'I love it if someone needs help and I can help'

By Louise Kinross

If you're a parent staying at Holland Bloorview with your child, chances are you know Berthe Nabico. Berthe has been a housekeeper here for 30 years, and her ready smile and willingness to sit and chat with parents and kids makes the hospital feel more like home. Berthe speaks four languages, which comes in handy for some of our clients, and she's a master seamstress who adapts clothes for children with disabilities and in casts. In Holland Bloorview's accommodations for families, Berthe has sewn playpen mattresses, recovered furniture upholstery and made all kinds of positioning cushions. Her day begins at 6 a.m., when she puts in three to four hours at her sewing machines at home, before coming to her job here. In addition to adapted products, she makes all kinds of bedding, pillows and window coverings at Berta Beds. We spoke about her long history at Holland Bloorview.

BLOOM: How did you get into the field of housekeeping here?

Berthe Nabico: Thirty years ago I came from France. My husband was looking for a job, and somebody told him that Bloorview was hiring. I went with him to apply and we were told 'No, it's not for a man. It's for a lady.' At that time, there were jobs for men and jobs for ladies.

My husband said maybe I should ask about the job for me. I had been cleaning houses and all of the people I worked for loved me, and I loved them, too. But my husband said it's better for you to have a steady job. I thought he's right, so I asked for me. I got an interview with Mrs. Parker, and she asked me a few questions. I didn't have any English then, so I was trying to use sign language.

She said we'll send you a letter if you're not going to get the job, and we'll call you if you have the job. 

When I arrived home my phone was ringing. I took the phone, and it was Mrs. Parker, asking if I wanted to start the next day at 8 a.m., and I said yes. That was April 11, 1989.

BLOOM: What made you stay all these years?

Berthe Nabico: To tell you the truth, when I started, there was a 17-year-old boy who was a patient. The nurses told me 'If you see his door closed, don't go in the room,' so I always respected that. But one day the nurses were at the nursing station and I was cleaning another room and I heard this boy crying. Sobbing. I said 'I don't care what the nurses tell me, I can go inside this room because the boy is crying.'

I opened the door, and the boy's g-tube was wrapped tight around his neck. I screamed and said 'Come here, this boy needs help!' The parents were very happy and said I had saved their son's life. When their son went home, they asked me to go and work at their house every day. I said no, my place is here. Something inside me told me 'I think this is the right place for me to be.' 

BLOOM: Wow! What is a typical day like for you now?

Berthe Nabico: I'm working in the accommodations for families. It's a place I love. So many people, when they come, they're in a lot of stress. I let them sit, and every day I'm asking 'How is your son today?' or 'How is your day going?' I encourage them, and when they leave they wrap me [in a hug] and want to stay friends with me. I have many friends from work on my Facebook. 

I clean 10 rooms every day, and also do some cleaning in other areas. In the rooms I make beds and do everything perfect. 

BLOOM: What is the greatest joy of your work?

Berthe Nabico: I love it if someone needs help and I can help, and after I like to see their smile, or they thank me for helping them. 

BLOOM: What is the greatest challenge?

Berthe Nabico: At the end of the day I'm tired. It's very physical work.

BLOOM: What kind of emotions come with the job?

Berthe Nabico: I feel sad when I see suffering, and sometimes I like to teach people how to survive, how to do this better.

I remember one family arrived and the husband came in the room and said 'It's very hot. Do something!' I said 'Okay, I can open the window,' and I did. Half an hour later, he comes back and says 'Now it's cold.' I could see it wasn't him, it was his nerves. So I sit with him, and I touch him, and I say 'Can you say please, or give me a little smile?' A few days after he came to me and [hugged] me and said 'Thank you so much for understanding how we were feeling.' 

It's things like that. We have to see how people are feeling inside, and give them what they need.

I had a family and the first day they came, the mother told me that for two months she was in stress, because she was afraid the room here would be dirty and very ugly. She even brought cleaning supplies. When she arrived, the floor was spotless and everything was clean, and she was so impressed and said 'Everything is perfect.' After that she bought me a coffee and asked if we could be friends.

Sometimes I feel stress, but I calm down. 

BLOOM: Does anything help you manage stress?

Berthe Nabico: It helps me when I'm sewing, especially when I'm doing something new. Sometimes if a child here has a cast and it's very hard to pull on their pants, I will adapt their clothes so the parent can open and close them with Velcro. Creating something like that takes out my stress.

BLOOM: What kind of qualities are important in your job?

Berthe Nabico: You have to be polite, always with your smile. And if you have problems, don't show the people your problems. Make sure you are doing a good job. I'm very picky. 

BLOOM: What have you learned from families?

Berthe Nabico: Everyday I learn with them and they learn with me. Everyone is different. Every situation is different. All these years I've learned how to handle different families and help them. It's the same with the kids. I have so many stories you could write a book.

BLOOM: How do you compare the care we provide now, with the care we provided when you first began?

Berthe Nabico: Now we have kids with more complicated medical problems. More therapists are involved and I think it's good. Patients are better supported by a whole team of people. The other change is that when I began, children lived here permanently. 

BLOOM: You told me that many families abandoned their children at the old site.

Berthe Nabico: Yes, they did. But we also had some amazing parents. I remember when Emily Chan was a little baby. Every day, we were expecting her to pass away, but her parents were amazing.

Two months ago I was at an event in the cafeteria and I saw Emily, who is now working here, drinking a glass of wine. I went to her and gave her a hug and said 'Emily, you make me so happy. You make my day today.'

