Frontline Initiative: Advocacy and Voting
Now the Call for Social Justice Is for You and the People You Support
Two people standing close together.
The man on the left name is Jay. He is smiling and looking directly at the camera. He has short brown hair and a short goatee beard. He is wearing a green shirt with part of a word ending in “od’s” followed by Coffee House, VIP printed on it. He is wearing a red name tag with the name Jay on it in white letters.
The woman on the right is Megan Russel. She is smiling and looking directly at the camera. She has short dark hair and is wearing a gold V-neck sweater. She has two red name tags with the names Megan and Beth on them with white lettering. She is wearing hoop earrings.
Jay and author Megan Russell
This job takes heart and soul. Some people can do a clock-in-and-out-style job, but then the person supported suffers. They know. I want to give more and do what it takes to help the person I support live a good life. This includes banding together with other professionals to talk about issues and problems that need to be improved.
Last May, while speaking with policymakers at the NADSP Advocacy Symposium, I shared some of the work I do with Jay, a person I’ve supported for a decade. For the last seven years, I’ve worked exclusively for Jay under the Supports for Community Living waiver. In the waiver system, you get a higher hourly wage than if you work for an organization, but you don’t get benefits like insurance, retirement, vacation, or sick days. We’re working on getting a standard occupational classification code that could help improve wages and benefits, but most people don’t really know what a direct support professional is. Legislators need to know how important this work is, but not really respected. This job is so extensive and deserving of the respect, pay raises, and benefits that employees usually receive in other fields of employment. Families love the role we play because they know they have hired a person they can trust to support their loved one, but they can’t offer benefits. When I talked to legislators about our work, they listened. They began to understand the many hats we wear.
I am not just getting someone up and out of bed for the day. A lot of my job is to get Jay out of the house and involved in his community. I am his job coach and supported employment specialist. He volunteers at a pre-school and is pursuing other jobs. I talk to human resources representatives where he works or volunteers. Jay is a visual learner, so I set up visual job task lists because this helps him complete his job more independently. I set up his training and support him by in training on his job. He attends community education classes so he can learn how to talk with people. He is taking a college class too, so I support him by taking notes and talking with his advisor. I am also the team manager, so I am responsible for training new staff and doing the billing for everyone. I set up social opportunities for him and he is very active in the community. He has grown by leaps and bounds because of all the social situations that I challenge him with, including attending advocacy groups. He has changed a lot in the last 10 years. I have a Bachelor of Science degree in Early Childhood Education and Training, and a Master’s degree in Arts (Intercultural Studies). My education helps me individualize the support I provide for his specific needs. I learn from him too.
Another thing I told the elected officials during Advocacy Symposium was my struggle to pay off medical debt that piled up when I had some health problems a couple of years ago. I pay for my own insurance, but it wasn’t great. I ended up having to work more hours and go on payment plans with doctors. I don’t get paid vacation or sick time, so I have to factor that in because, of course, I need rest. Recently I have been talking with other DSPs about the lack of benefits, and they have been a good support system for me. This work can be very isolating. It can be hard to build community with co-workers since many are working second and third jobs.
If you feel like others don’t respect you, understand that it is often because they don’t know what you do. If you feel intimidated to talk to your elected officials, think of it as advocating for the people you support.
Now, we need to speak up to others about what is wrong. That might mean talking to the family, case manager, your legislator, or attending the NADSP Advocacy Symposium in 2024. I understand that speaking up to legislators is intimidating but recognize that your job is very valuable. If you feel like others don’t respect you, understand that it is often because they don’t know what you do. If you feel intimidated to talk to your elected officials, think of it as advocating for the people you support. Tell your story and share how the lack of benefits and poor pay affect your life. Talk about the high turnover you see all around you, and how that affects the person you support. Hearing your personal experience helps others learn about the real-life struggles of this field, as well as your love and care for the people you support. The status quo has had its time. Now the call for social justice is for you and the people you support.
New Episode 5 — Advocating for Yourself with Megan Russell
Hear from career direct support professional Megan Russell about how the NADSP Advocacy Symposium helped her prepare for and set up a virtual appointment to tell her unique experience to her elected offices regarding how the lack of a living wage, health insurance, and no benefits, like sick and vacation time, affects her life.