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IDD and COVID-19: What Providers and Caregivers Need to Know

From vaccines to service disruptions, here's how COVID-19 has impacted the IDD community and what you can do to prepare for what's next.

While COVID-19 has touched the lives of nearly every person on the planet, it has been an especially harrowing event for those in the intellectual and developmental disability (IDD) community.

Research has shown that individuals with IDD are “more likely to be exposed to COVID-19 and have poorer outcomes than the general public; even though they take the same precautions as non-IDD individuals. They are also more likely to have experienced major disruptions in the public and private services that they depend on, increasing inequality in care and putting further burdens on already overburdened systems of support.

According to a study conducted by the National Institute of Health, prior to COVID-19 individuals with IDD were already found to have “significant health differences and disparities” compared to the general population. This health gap is only widening under the siege of COVID-19, where the virus is disproportionately affecting the IDD community.

However, there are ways for agencies and caregivers to help reduce this health gap and prepare yourselves and individuals with IDD in your care or community for what comes next in the fight against COVID-19.

How COVID-19 Disproportionately Impacts the IDD Community

While the CDC has stated that “disability alone may not be related to a higher risk of COVID-19,” they have identified different types of disabilities that may place an individual at higher risk of infection. These include:

People with limited mobility who may not have the ability to avoid coming into contact with infected individuals, such as family members or direct support providers
People who may have difficulty understanding or practicing preventative measures, such as facemask wearing or hand washing
People who may not be able to communicate with healthcare providers or support providers when they are experiencing symptoms of an illness

Many IDD community members experience one or more of these disabilities, thus potentially putting them at a higher risk for contracting COVID-19.

Not only that, but a recent study has found that individuals with IDD are twice as likely as the general public to die from a COVID-19 infection. This alarming rate of morbidity is why providers must ensure higher standards of care and higher vaccine priority be given to people with IDD.

What can DSPs and family members do to reduce these risks?

After understanding the risks that are present for people in the IDD community who may be exposed to COVID-19, how can direct support providers and family members help reduce these risks?

In addition to handwashing, social distancing, and mask-wearing, there are a few other steps that agencies and caregivers can take, including:

Putting a plan in place in the event that a direct service provider contracts COVID-19, which includes creating a list of alternative caregivers and support agencies that are available to step in and cover the DSP’s absence
Preparing clients with IDD for the changes that could occur should they or someone close to them get sick.
Reviewing with a client how to monitor themselves for signs of illness and reminding them of the steps they can take to stay healthy.

By remaining vigilant and having a plan in place to prevent care disruptions, DSP’s and other caregivers can reduce the risk and severity of an IDD individual contracting COVID-19.

However, the most surefire way to reduce the risk of COVID-19 is for DSP’s and clients alike to be vaccinated against the virus.

COVID-19 Vaccinations and IDD: What Providers and Their Clients Need to Know

Compared with the general public, studies have shown that people with IDD have a much “higher prevalence of co-morbidities associated with poorer COVID-19 outcomes.”

This is why vaccinations are so crucial for people with IDD, their DSPs, and their families. The only way to significantly reduce the risk of people with IDD and their DSPs contracting the virus is to achieve community-wide vaccinations.

Currently, caretakers and DSPs are eligible to receive the vaccine in most areas. Those that are eligible should make it a top priority to schedule and receive their vaccines to protect themselves, as providers are also at a high risk of contracting the virus.

You can check if you are currently eligible to receive a vaccine in your area and what steps you need to take by using the free Plan Your Vaccine tool or searching on your local government’s health site.

The Iowa Association of Community Providers reported that in 2020, 83% of their employees tested positive for COVID-19. By ensuring providers are vaccinated, it reduces the risk of service disruptions for clients and reduces the number of active cases in the community.

But vaccinating providers is not enough. It is crucially important to push people with IDDs to the top of the list for vaccine priority to help reduce the rates of infection and morbidity associated with COVID-19.

Unfortunately, many current vaccine allocation guidelines do not specifically include considerations for people with IDD who are not living in group settings.

In December 2020, the American Association on Intellectual and Developmental Disabilities laid out a list of recommendations for local leadership to consider including people with IDD in their vaccine rollout plans, which recommended that:

Individuals with intellectual and developmental disabilities who live in group homes or other community residential settings should be considered at equivalent risk to older adults who live in congregate settings and thus be included in equivalent phases of vaccine allocation.
All direct support professionals (DSP), including group home staff, in care settings aiding persons with intellectual and developmental disabilities should be considered essential health care workers and should be included in the appropriate phase of vaccine allocation.
Given increased rates of serious illness and death from COVID-19 in people with intellectual and developmental disabilities, persons with this diagnosis or condition should be explicitly included in the list of high-risk diagnoses that are used to determine vaccine priority. Individuals with IDD, as well as those who live with or provide their care, must be included in the same phase of vaccine allocation, regardless of living situation.

Source: https://www.aaidd.org/news-policy/policy/position-statements/covid-vaccine-allocation-and-safety

There has already been some progress on this front. In February 2021, Governor Newsom of California pledged to make vaccinating all 350,000 people in the IDD community in California a priority, giving families and DSPs of people with IDD a huge sigh of relief.

Additionally, the National Council on Disability (NCD) published a recommendation in December 2020 that individuals with IDDs be included in the vaccine allocation for high-risk groups.

But since it is up to state and local ordinances to allocate their vaccine rollout, many people with IDDs are currently being overlooked. It is important for agencies that serve the IDD community as well as families of people with IDDs to reach out to local lawmakers and urge them to acknowledge the need for vaccine prioritization for individuals living with IDD nationwide.

To Beat COVID-19, The IDD Community Must Work Together

COVID-19 is a crisis unlike any that this community has faced before, and it requires the efforts of everyone in the community to ensure that the most vulnerable among us receive the care and protection that they deserve.

At SETWorks, we are dedicated to supporting providers by giving them the tools they need to manage their IDD programs from intake through final billing. By helping organize and automate your internal processes, we want to give you more time to focus on what really matters; giving your clients the exceptional care and support they deserve. Request a demo today to see our platform in action!