Feature Issue on Disability Rights, Disability Justice

Since we began closing our public institutions in the 1970s, direct support professionals have made community living, participation, employment, and belonging – the critical outcomes demanded by the Disability Rights and Disability Justice Movements – possible for people with intellectual and developmental disabilities. Providing direct support is highly complex and requires significant skills, including sound judgment, independent problem-solving, ethical decision-making, behavioral assessment, crisis prevention and intervention, and communication. Despite the essential nature of this workforce, the average hourly wage for DSPs is $14.50, with an annual turnover rate of 43.3%, according to 2022 National Core Indicators data. In real dollars, wages for DSPs have decreased over the years, and workforce shortages threaten the health and wellbeing of the people with disabilities they support. Can unions make a difference? DSPs, people receiving supports, and leaders of service provider agencies came together recently for an open discussion on the topic. Discussants included Tom McAlvanah, retired executive director of the InterAgency Council of Developmental Disabilities Agencies, Inc.; David Mulvey, a consultant representing unionized workers in California’s developmental disability system; Barry Simon, president and CEO of Oak Hill, a provider of services to people with disabilities in Connecticut; Sumer Spika, a PCA and union organizer for home care workers in Minnesota; disability rights advocate BJ Stasio; direct support professional Mike Taylor; and Nikki Villavicencio, disability culture leadership specialist at Advocating Change Together in Minnesota. The discussion was moderated by Jerry Smith, marketing and communications director for the University of Minnesota’s Institute on Community Integration.

(clockwise from top right) Tom McAlvanah, Sumer Spika, Mike Taylor, Nikki Villavicencio, David Mulvey, Barry Simon, and Jerry Smith. (center) Janet Stewart

Jerry Smith: BJ, I know that you've struggled with finding and keeping qualified DSPs over the years. What do DSPs need to make direct support a viable career?

BJ Stasio: Well, first they need wages commensurate with what they do, and they need support from the organizations that hire them. Not just fair pay, but being understanding when life issues happen. Without the direct support professionals who support me, I wouldn't be able to do the advocacy work that I do for people with disabilities. So, it's not only them working for me, but it's a team effort and they make Team Stasio work. Without them, I don't work and what I do doesn't work, so I appreciate them.

Smith: David, deinstitutionalization – moving from segregated institutions to community living – is often considered one of our greatest human and civil rights achievements, and yet it was opposed by unions. How does that square with the unions of today?

David Mulvey: Well, SEIU (Service Employees International Union) took on this issue a few years back when we endorsed The Community Imperative [a 1979 a declaration supporting the right of all people with disabilities to community living, reissued in 2000] as a way of stating what our position was as we fought to make sure that workers in institutional jobs could continue their careers outside of an institutional setting. In California we set up small, state-run homes so that workers could continue in their state employment even though they were working in a community-based home. We used those tactics to help address the resistance of the people who were working in state institutions at the time to the closure of those institutions. SEIU has been a very active partner in the process of deinstitutionalization in California where we're now down to a single large institution for people with forensic involvement.

Smith: This was not the case in New York in the 1970s. Tom, how did you view the role of unions within the emerging deinstitutionalization movement?

Tom McAlvanah: Well, I certainly believe that they were looking to preserve the jobs of those folks who worked in the institutions. [New York has both state-run (unionized) and private not-for-profit residential services.] Today, about 90% of services for people with developmental disabilities are done by private, not-for-profit agencies. I admire the ability of unions to advocate for their workers, especially in the public sector. And there have been some unionization efforts over the years in the private, not-for-profits, though it's been very splintered. There was resistance to community living by the unions, which is in one sense understandable, but not necessarily compatible with the interests of people with developmental disabilities who wanted to live a more independent life.

Smith: I know you've worked for years to elevate the status and increase wages of DSPs. Even with many provider agencies, DSPs, family members, and people receiving supports rallying together, progress has painfully been slow. Adjusted for inflation, wages for DSPs nationally are lower now that 10 years ago. Is it time to work with unions, or some other coalition, to have a more powerful voice and make a significant change?

