Lisa Mills is a 26-year disability advocate, employment subject matter expert, a former Public Policy Chair for TASH, a former Ruderman Fellow and Senior Technical Advisor for the Coalition to Promote Self-Determination. Dr. Mills’ focus on advancing integrated employment dates back to 1999 when she became involved with the Wisconsin self-advocacy movement and assisted a group of state self-advocacy leaders to found People First Wisconsin. Much of Dr. Mills’ work is heavily influenced by her experiences with People First; her first experience working with People First Scotland in the 1990s, while living in the United Kingdom earning her doctorate. Currently, she is known for her innovative and extensive work with state Medicaid programs and other state agencies on systems change strategies to support the expansion of integrated, competitive employment for youth and adults with intellectual and developmental disabilities.
Continuing Declarations’ conversation with Dr. Mills, we discuss the “stubborn problem” of advancing integrated employment and the importance of scaling up promising practices and our national advocacy.
Part two of a special two-part interview with Lisa Mills; Oct. 23, 2015
Declarations, the National Advisory Board blog: Senator Harkin has called this a “stubborn problem.” Would you agree?
Lisa Mills: I think there’s no simpler way to put it. When federal and state governments have been trying for decades – funding grants and demonstration projects to the tune of billions of dollars, and private foundations have invested quite a bit as well – yet we have made little, if any, progress, I’d saying classifying it as a stubborn problem makes a lot of sense.
Declarations: What roles does perception play in the stubbornness of this problem?
Mills: Quite a bit. I still run into the perception that expecting people to work, believing people can work, knowing people will be better off if they work—it’s anathema to an unfortunate but broadly-held perception of people with disabilities. And yet I have never encountered a person who didn’t want to make a contribution, who didn’t feel good about being able to be of value to others, who didn’t wish that they could have that opportunity and be successful.
For the most part, people with disabilities may shy away from working because they have fears about being rejected, or not having the support they need, or losing supports that they currently have, which are essential for them to stay out of nursing homes and other institutions.
So I think we have to get comfortable with saying: if it’s good for me and you to work, why wouldn’t we believe that it could be a good lifestyle choice for fellow Americans with disabilities? We often don’t realize how important work really is for us until we experience forced unemployment. People who have been laid off or lost a job – they can tell you how that has impacted their lives, their self-esteem, their mental health, their relationships – then imagine being relegated to that for your adult life.
Declarations: You made a point earlier that change needs to start with a fundamental shift in expectations about individuals with disabilities. What does that look like in practice?
Mills: It may be helpful to think about some of the reforms that have been made around the welfare system. I say that carefully because I know people reading this may take it the wrong way. While welfare reform has not been perfect by any means, and there have been unintended consequences, the fundamental principle is the assistance given is tied to an expectation that we’re trying to get people back to work or into work if they have never worked. For me, it’s not an unreasonable expectation that the public programs we operate are there as a safety net, and we should be at a point in American society where having a disability doesn’t automatically mean you can never live without that safety net—at least the income assistance part of the net.
The safety net shouldn’t be a net that you fall into and then it closes up and captures you. That doesn’t make sense for anyone, or for the government that is charged with operating these safety nets.
We need programs to be structured with the understanding and the expectation that a central part of what they’re trying to do is help people achieve maximum self-sufficiency, not just physically or functionally, but economically. And we know economic self-sufficiency improves health. We know it improves all kinds of things for people.
There are aspects today of these larger programs that support or can support people with employment if people with disabilities actively choose to pursue employment. But we need to move beyond that kind of approach to one that says an essential reason these programs exist is to help people be fully participating members of society—and that starts with gainful employment if you are working age. If we help people with employment, I am convinced the path to the rest of “a good life” will follow at least to the same extent it follows for those already in the workforce in our country.
Declarations: Are you starting to see programs or models arise that have a lot of promise – things in-the-works today to achieve these goals?
Mills: I think what we are doing, or beginning to do, with youth with disabilities in the school systems – supporting that critical period where they transition out of high school – has promise. We lay the foundation for a working life from the beginning. The strategies we’re starting to use for youth and young adults with disabilities are strategies we need to extend to everyone.
Declarations: Can you explain that a bit more – which specific strategies are relevant beyond youth-based employment supports models?
Mills: Most of them. The opportunity to do internships; to do training that has been adapted for real jobs that are available through local employers. The engagement of, and focus on, community colleges, technical colleges and universities in helping people gain skills and credentials. Also, broader efforts to engage employers in seeing the advantages of offering on-the-job training and internships to individuals with disabilities to get them into their workforce—I think those are all key strategies.