BLOOM: That's an incredible story! I remember Emily racing down the halls in her electric chair to go to the MacMillan site school.  She was part of our integrated kindergarten. Is there anything we could change to make our care better?

Berthe Nabico: I think they're doing a good job. Something that is very important is the summer camp.

BLOOM: Spiral Garden?

Berthe Nabico: Yes. The garden is very, very important for the inpatients. Think about if you were in your room, sick, and you don't have anyone to talk to. The volunteers come and talk to these kids, and when they are out in the garden, they're distracted, and they forget they are sick.

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'I wanted to make sure this didn't happen to another kid'

By Louise Kinross

Laura Oxenham-Murphy is the interim director of Quality, Safety and Performance at Holland Bloorview. Laura first thought about improving hospital care when she was a child. That's because at age eight, she was on the receiving end of a medical error. "It ended up having a huge impact on my life," Laura says. We spoke about how this experience spurred her career.

BLOOM: Can you tell us more about your story?

Laura Oxenham-Murphy: When I was eight I was scheduled to have a routine surgery to remove three child teeth. That was that, and I was supposed to go on my merry way. But the surgeon that was operating on me had the wrong patient chart. He ended up doing a procedure that was completely incorrect and removing three adult teeth.

It meant three or four follow-up surgeries that I wouldn't have had to have. And quarterly visits to a specialist, who lived over an hour from my house, from age eight to 18. What was most significant was that the incorrect surgery was visibly obvious for many years. For all of junior high I was missing teeth. It wasn't pleasant.

BLOOM: Why did you have to have the follow-up surgeries?

Laura Oxenham-Murphy: They removed enough adult teeth that the bone disintegrated, or stopped growing, so when I was old enough to have a permanent implant put in, the bone structure wasn't there. I had to have bone grafts and the recovery from that involved missing a lot of school. Then I had to have surgeries for permanent implants. It was painful. And none of this had to happen.

BLOOM: How did you initially cope?

Laura Oxenham-Murphy: Even as an eight-year-old you're concerned with what will people say, or what will people think at school? I'm going to look a bit different from other people. At eight, I didn't really understand why this happened. Why did he make the mistake?

When I went back to follow up with a different specialist, even as a child I could recognize that he was trying to cover up what happened and minimizing it. 'Well, you might have had to have these teeth taken out anyway' was the argument he got into with my mom. I piped up: 'No, I specifically remember I was told it would only be my baby teeth and it wouldn't have affected my adult teeth.'

BLOOM: How did that experience lead you into quality?

Laura Oxenham-Murphy: From a young age I wanted to make sure this didn't happen to another kid. At first I thought that meant going into clinical practice.

But my mom is a health-care practitioner and she said if you really want to make change at a system level, you should consider doing a master's in health administration and work in an administrative and leadership capacity. That spurred me into taking a pretty non-traditional route into the role I have today. I went straight into the administrative role, as per my mom's coaching.

BLOOM: Has not having a clinical background been challenging?

Laura Oxenham-Murphy: It can be, and certainly comes up from time to time, primarily in job interviews and when I meet new colleagues for the first time. However, I think I'm able to bring a different lens and ask different questions.

That said, when working on quality and safety improvement projects I make sure to have a strong team that always includes clinicians.

I don't regret the path I've chosen. When I got into my master's and was able to take a couple of elective courses in quality improvement, that's where it hit me. Yes, yes, this is what I've been thinking about since I was 10 years old!

BLOOM: What is a typical day here like?

Laura Oxenham-Murphy: Oh boy. You may have a plan for what you hope to accomplish, which are mostly projects at a strategic level. But then incidents, complaints or concerns come up, and most often those are things that require immediate attention, so your plan for the day gets derailed. I manage urgent risk cases as they come to me, or privacy concerns.

I work closely with the people on my Quality, Safety and Performance team, as well as others across the hospital. We're a very close-knit QSP team, so to meet deadlines and get the work done, I rely on my colleagues. It's a very dedicated team and I'm proud to be part of it.

I spend a lot of time in meetings, and work with my counterparts in other hospitals to further the quality agenda at a system level. We share resources and best practices we can take back to our own organization.

BLOOM: What's the greatest challenge of the job?

Laura Oxenham-Murphy: The unpredictability. Some days you might have nothing out of the ordinary, and you're able to get into a good flow on some of our projects and initiatives. Other days, one thing after another happens and you're not able to open your e-mail till 5 p.m.

BLOOM: How do you manage stress?

Laura Oxenham-Murphy: I wake up at 5:30 every morning and exercise. We have a bare-bones home gym/yoga studio and my husband and I are both very committed to getting each other out of bed. We go down to the gym or if the weather permits, we go for a run. It's the only time we get to spend together on weekdays as our jobs pull us in different directions in the evenings.

I wouldn't be able to do what I do here without that. We'll exercise for 45 minutes to an hour, then spend time together eating a solid breakfast of oats, coffee and some fruit. I find it really grounds me. And we try as much as possible not to talk about work.

BLOOM: What's the greatest joy of your job here?

Laura Oxenham-Murphy: I love when there's been a risk issue and I'm able to interact with clients and families, as well as front-line staff, and we're able to come to a resolution, or even to see small differences, that shift the relationship to a more positive one.

