The Problems of Housing Models for Intellectual Disabilities
Commodification of a right
In Quebec, housing for people with intellectual disabilities and/or autism is mainly privatized. This means that private, but government-funded, businesses run these services instead of the government. These companies are seeking to make a profit by offering these services.
However, housing is a right. This means that this fundamental right (housing) is treated as a product that must be bought and that depends on the laws of the market.
In the case of residential resources, the owners’ groups negotiate with the government for the prices of the services provided and how much the resources receive for the maintenance and operation of their building. The greater the needs of the people housed, the more money the resources receive. The more people there are in a resource, the more money the resource earns. This funding model means that residential resources have a vested interest in housing more and more people to make more and more money, which is seen by many as a return to the institutions model.
Variable quality of service
Intermediate resources and family-type resources that accommodate 24% of people with intellectual disability and/or autism, are essential. As these resources are privately owned and operated, there is a wide variety in the shape and quality of care within them. Some residential resources provide clean, bright individual rooms for residents with open and accessible communal spaces and offer impeccable individualized services to residents. The people who live there are happy to be there.
Unfortunately, this is not the case everywhere. Some residential resources offer a poorer quality of care that can be harmful to some residents. For example, in recent years, more and more cases of mistreatment have been reported. In 2023, an article pointed out that “about fifteen cases of mistreatment of an elderly or person with a disability are now reported every day in Quebec.”
The government’s lack of oversight within these housing resources partly explains the situation. Lack of staff training is another problem. As a result, many people do not feel comfortable in these housing environments or may be mistreated there.
“Too often we see that the sense of security in resources has disappeared, and that fear sets in. Some of us also suffer from the poor living conditions of residential facilities“
Fédération des Mouvements Personne d’Abord (Stock photo)
Even though all residential resources are expected to provide a safe, healthy and stimulating environment, it is clear the quality of services varies from resource to resource. At the end of the day, it is the government’s responsibility to check what is happening inside housing resources and to make sure the staff are properly trained.
Very high costs
It is perfectly okay for residential resources to be expensive: they’re essential services. The problem with the current model is that while these services are expensive, the quality of service is not always great, and people rarely have the ability to make their own choices.
Indeed, in recent years, the costs of intermediate resources, family-type resources, and continuous assistance resources have exploded. These homes, in which the quality of services varies, are becoming more and more expensive.
Currently, only 27% of people receiving intellectual disability and autism (ID-ASD) services from the healthcare and social services network live in these housing resources. However, in 2022-2023, 51% of the total intellectual disability and autism (ID-ASD) budget was dedicated to these resources. This means that more than half of the total ID-ASD budget is used to house a minority of people receiving services.
These figures show that even if a lot of money is invested, the current model still fails to meet needs. We need to consider different models.
Cost per person
The fact that the government privatized a large part of the housing services offer makes it very expensive. Between 2013-2014 and 2022-2023, annual costs per person in residential resources increased significantly:
- In intermediate residence, from $37,351 to $78,685 (+110%).
- In family-type resources, from $27,845 to $68,222 (+145%).
- In a continuing assistance residence, from $102,771 to $234,172 (+127%).
If the cost of these services had kept pace with inflation, it would have risen by only 27.4%. This means that there was a cost explosion in all residential resources compared to inflation over the same period.
Long waiting lists
In addition to being expensive, residential resources are very difficult to access as there are long waiting lists and a shortage of places. This can cause a lot of problems, especially when a person urgently needs to find a place to live.
For the province of Québec as a whole, a person with an intellectual disability must currently wait an average of 1211 days, or more than three years, to get a place in a residential resource. In 2013-2014, the wait time was 767 days. This means that the average wait time has increased by 58% in less than 10 years. Moreover, there is no guarantee that this long wait will offer a person a housing environment that corresponds to their personal wishes.
“We have parents who are in their 80s and they put their adult child on a waitlist 10 years ago for residential services and they’re still not called off the waitlist. But if an emergency happens, they will be prioritized at that time”.
Lily, Service provider
In addition, since these are averages, it means that there are people who wait even longer than three years. This is particularly true for people aged 45 and over, who have much longer waiting times than the average.
"My 43-year-old son has been on a waiting list for 15 years. What will happen? Will he have to wait another 15 years for everyone around him to die, to get a place?"
Rissa, 77 years old
In addition, what organizations and families say is that placements are often made in emergency contexts where the parents or the family can no longer care for their loved one with an intellectual disability.
Lack of places and long waiting lists can force people to live in environments that are not at all suitable for them. This is particularly the case for Chloé, 34, who has a moderate to severe intellectual disability. She has been housed for more than a year at the Institut universitaire en santé mentale de Québec, even though she does not have any mental health condition.