We’re recognizing now that the workforce needs of businesses are changing. Americans who are out of work don’t necessarily have the exact skills and training that businesses need – the businesses that have the jobs. So there is a skills and experience gap between available workers and what businesses need to grow and succeed. People with disabilities are much like the rest of Americans who are not currently employed—they need training or re-training and opportunities to learn-by-doing, which also gives them a chance to show businesses what they have to offer.
So in general, there’s a broader need for training, retraining and on-the-job training that businesses are embracing. People with disabilities can and should benefit from that. It aligns really well with what people with disabilities need to enter the workforce and make a valuable contribution.
Declarations: Is there something foundational about what is being done to support youth and young adults, too, which should be extended broadly?
Mills: Yes: the expectation that employment – gainful, competitive, integrated employment – is the goal and it’s an expectation we need to have for all working-age people with disabilities. My 11-year-old son receives special education services. Last year, for the first time, during his IEP, they asked us about our aspirations for him after high school. It was a multiple choice question. We were asked if we expected him to go to a four-year college, a two-year college, a technical school, to just get a job or if we expected him to stay at home with us and not work. Of course, I said we expect him to go to a four-year college but I was almost tempted to say the opposite to see how they would have handled that. I think the question was being posed because they wanted to be sure parents are adopting high expectations when kids are young—that is so critical. I was really glad the question was being asked when my son was just 11 years old.
Declarations: Are there pockets of innovation that might be leveraged nationally?
Mills: In almost every state, you can see innovation. You can see things that are working. For example, the city of Seattle has a long history of actively recruiting and employing individuals with intellectual and developmental disabilities. They have an embedded supported employment initiative. And beyond Seattle we can see other municipalities stepping up around the country.
State governments also are being intentional with hiring initiatives that are paving the way for more individuals with disabilities to be employed in state government. So, too, is the federal government, under the Obama Administration’s challenge to increase the percentage of people working on federal contracts who have a disability.
Government should lead by example, but I want to make it clear: this ultimately should lead to mainstream businesses doing the majority of the hiring of people with disabilities.
Project Search is a model for transitioning youth with disabilities from school to gainful employment. It has very high success rates. Certain states are investing in creating more Project Search opportunities, versus other states with just one or two sites. You can see where investments are being made in certain states to really ramp up the number of people with disabilities who can benefit.
Declarations: Is there a common thread running through the more successful initiatives?
Mills: Yes. While there’s a lot that can be done, it takes a targeted effort, a concerted approach. We have to get away from demonstrations and pilots. We have to start taking things to scale because we have high numbers of working-age individuals with disabilities who are out of work, who are not engaged in good, gainful employment.
If we don’t take things to scale, our efforts – however successful – really are a drop in the bucket.
Declarations: How do we get to scale and, in the process, turn up the volume on this issue and this challenge?
Mills: This is not something for the faint-hearted. But it’s probably the most important civil rights advancement we could possibly make with and for fellow Americans with disabilities.
We all need to increase the effort, and – at some point – say (and this is for states and federal governments) that no matter how many other competing priorities we might have, no matter how many crises and issues arise, we will not let employment be set aside.
This is when we’ll start to be held accountable for improving outcomes and we’ll be in a position where it’s not possible to set this matter aside.
We think about the general workforce and the unemployment rate as being a crisis. At some point, we have to think about people with disabilities and unemployment as a crisis—an unacceptable crisis.
Lisa A. Mills, Ph.D., is the public policy chair for TASH, senior technical advisor for the Coalition to Promote Self-Determination, and a senior consultant with Marc Gold & Associates. Dr. Mills has worked in the field of intellectual and developmental (I/DD) disabilities for 26 years. Her work on integrated employment spans the last 15 years, beginning with grassroots efforts as part of her role supporting the People First self-advocacy movement and culminating in extensive work over the last seven years with state Medicaid and vocational rehabilitation (VR) agencies on a broad range of systems change strategies to support the expansion of integrated competitive employment for youth and adults with I/DD. In 2002, Mills developed one of the first truly self-directed career planning processes for individuals with I/DD.
In 2006, Mills authored a widely read report, entitled Revitalizing Integrated Employment, which documented nationwide best and emerging practices to support increased participation by people with I/DD in integrated employment. From 2007-08, she was lead staff to one state Medicaid agency’s broad-based taskforce on integrated employment, which led her to managing millions of dollars in systems change funding to implement a variety of innovative best practices that included: CRP organizational change initiative; employment outcomes data system; performance-based supported employment reimbursement model; and, the first national example of successfully embedding Customized Employment services in the state VR and Medicaid long-term care systems. From 2009-10, Mills was primary author of one state’s rewrite of its home and community-based services waiver employment service definitions. Her development of a revised definition of prevocational services informed the changes made by the Centers for Medicare & Medicaid Services in its Information Bulletin on Employment released September 2011.