Concern about the mental health of a brother or sister with a developmental disability was the most pressing issue for over half of 360 Canadian siblings who completed a survey by the Sibling Collaborative released in March. “People with developmental disabilities are three to four times more likely to have depression and anxiety than the typical population,” says co-author Helen Ries. “As life goes on, and they face more adversity—such as the death of their parents, and changing living situations—it’s not lost on their siblings that mental health is an issue, and there are very few resources to support them.” Two years ago, Helen wrote a piece for BLOOM about her own experience having her brother Paul come to live with her and her husband after the death of their parents. We spoke about the findings of the survey.
BLOOM: Do you think siblings identified depression and anxiety in their brother or sister as the top challenge because they know the statistics, or because it’s something they’ve experienced in real life?
Helen Ries: I think they’ve seen it in real life. When you have a brother or sister who has faced discrimination, harassment, and, potentially, even abuse their whole life, you know there’s going to be some kind of negative outcome on mental health.
We asked about 13 different challenges, and we didn’t expect mental health to come out as number one. But I don’t want to forget the mental health of parents. That was rated second. As brothers and sisters, you watch your parents deal with so much over a lifetime. One respondent talked about how her parents were in their 90s and still looking after their adult child.
BLOOM: I know Yona Lunsky at CAMH is studying which interventions reduce depression and anxiety in parents. Almost half of your respondents said getting emotional support for themselves was a challenge.
Helen Ries: Every sibling journey is different, and it depends on at what juncture they might need that support. For example, in my case I was faced with the death of my parents and transitioning to sudden caregiving. You have your own grief, and you have the added anxiety of trying to learn in two to three months what your parents learned over 40 or 50 years. The expectation is that you will continue to support your brother or sister in the same way your parents did. You go to Developmental Services Ontario and say ‘My brother is alone in the world, what can we do to best support him?’ and that crisis point doesn’t trigger anything. I think we need to be supporting the mental health of siblings early on, and it should be part of programming.
BLOOM: Housing was listed as a top need for 60 per cent of respondents. How can you respond to that when in Ontario, the wait for a group home is over 20 years?
Helen Ries: Everybody knows that housing and financing paid support are huge issues within the disability community. What’s heart-wrenching is that this is problematic over generations. As part of our survey, we asked ‘Where is your brother or sister living?’ In early adulthood, it’s not a popular choice, which is understandable, because it’s not easy. But we noticed there’s a jump in later years when they are living together—and that speaks to the fact that there really aren’t other options. There comes a point, related to the aging of parents, where housing becomes a potential crisis.
BLOOM: For people who need 24-7 support, everything really falls on the parents to create something.
Helen Ries: I think it’s because there aren’t a lot of options, and there is a lot of judgment and criticism around different choices. We’ve been criticized for choosing to live with my brother. It’s difficult for families when you face criticism. It can lead to a lot of second-guessing.
BLOOM: In terms of getting information to help them, siblings in your survey said friends and family were their top choice. But you note that in focus groups, you learned parents don’t share information with siblings.
I wanted to comment, as a parent, on why that may happen. I came to Holland Bloorview in 1999, and for the next decade, I went to all of our sibling workshops. The advice we got was to make future plans for the child with disability, independent of siblings, so as not to place anxiety on siblings. But the reality is that with no public housing and funding shortages, it’s impossible to make a plan like that. So in my case, as my son got older, I went silent. I didn’t want to harm my other children by telling them there was no plan, so I just didn’t say anything.
Helen Ries: I don’t think you’re unusual. Parents feel guilty and confused and they don’t have a lot of choices. In our family, my parents wanted me to have my own life. My dad had a plan that I was not involved in creating, but there are very few parts of that plan that still stand today. I think that’s because life is so dynamic and things change. This discussion in families has to happen over a lifetime. It needs to be ongoing and dynamic and include siblings. As a family, what kind of life does my family member want, and how can we support that?
BLOOM: I think there are siblings who naturally want to play a big role, but for others, for many reasons, they may not be able to. What happens when a sibling says no?
Helen Ries: Well, at least you have the information you need. What you said is really important—for some siblings it comes naturally, and for others it doesn’t, and that’s why every sibling pair is on their own journey.
I know it would be very hard to have these conversations. When parents come to chat with me, I see that instead of enjoying life day-to-day, they’re so worried and stressed about what’s going to happen that a lot of joy 'now' is lost.
PLAN in Vancouver is doing a lot around developing a future planning tool. You may not be able to do all of the parts, but maybe you can do one part. For example, my parents got the RDSP stuff right and the Henson trust stuff right, even though they weren’t able to solve the housing problems for me. That helps me to fill the duty I have now.
BLOOM: Sixty-five per cent of respondents said they’d like an online website with information that could help them.
Helen Ries: There are some areas in which we can provide support. For example, in helping siblings build resilience, which is the mental-health piece. How do you have a creative mindset to help you with problem-solving? Or maybe in sharing ideas from siblings who have found solutions. Our collective is based on contribution and collaboration and is an asset-based perspective. We want to lend our experiences and ideas to other organizations, to build their capacity around the sibling issue. This doesn’t have to be housed within the disability realm. This is a huge issue. It’s a gender issue—mostly affecting women. It’s a poverty issue. It’s a homelessness or housing issue.
