Not all states report all types of settings within each category. These data exclude settings that primarily serve elderly adults, such as nursing facilities and assisted living facilities (ALFs), to best reflect cases and deaths solely among nonelderly adults with disabilities. For state-level data broken out by resident/staff cases/deaths, details on the types of facilities included in each state’s count, dates of data, links to the state reports, and additional notes, see Appendix Table 1.

The wide variety in state reporting makes it difficult to compare between states or have a complete understanding of how people with disabilities have been impacted by the pandemic. Among states reporting data, there were 111,000 cases and over 6,500 deaths across these settings as of February 11, 2021 (Figure 1). Of the 31 states reporting data, 8 states report data only for institutional settings, 8 states report data only for home and community-based settings, and 15 states report data for both settings. Thirty-one states report cases and 25 states report deaths. States also vary in whether they report only data on residents and staff separately or combined (Appendix Table 1). State reporting also varies in other ways, such as inclusion of only active cases (e.g., MA, UT), inclusion of data within broader long-term care reporting (e.g., ID, MD, MS, OK, GA, KY, LA, NC, ND), and level of detail in facility-level information. Additionally, states use different definitions or categorizations for the same types of facilities, making cross-state comparison challenging.

Data from a limited number of states suggest that LTSS residents in institutions other than nursing and assisted living facilities, as well as those in some community-based settings, face an elevated risk of COVID-19 infection (Table 1).Overall, limited data on the number of people in HCBS and institutional settings other than nursing and assisted living facilities makes calculating case or death rates difficult. However, eight states (CT, IL, NJ, OR, PA, WA, WI, TX) provide resident census data to calculate the shares of residents that have been impacted in certain settings. Among the states that provide census data on institutional settings, cumulative data show that between 19% (Connecticut’s mental health facilities) and 50% (Pennsylvania’s state centers for individuals with intellectual disabilities) of residents were infected. These rates are on par with the share of residents infected in nursing homes, which, using 2019 resident census data and resident case counts as of the end of January 2021, is about 50%. These rates are also higher than population level rates, which show more than 8% of the US population infected as of mid-February 2021. For states that provide census data on home or community-based settings, between 2% (Oregon’s Adults with Intellectual or Developmental Disabilities Foster Care HCBS waiver) and 19% (Illinois’ Community Integrated Living Arrangements group homes) of residents were infected. Given the limited sample size and wide state variation, this data should be interpreted with caution. However, this data supports other research suggesting that congregate settings, particularly larger facilities, are at high risk of having an outbreak.

Two pieces of legislation filed this month, if passed, would mean North Carolina will no longer be the only state with such a requirement.

House Bill 91, sponsored by Rep. John Bell, a Republican from Goldsboro, and Senate Bill 103, sponsored by Sen. Jim Perry, a Republican from Kinston, would provide a path for behavior analysts to obtain licensure and practice on their own. It would also create a board tasked with licensing, disciplining and setting rules for the providers.

“These are people that are looking for a roof over their head,” he explained. “They’re being targeted because they have steady governmental benefits, Social Security, Medicaid, and they’re taking advantage of them, putting them in a house and then not delivering on the promises.”

Valenta says the promise is for a room, food, and in some cases, medical care.

But residents soon learn the truth.

“No heating, no air condition, bedbugs infestation, rodents, no running water, no working bathrooms,” Johnson continues, “where they’ll stack 10, 15, 20 people and, remember, these people all need a higher level of care.”

He says residents in some homes may not even have access to their own money. Some victims with dementia may not understand how they got there.

In some homes, there are individuals known as “enforcers.”

“They’re anointed to be the caretaker. But realistically, they’re there to make sure nobody causes waves,” Valenta explained. “Nobody notifies authorities, calls the police. So, they can just keep the cash flow going.”

These certificates are part of the fragile safety net and are a critical alternative for those with significant support needs who will have employment opportunities terminated due to his bill. There is no offer of more support in this bill and quite frankly this bill is more than a slap in the face to some of our community members with the most significant support needs. 

We are not treating our neighbors as “less than” by acknowledging the support needs but we are treating them as “less than” when we pull their supports and safety net without additional resources. There are safeguards in place already within the current RCW and WAC which honor choice and alternative.