Frontline Initiative: Advocacy and Voting
Decisions Are Made by Those Who Show Up
Photo credit: Disabled and Here.
I’ve been a direct support professional (DSP) for 40 years. I live in Minnesota Senate District 43, in a suburb of Minneapolis. I started my career working with children who had complex medical disabilities as well as developmental disabilities. Most didn’t speak and those who did only spoke a few words. All relied on wheelchairs for mobility and most needed physical assistance with every aspect of their lives. Later, I worked with adults. Some communicate their needs by using action that are harmful to others. Many had mental health conditions in addition to developmental disabilities. Over the years, I estimate I have worked with 35 people very closely and another 100 people though working in various homes and supporting people on their vacations. I became a guardian for one of the kids I first worked with. She wasn’t expected to live past her teens. Her love of life and general feistiness served her well and she died two days short of her 48th birthday.
The diverse needs of the individuals I have worked with have meant that I have needed considerable training in wide-ranging topics. In my first job I was trained on providing passive range of motion, seizure care, therapeutic positioning, assistive technology for communication, and supporting people's physical support needs. I also learned to replace a G-tube, administer medications, and use postural drainage and other techniques to clear lungs. Cardiopulmonary resuscitation (CPR) and First Aid are universally required. Before starting at my current job, we had extensive training and ongoing support on preventing and de-escalating harmful actions. There was a lot of additional training on supporting people with various mental health conditions. In my role as a DSP, I have also learned about the cycle of sexual offense to help keep people from re-offending. Changing medical needs also necessitate further training. Using C-Pap machines, catheterization, sterile post-op wound care, dementia care, and end-of-life pain management are only some of those areas. Of course, during the COVID-19 pandemic, I took precautions to keep myself and the people I support healthy. This sometimes meant not being able to work my regular hours, not being able to accept overtime, or not working my second job if I had been exposed to COVID-19. That was a rough time.
I’ve gone for years at time without a raise. And the raises we do get are usually one or two percent. Our health care costs go up far more than that every year. I need to work 10–20 hours of overtime per pay period just to pay my bills.
One of the biggest challenges at work in recent years has been budget cuts. Seven percent may not seem like much to a legislator, but during previous budget cuts, we had already eliminated most of the extras. When they tried to “catch us up” from previous cuts, inflation exceeded the amount paid to us. Trying to cut 7% out of an already bare-bones food budget is impossible, especially when trying to meet federal guidelines of what people need to eat to be healthy. The providers I work for pay for many of the topical medications that are no longer covered by Medicare or insurance. The individuals we support don’t make much money. The people we support would have to do without topical medications if providers could not purchase them.
I’ve gone for years at a time without a raise. And the raises we do get are usually one or two percent. Our health care costs go up far more than that every year. I need to work 10–20 hours of overtime per pay period just to pay my bills. Due to having to care for my mom, I could not work overtime for eight years. I am still climbing my way out of $40,000 of debt with no end in sight. Almost all DSPs who I work with have a second job. One co-worker works seven days a week.
One of the most critical things I would like to see are wage increases that are tied to the rate of inflation. In the last legislative session, with support from the Minnesota Senate, House, and governor's office, all direct support professionals where I work received a raise of $1.50 per hour. As a result, we have had more applicants to fill open positions. Of course, many more are still open but now the staff situation doesn’t look as bleak. More is needed by way of sustainable wages and benefits to keep those of us who are committed to this work.
Moreover, as the people who receive support age, we need much more training in care for people with dementia. A lot of people with Down syndrome are only prescribed the expensive Alzheimer’s drugs because of much advocacy by their parents or guardians. When we know there are medications that can help a person with Alzheimer's, why should they have to fight for current standard care? People with intellectual disabilities need quality care from DSPs who will hold themselves and others accountable to a high standard.
Tips from Tammy
Over the years, I have gotten involved in different ways. On two occasions, my employer sent me to Washington D.C. to advocate for DSPs. I appreciate that they value me as a DSP and have supported my involvement on a national level. On one of those visits to the U.S. Capitol with a group from Minnesota, we went to U.S. Representative Keith Ellison’s office. He was in a committee meeting, so we couldn’t meet with him. But later that day, I happened to see one of his staff whom I had met at a Senate district convention, and he recognized me too. He took the time to read a draft of the bill we wanted Representative Ellison to support. He said he felt certain that Representative Ellison would support it and he would make sure that Representative Ellison would read it. In fact, Representative Ellison not only supported it—he co-authored the bill. On another trip to Washington, D.C., the Minnesota delegates went to U.S. Senator Amy Klobuchar’s office with a bill we asked her to support. She also supported the bill.
If your legislators are of your political persuasion, consider volunteering to help with their campaigns. A couple of hours putting together lawn signs or stuffing envelopes gives you much more time with them so that you can educate them on our line of work. I volunteer to put up lawn signs and this gives me greater access to the candidate and helps me build a rapport with them. This will be better than a phone call. Getting to know their staff is helpful, too. It doesn’t mean that they will always vote your way, but they will usually remember you. One legislator told me that I was the face of the low-wage worker for her and that she thought of me whenever she voted for something that would affect me.
"Decisions are made by those who show up." Aaron Sorkin may have written this phrase for a fictional show, but it rings true. Show up and advocate for people with disabilities. Show up and advocate for yourself and other DSPs.
This article was updated and reprinted with author approval from, Delfun, T. (2020). One DSP’s Story to Her Elected Officials. Frontline Initiative, 16(2). https://publications.ici.umn.edu/frontline-initiative/16-2/one-dsps-story-to-her-elected-officials