Expanding Care Services to ALS Patients Through Virtual Outreach

Compassionate Care ALS

Compassionate Care ALS (CCALS) is a nonprofit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease. The organization provides resources including equipment, educational opportunities, insurance and Medicare assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited. CCALS offers an innovative approach to delivering support and services to our clients, which we tailor to the needs of each individual and their support network. Since 2020, CCALS has seen a 45% increase in the number of families we have on our active census.

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that affects the brain and the spinal cord, significantly impacting the quality of life for patients and their caregivers throughout progression. According to the CDC there were nearly 30,000 Americans are living with ALS in 2018.

Following an ALS diagnosis, patients and their caregivers are almost always experiencing a completely new set of emotional, physical, and spiritual challenges. ALS is a disease that will impact nearly every aspect of a person’s life. ALS patients and their caregivers are underserved by the traditional healthcare system, as it simply fails to offer the support that allows them to navigate the difficulties of this disease with dignity. At this critical time, CCALS is able to draw from our experience and offer tailored guidance, a network for emotional support, specialized equipment, transportation, and resources to navigate end-of-life when invited. 

The CDC estimates that 5,000 people are diagnosed with ALS each year, meaning that the demand for our services is constantly increasing. Through the organization Compassionate Care ALS (CCALS), our team lead Ron Hoffman has spent the last 27 years developing the ‘Relational Care Model’, a unique form of ALS care in which individualized emotional and physical support is provided to patients and their families, in their homes, at no cost. We build relationships with those we serve, treating them as individuals with individual needs and wants.  Our work has garnered tremendous response from the ALS community; patient and caregiver testimonials affirm the life changing nature of the care we provide. 

CCALS currently serves more than 1,104 individuals.  Our solution is to leverage technology to bring our innovative approach to an unrestricted geographical area. 

This solution expands the reach of compassionate ALS care. Two specially trained ALS caregivers will provide CCALS care virtually, utilizing platforms such as zoom to connect with patients and caregivers. Virtual ALS care promotes community and connection among patients and their caregivers by introducing them to our vast network of people who have experienced, or are experiencing, the ALS journey from many different perspectives. This solution enables us to directly facilitate daily care management to more people living with ALS than ever before. 

We know our solution is feasible because of our existing presence and impact history within the ALS care community. In addition, during COVID we have direct experience interacting with our ALS families and delivering equipment outside and providing installation instructions virtually.  We have designed this solution with and for the underserved community with which we have come to intimately know and deeply understand. After a CCALS client passes with ALS, we have devised a system to return our major expensive equipment at no cost to our families.  For example, lift purchases have extended their service to multiple families. We offer self-ship boxes to facilitate the return of lifts to us, where they are cleaned and refurbished, and subsequently passed on to other families in need. We allow families to keep the bidets due to hygiene regulations. 

ALS is a terminal disease that can strike anyone, regardless of age, race, gender, or economic status. It causes patients to gradually lose control of the voluntary muscles in their body and progresses differently in each case. Patients often die when they lose the capacity to breathe or swallow, while retaining their ability to see, hear, and comprehend what is happening to them.

Many individuals who have ALS lack adequate health coverage. More than 50% of the 1,104 families CCALS is involved with are reliant on Medicare or Medicaid for their insurance. In addition, they lack community supports to fall back on as their mobility diminishes. For some of our clients, ALS can be isolating. At the same time, family members and friends need knowledge and support to help them help their loved one. The ability to live life is greatly compromised and in order to stay at home for as long as possible many interventions need to occur. The lack of funds of many families makes these interventions cost-prohibitive. 

CCALS has been working with ALS patients, their families and their caregivers since 1998.  We formally became an organization in 2003.  From that time until 2013 the organization consisted of Founder/Executive Director Ron Hoffman driving to visit families. Our growth is evident as we have expanded from a single staff member managing 85 cases and traveling 150,000 miles per year, to a team of 28 staff members overseeing 1,104 cases. As we continue to expand, our goal is to bring innovative care to ALS families in diverse geographic locations where our unique support is currently lacking. We aim to broaden the reach of our services and provide appropriate care to more individuals in need.

We currently have staff in California, New York, New Jersey, New Hampshire, Massachusetts, Colorado, and Florida.  We have clients in all 50 states and and many foreign countries.  As we continue to grow using technology with dedicated Zoom Care Liaisons will help us bring our services to underserved populations in more rural areas and places with ALS patients have less access to support.

