Context of housing when living with an intellectual disability 

In Quebec, having a home is a right. Everyone has the right to live in a healthy, safe and nurturing living environment. 

DEFINING ‘HABITATION’ AND HOUSING

According to the Larousse dictionary, ‘habitation’ refers to “the action of inhabiting, of staying in a long-term way in a house or a building”. A habitation is therefore a place where one lives in a stable and continuous way. It’s a real home

For its part, a dwelling is defined as “a part of a building, a house, where one lives”. It can therefore be, for example, an apartment or a room.  

Finally, accommodation comes from the action of hosting, which means “to give temporary housing to someone, to accommodate them temporarily”. The accommodation is therefore temporary. https://www.larousse.fr/dictionnaires/francais/h%C3%A9berger/39286  

People with intellectual disabilities have the right to live in a home that they enjoy and that respects their dignity. This right is protected by international laws that Canada and Quebec have agreed to follow. For example, the International Covenant on Economic, Social and Cultural Rights (ICESCR) and the Convention on the Rights of Persons with Disabilities state that everyone has the right to adequate housing that meets their needs, but also to be able to participate in society and be treated with respect. 

The right to housing applies to everyone, everywhere in Quebec. However, according to many member organizations of the Société québécoise de la déficience intellectuelle (SQDI), people with intellectual disabilities, and their parents, have concerns about housing. These concerns arise not only from people living in big cities, but also among those living in small towns and rural areas. Housing concerns are present in every part of Québec.  

Many people say that they would like to live in a different place but cannot do so. This may be because there is a lack of resources to accommodate them according to their preferences or because they do not have the financial means to do so. This means that the right to housing is not always respected for people with intellectual disabilities. 

There are different housing models for people with intellectual disabilities. They can be divided into two main categories: natural living environments and substitute living environments. 

Natural living environments are either the family’s home, or housing settings in which people live independently, with or without support. A person living with their parents or siblings is living in a “natural living environment”, as is a person who lives in an apartment by themselves or with other persons of their choice. When a person lives in their own home and has regular visits from service providers, it is still considered as a natural living environment with support.  

Substitute living environments, on the other hand, include different types of housing models. They are called “substitutes” because they are supposed to replace natural living environments, either temporarily or permanently. There are two main categories of substitute living environments.  

1. Residential resources: which include intermediate resources, family-type resources, continuous assistance resources, and alternative homes.  
2. Innovative housing models: which are living environments developed and supported by the community. 

Residential Resources 

A residential resource is a place where people who cannot live fully independently are housed. These people may have an intellectual or physical disability, be autistic, have issues related to aging, mental health conditions, addictions, behavioural disorders, or several of these situations at the same time.

Residential resources are part of the health and social services system. There are four types of residential resources: intermediate resources, family-type resources, continuous assistance resources, and alternative housing. Each type has its own unique characteristics.  

Intermediate Resources (IR) 

• Intermediate resources are residences that can accommodate several people.  
• Intermediate resources are mostly managed by private businesses, i.e. they belong to people or companies and not to the government. These residences seek to generate a profit for their owner or shareholders. Even though intermediate resources are mostly private, it is the Quebec government that funds their functioning and operations.  
• In some cases, intermediate resources are managed by not-for-profit organizations. In these cases, organizations are not looking to make a profit, but rather seek to offer a service to their members.  
• Finally, the person who owns an intermediate resource does not live on the premises – this is the main difference from a family-type resource. 

Family-type resources (FTR) 

• Family-type resources are also generally private businesses. However, they differ from intermediate resources.   

“In a family-type resource, the person is welcomed and integrated into the main residence of the person or family who hosts them. There are two types of family-type resources: foster families, which are intended for children, and foster residences for adults.”

CIUSSS de l’Ouest-de-l’Île-de-Montréal | Services résidentiels (gouv.qc.ca)

• In these resources, people may have their own room, or may have to share a room. They must follow the rules and schedules of the person hosting them. For example, they don’t always have access to the kitchen, must eat at scheduled times, cannot always have guests when they want, or go out when they wish.   
• Generally speaking, family-type resources host a smaller number of people than intermediate resources. 

Continuous Assistance Resources (CAR) 

• Continuous assistance resources welcome people who have more important needs, such as those who have significant behavioural challenges or complex health needs.  Continuous assistance resources are owned and managed by the government.  
• In theory, these are temporary living environments. People who go there are supposed to receive rehabilitation or recovery support, enough to find a balance and reintegrate into another type of living environment. Unfortunately, due to a lack of appropriate housing spaces for them, people often end up living in these resources permanently. 

Alternative Housing 

• For the last few years, the Quebec government has been implementing a new housing model, called Alternative Housing. Alternative Housing are places where adults with special needs, such as intellectual or physical disabilities, can live. These 12-bedroom homes are designed to be welcoming and family-friendly. They must offer a safe and adapted environment, with activities and services that meet the needs of each person. 
• However, there are significant challenges. The main problem is the lack of qualified staff. A recent article pointed out that in some regions, less than half of the places in alternative housing have been filled. The Quebec government must intensify its efforts to recruit workers for alternative housing. 

Unlike residential resources, innovative housing models are generally not part of the health and social services network. While there may be service agreements with the government for some at-home care services, these housing models are created by and for the community and generally do not receive government support for their funding and creation. They are created and managed by people with an intellectual disability, their families, or community organizations.  