I love bringing together passionate people—clinicians, leaders, clients and families—to work collaboratively on a particular quality improvement initiative, and supporting their capability and commitment. We are so fortunate as a hospital to have such a highly engaged group of clinical and non-clinical staff, and I see my role as enabling our staff in their commitment to quality and safety.

BLOOM: What's an example?

Laura Oxenham-Murphy: One of the things I'm most proud of is our recent success with our last Accreditation cycle. It's not about the exceptional results we received from the surveyors. What I'm really proud of is playing a role in having our clinicians, leaders and clients and families partner together more closely on quality and safety.

BLOOM: How often do you work with parents and kids?

Laura Oxenham-Murphy: On a weekly, even daily, basis. When I'm wearing my risk and privacy hat I'm dealing with clients and families. In the quality world, I'm interacting with family and youth leaders. Interacting with our clients and families is truly one of my favourite parts of the job, and really helps to ground me in what we are collectively striving toward.

One of the interesting dichotomies to get my head around is the perspective of how we merge, or think about, what are the important issues from the perspective of family leaders—a cohort of individuals that are very educated about the system and how to navigate it, and have a clear vision of where they want it to go—with a family that is concerned because their child didn't get the correct medication at a certain time.

BLOOM: What are common risk issues?

Laura Oxenham-Murphy: There's a lot around informed consent. Parents saying something wasn't explained in a way that they understood, or that resonated for them. When there's a complex family dynamic, there might be two parents who have varying custody arrangements, and one wants to go one way and the other disagrees.

There are concerns about timely access to services or delays in treatment. With all risk cases, I partner closely with clinical teams, Client and Family Integrated Care and Bioethics together with the client and family to come to a mutual resolution.

BLOOM: How does your firsthand experience with a medical error help in these discussions?

Laura Oxenham-Murphy: I believe it helps me empathize a little differently. It's not something I would ever say. I would never use the words 'I know what you're going through,' because clearly I don't. Every experience is different. But in the back of my mind, I can call up some of those feelings and emotions that I experienced, and my family experienced, which can help me relate to what a family is feeling.

BLOOM: What have you learned from families?

Laura Oxenham-Murphy: I've learned so much, I don't even know where to start. One of the things I've appreciated the most about working here is the opportunity to interact with patients and families and family leaders. It's helped me to come back to that true sense of why I want to do what I'm doing, and why I'm committed. I want to promote optimal experiences for patients and families and when I get to have conversations with them, it grounds me and makes why I've started on this journey more tangible.

BLOOM: If you could change one thing about children's rehab, what would it be?

Laura Oxenham-Murphy: I think making the system easier to navigator for our clients and families. So getting certain services doesn't require being connected to the right people and knowing the right questions to ask. If there weren't gatekeepers, and people could just come and learn about different services that were available. If the solutions were simple, we would have implemented them.

Also, from a health equity perspective, I've been thinking a lot about how we ensure our services are meeting the cultural needs of the diverse population we're meant to serve. I credit Aman Sium with helping me understand this better than I had previously. 

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Health care for disabled Ontarians fails to measure up

By Louise Kinross

Ontario adults with developmental disabilities are nearly four times more likely to die early than their non-disabled peers, and fare worse on four other health indicators, finds a study released by the Institute for Clinical Evaluative Sciences today. 

Researchers from ICES, the Centre for Addictions and Mental Health and the University of Ontario Institute of Technology looked at the medical records of over 64,000 Ontario residents with a range of developmental disabilities, including Down syndrome and autism, between 2010 and 2016.

In addition to dying earlier, the population-based study found adults with developmental disabilities were over six times more likely to spend at least one day stuck in hospital when ready to be discharged; nearly two times more likely to have repeat emergency-room visits; over three times more likely to be readmitted to hospital within 30 days of discharge; and 17.5 times more likely to spend at least one day in long-term care.

Adults with developmental disabilities faced these problems regardless of their age, sex, or the income level of the neighbourhood they lived in.

The study defined premature mortality as dying before the age of 75. In the general population, the rate of premature mortality was 1.6 per cent. In those with developmental disabilities, it was 6.1 per cent. For people with Down syndrome, the rate was 12.3 per cent.

BLOOM interviewed study co-author Dr. Yona Lunsky, director of the Health Care Access Research and Developmental Disabilities Program and the Azrieli Adult Neurodevelopmental Centre at CAMH.

BLOOM: Why was there a need for this study?

Yona Lunsky: The study is part of our ongoing program to look at how to improve the health of adults with developmental disabilities in Ontario. We wanted to take indicators of health care that are used in the general population and look at them together, in this population, to bridge silos that exist now. These indicators were chosen because they’re issues that have been flagged as concerns. When we’re thinking of hallway medicine, we may get an image of an older person in a hospital bed in the hallway who needs to get into longer-term care. But the person we’re talking about may be 25 years old with a developmental disability and need something different.

BLOOM: What were the key findings?

Yona Lunsky: The main finding is that across health-care outcomes this large group of adults with developmental disabilities fares worse than adults who don’t have developmental disabilities. That means we need to do something that impacts all of those areas of care, and not just one of them. 

We’re also learning that not every single person with a developmental disability is the same. That’s why we studied different groups. How is it different if you’re a man or a woman, young or old, or living in a lower versus higher income neighbourhood? How is it different if you have Down syndrome or autism? By looking at subgroups, we see that there isn’t one solution that will fit everyone. There are unique issues.

BLOOM: Is there a reason why race wasn’t considered?

