Frontline Initiative: DSPs Respond to COVID-19

The COVID-19 pandemic has been challenging for all of us. Similar to direct support professionals (DSPs), as a doctor, I have been adjusting to the ever-moving news and information of how the virus impacts not only our health but also on our lifestyle, economics, and work.

Aside from family caregivers, DSPs have been the core support for many people with intellectual and developmental disabilities (IDD), especially those living in supportive independent living and group homes. Often the success and quality of life for many individuals with IDD depends on the DSP in being able to carry out supports.

The COVID-19 pandemic was not the first to impact so many in community. Pandemics have ravaged the globe over centuries. This includes the plague during the dark ages and the Spanish flu in 1918. Despite warning signs, the world was greatly unprepared when COVID-19 spread across the world. Preparedness and protection are based on knowledge and expertise. We all had to figure out what we needed to do to maintain health and safety. Experts and leaders who we look to for guidance and support had to step up as never before during these unprecedented times.

The support and care of people with IDD has always been a team effort. The nature of that team approach was tested from the beginning of the pandemic. The most successful efforts to offset the impact of the pandemic took an “all hands-on deck” approach. For those in congregate homes during the pandemic, DSPs were truly on the front line. DSPs were the first to notice any changes in people’s health and well-being in the face of an unknown and unrelenting virus. At the height of the pandemic, DSPs were tested daily. This highlighted their dedication and bravery.

The American Academy of Developmental Medicine and Dentistry (AADMD) came together as an organization to form a committee and workgroup early in the pandemic. We are a group of physicians, medical specialists, dentists, optometrists, nurses, and other clinicians committed to improving healthcare for people with IDD. We recognized early that COVID-19 could devastate people with IDD. We needed to lead, advocate, and educate.

We recognized early on how COVID-19 had potential to devastate people with IDD. We needed to take a leadership role in advocacy and education.

In addition to the focus on individuals with IDD, we recognized the key role of the DSP and their community support organization. DSPs were central to AADMD’s COVID-19 strategic plan. Notably, the pandemic exposed issues overlooked by policymakers and the gaps in knowledge for the effects of COVID on people with IDD. Our Policy and Advocacy Committee, chaired by Dr. Emily Johnson, invited key like-minded organizations who work with and serve those with IDD to collaborate on a statement that reflected the harsh reality of COVID-19 for people with IDD and those who support them.

In July 2020, the COVID-19 Support Guidelines for individuals with IDD was created and shared with other care providers. In addition, a joint position paper on COVID-19 vaccine allocation and safety was created with multiple partner organizations (aadmd.org/policy-statements ). The position paper emphasized equity for people with IDD to receive the vaccine.

In February 2021, people with IDD, their families, and DSPs were still not receiving equitable access to vaccines, so a Joint COVID-19 Vaccine Statement & Letter to the CDC was developed with our partners and shared with decision makers. This was updated in September 2021 to address the delta variant, and access to the booster dose of the COVID-19 vaccine.

We also emphasized the need for compassion and education to encourage vaccinations in the face of mandates that would impact DSPs. The AADMD worked hand-in-hand with NADSP leadership and other IDD advocacy organizations to meet these goals. AADMD Vice President for External Affairs (and NADSP national medical advisor) Dr. Rick Rader, along with Dr. Mark Macbeth (a biochemistry professor at Butler University) presented several webinars for DSPs through NADSP. Subjects of these presentations ranged from the basics of viral spread and strategies to lessen their community impact, to how vaccines are researched and created as well as their role in disease control. As soon as new information became available, NADSP, along with Drs. Rader and Macbeth, were able to quickly produce new webinars. These attracted a record number of viewers and became a key place where DSPs learned about responding to the COVID-19 pandemic. The webinars were also very valuable at the state and local levels as developmental disability agencies and coalitions utilized them to educate and address concerns.

Moving forward, AADMD stands next to DSPs. We recognize that they are indeed essential frontline providers. We salute the many DSPs who support people with IDD.

Resources

The facts about COVID-19 vaccines for direct support professionals

Your questions and our answers: COVID-19 vaccines for direct support professionals