We're making big plans!
2021-2024 Strategic Plan
Sometimes the best thing to do is to stop. Take stock. Consult with others. Do some out-of-the-box thinking and make a new plan.
That’s what we are doing at March of Dimes Canada. This year our organization is turning 70! The world we started out in couldn’t be more different from the world today. Many more people are living with disability and the concept of disability has evolved, moving from a medical model to a social one. Technology has changed how we think and act, making it easier to find information and connect with others. Social norms are different. Frankly, the bar has been raised and we expect more out of life, no matter who we are.
In the spring of 2020, as COVID-19 turned the world on its head, our Board of Directors recognized it was a perfect time for re-invention and approved the development of a
three-year strategic plan. To be made public in July 2021, our new plan will affirm our collective vision, purpose, areas of focus and strategic directions.
To write a meaningful plan, we knew we needed to open ourselves up to the thoughts, opinions and experiences of others. It is essential that we understand what it is to live with disability today and what the future should look and feel like. What are the roles and roadblocks? What solutions should be explored as we work together to bring about tangible, positive change?
We launched a broad-reaching consultation process. We gathered information and listened to people of all ages and backgrounds from across the country to hear about what matters to them and how we can help.
Research Results: You spoke and we listened
In the summer and fall of 2020, March of Dimes Canada launched a consultation process of current and prospective clients to ensure we had an understanding of the unique experiences and needs of people living with disability in Canada. The idea was to identify the key challenges, roadblocks, gaps and opportunities that must be considered in order to guide our work supporting the creation of a more inclusive society. We conducted one-on-one interviews and offered online surveys – one survey for our clients and another for the public, our stakeholders and others.
Who was involved in our client research?
Quantitative research: Our online survey was completed by 859 clients (104 with assistance by phone).
Profile breakdown of 859 online survey of clients:
Youth and young adults (up to 24) 4%
Qualitative research: We conducted an online forum and telephone interviews with 48 clients.
Methodology
Data Collection Method
A hybrid online and telephone survey with MODC clients, prospective clients and their caregivers.
Sample was provided by MODC.
Sample Size
859 completes
- 755 completes online
- 104 completes by telphone
Qualifying Criteria
To participate in this survey an individual needed to:
Reside in Ontario
Self-identify as one of MODC 6 target segments:
- Youth /Young Adults (under 25) with a disability
- Adults 25-64 with a disability
- Adults 65+ with a disability
- Stroke survivor
- Parent of child with a disability
- Caregiver (but not a parent to) a person with a disability
Fieldwork
September 2 - 15, 2020
What needs and perspectives did the six groups of people have in common?
When we asked respondents to describe their experience with disability in a word, they said: Challenging, Frustrating, Complicated and Constraining.
But it wasn’t all negative. Respondents also used the words Meaningful, Happy, and Inspiring – which reminds us that living with disability has its challenges, but also its positives.
People with disabilities, and those who care for them, have many needs. But two needs rise above all others in terms of intensity and how many people experience them:
independence and
belonging.
Independence varies from person to person and can change over time. It is important to understand the goal is to live as independently as possible. For one person, it can mean being able to work and support yourself. For another person, it can mean receiving daily care, but setting goals, directing our own care plan and doing what you want to do each day.
Belonging is the feeling of being part of something and mattering to others.
What feelings are behind the need for independence and belonging?
There are common feelings leading to the need for independence and belonging that we observed in all six profiles.
Struggle with feelings of anxiety and/or depression.
Lack of sense of purpose
– Feeling insecure regarding their value to others and society.
Feeling lonely and isolated
– yearning for companionship.
Have become discouraged by people's tendency to under-estimate and exclude them.
Feel constained by the lack of control over their lives.
What were the unique traits expressed by each group of people?
Parents of children
- Are overwhelmed by the strain and stress as the caregiver role overtakes that of parent
- Have a fear of letting go
- Are determined to provide classic childhood experiences
“I fear the day I cannot care for him anymore.”
“Every minute of my life is spent coordinating services and playing quarterback.”
“No one else takes the time to understand him. He is a good communicator, even though he doesn’t speak.”
Youth with disabilities (up to 24 years old)
- Have heightened need for acceptance
- Are desperate to transition fully into adulthood
- Have a relatively strong sense of possibility
- Demand recognition of individuality
“I fear that I will not be able to live up to my family’s expectations and that I will continue to let negative things get to me.”
“I’m protected. I’ve never been challenged to try new things.”
“I feel like I am constantly being judged by others and have to work much harder to gain acceptance.”
Working aged adults (25 – 64 years old)
- Have a sense of possibility in their lives
- Seek recognition of individuality
“I fear failing; that I will let all of my family and friends down.”
“People make decisions about me and I am constantly trying to prove them wrong.”
“Every aspect of my life is based on a schedule… my work, my home life… there is no spontaneity.”
Seniors (65+ years old)
- Are mourning the loss of identity
- Yearn for face-to-face connection
- Are struggling to adapt to changing nature of primary relationship as their spouse often becomes a caregiver
“I hate being a burden on others.”
“I am shut in unless someone comes to help me.”
Stroke Survivors
- Are mourning their loss of identity
- Are frustrated by their reduced ability to process new information
- Yearn for face-to-face connections
- Are struggling to adapt to changing nature of primary relationship
“I hate being dependent. I miss doing what I want, when I want.”