Yona Lunsky: That’s a great question. We didn't have data on race available to us through ICES. We were working with existing administrative health data and that information is not available at the population level.

BLOOM: How would you describe health care for this population in Ontario?

Yona Lunsky: Our study gives us a big picture of the type of things that are extremely stressful and difficult for people, and costly, and that are happening at higher rates than in the general population. This is a big problem. This isn’t a study of why. We can’t say how much is due to a person’s disability or how much is due to health-care training gaps, or stigma, or non-health related services.

BLOOM: When you looked at early deaths, were these deaths considered preventable?

Yona Lunsky: That’s a really good question. We didn’t look at the causes of death, and that’s something we need to do. In the U.K. and Australia, where they have looked more closely at mortality data for this population, they’re finding many causes are preventable.

BLOOM: We’ve seen in other countries people with developmental disabilities dying of completely treatable conditions like constipation.

Yona Lunsky: It's possible that could happen here as well, but we didn't look at why the deaths happened. We need to do that and then ask whether any of these are preventable deaths.

BLOOM: How did the health-care outcomes differ based on whether the person had Down syndrome, autism, or any developmental disabilities with a mental illness and/or addictions diagnosis?

Yona Lunsky: I think the bigger message is that there are things we can do to benefit the entire population, but there can also be value in understanding the unique needs of subgroups. If you’re walking into a health-care setting, you want your disability to be recognized so you can have appropriate accommodations. And the transition from one health setting to another has to be a good, smooth supported transition, regardless of the disability you have.

But then, are there specific things we can do for adults with Down syndrome who have a higher premature mortality rate or a greater likelihood of living in long-term care?

BLOOM: We’ve heard about how youth with all kinds of disabilities fall into a care gap when they graduate from pediatric to the adult system. Why is this problem so striking for adults with developmental disabilities?

Yona Lunsky: You work at Holland Bloorview, which is the most family-centred place on the planet. You’re used to talking to the family and the person with a disability at the same time. You make the space fun: Your floor lights up when you step on parts of it. Everyone says hi, and everyone is friendly.

Adult-care settings are not designed to be family-friendly, or to address different developmental stages. No one says hi in the elevator. If you’re an 18-year-old patient, you give the consent to the person you talk to, and health-care providers are less accustomed to including the family or other carers in the same way.

Crystal Chin has spoken about how we have developmental pediatrics, but we don’t have developmental medicine. So in pediatrics, there’s a whole area where people are trained to work with different disability groups. But in adult care, we don’t have that. There isn’t a Holland Bloorview for adults to go to. We don’t have specialized settings that are more accommodating to the unique needs of people with disabilities. And in the adult world, you’re not trained to work with people with disabilities and their families.

BLOOM: How does the devaluation of people with developmental disabilities influence care?

Yona Lunsky: If a person with a disability is going to Canada’s Wonderland, they know that if they make their disability known, they receive accommodations. Maybe they won’t have to stand in line for so long. But what incentive do people have in adult care to make their needs known? What if from the patient perspective, you believe you won’t be taken seriously if you have a certain kind of disability? What if you think providers will attribute your problems to behaviour? What if the attitudes of professionals may make your care worse?

BLOOM: I guess even if the person does self-identify, does that mean they will receive what they need?

Yona Lunsky: It’s the first step. Once I say ‘I have this disability’ we need staff who have skills and resources, and knowledge of what to do. From our study, we can't tell how much a lack of skills, resources and knowledge—or negative attitudes—impacts the health-care interaction.

BLOOM: How likely is it that new resources will be brought to bear on this problem given your study?

Yona Lunsky: I can’t predict how likely it is. But in a perfect world, numbers are part of what informs decision-making.

BLOOM: What advice would you give people with developmental disabilities and their families?

Yona Lunsky: We’ve developed some resources in partnership with adults with developmental disabilities and their families. It would be great if people could look at these resources and tell us what works, and what doesn’t work well. It’s important to look at what is already there, and if something isn’t there, to be part of the solution. We also need to learn when things go right. Everyone should have a voice.

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Racism and ableism stack up against black moms, study finds

By Louise Kinross

Last month York University researcher Nazilla Khanlou presented results on a study of black mothers with children with developmental disabilities at the Racialized Maternal Health Conference in Toronto. Her team interviewed seven black mothers and three service providers to learn about the challenges the mothers faced and how these barriers influenced their own health. BLOOM did an interview, by e-mail, with Nazilla and two of her co-researchers—Luz Maria Vasquez and Attia Khan.

BLOOM: Why was the study needed?

Nazilla, Luz, Attia: According to the literature, racialized mothers of children with developmental disabilities bear a disproportionate burden of stress, illness and health inequities. They are triply marginalized due to factors related to their Black, Latino, Asian or Indigenous backgrounds; their gender; and because they are the main caregiver for their family. Studies associate these factors with poor health outcomes for mothers.

The study was needed because our programs to promote the health and wellbeing of women do not consider the specific experiences and needs of racialized mothers of children with developmental disabilities. Based on our previous studies, we discovered there was a need to reach out to this population to hear their specific perspectives on how society and institutions can support their wellbeing.

BLOOM: How did you define racialized mothers in the study? Were they all immigrant mothers?

Nazilla, Luz, Attia: We used the term ‘racialized’ to recognize the existence of power imbalances among the population that favour certain groups in our society and disadvantage other segments of the population. Some racialized mothers are immigrants, and others are Canadian.

