Frontline Initiative: Advocacy and Voting

Quote attributed to Mahatma Gandhi.

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 likely see this as a social justice issue. You live a purpose-driven life and see direct support work as more than just a job. You are in this work for all the right reasons, and you deserve more.

Amy Hewitt

When I think about the COVID-19 pandemic and the role DSPs played in supporting people with disabilities to survive, I am grateful. I also remain angry that your work was underrecognized. You were clearly on the frontline of the pandemic. You are essential workers who showed up to work daily to provide critical support to people with disabilities, often working double or triple shifts and sometimes living with the people you supported for months, 24 hours a day.

Many of you were – and are – a lifeline for people with disabilities. Yet when I heard about “heroes” and “essential workers” on the news during the height of the pandemic, direct support professionals were largely invisible. How can a workforce that is 1.4 million strong be left out? When our research center studied popular media articles that came out during the pandemic that mentioned both disability and direct support workers, we found inconsistent language used to describe the workforce. Many who report the news clearly do not fully understand or appreciate the work you do.

You are too often left out of the media and conversations because your voice is rarely sought and 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 in a good year they typically get a 2–3% increase, which is less than the annual rate of inflation which means that your real take-home pay today is less than it was 10 years ago. Following the pandemic in some states, there has been greater attention on the need to increase rates so that your wages can be increased. Many states used the American Recovery Plan Act (ARPA) temporary funds to offer bonuses to direct support professionals and others in caregiving professions.

If you look at just about every profession in this country, especially professions that employ primarily females, it took workers advocating for themselves to create needed 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. Everyone in the field—individuals with disabilities, family members, advocates, and employers—agree that you are underpaid and have been for decades.

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. They do not know you. They are unaware of your important work and contributions to your communities.

The average wage for a DSP is $15.98 an hour (NCI-IDD, 2023). Vacancy rates are around 20% and turnover is 41% each year, rates that have barely changed in two decades. These wages and vacancy and turnover rates would be completely unacceptable in nearly every other industry. They 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. They do not know you. They are unaware of your important work and contributions to your communities. 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 word 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 or voicemail. 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. Throughout my career, whenever I have met with elected officials, it is clear that staff are assigned to review and summarize constituent calls, emails, and in-person messages for the elected officials they work for.

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 your truth and experience.

• 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 another job?
• 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.

To see an example of these five steps in action, see Tammy Delfun's story, "Decisions Are Made By Those Who Show Up."

Six tips for telling your story to elected officials

1. Keep it brief, short, and focused. Focus on the important events that would move the legislators and leave a memorable mark on them. Stick to the highlights. Aim for a minute or two of their time in person, on video, or while reading your letter/e-mail. It’s like a TV show highlight—just give them the parts that grab their attention and leave them wanting to know more. When they ask questions, you’ve caught their attention.
2. Avoid jargon and acronyms. Your elected officials are smart and they know a lot. But we tend to have our own alphabet soup and language in lifelong long-term services and supports for people with disabilities. Do not use acronyms or jargon when telling your story.
3. Maintain confidentiality. If your story involves a person you support, use only a first name or a pseudonym (a made-up name that protects the person’s confidentiality).
4. Emotion should move, but not overwhelm. Stories that evoke emotion are powerful, but if your story makes you cry, it may overwhelm others and they could stop listening. Try to find a balance between inspiration and realism.
5. Motivate to action with hope and commitment. Frame your story in a positive way. Mention and emphasize your commitment and that there is hope. Draw a realistic picture of what can be done to reduce turnover and vacancies in direct support positions, increase pipelines of new workers, and raise the recognition, respect, and understanding of the profession of direct support.
6. Make an “ask.” Legislators expect requests from constituents. Let them know what would help you and other direct support professionals. Put them on the hook by asking for their support. If they say “yes,” you have a supporter. If they say “no,” or won’t commit, you know you’ll need to follow up and build rapport and gradually gain their support.

Resource

National Core Indicators Intellectual and Developmental Disabilities. (2023). National Core Indicators Intellectual and Developmental Disabilities State of the Workforce in 2022 Survey Report. https://idd.nationalcoreindicators.org/survey-reports-insights/

This article was updated and reprinted with author approval from Hewitt, A. (2020). Finding Your Voice and Sharing Your Story. Frontline Initiative, 16(2). https://publications.ici.umn.edu/frontline-initiative/16-2/finding-your-voice-and-sharing-your-story

New Episode 6 — No One is Better at Telling Your Story Than You

Guest Amy Hewitt, PhD and director of the Institute on Community Integration at the University of Minnesota, talks about the importance of advocating for yourself and your profession. No one is better at telling your story than you are, and elected officials are people who are there to work for you. You telling your story helps them get to know you so that when it comes to voting on issues that affect you, they will think of you.

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