Compassionate Care ALS Inc

Since 2017 CCALS has partnered with Massachusetts General Hospital’s (MGH’s) Healy Center for ALS 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 allows us the ability to introduce our families to the latest research and clinical trials going on at MGH. This initiative is being led by Dr. Merit Cudkowicz, Chief of the Department of Neurology at MGH and CCALS’ Founder/Executive Director Ron Hoffman.

Our Cultivating Compassion Education Series shares with others the knowledge that we have gained caring for and supporting individuals living with ALS, their families and their communities. Cultivating Compassion helps to improve effective communication among individuals living with ALS, families and healthcare professionals, while shedding light on the realities of living with and dying of ALS. The gatherings and workshops offer a myriad of ideas about caregiving immersed in an experience of connection, belonging and common ground. The Cultivating Compassion Education Series is designed to provide an honest, open and accepting forum in which to explore various aspects of the ALS experience for everyone involved. Our talented staff will facilitate the discussion and make sure everyone’s voice is heard and respected. At times, experiential exercises will be offered to support participants in connecting deeply with themselves and their peers in a genuine encounter with heart and soul.

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.