The feedback we receive from the families we work with is invaluable in improving and updating our methods. The positive support and acceptance our approach has garnered, along with the appreciation and referrals we receive from major teaching hospitals including the Healy Clinic at MGH and Columbia Presbyterian/Columbia University Medical Center in New York, Penn Comprehensive ALS Center and Temple (University) MDA/ALS Center of Hope, hospices, word of mouth, national ALS organizations like ALS One, Everything ALS, HARK and i am ALS and, due to their new circumstances, former ALS Association state chapters. These collaborative partners’ trust in CCALS serves as evidence of our effectiveness and motivates us to raise funds and awareness to bring our methods to more individuals, especially those isolated from other supports.  

Our solution is innovative because it enables the scalability of our work and increases our potential for impact. There are no other organizations who do what we do the way we do it.  We have trained a large number of people in our relational model and have leveraged our staff and volunteers to assist as many people as we possibly can.  As word of CCALS has traveled we regularly get referrals from major hospitals, healthcare systems, other ALS organizations and many of the leading ALS doctors in the country.   

CCALS is continually looking for ways to positively impact the ALS community.  We hold weekly educational seminars called the Cultivating Compassion Education Series.  These workshops provide assistance to all impacted by ALS.  Topics include Men of ALS, Women of ALS, Caregiver to Caregiver, Mothers of ALS, Beyond ALS, Trauma Gatherings, Sons and Daughters of ALS and many more.  We also provide monthly speaker series that encompass talks by healthcare professionals, and experts in the field with information to pass on to the ALS community.  

Our innovative model of care meeting people where they are often in their homes can translate to a broader community through the use of technology.  We have never had a dedicated staff member who only interacted with families via technology.  We feel this is a sustainable way to continue to increase our presence and to meet our mission.

CCALS is applying because the funding with the prize will allow us to continue to expand our staff.  In addition, we have been greatly impacted by the broader public hearing about our methods.  Our longer-term goal is to expand to serve all those living with neurological diseases and with more people knowing about us, we have more chance to attract the type of funding that will allow us to do that.  

More than 140,000 individuals currently live with the incurable neurological diseases including: Primary Lateral Sclerosis (PLS), Multiple System Atrophy (MSA), Huntington’s Disease and Frontotemporal Dementia (FTD).  Most of these diseases do not discriminate based on age, gender or socioeconomic status. The level of care and experience required to navigate such diseases puts individuals and families in a very vulnerable position that our present healthcare system is currently unprepared to support. Over $350 million is spent annually to fund research on these diseases; a comparatively minuscule amount is spent on care. Research is important in eliminating illness and slowing disease progression but those living with these diseases find a gap between scientific knowledge that medical professionals convey (symptoms and disease progression timeline) and the realities of living with the disease.

CCALS will address this gap in care and education for patients, families, caregivers and healthcare professionals including hospice workers, as we have done in our work with ALS patients since 1998.  In the Conversation Starters focus group study of 736 Primary Care Physicians, fewer than one-third reported formal training on end-of-life discussion with patients/families.  A Kaiser Family Foundation study in 2015 found that “patients/ families increasingly want to talk about end-of-life care with physicians well before facing a terminal illness.” 

Our goal is for each client to understand their individual disease experience by providing them with authentic, compassionate care. Our training aims to fundamentally change the way healthcare professionals approach working with terminal diagnoses. We feel the broader community needs to hear of the work we are doing to enable us to have more impact.

A “proximate leader,” someone who has a meaningful relationship with groups whose identity, experience, or community are systemically stereotyped, feared, dismissed, or marginalized.”

“Leaders who are proximate to the communities and issues they serve have the experience, relationships, data, and knowledge that are essential for developing solutions with measurable and sustainable impact. Importantly, proximate leaders also have the ability to recognize and leverage assets within communities that are often overlooked or misunderstood when viewed through a dominant culture lens.”

Our team lead Ron Hoffman discovered the power of compassionate care through an experience during his childhood in which he survived a gunshot wound. During his time in the hospital as a child of ten along with his mother, a hospital staff member took the extra time and energy to support him in ways that went beyond their job description.  Using that experience as a catalyst, Ron realized the difference between health care and care that attends to the holistic wellbeing of patients and their families. The kindness of the hospital staff member stayed with him to this day. 

Ron’s proximity to the ALS care community began when his employer Gordon T. Heald was diagnosed with ALS in 1997. Ron became his full-time caregiver and throughout this experience, Ron was once again confronted with the realization that the traditional medical system emotionally and spiritually underserves the people they work with. The lack of holistic care for people and their caretakers navigating rare diseases such as ALS was made the need for this type of care immediately evident. After Gordon’s passing, a request for funds in Gordon’s obituary gave Ron the resources he needed to continue working with individuals and families navigating a recent ALS diagnosis. 

