By Louise Kinross
When your child has a disability, how do you find the best therapies, adapted sports programs, or accessible playgrounds and restaurants?
It often involves a lot of trial and error, and, in the case of private therapies, wasted dollars when the fit isn’t right.
That’s why researchers at Holland Bloorview are developing a crowdsourcing app to help parents and kids find nearby Toronto services that meet their specific needs. The app will include a user quality rating system of one to five stars.
“We need this application because information about services is scattered on the Internet, and it’s time-consuming for families to find what they need,” says Eric Wan, the Holland Bloorview software developer leading the project. Eric is beginning his PhD in biomedical engineering at the University of Toronto.
“With this app, we’ll have clients sign up for accounts and specify their needs, diagnosis and location,” Eric says. “Then, each time they use a service, they will rate it on a five-star system. The app will help families find quality services more efficiently.”
Eric says his team already has a prototype, and hopes to begin six months of beta testing with about 100 users in September. The app will include public and private services and can be used on a phone, desktop computer or tablet.
The initial idea came from Julia Hanigsberg, president and CEO at Holland Bloorview, who has a daughter with a disability. “What I constantly hear from parents is that it’s hard to know what’s out there in terms of services, and the best source of information is often other families,” Julia says. “Clinicians say it’s hard to keep up with available services and have accurate, up-to-date information to give to families. I believe in the power of harnessing the knowledge and experience of the crowd.”
Eric says he began computer programming as an eight year old, and loves it because “there’s always something new to learn. It never bores me.”
Years ago, his first assignment at Holland Bloorview was to classify swallowing data on the aspirometer—a sensor worn on a child’s neck to alert families when a child was about to aspirate. “That was the very first time I used software development for something practical,” he says.
Eric says he often uses Yelp, a restaurant rating, to find out whether venues will accommodate his wheelchair. Eric is himself paralyzed from the shoulders down due a reaction to a measles shot at the age of 18.
His PhD will be supervised by Holland Bloorview scientist Azadeh Kushki. “She’s very open to new ideas and gives me a lot of flexibility in how exactly to develop the software,” he says.
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.
By Louise Kinross
What would best support parents of adult children with developmental disabilities who’ve left school and fall into a black-hole of services to fill their day?
A six-week mindfulness group that taught parents to pay attention to their feelings and thoughts in an accepting, non-judgmental way, or a six-week group that gave parents information and support on how to get services for adults, many of which are wait-listed?
A fascinating study in the Journal of Autism and Developmental Disorders compared the two, and found parents in the mindfulness group reported significant drops in depression and stress, while parents in the information and support group did not.
“We forget that stress for these parents accumulates over time, and the demands become bigger as the child becomes an adult and service gaps are more extreme,” says lead investigator Dr. Yona Lunsky, a clinician scientist at CAMH who partnered with Developmental Services Ontario (DSO) and Community Living Toronto.
Yona worked with DSO to recruit parents who had applied for services into one of two randomized groups. The parents ranged from age 37 to 81. Their adult children were aged 16 to 40, with autism or other developmental disabilities. One-quarter of the adult children didn’t have anything to do weekdays during the study.
“The study looked at parents who came to DSO to access services, and who were focusing on their kids as opposed to themselves,” Yona says. “We wanted to see if we could teach a skill that doesn’t change the child’s situation, but changes how parents view and deal with it.”
Parents in both groups met weekly for two hours for six weeks. In the mindfulness group, they learned practices like the body scan—where they feel each body part, from toes to head—a three-minute breathing exercise, and a loving-kindness meditation. They also learned how to be more mindful with their child—for example, observing something about their child that brings them awe.
The goal was to teach practices that parents could use on the fly while juggling their many responsibilities. ”The demands in their day mean these parents are constantly pulled away from being aware of themselves,” Yona says. “We encourage them to use their senses to come back to themselves and pay attention to how they feel.”
It could be taking a moment before they get out of their car, or while sitting in a waiting room. “It’s just as important to notice ‘I’m upset, I’m tired, I’m exhausted’ as it is to notice ‘I feel good,” Yona says.
Self-compassion is a big part of the practice. Parents tend to have empathy for their children or the experience of other parents, “but they don’t take the time to have that same compassion for themselves,” Yona says.
“We’re teaching them how to be in the present moment, and how to be aware of a thought or a feeling without judging it. Perhaps today you notice some tightness in your chest or negative thoughts or feelings about your child: ‘I’m really frustrated.’ But if you’re not aware of that emotion, you can’t change your interactions or choices to help yourself. If you’re aware that you’re feeling frustrated, perhaps you pause, take a break, drink some water or do something else to take care of yourself. Maybe you ask someone to step in to help. It’s the idea of the parent putting on an oxygen mask in the airplane first, before putting it on their child.”
The parents who met in the information and support group listened to speakers on topics like adult day programs, residential care and mental-health services, person-directed planning and parent self-care.
Child care was provided for both groups and parents had a break for tea and a chat in the middle of each session.
Parents in both groups said the interventions were beneficial and they liked meeting parents in similar situations. Two years later, some parents from both groups continue to meet.
However, on a 14-item measure, parents in the mindfulness group reported significant reductions in depression and stress which weren’t seen in the information group parents. “Parents who did the mindfulness had an improvement from before to after, and they maintained that improvement 20 weeks later,” Yona says.
“We think it’s because they’re learning a skill that over time can help reduce stress and improve mood, and it’s not driven by success in your environment. If we feel happy because our child achieved ‘x,’ then our happiness depends on the child. But the issues these parents face—whether accessing a service or dealing with a behavioural or mental health problem in their child—don’t necessarily have immediate solutions.”
In the paper, the authors note that mindfulness “moves away from a focus on problem-solving to instead offer skills to cope with situations that are difficult and may not improve very quickly.”
Yona says next steps in the research include looking at virtual and other ways to deliver mindfulness training, what the best intensity of the intervention is, and how the makeup of the group influences outcomes.
You can contact Yona at Yona.Lunsky@camh.ca.
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