By Louise Kinross
Imagine you're a young filmmaker with multiple sclerosis living in New York City. Your documentary When I Walk has won an Emmy. You're able to live on your own and work, because New York State Medicaid covers 24-7 care aids who come to your home. Then your marriage ends and your wife and son move to Austin, Texas.
Your symptoms worsen: you can't move your upper body or open your hands and blurred vision makes it hard to see. Because there's no consistency in state-run Medicaid, moving to be close to your son means losing home care and moving into a nursing home, where you can't set your own schedule or have a personal aid.
Yup. Stay in New York so you can live at home and work, or move to Texas to watch your son grow up from an institution.
That's the dilemma that faces Jason DaSilva in The Disability Trap, a short film he made for The New York Times. In the film, Jason researches Medicaid care in Texas and its bordering states, and learns that his only option for round-the-clock care would be a nursing home. So he trials one.
The contrast in care, and environment, is stark.
What's the point of having health-care, if it's not portable within your country?
It would be interesting to know what the annual cost of care in a nursing home is, compared to the 24-7 aids who rotate shifts in Jason's home in New York.
The Disability Trap is a disturbing look at how Medicaid coverage varies wildly from state to state.
By Louise Kinross
Living in hospital for months of rehab after surgery can be hard for a kid and their parents.
Kim Hoben (above left) of Whitby says the kindness of neighbours, friends and family has made her stay at Holland Bloorview with daughter Riley, 8 (right), so much brighter. Riley, who has cerebral palsy, had surgery on her hips, femur and hamstrings and has been here for three weeks.
It started when Kim's neighbours collected hundreds of dollars from people in the community and her son's hockey team to cover gas and parking costs for the trips back and forth from the hospital.
Then the family received a box with a package for Riley to open every single day she's in hospital. The bags are dated, and a great way to start the morning, Kim says. "The presents are crayons, a pencil case, books, a blanket, slippers, nail polish, and a brush. Things that keep her busy and are so special and thoughtful."
The first weekend the family came home, they were met by friends lining the driveway with balloons and a 'Welcome home girls!' sign.
Help has also come in the way of friends offering to stay overnight at hospital with Riley, or spend time with her during the day. "On Monday night a neighbour slept over and stayed all day Tuesday. She took a vacation day to do it. My son was with my sister, so my husband and I went out to a restaurant. A teacher came one day so I could go home and watch my son play baseball."
Kim keeps friends updated on Riley's progress on Facebook and in a messenger group.
"The days are long here, and it's hard to be here 24-7," Kim says. "The support we've had is incredible."
Kim notes that her community has come up with specific ways to help, without the family asking for it.
Parents of children with disabilities often find that people say "Call me if there's something I can do," but don't take action.
When neighbours visit, Kim says, they bring food and snacks.
Riley says her favourite activities at Holland Bloorview are "physio and rec."
"The recreation programs here are amazing," Kim says. "Three times a day, they may do crafts, go to the gym, bake or play games. Riley likes to go on her own and do her thing, so it's also a break for me. Riley loves the student volunteers who work with the program."
As of yesterday, Riley walked with a cane for the first time. "Now she's swimming, which is great for her legs," Kim says. "She's like a fish in there."
Want to support a child and parent in hospital? Consider all of the practical ways the Hoben family has received support and take action!
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.
4:48 PM
Read the latest BLOOM. Don't forget to scroll down to see our shout-outs to lingerie brand Aerie, for celebrating models with disabilities and illnesses; Holland Bloorview parent Kristen Huys, for her Sesame Street video about kids of all abilities enjoying music; and CBC Docs, for the film Free Reins, about Patty McGill, a Nova Scotia woman who brings horses and healing together.
Photo of Jacob Trossman, 16, who has Pelizaeus-Merzbacher disease. You can read about Jacob and his family on his mother Marcy White's blog Cure PMD.
By Louise Kinross
Earlier this month JAMA Pediatrics ran a Viewpoint about why it’s hard to attract medical trainees to care for children and adults with neurological impairment. These are children with complex medical needs that stem from conditions like cerebral palsy or traumatic brain injury, or elderly patients with Alzheimer’s or other types of dementia.
Dr. Jay Berry, a hospitalist who works with children with medical complexity at Boston Children’s Hospital, and his wife Dr. Sarah Berry, who cares for elderly nursing home residents through Beth Israel Deaconess Medical Center, suggest a number of reasons clinicians may have an implicit bias against these populations: neurological impairment isn't curable or diagnostically interesting, it requires an enormous amount of time, and many specialists, to treat, and insurers in the U.S. do not reimburse well for it.
BLOOM wondered if there was a more basic bias against people with cognitive disability at play, even though not all children with medical complexity have intellectual disability. We interviewed Dr. Jay Berry.
BLOOM: Can you describe your work?
