Thursday, May 17, 2018

All children have voices, if only we listen

By Louise Kinross

Bioethicist Franco Carnevale recalled the assumptions he held about families caring for children using ventilators at home, prior to launching a study of them. “Our preconceptions going in were that this was an intrusive, aggressive intervention and we needed to rethink the hardships we were imposing on these families,” he said.

Franco, a clinical ethicist, nurse and psychologist at McGill University and its affiliated hospitals, was speaking at Holland Bloorview’s Pursuit Awards.

“From our critical-care lens, we had made prejudgments about what kind of life was worth living,” he said. “We went into these families’ homes looking to create lists of hardships.”

Instead, while learning about the real challenges these families faced, they also heard about the joy in their lives. “They talked about the interplay between difficulties and rewards,” Franco said. “Parents did not want us to talk about their child’s life as a burden.”

Perhaps most interesting was the meaning that a four-and-a-half year old gave to her BiPAP machine. A BiPAP delivers pressurized air through a mask so that a child can take bigger breaths when his or her breathing muscles are tired or weak.

“My ‘pap’ makes me happy,” the child said. “I really like my pap. The pap is good because it helps me to breathe.”

Franco noted that when we think about ethics related to children living with complex conditions, we think of concerns voiced by health-care professionals. “These are important,” he said.

But we have little data based on the voices of the children living with these conditions, and their families. “So little is known about the ethical dimensions of their everyday lives,” Franco said.

He noted that historically, children were viewed as a family’s possessions, not as human beings. When their value was considered, it was in the context of whether they could make productive contributions as adults. The voices of children continue to be minimized in health care today, he said.

Franco proposed a paradigm shift from thinking about “pediatric” ethics to “childhood” ethics. “The tone of pediatric ethics suggests we are starting with the concerns of health-care professionals. What we need is a field of childhood ethics that is centred on the moral lives of children. We need to develop a new philosophy, or outlook, to understand human experiences more richly. We need to be able to understand what is most morally meaningful to children and families in their everyday experiences.”

Franco noted that an emerging “sociology of childhood” will take an interdisciplinary view of how we understand children, drawing on history, philosophy, sociology and anthropology.

The new field moves away from the “deficit orientation” of some dominant forms of developmental theory, which look at how removed the young child is from the ideal prototype of humanity—the adult.

“Children have agency,” he said. “They have the capacity to be active, moral agents who have preferences, views and outlooks on what is meaningful to them.”

Franco said the field of childhood ethics would favour qualitative approaches to understanding children’s experiences, voices and agency. “These are hard dimensions to capture through structured, measurement approaches,” he said.

Rather than a psycho-social approach to listening to children, which aims “to comfort or reassure,” Franco said, “we need to develop a way to interpret how the wishes, preferences, hopes and aspirations are ethically significant to a child.”

He noted that ethics in health is based on the idea of treatment that serves a child’s best interests. “But how do we define best interest, and who gets to define it?”

Franco said he and his fellow researchers got their definition wrong before they studied families living with children with ventilators at home. “’Best interest’ needs to be linked to what is morally meaningful to a child,” he said.

In answering a question about the notion of “giving a child a voice”—which is how the media often frames stories about voice technology—he said he doesn’t use that phrase. “All children have voices,” he said. “We haven’t been listening.”

In an e-mail exchange after his talk, he recalled working as a pediatric nurse in the 1970s, when the medical theory was that newborns didn’t feel pain. “I recall many times holding down newborns as tubes were inserted between their ribs, or catheters into their major veins. These babies grimaced and squirmed. Parents were horrified, although they rarely witnessed this, because they were forced to step out during these procedures. These babies were vividly expressing distress, but we discounted their ‘voices’ because we didn’t understand them.”

Franco says the same holds true for any child who doesn’t communicate in conventional ways. “In many situations, parents are optimal interpreters for these voices.”

Franco Carnevale is principal investigator of VOICE: Views On Interdisciplinary Ethics. You can follow VOICE on Twitter @childethics. Pictured above is Zoey Faith with Holland Bloorview nurse Joy Zergara.

