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Petition aims to improve support for caregivers

Update: Since its launch on February 14th, 2018, Sal Amenta’s petition has more than 16,000 names! Consider signing the petition by clicking here.

The Stouffville father of a 34-year-old son who has an intellectual disability has just launched a petition asking that the Federal government stop taking caregivers for granted and provide them with the supports they need to take better care of their loved ones who are ill or have a disability.

Salvatore Amenta believes that by doing so, Canada will not only be able to deserve its reputation as a compassionate society, but also live up to its promise to uphold the 2010 UN Convention on the Rights of Persons with Disabilities.

The Convention has an Optional Protocol attached to it, which further safeguards these rights by giving people and organizations access to a UN committee for complaints against a signing country if it fails to uphold these rights after all domestic remedies fail. Amenta launched a petition two years ago asking Ottawa to adopt the Protocol, and the petition has garnered 27,200 signatures to date.

But while the Convention was ratified by Canada, the Protocol is yet to be adopted, even though the Federal government promised two years ago to do this by the end of 2017. In fact, last December 3rd, it announced that a motion to adopt the Protocol would be acted on in 21 sitting days. Unfortunately, that time has come and gone. In fact, Amenta learned this week that the provinces and territories, which must give unanimous consent for accession to take place, need more time, perhaps months, to respond to the motion.

Amenta said he was puzzled by the need for so much consultation on the Protocol, since the document simply holds Canada accountable for fulfilling the promise it made in signing the convention in 2010. So why, he asked, should the provinces and territories need to be consulted on whether they intend to uphold the convention they signed eight years ago?

In fact, he was so disturbed by this development that he wrote a letter to the Honourable Jean-Yves Duclos, in charge of the newly-formed Ministry of Families, Children and Social Development, that he has started another petition on a new cause that is dear to his heart: caregiver support.

The petition highlights the plight of approximately 10 million caregivers nationwide (Statistics Canada reported there were 8 million in 2014) who pour so much of themselves into supporting family members dependent on them because of their disability, illness or frailty.

Amenta agrees with the Canadian Association for Retired People, who found that support services across Canada are inconsistent and often inadequate. This leads to emotional, financial, and physical pressures that can become intolerable for caregivers.

“As a last resort,” he said, “many families turn to each other for help, but this becomes another weight on their shoulders as they struggle to keep their heads above water.”

He argues that the country can afford to provide the desperately-needed supports, because the value of the eight million informal caregivers’ unpaid work was $25 billion per year in 2014 — not counting the savings from caring for people at home and in their community, rather than in institutions.

“That is why we are asking you to throw caregivers a lifeline so they stay afloat in turbulent waters,” Amenta wrote in his letter to Duclos on Thursday morning.  “As Minister of Families, Children and Social Development, you can make caregiver support a top priority for your ministry, and make it a central part of your plan for Canada’s future.”

He goes on to say that “With an aging population and more of us joining what the CBC calls ‘The Caregivers Club’, your ministry is uniquely positioned to lighten families’ emotional, physical, and financial burdens.”

Amenta knows firsthand how caregivers struggle due to the challenges he, his wife and siblings faced in tending to their chronically and terminally ill parents, as well as their son, JP, who has a mild intellectual disability and went through school as a special-needs student.

Though a high-functioning and hard-working employee, their son still needs some accommodation by an employer in order to function at his best. He continues to be a great source of concern to his parents who must plan for his future even though he is an adult.

Yet Amenta’s son is nowhere near as dependent as many other adults who have an intellectual disability, and his father has met many of their parents through his work with a local family support network he helped start in York Region.

In that network, he met many families who were struggling to find needed supports for their dependent adult children who were languishing on long waitlists for badly-needed services. He saw families fall apart due to the constant stress they faced in advocating for their children while dealing with cumbersome medical, legal, and educational systems. Virtually all of the parents he met were anxious about what would happen to their children when they were no longer there for them.

The challenges are draining on the caregivers, said Amenta, many of whom tend to be taken for granted. He added it is too easy to ignore these unseen and unsung heroes as they succumb to ‘caretaker burnout’ or drown in despair. That is why Amenta, who retired from teaching in 2002, became a feisty family advocate.

“It’s a personal effort on my part,” he concluded, “to speak on behalf of those who do not have time to speak for themselves, because they’re so busy looking after their loved ones.”

At time of writing, the petition had collected over 500 signatures in just 24 hours. If it is as successful as his first petition was on the Protocol, Amenta looks forward to collecting thousands more. To view, potentially sign, and spread the word about the petition, click here so Ottawa will get the message and throw caregivers a lifeline.

Daniel Share-Strom, Community Living Ontario

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