BLOOM: What kind of questions did you ask in the interviews?

Nazilla, Luz, Attia: Some examples:

-What is ‘racism’ to you?

-What does a health-care provider or social-service provider need to know about your experiences with racism, and other barriers, to more effectively meet your needs?

-Who do you think can help you to do the things you want to do? (e.g. agencies, family, partner, friends)?

BLOOM: What were the key findings?

Nazilla, Luz, Attia: In this study we learned that the challenges of mothering children and youth with developmental disabilities increase when mothers are racialized. The added challenges of mothering a child with a developmental disability included the need to provide care around-the-clock, perhaps over a lifetime; financial difficulties; social stigma; being blamed for their child's disability; and lack of social support. On top of that, mothers needed to work extra hard to protect their children from racism and discrimination. 

BLOOM: It sounds like the first barrier they experience is the challenge of getting what their child with disability needs. And the second barrier is the racism they experience in the medical system and the community. Also, I noticed in your study that mothers felt stigmatized by their own families.

Nazilla, Luz, Attia: Mothers referred to the issue of service access and utilization. They felt they weren't treated equally, because of race, in learning about school and health-care resources. They felt service providers didn't give them adequate information. Some mothers felt service providers were intentionally unhelpful, or were saving those supports for other families.

One said: 'We will not have access to the same services, even the developmental services...you see how they treat the white people different than how they treat the black people. They don't give you the information that's available.'

In regards to their families, some mothers highlighted a lack of support and understanding about the specific needs of their children with developmental disabilities. They also felt socially isolated from their families.

BLOOM: I thought it was interesting that five of the seven mothers interviewed were single. Would we expect this in another population of mothers raising kids with developmental disabilities?

Nazilla, Luz, Attia: First of all, it’s important to highlight that there is stigma and stereotyping attached to marital status. In light of this, we, as researchers, don’t make assumptions about marital status among the different populations we study. In the context of our study, we understand marital status as an important factor affecting mothers’ health-promotion experiences.

As the mothers explained, lack of support from family members (including partners, husbands, mothers and siblings) is a key social determinant of their and their children’s health and wellbeing. This lack of support intersects with other determinants, such as employment, time, and other resources.

BLOOM: What were the strengths you identified in these moms?

Nazilla, Luz, Attia: Mothers discussed these strategies they use to cope with racism and discrimination in the context of raising their children:

-They teach their children about the reality of racism and how they have to work ‘twice as hard’ as non-racialized individuals.

-They practise and teach key values to their children like tolerance, respect and understanding. As one mother said: 'I raise my child to respect everybody, because I believe racism starts in somebody's house.'

BLOOM: What did the mothers suggest would help professionals provide better care?

Nazilla, Luz, Attia: A key suggestion was the need for service providers to be educated about the implications of racism in the lives of the populations they serve.

Service providers should be taught, as part of their professional development, the role that racism plays in limiting health promotion opportunities; that racism intersects with other social determinants of health, such as socioeconomic opportunities; and that stigma and discrimination are part of the everyday experiences of racialized mothers and their children.

In sum, service providers need to understand the negative impact that racism has in the lives of the mothers. Service providers need to be proactive and critical about how their own activities may be directly or indirectly reproducing discrimination or racism.

Mothers also suggested we need more service providers with diverse backgrounds; more information about services; more programs and services; and a hotline to support mothers.

BLOOM: You also interviewed three professionals who work with the black community. Were they seeing similar things with their clients that the mothers talked about?

Nazilla, Luz, Attia: The service providers we interviewed, who were of racialized backgrounds, agreed that racism exists in our society. But often racism is subtle, they said. People don’t outwardly say things, but hold strong beliefs that cause them to treat other people unfairly. Those on the receiving end may not call it racism, but talk about being disrespected or feeling insulted or shunned.

The service providers felt that racism was seen more in public places, like grocery stores and malls, but was less commonly experienced in health care. They believed that lack of socioeconomic resources—such as employment and family support—as well as language barriers, were obstacles to care, or negatively impacted the mothers’ health.

They noted that people are served on first-come first-serve basis, so people who are persistent receive the support they need. They felt diversity in the backgrounds of staff and volunteers and in program activities would help mothers feel welcome and included, and that they are treated fairly. Service providers said that they, and their colleagues, would not treat one person in line differently from another person.

BLOOM: What are next steps for this research?

To transfer our knowledge, including:

-to inform equity-based health-promotion practice policy for racialized mothers of children, youth and young adults with developmental disabilities

-to include on our website an information brief in plain language and one on video. Both will outline the health-promotion framework, and its application to racialized mothers, and other strategies will be recommended.

-to continue to disseminate findings across various venues. For example, we recently presented at the Racialized Maternal Health Conference, and at the LaMarsh Centre for Children and Youth speakers series. We will be presenting a poster at the upcoming Ontario Shores Annual Mental Health Conference.

BLOOM: If a professional takes one thing from this study, what should it be?

Nazilla, Luz, Attia: They need to reflect on how much they know about racism, and to acknowledge that racialization and racism impacts mothers’ wellbeing through their intersections with gender, privilege and power. Furthermore, they need to be critical about the assumptions or prejudices that inform their own everyday practices, and how they may negatively impact on the racialized populations they serve. Finally, service providers need to be proactive in terms of openly addressing discrimination and racism in the settings where they work.

