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:
- At home
- In a group community with assistive care
- In a short-term care facility
- In a long-term care facility
- Renovation funding
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.
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.
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.
There are several factors to take into consideration when choosing a long-term care home.
- 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 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.
- 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.
- 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:
- 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.
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.
- 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.
- 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
- 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?