Frontline Initiative: Making Direct Support a Career

Finding Your Voice and Sharing Your Story

Author(s)

Amy Hewitt, PhD is the director of the Institute on Community Integration at the University of Minnesota in Minneapolis

Sarah Preston, Julie Witterts, Brandon Duncan, Mike Noren, Deyanelin Galvez, LaRissa Epp, Ken Reedy, Elizabeth Scholze, and Harold Boyd are some of the people who have shared their stories on Stories from DSPs.

How long have you been a direct support professional (DSP)? If you have been in this position for a few years, I know you are in it for reasons other than compensation. You likely love your work and have developed close relationships with the people you support. You think it is important for people with disabilities to be included in their communities, and this is likely a passionate social justice issue for you. You live a purpose-driven life and being a DSP is more than just a job for you. You are in this work for all the right reasons and you deserve more.

When I think about the COVID-19 pandemic and the role of DSPs in supporting people with disabilities to survive, I am grateful. I am also angry. You are on the frontline of this pandemic. You are essential workers who, despite being required to shelter-at-home, showed up to work daily to provide critical support to people with disabilities, often working double and triple shifts. Many of you are working in locations that are short staffed and often without personal protective equipment like masks and gloves. You are the lifeline for people with disabilities. Yet when I heard about heroes and essential workers on the news, I almost never see your profession identified. You remained largely invisible. How can a workforce that is 1.4 million strong be left out?

You are left out because your voice is rarely heard. Your employers and disability advocacy organizations share your stories as they lobby policymakers for solutions to high turnover and vacancy rates. They usually advocate for the direct support workforce while simultaneously advocating for increasing funding for more disability services and making sure that their rates are high enough to pay for the cost of doing business. Each and every year they ask for more money and want to raise your wages. The problem is that on a good year they get only a 2-3% increase. That is less than the annual increase in inflation. Thus, the value of your take-home pay today is less than it was 10 years ago.

Amy Hewitt

If you look at just about every profession in this country, it took workers advocating for themselves to create needed motivation and change in their profession. As a DSP, you provide critical support that allows people with disabilities and their family members to work and be valued members of their communities. You assist people with daily living activities and personal care. You provide health-related interventions, administer medications, and coordinate social services. You provide transportation, assist in building job and social skills, and so much more. To do your job well, you must demonstrate these skills through a critically-important ethical lens. Yet, everyone in the field—individuals with disabilities, family members, advocates, and employers—agree that you are underpaid… and have been for decades.

The average wage for a DSP is about $12 an hour. Vacancy rates are around 15% and turnover is 51%, rates that have barely changed in two decades. These wages and vacancy and turnover rates would be completely unacceptable in nearly every other industry and should not be tolerated in disability services. So why is this decades-long workforce crisis tolerated? I’ve come to believe that it is because our elected officials and policymakers are not hearing from you. Your voice is critically needed. I am convinced that without it, we will not lift DSPs out of poverty and this profession will remain largely invisible.

Why is this decades-long workforce crisis tolerated?  I’ve come to believe that it is because our elected officials and policymakers are not hearing from you. Your voice is critically needed. I am convinced that without it, we will not lift DSPs out of poverty and this profession will remain largely invisible.

Who needs to hear my story?

It is important to share your story with your elected officials and community leaders.

You have elected officials at the local, state, and federal levels. Remember, their job is to work for you. Here is a website that will get you the contact information for each of your elected officials—you just need to know your zip code.

It is also important to share your story with leaders in your community. This could be local faith and business leaders, members of civic and labor organizations, and members of the media (e.g. newspapers, radio stations, television stations). Your community leaders need to learn about your profession directly from you so they better understand your work and its importance.

How can I best communicate with elected officials and community leaders?

There are a number of ways to communicate with your elected officials and community leaders. You can make an appointment to visit them in their offices, which provides the opportunity to meet their key schedulers and staff. This is an important component of relationship building. Beyond visits, you can always write a letter or send an email. If you choose the email option, you should include the words constituent + zip code + the topic of your message in the subject line. They all have phones and calling them is an option, though often you will be relaying your story through a staff member. Lastly, if you use any social media, “friend” or follow all of your elected officials on their pages. Feel free to tag them on important messages.

 

A five-step process to develop your DSP story

Step 1: Share some information about yourself

  • Who are you? How long have you been a DSP? Where do you work? If you no longer work as DSP, why did you stop?
  • Where do you and your family live, learn, work, and play? State that you are a constituent (a voter in their region).
  • How many people with disabilities have you provided supports to in your career as a DSP?

Step 2: Describe the services and supports you provide as a DSP (and how they are funded, if you know).

  • What kind of services and supports do you provide to people with disabilities?
  • What are some of the daily responsibilities you have as a DSP? Be sure to include some of the highly-skilled job duties you have (e.g. passing medications, counseling, de-escalating challenging behavior, medical treatments and interventions, physical therapy, occupational therapy and speech therapy, discussing health and medical issues with physicians and specialists, challenging community organizations to change toward inclusion).
  • Share a powerful outcome you helped someone with a disability achieve (e.g., get a job, get off some medication, move out of an institution or into a more independent or smaller home or apartment, learn how to do something new, communicate a need).
  • What is one thing you like about being a DSP?

Step 3: Describe the challenges you experience as DSP and the effect these challenges have on you and your family, financially, medically, and emotionally. Focus on what is to you.

  • What is your hourly wage? How do you get by on this wage?
  • Do you have health insurance? If so, is it from your employer or another source? What is the monthly cost to you?
  • Do you receive any government benefits, such as childcare, heating, housing, or food assistance?
  • How often do you work overtime? If so, how many hours of overtime do you work?
  • Do you work a second or third job? As a DSP or other?
  • What is the hardest thing about being a DSP?
  • How does working as a DSP affect your family?

Step 4: Describe what action is needed to improve your work life as a DSP.

  • What kinds of resources, services, training, and/or funding will help support DSPs?
  • What needs to be done to improve the profession of direct support? 
  • What action do you want your elected official to take? Is there a deadline?
  • How do you want them to follow up with you to let you know what they did?

Step 5: Be sure that you give and get information for follow up.

  • Provide your name, address, email, photo, and any other contact information you want to share.
  • Seek information about the best way to follow up with the elected official and ask for their preference.
  • Make sure you follow up with a “thank you,” any information they asked for, or anything you said you would share with them.

See an example of a DSP’s story in the next article by Tammy Delfun. More videos of stories from DSPs are available at https://ici.umn.edu/product/invaluable/stories-from-dsps .