Dr. Jay Berry: Our group has primary care for about 3,500 kids. Most of my clinical work is as a hospitalist, so I primarily care for kids when they’re inpatients. I also run a perioperative program where we work with the surgeons and anesthesiologists to prepare kids from our complex care program for high-risk surgeries such as spinal fusion, and follow the kids after surgery in hospital. Research grants fund 100 per cent of my time, and I spend about 20 to 30 per cent of my time caring for kids.
BLOOM: Why did you choose this field?
Dr. Jay Berry: I had a pivotal moment as a med student when I was rotating through a pediatric pulmonology rotation at a children’s hospital. I thought I was going to learn how to take care of kids with cystic fibrosis and congenital brain malformations. But most of the kids we saw were children with neurologic impairment who had had big orthopedic surgeries and were taking a long time to heal.
I asked about that: ‘Why do we have all of these kids?’ And I was told: ‘Sometimes these kids fall through the cracks. The orthopedic surgeons are thinking about hips, and the neurologists are thinking about seizure management, but pulmonologists want to see how everything fits together in the context of a child’s neurologic impairment. We want to wrap our heads around the entire child, to best help them.’ That was compelling to me.
BLOOM: How do you describe severe neurological impairment?
Dr. Jay Berry: Whatever is going on in the neurological system is severe enough that it’s affecting major functions such as walking, talking, breathing, digesting food, using hands and sometimes thinking. It interferes with their quality of life and being able to do what they want to do.
BLOOM: Do the children you see speak, or have a different way of communicating?
Dr. Jay Berry: Some children have fantastic expressive speech and others use augmentative communication devices or other ways to assist their speech. We also have children whose parents are amazing at picking up on the nuanced way the children communicate through eye movement and blinking and facial expression.
BLOOM: So some of the children are cognitively intact?
Dr. Jay Berry: Yes. We could have a child who is trached and vented due to neuromuscular impairment who is cognitively normal. One of the reasons we wrote the piece, for providers who aren’t familiar with this work, is because every kid is different really. We misjudge these kids when we lump them all together.
BLOOM: You say in your piece that there’s a miniscule number of doctors trained to work with these kids. How do their families find care?
Dr. Jay Berry: Unfortunately, the system isn’t proactive enough to have an intake system across the country where if I have a kid with neurological impairment in rural Alabama, we tell the family ‘We need to get you plugged in with these local guys.’ It’s often word of mouth and parents talking to parents. What happens most, which is not ideal, is families that are diligent say ‘I’m not going to stop till I find a provider who will care for my child,’ and eventually they find folks with experience. But it’s very haphazard.
BLOOM: So the ideal is to have a doctor who follows and coordinates the big-picture care of a child, but when families don’t have that, they may be going from specialist to specialist?
Dr. Jay Berry: Absolutely. I would hypothesize that maybe even the majority of families have that experience. If you’ve never had someone who's thinking of the entire picture and making sure all of the providers work in a concerted effort, you don’t know what you’re missing.
BLOOM: You suggest people aren’t attracted to this work for a variety of reasons, including that there isn’t a cure.
Dr. Jay Berry. I think so. We need a shift of mindset. It’s part of the human personality to want to be problem-solvers. There’s a sense of: ‘I can find a problem in five minutes. If it’s an appendix, I can take out your appendix. I’m done.’ With chronic disease it will never go away. What we need is another type of problem solver who says ‘We may not be able to solve this problem, but I can work with you on it, even if that takes decades, and help you, and I’m not going away just because we can’t fully tackle what’s happening with your body.’
It’s the ‘long-term-ness’ of this relationship that allows you to be more knowledgeable and a better clinician for the child. You keep learning more as time goes on. This holds true even for inpatients. Most of my work is taking care of kids when they’re hospitalized. But these kids are hospitalized so frequently I could see the same child four to five times a year. Having that memory and that experience—of last time we tried this, and it didn’t work—that continuity, is important.
BLOOM: You note in your piece that clinicians may not work with kids with medical complexity because they don’t find them diagnostically stimulating. What disease is?
Dr. Jay Berry: In pediatric training, it would be a rare, acute disease, like Kawasaki disease. It presents in an interesting way. The symptoms come together, but are subdued at first, and you have to recognize them. When you do, and the diagnosis is made, you know exactly what to do, and the disease is gone.
BLOOM: Is it something about it being rare that makes it interesting?
Dr. Jay Berry: Yes. A lot of pediatricians are drawn to pediatric disease because in the adult world you’re dealing with a lot of high-blood pressure and diabetes, and children tend to have more rare things that can pop up, and you have to have your radar on all the time. But if you have a new infant that joins a practice after being in the NICU due to a hypoxic event at birth, they go on to have cerebral palsy. There’s a sense of ‘I know what happened, they have CP, that’s never going to change.’
BLOOM: Why is treating kids with medical complexity not well reimbursed by insurers?
