The Arc Wisconsin submitted the following comments to the State Disaster Medical Advisory Committee on 1/15/21.

To: Members, State Disaster Medical Advisory Committee (SDMAC) Vaccine Subcommittee

Re: Vaccine Subcommittee Phase 1B

From: Lisa Pugh, The Arc Wisconsin

Thank you for considering these comments from The Arc Wisconsin, a statewide organization advocating for and with people with intellectual and developmental disabilities and their families. The Arc Wisconsin is part of a national network of more than 600 chapters that were established in the 1950s when people with I/DD were regularly institutionalized. We strongly support the inclusion of Family Care and IRIS program participants, including people with I/DD, as a priority population in the Phase 1B vaccine group.

Our work with and connection to national experts in the field of intellectual and developmental disabilities offers the following evidence and support for the prioritization of this population:

  • The National Council on Disability, the federal agency charged with advising The President and Congress, indicates people with I/DD have a 15% COVID mortality rate: https://ncd.gov/newsroom/2020/ncd-recommends-covid-19-vaccine-allocation-equity-individuals-idd
  • The nation’s largest private healthcare claims database, the FAIR Health National Private Insurance Claims (FH NPIC®) repository, finds that people with “developmental disorders” were among the likeliest to die from COVID-19. People with intellectual disabilities and related conditions  had the third highest risk of COVID-19 death (white paper)
  • On 12/23/20 the CDC specifically added Down syndrome to the list of people at increased risk of severe illness from the virus (one of just 3 additions to their list).
  • ANCOR is the largest national service provider association for providers of I/DD services. Data they collected from eight states found that “people with I/DD were twice as likely as members of the general population to die from COVID-19, despite being no likelier to contract the virus.” https://www.ancor.org/newsroom/news/ancor-issues-statement-need-prioritize-people-intellectual-developmental-disabilities
  • While not all people with I/DD live in congregate settings, their daily lives and activities typically happen in congregate settings as a majority of services are delivered in facilities with multiple program participants and staff providing direct cares. The latest data from the Institute for Community Inclusion (ICI) Boston shows that 42.7% of people with I/DD in Wisconsin participate in facility-based work and 52.2% participate in facility-based non-work (typically called day services).
  • According to the State of the States in Developmental Disabilities data, of the people with I/DD in WI who live with family caregivers, 26% of those family caregivers are over age 60.
  • For a variety of reasons, people with I/DD can have great difficulty practicing social distancing and taking mask-wearing precautions. Many require personal cares and daily supports that involve hands-on care from paid and unpaid caregivers.
  • The largest national survey of Direct Support Professionals (completed by the University of MN and the National Alliance for Direct Support Professionals – 9,000 DSPs—conducted April 23 through May 27) indicates that approximately 40% of the people supported by DSPs have either only fair or poor social distancing practices. The survey also indicates that DSP turnover has increased due to the pandemic, which means there are new DSPs revolving regularly as the direct care staff for waiver support recipients. https://publications.ici.umn.edu/community-living/covid19-survey/results-dsp-covid-19-experiences
  • DHS’ data from Family Care and IRIS programs shows great risk for people in these programs who all meet an institutional level of care. Data from this past week demonstrates that while Wisconsin’s long-term care program enrollment is 77,432 or approximately 1.4% of the WI population, people in these programs account for nearly 1/5 (18.2%) of state COVID-19 deaths.

We appreciate the important and difficult work you are tasked with. It is essential to proceed with equitable vaccinations of vulnerable populations in Wisconsin immediately. Thank you again for the opportunity to comment. We welcome the opportunity to provide further information.