Frontline Initiative: DSPs Respond to COVID-19

Editor's Notes

DSPs respond to COVID-19

Direct support professionals (DSPs) have endured so much since the start of the COVID-19 pandemic. We dedicated this issue to hearing your stories and linking to resources because we know that COVID-19 has impacted so much of your day-to-day work. In this issue, you will read about DSP, Nevil Genjang who became ill with COVID and how it still affects him and his family. The issue includes stories from DSPs who saw COVID infect their co-workers and the people they support. Some recovered and some did not. It is very difficult to lose people whom you work with closely. It takes its toll on you. Helping the people you support process death while processing it yourself adds to the difficulty of being a DSP. Please look at the end-of-life resources linked to the article by Dr. Roger Stancliffe from the Institute on Community Integration at the University of Minnesota. These were designed to support people with IDD and their DSPs to plan for and process end-of-life decisions. In another article, DSP Melissa Salazar shares the ways that she practices self-care. Her advice is, “I have to take care of my needs so that I can provide the best support for the people I work with.”

Clear, concise information

There is a lot of misinformation about the COVID-19 pandemic. It can be difficult to separate fact from fiction. To provide clear, concise information for DSPs, we interviewed public health experts in our state who have worked with DSPs throughout the pandemic. Dr. Ruth Lynfield and Tammy Hale from the Minnesota Department of Health tell how to keep yourself, your family, and the people you support safe from COVID-19. They encourage DSPs to get vaccinated if you have not already. Vaccination works like a suit of armor to protect you and the people you support from COVID-19. Many of you have also shared your experiences in the three COVID-19 surveys that were fielded through the NADSP and ICI/UMN over the last year. Thank you for participating in these surveys; they help decision-makers understand what our field needs to respond to the COVID-19 pandemic. This issue of Frontline Initiative summarizes some key results, as well as recommendations that have been shared with policymakers. In this issue, we also share articles by David Ervin and Dr. Seth Keller. Both are from organizations who emphasized clear information and support for DSPs in their critical decision-making roles.

Vaccinations

In 2021, vaccinations became available to all adults, youth, and children over age five in the U.S. Given that people with IDD are often at higher risk for severe illness and death from COVID-19, many people with IDD, their families, and DSPs breathed a sigh of relief when vaccines became available. Many lined up to receive a vaccine, while others were or still are hesitant. This issue includes many stories about the importance of this moment for people who receive supports. Self-advocates, families, and employers needed to decide where they stand on vaccinating DSPs.You can learn about their journeys and experiences. Self-advocates Katrina Simons, Mikayla Hoskins, B.J. Stasio, Bryan Dooley, and James Meadours emphasize how vaccination protects them and others from COVID-19. They share how DSPs’ safe practices  at work and home affect their health. Family members Maggie Scocozza and Gail Wright also share how COVID-19 has significantly impacted their lives and the lives of their children who receive supports. Watch the public service announcement videos at the end of this issue, where DSPs and people who receive supports tell what vaccination has meant for them. There are many stories. If a story resonates with you, we encourage you to share it with others.

Kiley Brennan with her service dog.

Thanks to our guest editor, Kiley Brennan

Due to support from DirectCourse, in this and future issues of Frontline Initiative, we will seek editorial support from a DSP guest editor. This is a stipend position to provide insight, expertise, and support for the issue. We benefitted from our guest editor, Kiley Brennan’s expertise in the current issue. Kiley is a direct support professional at Shangrila in Aumsville, Oregon. Thanks a million, Kiley, for sharing your experiences and editorial support in this issue. You've helped us stay fresh and relevant! 

We have said it many times before and will say it again: DSPs are the backbone of supports for people with IDD. Your tenacity, commitment, and love of humanity has shined brighter during this pandemic. This issue highlights the essential work that you do and the critical decisions you make as you provide supports. We hope this issue inspires high-quality direct support, and shows the importance of your decision-making, such as your use of personal protective equipment and vaccinations in your work. While we often feel like we work alone as DSPs, the pandemic highlights how direct support depends on others. Getting vaccinated is the best way to protect yourself and others from COVID-19. If you are not yet vaccinated, we hope this issue of Frontline Initiative will influence you to do so.

Frontline Initiative • Volume 17, number 2 • 2021

Editors: Julie Kramme and Chet Tschetter

Marketing and Communications: Jerry Smith

Graphic design: Connie Burkhart

Web developers Shawn Lawler, Jonathon Walz, Kristin Dean

Editorial board

  • Tony Anderson, Executive Director, Valley Mountain Regional Center
  • Lisa Burck, Project Director, The Arc of Mississippi
  • Rachel Jacob, Director of Wellness Services, Mental Health Association of Ulster County
  • Mary Lawson, Executive Director, PAKS Developmental Services
  • Colleen McLaughlin, Associate Director, The Bogg Center on Developmental Disabilities & Rutgers Robert Wood Johnson Medical School Department of Pediatrics
  • Diane Potts, Associate Professor of Human Services, Tulsa Community College
  • Robert Schier, Owner, Camp DRIVE
  • Eryn Starck, Executive Assistant, Oregon Resource Association

NADSP staff

  • Joseph Macbeth, President and CEO
  • Desiree Loucks Baer, Chief Operating Officer
  • John Raffaele, Director of Educational Services
  • Dan Hermreck, Director of Certification and Accreditation
  • Nicole Dama, Office and Communications Manager

NADSP board of directors

  • Caitlin Bailey PhD (ABD), Past Chair - Director or Reseach and Evaluation, National Leadership Consortium on Developmental Disabilities
  • Katherine Dunbar, Secretary - Vice President of Accreditation, CQL | The Council on Quality and Leadership
  • Jeanne Farr, MA, Board Chair - Chief Executive Officer, National Association for the Dually Diagnosed
  • Chester Finn, Vice Chair - Special Advisor, New York State Office for People with Developmental Disabilities
  • Nicole Jorwic, Director-At-Large - Senior Director of Public Policy, The Arc
  • Monica McCall, Director-At-Large - President & CEO, Creative Options, Inc.
  • John McHugh, Director-At-Large - Executive Director, The Arc Mid-Hudson
  • Jesse Smathers, Director-At-Large - Community Relations Regional Director, Vaya Health
  • Josh Smith, Treasurer - Executive Director, Green Mountain Support Services
  • Cathy Ficker Terrill, Director-At-Large - Consultant, Alvarez and Marsal
  • Chet Tschetter, Director-At-Large - Institute on Community Integration, University of Minnesota
  • Maria Walker, Director-At-Large - Program Planner, Polk County Health Services
  • Rick Rader, MD, FAAIDD, DHL, Medical Consultant - Director, Habilitation Center, Orange Grove Center

Web: nadsp.org

If you are interested in contributing to Frontline Initiative please contact:

Julie Kramme or Chet Tschetter, Institute on Community Integration, University of Minnesota, E-mail: frontline-dsp@umn.edu

View past issues of Frontline Initiative here: z.umn.edu/frontlineinitiative

Frontline Initiative is supported through a cooperative agreement between the National Institute on Disability and Rehabilitation Research, U.S. Department of Education (#H133B080005) and the Research and Training Center on Community Living (RTC) at the Institute on Community Integration, University of Minnesota.  This issue is also supported through a cooperative agreement between the Association of University Centers on Disabilities (AUCD), the United States Centers for Disease Control and Prevention (#03-8818-22) and the National Alliance for Direct Support Professionals (NADSP). The opinions expressed are those of the authors and do not necessarily reflect the views of the RTC, Institute, University of Minnesota, NADSP, or their funding sources.

Frontline Initiative is available in alternate formats upon request.