Dr. Jay Berry: Our U.S. health system is still based largely on a fee-for-service model. You’re incentivized to see large numbers of children in an outpatient clinic, as fast as you can. Reimbursement from private and government payers tends to be less for children than adults. As outpatient pediatricians, we struggle with paying the electricity bill and keeping enough revenue generated from payments to keep our nursing staff. I could see six kids over the next hour with ear infections, or I could see one child with CP who is coming in with respiratory distress, who will take me an hour, or even longer, to try to figure out what is going on. But I won’t be reimbursed the same for seeing the kid with CP.
BLOOM: In your article you mentioned discriminatory events towards children with medical complexity in the U.S. Were you speaking about cuts to Medicaid?
Dr. Jay Berry: No. We were thinking about disparities in health care, and in life, based on race and ethnicity.
BLOOM: So sometimes families can’t access the care they need based on race?
Dr. Jay Berry: Yes, we do see that, which is really troubling. There’s a lot of emotionally charged thinking here around race and ethnicity. If you throw the interaction of race in with neurological impairment—those kids may be the most vulnerable to not receiving the care they need.
BLOOM: Because they have two biases against them?
Dr. Jay Berry: We have areas of the U.S. where outpatient pediatric practices will not accept any patient using government insurance. They will not enroll any of these children in their practice. You may be a child that has CP and needs a lot of ongoing care, and it’s a double whammy.
BLOOM: Separate from some of the other disincentives to working with children with medical complexity, is there a more basic bias against working with people with mental disability?
Dr. Jay Berry: I think you’re spot on. That gets back to our earlier discussion about out how some people lump all children with CP together, and make judgments before assessing what cognitive capacity they have. Or they may be thinking—‘they’re in a wheelchair, and it will take forever to get them into my office, or I can’t get them on the table to examine them.’ Or ‘it’s going to be hard to assess what’s wrong if they can’t communicate, if they can't tell me.’ All of these things make people apprehensive to care for these kids.
BLOOM: Do they ever have discussions in medical school about why people want to go into different fields? I think if someone listed off the concerns you just did, which are really prejudices, some students would start objecting.
Dr. Jay Berry: There’s so much curriculum to cover in medical school. So much of medical school and residency is acute care, and trying to wrap your head around the treatment for an acute condition. If you upfront said to students: ‘Let’s discuss why you have an affinity to work with certain kinds of patients.’ And then after hearing what they said, asked ‘Is it okay to have those perceptions? Are they accurate?’ I think some would say ‘I’ve never thought about it that way, and I don’t want to practise medicine that way.’
There has to be some kind of wrap around to challenge trainees to think about being comprehensive in caring for kids with complex needs—to think about all of the child’s health needs and how to be a team leader with health providers.
BLOOM: How are relationships with your patients different from those doctors have in acute care?
Dr. Jay Berry: Over time, they become so much richer and deeper than on the acute-care side. However, there’s a ‘high’ you feel on the acute side, an instant gratification when you can help someone really quickly. It’s very attractive.
Over the long-term with a family with a child with neurological impairment, it’s inevitable that some not so positive things will happen—either physically, or the health system will let them down, or I will let them down.
We try to be proactive about that, to have conversations with families where we mention some of the things that might happen. Even though the families obviously aren’t happy when they do, they tell us ‘We respect you for being transparent, and telling us this was a possibility.’ That takes our relationship to another level.
Treating acute differences is kind of like having an incredible first date, and having a long-term relationship with a family with a child with neurological impairment is more like having a marriage.
BLOOM: You said in your piece that clinical research about complex kids is lacking. What’s an example?
Dr. Jay Berry: If we look at the perioperative care we’re doing here, where we have the structure of having a person who is in charge, and managing the care for these complex kids, does that make a difference, and can we quantify that difference? That entire body of literature is almost non-existent.
BLOOM: So you mean make a difference in family satisfaction or patient outcomes?
Dr. Jay Berry. There is some literature to support that. But having the funding support to be able to do health-system type interventions, the methodology to conduct these studies is very tricky. It would be difficult to randomize children with scoliosis with whether they got a spinal fusion or not. You can’t double blind people to that, and ethically it wouldn’t fly. But when we look at the decision to undergo major spinal surgery for kids with scoliosis, we don’t know what happens to the kids whose families decided not to do that. Something as basic as that we don’t have.
BLOOM: Why is it not as attractive to fund this kind of research?
Dr. Jay Berry: From a funding standpoint, it’s not as attractive to say ‘We’ll invest $50 million to really advance decision-making for spinal fusion with kids with scoliosis,’ as it is to say ‘We’ll invest in basic science research to discover a gene that will prevent scoliosis.' It’s easier to migrate towards the sexier things.
The health care costs for children are miniscule compared to adult patients, so kids are already kind of at the side of health care. And now we’re talking about a small population with neurological impairment who need a nuanced surgery—they’re not on the radar.