Service providers told us that one size does not fit all. Programs that don’t really connect or resonate with the community that they’re serving are less likely to succeed. They also believed that programs need to be tailored to specific community needs. For example, they suggested dedicated programs for people who are new to Canada versus people who are born and raised in Canada.

Please watch this fabulous video about the York University study, which was funded by Women's College Hospital's The $15K Challenge. Nazilla holds the Women's Health Research Chair in Mental Health. You can follow her @YorkUOWHC. 

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'I'd like to see siblings treated more like patients'

By Louise Kinross

Victoria Rombos has worked in Holland Bloorview’s Ronald McDonald playroom as an early childhood studies student, then volunteer, and now staff member. But her connection with Holland Bloorview goes way back. Victoria’s younger sister Chrysoula, 19, developed a seizure disorder after having cataract surgery as a toddler. "It was a side effect of the surgery, but I only just found that out," Victoria says. "I thought I knew the story, but I keep finding out more." As a big sister, Victoria is very involved in Chrysoula’s life, so it's fitting that she's spearheading Holland Bloorview's new Sibling Support Program.

BLOOM: How did you get into this field? 

Victoria Rombos: It was because of my sister, mostly. 

BLOOM: How would you describe her?

Victoria Rombos: I describe her as sassy. She has an intellectual disability and uses a wheelchair and is non-verbal. We’re not entirely sure how much she understands, but I think she understands a lot more than people think. She’ll laugh at things, or pretend to be asleep and then pop open her eyes. She likes music. The Wheels on the Bus was always her song. I get her to play games on the iPad where she touches things and they change colours. I try to paint her nails sometimes, but she moves around too much. Recently she had a three-month stay at Sunnybrook due to pneumonia.

BLOOM: How have you found the move to the adult system?

Victoria Rombos: My sister is very small, so they were taxiing child-sized equipment back and forth from SickKids. Most of the nurses at Sunnybrook hadn’t encountered people with disability. They really didn’t have a sense of her needs, and my mom was going through the complaint department constantly. Now my sister has a trache, which has been a real learning experience.

BLOOM: Does your sister have home nursing at night?

Victoria Rombos: Until recently, she only had 12 night nursing hours a week, and my mom had to do everything else at night. We were just given an increase to 24 night hours a week.

BLOOM: That’s still a huge amount of night hours that your mom needs to do. What was it like growing up with a sister with pretty complex needs?

Victoria Rombos: It was really interesting. I only felt super different sometimes. The public school I went to had the Wayne Avenue preschool in it, so Chrysoula went there when I was in Grade 2. I remember when I asked the principal why my sister’s birthday wasn’t included in the announcements, like my birthday was. I used to like pulling the wagons with the kids in the preschool and I would get my friends to come and help. Since then, Chrysoula has gone to a segregated school, which works best for her.

I definitely feel isolated from other people sometimes, that I've had experiences that are different from my peers. I feel I would have benefited from knowing there were other kids who had a sib like me. In 2016, I sat on Holland Bloorview’s sibling panel. It was the first thing I’d done as a sib. I remember talking with Michelle Char, who was also on the panel, and being so surprised that she got it. She knew what a suction machine is.

When I was younger, I thought my parents liked my sister better than me because they spent more time with her. I was a little resentful, but I was a really empathetic kid. When kids with disabilities were picked on at my school I would tell people off. I had a lot of family support when my sister was in hospital, and would spend time with my grandmother and other relatives.

BLOOM: So your early experiences with your sister in the health care system influenced your career choice?

Victoria Rombos: Yes. I always wanted to work with kids with disabilities. Initially I wanted to be a teacher. I was interested in a special-education degree at the University of Toronto, but in my last year of high school they changed the requirements to include statistics and the highest math. That wasn’t happening! So I looked at the next closest thing, which was the program at Ryerson.

BLOOM: What ages does the early childhood studies program cover?

Victoria Rombos: Zero to five.

BLOOM: What’s a typical day like in the playroom for you?

Victoria Rombos: As it’s a drop-in, we never know what to expect. If there’s a clinic, we often get three to five kids in the morning, and then afternoons are typically a bit busier. We work with kids who are clients and their siblings.

BLOOM: What are the joys of the job?

Victoria Rombos: I like seeing the relief on parents’ faces when they realize they can take a break, or drop off all their coats. Sometimes parents will talk to me about something I can relate to, because I grew up with my sister. I like that I have that relatable sense. The kids are the most entertaining part. I like the different reactions they have, and when they ask lots of questions, or tell you about their favourite movie or what they've done that day.

BLOOM: What is the greatest challenge?

Victoria Rombos: Sometimes kids will ask a lot of questions of other kids who have disabilities, but without a filter. Sometimes we need to reroute those questions.

BLOOM: You’re running a new support program we offer for siblings aged seven to 18. How does it work?

Victoria Rombos: The sibling program shadows the family workshops that Melissa Ngo runs. They happen at the same time. We wanted to have a holistic family approach, so parents could go to the education workshop, while sibs come to our program, and patients go to the playroom.

There are official sibling programs in the U.K. and the U.S., but not in Canada. I’ve been getting inspiration from looking at those official programs, and then asking our siblings what they’d like to see.

I integrate things about siblings into relational games we play. One is called the spider’s web. One child holds a ball of yarn and says something about themselves, and if what they say relates to another child, that child puts up their hand and gets thrown the ball. It allows you to see how we’re all connected.

