Alison Barkoff is the Director of Advocacy at the Center for Public Representation in Washington, D.C. She works on policy and litigation related to community integration and inclusion of people with disabilities, including Olmstead enforcement, Medicaid policy, employment, education and housing. She serves as a co-chair of the Long Term Services and Supports Task Force of the Consortium of Citizens with Disabilities and is the policy advisor to the Collaboration to Promote Self Determination. She leads the HCBS Advocacy Coalition and the Coalition to Advance Competitive Integrated Employment. Ms. Barkoff also served as an appointed member of the federal Advisory Committee for Competitive Integrated Employment of People with Disabilities. From 2010 to 2014, she served as Special Counsel for Olmstead Enforcement in the Civil Rights Division of the Department of Justice. In that position, she led the Division’s efforts to enforce the right of individuals with disabilities to live, work and receive services in the community. During her time with the federal government, Ms. Barkoff also worked with the Centers for Medicare & Medicaid Services on finalizing rules governing Medicaid-funded community-based services and with the Department of Labor on implementation of new fair wage rules in Medicaid-funded disability service systems. She has previously worked at the Bazelon Center for Mental Health Law and at a number of other public interest organizations on Olmstead enforcement, disability discrimination, Medicaid, employment, and special education cases. She has an adult brother with an intellectual disability and has been involved in disability advocacy most of her life. She speaks nationally and publishes articles on disability and civil rights issues.

Serena Lowe is the founder and prime consultant at AnereS Strategies LLC and is currently serving as the Interim Executive Director of TASH. She has spent the past 23 years focused on public policies aimed at improving the wellbeing of low-income working families, individuals with disabilities, seniors, children, immigrants, refugees and populations with multiple barriers to the economic mainstream. For the past eight years, Serena has served as a Senior Policy Advisor focused on disability rights at the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP), and more recently at the Administration for Community Living within the U.S. Department of Health & Human Services.

Prior to ACL, Serena worked in a variety of roles in the field of federal government relations, working for the U.S. Department of Labor, a Fortune 100 global biopharmaceutical company, a top 20 national lobbying firm, and two former Members of Congress. She is a past Executive Director of the Collaboration to Promote Self-Determination (CPSD).

Serena holds a B.A. in International & Public Affairs from Westminster College, a joint-graduate degree (M.P.H. in International Health Policy and M.A. in International Development Policy) from George Washington University, and a PhD in Public Administration from American University.

Announcer: Today’s podcast is a joint episode of TASH Amplified and YES! To Employment. It is part of a series of podcasts, blog posts and social media that TASH and the YES! Center are producing in recognition of National Disability Employment Awareness Month, or NDEAM. To see what else we are doing, search for the #NDEAM or #NDEAM75 hashtags on social media. Today TASH’s interim Executive Director, Serena Lowe talks with Alison Barkoff, who is, among many other things, the Director of Advocacy at the Center for Public Representation. They have a wide-ranging discussion of employment policy and programs for people with disabilities, but Alison remains rooted throughout in her experience as a sibling to her brother with disabilities, Evan.

Serena Lowe: It is my enormous pleasure to have a great friend of mine, Alison Barkoff, on today’s podcast in honor of the National Disability Employment Awareness Month, sponsored by the U.S. Department of Labor. And we’re just so excited to have Allison. For those that don’t know Allison, she’s currently the Director of Advocacy at the Center for Public Representation here in Washington, D.C. And works on a myriad of policy and litigation issues related to community integration and inclusion, including Olmsted, Medicaid issues, employment, housing, and education. But she has a vast and very long record of being a tremendous advocate of individuals with differing abilities here in Washington and throughout the country. Just a couple of other things about Allison: she was appointed to serve on the federal advisory committee for competitive integrated employment of people with disabilities. And also is a co-chair, currently, of the longterm services and supports taskforce of the consortium of citizens with disabilities. She has testified before Congress and the us commission on civil rights regarding individuals with disabilities and employment. And from 2010 to 2014 served as special counsel for Olmsted enforcement in the civil rights division of the department of justice where she led a number of efforts to enforce the rights of individuals with disabilities to live, work, and receive services in the community.

I’ve known Alison for a number of years and have had the great pleasure of basically walking in her, in her shadow and really trying to hold on to her coattails as she has really, I think, elevated the national conversation here in Washington about federal civil rights and policies that are really intended to create a pathway for individuals with significant disabilities to be a part of the generic workforce and economic mainstream. We’ve had an opportunity to work in the federal government together. Alison worked both beyond just the department of justice, has also spent some time at the centers for Medicare and Medicaid services and also with the department of labor. So I just want to I thank Alison for coming on the podcast today with me and say welcome.

Alison Barkoff: Thanks so much, Serena, for having me. I’m excited to have a conversation. With you today.

Serena Lowe: Likewise, likewise! Well I saved a little bit of your bio for you to tell us a little bit about your background in terms of how you got into this work and into the field of disability civil rights and your personal perspective and connection.

