First, we share in the heart-felt sorrow of everyone who has lost a loved one during the COVID-19 pandemic. We cannot let the enormity of the collective loss overshadow such personal pain. We must also recognize that existing and unaddressed injustices – structural racism and health care disparities – have amplified the impact that the pandemic has had on communities of color, especially the Disabled Black, Latinx, Indigenous and Immigrant communities. We are united with the rest of the social justice movements in continuing our fight for justice, while at the same time, many of us fight for our very lives.
Disabled and elderly people in nursing facilities and other institutions across the United States are dying from COVID-19. For many, news of the first deaths at the Kirkland nursing facility in Washington state was horrifying and shocking. Now, weeks into the pandemic – deaths in nursing facilities and other institutions have become ubiquitous. More people in these institutions die every day from COVID-19, and many of these deaths won’t ever be counted as part of the official COVID-19 death toll.
The most effective tool to stop COVID-19 is social distancing, but that isn’t an option for people in nursing facilities and other institutions. These individuals have no private space where they can retreat. They are defenseless. The risk is even greater because people who assist them may work in multiple facilities which increases the opportunity for spreading infection and illness. In fact, one nursing facility administrator has urged families to take their institutionalized relatives from his facility and bring them home because he simply cannot protect them.
The problem is that these families don’t have that option. If community living for Disabled and elderly Americans were actually a viable option, many of these family members would never have ended up in the institution in the first place.
The policies and practices that drive us into institutions are as common as the fear of the coronavirus. Some of us are forced into institutions because the state or managed care company refuses to pay for services and supports we need to live in freedom. Some are denied services because of racial bias. Others cannot remain at home because there is no basic access, and many simply can no longer afford housing because most of our money goes to the state in order to qualify for Medicaid. Consequently, we are forced into dangerous and expensive institutions.
Nursing facilities are not the only institutions placing people at risk of COVID-19. ADAPT is in solidarity with immigration advocates who are calling for the release of people being held in detention centers. We embrace the call to action by justice reform advocates who are demanding the release of those who are incarcerated. While the rest of America is being repeatedly told to “stay at home,” we all are locked away and our lives hang in the balance.
Simply telling elderly and Disabled people that they can leave doesn’t change the system that keeps us in institutions. Sadly, the State and National policies that have driven Disabled and elderly Americans out of their homes and into institutions continue to be reinforced during the pandemic. It is ironic that some of the Governors who are being celebrated for their efforts to combat the spread of the coronavirus, like Governor Cuomo in New York, continue to advance policies that force Disabled and elderly Americans into institutions.
Consequently, 2 million of us are locked away in institutions where we die untimely deaths, and right now, thousands of us are dying behind the walls of the institutions.
Although the speed and virulent nature of COVID-19 is new, the underlying problem is not. During the fall of 2018, an outbreak of a deadly adenovirus sickened 36 children and killed 11 other children in a New Jersey nursing facility. We know that when the COVID-19 crisis passes that more disabled people – including children – will continue to die.
It doesn’t have to be this way. There is no doubt that if the residents of the Life Care Center in Washington State or the Wanaque nursing facility in New Jersey were able to be supported independently, they would have been at far less risk of dying.
For three decades, ADAPT has been fighting to Free Our People. On January 15, 2019 – the 90th anniversary Martin Luther King Jr.’s birth – the Disability Integration Act was introduced. This date was chosen as a testament to the impact that he had in the fight for all civil rights and how his work inspired the creation of ADAPT by our founder Wade Blank. By May 2019, ADAPT and others secured enough co-sponsors of the Disability Integration Act (HR.555/S.117) in the House of Representatives to pass the bill which would give people with disabilities an enforceable right to live in freedom. Even so, the bill has not moved in committee despite pleas with House Leadership to take action.
House leadership has refused to explain why the Disability Integration Act hasn’t moved despite broad-based support, but we have been told the bill isn’t moving because it – and our freedom – “cost too much.” Cost should not be an issue. During the last few weeks, Congress has spent literally trillions of dollars in response to the COVID-19 pandemic.
The COVID-19 pandemic reminds us that ADAPT’s fight for Life and Liberty isn’t just rhetoric. The freedom of people with disabilities – young and old, Black, Brown, LGBTQIA2S+, everyone – is literally a matter of life and death. Our policy makers need to recognize that dismissing our plea for freedom is as ableist – and has the same deadly effect – as the policies that ration healthcare and ventilators because Disabled lives are not seen as worth living.
In the coming weeks, Congress will have the opportunity to ensure that elderly and disabled people no longer die needlessly in institutions. ADAPT calls on Congress to include the text of the Disability Integration Act in the next piece of legislation it passes addressing the impact of COVID-19 so that people with disabilities and the elderly people are no longer forced into unwanted institutionalization where we are constantly at risk of dying.
Today, Congress has a choice: give us our freedom or condemn even more of us to death.