since you know, the late 70s, early 80s. And it's evolved in terms of what we consider to be most progressive today, of course, but it essentially means that with the right supports and the right job match, anyone can work, almost anyone can work. And what it does is it it's a process of of working with people to discover what they have to offer to the business businesses and employers and to represent them in a negotiating, hiring with businesses, employers to help them with training, in addition to the supports that we'd get from from their co workers and their supervisors, to give them the additional sports they need so they can both get a good job and keep a good job.
Naveh Eldar 14:59
So employee MIT has been, you know, it's been around for the disability community for a long time, but it's gone through its phases for sure, as well. And you made reference to some of it earlier. So can you talk about the different forms of employment because it was always seen as valuable. And I want to talk about, of course, like enclaves or mobile work crew crews and sub minimum wage. Can you kind of talk about all of that?
Lisa A. Mills, Ph.D. 15:26
Yeah. So back in the 60s and early 70s, I mean, sheltered what we refer to today, as sheltered workshops are places where large numbers of people with disabilities came together to do menial production. They were paid based on how many widgets they could create. But back then it was a pretty radical notion that people with significant disabilities could do any kind of work that they could, they could do anything. So it served as purpose back then, in terms of making sure that we all understood that people had capabilities with regard to work. But what happened, of course, is that it became easy for the system to just have everybody go to the workshop to have buses that ran to have people in those settings and large numbers doing menial tasks, it kept people busy, they had a place to go. And we got really comfortable with that model. Until I think it was self advocates. I would say it was the people themselves, their families, others who said, Wait a minute, is this really all that Kate people are capable of? And are we really being fair to people by keeping them in these types of places, or making them go there first, before we think they earned the right to work in a regular job. And so supported employment really became a civil rights issue when it was first developed. And there was very much a sense that this is a civil right, that people should have an opportunity to work for regular wages in the mainstream workforce. And so what ensued from that was a lot of disagreement. And a lot of hold trying to hold on to the sheltered workshop model. Because it was lucrative for those running the workshops, they they got a lot of business, they convinced businesses to bring the contracts to them not to hire people directly. And that continues today to be a major issue. But we have systems have begun to say we are not going to require people to go and work for less than minimum wage to prove they have the ability to work in a regular job, we're gonna give them a pathway directly to a regular job, we're going to, we're going to educate them on why regular jobs could be a good thing for them to get involved in. So you know, we have really moved, but we have a long way to go Still, we have over 100,000 people, I believe in the country who are still paid less than minimum wage. Year after year, we see bills introduced in Congress to end sub minimum wage, and eventually we're going to get there. There's a brand brand new bill introduced now. We will get there. And the main issue I worry about, though, is that we won't be committed to getting people jobs as we move them out a sub minimum wage, will we be committed to making sure everybody moves into competitive employment?
Naveh Eldar 18:34
We're going to get into competitive employment in a second. I had a previous guest, a Barb's a blonde, he was a great advocate. She was a former Miss wheelchair Pennsylvania. And after our recording, she cuz she knows that my background is supported employment, and she didn't know much about it. And she was like, I have to ask, I have to talk to you about something this is I have to re record it. And I was like, Oh my goodness, what's going on? She had a friend who was working at a workshop who did not have a disability. And like you said, they were like assembling things. Right? Now her friend was getting paid, whatever. $10 $11 an hour. But her friend found out that the people with a disability that were working there were getting paid by the unit they put together. So they were making like $4 an hour. And so she was like, do you approve of that? You know, like, she thought I did that. And so I assured her that the program I worked for, was very much opposed to that system. And and we looked at integrated competitive employment, which is something that you help us do and help is a help is not strong enough award. You are the architect of our system here in Tennessee that I work under. So let's get a little bit into integrated competitive employment. What does that mean? I mean, that's the argument. Let me tell you that I still have people that like believe in integrated competitive employment. They cannot say what is integrated and competitive.