Tuesday, May 15, 2018

When a child has a chronic illness, every family member adapts

By Louise Kinross

Sweet Dreams for Chiyo is a tender film about how one family copes when their toddler is diagnosed with Type 1 diabetes. Families of children with chronic health problems and disabilities are sure to see parts of themselves in it, from the mom who becomes the resident medical expert and the dad who feels unsure of his role, to the sibling who is super-helpful, but sometimes feels left out and resentful.

A reminder that a free screening of the film is being held Wed., May 16 at 7 p.m. at the Hot Docs Ted Rogers Centre at 506 Bloor Street West. I'll be part of a panel afterwards that includes the parent filmmakers and diabetes experts.

Our Canadian readers can watch the full Sweet Dreams for Chiyo documentary above. You can also check out lots of information at this website. Or read our interview with filmmaker Kaz Ehara.

Monday, May 14, 2018

Before you hit share, did you ask your kid?

By Louise Kinross

A week ago Rebecca Cokely wrote an interesting piece for Rewire.News called
On parenting and consent: When sharing isn't caring. "While nondisabled parents generally raise nondisabled kids to not let strangers touch their bodies, or not to talk about their private matters to people in public, disabled kids are taught to share everything," she writes.

Rebecca is the senior fellow for disability policy at the American Center for Progress. You may remember her, and her family, from this fabulous CNN video: A disabled, biracial (and totally normal) American family

In her recent article, she says she was planning to write a parenting piece about bullying by drawing on her son's experience. Then she asked him if that was okay, and he said no. "He was right," she writes. "It's not my story to tell."

Rebecca notes that the medical world often strips children of autonomy and privacy. For example, she writes that as a hospitalized child, she was given the message that educating medical students came before her own need to assert personal boundaries.

Rebecca suggests parents may be putting their own needs above what's best for a child when they post about a child's disability online. "When it comes to consent and disability, the internet is full of families of disabled people sharing stories, asking for tricks of the trade, and just plain venting. These exchanges walk the line from being informative to being exploitative. For every thoughtful question about what car seat works best, there are five posts of parents sharing photos of their children in various states of undress asking if an impairment or ailment 'looks normal.'"

What do you think?

Thursday, May 10, 2018

Parent hacks for finding joy

Photo of Anchel Krishna and her daughter Syona

It's Mental Health Week, so BLOOM asked parent readers to send us their strategies for finding joy and emotional resilience in the midst of lives that can have extra uncertainties and stress. The ideas and answers flooded in, and are pasted below. We hope you find inspiration in them and consider trying something new yourself. Also, feel free to post your own ideas in the comments.

What strategy do use to protect your mental health?

I paint. Oil painting. I get to control the paint or just see how it ends up. I do calming landscapes. HUGE stress reliever.

I try to have as much shared joy with our son as possible so I see how happy he is, and that improves my mental health.

So many flood my mind: breathing to slow my breath and body response, so I can think clearly. Celebrating the moments we gained vs. worrying about what's been lost. Resting into the present moment as it is, accepting it as it is, holding faith that there will be a next moment blessed.

I crochet but most importantly I talk when I need to. I don’t pretend I’m fine when I’m not, because it doesn’t do any of us good. I take meds when talking doesn’t work. I am honest and upfront about how important it is for me to be okay, as well as my husband and my child. We now are a well-oiled machine but we still need tune-ups every once in a while

I really like to read a good fiction book (mostly mysteries) and also have recently gotten back to cross-stitching after many years away from it. I’m old school and read physical books. My son, who has retinitis pigmentosa and other issues that make it difficult for him to read, loves the reader we have installed on the iPad so I might have to try it myself!

Forcing myself to get out of the house, especially to meet up with someone. Socializing with other parents in similar situations has been invaluable.

I have decided to love and care for my son as he is, knowing and accepting the fact that I cannot heal or change anything about him. This has really helped me a lot to overcome my pain and be focused.

