April 2020
Special Edition
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ALS Emergency Relief Fund
Learn more about how we're adapting our
services to meet the needs of people living
with ALS during the COVID - 19 crisis.
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Greetings,
With the world bracing for the unknown impacts of COVID-19, the Greater Sacramento Chapter is ramping up efforts to serve and support the ALS community. As the only non-profit in our region to holistically care for people with ALS, we’ve not only had to adapt our services to ensure we continue to meet the needs of those living with ALS, but we’ve had to expand them to combat this crisis head-on.
When living with ALS, a common cold can quickly kill. These fears are magnified under the threat of a virus like COVID-19. As a chapter, our #1 priority is serving the ALS community with programs and services that keep them safe and improve their quality of life. Everything we do is designed to ensure we can deliver on that promise. When this crisis first hit California, our team answered the call immediately by reaching out to every person living with ALS to assess and meet their needs, wherever they were at.
In this Special-Edition Newsletter, you’ll learn how we responded to the crisis through our new ALS Emergency Relief Fund and how you can help us continue to deliver our mission and serve the ALS community in this time of crisis.
All my best,
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Amy Sugimoto
Executive Director
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In the best of times, we lean heavily on the support of our community to provide critical programs and services to people living with ALS in 24 counties. We are in urgent need of an additional commitment from our community so that we can continue to be here for those with ALS now, and when this crisis ends.
Please consider making a contribution to support our emergency relief efforts and provide unparalleled care and support for those we serve. We are all facing new fears and uncertainties, but for those living with ALS, COVID-19 is simply too great of a threat to bear.
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ALS Emergency Relief Fund
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As a Chapter, we are collaborating and adapting to weather this crisis, together. It is not business as usual, and our regular programs and services are no longer enough to help ALS families through this difficult and scary time. Scroll to learn more about our targeted relief efforts to protect our community, adapt our programs, and meet the unique needs of people living with ALS and their families during the COVID-19 crisis.
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Keeping people with ALS and their families safe and isolated in their own homes during the pandemic is the Chapter's #1 priority. In normal times, it costs approximately $200,000 annually to care for someone with ALS. We want to ensure that this crisis does not cause further financial harm to families living with ALS by assisting with:
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Grocery & supply purchases and delivery
-Utility bills
-Individual and group therapy for patients, caregivers, and their families to support them through the crisis
-Support for respite care and additional caregiving needs
-Durable medical equipment and speech communication device purchases
-Medical copays
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Access to Telemedicine
Those living with ALS still need access to multidisciplinary clinical care, despite the inherent risks of attending in-person doctor visits at this time. The Chapter is working to supply and install technology in patient's homes that will give them access to virtual medical appointments with physicians and clinical care teams.
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In times of isolation and fear, protecting our community's mental health and building a supportive network is more important than ever. Support group meetings and care consultations with Chapter staff provide a sense of hope and connection that helps the ALS community weather daily battles.
These must continue uninterrupted, and through the use of technology and web-based platforms like Zoom, the Chapter will continue to facilitate "face time" between our staff, patients, and caregivers.
In response, we have developed:
-Virtual Support Group meetings for patients and caregivers
-Individual care consultations for new patients
-Online individual & group therapy for families
-Virtual appointments with Care Service Coordinators
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While our drop-in Chapter Resource Center is closed to protect the health of our community, we remain available around the clock. The Chapter has extended care team hours until 9PM so that we are available to answer every call and email, complete equipment and supply porch drop offs, approve grant requests, and help those we serve cope with the inevitable issues that arise during a crisis, no matter the time of day.
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Accessible Transportation
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It's an unfortunate reality that many living with ALS will continue to need in-person medical care. When the need arises, we are prepared to provide immediate, accessible transportation to medical appointments.
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We have encountered incredible stories of resilient people, continuing their fight against ALS while facing new realities and new fears in light of the COVID-19 pandemic. Forgoing "traditional" means of support, expanding staff access, and getting creative to meet unique needs are the best ways for us to attack this crisis and its risk to our community.
Here are some stories of how, as a community, we've overcome some interesting and unexpected obstacles and faced the crisis head on.
