Participatory research
Finding the right support for people with disabilities
February 6, 2024
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![[A group of researchers and students in Mozambique]](/gazette/sites/gazettewww/files/styles/xxlwebp2x3to2/public/2024-02/Untitled%20-%202024-02-06T143233.769_0.jpeg.webp?itok=77KeNgQJ)
Canada Research Chair Heather Aldersey with SSHRC Partnership Grant project implementing partner Cesaltina Gertrudes Artur, Sofala Province Directorate of Gender, Children and Social Action (in pink), visiting community-based rehabilitation fieldworkers in Mozambique, in December 2023.
People with disabilities and their families rely on a range of supports to help them navigate a world that too often fails to prioritize or even consider their needs. These include formalized assistance provided by paid support workers as well as typically unpaid support from friends, family or other members of the community. Heather Aldersey, Canada Research Chair in Disability Inclusive Development and associate professor at Queen’s University, is working to understand the role of what she calls natural support in the experiences of those with disabilities, and how different sources of support can be balanced to meet the unique needs of every family.
“What makes it challenging is that there’s no one-size-fits-all approach,” says Dr. Aldersey. “Every family has different needs, and those can vary over time, or even by the day.”
Support comes in many forms
Dr. Aldersey’s research differentiates between formal support and natural support. As an example, she cites someone who needs daily assistance taking the bus to work. Formal support might involve a personal support worker escorting the person there and back. Natural support might involve a neighbour with a similar schedule and destination taking the same bus to ensure the person gets where they’re going safely.
But Dr. Aldersey notes that the distinctions are not always clear-cut. Some forms of support are harder to categorize as one or the other, and the terms and their definitions are not universally agreed upon.
All her research uses a participatory approach that centres the needs of the communities she works with. Instead of starting with a predetermined research agenda, Dr. Aldersey consults with people with disabilities and their families to find out what questions they want answered. Then, in many cases, much of the research is carried out by the communities, with guidance and support from Aldersey and her team. That approach is what led Dr. Aldersey to explore natural support, with participating families looking for answers that existing research wasn’t providing.
“There’s a lot out there about formal support,” she says. “But much less about what kind of community-based models are working well, and what the impact is of personal relationships.”
One approach Dr. Aldersey is exploring is Personal Support Networks, such as those facilitated by the Planned Lifetime Advocacy Network (PLAN). PLAN works with families to help them define what a good life looks like, think beyond professional services, and get the natural support they need to achieve their goals and priorities.
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Canada Research Chair Heather Aldersey (far left) with two Queen’s University School of Rehabilitation Therapy colleagues, Nicole Bobbette (centre) and Afolasade Fakolade (far right), at the Canadian Caregiving Summit, hosted by the Canadian Centre for Caregiving Excellence, in Ottawa, in November 2023.
Bridging the gaps in the formal support network
The research gap on natural support is mirrored in policy infrastructure. Families have observed that governments and other organizations typically recognize the importance of supports for people with disabilities, and they even offer financial assistance to access them. But that assistance is usually heavily weighted toward formal supports, even if that’s not what families want, and it’s often subject to strict eligibility criteria that put it out of reach for some families.
“Even when they are eligible, they can sometimes run into other issues, like worker shortages,” Dr. Aldersey says. “The funding might be there, but if there are no personal support workers available, the service is effectively inaccessible.”
While family and friends will often step in to fill the resulting gap, the funding assistance doesn’t apply to them. That can lead to personal financial difficulty if they have to take time away from work to support their loved one – a situation that is largely ignored in most policies.
The push for a national caregiving strategy
Dr. Aldersey recently spoke on this issue at the Canadian Caregiving Summit, held in Ottawa in November 2023, part of a growing movement seeking the development of a national caregiving strategy that would better balance the need for both formal and natural supports. She hopes her research will lead to policy changes that facilitate a more nuanced consideration of support needs.
Another innovative model her research has examined is the Microboard, a highly formalized form of natural support where friends and family establish a not-for-profit organization whose sole purpose is to support their loved one. This provides legal recognition of the role of a person’s natural supporters and, in some jurisdictions, even allows for the Microboard to receive financial assistance.
Dr. Aldersey is also looking beyond Canada’s borders. Through a recently launched SSHRC-funded Partnership Grant, she will be working with people with disabilities, families, community advocates and researchers in Bangladesh, England, Ethiopia, Guatemala, Mozambique and the United States. Each local project will use a similar participatory, community-based approach to explore issues related to support for people with disabilities and their families in their respective contexts. She hopes the project will enable a valuable exchange of ideas and best practices that could benefit all – those with and without disabilities.
“One of the really important lessons we’ve learned is that natural support is not a one-way relationship,” she says. “When we create more connected communities where we care for one another and are cared for in return, that benefits us all.”
This article originally appeared as part of the Social Sciences and Humanities Research Council of Canada's Impact Stories series.
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