Appropriate, affordable housing for brain injury survivors

In addition to the physical changes experienced after brain injury, many of the following common cognitive, emotional, and behavioural symptoms/impairments can increase the chance of homelessness:

  • Anger management issues
  • Challenges with processing information
  • Engagement in high-risk behaviours
  • Inability to initiate
  • Inappropriate emotional response
  • Lack of impulse control
  • Memory impairments
  • Perseveration
  • Poor judgment

Additional contributing factors include discrimination, intimate partner violence, poverty, and systemic barriers.

Discrimination
Discrimination is often a precursor to homelessness and can continue after the fact. Discrimination is when a person is treated differently based on race, religion, ability, mental illness, age, gender, or socioeconomic status. Individuals facing discrimination often experience restricted options, difficulty accessing housing and services that contribute to their position on the streets [1].

Approximately 28 – 34% of people experiencing homelessness in Canada are Indigenous peoples. This is a percentage of the Indigenous population, which makes up 4.3% of the overall Canadian population [2].

Intimate partner violence
Intimate partner violence (IPV) and family violence can lead to homelessness. It is estimated that 237 people per 100,000 people are affected [3] (Statistics Canada, 2016). In some cases, it becomes necessary to leave home quickly with no supports. According to the Canadian Observatory on Homelessness:

This is particularly an issue for youth and women, especially those with children. Women who experience violence and/or live in poverty are often forced to choose between abusive relationships and homelessness. Young people that are victims of sexual, physical, or psychological abuse often end up experiencing homelessness. As well, seniors that are experiencing abuse and neglect are increasingly at risk of homelessness.” [4,5].

Poverty
Many individuals who live below the poverty line are living paycheque to paycheque. They are at risk of being homeless, particularly if their ability to work is compromised through job loss or illness.
System failure
Sometimes Canadian systems don’t work as intended. This includes inadequate discharge planning for people leaving hospitals, corrections, and mental health and addictions facilities and a lack of support for immigrants and refugees [6]

Homelessness is not something that happens quickly and in isolation. There are usually many cascading effects that lead to homelessness and it is very rarely a choice. 

Statistics on homelessness and brain injury

  • Almost half of all homeless men who took part in a study by St. Michael’s Hospital had suffered at least one traumatic brain injury (TBI) in their life and 87% of those injuries occurred before the men lost their homes [7].
  • Studies find that 60% of homeless individuals with TBI report sustaining multiple injuries [8].
  • The majority of first TBIs occur prior to homelessness, suggesting that brain injury is a risk factor for homelessness. However, homelessness has also been found to be a risk factor for subsequent TBIs [9].
  • TBIs have been linked to increased mental health problems, physical health problems, and drug problems among the homeless [10].
  • Homeless individuals with TBIs appear to have worse cognitive impairment than homeless individuals without TBIs [11].
  • In a study of women with TBI in Canada, poverty was found to be a significant barrier to accessing health care [12].

Advocating for affordable, appropriate housing

No one should have to choose to pay rent over food, but it happens everyday. Financial assistance in provinces is too low – especially in cities – for people to find affordable housing without sacrificing basic needs. Once a person becomes homeless, it becomes even more difficult to find housing. There is also a stigma around homelessness driven by ignorance and judgement, and that stigma can negatively affect a person’s ability to escape homelessness. This is especially true for individuals with a brain injury who may not be able to work, don’t have the cognitive abilities to manage money, or are experiencing additional challenges.

Housing programs geared towards supporting individuals with acquired brain injury (ABI) are underfunded and specialized ABI housing programs in Canada have extensive wait lists, leaving people exposed to ongoing social, emotional, and financial risks.

As brain injury is a lifelong condition, affordable housing support and strategies need to be improved to address barriers and supports across their life span. We also need to understand the path to homelessness for those living with brain injury, as it is a critical piece in the prevention strategy.

Housing First model

Housing First is “a recovery-oriented approach to ending homelessness that centers on quickly moving people experiencing homelessness into independent and permanent housing and then providing additional supports and services as needed… The basic underlying principle of Housing First is that people are better able to move forward with their lives if they are first housed. This is as true for people experiencing homelessness and those with mental health and addictions issues as it is for anyone. Housing is provided first and then supports are provided including physical and mental health, education, employment, substance abuse, and community connections.” [13]

This model focuses on providing permanent housing to individuals despite their circumstance and needs.