I do something physical every morning. I walk with a friend three times a week and do boot camp three times a week. Both activities are with other people and I find the social aspect really nourishing. It helps me recalibrate. I also try to meditate daily. Silence really is golden!

Started a weight-training class three weeks ago and got a Fitbit. Trying to make healthier choices. Hopeful that being more physically fit will help my mental health too. Being a parent to a special-needs child can be all-consuming. After nine years of this, trying to carve some time out for myself.

Going for a run with the music loud enough to keep my brain empty.

Gratitude and strengths journal to counter the deficit mentality.

Yoga at lunch three to five days a week. It has helped me achieve stillness in my mind, strength in my body, and the openness to connect to those I had closed out while trying to be strong. A profound change over the past year for me.
Walk the dog at least one time a day.

Try to stay in the moment. Create memories. Do not spend your energy worrying about a negative future event that may never happen. You can plan for a thousand different outcomes, but generally this journey will take you to someplace that you had never planned on going.

We’ve used nidra yoga with families in the past, which is one of the most relaxing forms of the practice. Very effective. Parents said they felt the effects for days after.

When I take a break, I keep my mind conscious. I can't do anything about today, yesterday or tomorrow. It is going to be what it is. In that conscious mind...I dance!

Exercise every day (even if it’s 10 minutes). I took up Ukulele!!! And I participate in a “glee” competition (which just ended) every January to May for children’s charity. I make sure I have something that’s for me and scheduled, so I have to go.

I take photos of the water. I go down to Cherry Beach and find a rock I can sit on, right up against the water. The water lapping on the rocks—or making squeeking sounds when there is ice—drains my mind. I look through the viewfinder and wait, patiently, for unusual ways the water moves and patterns of light, as well as reflections in the water of the blue sky or trees. My breathing slows. I feel like I’m at a cottage. I purchased a year’s subscription to Photoshop so when I get home I can make some basic enhancements to my photos. Even the process of going through the photos and choosing the ones I like feels creative. I also make them into cards and calendars.

Playing squash, biking (sports in general, for me, keep me sane).

Giving back has been my saving grace when I'm feeling down.

Each year I make a virtual joy jar, writing down beautiful memories as they occur in my cell phone. I review my memories when I have had a rough day for a mood boost. This activity helps me keep perspective and celebrate the incredible beauty I've known in my life.

I garden. It’s my zen time. It allows me to slow down, breathe, tend to seeds and small plants in the winter. In the spring and summer it gets me outside in the sun, being physical and ripping the rewards of good food which I then preserve, freeze, cook and eat!!! I also try learning something new. This year chickens. Facebook groups like this one REALLY help with mental health and establishing community!

I embrace my faith and pray a lot. This helps me to focus every morning when I wake up, and certainly carries me throughout the day. Also, I have a few close family members and friends that I speak with on a daily basis who encourage and support me. I find this very crucial as most parents on this journey find it lonely. I was really in that place until I accepted the support of these people and opened the door for them in my life.


Adult colouring is calm and meditative.


Write. Cook. Hobbies. Make dates with friends. Connect. Take at least half an hour every day to sit still. Breathe. Take it one step at a time. Stay focused on the present.

I walk.

Bought a quad. I write too!

I joined a hiking group last winter and it made a huge difference to my wellbeing, especially dealing with seasonal affective disorder. Also doing yoga and I am starting to get into mindfulness. Volunteering and having a voice is important to me, too, and can be uplifting.

I have dear friends who live in different time zones, so even if my monkey brain or complex care needs loved one is keeping me awake in the middle of the night, I have people who love us that I can talk to if I want. Also, I keep a camera with me all the time so I can capture the precious moments of beauty when they happen, and be conscious about making memories in the sacred and mundane moments of life.

I hide food treats under my bed in a Rubbermaid container and go there when I need a mommy time-out.

