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While the housing crisis spares no one, it hits people with intellectual disabilities even harder than most people. In addition to the economic and social challenges they already face, they have to contend with a housing system that doesn’t always guarantee their security or an adequate living environment. Some even find themselves homeless.

The current model based on privately-owned accommodation must be re-examined and appropriate solutions must be put forward.

The commodification of the right to housing

Some 36,000 Quebecers receive intellectual disability and autism spectrum disorder services (ID-ASD) from the healthcare network. The data available for 28,000 of them gives an idea of how they use these services. A majority live in a “natural environment,” either with their parents (62 per cent) or by themselves (six per cent). The remainder live in “substitute living environments,” also known as “residential resources” that can be divided into three categories:  intermediate resources (IR), family-type resources (FTR) or continuous assistance resources (CAR).

While substitute living environments are essential, given the number of people they house, these resources present significant problems. Firstly, the majority of them are privately owned and cost the government a great deal of money. Secondly, the quality of the services they offer is inconsistent.

Costs related to private accommodation

In 2023, alternative living facilities housed only 28 per cent of people receiving intellectual disability services, but accounted for more than half (51 per cent) of the total budget of Quebec’s Ministry of Health for ID-ASD related services – $805 million out of a total of $1.6 billion.

Moreover, this dynamic seems to have entered an inflationary spiral as, in recent years, costs per user have more than doubled for alternative living environments. Housing people with intellectual disabilities is becoming more and more expensive, even if the quality of services does not seem to have improved substantially.

Profits or services?

The management model for residential resources is largely rooted in a profit-seeking logic, in which the well-being of residents sometimes seems to be a secondary consideration. The vast majority of intermediate or family-type resources are privately owned by individuals or companies.

While some residential resources offer a healthy, safe and stimulating environment, others are singled out for abuse. Since the cases that make it to the media or become the subject of a complaint represent only a fraction of the horror stories in these residences, the extent of the problem is likely underestimated. This can be explained by almost non-existent monitoring by the state and health-care institutions (CIUSSS and CISSS), as well by a lack of employee training.

Yet the logic of housing commodification is contrary to the obligations Canada and Quebec have subscribed to under international conventions. Both the International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of Persons with Disabilities, signed under the aegis of the United Nations, stipulate that housing is a fundamental right that must be guaranteed, particularly for people with disabilities.

Endless waiting lists

The current housing system also generates another major barrier: interminable waiting lists. A person with an intellectual disability must wait an average of 1,211 days, or more than three years, before placement. By comparison, in 2013-2014, the same person waited 767 days. This represents an alarming 58 per cent jump over a ten-year span. For people with autism, the increase from 832 to 959 days represents a 15 per cent increase. The trend is not good.

This prolonged wait is not only a problem for parents who are aging at the same time as their children, it also means fewer choices. There is no guarantee that, after these years of waiting, a person will be able to access a living environment that truly corresponds to his or her personal needs or wishes.

Support innovative community models

The best response to these challenges is to develop and support an ecosystem of innovative community living environments. While there are already many inspiring examples and start-up projects (think Habitations Marie-Clarisse in Quebec City, or L’appart à moi in Saint-Hubert), parents and the organizations behind them face many obstacles.

It is often difficult to obtain stable, sustainable funding from governments to develop and maintain such options. At a gathering of housing non-profits for people with ID-ASD held last year, several representatives estimated that their costs “per door” were lower than those of privately-owned residences. If the government has data on resource costs, it should make them public. Otherwise, it’s high time we had reliable data comparing the implementation and operating costs of innovative models with those of current private models.

On an organizational level, implementing new models requires complex co-ordination between the various players: government, community organizations, families and individuals requiring services. Such a complexity can hinder the implementation of new projects, which are often carried out with considerable effort by dedicated families, who do not have the support of powerful financial lobbies – unlike, for example, some private accommodation resources. Retaining qualified staff in these settings is also a constant challenge due to the lack of funding that would guarantee competitive salaries.

These important difficulties underline the need to review the government’s approach in order to encourage the development of viable innovative solutions, while ensuring adequate funding and greater co-ordination between the various stakeholders.

Putting quality of life first

As things currently stand, Quebec seems to be failing to meet its obligations to ensure that people receive quality services that correspond to their needs. It is therefore imperative to review public policies to propose living environments that prioritize the quality of life and well-being of individuals.

Several organizations, researchers and community players have put forward solutions. Two key actions should be the priority.

The first is to remove the market imperative behind housing. Housing should no longer be seen as a commercial good, but as a fundamental right – as recognized by the UN – especially for the most vulnerable.

The second is to encourage innovative models. The government must actively support the development of projects such as housing co-operatives and inclusive community housing, ensuring sustainable funding and facilitating co-ordination between the players involved.

Substantial investment in innovative living environments would also be a good way to rapidly increase the number of available places and reduce waiting lists, while ensuring that these new living environments respect the wishes and needs of people with intellectual disabilities. It is therefore crucial to begin implementing these two actions as quickly as possible in order to initiate a profound change in the current model.

The housing crisis for people with intellectual disabilities is an unacceptable reality in a Quebec that claims to be inclusive. It is against this backdrop that the Société québécoise de la déficience intellectuelle has launched the “I belong!” campaign, aimed at raising awareness of the situation among the general public and decision-makers, and proposing new models. Solutions are at hand. What’s missing is the political will and financial commitment to match the importance of the issue.