BLOOM: We interviewed Dr. Eyal Cohen at SickKids about his study using a Danish registry that showed mothers of children born with major anomalies had a 27 per cent increased risk of death when compared with mothers of children born healthy. How well do we support parents of children with medical complexity?
Dr. Jay Berry: Not well. I think we struggle so much just to find the time to take care of the kid's physical health, and if we get that okay, we’re hopefully addressing the child’s mental and emotional wellbeing. And then, if there’s time left over, we think about the parents.
What we’re seeing here with Eyal is so much unfortunate loss of employment, financial struggles, marital discord. There are so many huge things the families are facing, in large part because we tend to throw so much back on the parents.
BLOOM: Our families have a lot of problems with getting home-care nursing, so often they don’t have enough night nursing hours or the nurse cancels and there’s no backup. So at a practical level, if parents aren't getting any sleep for days and days, it’s hard to be able to function, let alone be happy. But I guess what you’re saying is that you have a hard enough time supporting all of the needs of the children.
Dr. Jay Berry: Not supporting the parents it is an atrocity. You’re totally right. It’s just bandwidth, and if I find a parent who’s struggling, what can I do to help them? It’s really challenging to help them solve their problems, and get their lives in shape. It’s ridiculously difficult.
We do find our palliative care team can be very effective in helping families navigate through that space, and we work a lot with them to get that going.
By Louise Kinross
Carol Eastwood wanted to go on a family trip with her husband and two sons. “I have a 27-year-old son and a 20-year-old son who uses a wheelchair, and I wanted all of us to go on a trip where no one would be left out,” she says.
Carol’s son Ian Steadman, 20, like the rest of the family, is a sports fanatic. He studies sports management at Niagara College, plays sledge hockey with the Halton-Peel Cruisers, swims competitively with the Milton Mighty Tritons, and loves wheelchair basketball and nordic skiing.
In 2010, Ian and his mom were in Whistler, B.C. to watch the Paralympics and Ian rented an alpine sit-ski for the day from Whistler Adaptive Sports Program. “I fell in love with Whistler then,” Ian says.
Carol heard that Whistler Adaptive had summer programs and decided to organize a week’s long family trip around them.
Last month they flew to Vancouver and rented a van to drive up to Whistler, where they stayed in an accessible condo in the upper village. It had a paved, accessible path down to the village.
The family was able to rent all of their regular and adapted equipment—for hiking, biking and kayaking—through Whistler Adaptive. “We wanted to do these sports because we could do them together,” Carol says. “If we couldn’t do something together, we didn’t want to do it. “The program also provided wonderful volunteers who were experts in each adapted sport and knowledgeable about the area as well.”
They began with hiking. The family met Whistler Adaptive at a sports complex where they picked up a trail rider they were renting for Ian (see photo below). It’s like a chair on one wheel with metal attachments at the back and front that can be pushed and pulled by volunteers. Think “chariot!” Carol says. Two volunteers were provided, but Ian’s brother John decided he’d like to help and push.
“I enjoyed the experience of being on the mountains and the trails, especially since it’s something I might never have been able to do,” Ian says. “It was a reclining chair and I held onto the sides for support. The volunteer knew all about the history of Whistler and the mountains and of a train wreck there.”
On another day, the family went kayaking. They met the folks from Whistler Adaptive at Alta Lake. “There was an accessible path down to the dock, where a kayak volunteer and all of our kayaks and protective rain gear were ready to go,” Carol says. Ian used a tandem kayak with the volunteer and the family spent about two hours exploring the lake.
“Because I wasn’t supporting Ian, I could really relax and enjoy the activity,” Carol explains. “That’s the thing about this trip—we could all enjoy the activities.”
Next, the family took an accessible gondola up Blackcomb mountain. “You just wheel in, like an elevator,” Carol says.
At the top, Ian and his brother John decided to take the Peak 2 Peak gondola with a glass floor across to another mountain. “My mom doesn’t like heights,” Ian explains.
Ian’s favourite activity was biking. The family was outfitted with bikes at a bike shop, including a hand bike for Ian.
“On our first day, Daniel, a director at Whistler Adaptive, took us out and showed me how to use it,” Ian says. “It had gears as well as a speed-control assist machine that I could turn on for certain hills.”
“I saw how fast he was going on it, and I was having conniption fits,” Carol says. “I thought you were going to wipe out, but you never did. It was great to see my two boys doing an activity together at the one who has got the ability’s speed and level.”
The brothers liked it so much that they went out on their own the following day. “I haven’t been on a bike in a while and it was nice to experience something just with my brother,” Ian says. “It was intense. We went round the lake six or seven times.”
Renting adapted equipment is a bit more expensive than regular equipment, Carol says. “I think the hand bike was about $45 and our bikes were $20 each.”
After a day of activity the family went back to their condo to shower and head out for dinner. They strolled along a paved path from their condo to the village, where the restaurants, hotels and boutiques were accessible. “Everyone seemed to be comfortable dealing with wheelchairs,” Carol said.
