In the State of Louisiana there are over 500 privately run intermediate care facilities for people with developmental disabilities (ICFs/DD), responsible for the care of between 3,500 – 4,000 adults with intellectual and developmental disabilities. These privately run facilities are almost exclusively funded through Medicaid, are licensed by LDH’s Health Standards Section (HSS), and range from smaller 4-bed group homes to larger facilities housing over 100 individuals.
Residents within these facilities are at significantly higher risk of contracting COVID-19 due to the nature of congregate settings, challenges related to conforming to social distancing protocols, and their day to day reliance on supports provided by various direct support staff. Additionally, individuals with developmental disabilities may likely experience more severe and prevalent COVID-19 related health outcomes, including death, due to the cognitive and/or physical challenges that many residents face with respect to their ability to communicate their needs/how they feel (making early detection more difficult). Also, the prevalence of pre-existing conditions and special healthcare needs within this population may exacerbate and/or accelerate COVID-19 symptoms beyond what might be expected in the general population.
On April 7th Disability Rights Louisiana (DRLA), recognizing the escalating reach of the pandemic (particularly in Louisiana) and the heightened vulnerability of the ICF/DD population, sent a letter to the Louisiana Department of Health (LDH) requesting data regarding, among other things, the number of COVID-19 cases that exist within the private ICF/DD population.
After several days, despite having been collecting data/statistics on other types of congregate settings, DRLA learned that LDH was not capturing the statistical data that had been requested, including:
- A breakdown of the total numbers of residents and staff at each ICF/DD, including numbers of diagnosed, designated, tested, hospitalized, and deaths resulting from COVID-19.
- Information about clusters (two or more COVID-19 cases that appear to be connected) in each facility and region.
The failure to collect this data was especially alarming considering the abundance of anecdotal reporting that DRLA collected in the previous few weeks regarding the ICFs/DD, including confusion regarding how to obtain testing, lack of equipment (including masks, gloves, sanitizer and even thermometers), staff shortages, challenges with social distancing protocol among residents, and an elevation of behavioral issues due to isolation/quarantine.
Thankfully, on April 23rd LDH began publishing data related to COVID-19 cases, hospitalizations and deaths among residents within ICFs/DD and promised to update such data on a weekly basis. LDH also began to report on similar information related to individuals with developmental disabilities receiving home and community based services (HCBS).
In an effort to confirm the data collected by LDH, DRLA began a separate campaign to solicit statistics related to COVID-19 cases, hospitalizations, and deaths among both residents and staff in the privately run ICFs/DD. Over the course of approximately 72 hours (April 27th – April 29th) members of DRLA’s Community Living Ombudsman Program (CLOP) spoke with staff at each ICF/DD and successfully collected data from all but 3 facilities (which reported to be closed due to COVID-19).
While DRLA believes that the numbers collected through this effort are still not fully representative of what may be taking place (due to a lack of testing and suspected reluctance of some facilities to self-report), they were significantly higher than those collected by LDH. With respect to positive cases among residents within ICFs/DD, DRLA data is nearly 40% higher than that of LDH. In terms of number of hospitalizations, DRLA data is 3x as high as what has been reported by the department. Additionally, DRLA data shows that at least 46 facilities have reported that either a resident or staff member has tested positive.
DRLA has shared the details of our data with LDH in an effort to determine why the discrepancies exist and how we might able to work together to get the most accurate picture of how this pandemic is affecting this population.
Perhaps most alarming is when the data is compared to the general population in Louisiana. According to DRLA data, the ICF/DD population contraction rate is 4x higher than that of the rest of Louisiana, as is the rate of mortality.
Provided the discrepancy in data collection, the high risk population, and the increased rates of contraction and mortality when compared to the general public, DRLA is strongly urging the Governor’s office and LDH to consider mass testing of the entire ICF/DD population. Mass testing is being considered and/or conducted in other congregate settings such as nursing homes, veteran homes, and jails/prisons. It is unclear why this is not being done within the ICFs/DD. DRLA is also advocating for the State of Louisiana to ensure that the ICFs/DD have dedicated PPEs, along with access to an adequate amount of thermometers and pulse oximeters. Additionally, DRLA believes that LDH should mandate facilities to notify the guardian of any resident who has been exposed to COVID-19 (either by another resident or staff member who has tested positive), and provide that guardian information on how to remove that resident from the facility, if they so choose.
DRLA looks forward to continuing to work with the State of Louisiana to address these issues and others.
Questions related to information in this article can be directed to Chris Rodriguez, Executive Director of DRLA: crodriguez@disabilityrightsla.org.
