Frontline Initiative: Advocacy and Voting
Interview with Representative Tina Spears on the Direct Support Workforce
Tell us about yourself and what led you to your current roles as Executive Director of CPNRI and a member of the Rhode Island House of Representatives.
Rep. Spears: First and foremost, I was a parent. My first-born son had developmental disabilities, and that is really what led me to this work. While I was raising my son, I got a lot of support from my local advocacy community. I learned about the services and support that could help my son and our family. I am currently the Executive Director of the Community Provider Network of Rhode Island . It is a provider member organization that supports people with intellectual and developmental disabilities. We make sure that the providers have the resources to serve as many people in the community as possible with good quality services. To do that, we have to focus on policies that support that mission, which includes advocacy on behalf of the people we support.
All of this experience and understanding of how government and policy works, led me to run for elected office. I am honored to be elected and will continue to be a strong advocate for people with disabilities in Rhode Island.
Tina Spears
In these roles, you are in a unique position to understand the instability of the direct support workforce and issues that DSPs deal with, in their daily lives. What do you believe are the top advocacy issues with respect to the DSP workforce?
Rep. Spears: Wages are always paramount. At CPNRI, we worked really hard to get that foundation established in Rhode Island. We did a lot of advocacy work around the consent decree and rate reforms for DSPs to have livable compensation. We know the wages paid to DSPs aren't great. Wages demonstrate how you value someone. DSPs are not earning middle-class wages. People don't think of this as a job that is going to make them comfortable in their family life, so they move on to different fields. They may like working in the human service field, but they'll move into careers like occupational therapy or physical therapy, where they get paid more and they're valued in different ways. The work we do in direct support doesn’t require a bachelor’s or an associate degree. That creates an environment where direct support is like a stepping stone, as opposed to a long-term career path, for a lot of DSPs.
To get serious about longevity of DSPs staying in this field, we have to think about career paths. As a state or as a nation, we need to think about how we can retain somebody who comes into direct support to be a professional. Not having clear career paths is an impediment to lowering our turnover rates. A career path will help keep committed staff engaged in our work.
Another problem is that people discount or don't understand the value of the work that DSPs provide to the individuals they support and their families. Many people don’t know what a DSP is or what they do, that they improve, and even save, people’s lives. They don’t understand that direct support is hard work. It’s not easy to care for somebody's intimate or behavioral health needs day in and day out. When you think about a teacher, you know that they went to school and what they do. Like teachers, DSPs serve their community, but some people still do not know what DSPs do. We have a lot of challenges to overcome for DSPs to be compensated in the way they should be, and to be valued by society as a profession.
The DSP workforce is in a decades-long crisis. How do we as a society continue to tolerate it?
Rep. Spears: Yes, this is true because we (elected officials) rarely hear from the DSPs themselves. We hear from nursing home workers. We hear from casino workers and other workers in the State of Rhode Island. We hear a lot of workers saying they don't have enough. It's a broader issue beyond the DSPs. The working class has been forgotten.
How do you get your issue to rise to the level that everyone understands it? You have to build awareness of who you are, who you represent, and what issues are important to you. You need someone to step up, to bring DSPs and your advocates together, and organize those communications strategies to have the impact you want to have.
While you need the community to rise up and educate policy makers about your issues, you also need someone on the inside. You need strong allies and strong advocates in the government. You could be loud and advocate constantly, but if you do not have somebody to carry that message internally, that's where the message stops. When we’ve made progress in Rhode Island, it was because there was somebody within the state government in an elected or appointed position who helped move the needle. Advocacy on the inside and the outside is necessary to move things forward.
Often DSPs are good at advocating with or for the people we support, but not themselves. How would you encourage DSPs to speak up and share their story with their elected officials?
Rep. Spears: I encourage DSPs to speak up. Also, make sure they've got their message planned before you talk to your elected official. Prior to meeting with an elected official, provide them with information about which bill or policy you are asking them to consider so they have a better understanding of what you are asking for and why.
To advocate for the person you support, you have to advocate for yourself and the profession to have the support you need.
Think of advocating for yourself as a way of advocating for the individual(s) you support. At the beginning of every airplane flight, you hear the message to put your oxygen mask on before you put it on others. Think of advocating in the same way. To advocate for the person you support, you have to advocate for yourself and the profession to have the support you need. Set aside that fear of putting yourself out there. Share the challenges that you face in your day-to-day life. That takes time to think about your message. For each DSP, that will depend on your willingness to share your personal circumstances but remember to think of the bigger picture: how you're helping a cause that is your profession to support people with disabilities and their families.
Just like the Civil Rights Movement collectively advocating for the whole made change. That is what I would say to DSPs who are reluctant to advocate for themselves. Think about your work as moving the needle on inclusion for people with disabilities.
What advice do you have for DSPs about organizing a grassroots movement?
Rep. Spears: It all starts with a leader. It usually just takes one person to organize others and facilitate a group. You really have to have somebody who wants to lead the effort into action. Ultimately, at the end of the day, somebody steps up and says, “let's go, let's do this.” I think that's fundamentally what it takes to get activism moving.
Beyond one person organizing other DSPs, as community organizations and providers, we need to support and promote activism. We need to elevate DSPs and give opportunities to convene and figure out what they need to advocate for and how they can advocate together. At the end of the day, just like any issue of progress, it takes a leader to drive the agenda.
Is there anything you would like to say to Frontline Initiative readers about voting?
Rep. Spears: I recognize there's such a disenfranchisement [the action of taking away the right to vote from a person or group]. People may feel left behind, like nothing will change, or like politics is just noise, to mention a few. But our government is driven by voter involvement. The more active you are, the more impact you can have on things that affect your life. If you don't vote, it will stay the same. I encourage everybody to educate themselves on the issues, the candidates, and to vote. It’s incredibly important that everybody stays engaged. We know that if the working class and people with disabilities are not engaged, they will be forgotten. It is my hope and wish that everybody gets out to vote.