We are two autistic adults who depend on daily supports – help with things like making food and taking care of ourselves – to live in our homes. The COVID-19 pandemic has made it clearer than ever how vital these supports, known as home- and community-based services, are for people with disabilities.
As Congress works to pass a final COVID-19 recovery package, our country has a chance to invest in these lifesaving services – but we’re worried that once again, people with disabilities may be left behind.
Julia runs the Autistic Self Advocacy Network, a policy advocacy organization working on disability rights issues. In April of 2020, ASAN began tracking COVID-19 deaths in institutions for people with disabilities. This research has borne out what we’ve always known: Our government’s actions can make the difference between a society where people like us get the services we need to thrive in our communities and a society that leaves us to die.
Support services stopped
People with disabilities who get supports at home – like both of us – have been at far less risk than people living in institutions, but many of us have had our services disrupted.
Chris writes, “My services almost completely stopped until things were safe. I was worried without my staff and supports all my progress would disappear and I would be lost, including my ability to communicate. We have worked to build me a program based on what I like to do, where I get options everyday, and all the staff who support me think I am smart. It has changed my whole life.”
Thankfully, Chris’ services are back in place, but his experience emphasizes that home- and community-based services are a lifeline. They allow people with disabilities to lead self-determined lives – and keep us out of dangerous congregate settings.
We have known for decades that abuse, neglect and poor sanitation are endemic in congregate settings, like institutions and group homes. In 2007, for example, 94% of nursing homes were cited for violating federal health and safety standards, and that number has not improved in recent years.
Throughout the pandemic, people who live in congregate settings have consistently made up 30% to 40% of total deaths in the United States.
So when COVID-19 began to spread through institutions, many of which had prior documented safety violations, disability advocates weren’t surprised. Since the pandemic began, ASAN has tracked the deaths of more than 185,000 people with disabilities in congregate settings.
As disability rights advocates, both of us want more people to be able to get support to live in the community. Currently, people who get services from Medicaid, and need a certain level of care, are entitled to get services in an institution – but there are often years-long waiting lists to receive services in our homes.
More funding needed for community service
The disability community has been working for a long time to expand access to these services. We know what the policy solutions look like, and proposals like the Biden administration’s commitment to devote $400 billion in the Build Back Better agenda toward these services, and the Better Care Better Jobs Act, would begin to address this unmet need.
But we need Congress to take our community seriously, and include significant funding for these proposals in the recovery package they are debating.
Without a real investment, we fear our community will end up right back where we started. Vaccines, and resumed services, have lessened the isolation many people with disabilities felt earlier in the pandemic, but we are still dealing with its effects.
Chris writes, “During the pandemic there were no more outings, it all made me very afraid to leave the house. When I started seeing people again, with masks, that was good, but that anxiety has stayed with me and I still have a lot of fear to leave the house, something I am working on.”
A better normal
Some people have begun to talk about “going back to normal” after the COVID-19 pandemic. But the disability community has faced devastating losses during COVID-19 – and even before the pandemic, so many of the policies our society accepted as “normal” were already harming our community. Congress has a chance to address the roots of this problem and make sure that people with disabilities can always get the support we need safely in our own homes – and we need them to deliver.
We want to look ahead to a society that treats people with disabilities better than before – a society where every voice matters, every decision is honored, and everyone has the services they need. To create this society, we will need real policy change that invests in supporting disabled people in our communities, not locking us away.
Julia Bascom is the executive director at the Autistic Self Advocacy Network. Chris Jorwic is a Medicaid HCBS recipient in Elmhurst, Illinois, who shares his experiences using augmentative communication to get those in state and local governments to understand that every behavior is a form of communication, and for more services and supports for his brothers and sisters in disability.
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This article originally appeared on USA TODAY: COVID: People with disabilities need a better normal