In the years since, Ron has dedicated his life to providing holistic, inclusive, compassionate care to the ALS community. The resources needed to live with an ALS diagnosis are immense, and Ron’s work through CCALS ensures that folks have access to care regardless of any factor such as socioeconomic status, race, gender identity, or religion.

Our primary impact goal for the next five years is to increase the scale of the services we provide and affect the lives of more people within our target population. By offering virtual ALS care, we will be able to bring the relational care model and daily care management into the homes of ALS patients and their caregivers. Utilizing technology in this way will help us to provide more inclusive care, as we endeavor to break down geographical, economic, and social barriers which inhibit the access of the holistic care that those living with ALS deserve. We also will continue to pursue opportunities to expand to other neurological diseases under the moniker Compassionate Care America.

The CCALS theory of change developed from a profound event in Founder Ron Hoffman's early life.  In his own words, “It was 1964, I was ten years old. My father was intending to murder my mother in our home, and I instinctively ran to her.  The shot rang out as I was leaping to my mother’s arms and the bullet lodged in my spine. I was taken out of the ambulance on a gurney and being wheeled into the hospital when I felt a hand over my heart. It was a young orderly. He said, “Ronnie, I heard about you on the two-way radio, I've been waiting on you, I am here, you’re going to be OK.”

I have never forgotten this person.  I did not have words for what that experience meant to me until late into adulthood. It was the ultimate act of showing up for another human being. His presence, his calm voice, his ability to see me and witness my situation is something I have never forgotten.  He walked me into the emergency room and then I never saw him again, but his kindness laid out the theory of change for my life’s work.  The art of showing up. 

What I carry with me became ingrained into my model; showing up, the art of language and bearing witness to those suffering with catastrophic illness.  These are the cornerstones of CCALS.  These are skills that our healthcare professionals must remember in order to assist patients in the most compassionate way possible. Simply put, our activities revolve around building relationships with people.  Everything we do stems from these relationships.”

 The CCALS model evokes three levels of positive change: 

A greater number of patients receive support tailored to their circumstance, guidance, and assistance getting the things they need through disease progression.  This results in higher quality of life and better long-term outcomes through end-of-life and the dying process. 

Healthcare providers, including doctors, receive techniques, information and training on how to have difficult conversations with terminal and chronic neurological disease patients 

Families that are under stress due to the uncertainty these diseases bring can find understanding.

26 full-time, 2 part-time

Since 1998

One of the most important aspects of understanding ALS is the experience of being a caregiver for a loved one who is diagnosed with ALS.  Ninety-five percent of our staff have had the experience with a parent, a child, a brother or sister or a friend.  Some of our staff have the experience from a healthcare perspective.  Our leadership team is made up of people who are living with ALS, as well as caregivers and friends of people living with or who have died of ALS. 

We have never turned anyone away from service.  

CCALS exists and is successful in large part because of the financial support of people who have seen the effectiveness of our work.  Our model is to provide spiritual, emotional and physical support free of charge to anyone who needs them.  Our services include educational opportunities, Medicare/Medicaid assistance, psycho-social support, communication assistance, home assessment evaluations and support, our van program, contemplative practice, psycho-social support including developmental trauma, grief and all aspects of human development, equipment, and guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited.  

We focus on providing exceptional care to all who reach out to us.  We could not do the work we do nor maintain the number of staff members we have without the support of our community, and we make sure to provide opportunities to give in every form, or to fundraise on our behalf if individuals cannot support us directly.  We receive over 4,000 donations from individuals a year which provide the bulk of our income and our fundraising is always growing. In addition, we supplement this income with grants, events and other fundraising initiatives.   Our model works because our services are so innovative and in-demand and our community recognizes the need and wants to help.

The majority of our funding comes from individuals. CCALS uses best practices to raise money from our community. Our donor base is diversified, with the majority of our funding coming from individuals. CCALS uses best practices to raise money from our community. We are fortunate to have more than 4,971 individuals donate to us annually  through appeals, events and our participation in the Falmouth Road Race. We also receive support from a number of foundations.  

Other organizations hold our fundraising prowess up as an example of sustainable fundraising.  Most of the funding we receive is unrestricted and thereby utilized for patient service.  Our growth has depended on funds from a wide range of individuals, corporations, and private foundations and we continually work to make them proud of their investment.  Due to the overwhelming need for additional staffing in various regions, CCALS is requesting funds from a number of different sources and looking to expand our staff by four to six members.