Lisa A. Mills, Ph.D. 20:03
Yeah, I mean, the most common phrase you hear is a real job for real wages. But what we stumble over is what does integration mean? What's a real job? Well, for me, it's a job and a place, that if no people with disabilities existed in this world, that place would still exist. And it would still hire people, because its mission is, is something else, it's selling pizza, or making electric cars or whatever, it would still exist. That's an integrated employment situation. And of course, every time you try to create change in our system in our the way we do things, we will there are people who resist change by saying, Well, what if we just took what we're doing now? And kind of made this little adjustment to it? Could that out? And then you say, No, you know, our aspirations are more? Well, what about this adjustment? Well, what about that, and it's always recreating what we're already doing, instead of letting go of that and embracing what the real opportunity is. So an integrated appointment is not just I'm getting paid a fair wage, as compared to people without disabilities who work here or do the same job. And nobody's nobody's time studying my productivity, and pay me based on that, and then paying this person next to me doing the same work, as you talked about, without without a disability, not time studying them, just paying them a fair wage. That's not happening. So real wages that are equitable, but in a place that isn't a part of the mainstream workforce, not what we call reverse integration, where we have a place that's designed for people with disabilities to work, and we bring in some people who don't have disabilities, and then we say it's integrated. That's not, not what I'm not what it's about.
Naveh Eldar 22:02
So yeah, so that's still a challenge that we're having. Another thing that I don't want to skip over before we move on, is this practice of job carving? What is job carving? And when should it be used? When Shouldn't it be used?
Lisa A. Mills, Ph.D. 22:17
So I think now that we have what what we call customized employment. And we talk about job customization, which is much more familiar to businesses, by the way, they think about job customization all the time, we should not, in my opinion, be using job carving anymore, because job carving in the traditional sense, left the employer with a portion of an existing job that wasn't going to get done. It carved out what the person could do, and ask the employer to hire the person to just do that part of the job. Well, that's great for the person. But think about it from the employers perspective, I then have a portion of a job I have no one to do. So job customization is a different approach. It's about negotiating what the job looks like, based on what the person can do not carving a part out of an existing job. And the way you talk about that with employers customization, makes perfect sense to them. So it's about arranging the customization prior to hire. Whereas you know, for most of us, we get our jobs are customized to who we are after we're hired with it, businesses find out our strengths. And ultimately, our positions get customized. This is just about doing that same thing pre hire. So the business is not giving anything up. They're getting something they need from that worker, they're hiring.
Naveh Eldar 23:46
And I wanted to ask who is supported employment used for in 2021? Because it isn't just the individuals with intellectual and developmental disability, right?
Lisa A. Mills, Ph.D. 23:58
No, actually, for folks who, on the mental health side who've experienced severe and persistent mental illness, supported employment has been one of the most effective treatments. And that's been proven through research, that it's as effective if not more effective than taking medication. That it is it can be used as a treatment for recovery. Whereas you might have assumed Well, you can work after you recover, we'll have to you'll have to recover and then you could work. What we've proven through research is that if you introduce work to someone, it accelerates their recovery and it is a tool for recovery. So it's been very powerful. And then I would say people with autism, Asperger's, that folks like that, who maybe do not have a cognitive disability. Support employment has also been really effective for them in terms of getting them the right customized job match.
Naveh Eldar 24:59
I love that you said that I used to be the director of a supportive employment program for people with severe mental illnesses. And our motto for my team was employment as a part of recovery, it's not the reward for it, because that's how it was always treated like, oh, if you take your medicine, oh, if you come to all your appointments, that then we can look for a job. But it was, it was a part of their recovery. And an important part, like you said, so I'd love that. So you helped to transform state, Medicaid and vocational rehabilitation systems. So tell us about some of the states you've worked with, and some of the changes that you've made in those states.