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Support Group Meetings connect our community to their peers and to us these meetings help to galvanize the ALS community, while offering vital information, support and resources to those navigating life with ALS.
Moving towards virtual support groups to protect the safety of those we serve was a logical step to ensure our community continues to receive this vital service.
We are working toward increasing the number of meetings held monthly in an effort to ensure the ALS community receives additional support to carry them through the COVID-19 crisis.
"Having virtual support groups keeps patients and caregivers connected emotionally in a time where we are not able to meet in person. ALS as it is creates mental health challenges and isolation, and having the virtual ability to gather helps everyone feel closer and not so alone."
Denise W.-caregiver
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Addressing the Most Urgent Supply Needs
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Supply shortages of sanitizer, cleaning products, and masks are all over the news. For ALS caregivers, access to these supplies is necessary to keep those they care for safe and germ-free. The Chapter has distributed bottles of sanitizer and disinfectant wipes across our Northern California region, and will continue to ensure supplies make their way into the hands of all those who need them in our ALS community.
Distilled water is another vital lifeline for the ALS community that has been impacted by supply chain shortages. Those living with ALS use it to run their ventilators and bipap machines, which they rely on to breathe. Many families contacted the Chapter expressing their concern that there was no distilled water to be found. Chapter staff took action by crowd-sourcing water supplies through our social media channels and have so far dropped off over 50 gallons of distilled water to the porches of families who need it.
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Keeping Lines of Communication Open for the ALS Community
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Many people living with ALS will experience difficulty with speech at some point in their journey. If COVID-19 strikes and invasive ventilation is required to sustain life, those patients will require the support of an augmentative speech communication device in order for them to maintain communication with the world around them. Ensuring that people with ALS have access to the right communication equipment and accessibility tools makes it possible for them remain connected to their families, friends, and physicians.
Over the past year, the Chapter has loaned 90 pieces communication devices, while working closely with the patient's Speech Language Pathologists to find the right fit. With COVID-19 upon us, we anticipate the need for additional communication devices and support will be greater in the coming months.
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Helping Families Prepare for the Unexpected
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Grant funding is an important part of the Chapter's plan to protect those with ALS and their families in times of emergency and crisis.
Our grantmaking program, PALS 4 Life, provides financial assistance to help pALS remain safe and independent in their own homes.
Janet H., who is living with ALS, received grant funds to purchase a generator, ensuring that no matter what emergency ensues, she can run her breathing and mobility equipment.
"This disease, as you well know, takes so much independence from those afflicted. When we lose power, I lose what little independence I have when my ventilator, lift chair, cough assist machine and wheelchair have no power. Knowing that I will not have to endure these difficult situations because we will have a generator to help me get through, makes me so happy." - Janet H.
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Frequently Asked Questions
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The ALS Association has compiled a list of Frequently Asked Questions about living with ALS and the potential risks of contracting COVID-19. Click
here
to read responses from our professional medical and care services team.
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How The ALS Association is Pursuing 2020 Public Policy Priorities
During the COVID-19 Pandemic
ALS Association chapter executives from across the country held more than 250 meetings with members of Congress Wednesday as part of the Association’s annual “fly in” advocacy push. While the meetings generally occur in-person in Washington, D.C., this year’s discussions shifted to virtual platforms in response to the ongoing COVID-19 pandemic and emerging social distancing and shelter in place rules across the country.
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Medicare Coverage for Telehealth Visits Expanded During
COVID-19 Pandemic
In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits. These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service. This coverage applies to all
Medicare-approved telehealth services.
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ALS Association Joins Coalition Fighting to Protect Vulnerable Populations in Face of COVID-19
The ALS Association cosigned
a letter
with 27 patient and consumer organizations calling on Congress to act decisively to slow the spread of the coronavirus that causes COVID-19, particularly among vulnerable populations.
People with pre-existing conditions are at increased risk of infection and adverse health outcomes from COVID-19. For this reason, it is essential that any legislative package taken up in the Senate ensures that the health care system has adequate capacity to provide necessary care to patients with pre-existing conditions and robustly addresses public health needs.
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