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The Centre d’expertise et de services en polyhandicap (CESP)

When Diane Chênevert and her partners founded Centre Philou in 2005, they were driven by a vision of improving the quality of life for families of children with polyimpairment. Since 2017, the Philou LAB has been developing resources and services for the polyimpaired clientele while raising awareness of polyimpairment through research and training. It was through the development of Philou LAB’s expertise that we realized the need to combine our strengths with those of other stakeholders to forward our ambitions.

And so a great collaborative project was born! Following a rigorous elaboration of a common vision involving family and expert consultations from the health, legal, educational and economic sectors,le Centre d’expertise et de services en polyhandicap du Québec (CESP) has materialized.

The need for such a project

The CESP meets a real need – the need to create an expertise focused on polyimpairment. Unlike other countries, polyimpairment is not recognized as a special condition in Quebec. This population is largely invisible not only in the public arena, but also in the medical and educational networks, as it is often diluted with other types of disability.

Among others, polyimpaired people are:

  • hospitalized several times or often end up in emergency rooms unnecessarily;
  • vulnerable to the lack of understanding of their basic needs;
  • depend on the physical and psychological health of their loved ones.

* It should be noted that the Quebec government has yet to recognize an official definition of polyimpairment. The Ministry is not talking here specifically about the needs of polyimpaired people, but rather about other types of disability.

The Ministère de la Santé et des Services sociaux du Québec has itself recognized that there are still gaps between the needs of people with physical and intellectual disabilities and those with autism spectrum disorders and an adequate level of response. * This reality is even more marked in the case of the polyimpaired population, who are neglected in comparison with other groups of disabled and non-disabled people due to the lack of government recognition of polyimpairment. The principles of inclusion, development and care are generally applied differently to polyimpaired persons than to populations with less severe disabilities.

The needs of polyimpaired persons are complex and evolving. The system is not equipped to meet such needs, which require in-depth knowledge. This reality is caused by a multitude of factors:

  • lack of recognition of vulnerable status;
  • the absence of a clear national framework for effective management;
  • inadequate remuneration of doctors in view of the complexity of the care required by this population;
  • compartmentalization of care and services, resulting in a significant lack of communication between stakeholders;
  • under-funding of educational and community services, which is not commensurate with the complexity of the task;
  • the disappearance of educational and community services for the adult polyimpaired clientele ;
  • setting aside the needs of parents of polyimpaired persons.

The result of these major shortcomings is a feeling of emptiness and powerlessness among stakeholders. The result of these major shortcomings is a feeling of emptiness and powerlessness among stakeholders.

The project

Partners from the health and education networks, researchers,community resources, universities and parents are at the heart of the Centre d’expertise. The aim of this combined effort is to ensure that the well-being of polyimpaired people, and their families, is taken care of seamlessly and continuously. It is important to note that this innovative project meets the expectations of strategic government policies aimed at better integration of services for people with disabilities and their families.

Taking a revolutionary holistic approach, the CESP will be based on the health of the individual throughout his or her life, encompassing medical, social, educational, economic and legal aspects. The core of the project is the creation of an interactive digital platform where parents, caregiversservice providers (including the Quebec government) could retrieve information about the polyimpairment individual’s service provision. Innovation and the use of new technologies such as teleconsultation will be prioritized. In addition, these new technologies will be combined with human resources supported by a permanent core team. With this system, parents will be seen as the main stakeholders in the intervention with their child, unlike current practices.

  • 20 million in government investment (representing 59% of expenditure);
  • 39 million in direct savings (reduction in inadequate and excessive healthcare services) ;
  • 76 million in societal contributions (increased productivity as parents return to the workforce) ;
  • 115 million in total economic benefits. **
  • return of $5.76 ;
  • savings of 1.95% in direct costs to the healthcare system;
  • contribution of 3.81% to Québec’s GDP. **

*These are predictions calculated according to the Quebec Ministry of Health’s formula for assessing the potential value of innovative projects.
** All other things being equal.

Elsewhere in the world

For many years, the Centre Philou has been committed to developing research on the polyimpaired population, and to democratizing this knowledge through collaboration with various partners. The realization of the CESP is a breath of fresh hope for the advancement of practices in the world of polyimpairment.

First Forum In Quebec on polyimpairment

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On October 30, 2023, the first edition of this face-to-face event will take place at CHUM under the theme “Deconstructing myths, building the future“. Stakeholders from the community, academia, business, health and education sectors will gather to discuss life and solutions to the many issues facing children and young people with polyimpairment. The event will also mark the launch of the Centre d’expertise et de services en polyhandicap (CESP).
An event not to be missed!

Sources

  • This article was made possible thanks to the expertise of Deloitte.
  • PhilouLAB – Campus Philou.

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