ALS Patient, Family, and Caregiver Support Program

According to the CDC, fewer than 20,000 people in the United States have Amyotrophic Lateral Sclerosis (ALS) at any one time with an additional 5,000 being diagnosed each year.  (FAQs | Amyotrophic Lateral Sclerosis (ALS) | CDC).  According to global estimates, around four to six people per 100,000 are living with ALS at any one time (ALS Incidence and Prevalence Worldwide - Alstreatment.com). Following an ALS diagnosis, the traditional medical system fails to provide the practical assistance as well as the emotional and spiritual guidance necessary to live the remainder of one’s life with dignity and comfort. There are very few organizations that offer the resources around care for each individual involved in an ALS diagnosis, beyond just the person diagnosed with ALS. CCALS fills the gap where traditional medicine and  research organizations fail. 

Our solution is to use proven technology to support ALS patients through a devastating terminal diagnosis. Our staff have decades of experience assisting ALS patients, their families, friends and caregivers through all stages of the disease. By adapting to utilize regularly available communication technologies such as zoom, facetime, etc. we have extended the number of ALS families we are able to impact.   

Traditionally, CCALS staff members make home visits to ALS patients at regular intervals.  Beginning in March of 2020 we transitioned to a fully remote model and have alternated between that and a hybrid model for the past two and a half years depending on COVID-19 numbers.  We currently pair in-person home visits with similar support via phone or video call to reduce chance of COVID-19 transmission and to allow us to visit more families, in more places than we could be physically visiting them all.  

In these visits both remotely and in person, we evaluate the accessibility of the living space and assess how we can best support the individual via home visit with proper PPE and protocol, or we do the walk through of the home via Zoom or on Facetime.  Our staff average over 120 home and virtual visits a month to assess and deliver equipment and consult with families. This is in addition to the hundreds of phone consultations we have during the course of a month.   

Especially during lockdowns our ability to utilize communication technology to continue our much needed services.  In addition, we employ a Communication Director, who is an expert in augmentative communication devices such as the Tobii.  These devices allow individuals who have lost the ability to speak, and who have sometimes lost the use of their arms and hands, to continue to communicate via a head pointer and an ipad.

 CCALS primary services include 

1. Home Assessments discussed above,

2. Equipment: CCALS provides critical equipment for those living with ALS. These durable goods include power wheelchairs, electric toilet lift seats with bidet/washlet, vertical lifts, stair lifts, bath chairs, portable ramps and ramp systems, in addition to a myriad of other items. This equipment allows individuals diagnosed with ALS and their caregiver(s), often their spouse, to maintain a higher quality of life.  We have an inventory of ramp supplies, chair lifts and vertical lifts, both donated and purchased.  We store them with one of our vendors through a strategic partnership. We regularly pay for ramp installations and ramp rentals to assure that ALS patients have full accessibility.

3. One-on-One Guidance: CCALS staff provide one-on-one consultations to discuss disease progression, living with ALS, and when invited, death and dying, and coping with a family member’s passing. We are able to tap into our wide breadth of knowledge to address each aspect of the ALS experience. We honor each individual where they are. We offer in-depth assistance around the many complexities families face and our staff is always available for impromptu communication and phone consultations.

4. Referrals: CCALS staff members regularly make referrals to CCALS local partners which include hospice and ALS providers, integrative therapy practitioners such as trauma and grief counselors, as well as other specialists. CCALS and Massachusetts General Hospitals (MGH) Healy ALS Clinic have developed a release form that allows the two organizations to share information about ALS patients we have in common, so we can streamline channels of communication which allows us to better understand patient needs and offer better support.

5. We currently work with 200 mutual release patients and we received 195 referrals from MGH in 2021. Having this agreement in place assists our ability to address the needs of ALS patients and their families.  The signed release form increases both communication with the hospital and our ability to collaborate with and help the staff at MGH track progression of our mutual families. All of this is in addition to individual organizational work with families. In New York we have a similar relationship with Columbia Presbyterian/Columbia University Medical Center.