  • Some people need affordable independent housing options that do not have extensive wait lists.
  • Some people need supported living where they may have a room or an apartment but have access to supports as needed.  This is essential for those with memory impairments and organizational challenges.
  • Some have complex medical needs and require full-time care, but are in a long-term care facility with seniors with Dementia and Alzheimer’s. While their medical needs are provided for, this does not meet their need for socialization and engagement with peers in any meaningful way.

For those living with brain injury, supports need to be put in place to ensure housing is secured and sustainable over the long-term. Supports should include:

  • Access to mental health and other health care supports
  • Addiction services specific to those with brain injury
  • Affordable childcare
  • Community engagement
  • Help with filling out forms – health cards, income taxes, available subsidies, etc.
  • Help with organization – paying bills, opening mail, budgeting, planning, etc.
  • Mediation and dispute resolution supports
  • Supports for victims of intimate partner violence
Housing first in action: At Home/Chez Soi project
The At Home/Chez Soi project was a $110 million government-funded project by the Mental Health Commission of Canada to explore housing-first approaches to assisting the homeless population in Canada. The project was four years long – 2 years of active participation with 2 years of follow-up – and covered the cities of Winnipeg, Toronto, Vancouver, Montreal, and Moncton. There were over 2,000 homeless participants with mental health challenges. Along with the focus on mental health, the different cities had their own smaller focuses [14]:

  • Vancouver, British Columbia – people also experiencing problematic substance use
  • Winnipeg, Manitoba – urban Indigenous population
  • Toronto, Ontario – ethno-racialized populations, including new immigrants who do not speak English
  • Montréal, Quebec – included a vocational study
  • Moncton, New Brunswick – services in smaller communities

This project provided housing to people experiencing homelessness along with various mental health service models to determine success rates and more. 66% of the participants had reported a brain injury, or an instance of trauma/unconsciousness that could have led to a brain injury. At Home/Chez Soi showed that Canada could make positive strides to ending homelessness by using a housing-first model. The following findings were shared in the final report.

Over the two years of the study, participants in Housing First spent an average of 73% of their time in stable housing compared with 32% in treatment as usual (TAU). In scientific terms, these differences are considered to be highly significant; that is, there are large differences between the groups. Specifically, since the study used a randomized design and all other characteristics that could result in stable housing were equivalent between groups except the intervention, the finding can be reasonably and confidently attributed to the provided housing [15].

  • Housing itself was motivating to participants, since it inspired people to behave in a way that would maintain their homes and allow them to reclaim their lives.
  • Housed participants from the HF group reported more choice over where they lived, including the choice to live in a place where they felt safe, and in some cases away from previous problematic social circles.
  • Housed participants in the HF group often expressed a feeling of stability and permanence [16].
  • Participants had lower uses of emergency shelters and emergency hospital services.
  • HF participants had improved eating and health habits because they had a place to store food (self-reported).
  • All participants reported less contact with the justice system.
  • Every $10 invested in Housing First leads to between $3.42 – $9.60 average reduction in costs of other services.
  • Quality of participants’ daily lives changed from being survival-oriented to being “more secure,” “peaceful,” and “less stuck,” which enabled them to move forward in their lives

Any solution for homelessness will require a collaborative approach of all levels of government, community organizations, private companies and, most importantly, the input of those living with brain injury.

The difference between social housing vs. affordable housing
Many people use the terms’ social housing and affordable housing as if they are the same – but they have different meanings. Social housing is housing that is subsidized by the government and made available to low-income households.

Affordable housing is defined by the Canadian Mortgage and Housing Corporation as, “including housing provided by the private, public, and non-profit sectors. It also includes all forms of housing: rental, ownership, and co-operative ownership, as well as temporary and permanent housing.”

Housing reports and resources

How to advocate for appropriate, affordable housing

Advocacy for appropriate, affordable housing happens at several levels. There needs to be more education of the public on the housing plight in Canada; outreach to the National Housing Strategy council advocating for appropriate housing for brain injury survivors; and large-scale advocacy from organizations to government departments.

