By: Nicole Jorwic, Senior Director of Public Policy, The Arc
Here we are again, fighting for our lives in Congressional negotiations – this time during a global pandemic. And the outcome will impact the services people with disabilities rely on, strain systems that provide those services, and may close down service providers all over the country that support people with disabilities to live the lives they choose.
This is far from the first time in my five years in Washington, DC, that I have watched Congress overlook the disability community. In 2017, the year Congress tried again and again to cut funding to Medicaid, a program that people with disabilities rely on for supports and services, we made them pay attention. But it took people with disabilities and their families coming forward to share their most personal stories, and some literally putting their bodies on the line, to show Congress that Medicaid means life and death. Together we were strong enough to hold off the full repeal of the Affordable Care Act, protect the integrity of the Medicaid program, and show the power of our community.
And, again, it seems the issues that matter to the disability community are being ignored. Our chapter network is on the front line of this pandemic: some of the people with disabilities they serve have passed away from COVID-19, and others don’t have the supplies for staff to safely serve or quarantine. The direct support professional, or DSP, staff often help people with disabilities with very personal tasks that can’t be done from six feet away, yet the gear necessary to do these tasks safely is scarce. And in the coming weeks and months, we know that some service providers will be forced to close, leaving families like mine with nowhere to go.
But the fight to save Medicaid in 2017 showed that when we band together as one voice, we can make things happen.
Despite the magnitude of what we are facing as a country, this is the time we must once again share our stories. We must demand that Congress address the needs of the disability community in legislation to combat COVID-19.
Here is what Congress should do:
- COVID-19 is particularly dangerous in congregate settings, and too many people with disabilities are currently in those settings, or at risk of unnecessarily ending up in those settings if there are not enough supports for services at home and in the community. Congress should ensure that legislation includes funds ($10-$15 billion) to support delivery of safer home and community-based services AND funding to support the hiring and hazard pay for the community workforce.
- COVID-19 is requiring heroic work from health care professionals from around the country. Those professionals include DSPs and home health workers who do not have the personal protective equipment that they need to keep themselves and the people with disabilities that they serve safe. This will lead to illness and death. Congress should ensure that DSPs and home health aides have the supplies they need.
- COVID-19 is closing programs all over the country, leaving people with disabilities and their families scrambling to come up with alternate supports. In many cases family caregivers won’t be able to work so that they can provide those services and supports. Right now, the legislation passed will not cover paid leave or paid sick leave for family members, like me, who may need to miss work to provide care for adults with disabilities and aging family members.
- The COVID-19 pandemic economic impact is causing Congress to consider cash payments to individuals. People with disabilities should receive an equal amount of stimulus as everyone else without it impacting their access to Medicaid and other social support programs with strict asset limits. Congress should also boost Social Security and Supplemental Security Income payments to ensure that people with disabilities have the resources to protect themselves.
The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities, their family members, or the DSP workforce, #WeAreEssential.
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