McAlvanah: We have different unions representing different bargaining units in different agencies. Last year, the not-for-profit agency sector providing most of the services received a 5.4% cost of living adjustment. The unionized state workforce, doing the same work, received a 13% raise. So, there is certainly a dramatic difference. And could the unions help us? To date they have not. It has been the advocacy of the private not-for-profit agencies, parents, and self-advocates like BJ coming together to push the efforts forward. Sometimes we have worked with the unions of some of our agencies, but they've not been able to exert any extra influence that has made a real change.

Smith: I want to note the different terms that we use to describe disability support workers. In the IDD world, we use the title direct support professional, a term that was coined about 25 years ago to acknowledge the multidisciplinary roles required in supporting people with IDD, going well beyond caregiving. Sumer, I believe your title is PCA – personal care assistant. Many PCAs in Minnesota are unionized and make a much better wage than DSPs. In what ways has your union helped you and the people you support?

Sumer Spika: Soon after I started working as a PCA, somebody knocked on my door and asked, “What do you think about unionizing home care workers?” I was very pregnant with my third child and my spouse at the time had just been diagnosed with MS, so he was not working. I was making $10 an hour and needed to make more to provide for my family. So, I said, “Hey, let's do it. We’ve got to do something.” And that was 10 years ago. Our last contract was $15.25, and with a new contract starting January 1st, the wages go to $19 an hour. And there's a wage scale depending on your experience, so I will make up to $22.50 an hour. Increasing wages is the number one priority to get more people into the workforce.

It has been very important to us from the beginning that the people we are supporting are part of these conversations. They are the ones most affected by these changes that we're making.

Smith: Sumer, one issue that comes up often when discussing unionization is the potentially catastrophic effect a strike could have on people with the highest support needs. How has your union responded to using this tactic?

Spika: The people we support must get the care they need. So, it is not an option for us to strike.

Smith: Doesn’t that remove a powerful tool for negotiating?

Spika: It does, but we have lots of other tools that we can use. We're working hard on making sure that we are building relationships with our legislators. Minnesota Governor Tim Walz came to my house for a day and helped one of our PCAs that cared for my ex-husband. He gave him a shower, he got him dressed, brushed teeth, all those things because we really wanted him to understand the work that we do and the impact it has on the people that we care for. That's one of our most effective tools.

Mulvey: What we gained when we gave up the right to strike was a powerful partnership. We built this partnership with the people who are receiving services and the people who are providing them. And it was a big step. I think California was the first place that made that arrangement and it led to unionizing the entire workforce here.

The bFair2DirectCare campaign, New York state capitol building, 2019.

Smith: Mike, as a DSP working in New York, what has your experience been with unions?

Mike Taylor: I believe there is a role for unions in the business sector, but a lot of times unions keep bad people working. If you're a good employee and you're doing what you need to do, you don't need a union. In a not-for-profit organization, without the ability to strike, a union has no credible means to force anything. There's nothing a union can do for a DSP because our money comes from the state.

In New York, if the state says you're going to get a 2% raise, we get a 2% raise. The union can't affect that. When I started with my previous company, I had no-cost insurance. That's why I went there. By the time I left, I was paying $300 a month for insurance, plus $70 every two weeks in union dues. How did the union benefit me? The only thing a union can do in New York State is go with you to a labor dispute and dictate what the labor laws are. Without leverage, there's nothing they can offer the employee other than taking money and offer nothing in return.

Smith: You raised an important point about how wages are set. For the most part, money for direct support workers comes through the state, which negotiates with Medicaid for reimbursement. The wages for workers are largely set there. It's not like a business where one can raise prices on goods and services to pay their workers more. In this sense, there’s a clear limit to what unions can expect to get from provider agencies in terms of higher wages. However, can’t unions advocate with a larger megaphone to affect the decisions of state legislatures?