Lisa A. Mills, Ph.D. 25:39
Okay, so I thought I'd start with Wisconsin, my home state, because one of the two of the things I'm really proud about is that we revise the definition for the service that used to support people in sheltered workshops called pre vocational services. And I was part of revising that and writing that, and that was prior to the federal government doing anything around that. And we were able to define that the purpose of that service to get people to regular jobs. And that was really groundbreaking. That was the first time in the country that, you know, you'd seen a state change a definition like that. So happy about that. And also on the VR side was part of creating the first set of VR milestones for Customized Employment again, long before it became required that VR offer customized employment. So we're very excited about that. I moved on to work in the District of Columbia, Washington DC, on creating really individualized community based supports outside of a day program that would link people to employment as an ultimate outcome. And that was wonderful to see what could happen in Washington, DC, when we started focusing on the opportunities outside of day programs had about five years I worked with them. I then ended up in Tennessee. And of course, you know, a lot of that story, but had a chance to take all my learning around employment, and how do we get there and really design a set of services that would meet every person where they were at with employment, help design, a program that had a priority category, that said, if you want to work, we're going to give you priority access to the program, and, of course, worked with all of you and provider community to really put that in practice. I work also in Oregon, five, probably five years in Oregon, and they created the first what we call integrated employment path services, which say, we never, people do not have to go to a workshop at all. We can help people prepare for employment in the community, we can do that in the community, that's the best place to do it. And while we're helping them find a job, we can be working on skills. So that was wonderful. I also helped Oregon create their outcome based payment structure where they they pay for support employment services based on how many hours people work. So they really motivate best practice and people working as many hours as possible. And I did that same thing in Michigan, helping Michigan's county based system to look at how to pay for performance and supported employment.
Naveh Eldar 28:37
I've read that you have worked in with over 20 states in some capacity. And I was like, you know, this is why I believed it. Like when I Well, first of all, of course, I would believe it. But this is why I was I was not surprised at all. I was at a conference in Arkansas. And I was presenting at their absi conference. And lo and behold, they start talking about you. So I'm like, Oh, yeah, I know. Lisa, she you know, she's she's helping us in Tennessee. And so they're they're wonderful, Lisa, this and Lisa, that. Then I'm at a national conference in Baltimore. And it just, it's just a national conference. And all of a sudden somebody starts talking about Lisa Mills. And I'm like, Oh, I know Lisa Mills. So again, we start like gushing over you again. So it's, it's really unusual and impressive that you can go to different states in somebody's name, and this field just pops up all the time. So you I don't know if you know it, but you're somewhat of a celebrity. So what what are some of the differences between the states or do you see much of a difference? Do you have some states that are all about it and some states that are just very reluctant or how does that work?
Lisa A. Mills, Ph.D. 29:48
So I would say the biggest difference I have noticed is states that had lawsuits to close their institutions versus states that did not and how recent those lawsuits We're while I don't disagree that lawsuits were likely necessary to move things forward, I think they create a certain momentum around change. That is, we are trying to comply with a settlement agreement, we're doing this because the court tells us we have to. And unfortunately, that's a really different process of change that a state that decides itself, it wants to move people out of institutions, it wants to close sheltered workshops. And, and so the states that had did not have lawsuits, there's much more of just a sense of understanding of why we're doing what we're doing and why it's important and the buy in, at every level. They've done a lot of work to bring people along, because it was never forced. And I just don't see that always in states with lawsuits, I see a lot of money getting spent, there's no question that states with lawsuits end up spending a lot of money. But But if the heart and soul piece isn't there, you get you know, you get the the outcome, it looks like what you want it but the buy in that you really need to make it real maybe isn't fully there. And so you've got to work on circling back and bringing people along about the why that is something other than because of the lawsuit.