Ian hopes to apply to volunteer or work at Whistler Adaptive next summer. “He was so pumped at the opportunities for having a disability yet working in the field of sports—whether abled or disabled,” Carol says. “They were integrated.”
Carol says booking a trip before the high-season in July made it more affordable. She was also able to get her Air Canada air ticket covered by going as Ian’s attendant.
Melissa Ngo (far right) and Daniel Scott (second right) run Holland Bloorview's sibling workshop. Here they appear with Liam Durack and Brittany Rogers, who are adult siblings that participated in a Young Carers' Forum hosted by the Change Foundation last year.
By Louise Kinross
“What should I do if a sibling might embarrass [me] and it might affect [my] friends?”
“What do you do…or say to someone who says ‘you’re so r-word,’ or refers to someone as autistic who isn’t?”
“Have you ever been really angry with your sib?”
“How do you participate in their care?”
These are a few questions children with a brother or sister with a disability asked adult siblings at a workshop in May at Holland Bloorview.
“The purpose is to connect siblings of people with disabilities so they can have a network and can ask questions in a safe space,” says Melissa Ngo, a family support specialist who has a brother with a disability. “It’s an opportunity for children to discuss with their parents any worries, concerns and positive experiences they have.”
Twenty-five years ago, June Chiu, then a parent of a child with a disability, got together with two other parents and asked Holland Bloorview staff to host an event for siblings and their parents—which they did. “We just intuitively felt that the sibs in our families needed a forum, a safe space to identify and find common needs and support,” June says. “Like parents, sibs needed support—a place to talk, ask and learn that their feelings and questions are okay. It was an opportunity for parents to be more aware of sibling needs, especially when planning for the future.”
Later in the 1990s, June Chiu became a family support specialist at Holland Bloorview and formally launched the annual sibling workshop. It’s now run by Melissa and Daniel Scott—staff who are both siblings themselves.
“My whole life was impacted, and continues to be impacted, by being a sibling of someone with a disability,” Melissa says. “A lot of the decisions I make, and a lot of my personal characteristics and personality, have been shaped because I’m a sibling.
“As a young child, I grew up learning a lot about caring and compassion—and understanding what that looks and feels like. I also know what barriers look and feel like to my family. I’ve always been very aware of other people, and I see that as something that’s an asset. Now, as an adult, the severe lack of systemic supports from the government, and health care, as my brother grows older, is something that I worry about. I think the system needs to do better in supporting adults with disabilities and their families.”
The two hour sibling workshop in May drew 32 children, adult siblings and parents. It began with a short presentation from the Young Carers Program on some of the upsides and challenges of having a sibling with a disability. Then children aged seven to 14 broke into one group, and adult siblings and parents into another. The children “do activities and discussions that centre on the family, and have a safe space to talk for about an hour,” Melissa says. At the same time, parents in the other group have an opportunity to ask adult siblings questions. Then the younger participants rejoin their parents, and ask the adult siblings questions.
“It does get emotional,” Melissa says. “Parents are worried about the same things that sibs are worried about. Parents are very aware that sometimes they have to spend more time with the child with a disability, and they worry about their other children.”
Organizers select a diverse panel of adult siblings—age-wise and in terms of the diagnoses in their brother or sister. They also include adults whose siblings have died. “I think the great thing about our workshop is that we tell everyone right from the get-go that we’re not going to 'rose-colour' any of the information.” Melissa says. “It’s very honest and from the heart. I’ve heard of other workshops where they don’t talk about the hard or challenging things sibs go through. They try to encourage one way of thinking. We validate the diverse experiences siblings have.”
Children like meeting others who “get” their situation, Melissa says. “The most impactful thing I’ve heard from parents is that they will continue the discussion at home. Because we’ve opened the conversation, they may have learned something new about their child that they want to keep talking about.”
Some parents keep a question box at their house and encourage their children to write down anything they want to talk about and put it in the box. “Parents can encourage children to say things that might be really hard for them to say, or that they might be afraid to say,” Melissa says. It's good to check in regularly with kids to ask if they have questions, ideas or feelings about having a sibling with a disability.
Siblings may want to be involved with their brother or sister in different ways, and that can change as time goes along. It's also great to bring the child with a disability into discussions. “We also encourage parents and caregivers to model self-care. Because when you take time to do things you enjoy, siblings can see that they don't have to feel guilty about doing the same thing, especially in the future.”
Melissa and Daniel have applied for a No Boundaries grant that would support a program for siblings that would be run at the same time as Holland Bloorview’s education workshops.
By Louise Kinross
Anna Marie Batelaan is a social worker at Holland Bloorview who works with children who have a brain injury as a result of trauma or illness—and their families. She provides emotional counselling and helps families connect with resources. “We recognize the whole family is impacted,” she says. “With acquired brain injury, the child is usually developing typically, and the brain injury has turned their life upside down.” One of the tools Anna Marie uses with parents is mindfulness meditation. She and social worker Dagmara Urbanowicz are bringing a new mindful self-compassion program to staff in the fall.
