The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

/in , , , /by

By: Nicole Jorwic, Senior Director of Public Policy, The Arc

After being all but ignored in the first three legislative packages that Congress has passed to address the COVID-19 pandemic, the disability community must rise up. We are once 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, severely 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 personal protective equipment (PPE) 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 MUST do to support the disability community:

  • Funding for a Medicaid grant program to support access to home and community-based services (to minimize the risk of people with disabilities being forced into institutions) and to support the DSP workforce. Congress should pass the Coronavirus Relief for Seniors and People with Disabilities Act.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.
  • Paid leave for caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  • Help for people on Supplemental Security Income (SSI) to access Recovery Rebates. People with disabilities on SSI are being asked to file needless paperwork in order to access economic stimulus payments. Congress should tell Federal agencies to use their existing authority to share data and file for people on SSI.

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.

Ready to act with us? Here are three easy ways:

Call CongressEmail Congress Tweet Congress
The Arc logo

New Videos From The Arc Spotlight Need to Close Institutions, Support Community Living

/in , , /by

In 2019, 37 states still have institutions where people with intellectual and developmental (I/DD) live away from their families and communities. Some may recall the horrible investigative reports over the last few decades that showed the terrible conditions in institutions, but many people fail to realize the facilities still exist and that state and federal dollars are still funding them. The Arc of the United States was founded by families trying to eliminate the need for those institutions and to get their family members with disabilities back home and included in their communities. While we have come a long way, there remains much to be done from state capitals to our nation’s capital.

The Arc developed this video to highlight the issue and to educate the general public about institutions, and to urge action to close the remaining institutions and support people with disabilities, no matter their level of need, back into the community.

At The Arc we also understand that it is more important than ever that we educate the general public about why inclusion and acceptance matters and that they join the fight to ensure that the progress that we have made as a disability community is not stalled.

We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about how Medicaid makes life in the community possible. We have to protect Medicaid from threats of cuts and caps that would drastically hurt people with I/DD.

To illustrate community living, check out our new video.

On the policy front, we have to talk to state and federal legislators about the fact that the federal Medicaid law that we fought so hard to save just a few years ago needs a face lift. Right now, services in institutions, nursing homes and other more segregated settings are mandatory while home and community-based services (HCBS) are optional under the law.

These are complex issues, but the basic fact remains everybody benefits when people with disabilities are part of the fabric of their communities. That doesn’t come by keeping people locked away in institutions – it comes through conversation, inclusion and acceptance that we are all better together.