Advocates for Developmentally Disabled Note Lack of Data for Congregate Care Facilities Means That Mortality Rates Could Be Even Higher

November 16, 2020 | Press Release.pdf | InsiderNJ.com online article

PRINCETON, NJ – November 16, 2020 – A new study has found that people with intellectual and developmental disabilities are three times more likely to die of Covid-19, compared to the general population. However, advocate Robert Stack, Founder and CEO of Community Options, notes that lack of official data could mean that rates are even higher.

The latest study, released last week by the nonprofit FAIR Health, who hosts the largest private health insurance claims database, was based on an analysis of private health insurance claims throughout the U.S. The analysis was performed in collaboration with Dr. Marty Makary, a public health expert and professor of health policy and management at the Johns Hopkins University School of Medicine, along with the West Health Institute, an organization of nonprofits concerned with aging and lowering the cost of health care to seniors.

“We hope that this report brings more widespread recognition to this hidden crisis. But to those of us within the community, this is not new;” stated Robert Stack, President and CEO of Community Options. The organization, which maintains its headquarters in Princeton NJ, provides housing and employment support for people with disabilities throughout 10 states. “Earlier this year, an adjunct professor at Syracuse University issued a similar report finding that pandemic mortality rates for people with developmental disabilities was 16% in New York and 14% in Pennsylvania compared to 8% among the general population.”

“However, we believe that mortality and infection rates likely are much higher than these reports indicate,” added Stack. “Alarmingly, data through most state health departments is inconsistent or nonexistent. Apparently, the life of individuals with cognitive disabilities is so undervalued that states have not – nor are they required to – track these incidents in the large, congregate care institutions where many individuals are warehoused.”

In October, a report compiled by staff of the U.S. Senate Committee on Health, Education, Labor & Pensions (HELP) revealed “a substantial lack of data for congregate care settings for children and adults with mental illness, children and adults with disabilities, and older Americans.” The conclusion stemmed from a review of all 50 states’ and DC’s coronavirus public data websites for reporting on congregate care settings and current guidance from federal health agencies to determine the type of settings included in COVID-19 reporting and the type of settings included in federal guidance.

That report prompted a letter to the Centers for Medicare and Medicaid Services (CMS) from U.S. Senators Elizabeth Warren (D-MA), Patty Murray (D-WA) and Margaret Wood Hassan (D-NH) – members of the HELP Committee. They requested that CMS issue guidance for mandatory comprehensive data collection and reporting on congregate care settings to better understand and address the impact of COVID-19 on people with disabilities and older Americans in these settings.

The letter to CMS also noted that current public health guidance indicates a high spread of the virus in congregate living conditions and among high-risk populations – describing these facilities as sites where “care is provided in one location where many people – often more than 10 – are located.”

“For the past 30 years, we have raised concerns about the warehousing of people with disabilities in large institutions, as opposed to community-based housing programs. And now this outdated form of care is costing lives,” stated Robert Stack. “We need to act now. That means immediate steps to prevent infection and deaths, immediate establishment of tracking and reporting requirements for these facilities, and a definitive time frame and plan to depopulate large, congregate care facilities.”

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About Community Options, Inc.:
For over 30 years, Community Options has developed housing and employment supports for people with disabilities – supporting thousands of people from over 40 offices across 10 states. The organization maintains its headquarters in Princeton, NJ. Community Options provides advocacy assistance to empower people with disabilities because all people – regardless of ability level – should live and work in the community with dignity, choice and self-determination. For more information please visit our website: www.comop.org and to follow along with the #AllItTakes campaign, search #AllItTakes on Facebook, Twitter and Instagram.