I may bring up a disability-related topic when I hold the yarn, like ‘my sister doesn’t talk,’ and see how many other kids relate to that. Another successful one is to ask what they like about their sibling, or what bugs them about their sibling. A child might say ‘I don’t like the sound of my brother’s CPAP machine.'

BLOOM: Why is this program important?

Victoria Rombos: If a child goes to a school that doesn’t have a lot of students with disabilities, or goes to a different school from their brother or sister, it’s important to meet other kids like them, and feel less isolated. Some kids may need to vent about something they feel is unfair in their family, and find another sibling who feels that way. It helps children feel less alone.

BLOOM: What do you think is most misunderstood about siblings?

Victoria Rombos: Even now, there’s a lot of stuff my friends don’t get. They may talk about the future when their siblings will have kids. My sister won’t have children, and it’s not in a bad way, but it’s a newer thing I’m dealing with. We really need to destigmatize disabilities. Even some people in my family will say hi to my sister, but they don’t know how to really approach her. When you have a disability and you can’t speak, a lot of people discount you. They need to realize there’s a personality there.

BLOOM: Do you currently live at home with your sister?

Victoria Rombos: Yes. I’m not in a super rush to move out. I feel like I’m needed there. I would rather stay home and help my parents. Chrysoula was going to school five days a week, but since she got her trache, she needs a nurse. So my mom was told she can only go to school three days a week.

BLOOM: That’s terrible! There seem to be so many situations we’re hearing about where children with disabilities are not able to attend regular school hours, for all kinds of reasons.

Victoria Rombos: It’s not a good situation for my sister or my mother.

BLOOM: If you could change one thing about how we support siblings, what would it be?

Victoria Rombos: Siblings tend to fall into a gap. We have different programs and events for parents. I’d like to see siblings treated more like patients, like they’re important, and not a side thing. We go through a lot of emotional stuff. I remember the first time they intubated my sister and how upset and emotional my parents became. That's when I realized how serious this was, compared to her other hospitalizations. When you see that it’s traumatizing.

To find out more about Holland Bloorview's Sibling Support Program, e-mail siblingsupport@hollandbloorview.ca. To refer your child, fill out this form. The program is funded through our foundation's No Boundaries program. 

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'I'm calling attention to the whiteness' of health care

By Louise Kinross

Sarah Jama is a co-founder of the Disability Justice Network of Ontario. She has a long history of disability rights and anti-racism activism. While studying at McMaster University, Sarah headed the National Educational Association of Disabled Students for a two-year term. She also founded Maccess—the first peer-run service for students with disabilities at McMaster. This Wednesday Feb. 6, Sarah is speaking on Moving Toward A Disability Justice Revolution at Hart House at the University of Toronto. I learned a lot about her work through this video of a talk she gave last year called We All Deserve the Right to Life.

BLOOM: In your video, you talk about how you learned at age four that as a black, disabled girl, you didn’t have the same right to bodily autonomy as others. This happened here, at what was then the Hugh MacMillan Rehab Centre, when you came for your first physiotherapy appointment.

Sarah Jama: I was saying ‘No, I don’t want to do this,’ and they started to stretch my leg and my mom was freaking out, because she didn’t understand why it was painful. They asked her to leave the room, in order for the physio to continue, and she watched behind a two-way mirror, because she didn't want to get a coffee as they suggested.

When I talk about navigating the medical system with an immigrant family, a lot of times, without meaning to, people in medical positions play the role of the expert: ‘We know what’s best, therefore these things over time will be the best for your daughter.’ When the parent, or the person, isn’t seen to be the expert, there’s a lack of communication.

BLOOM: You said you and your mother were both in tears. Another time, when you were a teen, doctors wanted you to have a surgery. You didn’t want to have it, because it would mean you wouldn’t graduate on time with your peers. You had also had the same surgery at age 12, and it didn’t give you the result you expected.

Sarah Jama: The surgery, from my perspective, was an aesthetic one. It didn’t work the way I thought it would when I was 12. And it took four months for me to be fully rehabilitated. The surgeon looked at my mom like she was absurd in supporting me in my right to say no.

I talk about how these kinds of interactions, over time, can influence someone’s perception of bodily autonomy—that it means not having a say over certain areas of your life. Some people are viewed as experts over racialized bodies, which is dangerous when coupled with a lack of cultural competency.

An example is the criminalization of black and indigenous folks with invisible disabilities. Soliman Faqiri and Abdirahman Abdi and so many others with autism or schizophrenia have been killed by those meant to serve and protect, because being a person of colour, while having invisible disabilities, gets you perceived as being violent.

Our education system fails people with disabilities. In high school, I was given a spare in place of physical education. The school, at the time, didn’t have proper supports to support me in physical education. But that meant that I missed a lot of the sexual health education that’s taught.

We know from Statistics Canada that 82 per cent of women with disabilities will be assaulted once in their life in Canada. Sexual violence and education aren't linked at all, but we're missing key information on how to protect ourselves. The more I talk about how I missed out on that education, other people with disabilities tell me that they missed it, too.

When I’m talking about disability justice as a means to tackle forms of oppression, I’m coming at it from an intersectional perspective. The leadership, the people in positions of power, don’t reflect the disability community itself.

Within that, I’m calling attention to the whiteness of the structures that prevent people with disabilities from diverse backgrounds from being able to participate in all facets of education and health care, or result in them being perceived as violent.

BLOOM: You are the founder of the Disability Justice Network of Ontario. What is the purpose of that network?