BLOOM: How did you get into this field?
Anna Marie Batelaan: I’ve always been interested in giving back and helping others. My first social work jobs were working with young offenders in a group home, and working with homeless women. My dad was an engineer with the National Research Council who made aids for people with disabilities. He worked closely with what was then the Hugh MacMillan Centre. My sister is a social worker and my brother is a fireman. We do a lot of helping in my family.
BLOOM: How would you describe your job?
Anna Marie Batelaan: Social workers do a lot. We’re there to help navigate young people and their families through the system. We help them understand the impact of brain injury now, and what they need to think about as they get older. We look at the big picture of things. We do a lot of emotional counselling to help them cope and adjust and move forward with their lives. We also provide them with funding resources and supports in the community.
BLOOM: What are the joys?
Anna Marie Batelaan: I find it extremely rewarding when families and young people come back to tell me how they’re doing. Last summer, one of my first clients, who I saw here when he was nine, came back at age 27. He wanted to visit and tell me what he was up to, and was thinking about volunteering here. It’s seeing young people and their families find a way forward that is still going to bring them a lot of happiness and joy. It’s being able to be a small part in their recovery at a time when they need help.
BLOOM: What are the challenges?
Anna Marie Batelaan: In health care we’re often asked to do more with less, and that can be a challenge when you know that what you’ve done in the past was really successful. For example, we used to be able to visit people in their homes and spend the time they needed to help with their adjustment on the outpatient side. Often it's six to 12 months after going home from hospital that people realize the brain injury is not going away. Home visits allowed us to see more easily how they were coping, and were very appreciated by the families. But when we changed our model of service delivery, we stopped doing home visiting, because we’re so busy with inpatients.
BLOOM: What emotions do you experience on the job?
Anna Marie Batelaan: The whole wide range of emotions. We’re here for the tears and sadness, but also for the laughter and excitement and joy of progress. Sometimes frustration comes up as well.
BLOOM: How do you cope with the emotional side of work?
Anna Marie Batelaan: I have strong mindfulness and compassion-based practices. I’m in my 10th year of mindfulness, and I’ve done self-compassion practices for three years. That’s helped me to really be there for myself. I’ve learned how to soothe myself in difficult emotional times, but still be present for clients and families. I’m not perfect. We all ‘fall off the cushion,’ as they say. But you’re kinder and gentler to yourself, and you’re able to get back on.
BLOOM: What are the practices that you do?
Anna Marie Batelaan: I do a formal daily practice of sitting on a cushion and doing a breath practice or a body scan or a loving-kindness meditation.
I think I’m getting much better at informal practice, where I catch myself in the moment and stop and take a breath and ground myself. I often do a three-minute breathing space in the transition between one client and another, so I can let go of what I was working on with one client, and be set up to work with the next one. There’s research now showing that clinicians who stop and do that have better outcomes with their clients and families, even though they aren’t aware that you’ve done it.
BLOOM: You and Dagmara recently took some training. Can you describe that?
Anna Marie Batelaan: It’s called Intensive Mindful Self-Compassion Teacher Training, and it was the first time it was offered in Ontario. It’s an international protocol started by Kristin Neff and Chris Germer. It’s training to lead an eight-week group where you teach compassion-based practices. These are compassion-based practices that involve mindfulness, self-kindness and common humanity.
BLOOM: How would you describe each component?
Anna Marie Batelaan: I like Jon Kabat Zinn’s definition of mindfulness. He says it’s paying attention, with intention and without judgment, to the present moment. It’s not getting caught up in worries of the future or thinking about the past.
Self-kindness is how we approach ourselves with more kindness and appreciation and care. The common humanity is that we’re not alone in this. All of us struggle, we all have challenges, and when we can recognize that, we can allow ourselves to take better care of ourselves.
BLOOM: Have your thoughts about disability changed in the 18 years you’ve been here?
Anna Marie Batelaan: I don’t think they have changed much. My views were shaped by my dad, who worked with so many people with disabilities. He would show me paintings by people who had painted with their toes, and I’d say ‘Wow, that’s so cool.’ He came into my grade school for Show and Tell and talked about the aids he designed. One was where you blew threw a straw to type.
BLOOM: What have you learned from the families you work with?
Anna Marie Batelaan: Families continue to teach me every day. They’re amazing in how resilient they are and how they take care of their children and find a way forward. If I was in their shoes, would I have the same amount of resiliency?
I like it when we do groups with families and they can share and learn with each other. The best way forward for families is to hear from another family: ‘This is the way you might want to try it.’
BLOOM: Do we run a group like that?