Respite is important. I discovered that most parents do not utilize this opportunity, but trust me it helps a lot. On average, I schedule my son once a month to go for the weekend, and this gives a little bit of break for myself, my husband and my other children. I always try to plan something for that time, and if I don't have something planned, I just stay home and relax. Also, I travel out of the country at least once or twice a year for vacation. I am always so rejuvenated when I come back and happy to see my son with a renewed energy. I also try to connect with other parents whenever possible to share our experiences and encourage one another.

Spend 30 minutes each day in nature, or at least looking at it.

Another fun thing is hula hoop classes. I laugh so much. It's east-end Beaches. We have a fabulous instructor.

When I'm approaching mental exhaustion, I permit myself to mentally check out for a bit (on a daily basis) when it's safe to do so (i.e. when someone else is taking care of my daughter), usually in the form of escapism through mindless pursuits, such as watching campy Netflix, listening to the latest U2 album, or on adventurous days, actual exercise (motivated by the promise of really loud karaoke while on the treadmill). If the issue is how to manage anger against whatever the latest injustice is, I write out ragey e-mails (that rarely get sent anywhere), and if it's really bad, I call family or friends and ventilate out loud, to get it all out of my system. Afterwards, I'm good!

I do things that make me feel good... Meditation music, warm bath, long walks, paint night. I spend a short amount of time crocheting (I wish I had more time), massage therapy (hubby has benefits) and my sister listens well when I need to vent. And is always there whether or not she fully gets it. The only way I am able to do any of this is having a very supportive husband. We also want to get respite care. We have had only two days of overnight sleepovers in four years. My daughter is completely dependent—can’t talk walk or eat on her own. Bathroom is hard. I think we're doing this soon. My husband never gets a break other than going to work. I'm a stay-at-home mom.

Working out almost daily and playing with our dogs.

The biggest step we took was accepting that all of our love, patience and structure was not going to “fix” my daughter’s daily meltdowns and outbursts. Accepting that was much more difficult than accepting that she would not walk independently—that I was okay with. We do Botox injections, have tried muscle relaxants and dystonia meds. But it was a big step to maintaining my sanity to get chemical help for her damaged brain when it came to behaviour and emotional control. She has been pushing me further and further in to a hole where I was feeling like I had no control. Meds for her have helped.

I volunteer or colour in colour-by-number books. Sounds funny but sometimes I can't focus enough to pick colours so I do something I like without a lot of brain work. Or talking with other parents.

I try to connect with other parents who share similar experiences. We just 'get it' and it really helps. I feel immediately at home and less like the 'I don't know how you do it' person!

Art as therapy. Hoping to get a keyboard and return to piano. I'm going to buy myself an infrared massager. I speak openly when I feel safe around some friends and family.

I take a sick day when I need it.

I have started taking boot camp classes and started the Couch to 5K program. It has been a great outlet for stress and when I am not active, my mental health definitely suffers. I think it is just the act of doing something to take care of myself that helps to boost my mental health.

I try to live day to day, just doing what needs to be done, and not trying to be perfect. I call in help when I need it, and I allow myself to cry and be cranky if I need to be. Sometimes you just need to put yourself in a time out!

I work and my wife takes care of our daughter all day. One of the biggest things that helps support groups like this one (PAL). Because just reading posts like this one and seeing how relatable it is, we feel like we're not alone in this situation, a lot of people are in very similar circumstances. Thanks for sharing.

Painting and running! Through being creative you can express yourself, get out emotion, memories, thoughts or reflect on something beautiful. Works wonders for post and anxiety. If you create, write and also talk about it with others like a social worker.... Through running I can breathe, focus on goals, let go of stress, and listen to my body. Read about this parent here.

I spend time with my dog and two cats, who are always fully in the present moment and who offer unconditional love!

I attend an art journaling class twice a month.

Gardening. I turned it into a business which built my body strength. Dog walking daily, meditation. Planning a vacation yearly with my husband! Used Holland Bloorview's respite services six times minimum per year. Took all my advocating skills and struggles with this broken health care system and turned it into a more positive way of survival and created a NEW Charity foundation for York Region. HAPPINESS is having funding, overnight respite and yearly holidays. I also have a massage every two weeks to keep me grounded and balanced!