Alison Barkoff: Sure. Well, I’ve had the fortune of calling myself a member of the disability community for almost 40 years and 40 years ago when my brother was born, the world was a completely different place. People with intellectual and developmental disabilities, like Evan, were told there’s no place for you in society. Everyone like Evan for the most part was put in institutions and families were told the best thing for them and for their typical children would be to put their child with a disability away. I was really lucky that my parents said “no”, and they really wanted the same thing for Evan as they wanted for us. And they were really on the forefront of, you know, having a vision that did not exist at the time, thinking about what inclusion looks like in every aspect of life. Now, Evan was the first generation of kids who had a right, a civil right, to attend school. It’s kind of hard for me to imagine thinking back in someone’s life who isn’t really that old, that kids with disabilities were not even allowed into schools a generation ago.

And there was no such thing as community-based services. There is no such thing as employment for people with disabilities. And my parents really – every single thing and every expectation and aspiration they had for me and my sisters, they had for Evan. And I think most importantly, the thing that I’ve learned from my family and most importantly from Evan is how important self-determination, how important self-advocacy is. And I’ve had the pleasure of being part of policy change over the last 40 years with a guiding light of: people with disabilities want lives that look like people without disabilities. They want a job, they want friends, they want to be a valued member of their community. They want to make choices for themselves. They want to try things and have a right to fail. And so that’s really been my approach to disability advocacy.

Serena Lowe: Wow. What a great story about Evan and his journey and the power of a family and personal supports that we all need right along our path and our journey and life. That’s great. I, you know, I’m going to switch it up here a little bit based on, kind of, that background cause I know in your work you’ve had an opportunity to collaborate at a state level with a lot of local communities, with many state protection and advocacy entities, with councils of individuals with developmental disabilities. And you’ve worked with these groups to really help state governments think about how they’re investing in individuals and in services and making sure that they are strategically focusing resources toward creating competitive integrated employment options for individuals with significant disabilities. In your mind and based on the experiences you have, what do you think are the top two or three barriers that continue to stifle or impede individuals with significant disability from seeking and obtaining employment in their communities?

Alison Barkoff: So, I think there are a couple barriers that remain. You know, I think one important thing – and so much of my work is not only to, kind of, do the inside DC policy work, working with Congress and working with federal agencies – but where the rubber really hits the road is that disability service systems. So I think one big barrier that I see is, you know, we have this, kind of, this general agreement and federal laws that really are about prioritizing competitive integrated employment. And we have at a state level, a lot of, you know, philosophy around employment first, but we haven’t yet seen systems and the supports that help people get jobs change along those same lines. Most States, despite having these employment first policies, when you look at what is their actual capacity for supports most money and most providers are in congregate day services, things like sheltered workshops or day habilitation and such a small piece of the service system is really about helping people get real jobs at real pay out in the community. So this lack of access is really a big issue that we need to keep working on.

The second thing is I think we haven’t quite changed expectations. So I work with so many families and an important part of my work is with families and young families and with self-advocates. And so many people understand the importance of inclusion in schools. We have an almost every school district I’ve worked with, inclusion task forces, those mama tigers who are fighting to have their kid in a regular classroom. Yet, they’re so focused on school, they don’t think about the adult system. And there is literally a cliff that people fall off, from the special education and employment system into the adult system and people get there and they don’t know that this kind of fight for inclusion has got to continue. They’re kind of told, “well, we have a program for your son or daughter” and they don’t know that they should be saying, the same way they did for their kid’s entire career, “Nope, you know what my expectation for my other kids is: they go to college or they get a job and they support themselves.” And so they don’t know to push for inclusion and for real employment. So that’s a big barrier we’re still working on. I literally talk to kindergarten parents and say, start planning now for adult life, start thinking about employment, start thinking about independent living.

And then I’d say kind of the third piece that is a big barrier is, we have a system that is set up so against employment in many ways. The only way people with significant disabilities can get supports, and supports that they would need for employment, is typically through the Medicaid system. And Medicaid is a program that is about giving healthcare to people in poverty. Poverty is a requirement for it. So, you know, people fight so hard to get these home and community based services. And they spent decades waiting on late wait lists, and then they get there, they get the supports, and then they realize, Oh my God, it’s so hard to figure out. If I work, what does that mean? Am I going to lose access to all of these critical community services? How do I navigate these asset limits and these other barriers? And, you know, there are ways: there are special Medicaid buy-in programs. We really need to be thinking about financial planning. And frankly, we really need to rethink our entire healthcare system because Home and Community-based Services should not be tied to having to live a life of poverty. But it’s really complicated. And sometimes families and self-advocates themselves get really confused and they think it’s just too complicated.

I mean, to make it real, my brother had a long-time job. It was a great fit for him. He was engaged in competitive integrated employment. And because of COVID-19 he and many, many of his peers were furloughed. He was really able to pivot and because he has this long history of work and he has great supports and he self-directs his employment supports, he actually was able to find another job. And we had to spend so much time before he took this job, negotiating down his salary. We literally had to do the math to figure out, okay, how many hours a week does he need to work to be able to get employment benefits, but how much could he be paid and not lose his Home and Community-Based Services waiver, the supports that help him live independently and give him transportation and give him medical supports that he needs. And it just hit home. We are in 2020: this is a family that is a family of disability advocates. We are all about competitive integrated employment and inclusion and community living. And we had to go in and negotiate down a salary. And I think that just spoke to me about, we have big systemic changes that we need to make if we want people with disabilities to have careers, just like everyone else.

Complete transcript forthcoming

This interview was originally recorded on 6 October 2020.

This transcript has been lightly edited for clarity.