Sarah Jama: Our vision is to create a world where people with disabilities are free to be. Our mission is to build a just and accessible Ontario where people with disabilities have personal and political agency, can thrive and foster community, and can build the power, capacity and skills needed to hold people, communities and institutions responsible for the spaces that they create.

BLOOM: What needs to change?

Sarah Jama: The problems are structural. The conversations around accessibility today are stuck in the ‘90s. We talk about people needing access so we can expend our economic purchasing power. There aren’t enough conversations around how people with disabilities who move through our education, medical and prison systems have a right to equity in these spaces, and how racialized people with disabilities navigate these spaces differently.

Another structural change that needs to occur is in our provincial and federal budgeting. A lot of funding goes towards children with disabilities. That funding becomes minuscule in adulthood. It’s as though people with disabilities don’t exist in our adulthood—we disappear.

The lack of education created for people with disabilities needs to be addressed. How are we training young people in the history of disability justice? Where do you learn this? I had to do a lot of self-learning about how disability rights came to be.

Systemically, I was taught that when you have a problem, there are systems in place to support you. For example, if you have a problem in school, you go to 'student accessibility services.' But what do you do when that system doesn’t work for you? The conversation around justice and rights is not happening in our education system. 

The important thing for young people with disabilities to know is that you don't have to resign yourself to using the structures in place.

We're the largest minority in the world: we fit every religion, race and geographical location. Someone with a disability who experiences structural issues should understand that not being able to navigate spaces easily is tied to root causes. People with disabilities don’t fit the common understanding of productivity, so we are least likely to have a system in place that fits us, especially if we’re seen as not being able to contribute back.

I was able to push my university to allocate $30,000 to fix elevators that were broken. I also created Maccess, which is an organization run by students with disabilities for students with disabilities. At Maccess, students taught self-advocacy skills and had peer supports in place.

BLOOM: Something I valued in your video was that you talked about the rights of people with all kinds of disabilities—including people with intellectual disabilities and mental illness. I often see people with one type of disability distancing themselves from people with other types.

Sarah Jama: I think it has a lot to do with funding levels. Autism Ontario is funded one way, the Ontario Federation for Cerebral Palsy is funded another, and all of these groups end up competing for support, fracturing community instead of building it.

Disability organizations aren't built to be part of a greater community that collaborates. The way to combat that, 100 per cent, is for everyone to come together and acknowledge that we're part of a larger community that historically has been left out of many parts of society.

We're also part of an ever-growing community. One of the leading causes of disability is old age, so everyone at some point will experience it. The sooner we come together to build a community that fits all people with disabilities, the sooner we’ll have a world that fits everyone.

BLOOM: You talk about how people in our culture confuse the rights of people with disabilities with their value to the economy.

Sarah Jama: I think that’s a faulty and harmful argument. So many people with disabilities can’t work, and do they have the right to exist then, if they can’t contribute? It’s similar to the way seniors are treated. Once they age out of the workforce, they're seen of as disposable.

We see conversations in the public media now about the right to assisted suicide. What about the rights to supports during life? Why does more funding go toward prenatal screening of Down syndrome—and I’m pro-choice—but not toward supports for adults with Down syndrome? The issue lies with institutions  pre-deciding where someone can access support. Who really deserves life, and who has the right to exist?

You have to earn your value, or you’re a burden on society. Couple that with youth with disabilities not knowing about their rights, or that there’s a community of people who have fought for their rights, and by the time they turn 18, depending on their capacity, they struggle with self-esteem, with having community and with understanding their worth. They don’t know that it’s their right to have help and support.

BLOOM: I liked the way you question our culture’s obsession with independence.

Sarah Jama: We’re obsessed with the idea that you’re worth more if you don’t need anybody. It’s a strange cultural phenomenon that doesn’t make sense. No one is truly independent from anyone else.

Mia Mingus has written a lot about interdependency, and how we should be able to go to our communities and find supports, and not see it as a loss of autonomy, but moving toward a larger collective of potential.

For example, nobody tends to be able to survive without going to a grocery store. But that food comes from a farmer. You didn’t package that food and put it in the grocery store. You’re dependent on the structures that are in place, and the community that puts that grocery store in place. We need to teach kids that we all sort of rely on each other, and that’s okay.

BLOOM: I noticed you're working with the Hamilton Wentworth District School Board to create curriculum to address anti-black racism. Is this something we need to work on with staff and families in children’s rehab?

Sarah Jama: Yes, I think so. I’ve created a black youth mentorship program for 40 black youth that meets monthly at Sir John A MacDonald Secondary School in Hamilton to talk about their worth and the way to navigate society and the supports in place for them.

On Feb. 12 we have Robyn Maynard coming to speak with them. She wrote Policing Black Lives, which is an acclaimed book on the history of policing in Canada. We also have Sandy Hudson coming, who is one of the founders of Black Lives Matter in Canada. On Feb. 25, the same youth will be meeting with black elected officials at Queen’s Park to talk about being black and navigating politics.

BLOOM: What advice would you give parents raising kids with a wide variety of disabilities?

Sarah Jama: As much as possible, have conversations around the history of disability in Canada, and how we got to a point where we have a federal piece of legislation. Who are the movers and shakers in our communities? What provincial legislation do we have? What communities have pushed for the rights of people with disabilities to exist equally and freely? It’s important for kids to grow up knowing that there’s a community, because a lot of us internalize our experiences. 

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