Our solution serves people diagnosed with ALS, their families, healthcare providers, and communities. CCALS support has a profound impact on the lives of those who utilize our services. The experience of 18 full-time staff members working for many years with all types of ALS means that someone on our staff is prepared for any situation presented. We have seen ALS impact individuals in many different ways and we know each family and ALS patient will receive our services differently.  Some individuals are extremely receptive to our full range of offerings, and others only want a specific aspect of care. The guidance, expertise, and state of the art equipment we bring to homes during family visits can transform the day-to-day experience of someone living with ALS; the right equipment means they may be able to move about their home, shower, or sit with their family in the living room, perhaps for the first time in months. 

While many research organizations exist, a very small percentage of nonprofit organizations focus on care for both ALS patients, their caregivers and their broader community.  The expertise, experience and know-how that CCALS has in the realm of care for ALS patients, their families and their caregivers is both unique and extremely innovative. We anticipate adding staff in locations where there is a calling for our work.  Locations we have targeted are the Carolinas, Georgia, Pennsylvania, Florida, California and additional staff and support in Massachusetts and the rest of New England. We already spend a portion of our limited resources serving people in these locations. Many find us and request services from our Massachusetts-based organization because they cannot find appropriate support in their location.  There are some national organizations like the ALS Association and Team Gleason that offer aspects of what we do, but there is no one organization that provides the comprehensive services that CCALS does to as many families in as many locations.  By utilizing technology we have expanded our reach, but we also need additional trained staff to keep up with the ongoing, growing demand for our services. 

When Executive Director, Ron Hoffman began working with families, the great need for the services he provided became apparent resulting in the creation of Compassionate Care ALS.  The experiences Ron has and the knowledge he and his staff have gained by working with more than 3,500 ALS patients and families over 23 years is invaluable.  As we have grown, staff have come to us from other major ALS organizations, joining our staff because “no one does what we do the way we do it.” We hear similar stories from our ALS clients, who share accounts of how their quality of life improved after meeting with CCALS staff and whose families remain involved with our organization volunteering, donating, or attending events for years after their loved ones have passed.

CCALS support has a profound impact on the lives of those who utilize our services. The experience of 19 full-time staff members working for many years with the many different circumstances ALS patients and families face, means that someone on staff is prepared for any situation presented. We have seen ALS impact individuals in a variety of ways and we know each family and ALS patient will receive our services differently.  Some individuals are extremely receptive to our full range of offerings, and others only want a specific aspect of care. The guidance, expertise, and state of the art equipment we introduce to families can transform the day-to-day experience of someone living with ALS; the right equipment means they may be able to move about their home, shower, or sit with their family in the living room, perhaps for the first time in months.

This quote from one of our families who recently stayed at our retreat center demonstrates what we can bring to families: 

Our stay at the Heald Center brought a sense of peace and possibility. We are not alone. Others are there to teach, listen, and support. I realize that we have only scratched the surface of this relationship. Together, we will grow in spirit, sadly decline, and ultimately become resilient in our kinship. Most of all, there will be laughter and a certain joy within this journey.

Success for our organization will be reflected by the additional individuals and families we are able to serve. Our goal for this project is to expand the ability of our staff to support every individual with ALS, meeting them where they are in both disease progression and acceptance of their circumstances. An additional measure of success would be to reduce our current staff caseloads, since each staff member currently manages more than twice the national average of cases due to the number of referrals we received the last two years.

The majority of the families we work with offer really positive, helpful feedback that allows us to continuously update and improve our methods.  The support our work has garnered and acceptance, appreciation and referrals we get from major teaching hospitals, ALS clinics, hospices and national ALS organizations is a testament to our effectiveness. The ability to bring our resources to additional families living with this fatal degenerative disease is a great measure of success for this project.

 In addition, CCALS developed a Volunteer Caregiver Program (VCP) last year to provide ongoing training to current and former caregivers and family members of ALS patients. VCP incorporates CCALS developed training sessions as well as our ongoing workshops series, Cultivating Compassion. These two components inform and educate participants on ALS care and allow participants to serve as a source of awareness, understanding, and consistency to those living and dying with a disease that has no effective treatment or cure. They learn how to support individuals living with a terminal diagnosis and are equipped with the tools and knowledge to enhance quality of life for the individual and family living with ALS. After completion of training, individuals are able to participate as CCALS Volunteer Caregivers to assist our staff in support of current CCALS families.  To date 23 individuals have been trained.  This allows us to stay connected to the community we are serving, having them advise us on what worked for them.