Anna Marie Batelaan: Right now there’s a parent group that runs at the same time as our Helping Hand constraint-induced camp for kids. It brings together inpatients and outpatients—and even outpatients from five to 10 years ago. We have themes and discussion, but the best piece is the learning they get from each other. It’s neat. They walk away feeling like there are common threads in all their experiences. They come from all over Ontario, and often stay in touch on e-mail or with FaceTime and texting.
BLOOM: Why did you decide to bring mindfulness to our parents and staff?
Anna Marie Batelaan: I’d been practising on my own and found it so helpful that I wanted to share the benefits. Five-and-a-half years ago I began a mindfulness group for inpatient parents. It ran for about five to six months and then staff starting asking me if I’d do one for them.
BLOOM: What do parents and staff tell you they get from these sessions?
Anna Marie Batelaan: They say they’re better able to be present, to take care of themselves, to regulate their emotions and make better decisions. Research shows that when you’re present, you’re happier.
Research also shows that 47 per cent of the time we’re not focused on what we’re doing, and when we’re not focused, we’re pretty unhappy.
BLOOM: Why is mindfulness and self-compassion important for parents of children with brain injury?
Anna Marie Batelaan: A lot of parents put their child first and they’re way down on the priority list, to the point that they’re not taking care of their basic needs—sleeping, eating well, or even taking breaks from the bedside. Mindfulness and self-compassion can help them start looking at what’s happening to them, and to understand that they need to take care of themselves in order to better take care of their child.
BLOOM: How have you changed as a clinician since you began mindfulness?
Anna Marie Batelaan: I think I’m calmer. In the past, I felt my emotions could take over sometimes, and I felt more anxious. Now I can be more present for myself and others. I'm better able to look at what I need to accomplish in a day, and I prioritize my work easier. I feel I can be a better listener and speaker—as far as choosing what I say and how I say it. I think I’m a better colleague.
BLOOM: Can you talk about the new mindful self-compassion group for staff?
Anna Marie Batelaan: Compassion is one of our founding values at Holland Bloorview. But to be compassionate, we have to complete that circle of compassion by being kind to ourselves. That’s where it starts.
The course will be three hours a week over eight weeks. We’ll look at how to work with our inner critic, how to become our closest ally, and how to better be able to be there for our clients, colleagues and our own families.
BLOOM: Can you describe one of the practices?
Anna Marie Batelaan: One of the ones I like best is the self-compassion break. You learn how to work with a small difficulty and, as you gain the skills, you can apply it to the bigger challenges in your life. It’s a way to deal with the pain that all of us carry within ourselves.
By Louise Kinross
Julia Gray describes her work as a post-doctoral fellow at Holland Bloorview as “the humanities reaching into rehab.” Julia trained as an artist, playwright and theatre director and did her PhD in education at the Ontario Institute for Studies in Education (OISE) at the University of Toronto. Before coming here she worked with Ontario rehab researchers to write and direct a play called Cracked—about how we stigmatize people with dementia. “The researchers were interested in what they termed ‘the discourse of tragedy’ around dementia,” Julia says. We talked about how a similar devaluation happens to people in the wider world of disability.
BLOOM: How do you describe your research?
Julia Gray: I’m interested in thinking about what it means to be disabled and/or able-bodied, and how art-making comes into that conversation. For example, I’m working on a study about the therapeutic clowns.
BLOOM: I loved the research here that showed that children who can’t communicate conventionally respond at a physiological level to the clowns.
Julia Gray: Yes, research here and elsewhere shows tangible outcomes, but I’m interested in the art part. What techniques are the clowns using, and how does what they’re doing as artists link with those outcomes? What do kids with disabilities appreciate or value in that art part? This will be a pilot study where we observe 30 kids playing with the clowns, then debrief with the clowns on exactly what they were doing with the kids. We’re also hoping to interview three to five kids to ask them what is special about the clowns, and what helps them?
BLOOM: Why is there a need for this research?
Julia Gray: My research focuses on the humanistic side of disability and the humanistic side of care. As a critical researcher, I try to flip over assumptions that we have. For example, we often think art has therapeutic value—that it can help cure or fix something. And my thought is: ‘Really? Does it?’ Do we have to assume that it always has only medical outcomes? Can’t it just be part of being in the world? Isn’t it enough for art to be joyful? As humans, we create things and that includes art sometimes, and kids with disabilities do it, too.
Medical outcomes are like an awesome bonus. If a child’s anxiety or depression is reduced, or their functional movement is improved—awesome. But what about all of the other stuff we’re missing, like joy, expressing sadness, producing something, or playing?
BLOOM: It does seem like a lot of our outcome measures are related to function, not happiness.
Julia Gray: That’s rehab’s roots, and it makes sense that that’s the frame and the assumptions people bring to the work. We need to think beyond it. This is where my supervisor Barbara Gibson’s work is really critical in asking what the purpose of rehab is philosophically. How do we help people live their best life? What are the assumptions that we’re bringing about what we think a better life is? What are we valuing?
BLOOM: What do you love about working here?