"It's not a living environment for someone who isn't sick. All her activities are stopped, so she doesn't go out... She is alone. She has lost a lot of gains, because she has no stimulation."
Marie-Josée, Chloé's mother
Public policies do not seem to grasp the challenges ahead
Current public policies, that is, government decisions, do not adequately address the housing needs of people with intellectual disabilities. In addition, the government does not seem to consider future challenges.
Even though all the data presented on this page come from the government itself, it is pretty clear the government does not have solutions to offer right now.
Few innovative housing models, by and for the community
Innovative housing models are implemented by and for the community. They provide healthy and stimulating housing environments. These housing models are different from residential resources, which are likely not as involved with the community. In addition, many of the innovative models offer other services, such as training on independent living or socio-recreational activities not often found in residential resources.
The people and organizations that implement innovative housing models must work very hard, most times with limited or no budgets or staffing support, to make them a reality. They face numerous challenges and roadblocks along the way. It usually takes several years to complete these projects.
We're steering a boat, but the rowing team is starting to run out of steam, [...] Many parents, faced with the magnitude of the task, are not capable.
Daniel, president of L'Appart à moi, an innovative housing model located in St-Hubert.
1. Financial challenges
The first challenge is financial. It takes a lot of money to build or adapt a building, and then to maintain it. The problem is that innovative housing models don't receive as much money from government as residential resources do, when they even do. This means people have to be creative to find other ways to fund their innovative housing projects.
2. Organizational challenges
A second type of challenge is organizational. For many people who work on innovating housing projects, this is the first time they are doing so. They must learn a lot of new things and navigate a complicated bureaucratic system, for example to apply for different grants or receive approvals from municipalities and other government bodies. This requires a lot of time and energy and can lead to exhaustion. Many innovative models begin through the involvement of parents, who are often already tasked with the daily care and support of their family member with an intellectual disability.
3. Challenges in Employee Retention
A third type of challenge is employee retention. Employee retention means the ability to keep the same people in the job for a long time. Since innovative housing models do not receive enough funding, the people who work in them are sometimes not well paid, meaning some employees end up leaving the project. This creates a lot of instability because:
- The people who remain must do more work
- It takes time to hire new people
- It takes time to train new people.
This instability therefore adds costs to projects, at a time when these projects are already struggling for new and sustainable funding.
People experiencing precarious housing and homelessness, especially those with intellectual disabilities, face many difficulties in escaping or leaving these situations more permanently. First, people with intellectual disabilities experiencing homelessness may struggle to find places to get help, such as places to sleep or eat for free.
Sometimes, communicating, making themselves understood, or understanding certain things, like rules or social norms, can be difficult for them, especially in a constantly changing environment. This can make them more vulnerable to mistreatment and exploitation by others.
When I was on the street, I wasn't taken seriously by the police. [...] I was never able to sleep.
Yan Loup, who has experienced homelessness
Secondly, the places where they can stay temporarily are not always adapted to their specific needs. Everyone is different, so solutions that really work for them are needed.
“There are shelters, but I don't feel comfortable sending them there because they’re shelters where they have to go out during the day and they have to go back in the evening and a lot of them have problems with alcohol and drugs and I feel that sometimes they will get lost in the shuffle and we don't know what will happen to them.”
Theresa, Service provider
Living on the streets can lead people with intellectual disabilities to experience increased interactions with the police and criminal justice systems. This is because living precarity and change on a daily basis can lead to the development of aggressive behaviours. Being mistreated and bullied can also result in behavioural dysregulation. In addition, poverty, hunger and insecurity of place and space can lead to criminal behaviour and/or stealing.
As an example, some people may steal food or stay in places where they are not allowed just because they are looking for a safe place to sleep. They risk being arrested by the police and imprisoned, even if they don't always understand why what they did was wrong.
Taken together, these factors [lack of services, poverty and social exclusion, editor's note] mean that some people with intellectual disabilities find themselves in difficult situations, sometimes of homelessness, sometimes of addiction. These situations can lead to disruption of social norms, to criminality of subsistence, and ultimately to prosecution and imprisonment.
Prison et déficience intellectuelle, ça ne va pas! (in French)
Moreover, researchers and organizations have suggested that the criminal justice system is not well adapted to the needs of individuals with intellectual disabilities, especially with regard to sentencing, isolation measures, rehabilitation, etc.
Finally, they may also struggle to get the medical care they need. There is also increased risk of drug addiction which can complicate one’s health status. They may also struggle to access basic hygiene products. As they may have specific needs for their mental and physical health, this further complicates things. All of this puts them in a very precarious situation, where they struggle to find the resources and support they need to get out of homelessness.