Barry Simon: Yes, this is about Medicaid reimbursement. Until our policymakers believe in the value of community living and that direct support workers are deserving of fair wages, good benefits, and the ability to retire, and set Medicaid rates that will support that, we're in this constant dilemma of fighting amongst ourselves. We're like a circular firing squad and it doesn't end well for anybody. Policymakers love to talk about how much they want equity, inclusion, and livable wages. And yet time and time again, they vote to hold our rates as low as possible. We need to figure out how to hold policymakers accountable for a system that values our workforce and allows for access to services. And you’re not going to get access to services unless you have a qualified, reliable workforce that's there to provide those services.

In Connecticut, I have about a thousand employees that are in the union, including PCAs who have the right to strike. In my 32 years in this field, I've endured three strikes. And during those strikes, our largest gains were made.

Smith: So, who can most effectively hold legislators accountable? The vast majority of disability service providers are people with a strong moral compass. They are experienced in asking for change from elected officials, but not always so effective in getting it. Providers often feature DSPs and people receiving supports in their efforts, but DSPs are not front and center. Are unions, with a larger megaphone, the more likely to influence legislators and get better DSP wages? Or is there some other way for workers and allies to organize effectively?

Mulvey: In California, we've been successful in creating a coalition between unions and the provider community. We have a group called the Lanterman Coalition, which includes all the statewide actors in terms of service delivery. We meet early in the budget year and decide on our priorities. We go to the legislature with a political strategy and one set of asks. And that's been much, much more successful than what we did in the past, which was each organization advocating for itself, saying “You need to spend the money on us, not them.” And of course, the legislature agreed with all of the not them part and none of the us part, so it didn't help us. Working together as a group has been very successful.

Spika: Here in Minnesota, it wasn’t until we had union representation that workers came together and said, “We deserve better.” My boss isn't out talking to legislators. It is home care workers and people with disabilities who are having those conversations. And that has been really effective for us.

Nikki Villavicencio: Are we centering the political power around the folks most affected, or the ones that are holding all the power and money? At every legislative session in the last 10 years,we've had PCAs and people receiving supports advocating directly with legislators, and also working in their campaigns. And you know what? Those legislators do not forget when a support worker works on their campaign because they hustle harder than any of the other campaign workers.

Simon: We went 10 years of getting zero increases until the union struck. And when the union strikes, politicians take notice. Politicians don't pay attention to our industry and our workforce other than by crisis. That seems to be what gets the most attention.

Taylor: For me, the union did zero, except for keeping bad people in place. A union can't go to the state and say, “Hey, I know we can't strike, I know we can't have a work slowdown, I know we can't even picket, however, could you give us more?” The state says no.

McAlvanah: We're looking at a national rate of only 10% for unionized workers, with New York and California probably two of the largest union states. Maybe if there was just one union representing all the private not-for-profits in New York we would have seen progress, but we have between 6-12 different unions representing different private not-for-profits and none of them have affected change. It wasn’t until parents and self-advocates worked with the private not-for-profit agencies that we began to see increases over the last couple of years. That, and having a governor with personal connections to people with developmental disabilities, has made the difference.

We've also been fighting for a Standard Occupational Classification to recognize the title of direct support professional. [A SOC for DSPs would enable the U.S. Bureau of Labor Statistics to more accurately capture employment and wage data specific to the profession and support more informed policy decisions regarding the Medicaid Home and Community Based Services program, including aiding in the development of more precise payment rates.]

Simon: We’re all funded through a Medicaid program, and each state decides how to spend those dollars. We need our elected officials to value our employees and the people we serve and properly fund Medicaid rates in order for us to pay livable wages, good benefits, and give our employees the ability to retire. Until then, it's just going to be a constant struggle.

McAlvanah: Legislators don’t pay attention until it becomes personal. When BJ or a parent goes to their office, or when they have children or grandchildren disabilities, they begin to listen. And this goes across political aisles. It doesn’t matter if you’re Republican or Democrat. When you have personal experience with disability you understand what it's like.

Spika: You were saying that the changes that have happened are coming from advocates, parents, people with disabilities. Have you all ever tried to bring those folks together with a union to do that advocacy?

