Debbie Schichtman says Miriam Home and Services is taking away her sister's reason to get up in the morning.
Miriam Home and Services provides a range of services for English-speaking children, teens and adults with intellectual disabilities and autism spectrum disorders.
For years, Schichtman's 57-year-old sister has gone to the agency's specialized day program, designed for adults with profound disabilities.
The activities and outings have given her sister a chance to socialize, learn and integrate, Schichtman says — and most importantly, it's given her a sense of belonging.
'We all deserve to have a purpose.' - Debbie Schichtman, whose 57-year-old sister is profoundly disabled
"We all deserve to have a purpose," said Schichtman.
But in a move that caught Schichtman and other families completely off guard, Miriam Home announced sweeping changes to its services earlier this month.
To help reduce Miriam's waiting list, clients who are 55 years and older, including Schichtman's sister, will be excluded from the program.
"My jaw just dropped," said Schichtman, who is also president of the Miriam Home's users' committee. "I was horrified."
Under the changes, clients between 50 and 54 years of age will only be able to attend the day program part-time. Days will also be reduced for clients with absentee or severe fatigue issues.
Anyone who lives in one of Miriam Home's network of group homes will only get basic stimulation and leisure activities in the home.
The changes will start next month.
"It's literally, a flick of a switch and poof — everyone is gone," said Schichtman.
Changes hit most vulnerable
The Miriam Home and Services day program was open to adults 21 years of age and over and run out of the Lori Black Community Centre in the Town of Mount Royal.
In 2015, the reorganization of health services in the province meant Miriam became part of the CIUSSS West-Central Montreal, the health and social services authority which covers the Montreal's west end.
In a letter CBC Montreal obtained, Miriam Home told families and group home managers, "a client must have the potential for learning new skills that will impact their daily life" to benefit from its rehabilitation services.
'This is a cut to the most vulnerable, the most marginalized, the ones no one sees.' - Electra Dalamagas of Autisme Montréal
Miriam Home says this new focus is a change from the previous model, which focused on maintaining abilities and providing basic stimulation and leisure activities.
The new program will prioritize adults who live at home and are transitioning from school to rehabilitation services.
Autisme Montreal, which advocates for families of children and adults with autism, says the planned changes have caused an uproar.
"This is a cut to the most vulnerable, the most marginalized, the ones no one sees in society," said Electra Dalamagas, who speaks for Autisme Montréal.
Many of the clients who currently go to the day program also have physical handicaps or serious behavioural problems that demand one-on-one help. Dalamagas says it's offensive to think that older adults don't have the capacity to learn.
"A lot of families are feeling very betrayed," said Dalamagas. "This is a form of abandonment. We are talking about individuals who can't get services in the community otherwise.".
Like 'house arrest'
The CIUSSS West-Central Montreal, which oversees Miriam, says the decision to "readjust" who gets services was based on a "revision of the needs of our aging population."
Spokesperson Emmanuelle Paciullo says CIUSSS representatives will meet families to discuss other activities and programs offered in the community based on their loved one's needs.
A recreational therapist will also give group home managers training to develop leisure activities in the home.
"Rest assured that during this period of change, Miriam Home and Services will ensure a smooth transition," Paciullo said in a statement. "Clients will experience no loss of services."
Schichtman says that's simply not true.
She says Miriam is targeting vulnerable adults who often don't have family to advocate on their behalf.
"Who is acting in the best interest of the client?" asks Schichtman. "If they don't have a representative or are under public curatorship, any way the wind blows, they just blow with the wind."
Schichtman says the demand for Miriam Home's specialized day program is overwhelming because similar services don't exist elsewhere in the community.
"The government has to loosen the purse strings and give the funding that's needed," she said.
Dumping the responsibility onto group home managers isn't the answer, she said.
They already have a hard time finding qualified staff who can take care of clients with a myriad of physical, behavioural and cognitive issues.
Besides, she said, you can't control what home managers do in terms of activities.
"I think this will be house arrest, basically," said Schichtman. "This is your life. This is where you sleep, eat and spend the rest of your days."
Community groups expected to pitch in
One of the community groups Miriam Home contacted to see if it could pitch in to help is Blue Light, an program for adults with intellectual disabilities, based in Kirkland.
It was started by Rino Varricchio, himself a group home manager.
He saw how few services there were for these adults and decided to start his own non-profit organization.
So far, he has three clients, all high-functioning. They go swimming, do crafts and puzzles, and they've started a recycling program.
He'd like to expand it to include lower-functioning adults, as well.
"We don't want them to be in their little cocoon. We want them out and about," said Varricchio. "With that, you also need manpower, the right staffing and equipment."
Although getting some clients from Miriam Home will help them expand, he said he's sad and frustrated to see the rehabilitation centre cutting services.
"We need more programs like this," said Varricchio. "It provides them with a better way of life and makes them happier at the end of day."
Without an outlet like the day program, Dalamagas says it can create incredible stress for both the client and the group home manager.
"Their whole world is turned upside down by not having a routine on a daily basis," said Dalamagas.
Miriam Home will be meeting with Schichtman and other members of the users' committee on Tuesday.
Autisme Montreal and other advocacy groups will also be present.
They've also written to Health Minister Gaétan Barrette and Public Health Minister Lucie Charlebois demanding a halt to the planned changes.
After years of being there for the most vulnerable, Schichtman says the managers of Miriam Home and Services have to speak up and tell the government the agency can't keep cutting.
"This can't be railroaded off to community organizations," said Schichtman.
CBC Montreal did contact the Ministry of Health and Social Services.
A spokesperson declined to comment on the changes.