The following story is an excerpt from an article that appeared in The Boston Herald, written by Lindsay Kalter on June 15, 2016. Hyde Park native Tony DiIorio, though wheelchair-bound and living with progressive multiple sclerosis, he remains an active 42-year-old man. He attends a weekly cocktail hour, takes painting classes and regularly belts out “Under Pressure” during karaoke.
Just eight months ago, DiIorio was among the hundreds of Bay Staters with disabilities who say they’ve been wrongly placed in elder-care facilities, without the specialized treatment that helps them thrive.
“People like me, with MS, we need to stay active,” said DiIorio, a former car mechanic who was 29 when the right side of his body suddenly gave out. “We need to keep moving physically and moving in our brains to keep going.”
DiIorio is now one of 96 residents at Dorchester’s Boston Home, (one of only a handful) of facilities nationwide — among 16,000 nursing homes — that specialize in progressive neurological diseases. But hundreds of others in Massachusetts, and thousands nationally, remain behind. While his former nursing home insists he received appropriate care, DiIorio said he felt the staff wasn’t able to handle his needs.
DiIorio’s story is a familiar one to advocates for the disabled community and nursing home residents. Boston’s nonprofit Center for Independent Living, which tries to place people outside of nursing homes, reports that about 60 percent of the people who contact the center seeking relocation each year are not the infirm elderly, but younger people with conditions such as traumatic brain injury and progressive chronic illnessses.
“When you build an institution around the worst stereotypes of frail elders that doesn’t even suit a lot of elders, and then try to put younger people with disabilities in as well, that’s going to be a poor fit,” said Nassira Nicola, who supervises the nursing home transition program for the center.
The common image of nursing home residents — people with deteriorating faculties living out their twilight years under 24/7 care — is an outdated one, Nicola said. In April, of the roughly 320 nursing home residents who contacted the center, 195 were between 25 and 59.
“Staff in existing nursing homes need to be aware that the residents they’ll be meeting won’t be the sweet little old lady with dementia,” Nicola said. “But by and large it’s going to be 40- to-50-year-old people with a variety of disabilities who are sort of stuck there and need assistance.”
And many people in that category are too afraid to complain about their caretakers and often stay silent, said Christine Griffin, executive director of the Disability Law Center of Massachusetts. She said only about 25 people a year call her center to seek help, but nearly all of them fall into the category of under 60 and disabled.
“I think people are too afraid to complain. You’re complaining about the very place and people taking care of you,” Griffin said. “You fear retaliation.”
Many advocates prefer people with disabilities to remain out in the community and receive care while at home, to maintain some semblance of independence. But if that isn’t possible, a place like the Boston Home is ideal, said Linda Guiod of the National Multiple Sclerosis Society’s New England chapter.
“It’s a very special population that requires a different approach to long-term care to what you see in a traditional nursing home,” Guiod said.
For DiIorio and other Boston Home residents, it has been a life-changer.
“I get out now, get fresh air in the garden, go see concerts,” DiIorio said. “It gives people like me a life.”