Why Siblings Are The Forgotten Caregivers

When Katie MacDonald bought a new home in Brantford, Ont., this past spring, one of her main concerns was finding a house that was suitable for her older brother, Neil.

“I was always planning a room for him,” says Katie, who doesn’t have children or a spouse. She wanted Neil to have a space where he could work on his art projects and be independent. She found a home where Neil, 40, would have his own bathroom and living room.

Neil has Down syndrome. When his siblings moved away, he stayed with his parents. “We looked out for each other as siblings do,” Katie says of her relationship with her brother growing up. “There was nothing special around that.”

But now their relationship looks different. Their parents are in their 70s, so Katie, 38, has become more involved in Neil’s daily life, driving him to his work, volunteer work and social activities. Shortly after Katie purchased her house in 2022, her mother was diagnosed with breast cancer. Soon, Neil was spending half the week at his sister’s house.

Growing up, Neil, Katie and their brother participated in the same activities, like downhill skiing and bike riding. Neil attended the same high school as Katie; they crossed the stage together at graduation.

“I don't want to say we didn’t talk about it,” Katie says about her family’s attitude toward Neil’s disability. “But we didn't want to label it and then give it any kind of special treatment.”

During high school, Katie interviewed Neil and mother for a school project about Down syndrome. It was the first time she’d openly discussed her brother’s disability with her mother. “That was my first exploration of starting to wrap my head around the fact that my story may be completely interwoven with Neil for the rest of our lives,” she says. “I didn’t know what that meant. I just knew we would be close.”

In 2018, Katie started having intentional conversations with her parents about what Neil’s life would look like when he gets older. It wasn’t easy. While her parents had long advocated for better support for people with Down syndrome, the family hadn’t really discussed what Neil’s future would look like when his parents got older.

“They did want me to have my own independent life,” she says. Her parents never assumed that she or her brother, who lives with his family in Parry Sound, Ont., would care for Neil full-time. “The flipside of that is that when we don’t bring it up, it makes it harder for you to imagine planning your future life. It’s also really difficult to be the person who navigates that whole conversation with your parents.”

Her family isn’t unique. As more adults with disabilities outlive their parents, their siblings often take on more caregiving—usually without any formal support. While some organizations and advocates push for better supports for disabled adults and for their siblings to be recognized more formally as caregivers, health and social support systems still have a long way to go in reimagining who provides care—and what it looks like to live a good life with a disability.

Parents recognize they are supposed to care for their children as long as they are able to; spouses commit to spend their lives together in sickness and in health; adult children realize they’ll need to ensure their parents receive proper care as they age, whether they directly give it or not. Yet even though the sibling relationship is usually lifelong and outlasts the parent-child relationship, the experiences of sibling caregivers aren’t often acknowledged.

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“There’s an important need for sibling caregivers to be recognized or be included in conversations among caregiving,” says Dr. Yona Lunsky, a senior scientist at Toronto’s Centre for Addiction and Mental Health, who has studied the health of adults with developmental disabilities. (It’s a topic that hits close to home: Lunksy has a sister with a developmental disability.) Materials created by providers from hospitals or service organizations often assume that parents are the caregivers.

Sibling caregivers have their own needs, too. They’re often balancing their careers and families, and also caring for aging parents. In 2020, Lunsky co-authored a research article based on the results of a 2017 survey of caregivers in Ontario who have a sibling with a developmental disability. Mental health support was the second-most common need identified by study participants. Further surveys of siblings throughout 2020 indicate that these caregivers experienced high levels of worry, anxiety, sadness and guilt throughout the pandemic. COVID-19 shuttered many in-person supports and programs for people with intellectual disabilities; as siblings watched their siblings become more isolated, their worry for them increased.

Related: The Long-Term Care Issue We're Not Talking About

For many siblings, this struggle to find resources begins in childhood and continues into adulthood. A 2021 study by researchers from McMaster University in Hamilton, Ont., found that Canadian children’s hospitals and care centres have few online resources that are specifically for siblings. Sibling caregivers who are young adults are also establishing themselves and navigating new educational or work opportunities, says Linda Nguyen, now a postdoctoral fellow at McGill University and the lead author of the study.

Siblings’ caregiving duties may also increase when they’re older. While parents have decades of experience navigating complex government support systems, siblings often “have to learn overnight,” says Helen Ries, co-founder of Siblings Canada, an initiative that provides peer support and resources to help sibling caregivers. In many cases, they’re also learning during a crisis, like when their parents are ill or have died.

In May 2022, for instance, Katie left her full-time job to care for her mother and Neil. She also works for Siblings Canada, helping design the organization’s mentorship program where sibling caregivers learn from each other.

“We’re encouraging people to talk to their families over time, and not just once there’s a crisis,” says Helen Ries, co-founder of Siblings Canada.

Barriers to employment, insufficient government and social support and a lack of affordable and accessible housing already put people with disabilities at a great risk for poverty; the loss of a primary caregiver, like an elderly parent, only increases that, adds Ries.

Ries understands this well. After her parents died, she left her job and she and her husband moved in with her brother, who has Down syndrome. That’s in part why Siblings Canada launched a self-directed online course, Savvy Siblings, which helps sibling caregivers navigate and contribute to their disabled siblings’ financial futures.