We are applying for this challenge because we want to bring CCALS quality care to families who need it, regardless of location. The primary barrier faced by CCALS at this time is our organizational capacity. Throughout the pandemic we have continued to grow and discover the need for our services in additional locations. As resources become available, we are undertaking controlled expansion to bring ALS care services to targeted communities across the country. CCALS currently has a relationship with 5.5% of individuals living with ALS in the United States at any given time. We have grown from our founder traveling 150,000 miles a year managing 85 cases, to a staff of 19 managing 864 cases in 42 states and other countries. Additional expansion, utilizing communication technology, will bring innovative care to ALS families in more diverse geographic locations where they do not have the type of support that CCALS offers. Geographic diversification of our client base and staff is important to ensure that we are able to provide more people in need of assistance with appropriate care.

Current CCALS employees are located in Massachusetts, New Hampshire, New York, New Jersey, Texas and Colorado. Our hiring plan will add staff in states where we do not currently have the capacity to serve.  It will also expand our team at our headquarters in Massachusetts. Hiring staff on the ground in new states will help CCALS develop relationships and local referral networks, so that our ALS families will have more access to and knowledge of local services available to them. The decrease in travel and communication costs to and from these states will allow us to provide more resources to individuals with ALS, like equipment not covered by insurance.

The majority of the families we work with offer really positive, helpful feedback that allows us to continuously update and improve our methods.  The support our methods have garnered and acceptance, appreciation and referrals we get from major teaching hospitals, hospices and national ALS organizations is a testament to our effectiveness. The ability to bring our resources to additional families living with this fatal degenerative disease is a great measure of success for this project.

Goal #1: Providing positive outcomes to those living with ALS

Outcome: Improvement in emotional and mental well-being

Goal #2: Provide relief and support to families and caregivers of ALS patients

Outcome: Provide ongoing support to all families requesting it through regular meetings both remote and in person.

Goal #3: Increase Compassionate Care ALS' organizational capacity through technology,  increased staffing and the use of volunteers

Outcome: CCALS increases the total number of families served and the time spent with each family  

Goal #1 Measure: Surveys of wellness conducted at 6 month intervals

Goal #2 Measure: Number of families served

Goal #3 Measure: Number of home visits and remote visits. 

The CCALS theory of change developed by Executive Director Ron Hoffman, was based on his early experience both in life and with working with ALS patients.  We define it as the ultimate act of showing up for another human being. Having presence, calm and ability to see people as they are and witness their situation is profund.  The art of showing up. 

The model is of 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 model evokes three levels of positive change: 

1. 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. 

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

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

The core technologies that power our solution consist of various existing communication platforms.

While not ethnically diverse our board consist of individuals who have been directly impacted by ALS.  Family members, friends, ALS patients and healthcare providers make up our board.  In addition, we have a board of advisors made up of individuals in the community who are committed to our mission.  

Our model is based in best practices and it is to serve as many people as possible with the highest quality of care available.

CCALS is sustainable.  Our biggest challenge is meeting the need nationally for our services. The majority of our funding comes 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.  Our experience demonstrates that moving into new regions will also allow us to cultivate additional donors in that region. We are a Charity Navigator Four Star Charity and have received the Guidestar Gold Seal of Transparency.   Our growth is based on our ability to raise enough funding to support expansion.  As our board is comfortable with our funding position, we hire new staff.  Our growth has always been controlled. 

We have had an anonymous $1 million contribution that provided us stability.  It was received in February of 2020.  We have also continually receive a number of six figure donations from individuals and family foundations, which sustain us along with the many donations we receive from individuals each year.  We are a founding member of ALS One which provides us with grant funding over the course of each year.   We are continually searching for new ways to fundraise that resonate with our constituents.  We also research new potential grantors who would be a fit.  Our outreach methods to individuals work to gain new donor names as well as retain current donors.