Families and advocates for the intellectually disabled who are served by the Miriam Home are calling on the Quebec government not to cut services to “the most vulnerable” adults.
On Feb. 5, the users’ committee of Miriam, along with local advocates for the disabled, submitted a petition with about 2,700 signatures to the national assembly.
They are demanding that a plan be abandoned that would exclude certain clients from a specialized day program, including some of the more severely disabled people, such as those with autism spectrum disorder who are over age 21 and are living in group homes under Miriam’s aegis.
The users’ committee says that 123 people face losing a community connection that helps them maintain their social skills and enhances their quality of life.
The government is pressing Miriam to redirect resources to less disabled people who may derive more benefit from them. Miriam serves the Jewish community and all anglophones within its territory.
In response to grassroots opposition, the regional health body that administers Miriam has put the plan on hold, but the petitioners are not assuaged.
The controversy has been roiling since Nov. 3, when users were sent a letter by managers of Miriam’s Community Integration Program (CIP), to notify them of “changes” that were instituted by West-Central Montreal Health (CIUSSS).
“To benefit from rehabilitation services, a client must have the potential for learning new skills that will impact their life,” the letter reads. “This is a change from the previous model, whereby the focus was on maintaining abilities, basic stimulation and leisure activities.”
Under the new system CIP, which is run out of the Lori Black Community Centre, would have been forced to focus on those who are still living at home and “transitioning from school to rehabilitation services.”
Others would receive “basic stimulation and leisure” in their group home, led by a recreational therapist who will train home managers and find “community partners” to make up for the day program.
The families say that therapist would be responsible for the more than 60 group homes and that it’s unrealistic to think that overtaxed home managers can take on the extra responsibilities.
In addition to group home residents, all clients over 55 would have become ineligible, with those between 50 and 55 continuing part time.
Our goal is to offer services that cater to the client’s individual needs.
– Félicia Guarna
The uproar over the news was exacerbated when CIUSSS associate CEO Francine Dupuis sent the committee an email saying that “it’s our duty to optimize the use of resources” and faulted Miriam for mismanaging the day program for years.
As she bluntly put it: “People in real need of a rehab program were left on a waiting list, while the ones on ‘maintenance’ were using our professional resources without any hope of improvement.” As many as 200 are waiting, she said.
In a Nov. 15 letter, CIUSSS director of rehabilitation Félicia Guarna reassured stakeholders that services “will be reorganized but no services will be abolished,” and that changes will be gradual.
“Our goal is to offer services that cater to the client’s individual needs, within a service trajectory, where the activity will be offered by the most appropriate resource at the right time,” she wrote.
The users’ committee remained unconvinced, calling the decision “dehumanizing,” discriminatory and arbitrary, because no clinical evaluation had been made and the families had not been consulted. They launched a Facebook page called “We are human too!”
Committee member Electra Dalamagas said that deeming the profoundly disabled unworthy of publicly funded services of this kind runs counter to clinical evidence and gains made in the rights of the disabled over the past 40 or 50 years.
“The pressure is coming from higher up – from the Ministry of Health and Social Services,” she said. “All of the centres like Miriam are being forced to address their waiting lists. We are not against that; what we are saying is don’t sacrifice the most vulnerable to do so. Ultimately, government has to provide the funding to service everyone, especially those with the greatest need.”
The pressure is coming from higher up.
– Electra Dalamagas
To offload the responsibility to the community sector is unrealistic, she believes, as there are no alternatives for these people, who often also have physical and behavioural issues.
It’s also shortsighted, she said. Without the structure and support of CIP, their condition will deteriorate quickly and the health system will have to intervene elsewhere.
As opponents continued to speak out, Guarna followed up with a second letter on Dec. 20, apologizing and announcing a “halt (to) our initial plans.”
In the coming weeks, two “work groups” are to be formed, composed of senior management of the CIUSSS and Miriam’s Advisory Committee, and of community representatives and the families of users, to review services to all clients.
“These groups will recommend the methods and processes by which customized service plans can be accomplished,” Guarna stated.
“After these steps have been completed, the clients and families of Miriam will be informed, advised and consulted on the specific plans and recommendations for personalized service and care.”
Dalamagas said that users’ committee representatives had not yet been invited to join the group.
“The halt is only temporary,” Dalamagas reiterated. “There is no guarantee we will not lose services in the future.”