Naveh Eldar 31:32
What is the most challenging part of establishing a brand new program? Because let me let me tell people who have never been involved, the amount of work and details is astonishing. I mean, it's what are the services? What are the rates? Who's going to qualify? What are going who are the staff are going to do it? What are their qualifications have to be? And it has to be detailed? It can't be some vague statement. So it's just like, it's almost like an encyclopedia is needed to create a program. And it's something I don't think people understand. And you had a huge part in the one established in Tennessee, but was there one area that was just super challenging to get through?
Lisa A. Mills, Ph.D. 32:16
Well, I do, I do think all the unfortunately, all the rules we have to write for the program. And it's very sad that to some extent, we were always writing rules to be for bad actors, you know, and the the minority and so then we, you know, we have to make up all these rules, just in case we have one bad apple in the group. So I that's really hard, because you don't want to do that you want to design a program based on the assumption that everybody's in it for the right reasons. But I do think, you know, working out rates, working out what we call service definitions, working out all the policies, because when you roll out something new, you get a lot of questions. And all those questions whether they come from the federal government, who's going to give you a lot of the funding, but they're, but they need to prove what you're going to do, where they come from stakeholders, people with disabilities, their families, you've got to have answers. And so that become it becomes very complex to anticipate everything, and have an answer for it. I'm doing this right now with at the state of Alabama. And so it's interesting, you asked that question, because we are in we are buried in the details of trying to launch a new waiver program right now. So it's a tremendous effort. And that that's the issue with states and them having bandwidth to make the kind of changes they need to make many states or state governments. While we might not know this are terribly under resourced in terms of people power. And so they will see I have gone to states and showed them what could be done to make things better. And they will say, that's great, but we don't have any resources to do it.
Naveh Eldar 34:06
They see the value in it. And they're just like, we just can't do it. Well, we're going to come back to Alabama in a bit. Alabama is becoming one of my favorite states, by the way, for different reasons. I did something I did not know about you, because I've known you for a few years. And I've bothered you for a few years, because you are one of the few people if I can brag on you again, as I as I've been doing through the episode, that if I have a question, I'm like, you know, who can I ask? You know, it's I love my colleagues here in Tennessee that my counterparts who you know, as well, john and Tina and Stephanie, but sometimes all of us have a question and all of us go, let's shoot an email to to Lisa see what she says. So but what I didn't know about you is that you did work with the UK as well. What in the world did you do over there?
Lisa A. Mills, Ph.D. 34:57
Well, I got my PhD over there. Believe it They're not and I lived over there for eight years. So I was not a tourist, by any means. And I worked on moving people out of institutions. And so at the time in the early 90s, that's where things were, I was in Scotland, at the University of Edinburgh, but working for an organization that was created to close the institutions in its area. And so got to work. On person centered planning the rollout of person for the first time anybody doing personnel planning got to work on helping people find housing, helping people get connected to their communities. And people who'd been in institutions for 4050 years, helping them find a home of their own. And just watching that process unfold was amazing. I had a guy who he was 53. And he had been placed in the institutional way he was three. And I wanted to take him out to get we were going somewhere, I can't remember why we got in my car. And he panicked, because of the seatbelt. He'd never been in a vehicle where he had to wear a seatbelt. 53 years old. And so you know, you just, you can't imagine the kind of impact you can make. Remember the guys that would be at the front, when you come in, and every institution was like this, they'd be reading the paper, you know, there was no, they never should have been there. And helping them helping them find their way to a home and then watching them just blossom. You know, it was amazing.
Naveh Eldar 36:39
Wow, that is fascinating to me, one because I lived abroad for about seven years myself. So I always love to meet somebody who's from the United States that travels abroad and studies abroad. That's amazing. You are also the lead subject matter expert for the US Department of Labor's Advisory Committee on competitive integrated employment of individuals with disabilities. That is a mouthful. And I'm proud that I got through it. You were with them during their first year of deliberation. So what was what was the point of that committee? And what has come out of that committee?
