By Nicole Jorwic, Senior Director of Public Policy

At an institution in Denton, Texas, where 400 people with
disabilities live, 54 have COVID-19, and 50 employees are infected.

At a state run facility in Danvers, Massachusetts, 40% of
residents are infected
, plus 55 nurses who work at the facility.

In Illinois, two
institutions are experiencing such extreme outbreaks that the National Guard is
being called in to help with temperature checks.

And in New York, Maryland, Washington State, Georgia, and most
likely in every state – people with intellectual and developmental
disabilities, or I/DD, have lost their lives to this vicious virus.

People with I/DD face grave danger in the face of the COVID-19
pandemic – with underlying health conditions, many are at a higher risk. Then why aren’t you hearing about it? Nursing homes and
cruise ships, overflowing emergency rooms and makeshift hospitals set up in
Central Park fill our television screens and headlines.  Why are people with disabilities far too often
ignored when we are focusing on who is impacted by this crisis? Who is counting
– and revealing – the dangers facing people with intellectual and developmental
disabilities, particularly those living in large, congregate settings?

You see, in 2020, in
36 states, tens of thousands of people with I/DD live in institutions. These
settings are called many things, like Intermediate Care Facilities for People
with Intellectual and Developmental Disabilities (ICFs), “state schools,” “state operated
developmental centers” or “state hospitals.” And, thousands of people with I/DD
live in nursing homes too.

COVID-19 is running through these large facilities in every
state like a wildfire, but where is the outrage?  Does the general public believe that these
places shut down decades ago? Or is it because these institutions are not
publicly reporting what is happening to the residents and staff?

Information about the tremendous risks posed by this
pandemic to people with disabilities, whether they live in an institution or
nursing homes, must be captured. The Centers for Medicare and Medicaid Services
just announced that they are requiring nursing homes to report cases and deaths
from COVID-19 to the Federal government. But that requirement was not extended
to ICFs or institutions for people with disabilities, nor does it require data
from nursing homes that tracks whether or not a sick or deceased individual had
a disability. CMS must extend these same requirements to all institutional
settings, including ICFs, institutions, and nursing homes, and require that
people with disabilities are specifically tracked in this data collection.

For my entire life, the disability community has been
fighting to complete what began decades ago with the families and individuals
with disabilities fighting to get people out of institutions. We must create
the capacity for a home and community-based service (HCBS) delivery system to
serve all who need supports. We must build up the workforce needed to provide
those services and create the flexible supports that people need so that people
with disabilities can be safe in their homes and communities.    

We will get there by investing in HCBS. Representative
Debbie Dingell and Senator Bob Casey have introduced bills to create grants for
states to expand these services during the pandemic, and pay the workforce that
provides those services what they should be paid to do the important work they
do, providing support for as much independence as possible in the community.

Congress must include those HCBS grants to states in the
next COVID-19 response legislation to keep people with disabilities out of
dangerous congregate settings and in their homes and communities. And when this
is over, I won’t rest until we have the reckoning that this country needs to
fully understand where people with disabilities belong: safely integrated in
their homes and communities.

If we are all in this together, then we all count.

Tell Congress #WeAreEssentiall today.

The post High Risk, Infected and Dying of COVID-19 – But Who Is Counting? appeared first on The Arc.