McAlvanah: We've welcomed the unions representing some of the provider agencies to participate in our rallies, but it's splintered. It's not just one. There are several unions and not any one of them is going to say, “We should just band together and have one union represent everybody.” They're not going to do that.

Smith: BJ, when you tell your own story about struggling to find and keep DSPs, people listen. You understand the power of personal testimony and you’ve helped others to speak up and advocate. But is it enough to tell your story as one who relies of services? Or do DSPs need to come together and tell their own stories, rather than having somebody talking for them?

Stasio: We all need to get together and tell our individual stories, and it can't be the same people. It can't always be me or the person you saw at the last budget session. I want New York to continue to rise up and to continue tell the story and everybody around the country to tell their story. Because things will change if we tell the stories that matter to us.

BJ Stasio and Deborah Dolinski, a direct support professional.

Smith: What is the best way for DSPs to organize and make their voices heard? We have state and national associations representing the interests of service providers. We have hundreds of individual self-advocacy groups by and for people with intellectual and developmental disabilities, including the national organization Self-Advocates Becoming Empowered. We have the National Alliance for Direct Support Professionals that advances DSP skills and professionalism. All are concerned about the workforce, but who can most effectively bring workers together so they can speak for themselves?

Taylor: I would say if each provider, each not-for-profit, selected two or three DSPs and put them on a committee within their own organization, and then all the organizations get together and send those DSPs to their state’s capitol. So now we have the voices of many DSPs standing there instead of one lobbyist from a union, where we could tell our stories and share our frustrations.

I love the people I work with. I couldn't see myself doing anything else no matter what the wage was. Am I working poor? Absolutely. Could I change it? Absolutely. But who's going to be here for the people I support if I leave? To me, that's a selfish, a selfish move. To knowingly walk away from these people that need daily care, just for a dollar, isn't who I am.

Simon: You shouldn't have to take a vow of poverty to be able to provide care.

This is about coalition building and holding our politicians accountable. They should recognize the value we bring, both in providing needed services and as a business. I mean, if another business in Connecticut added 50 cents for every dollar invested, the governor would show up with the UConn Marching Band! We provide an economic multiplier, but for some reason, they don't see us as a normal business, and they don't value our employees or the people we support.

Villavicencio: And they're not going to care. Let's realize that. It's not about singing Kumbaya and waiting for them to care. It's about getting in their faces and saying, “Unless you want us to die, you're going to have to pay livable wages.” We have to make elected officials do what they are obligated to do. They have a moral obligation as leaders of our communities to do what's right for the most marginalized people. And we have to force them to do that by any means necessary, in my opinion.

Taylor: I agree, but I don't think a union representing me is going to be more effective than a coalition of DSPs.

Villavicencio: But that's what a union is. It's a bargaining team made up of the workers, and in our case in Minnesota, of people receiving supports as well.

Mulvey: In addition to low wages, workers I’ve spoken to are even more upset about perceived favoritism and unfair discipline in the workplace. The presence of a union, trained stewards, and a contract that sets out agreements on hiring, promotion, and discipline can substantially address these problems while giving the workers a voice and investment in their workplace.

Smith: Can DSPs do this alone, though? We agree that the voices of DSPs need to be heard, whether it's through a union, a coalition with a provider agency, or some other framework. But given that most people don't even know what a DSP is, do we need to be a bigger tent? Should we address the needs of all support workers first, so people understand our context, before drilling down to the unique skills of a CNA, PCA or DSP?

Simon: Well, that's the value having a standard occupational classification. If you have the right people in a category and connect this to Medicaid rates, we could see wages commensurate with skills and responsibilities. But again, it's that coalition that you're talking about. You have to build it in ways that allow politicians to believe there are votes behind whatever that coalition is.

Stasio: I want our elected officials to remember that the numbers you see in the budget, there are human beings attached to those numbers. And at some point, everybody will need help, because everybody is temporarily able-bodied. So just remember that.