Lisa A. Mills, Ph.D. 37:15
Yeah, so I do want to mention I, I resigned my position as lead SME for them to come and work in Tennessee. Oh, nice
Naveh Eldar 37:25
luck. Yes,
Lisa A. Mills, Ph.D. 37:26
rich, Luke King, who a lot of people know nationally, took over for me. So, you know, he's responsible for a lot of what they did. But this was a national committee that was assembled to really recommend how competitive integrated employment could be expanded for people with intellectual developmental disabilities, other significant disabilities, and to also make recommendations about the future of sub minimum wage. This wasn't the first group that was asked to do that. But it was a group that was hosted by the US Department of Labor. So it had status, it had representation from all over the country. And it's spent two years pretty much deliberating on a whole range of issues. And I just want to read you, I wanted to quickly read you a quote that they put in the beginning of the report, because I think it's so important to understand what you think about well, what difference did that make or this make, it says it's the action that the fruit of the action, that's important, you have to do the right thing, it may not be in your power, may not be in your time that there will be any fruit. But that doesn't mean you stopped doing the right thing. You may never know the results that will come from your action. But if you do nothing, there will be no results. That's a quote from Gandhi. So I think that's really important in our field, because change oftentimes is slow. It's slow, and we have setbacks. And then we then we move ahead, and then we have a setback. And so I think the work of this committee has driven a lot more attention around sub minimum wage, which is was needed and continues to be needed. And I think ultimately, the we will look back, this committee said we have to build capacity, we have to build capacity for real employment, and making it happen for people as we phase out sub minimum wage employment. And it's hugely important because otherwise we will watch people I am convinced, we will take away sub minimum wage and they will stay in those buildings, they will ride on those buses and they will sit there and things will not change for them employment will not result. So that's what this committee did.
Naveh Eldar 39:47
Nice. And I love that quote. I forgot about I have a horrible memory, which if you listen to I actually did an episode where I was interviewed for my show and my horrible memory is explained in that a little bit. But when you Read that quote, It reminded me that not it wasn't even that long ago that I was, you know, really kind of down about some setbacks, as, as you say, and I reached out to you and was asking your thoughts about it. And and you gave me not that quote, but in your own words kind of like that sentiment. And, you know, it was like, you know, you have to keep pressing on, you know, and, and anyway, it really helped. And I appreciate that very much. So, what are you working on right now? Like what's going on down in Alabama?
Lisa A. Mills, Ph.D. 40:34
Well, Alabama has an opportunity. I mean, I want to, I want to talk, I want to, I want to brag on Alabama, for first that they are third, second or third in the country in terms of how many dollars they spend providing services to people with intellectual disabilities that are in community, not an institution, as you talked about, where states that? Well, they are up at the top of the pile with her again, in Michigan, at 100% of their dollars going to community. Now, they had a lawsuit. So what has happened with what is communities is not where they want to be ultimately, and they all know that providers, families, everybody knows what's going on in their waivers now is really not where they want to be. So we got the chance, I got the chance, I should say, to help them with some employment, stuff around employment and more community integration, we created new rates to to create opportunities for community integration, and employment. But I talked to them about cultures change, and whether or not it was possible to do it in the existing waivers or whether a new program might make sense. And I talked about Tennessee's program, and I talked about the different components and aspects of that and why I think I thought at the time, and I still do it can drive culture change. And they said, Why don't we talk to stakeholders about this and and talk to our legislature about it. And for the first time in a decade, the development disability agency got a new appropriation from, from the legislature to start a program like this. So we have been, we have COVID hit. We had a change in administration at the federal level, and we are on the cusp of the approvals, then it's a pretty interesting model. It's not exactly like Tennessee, we were not able to do it like that. But we were able to find a model where we could do it. And we have 500 initially 500 people coming off the waiting list in 11 pilot counties. And already 325 of those slots, people have said on the waiting list, I want to be in the program when it opens. And so we're really happy it has a focus on employment, a focus on community loving, it's been a real hard road. And I think everybody in Alabama would agree. But we are determined to get there. And I think we're just a month or two away now from actually being able to open the program.
