NO ONE WALKS ALONE, WE WALK WITH YOU
In 2012, approximately 11 million (38%) Canadians aged 15 and older had at least one immediate or extended family member who had a mental health problem, defined as problems with their emotions, mental health or use of alcohol or drugs. About 1 in 5 (22%) Canadians had more than on immediate or extended family member with a mental health problem – Source: Statistics Canada, Health at a Glance, October 2012
75% of care is provided by unpaid caregivers, which equates to approximately $26–$72 billion in unpaid work per year. This reduces costs to healthcare systems, reduces pressure on home and community care services and allows individuals to receive the care they need in their own homes. It is clear that without caregivers, Canada’s healthcare and social systems would collapse – Source: Caregiving in Canada: Petro Canada Caremakers Foundation Some facts regarding caregiving in Canada –
8+ million Canadians are caregivers that provide the equivalent support of 2.8 million full-time paid care providers each year – Source: Canadian Caregiver Summit, November 2023
The Mental Illness Caregivers' Association (MICA) believes more needs to be done to ensure people living with mental illnesses and/or substance use disorders have access to a safe place to live while allowing them to make choices that meet their needs and personal wishes
Based on what we heard, we propose a caregiver-focused approach … click here for more
The challenges are significant: affordable housing is extremely hard to come by, is hard to maintain for people living on the margins, there are few new listings, the average rental is too expensive, demand outstrips supply because there are many unhoused and untreated people, waiting lists are interminable, and funding is inadequate.
The last year or so, we invited caregivers to share both their stories and their concerns regarding the need for sustainable housing options for those they care for - based on what we heard, we propose a caregiver-focused approach including a third-party resource that supports caregivers planning for the housing needs of those they care for – now and when they are gone !
What is at risk? - the collapse of supports critical to the mental and physical well-being of those we care for!
As the current mental illness caregiver community ages, most would agree that it is becoming increasingly more urgent to plan for "when they are gone" … click here for more
As the current mental illness caregiver community ages, most would agree that it is becoming increasingly more urgent to plan for “when they are gone” In many cases, the caregiver is the only source of supports and without a plan going forward now and for when the caregiver is gone, our most vulnerable are at risk of increased: 911 calls, visits to ER, hospitalizations, substance abuse, isolation and loneliness, food insecurity, homelessness, contact with the law, arrest, and incarceration.
OUR ASK - We invite you to engage in a dialogue focused on doing what we can to ensure all caregivers caring for persons living with mental illness and/or substance use disorder have a housing plan
Let us get things started by asking you to share your comments regarding the proposed caregiver-focused approach … click here for more
Let us get things started by asking you to share your comments regarding the attached and as summarized below:
Establish a third-party resource that supports caregivers in the development of a housing plan and its implementation when the caregiver is gone including planning focused on:
What next - it is now more urgent than ever for the Ministries of Municipal Affairs and Housing, Health and Long-Term Care and Children, Community and Social Services to work together to ensure all caregivers have a housing plan that addresses both current and future housing needs of the most vulnerable in our community
Based on the response to our ask we will prepare a report based on what we heard and seek the support of the Ministries of Municipal Affairs and Housing, Children, Community and Social Services and Health and Long-term care … click here for more
Based on the response to our ask we will prepare a report on what we heard and seek the support of:
A Third-party resource with a mandate to support caregivers caring for persons living with mental illness and or substance use disorder planning for - now and when they are gone
A mandate that provides those they care for continuing access to safe and secure housing and on-going personal supports
Knowledge management
Supporting efforts among selected partners directed at identifying evidence based best practices in support of persons living with a mental illness and/or substance use disorders
Crisis management
Establishing a network of ‘first response’
Partnerships, collaboration and integration
Supporting efforts focused on partnerships, collaboration and integration
Awareness, understanding and empowerment
Ensuring all concerned understand and are aware of the needs of and challenges being faced by caregivers and those they care
Supporting documents:
For a more detailed discussion of the proposed mandate click here
Seeking the support of our community ….
We reached out to several organizations in our community asking them to consider entering into a collaborative partnership with us as we advocate for the support and participation of the provincial government
Links to other initiatives ….
Going forward our intent is to link our efforts to initiatives focused on the inclusion of caregivers in the circle of care as essential care partners and as formally recognized through a caregiver identification (ID) tool
We would welcome your comments and your support as we all do what we can to support caregivers planning for when they are gone
Supporting documents:
“Thinking about what will happen when I am gone keeps me up at night!”
