The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

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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
A woman smiles in front of a storefront window, wearing a yellow shirt, turquoise necklace, and a ponytail

Perseverance in Planning: The Value of Building an Inclusive Volunteerism Program

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Building an inclusive volunteering community can be stressful, but it is often incredibly rewarding as well! This year, we asked Erica Delma from Holly Ridge Center to share her journey as a grantee of The Arc’s Martin Luther King, Jr. Day of Service project through a letter to herself. She spoke about finding meaningful work for her clients, the partnerships that blossomed because of volunteering, and the spirit of helping others that has lasted long after the events are over.

Dear 2018 Erica,

I know that the last few months since you applied for the MLK grant have been a roller coaster of emotions. As Development Director of Holly Ridge Center, you are responsible for attracting, growing, and stewarding resources to further the important work the Center does in our community. When the opportunity presented itself to apply for funding to develop inclusive volunteer programs, you thought it was a great match for the Center’s focus on inclusivity and finding people with autism meaningful places in the community. When you realized the focus would be on addressing food insecurity, an issue that you have been passionate about for years, you could not have imagined a better fit. And, one day you got the notice – you got the grant!

I want you know that you are joining a group of people and organizations throughout the country who are equally passionate. And, I want you to know that The Arc staff will be there to help you every day to be successful and navigate challenges.

You will get an opportunity to work with multiple community partners that will blossom into deeper relationships. You will add in even more partnerships with Meals on Wheels, the Kitsap Rescue Mission, and other service organizations.

On MLK Day, you will host a very successful volunteer fair at the Marvin Williams Center. Many people will tell you how eager they are to work with you in the future. The volunteers you support will have more opportunities in the community, and they will be eager and excited to do more and help others.

Thank you for your enthusiasm and energy for connecting the dots to promote inclusivity, volunteerism, the spirit of Dr. Martin Luther King Jr., and addressing food insecurity. There will be work nights and even longer days, but all your hard work will pay off!

Sincerely,
2019 Erica