Increasing evidence is showing that people with intellectual and/or developmental disabilities (IDD) are at much higher risk for contracting COVID-19, for being hospitalized with the illness, and an increased mortality rate from the illness.
- A Johns Hopkins analysis of insurance data indicates people with IDD are three times more likely to die when infected with COVID-19.
- An ANCOR (American Network of Community Options and Resources) report from multiple sources indicates higher mortality risk.
- Wisconsin’s Medicaid Adult HCBS Waiver Program data shows that as of February 2, 2021 individuals in community settings had higher rates contracting COVID, higher rates of hospitalization, and higher rates of death than the general population and most affected were those in community/home settings.
Why might this be the case? Because the virus is new, we don’t know for certain, but several things increase these risks for people with IDD:
- Living in group settings where COVID-19 is easily spread
- Needing services that are delivered by direct care staff and other health/support providers, often from staff serving multiple households
- Having genetic or other conditions that affect health, and more rapid aging
- Difficulty with prevention activities like consistent mask wearing, hand washing, social distancing
- Less access to routine health care
- Bias and difficulties with communication in health care settings that affects quality and quantity of care
The state of North Carolina has developed a priority order for vaccines, distributed to the state from the federal government. Because of the shortage of COVID-19 vaccines and the need to vaccinate those at higher risk first, this priority order currently makes no designation for people with autism, people with other intellectual and developmental disabilities, or people with disabilities in general. Those individuals currently can only get vaccinated if they are already part of those prioritized in Group 1, 2, or 3:
1. over the age of 65 (Deeper Dive Group 2)
2. in higher risk settings like congregate living arrangements like group homes, ICFs, nursing homes (Deeper Dive Group 1)
3. living with at least one unrelated roommate and also getting community-based services (Deeper Dive Group 1)
4. in a paid or unpaid occupation in healthcare or caregiving (Deeper Dive Group 1)
5. works in an essential service, starting with childcare and PreK-12 school staff (Deeper Dive Group 3)
Other states have opted to include people with IDD, or more broadly people with disabilities, in earlier priority groups. At last count 20 states had prioritized people with IDD in Group 1, and 8 more have placed them in Group 2. You can view priority groups through one of these state COVID distribution trackers:
- Center for Dignity in Healthcare/Johns Hopkins
- Kaiser Family Foundation
- The National Academy for State Health Policy
Many national groups have recommended that the CDC and the Federal government also prioritize people with IDD for COVID-19 vaccination.
What the Autism Society of North Carolina is doing
ASNC, with its IDD community partners, has been advocating that the state prioritize people aged 16 to 64 with autism and other IDD conditions for vaccinations now, in Group 1, along with the health professionals and caregivers that may be working with them, rather than in later priority groups.
We were able to successfully advocate for the inclusion of people living in the community with roommates and getting services in Group 1, given their similar risk to those in small group home settings (Deeper Dive – Group 1: NC DHHS COVID-19).
We have met with officials from NC DHHS to make our case for earlier vaccination for all with IDD, including autism. At this time NC DHHS has stated that they believe that most with IDD would be included in Group 4, and is considering changing the language for Group 4 eligibility to specifically include people with Down Syndrome and IDD (which it does not currently list).
What actions you can take
If you have concerns about the vaccine prioritization for people with autism and other intellectual and/or developmental disabilities, you can contact Governor Cooper and NC DHHS Secretary Mandy Cohen through the Governor’s contact form.
When writing please follow our tips for contacting elected officials and in our Advocacy 101 Toolkit on our website. In general, be respectful, tell them the reasons you are concerned about getting access to the vaccine, and ask them to allow people with IDD to get the COVID-19 vaccine now.Tags: ASNC, autism advocacy, autism health care, autism north carolina, coronavirus, COVID-19, Developmental disability, public policy