The Mental Illness Caregivers Association (MICA) believes more needs to be done to support caregivers caring for persons living with mental illnesses and/or substance use disorder to plan for when they are gone or no longer able to provide the required supports.
“What is at risk if nothing is done?”
In many cases, the caregiver is the only source of supports and without a plan in place now our most vulnerable are at risk of increased 911 calls, visits to ER, hospitalizations, substance abuse, isolation and loneliness, food insecurity, homelessness, contact with the law, arrest, and incarceration in the future. The challenges are significant: as the current mental illness caregiver community ages, it is becoming increasingly more urgent to plan for “when they are gone”
Caregivers want ….
A plan that ensures a safe place to live and continued mental and physical well-being for those they care for
The Path Forward
A caregiver-focused approach including a process in place supported by an organization with the mandate and resources to assist caregivers in the development of a sustainable plan that provides for continued access to safe and secure housing as well as community, personal, legal, financial and property management supports.
It’s more than planning
It’s also access to services and programs, shared and collective expertise, crisis management and a network of ‘first response’. It’s partnerships, collaboration and integration, along with raising awareness, understanding and empowerment of caregivers
“Let’s get the conversation started!”
“DID WE GET IT RIGHT?” - To answer that question, we invited a caregiver to share their family’s story. To learn more click here …
The person I care for is 35 living with mental illness for over 15 years (schizophrenia and anxiety), living at home, no recent hospitalizations. Living with symptoms that include disorganized thinking, paranoia, delusions, hearing voices, anxiety, fear.
MICA: What does your caring role mean to you?
Caregiver: Where to start? To be honest, we have rarely taken the time to reflect on what care we do to support our family member – the last 20 years or so we simply just did what was required. But here goes! … click here for more
Caregiver: Where to start? To be honest, we have rarely taken the time to reflect on what care we do to support our family member – the last 20 years or so we simply just did what was required. But here goes!
For us, it began with making the 911 when our family member was in crisis. We were there in the emergency room and when admitted we assisted our family member in understanding the need for a mental health assessment, the diagnosis and the treatment plan. It was also about being there to address concerns and offer support including visits to the hospital and consults with health care professionals.
We were there to support our family member on discharge and help them integrate back into the community by developing goals and accessing the proper supports and services
We soon learned that wasn’t the end of our role. We continue to provide day to day supports from being a good listener, to providing words of encouragement and if required, someone ready to advocate access to treatment. We are there to assist our family member in ensuring continued access to mental health programs and services including arranging appointments and ensuring compliance with any follow-up actions. We are also there to monitor self-care from good hygiene practices to regular visits to health care professionals – medical doctors, dentists, optometrists and so on.
MICA: Has it been more than a caring role – what challenges has your family faced along the way?
Caregiver: Our family member was involved in an incident … click here for more
Caregiver: Our family member was involved in an incident that required contact with the law and we found ourselves supporting our family member in working through the judicial system. If contact with law was not enough, over the years, we have also paid out credit card debt on more than one occasion.
MICA: What other supports do you provide?
Caregiver: For us, over the years it is also about: … click here for more
Caregiver: For us, over the years it is also about: providing for safe and secure housing including property management as well as access to services such telephone, internet and utilities (water and hydro) as well financial and legal services from accounting advice to managing their RDSP to filing their annual tax return. Being there to celebrate special occasions from birthdays to holidays and whatever else can be done to address the loneliness and isolation faced by our family member.
MICA: The support you provide is at what cost?
Caregiver: My best estimate of the cost …… click here for more
Caregiver: My best estimate of the cost we have assumed over the years follows:
MICA: One last question – what would your plan for when you are gone need to include?
Caregiver: My plan would include … click here for more
Caregiver: My plan would include arrangements to support our family with the following:
Visits to the ER and hospitalization - assisting my family member to prepare an emergency response plan and in an emergency assisting my family member in understanding need for a mental health assessment, the diagnosis, and the treatment plan.
Contact with the Law - support to divert my family member from the justice system toward the mental health court and services in the community.
Day to day supports - someone being there to address concerns and offer support including wellness checks, social and community connections, leisure and recreation programs, psychoeducation, system navigation.
Annual legal and financial review - assisting my family member in accessing and understanding provisions of caregiver estate instructions including financial arrangements in place to fund both current and long-term expenses while ensuring the appropriate controls are in place.
Annual property management review - assisting my family member in accessing property management services – both routine and emergency services as well as the periodic appraisal of the home. And, if necessary, manage the sale of the home and arranging for alternative living arrangements
Please share your comments/thoughts with us and then click SEND