Exercise every single day.

Walking near water, painting, gratitude journaling, meditation, listening to music, reading, working out, talking to friends, sharing meals with others

Jigsaw puzzles and a social life.

I knit or curl up with a paperback novel. Old-fashioned kind. I need a break from electronic screens.

Going for a walk and reading novels.

I do Kristin Neff's five-minute self-compassion break.

I read. Fiction, non-fiction, blogposts (including Bloom of course)... anything. To be honest, I read mostly non-fiction these days so that I can have more meaningful discussion with parents of disabled children who have become close friends in a short period of time

I get into a lot of different forms of art and crafty stuff. Trying to be a better runner, I find it really meditative.

Vigorous exercise!

Walking with headphones on, playing happy, thought-provoking, or relaxing music at a ridiculous (but safe) volume!

I have a group that's specifically for [my daughter's] condition as well. It's my favorite one to read.

Epson salt baths and reggae music have saved my sanity on many days.

I get a last-minute hotel room at at a great discount and go for a night—by myself. I close the door and do whatever I want, including ordering food.

Audiobooks on my long commute. Also, I spend time with friends. Sometimes when the schedule is too busy, a phone call with a dear friend helps.

Connecting with my own spiritual practice, whether God or going to church or praying. I do a daily meditation that roots me in where I am. It reminds there's an end to every day. Good days come to an end, and bad days come to an end. I do it before I go to bed. The biggest thing for me is letting go of self judgment. I just do it as a practice. Some days are more meaningful than other days, and that's okay.

Being active. Using my body through the day. I check in with my breathing because I'm a shallow breather and hold my stress. I rely on others as much as I can—whether for practical help to cook me a meal, babysit a kid, pick something up at the store, or to talk. Some of the talking I do with people who are in similar situations. We have a big extended family support system, so I know I'm not alone. I ask for what I need from people.

Wednesday, May 9, 2018

'The people that have the voice are too tired to raise their voice'

This family! If you haven't watched the film Caring for Tor that aired on CBC The National, you must. It fits perfectly with Mental Health Week as it relates to families caring for young adults with complex disabilities and medical needs. 

Caring for Tor is told from the perspective of Stephane Alexis, 24, who has put his life on hold to care for his younger brother Torence. "He's non verbal, he doesn't really have any balance, he's completely dependent," Stephane says.

"A year ago, when Tor turned 21, he graduated from high school, and all the services stopped. So when that happened, we didn't have any support during the day and all of the work kind of fell to my dad."  

With his mother working full-time, Stephane became one of Tor's caregivers. He describes caring for Tor with his parents as being like a member of a finely coordinated orchestra.

The love and dedication in this family is boundless. But the demands are constant, round the clock, and Stephane worries about the future.

"Any kind of long, continuous strain has an impact on you mentally," Stephane says, noting that his friends are focused on their careers and chasing their dreams. 

"I can't do this forever...What will happen if I'm not there to kind of relieve the pressure? Everyone's getting older and the needs are going up and it's kind of breaking the balance. It's easy ignoring these people cause there's no voice. Because the people that have the voice are too tired to raise their voice."

The Centre for Mental Health and Addiction has an excellent campaign designed to remove stigma about mental health, and it certainly applies to the needs of this family: 'My mental health is as important as my physical health.'

Tuesday, May 8, 2018

'Take care of yourself first:' A parent's recipe for mental health

By Louise Kinross

Studies show elevated rates of depression and anxiety in parents of children with disabilities. They even show our cells age faster due to high stress.

This week is Mental Health Week in Canada. The Canadian Mental Health Association is running a great campaign called '#GetLoud about what mental health really is.' It includes descriptors like 'It's about feeling good about who you are, having balance in your life, and managing life's highs and lows.'

