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The pandemic’s impact on the developmentally disabled is preventable. Here’s how

November 23, 2020 |

The pandemic's impact on the developmentally disabled is preventable. Here's how

A study released in November by the nonprofit FAIR Health found that people with intellectual and developmental disabilities are three times more likely to die of COVID-19, compared to the general population. Yet, even as the pandemic surges again in New Jersey, nothing has changed to prevent this tragedy, especially for those warehoused in large, congregate care facilities.

Earlier during the pandemic, the plight of individuals in nursing homes correctly received quite a bit of public attention. Yet, that was because there is a reporting structure that allowed the information to become publicly known. In fact, through that information process, the U.S. Department of Health and Human Services was able to analyze the data and recommended improved programs to state regulators.

However, lost in the haze of the pandemic is the fact that no such federal requirements have been implemented to help other congregate care settings such as large institutions for the developmentally disabled to improve their response to the pandemic – although they serve similar populations. Why? Amazingly, because no consistent or official data collection program exists for most institutions outside of nursing homes.

In an October report compiled by staff of the Senate Committee on Health, Education, Labor & Pensions (HELP) it was announced that state-level data reporting “reveals a substantial lack of data for congregate care settings for children and adults with mental illness, children and adults with disabilities, and older Americans.” That conclusion was drawn following a review of all 50 states’ and DC’s coronavirus public data websites for reporting on congregate care settings.

The simple fact of the matter is that none of these institutions are governed under the same requirements as nursing homes. Therefore, data is not collected, nor reported. The study released by FAIR Health had to be based on an analysis of private health insurance claims throughout the U.S. — information to which only FAIR Health has access.

This discovery prompted Sen. Elizabeth Warren, D-Massachusetts, Sen. Patty Murray, D-Washington and Sen. Margaret Wood Hassan, D-New Hampshire, to call upon the Centers for Medicare and Medicaid Services (CMS) to issue guidance for mandatory comprehensive data collection and reporting on congregate care settings. In a letter to CMS, they specifically noted that “current public health guidance indicates a high spread of the virus in congregate living conditions and among high-risk populations.”

While we should be thankful that FAIR Health released its findings publicly and should applaud these Senators and staff for their revealing research and call to action, we need to take this a step further.

For the past 40 years, advocates have raised concerns about the warehousing of people with disabilities in large institutions. And now this outdated form of care literally is costing lives. and the USA TODAY Network recently chronicledreport issued by the New Jersey Disabilities COVID-19 Action Committee that outlined 23 ways in which the state failed to protect the disabled community during the crisis.

“Family organizations representing the residents who are their loved ones and wards were shut out from meaningful communications with the state, and were forced to resort to a strident citizens’ lobby to give them voice in a lifeand-death scenario,” according to the report, which concluded that the state needed to be able to identify how many people were living in congregate care settings in New Jersey.

“This identification is critical to ensuring that the state is able to count individuals who may be at risk of illness or death during a pandemic or other emergency,” the report said.

We need to act now. That means immediate mandates for such facilities to track and provide authorities with accurate infection and mortality data, and immediate action to prevent further deaths of people in large, congregate care facilities. It also means an accelerated timetable for the depopulation of these outdated, human warehouses.

Robert Stack is founder, president and CEO Community Options, a national not-for-profit entity operating in 10 states, including New Jersey, that seeks to promote the inclusion of people with disabilities in the community through person centered and natural supports and collaboration with community partners to increase accessibility to services.