These models seek to satisfy the wishes of people with an intellectual disability to live in a place that really suits them. In this type of housing, great attention is given to the ways to improve and increase the social participation of the people who live there.  

These housing models can take different forms to meet the specific needs of people with intellectual disabilities. Because innovative housing models are not private businesses, every dollar invested is used to provide services to people and to the operations of the living environment (for example, by maintaining the building or recruiting staff).  

In fact, the organizations set up to create and manage these housing models are usually non-profit organizations or cooperatives. 

The homes of the Association pour l’intégration sociale de Québec (AISQ) 

The homes of the Association pour l’intégration sociale de Québec (AISQ) offer apartments adapted for people with intellectual disabilities or autism in a socially inclusive context. Other organizations have apartments in the building and share the facilities. 

L’Appart à moi

“L’Appart à moi” project was initiated by a group of parents who wanted to provide a stable and safe living environment for their young adults with Down Syndrome or other forms of intellectual disabilities. 

From their early childhood, the residents of L’Appart à moi have been encouraged to develop intellectual, physical and social skills, and have been included within their families and communities. This means that when they reach adulthood, they usually show a high level of resourcefulness and want to lead a fulfilling and independent life. 

To build this project, the team surrounded itself with partners and the support of the community, and set up a non-profit structure. Located in the agglomeration of Longueuil, “L’appart à moi” has built a building that can accommodate nine people, with the space necessary to offer them the required services. 

L’Arche

Community life and the sense of belonging that comes with it are part of what L’Arche offers; a network of relationships that develops and transforms each other’s worldviews. 

In this section, we have analyzed data published by the Quebec government between 2013-2014 and 2022-2023. These figures provide a better understanding of the housing and subtitute living environment situation for people receiving services from the Ministère de la Santé et des Services sociaux in intellectual disability and autism.  

Most people receiving intellectual disability and autism services in the Health and Social Services network live in natural environments (68%). A large majority (62%) live with their parents. Few of the people receiving services live independently (only 6%).  

Most of the people who do not live with their parents live in intermediate resources (13%) and family-type resources (11%). In addition, just over 3% live in resources with continuous assistance.  

Statistics coming from the Ministry of Education underline a sharp increase in the number of kids or young adults with intellectual disabilities or autism. As an example, there are about 2500 students who have moderate to profound intellectual disabilities. Because the ministry of Education does not keep track of the number of students with mild intellectual disability, we don’t know exactly how many there are. 

It is very likely that some of these young people will need housing services or will want to live independently, that is, to live alone or with others of their own choosing. It is estimated that this will happen fairly quickly, in a few years at most. 

Looking at the current figures, about 40% of adults aged 22 to 44 with an intellectual disability live in substitute living environments, i.e. outside the natural environment. Based on these numbers and ratios, it can be estimated that of the 2500 students with an intellectual disability, more than 1000 will soon need a place to live in substitute living environments.  

Finally, in 2024, housing a person in substitute living environments costs about $90,000 per year. This means that if nothing changes, the Quebec government will soon have to spend an additional $90 million per year just to house these young adults. 

In the past, people with intellectual disabilities had a shorter life expectancy than the general population. Thanks to medical advances and improved social services, their life expectancy is now almost similar to everyone else's. This creates new opportunities but challenges, especially for housing. 

The aging of people with intellectual disabilities also comes in parallel with the aging of families. This is called parallel aging (also called “double aging”). Parallel aging raises certain issues. For example, as families get older, it can become more difficult for them to care for their loved one with an intellectual disability whose own needs may change or become more complex. 

Parents may also have their own issues related to health or aging in general. This means that they are sometimes less able to care for their loved one with an intellectual disability. Siblings, when present and available, may also be required to take on new care responsibilities when their parents age or die. It also means that some people with intellectual disabilities may have to take on the role of caregivers.

“I take care of my maman a lot, the parents, the house, I do the housework. That’s it, I do a bit of shopping because my maman ended up at the hospital, she has Alzheimer’s. She is 93 years old."

Annie, neurodiverse older adult

Since many people with intellectual disabilities still live with their parents, parallel aging is likely to affect many families.  

"We thought we were parents who can't afford to grow old. [...]We didn't want her brother to find himself managing her sister if something happens to us"

Sylvie, mother of Chloé, a 25-year-old woman living with an intellectual disability.

The aging of parents and the fact that they are no longer able to take care of their loved one who lives with them may create difficult situations, especially since there is already a lack of space in residential resources. Based on current figures, it is estimated that thousands of people will need to be housed in a different setting in the coming years. It is crucial to prepare for this situation.

Precarious housing and homelessness, that is, when people do not have a fixed place to call home, is a growing problem in Quebec. Those phenomena can affect anyone, including people with intellectual disabilities.  

While there is no data on the situation of people with intellectual disabilities related to homelessness, several organizations and researchers have said that many people with intellectual disabilities experience precarious housing situations or are homeless. For example, some people might live in temporary shelters, rooming houses, couch-surf with friends, etc. 

There are many reasons why people with intellectual disabilities may find themselves homeless. These reasons include: 

• The lack of living environments adapted to their needs 
• Difficulties obtaining services 
• Financial precarity and poverty 
• Social isolation and stigma. 

In other words, lack of adequate services and satisfying housing models can lead people with intellectual disabilities to live on the streets.