“My world has become very small.”
Caregivers
- Have no time for self care
- Are plagued by feelings of resentment and guilt
- Are struggling to adapt to the changing nature of primary relationship
- Are trying to retain or recover a sense of identity
“I fear that there will be no one to care for him when I am gone.”
“My own health is declining from the strain of looking after him.”
“It is a different relationship now. He hasn’t called me by my name for five years.”
What are the barriers that create roadblocks for people?
Most significant barriers:
Financial 36%
Employment 35%
Physical 30%
Transportation 30%
Service 24%
Social 23%
Communication 22%
Attitudinal (stigma) 20%
Technology 17%
Education 14%
What are the gaps in services and resources?
The biggest issue is about the complexity of the system with no clear roadmap to guide people. There are gaps between services and organizations. Even at March of Dimes Canada, our clients may not have equal access to our programs and services.
- More
person-centered, integrated experience accessing needed services/resources
- Support in
navigating a challenging and fragmented disability support “system”
-
“Real-time, on-my-terms” access to services/support, including transportation
-
Emotional and social support, including mental health services and counselling
- Access to
technology and education about it
How significant is stigma?
Seventy per cent of the people we surveyed said society’s attitudes toward people with disabilities limit their opportunities.
“[People need] to know how to talk to people with disabilities with respect and comfort. To not avoid, ignore, fear or look down at them.”
“[People] treat me like I am totally disabled or an invalid and must have everything done for me. I have had people come up and start cutting the meat on my plate…”
What is the role of technology?
Generally speaking, those we spoke to embrace technology as a way to be more independent and to level the playing field.
Among all types of technology, mobile devices, video calling and mobility/agility aides and devices are perceived to be of the greatest value for people with disabilities, and are the most widely used.
But, cost is a huge barrier – for purchasing tech equipment and maintaining it. Even the cost of an Internet service can be too much for many people.
Another barrier to technology is the feeling of intimidation experienced by many people. Learning new technologies is a challenge for anyone, but it is even more challenging for people who have had a stroke and seniors who didn’t grow up with technology – and for anyone who has cognitive problems.
What did your stakeholders and community partners say?
We learned that March of Dimes Canada has a great reputation among those who know us, but people aren’t aware of our full range of services. Currently, even though we have services across the country, we are thought of primarily as an Ontario organization. We need to reach out to communities across the country to build relationships, expand our program offerings and increase awareness of our scope. Technology can play a major role in enabling us to create new programs and services, and to reach more people in communities all across Canada.
We’ve also learned that advocacy on issues affecting our community would be welcomed. We need to be a government tables to monitor threats and opportunities for positive change. There is also a need to address the highly fragmented disabilities landscape we have in Canada, despite the shared desire for more holistic, client-centred care. There is openness for us to play an active role in bringing together the different players – health care, community and social services – to make the “system” less confusing and more easily navigated.
What does this mean for March of Dimes Canada’s new strategic plan?
The research has given us a deeper understanding of the challenges faced by many of our clients living with disability in Canada. It paints a broad picture of how March of Dimes Canada can create remarkable change for our community. We are identifying specific issues and areas to make the biggest impact, and we are setting measurable goals and determining how best to meet them.
Our Strategic Plan Advisory Committee
At March of Dimes Canada, we are committed to creating a more inclusive world. That starts with making sure our planning processes include the thoughts and opinions of people from a wide range of backgrounds. Their varied perspectives, experiences and expertise are guiding and informing our decisions throughout the plan development process.
Specifically, we created an advisory committee made up of people with lived experience of disability, including clients, caregivers and family members, as well as experts and thought leaders in the disability, government, health and community services sectors. They work with March of Dimes Canada leaders, including members of the Board of Directors, Executive Leadership team and Senior Management Team to provide guidance and counsel regarding the design and development of our new strategic plan and related outreach and activities.
Strategic Plan Advisory Committee Members
- Marissa Blake, Client Advisor and Champion
- Emily Chan, Client Advisor and Champion
- Steve Estey, Client Advisor and Champion
- Wesley Magee-Saxton, Client Advisor and Champion
- Scott Allardyce, Senior Policy Advisor, Ministry for Seniors and Accessibility, Ontario
- Stephan Cull, Founder of CharterAbility
- Vim Kocchar, Former Senator and Chair of The Canadian Foundation for Physically Disabled Persons (CFPDP)
- Wendy Porch, Executive Director, Centre for Independent Living in Toronto
- Keiko Shikako Thomas, Assistant Professor at McGill University, Pediatric Occupational Therapist and Canada Research Chair in Childhood Disability: Participation and Knowledge Translation
- Jutta Treviranus, Director and Professor at Inclusive Design Research Centre, OCAD University
- Dr. Reg Urbanowski, Dean, College of Rehabilitation Sciences, University of Manitoba
- Jennifer Weir, Independent Consultant
- Elizabeth Lounsbury, Member of March of Dimes Canada Board of Directors
- Jay Hira, Member of March of Dimes Canada Board of Directors
- Wendy Kauffman, Member of March of Dimes Canada Board of Directors
- Len Baker, President and CEO, March of Dimes Canada