Ways to advocate for appropriate, affordable housing include:

  • Writing to your local government representatives
  • Sharing research and information about housing with your network
  • Signing petitions for organizations
  • Contact your local brain injury associations to see if they are involved in any initiatives

Resources


See sources

Long-term care planning resources by province and territory

Long-term care homes offer a safe, supportive environment for people who can no longer live at home. These facilities address their medical needs and give you peace of mind. The key is finding the right long-term care home that works with the required specific needs.

Alberta
British Columbia
Manitoba
New Brunswick
Newfoundland & Labrador
Northwest Territories
Nova Scotia
Nunavut
Ontario
Prince Edward Island
Quebec
Saskatchewan
Yukon

Housing

After your initial medical recovery, there’s a big question facing you and your family: where are you going to live? Depending on the severity of your injury and the extent of your needs determined in consultation with your medical team and family, there are a few options available to you.

Topics in this section include:


Living at home

If you’re able to complete activities of daily living (ADLs) on your own, you may be able to live in a house or apartment. Before or upon returning home, your doctor may recommend that you work with an occupational therapist. Occupational therapists help survivors redevelop skills needed to complete activities of daily living. They also do home evaluations and recommend changes that will make the home environment more functional for you. They will start with a functional assessment of your needs and the environment, identifying impairments, barriers, and solutions to those problems. This could include lower counter heights, labelling items, or organizing areas of your home to create a more fluid routine.

Having a caregiver

If you require assistance with activities of daily living (ADLs) you may need a caregiver. This could be a personal support worker from a home-care provider or a family member. The doctor may recommend that you have someone with you for longer periods of time when you first return home, even if you are able to live alone. Caregivers will help you get used to being home, identify areas where you may need changes/adjustments to your environment, and monitor symptoms.

Living at home is familiar and comfortable and helps build/maintain independence. Costs for home care depend on where you live, the services you need, and how often you need them.

Group communities with assisted care

Communities with assistive care are single or multiple buildings with communal space. This is also sometimes called supported living. Residents are provided with their own room, apartment, or living space. They allow you to be independent but have access to assistance when needed. This includes assistance with medical needs, mobility, and activities of daily living.

Wait times and costs for assisted living communities will vary from place to place. There are both public and private assisted living communities. Public means the facilities are subsidized by the government, while private means you take on all the monthly costs.

Your local brain injury association will have more information on services in your area.

Short-term care

You might need full-time care for a short period of time before you’re able to return home or before you’re able to move into a long-term care room. Short-term care beds are commonly located in long-term care facilities but are specifically used for short stays.

The length of time you can stay in short-term care ranges from a few days to a few months depending on your facility.  If there are no facilities close to you, home care providers are also available for short periods of time. Short-term care is also used as a respite (short break) for caregivers who look after someone at home.

Long-term care facilities are for people who need care and aren’t able to live at home. There are specialized long-term care homes for people living with brain injury, but they have limited beds/rooms. This means long wait lists. In some cases, a person on the waitlist may never get a room since residents may live there for decades.

The majority of long-term care facilities are designed for seniors with reduced abilities and persons with disabilities. There are both public and private long-term care homes in Canada.

Public vs. private long-term care

Government-subsidized long-term care is the most affordable option for many people. The provincial and federal governments pay for personal and medical care, while residents are responsible for accommodation costs (room and board). Publicly-funded homes have long waitlists due to the limited number of beds/rooms. Waitlists can also depend on where you live. Accommodation rates are set by the province/territory, so they’ll be different depending on where you live.

Private long-term care facilities have no subsidies, which means all monthly costs are taken on by you or your family. These costs will vary depending on the medical services offered at the facility, where it’s located, the type of room you want, and other factors. Private long-term care is more expensive but may have more availability and shorter waitlists.

How do I choose a long-term care home?

There are several factors to take into consideration when choosing a long-term care home.

Location
Many people entering long-term care ideally want to stay as close to home or family as possible – but if other factors, like proximity to services or availability, are more important, you may be in a facility further away. You have to determine your priorities. Once you do, you’ll have a geographical radius within which you can make your decisions.
Eligibility
Eligibility requirements for long-term care facilities differ depending on the people to whom they provide services. Facilities determine if you’re eligible based on things like age, your medical needs, and their capabilities.

