To Live in Dignity
Today, I was attending the presentation of Research on Home Support Services, done by Ex Aequo. The home help and support services, even if crucial to inclusion, are in peril! Ex Aequo’s results are clear: the home help and support services’ dossier has not improved since the 80s. While we are mostly preoccupied by ‘dying in dignity’, Ex Aequo asks: ‘When will the MSSS, Agence de Montréal and the CSSS allow the people with functional limitations to live in dignity? »
I particularly appreciated Ex Aequo’s discourse today. Even if the conclusions are deplorable (some people can’t even have lunch because of a lack of services!), I thought it was reaffirming to see an organization like Ex Aequo state out loud that the situation for individuals living with disability is deteriorating. In Ex Aequo’s press release, we read that individuals living with disability are ‘exposed, from the moment they are born, or since their accident or illness, to exclusion, discrimination, poverty, injustice, incessant struggles, and to the impunity of numbers of professionals, ancillaries and aids. Their rights are flouted, even if the law and policies recognize their fundamental, economical, social and cultural rights.’ This is not pretty, but o so true!
According to the research, the health and social services system only partially responds to the needs of people living with a physical disabilities and generally does not consider their desire to actively participate and capacity to be included socially and to make meaningful contributions to society.
Results of a survey of 270 people and 40 discussion group participants reveal that:
* there is a 868 hours a week deficit of home help and support services, between the necessary hours estimated by the 241 people who receive services and those allowed by the CSSS;
* there was an average of a 14 month waiting period for 29 people.;
* the entourage compensates, freely and almost entirely, the weekly deficit between the necessary hours estimated and those allowed (840 hours);
* the presence of a relative often interferes with the granting of services and the intensity of these;
* the evaluation tool, based on the loss of autonomy, doesn’t respect the social participation objective and the free right of individuals, often affirmed in the legislative tools;
* the training of the personnel responsible for the needs’ evaluation and of the those who provide services is not adequate in humanely and technically speaking;
* many of professionals, ancillaries and aids have disrespectful attitudes that manifest in the form of intimidation and threats and illustrate the extent of some breaches of discipline;
* beneficiaries and their families do not have access to information regarding the different modes of granting services and the complaint filing process in case of dissatisfaction;
* total and partial reduction of services and file closures are frequent.
The research is filled with testimonies of users of the home help and support services. Here are some excerpts of the report:
* I cut my activities because I don’t receive services every week. I socialized less this winter… the solitude is starting to burden me…
* I hate the word « natural caregiver ». It is not natural, it never has been. I always wanted to be a mother, not a natural caregiver, nurse or doctor…
* I cancel my economical advancement opportunities because the system doesn’t respond – isn’t able to respond – to my need.
* It is made for elderly people. They want to evaluate the loss of autonomy, as we’re always in a quest for autonomy.
* As soon as we show interest for something, we get threatened…
* As long as the government seeks to lower the service hours per individual, we will never get full and entire inclusion.
* She said : « …but don’t forget that we have the power to institutionalize you. » Then I said : « Oh no! I won’t endure psychological violence. »
Finally, concrete actions were presented. Ex Aequo requests that the Agence de la santé et des services sociaux de Montréal and the CSSS:
* adopt the social inclusion principle;
* immediately cease total or partial service reductions;
* increase the quality and the number of hours of services;
* cease charging for home help and support services;
* cease all threats of institutionalization;
* develop a needs’ evaluation tool, a humane and non-exclusively medical administration, that considers social inclusion factors;
* implant granting modalities for flexible services that allow social inclusion, as the Chèque emploi-service (CES).
By unveiling this research, Ex Aequo wants to create a mobilization movement so that individuals living with disabilities have access to quality home help and support services. The reason is quite simple: without these services, social inclusion will remain a mirage. It is very exciting to see an organization like Ex Aequo make a plea for mobilization. What are the next steps? Is the associated milieu for the defense and advocacy of the rights of individuals living with disability ready to fight? It’s been a while since we took the streets. RAPLIQ is ready (thanks to Projet Montréal for giving us the occasion to practice). Are you ready?
The details of the research are available online. Enjoy the read!
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