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 (CPSD). 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.
To mark National Disability Employment Awareness Month in true Blog fashion, Declarations sat down with Dr. Mills to discuss integrated employment as the “next great Civil Rights challenge” to address, and how we’ll know when we’ve gotten there (spoiler: when commemoration of disability employment is no longer limited to one month, or one day, of the year).
Part one of a special two-part interview with Lisa Mills; Oct. 21, 2015
Declarations, the National Advisory Board blog: In the last five to 10 years the emphasis on employment has just exploded. What accounts for this new focus?
Lisa Mills: I think everybody’s realizing that without access to this piece of opportunity in America, we will continue to fall short of ensuring people with disabilities experience full equality and full civil rights.
Declarations: How does this “new focus” relate to National Disability Employment Awareness Month (NDEAM)?
Mills: Advancing integrated, competitive employment – for those of us who have embraced this as the next major civil rights advance we must make in American society – it is much bigger than NDEAM, though NDEAM is an important initiative.
For the most part, our country has come a long way with the first major civil rights challenge facing people with disabilities. For the most part, we have focused on discontinuing institutionalizing people and we have begun ensuring people with disabilities have the support they need to live in their communities. Yet among the states that have done so much around community living, they are still, in most cases, falling short in terms of employment.
This tells me that employment is the next great civil rights challenge we must address. I look forward to the day when disability employment is not commemorated once a year, but when it becomes something that’s a priority focus of what we do as a society and a priority for what we do with public funding in relation to supporting fellow Americans who happen to have a disability.
Declarations: You mention public funding. How critical is that to the integrated employment conversation?
Mills: What we do with public funding is incredibly important. In 2011, researchers with Mathematica estimated 2008 federal spending on supports for working-age adults with disabilities totaled $357 billion dollars. What the 2008 data suggest is that we spent only 1 percent of that $357 billion on education, training and employment support. So it seems clear to me that what we have done is build an entire system that presumes people with disabilities will not work.
And we have shortchanged people with disabilities as a result, because while we spend that very, very large sum of money nationally, we essentially relegate people with disabilities to lives of poverty. They live in poverty at a rate that is three-times higher than people without disabilities. The high rates of unemployment have a lot to do with that, of course.
What’s even worse: we give them no way out of poverty. In fact, sometimes, we insist they remain impoverished in order to get supports. Now, I do acknowledge there have been a lot of what I call “Band-Aid” initiatives where we tack on special options to Medicaid and Social Security programs that otherwise require poverty. These special options are supposed to reward people for going to work; but there has been very little success. The fundamental issue remains that in order to get supports from the government the criteria aren’t that I have a disability which causes me to need more supports than you to live and to participate in society and work; the criteria are that I have to prove that I can’t work.
People with disabilities suffer greatly in terms of their quality of life. They don’t suffer from their disability; they suffer from the poverty, unemployment, isolation and disenfranchisement that our public systems inadvertently create. And we, as a country, suffer in terms of what we are foregoing that people with disabilities could otherwise contribute to our economy and our communities, if we adopted a fundamentally different approach.
Declarations: Would you say, unfortunately, this is still a niche issue within the disability advocacy space?
Mills: Yes, we could go a long way to solving all of the other problems that tend to get prioritized by advocates if we ensured people with disabilities had access to the supports they need to work.
When I am in poverty, when I am totally dependent on public systems, I can’t do much to ensure I have the supports I need. When people work, when people have income, when people are of value to others and to the business world in particular, I think that is when people will be more likely to be ensured access to the supports they need. And I think we need to fundamentally appreciate that people with disabilities are key contributors in our society. Then, we will find the supports will be there because they are filling vital roles.
We can’t fight forever on a platform of, “don’t cut back the programs” and “how do we get more money in the programs,” because there are waiting lists and an ever-growing number of people eligible for these programs. We have to solve this holistically. I think there will be (and to some extent, there already is) a lot more willingness to invest in public programs that enable people to achieve gainful employment, to achieve greater economic self-sufficiency, and to make a meaningful contribution to society. And I think these are outcomes that people with disabilities want for themselves as well.
Declarations: You shared earlier that integrated, competitive employment is a year-round, lifelong focus for many, while for others it may only be a month or a day at this point. How do you think NDEAM can be leveraged to sustain a national focus on this issue?
Mills: I would like to see NDEAM become a kickoff month to an annual campaign that – each year – would take up a certain aspect of this civil rights challenge and through this approach, maintain an ongoing focus on the goal. We have learned through prior efforts that the outcomes and benefits of short-term, limited-focus efforts don’t sustain themselves over time.
I think everyone who works on disability employment has realized that we’ve been working on it for a long time. It’s been on the radar and part of our thought processes for a very long time. But the needle is not moving––we are not gaining ground. And so people have come to the conclusion that it will not move until we figure out how to make it a high priority and an ongoing priority that we never set aside.
Declarations: How do we get there, to a shift in the dialogue from focus to priority?
Mills: Former Senator Tom Harkin (Iowa) said in July 2012 (and again in September 2013)that employment is the one goal enshrined in the Americans with Disabilities Act (ADA) for which we have very little to show despite passing the civil rights law in 1990. He believed that employment had to become a national priority, if we were to ever going to realize the vision and intention the U.S. Congress had in passing the ADA.
Making employment a national priority requires government and every American to believe three important things:
1. people with disabilities are capable of working,
2. people with disabilities will understand and want the benefits of employment
once we remove the barriers we’ve put in front of them, and
3. as a society, we’re better off when everybody is in the workforce.
I don’t think we will make serious progress, or make employment a true national priority unless we go forward with these three tenets guiding our efforts.
Declarations: We’ve talked a little bit about the underlying systems – Society Security, Medicaid, etc. – from a funding standpoint. When we think about the incentives or disincentives it creates, we’re really talking about structural issues. Where do you start when the problem is the system?
Mills: We have learned over the last 10 to 15 years in particular that a lot of small fixes do not effectively address this problem. We’ve frankly spent tons of money and time learning that hard lesson. What we need is major reform and I think the writing is on the wall that there are now many reasons for major reform to come to Social Security and Medicaid. The most obvious incentive for members of the U.S. Congress is that the programs are not financially sustainable going forward. But the question remains whether reform will be progressive or regressive. We can’t be so worried about losing what we have that we create a situation where the kinds of changes we need are not made.
We have a tremendous opportunity coming out of one of the largest economic recessions. It seems everyone in politics, state governments, workforce development systems and the business world is talking about job creation and “putting America back to work”. We’re all talking about building up our economy again and growing business. The question for me is whether people with disabilities will once again get left behind, or whether they will become part of the solution––part of the group our country is focused on getting into good jobs.
There is significant investment in job training happening right now. We can’t miss this opportunity to ensure people with disabilities are a central part of that overall effort in our country. It seems every unemployed person is in need of retraining to meet the needs of businesses going forward – it’s a perfect time to include people with disabilities in the nation’s workforce development efforts.
Declarations: Some have said: “The disability employment rates are low because of the bad economy.” How would you respond to that?
Mills: We can look back at the booming economy of the 1990s and disability employment rates were not much different than today. This is a somber lesson. Even with a booming economy, we weren’t able to leverage this to significantly increase the employment rate of people with disabilities in our country. We can’t let that happen again.
It’s not about a good or a bad economy.
It’s about what we do with a good economy and how important it is to ensure Americans with disabilities get support to either go back to work or to go to work for the first time as part of our nation’s economic recovery.