Naveh Eldar 43:16
Oh, that is so exciting. That's so exciting. I am really curious what you do, first of all, your skill set is probably one of the most unique skill sets of anybody I've ever met. Because it's it's this beautiful mesh of business savvy and finance and social work. Like who has both of those things on like this really high level. So how did you get to where you are today? What was the path you took?
Lisa A. Mills, Ph.D. 43:47
So first, I'll talk to you about my parents. They are an interesting mix. I think I'm just the blend of them. My father is the business savvy. The there's always a way to make things happen. And my mother is Don't you dare stand for anything. That's not right. And so you put them together and they ended up with me. They wanted me to be a lawyer. I was supposed to be a lawyer. I went to college to be a lawyer. And I got really interested in civil rights, human rights and decided to go into social work. And so what I did in the summer between college and my social work, starting my Social Work course was go work in an Easter Seals camp in Pennsylvania. And that was it for me in terms of knowing who I wanted to work with. So I just so gravitate towards people with intellectual developmental disabilities and I don't know why but I do. And so from there, I pursued my social work degree with an emphasis on that I ended up in Scotland at the University of Edinburgh for an exchange first semester, found people over there so pass About people with IDD and deinstitutionalization. And I said, I'm going back, I'm going back to do the work there, because it just seemed like a good fit. So I, you know, I then I came back to the states and ended up in Madison, Wisconsin, which is where I still am, and work for people first and independent living center. I was an advocate, I was, I didn't want it to be nothing but an advocate. Work for the DD Council is all advocacy. But then the state started saying, well, we like what you're saying, will you help us do it? They weren't. They weren't arguing, they were saying, We need help to do it. Will you help us? And I know some advocates say no, that's, that's not our role. You just need to do it at but I felt like, well, how can I say no parent actually saying they want to do it, and they need help? And I'm going to sit back and say, No, I won't help because I'm an advocate. So I didn't, I said, Okay. And I started to come and work in state, you know, in state government and Wisconsin spent eight years on the Medicaid infrastructure grant. And then from there, was started to get the opportunity to work with other states. And then it just kind of snowballed after that.
Naveh Eldar 46:15
You just never know where you're going to land. Right? And I love, love, love love. I can't say it enough how people that follow? where's the best place for me, right? Like you didn't say, Oh, well, I'm from this state. So I want to stay in this state, or I'm from this country I need to stay in. Because other countries do that. So many times when you talk to professionals, or high level individuals from abroad, they have studied abroad, like from their country as well, like they've studied in Ireland or England or the United States, and gone back to their countries anyway. So that's a great example of how we can take advantage of that, too. So our Do you have it before we get to the fun questions, which we've you've kind of touched on already a little bit, believe it or not, you'll see when we get to them. Do you have any like final words about the importance of supported employment?
Lisa A. Mills, Ph.D. 47:07
Well, I'll tell you a little fun story. My son, who is adopted from Guatemala, is now a supported employment guy. He's 16 years old. We just started working with DVR, he was approved for support employment, his passions are art and golf. He got a job at his favorite golf place, the driving range and golf course and miniature golf. And I suggested that we try coworkers supports which you will probably know because it's in Tennessee's program. And because I didn't really want him to have a job coach hanging around, you know, I thought he didn't need it. I thought he could be supported by coworkers and the owner of the golf place said, Yeah, we'll try it. Let's do it. And it's working. So well. He's because of COVID. And not being in school, he's working in fun hours, or in a mask outside. But he's making money. He's learning how to use his bank account. He's learning of course, golf, everything about golf, and better getting better at golf. But the impact on his life, he now has guys from work who say do you want to go golfing with us, it used to be only his mom's would go around the course with them. He's on a diet because the guys at work are talking about how you beef up to be like the golfers on TV. So I just I can not I the stories are endless about work as a gateway to so many other good things in life. And for people with disabilities, we do the worst disservice to them by assuming for them that they are not capable, or it would not make a positive difference and is not worth the effort. I just won't do that. People love to be known for who they are and what they contribute. And it's interesting with COVID, when you people who are going back to life, most frequently are the people who had jobs, they are needed. They are wanted, they're not losing their jobs. They're going back because their employers need them.
