Checkbox-571: #1, #3, #5, #7
Legal-name: The ALS Association Golden West Chapter
Address: P.O. Box 565
City: Agoura Hills
Officer: Fred Fisher, President and CEO
ContactName: Cherryl Goldstein
Title: VP of Development
GrantPurpose: Transforming access to care to ensure the health and safety and well-being of the ALS community, a population vulnerable to the devastating impact of COVID-19.
Periodoftime: May 1, 2020 through December 31, 2020
Audienceserved: People with ALS and their caregivers are the audience served – this includes, low income individuals, small business owners, unemployed, food insecure, elderly, youth, disabled, and veterans.
Demoofaudience: Demographics are diverse – Chapter clients include individuals of all ages, ethnicities and income levels.
Numberofserved: Approximately 60 individuals will be served.
District: We anticipate that all Long Beach districts will benefit from the project.
1. What disaster recovery service have already been provided? : As a result of COVID-19, the Chapter is experiencing new and increased demand related to every aspect of our community based wraparound program delivery model. Immediately upon understanding the nature and implications of COVID-19, the Chapter began to share important information online related to preventing individual infection, containing virus spread and addressing the disease progression and treatment needs of people living with ALS. The Chapter also rapidly increased its capacity to utilize technology to deliver programs and services and stay connected with clients, constituents, and stakeholders.
The Chapter has transformed it’s Care Services model and offerings, including Care Management, support groups, multidisciplinary clinical treatment, equipment loan program and educational and outreach activities from in person experiences to telehealth platforms and strategies in order to ensure safety and increase access to care during this time. Annual community outreach events, which bring together the broad ALS community, including people who have lost loved ones to ALS, generate significant annual revenue for the Chapter’s mission-critical activities, are also being reformatted to celebrate the ways that we can gather virtually and successfully fundraise online, now and throughout the year.
With mission priorities that include patient care, advocacy and research, the current climate has provided the Chapter with a new opportunity to convene ALS clinic directors on a regular basis to develop best practices for multidisciplinary clinical care via telemedicine. ALS clinical care takes place on an outpatient basis and most institutions are currently closed indefinitely for non-emergency outpatient services. It is likely that a telemedicine approach may benefit the ALS community as it will broaden opportunities for people with ALS to access the specialists that they otherwise would be unable to schedule an appointment with for a variety of reasons (lack of insurance coverage, inability to travel, etc.). Additional issues posed by COVID-19 are emerging for this group to address including conducting clinical trials and studying the viability of telemedicine for ALS patients as examples.
As the Chapter learns and develops approaches to better serving the ALS community in this current environment, new mission-critical needs and opportunities will be identified.
2. What additional services, above your standard operations, will be conducted with this grant funding?: The pandemic has completely disrupted the Chapter’s daily operations and has forced the Chapter to address new, unforeseen needs of the ALS community. Due to the nature of the disease, people with ALS are at the greatest risk for the devastating consequences of COVID-19 due to respiratory complications; they are also dependent on caregivers, ALS experts, access to information and community resources, and equipment to maintain health, safety, communication, and quality of life. Thus, the needs of the ALS community have become more acute as a result of COVID-19.
Immediately upon understanding the nature and implications of COVID-19, the Chapter began to share important information online related to preventing individual infection, containing virus spread and addressing the disease progression and treatment needs of people living with ALS. Before the threat of COVID-19, Chapter Care Services and Community Outreach activities were focused on in-person interaction, in a person’s home, physician’s office, clinical care center, medical facility, or event venue. Common meeting places throughout our service area were utilized for support groups, educational programs and community gatherings, as well as for statewide and national advocacy efforts; these in-person programs have been halted because of COVID-19.
Chapter staff are now working remotely and our Care Services programs are converting from in-person experiences to telehealth platforms and strategies. Our annual Community Outreach events, which bring together the broad ALS community and generate significant annual revenue for mission-critical activities, are being reformatted to celebrate the ways that we can gather virtually and successfully fundraise online, now and throughout the year. This shift has led to significant demands to learn about and utilize technology and equipment effectively to bring people together for programmatic purposes.
Funding will be used to support the new ways in which clients in Long Beach access essential care services via telehealth. In addition to current expenses related to existing services, the Chapter anticipates new, unforeseen expenses related to the following:
Technology: to facilitate client interaction with staff, healthcare providers, partners and stakeholders
Supplies/Equipment: COVID protective gear for clients, durable medical equipment and alternative augmentative communication device purchases, repairs, pick-up/delivery, consultations and orientation
Direct Assistance grants to individuals and families who have experienced income reduction/loss of health care related benefits due to job loss.
3. What individuals (and/or organizations) will you assist? Individuals with ALS and their loved ones will benefit from this grant, especially those impacted by health and economic issues related to COVID-19. ALS is a fatal neuromuscular disease that robs a person of the ability to walk, talk, swallow, and to breathe. ALS affects women and men of all ages, ethnicities and socioeconomic backgrounds. For unknown reasons, U.S. military veterans are twice as likely to be diagnosed with ALS than civilians. As with most neurodegenerative diseases, currently there are no effective treatments or cures.
The Chapter’s “Excellence in ALS Care Initiative” is an evidence based wraparound model of care, that combines medical, community and home-based services and support. It is proven to help people with ALS live better and longer than any FDA approved drug and is designed to address the medical, social, emotional and financial challenges of living with ALS by providing a continuum of care that emphasizes coordination and collaboration among expert care managers, social workers, and health care providers. Partner organizations include medical and academic institutions, home health care agencies, hospice, durable medical equipment providers and more.
Today, the Chapter is one the largest ALS patient service organizations in the country, serving nearly 1,900 people with ALS and their loved ones in 31 counties in California and the state of Hawaii; services are provided at no charge.
4. What other disaster recovery funds have you received? What amount?: Silicon Valley Community Foundation: $20,000 for COVID response use in the Bay Area
5. What other disaster recovery funds have you applied for?: SBA loan
Other Community Foundation COVID response funds in California and Hawaii