Providing compassion to ALS patients
Jeff Robbins Tuesday, November 27, 2018
GOOD WORK: Ron Hoffman, founded Compassionate Care ALS, which helps those with ALS and their families.
Ron Hoffman spent the day before Thanksgiving like he spends most days: driving long distances between his Falmouth home and communities across New England, visiting those suffering from ALS to see what they may need and how the non-profit he founded in 2001 can help them.
Last Wednesday’s drive was five hours round-trip, “visiting a couple of families,” as he put it. “I haven’t seen them in a bit,” he says. “Just checking in to see how they are doing.”
Hoffman does a whole lot of “checking in,” and a whole lot of care-giving in a whole lot of places. He recently — and reluctantly — traded in his car with 398,000 miles on it, racked up assessing what ALS families needed and then orchestrating a way to provide it.
For thousands of ALS patients to whom Hoffman and his organization, Compassionate Care ALS, have provided vital help, CCALS is a sort of SWAT team of visiting angels.
Funded entirely by private donations, CCALS goes into patients’ homes, listens to them, and rapidly finds a way to supply them with equipment and services that they need to make basic mobility, personal hygiene and communication possible, lock in insurance coverage and provide vital emotional support. When Berkshire County chef Mike Ballon was stricken with ALS last year, someone from Massachusetts General Hospital told him about Hoffman. “They asked, ‘Do you want to meet this guy?’” Ballon recalls. CCALS immediately dispatched health care specialist Jean Batty to Ballon’s house to take charge of his insurance coverage, a complicated and stressful matter for ALS patients. “She essentially took over my case,” says Ballon.
As his disease has progressed, taking his mobility, CCALS has made it its business to get Ballon the equipment he requires to maintain minimal functionality. “Over the last year, CCALS has made sure that I had first a walker, then a ramp and now a motorized wheelchair,” Ballon says. “All were provided free of charge.” CCALS is there for him, as it is for over 600 patients at any given time.
“Whenever you call them and say, ‘I think I may need this piece of equipment,” says Ballon, “they say, ‘Oh, we have one, let us ship it to you.’ ”
For Ballon, the owner for 30 years of the Castle Street Cafe in Great Barrington, a community fixture for good food and social causes, ALS has heaped cruel irony on top of just plain cruelty. His wife works long days as a teacher and he is alone all day, now confined to his wheelchair. He is thoroughly disabled, and as he is effectively unable to prepare his own meals, he has signed up for the Meals on Wheels program. The irony is that for decades Ballon provided countless free meals for battered women and homeless shelters throughout the Berkshires. “Now I am on the receiving end,” he says.
CCALS has mastered the art of “deep listening” to ALS families, and then hurling itself into action. Its hallmark is not merely rapid response, but smart and sensitive anticipation of the immediate, mid-range and long-term needs of ALS sufferers and their loved ones.
“I have a lot of great people,” says the 65-year-old Hoffman about his team of social workers, health care experts and delivery people. They are scheduled to open a retreat center on Cape Cod this spring, designed to offer respite of various kinds to patients and their families.
“It is all about direct impact on the quality of life,” says Hoffman, a personal tour de force of both kindness and effectiveness.
“The word ‘compassionate’ in CCALS’ name is well-chosen,” Ballon says.
In a season of Thanksgiving, there are many who, like Mike Ballon, are thankful for Hoffman and his group, who have meant so much to individuals who have found themselves forced to cope with a profoundly raw, unfair deal.
Jeff Robbins is a Boston lawyer and former U.S. delegate to the United Nations Human Rights Commission.