Availability
There’s a strong possibility that a room/bed won’t be available right away – particularly in public long-term care facilities. When that’s the case, you will be put on a wait list.

Wait times for public facilities by province/territory

Wait times are specific to individual homes and may not be collected by area or province/territory. If there is a wait time, you will be kept in the hospital or in short-term care until the bed in long-term care is available or alternate arrangements are made. Temporary home care may be necessary if the wait times are months-long.

Some provinces and territories do share the wait times for public long-term care.

Cost
Another big consideration when choosing a long-term care home is cost. Public long-term care facilities receive government funding that covers most of the costs associated with the medical and personal support part of care. Residents are responsible for accommodation costs. Accommodation costs commonly cover room and board.

For average long-term care costs per month per province, please find your province or territory on this resource list.

Make a budget

Long-term care costs a certain amount each month, so you need to figure out how much you can afford. Things to factor into your budgeting include:

  • Savings
  • Whether or not your family members will be contributing
  • Existing assets. For example, do you own a house you plan to sell? This money could go towards your long-term care
  • Other costs. Some things aren’t included in your long-term care – for example, hair cuts or shopping

If you want extra assistance with planning, contact a financial planner or advisor. You can ask a family member or friend for support in the process.

What will insurance cover?

General insurance plans do not cover long-term care. You should speak with your insurance provider about the coverage you do have. Long-term care insurance policies are available in Canada but cannot be purchased and used after the brain injury has occurred.

Subsidies

In some areas, if you cannot afford basic accommodation costs, you may be eligible for subsidies from the government.

Are there additional costs?

Long term care facilities may have optional or additional products and services that are not covered by the accommodation fees. These will differ from home to home, but some examples include:

  • Personal hygiene services like haircuts
  • Personal products you want outside of the ones offered by the home – i.e. a particular brand of shampoo or toothpaste
  • Extra entertainment options outside ones provided by home – private telephone, television, etc.

When speaking with a potential long-term care home, make sure to ask about exclusions when you discuss the accommodation rate.

Reputation
It’s important to collect information about the long-term care facilities you’re interested in so you can feel confident in your decision. You can ask professionals in the health community about long-term care facilities. You can also ask to speak with current residents with brain injury. Ask about their happiness, health, and overall well-being in the home.

There is some available licensing, accreditation and reputation information for provinces/territories.

Staff
The staff at the long-term care home will be a big part of your life. As such, you should feel comfortable and safe with all the staff. Ask to meet with staff who would be involved in your care. This includes nighttime staff. Have a list of questions ready that covers the following areas:

  • Their work experience and education
  • How they would handle certain behaviours
  • How they would make sure you feel respected and valued
  • How they and the home provide a positive environment
Environment
You want to make sure that the long-term care home is a safe and positive environment for you. Ask for a tour of the long-term care home for yourself or a friend/family member who is acting on your behalf. We’ve created a comprehensive list of questions to ask when selecting a long-term care home.

  • Do they have everything needed to address the individual’s medical needs? Make sure to check if they have access to each therapy
  • What physicians work with the home?
  • Can rehabilitation therapists that work outside the facility come to continue treatment?
  • Is there a safe outdoor area?
  • How are emergency paths and exits identified?
  • Is there a policy for physical restraints?
  • What are the rules surrounding family visits?
  • Are family members able to stay overnight in extenuating circumstances?
  • What supports are in place for family members?
  • How are meals served?
  • Are there assistive programs for those who need help eating?
  • Can we bring in our own food?
  • What kinds of activities are there?
  • Are there people who can help with appropriate social interaction?
  • Are there any scheduled outings?
  • If a person isn’t easily able to leave their room, are activities brought to them?
  • What is the cleaning schedule?
  • Are there washrooms in every room?
  • Are any bathrooms shared?
  • What furniture is provided by the home?
  • What is allowed to be brought in?
  • Is there a TV, phone, Internet, etc.?
  • How is room temperature controlled?
  • Are there hair cutting services available on-site?
  • Are there any additional charges?
  • Are accommodations made for religion?