September 2023: Climbing the Same Mountain Together

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish. We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

The time is long overdue to take action on the DSP crisis!

This month’s guest blogger is Cheryl Powell. 

DSP. What does DSP mean? DSP stands for direct support professional. However, the word direct support professional can also be used interchangeably with titles such as direct care worker, attendant, and companion. With so many names, is it any wonder that people are so confused about what a direct support professional is? Let alone what they do? 

As a DSP myself, I personally do many tasks that fit into many different job descriptions. For instance, sometimes I act as a nurse by giving meds, as a psychologist by giving a client emotional support and coping skills, and as a Certified Nursing Assistant (CNA) by giving my client personal care as needed. 

By doing all these things is it any wonder that I feel disrespected when I’m told I’m “just” a DSP? To be honest, I do more on any given day than any of these professions mentioned above combined. I am supposed to be the client’s mom, dad, nurse, psychiatrist, caretaker, med administrator, friend, and support person when they need it. And for all this work myself and many of my fellow co-workers are only offered a measly, and downright insulting $10 to $16 an hour. 

Now if I sound frustrated it’s because I am. I along with my fellow co-workers in this field deserve no less than $25 an hour and that’s putting it nicely. The mere fact that we are giving an insulting amount of money to live on shows just how much respect is given to people with disabilities. 

You see if the people in power (and when I say “people in power” I mean the state of North Carolina general assembly, the providers of North Carolina, the LME-MCOs of North Carolina and Center for Medicare & Medicaid or CMS) would do their jobs and pay us correctly, they would show that they value people with disabilities as people and not just a drain on their precious economic system. 

By working as a direct support professional, and I want to highlight the word “professional” here, I deserve to be paid appropriately and so do all my other co-workers in the state of North Carolina. We are a profession; we are not people who simply got a job out of high school or college. We are not summer workers, we are not winter workers, we are 365 days-a-year 24/7 days-a-week workers, and we deserve to be paid as such. 

I and my fellow DSPs across the state of North Carolina are fed up and sick of being treated as if we are just another worker, especially when right now we could go to McDonald’s and make more money flipping burgers then we make working with a person with a disability who needs the care to survive in their everyday lives. 

Now I ask you why doesn’t North Carolina care about people with disabilities? What is their problem? I’ll tell you what I believe their problem is – they do not see people with disabilities as a value to our society and that is their issue to sleep with at night. It’s not ours as DSPs and it’s certainly not the people with disabilities’ issue to deal with as best as they can manage it. It’s time for those in power in the state of North Carolina to wake up and actually do their well-paid, powerful jobs. People with disabilities, no matter what level of disability they possess, have value. These are people you’re talking about for heaven’s sake! People who give love and get love, people who deserve the right to work, who deserve the right to get married without being penalized for it thanks to federal Medicaid eligibility laws. These are people who contribute to society every single day, the same way that people who do other jobs do. 

We have every right to live our lives the way we see fit. Not the way mom and dad see fit (if we maintain our own guardianship rights), not the way the state sees fit, not the way that our society sees fit! No, we are individuals who have disabilities, and we have the right to make decisions for our own lives! 

It is beyond time that the state of North Carolina and all the people in power that encompasses the system for people with disabilities realize that. You see, now is the time for people with disabilities to take the power back for ourselves and you know the way we do that, folks? We do that by voting! I’ll tell you a little secret that people in North Carolina don’t seem to understand…people with disabilities have the right to vote and we will use it. 

Let me tell you something else. The current direct support workforce crisis could have been avoided years and years ago! The reason it hasn’t been stopped is because of the love of the almighty dollar. North Carolina has known that this crisis was coming for at least 30 years now and chose not to address it. Then along comes COVID-19. Now there’s no excuse for NC to not fix the problem they allowed to linger for some 30 years. 

So now I guess the question would be, “Cheryl, what do we do to change it?” Well, I’ve been told to talk to legislators, to talk to leaders, to talk to everybody I can, and I have multiple times. Now guess just how far I have gotten. Well, you tell me. Does your loved one with a disability have a care worker all week when they need it? I doubt it unless that person is a relative such as a person’s mom or dad or brother or sister but it’s not somebody that gets paid to be there most of the time, is it? So, you tell me. What do we do to fix this? Quite frankly, I’ve tried for over eight years to get through to those in power. 

One thing I forgot to mention is I am an individual with a disability. I personally have a physical disability known as cerebral palsy. I use a wheelchair every day and every night and I work as a DSP. That’s right I (the girl in the wheelchair) have something called a job. However, it is not because I got any help from the State by any means. No, I went and got that job on my own. Not thanks to any program given out by the State. Now, my job comes with its own set of challenges. I get passed over for promotion after promotion after promotion. Why is that you ask? I can’t drive. I had someone literally tell me this week, “Cheryl, you’re qualified for this high-paying position on paper but because you can’t drive, we can’t hire you.” So, despite my best efforts, even I, with my college education and my lived experience meaning that I actually have a disability, not just sympathy for people who do. 

I continue to get turned down for position after position. I routinely get turned down for positions that I would be best at because I have a disability. Now you can disguise discrimination as, “Oh, it’s because you can’t drive.” I’m too smart and I can see right through that. Let me tell you, I am well over-qualified than many Qualified Professionals working in the field and making a salary today. 

At least I actually know what it’s like to have a disability. Honestly the whole situation disgusts me. The bottom line is that the Direct Professional Workforce crisis can be solved. People with disabilities and their allies will be the people to solve it. We are the ones who actually care about the people who need support. Remember in the end there’s no one better to bet on than yourself.

About the author: Cheryl Powell was born and raised in Wilmington, NC, and graduated from UNC-Wilmington with a degree in social work in 2003. She worked as a Direct Support Professional for seven years for Easter Seals UCP. In 2015, she became a member of the North Carolina Council on Developmental Disabilities (NCCDD), and recently completed her eight-year term. She also served as chairperson of the NC Empowerment Network, a statewide self-advocacy group. She is a member of the following organizations: NACDD, DSP Workgroup, Work Together NC, LAND/Registry Advisory Council, Technical Advisory Group (TAG). Cheryl states that she wants to do everything that she can to support and advocate for others with disabilities. She has been married to her best friend Billy since 2012 and has a chihuahua named Annabelle who she adores.