Helen will be discussing key findings of her report with co-author Eric Goll and CAMH psychologist Yona Lunsky in a PRP webinar on May 14. Two recommendations are to create a national survey, as this survey had a majority of respondents from Ontario, and a national conference for Canadian siblings in 2019. The third author on the survey is Becky Rossi. You can join the collaborative on Facebook.
BLOOM: Do you think siblings identified depression and anxiety in their brother or sister as the top challenge because they know the statistics, or because it’s something they’ve experienced in real life?
Helen Ries: I think they’ve seen it in real life. When you have a brother or sister who has faced discrimination, harassment, and, potentially, even abuse their whole life, you know there’s going to be some kind of negative outcome on mental health.
We asked about 13 different challenges, and we didn’t expect mental health to come out as number one. But I don’t want to forget the mental health of parents. That was rated second. As brothers and sisters, you watch your parents deal with so much over a lifetime. One respondent talked about how her parents were in their 90s and still looking after their adult child.
BLOOM: I know Yona Lunsky at CAMH is studying which interventions reduce depression and anxiety in parents. Almost half of your respondents said getting emotional support for themselves was a challenge.
Helen Ries: Every sibling journey is different, and it depends on at what juncture they might need that support. For example, in my case I was faced with the death of my parents and transitioning to sudden caregiving. You have your own grief, and you have the added anxiety of trying to learn in two to three months what your parents learned over 40 or 50 years. The expectation is that you will continue to support your brother or sister in the same way your parents did. You go to Developmental Services Ontario and say ‘My brother is alone in the world, what can we do to best support him?’ and that crisis point doesn’t trigger anything. I think we need to be supporting the mental health of siblings early on, and it should be part of programming.
BLOOM: Housing was listed as a top need for 60 per cent of respondents. How can you respond to that when in Ontario, the wait for a group home is over 20 years?
Helen Ries: Everybody knows that housing and financing paid support are huge issues within the disability community. What’s heart-wrenching is that this is problematic over generations. As part of our survey, we asked ‘Where is your brother or sister living?’ In early adulthood, it’s not a popular choice, which is understandable, because it’s not easy. But we noticed there’s a jump in later years when they are living together—and that speaks to the fact that there really aren’t other options. There comes a point, related to the aging of parents, where housing becomes a potential crisis.
BLOOM: For people who need 24-7 support, everything really falls on the parents to create something.
Helen Ries: I think it’s because there aren’t a lot of options, and there is a lot of judgment and criticism around different choices. We’ve been criticized for choosing to live with my brother. It’s difficult for families when you face criticism. It can lead to a lot of second-guessing.
BLOOM: In terms of getting information to help them, siblings in your survey said friends and family were their top choice. But you note that in focus groups, you learned parents don’t share information with siblings.
I wanted to comment, as a parent, on why that may happen. I came to Holland Bloorview in 1999, and for the next decade, I went to all of our sibling workshops. The advice we got was to make future plans for the child with disability, independent of siblings, so as not to place anxiety on siblings. But the reality is that with no public housing and funding shortages, it’s impossible to make a plan like that. So in my case, as my son got older, I went silent. I didn’t want to harm my other children by telling them there was no plan, so I just didn’t say anything.
Helen Ries: I don’t think you’re unusual. Parents feel guilty and confused and they don’t have a lot of choices. In our family, my parents wanted me to have my own life. My dad had a plan that I was not involved in creating, but there are very few parts of that plan that still stand today. I think that’s because life is so dynamic and things change. This discussion in families has to happen over a lifetime. It needs to be ongoing and dynamic and include siblings. As a family, what kind of life does my family member want, and how can we support that?
BLOOM: I think there are siblings who naturally want to play a big role, but for others, for many reasons, they may not be able to. What happens when a sibling says no?
Helen Ries: Well, at least you have the information you need. What you said is really important—for some siblings it comes naturally, and for others it doesn’t, and that’s why every sibling pair is on their own journey.
I know it would be very hard to have these conversations. When parents come to chat with me, I see that instead of enjoying life day-to-day, they’re so worried and stressed about what’s going to happen that a lot of joy 'now' is lost.
PLAN in Vancouver is doing a lot around developing a future planning tool. You may not be able to do all of the parts, but maybe you can do one part. For example, my parents got the RDSP stuff right and the Henson trust stuff right, even though they weren’t able to solve the housing problems for me. That helps me to fill the duty I have now.
BLOOM: Sixty-five per cent of respondents said they’d like an online website with information that could help them.
Helen Ries: There are some areas in which we can provide support. For example, in helping siblings build resilience, which is the mental-health piece. How do you have a creative mindset to help you with problem-solving? Or maybe in sharing ideas from siblings who have found solutions. Our collective is based on contribution and collaboration and is an asset-based perspective. We want to lend our experiences and ideas to other organizations, to build their capacity around the sibling issue. This doesn’t have to be housed within the disability realm. This is a huge issue. It’s a gender issue—mostly affecting women. It’s a poverty issue. It’s a homelessness or housing issue.
Helen will be discussing key findings of her report with co-author Eric Goll and CAMH psychologist Yona Lunsky in a PRP webinar on May 14. Two recommendations are to create a national survey, as this survey had a majority of respondents from Ontario, and a national conference for Canadian siblings in 2019. The third author on the survey is Becky Rossi. You can join the collaborative on Facebook.
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