“We’re encouraging people to talk to their families over time, and not just once there’s a crisis,” says Ries.

The Canadian Revenue Agency has also recognized the importance of recognizing siblings as caregivers. In 2008, Canada became the first country to offer a Registered Disability Savings Plan (RDSP). This investment account is designed to provide financial security for people with disabilities—in particular, it enhances the ability of family members to plan for a disabled relative’s financial future and allows parents to ensure their disabled children are provided for after they die. The federal government contributes grants and bonds to each account based on a family’s net income and the amount the account holder contributes. While helpful, RDSPs are governed by an incredibly complex web of government rules. “They are so complex that there is often confusion about the rules even among the banks and financial institutions that administer these savings instruments,” the CRA’s disability advisory committee wrote in its 2022 annual report.

In that same report, the committee recommends that siblings be legally allowed to open, contribute to and manage RDSPs for siblings who aren't able to manage them independently because of developmental or intellectual disabilities.

“Individual financial security may be jeopardized when an RDSP plan holder, such as a parent, passes away and there is no other qualifying family member,” the report says. “Should this happen, the person would need to have a guardian appointed or leave their RDSP unmanaged indefinitely.”

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Melissa Ngo has been talking to her family about her brother’s future for years. Every few months, 34-year-old Ngo, her parents and younger brother, Scott, 33, discuss possibilities for Scott’s future. Scott, her only sibling, is autistic—something he allows his sister to share. He lives with his parents for now, but the whole family is considering where he may choose to live in the future. They’re not sure what he’ll choose, but the family wants to be open to what is best for him—whether that’s living on his own with support, having roommates or living with family.

Scott frequently stays in Melissa’s downtown Toronto condo, a 30-minute drive from their parents’ home. “I’ve always wanted to stay in Toronto for that reason,” she says. “I don’t always feel comfortable with the idea of leaving them for long periods of time.”

Her experiences inform her role as a family support specialist at Holland Bloorview Kids Rehabilitation Hospital in Toronto. There, Ngo helps organize an annual workshop for siblings and helped develop the hospital’s SibKit, workbooks for siblings that explain what different diagnoses mean while giving siblings a space to write about how they’re feeling and ask questions about their siblings’ care and future.

Now, she worries more about social systems neglecting her brother. According to 2017 data from Statistics Canada, 28 percent of adults between the ages of 25 and 64 who have severe disabilities live below the poverty line. Provincial and territorial social assistance rates don’t provide enough to cover living costs; community support for accessible, affordable housing can be sparse. “It tells me that the government doesn’t value people with disabilities,” Melissa says. “I worry that my brother won’t get the funding support that he needs [now].”

Research has found that siblings of children with disabilities have greater chances of struggling with anxiety. That’s one reason Carrie Costello and her husband want all their children to be able to talk about how disability affects them. Costello, who lives in Winnipeg, has three daughters; her middle daughter, age 11, has a profound intellectual disability. Her middle daughter’s relationships with her siblings are “going to be the longest relationships she probably has in her life, longer than me and my husband,” she explains. “If we don’t start supporting them, and thinking about how they can be supported, and how they can support their sister, I feel like we’re really missing out.”

“She’s always going to be a priority to us—and it’s not just because of her special needs. It’s just because we’re her family,” Emma Felices-Costello says about her sister.

Her oldest child, Emma Felices-Costello, 15, first attended a workshop for siblings when they were six. They also used to attend monthly Sibshops at the SSCY Centre, the Specialized Services for Children and Youth, an initiative supported by the Manitoban government that provides support for children with disabilities and their families. These events give younger siblings of children with disabilities opportunities to play together and sometimes talk about their sibling experiences.

Emma occasionally watches their sister for their parents. Their sister has limited language and often communicates by pointing, so their family has to watch her body language closely to understand her.

“Sometimes it’s tricky,” Emma says. “She needs a lot of help, which is totally fine. Just because her needs are higher than what me or my other sister may need, it doesn’t mean that it’s always hard. I don't think it’s a burden that she’s my sister.”

“She’s always going to be important,” Emma adds. “She’s always going to be a priority to us—and it’s not just because of her special needs. It’s just because we're her family. We’re gonna be there for her and we’re gonna always love her.”

Back in Brantford, Katie and Neil MacDonald are forming new routines in the home their family calls “Katie and Neil’s house.”

“It’s really become our house,” she says. The two siblings assembled furniture and painted rooms together. They have desks next to each other in the office. They want Neil to “feel like a roommate, and not just a person who needs care,” Katie explains.

Katie, alongside her parents, helps Neil get to his job at a community kitchen. She found a program nearby for adults with developmental disabilities that he walks to and attends weekly. But he also makes her breakfast sandwiches and helps with chores. They ride bikes and rollerblade together. It’s fun, but she wishes there were more community programs for adults with disabilities. “I do feel like his life would be richer if he had more peers and someone else to do some of the community stuff with,” she says.

But the past few months have helped Katie better understand why her parents hesitated to discuss Neil’s future with her. “They were hopeful and optimistic, and worked hard to try to create a world where, as a sibling, I wasn’t needed to be a caregiver for my brother,” she says. “I’ve realized that I hold that same optimism. I want more for Neil than what the story has been so far.”