The Centre for Mental Health and Addiction also has an excellent campaign. It's designed to remove stigma: 'My mental health is as important as my physical health.'

BLOOM is talking to parents to learn about what they do to care for their mental health.

First up is Laura Meffen. Laura’s daughter Emily Kerr, 19, has NGLY1—a neurological condition in which people lack an enzyme that helps the body remove proteins that aren’t working properly. She has complex disabilities and health needs. 

Back in 2003, when Emily was five, Laura wrote a BLOOM piece about walking into a hospital emergency, suicidal, and being admitted for a major depression. At the time, she wrote, she felt she ‘had to live up to that super-mother image…My self-worth was tied to maintaining that image of perfection and doing everything myself.’

This year Emily, almost 20, moved into a full-time residence called Participation House. Here’s what Laura says she’d tell another parent of a child with complex needs about mental health:

“You need to put your family first, as opposed to one child. A lot of anxiety comes from wanting to do everything possible for our child with disabilities. We get wrapped up in physical therapy, occupational therapy, speech therapy, and then we hear about a parent who’s doing this other therapy, and another parent who's doing something different. You want to do everything, but you can’t. It’s impossible. And it’s okay to not do everything. It isn’t healthy, as a parent, to be focused on one child 24-7.

“I’m a big advocate of respite—no matter how you get it. When Emily was younger I hired a mother’s helper. At first, she would play with Emily and care for her while I was still in the house. Then, when I got confident with her, I might leave them and run out to the grocery store. But most often, I went upstairs to have a nap.

“I put Emily in respite at Safehaven when she was 13. It was hard dropping her off, because she would cry. I had to do it in small steps and stages—baby steps. The first time we just visited. The next time we came and dropped her off at dinner time, because her favourite thing was eating. Then we came back to get her in two hours. The next time she stayed over a night. After that she would go for weekends. And then finally we were able to leave her for one week.

“Emily is a homebody and she doesn’t like to leave, so when she recognized we were going to Safehaven, she would often start to cry. But I would call after I dropped her off and the staff would hold up the phone so I could hear her interacting. And I could hear she was having fun.

“Now, Emily is in full-time residence at Participation House, and it was because of our experience with respite that when she turned 18, we found out about Participation House.

“Until she moved, I didn’t realize how stressed I was having Emily in the house. It’s hard not having her here, but it is for my mental and physical health, and for my family. I had to look at what was best for the whole family, including Emily’s brother Tyler.

“It was when the mother of another boy Emily went to school with passed away that I realized I had to take care of myself and I had to take care of the whole family.

“A long time ago, another person told me ‘You need to take care of yourself first. And then, when you’re good, that will take care of your relationship with your spouse. And if that is good, it will trickle down to your children.’ As opposed to what we usually do—which is put our children first, then our spouse, and then ourselves.

“Because we had put Emily in respite since she was 13, when we moved into the adult system, we sought out respite and she went to Participation House. On the Developmental Services Ontario form, I filled out that my vision was that Emily would live in a full-time residence. We were very lucky when a spot became available. They already knew Emily well, so they didn’t even have to go through all of the interviews.

“Respite is very important. It gives you some time with your family, so that you’re not feeling overwhelmed all the time.

“Sometimes, when Emily was younger, we would put her in respite and we’d come home and just crash. Then we could spend more time with Emily’s brother Tyler. We got used to the idea that she was comfortable there. We did our due diligence and looked into these places. It wasn’t always the best thing for Emily, but using respite was the best thing for our family.

“Often, parents like us are so stressed out that we don’t exercise, we don’t eat right, and we don’t sleep. That can make us more susceptible to some diseases.

“I reduced the amount of volunteering I was doing, even though it makes me feel good. I stopped doing things that I felt I had to, and only did things I wanted to do.

“Right now I’m able to go to yoga, and I have the energy to actually do it.”

Laura says that putting her mental health first has changed her life and made her whole family happier. What strategies do you use?

Friday, May 4, 2018

Siblings say depression in disabled adults is their top worry

By Louise Kinross

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.