Compassionate Care ALS Inc

West Falmouth, MA   |  http://ccals.org

Mission

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, Medicare/Medicaid assistance, communication 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.

Ruling year info

2002

Founder/Executive Director

Mr. Ronald Hoffman

Main address

PO Box 1052

West Falmouth, MA 02574 USA

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EIN

04-3567819

NTEE code info

Diseases of Specific Organs (G40)

Human Service Organizations (P20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

ALS, also known as Lou Gehrig’s disease, is a terminal disease. ALS can strike anyone, regardless of age, race, gender, or economic status. As a degenerative and fatal neuromuscular disease, it causes patients to gradually lose control of the voluntary muscles in their body. Some individuals end up requiring intensive 24-hour care. The disease progresses differently in each case, and patients often die when they lose the capacity to breathe or swallow, most often while retaining their ability to see, hear, and comprehend what is happening to them. CCALS is proud to provide individualized assistance to each client and their families though our programming. Our goal for each and every on of our clients is to underunderstand their individual experiences and struggles with ALS, and provide them with authentic and considerate service. We also work with family members to help them navigate the difficult circumstance of a family member living and dying with ALS.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

ALS Patient, Family and Caregiver Support Program

Key services include:
• Home Assessments: CCALS staff members make multiple and ongoing home visits. We meet the family in their home environment to evaluate the accessibility of the living space at different stages of the disease and assess how else we can best support the individual. Our staff average 87 home visits a month to assess and deliver equipment and consult with families.
• Equipment for the Home: CCALS helps provide critical equipment for those living with ALS. These durable goods include power wheelchairs, vertical lifts, stair lifts, bath chairs, portable ramps and ramp sytems. This equipment allows individuals diagnosed with ALS and their caregiver(s), often their spouse, to maintain a higher quality of life in face of this degenerative disease. We have an inventory of ramp supplies both donated and purchased. We are allowed to store them with one of our vendors through a strategic partnership. We sometimes pay for ramp installations and regularly pay for ramp rentals to assure that ALS patients have full accessibility.
• One-on-One Guidance: CCALS provides one-on-one consultations to discuss disease progression, living with ALS, death and dying, and coping with a family member’s death. We offer in depth Medicare and Medicaid assistance and our staff is always available for impromptu communication and phone consultations.
• Referrals: CCALS staff members regularly make referrals to local hospice and ALS providers, integrative therapy practitioners such as trauma and grief counselors, as well as other specialists. CCALS and Massachusetts General Hospitals’ Healy ALS Clinic (MGH) have developed a release form that allows the two organizations to share information about ALS patients we have in common. We currently work with 200 mutual release patients and in 2018 we received 129 referrals from MGH. Having this agreement in place assists our ability to address needs of ALS patients and their families. Having a signed release form increases both communication with the hospital and our ability to collaborate with and help the staff at MGH track progression of the families we work with. All of this is in addition to individual organizational work with families.
• ALS House Calls Program:
CCALS has partnered with Massachusetts General Hospital’s (MGH’s) ALS Clinic on The ALS House Call Program which gives homebound ALS patients of all socioeconomic situations access to medical services in the home. CCALS and MGH bring high quality and patient-centered care to ALS patients in their own homes. The exciting partnership is being led by Dr. Merit Cudkowicz, Chief of the Department of Neurology at MGH and CCALS’ Founder/Executive Director Ron Hoffman.
• The Heald Center, Education, Retreat, Sanctuary
CCALS has recently opened our retreat center where CCALS patients, families and other caregivers come for respite. We also have begun holding Cultivating Compassion Workshops at the site.

Population(s) Served

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our organizational objectives are to:
● Provide services to more than 300 new ALS families annually.
● Conduct over 800 visits to people living with ALS and their families at home to provide guidance and emotional support, to assess their current circumstance and to deliver equipment.
● Provide more than 1,100 phone consultations with ALS patients, families and friends.
● Continue to provide referrals and subsidize those living with ALS to specialists who provide necessary services outside of our scope.
● Provide over $500,000 worth of durable goods, including, but not limited to; ramps, wheelchairs, shower chairs, lifts, and other durable goods not covered by insurance or provided by other organizations.
● Subsidize respite services and durable goods and equipment that we cannot provide for free.
● Provide over 10 workshops through the Cultivating Compassion Workshop Series.

We currently have a staff of 12 individuals. In addition to our founder Ron Hoffman, we have two senior care liaisons, which include a licensed social worker. We have a full-time Equipment Program staff member who delivers, installs and repairs equipment and orients families on equipment use. We have an Augmentative Services Manager who works directly with patients primarily on communication. We also have a Government Affairs Liaison who works directly with ALS patients on Medicaid/Mass Health issues. Our five program staff members share administrative duties, family visits, follow up, check-ins and equipment pick up and drop offs.

CCALS has more than 20 years of direct experience working with ALS patient, their families and their caregivers. The majority of our staff have been directly impacted by ALS in their own family or community. We are highly regarding and receive referrals from major medical institutions all over the country.

Since 1998, CCALS has developed an incredibly supportive community that has allowed us to continuously fulfill our mission through donations, in-kind gifts and leveraging their contacts. We have support from a number of venues and the fundraising techniques we utilize are cutting edge. Funds from individuals, corporations and private foundations have allowed us to continue to expand to meet the growing need. In addition, our partnerships with major hospitals have brought us a higher profile. Our staff and board are proud of our accomplishments and the people we have assisted. We look to continually add staff to keep up with the demand for our services.

Financials

Compassionate Care ALS Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Compassionate Care ALS Inc

Board of directors
as of 3/24/2020
SOURCE: Self-reported by organization
Board chair

Mr. James Bruce