Naveh Eldar 49:27
Right. Excellent. And I'll tell you what else I love about your story. And something I want to highlight is that we talked about being person centered, which is something that we always have to work on to make sure that we're doing a good job and we probably are never doing as good a job as we should be. But typically, even when we put people in competitive employment, competitive integrated employment many times that was in the food industry, or their cleaning or the it's something like this, right? We seem it like at McDonald's or like a grocery store or something. So You intentionally put together services that said, we have to get to the bottom of what the person wants and will enjoy and your son was the perfect example. He liked golf. And now he's working at a golf, you know, course. And I'm like that that is exactly what what we want what we need. And so and you're living it, you worked it and then you lived.
Lisa A. Mills, Ph.D. 50:24
Now I got to teach him to learn how to drive so we can you drop me his driver back and forth to work, but we're gonna see how how he can whether or not he can handle that
Naveh Eldar 50:36
on. Alright, right. So my fun questions. And I'm really interested to hear the answer now that I've heard more about your story. What was a fork in the road in your life that you came to? And it could have been when you were 10 years old, but what was a fork in the road that really took you in a different direction in your life. And the reason I'm interested in one example until you can't use it is that you went to school to be a lawyer. And then you split and became a social worker, but nothing like that. I'll tell you.
Lisa A. Mills, Ph.D. 51:05
Yeah. When I was in high school, I was a three sport athlete, I was most valuable player field hockey, basketball, softball, I was headed for a division one scholarship. And that so all I thought about with college was I'm going for sports. And I had a neck injury in my senior year that kind of led to the the diagnosis about a congenital defect in my neck that nobody knew about. It ended any hope of a scholarship. No, no more scouts came around adware neck brace to keep playing and I did but that's no scouts are from division one schools are better what what else I got. So I decided to go to school for my brain to actually look for schools where where, you know, it was the greatest intellectual challenge. And I ended up going to a really good Division Three, very strong academic liberal arts college. And had I not done that had I gone for the division one sports scholarship, I don't think I'd be where I am at all today.
Naveh Eldar 52:13
Great story. Although I do not like to hear that you got hurt. But I'm very glad that you're on the path that you are now. Last question. If since you have lived already lived abroad, have you thought about living abroad again? And if so, where would you I mean, even if it's just like a fantasy? And if so where would you want to live?
Lisa A. Mills, Ph.D. 52:32
Well, I'll be honest, I met my partner of 30 years in Scotland, well, 30 years next month. So go back all the time, because the other side of the family is there. So I think that our plans are paved, if we're going anywhere, it would be back to Scotland. And we have tons of friends over there friends over there friends forever. They don't, they don't forget. Yeah. But I also have had a long history with Canada from being a young kid going fishing up there. And going every year I could and so we do. We were able to grab a little cottage there that I if you know me in the summers, you know, if you're on a video with me, I'm not in my office, I'm up there. My kids love to fish and my parents are up there and extended family. And so that's the other country that we're very attached to. So the passports are easy to find in this house. And we've always encouraged our kids that they love to travel. So it would be Canada, back to Scotland.
Naveh Eldar 53:46
All right, well, thank you so much for your time for carving out an hour for us and learned a lot and learned a lot about you for sure. So anyway, thank you and keep in touch and and I'm just happy. I'd like to thank Lisa again for all of the amazing work she's done across this country and abroad. In the next episode, I speak with Dr. Justin Baker of St. Jude hospital. As the landscape starts its celebration of National Cancer Survivor month, which is in June. I'll see you then.
Transcribed by https://otter.ai