Julia Gray: I really love working with my supervisor. Barb is genuinely interested in helping me learn things and build my skills. She has a wonderful balance between being genuinely kind and critiquing, challenging and pushing me in the most supportive way.
I also love the way Holland Bloorview is genuinely interested in improving the lives of kids with disabilities. Many clinical settings are not like that. Here, people are receptive to different ways of working and doing things. As an arts person, I feel people are genuinely curious about what I bring, in conversation with science. I’m humanities reaching into rehab.
BLOOM: What is most challenging?
Julia Gray: That cross-paradigmatic conversation!
BLOOM: Do you feel like you’re talking different languages?
Julia Gray: Completely. The ways things are measured, or your outputs as a researcher, are done in a different way. There are outputs that aren’t on the radar of scientific research—like artistic creation, which is a kind of exploration. We’re in the process of having a discussion about how do we value that in a scientific research institute? And what is it that is valued?
For example, a lot of humanities- and arts-related work will be published in journals that have a low impact factor. The impact is in concepts and ideas and criticizing cultural norms and assumptions, not objective research or technology. Of course, all of these things can impact services or how care is provided, but the impact is different. To try to assess humanities with a scientific impact factor is challenging. Barb and I, and lots of other qualitative and arts researchers, are working to find ways to value, frame and talk about qualitative work. But we want to have that conversation without trying to fit it into dominant forms or frames.
BLOOM: What did you do your PhD in and why?
Julia Gray: I did my PhD in education at OISE. In my practical work with health researchers, I felt I wanted the education degree to allow me to learn more about social sciences and qualitative research, since my background is as an artist.
BLOOM: Did you have experience with disability before coming here?
Julia Gray: Before coming here my research was in dementia, which is cognitive memory loss. As a teenager, I worked at a summer camp with kids with disabilities. I was a special-needs counsellor who worked to integrate kids with special needs into the program. The emphasis was on helping kids be kids.
BLOOM: How did your play Cracked come to be?
Julia Gray: I had worked on a previous play called After The Crash about brain injury, and one of the investigators told me there was a group of her colleagues interested in doing a play about dementia.
BLOOM: What did they hope to achieve with a play about dementia?
Julia Gray: They were interested in what they termed the ‘discourse of tragedy’ around dementia: That we value cognition so much that if you lose that, you’re devalued as a human being, and you could only be in the world in a negative, sad way.
They wanted to look at how assumptions about dementia being tragic affect how people are cared for, and the way long-term homes are built and run. They didn’t want to address policy alone, or only the way health care providers are trained, but to look underneath at cultural beliefs around stigma. Why do we have to assume that dementia is sad? It’s not to say it’s not difficult, but is it only sad? Why can't it also be about just being in the world, being in nature and enjoying the sunshine on your face?
BLOOM: What is the play about?
Julia Gray: It follows two characters who have dementia. With one character we see how her relationship with her children changes, and with the other we see how her relationship with her partner changes. We see both characters move from the initial diagnosis through to their life in long-term care.
Part of what we see is the way these characters thrive in their lives. We see them join a political activist group and work with their MP to develop a national dementia strategy. We see one move into long-term care and make new friends. So the care home isn’t just this dour, cavern of death. It’s vibrant, and the character grows and learns, which is not what we expect to see.
We see that the things that are causing this character to shrink are not related to her disease, but to the assumptions people bring, and the way people stigmatize her. Every single scene in the play, except for one, is based on stories we’ve heard from people living with dementia and their families and clinicians.
BLOOM: Where was the play seen?
Julia Gray: We’ve toured it to many conferences, long-term care homes and community settings. Several performances were for the general public. It was also filmed and is available on DVD.
BLOOM: So you were trying to tackle stigma on a broad scale?
Julia Gray: We wanted to look at the broad, underlying assumptions we have about memory loss, and how they manifest in the ways we stigmatize people with dementia. We wanted to show that life could be different, that full lives are possible.
BLOOM: Is this a model we could use here at Holland Bloorview?
Julia Gray: It is a model we could use with disability stigma. Social justice and reducing stigma are right in our strategic plan, and the arts are fundamental to addressing assumptions that we don’t even know we have. We assume that something is a normal way of seeing the world—but why? And how is this thought or assumption possibly harming people? Art can provide that kind of insight, in a way that being lectured to about 'not stigmatizing' can’t.
BLOOM: What did you learn from your work on Cracked?
Julia Gray: It’s very easy to get caught up in what it means to live a good life and to be successful. I’m always challenging myself to be aware of my own assumptions about what that means, and to reflect on assumptions that I bring to my work. It’s a constant. You never know enough. I learned that any social justice or anti-stigma work is about relationships—it’s not about you. It’s about listening and acting and doing things in ways that are as supportive as possible for everybody.
BLOOM: Did doing the play change how you feel about diagnosed with dementia yourself?
Julia Gray: Hugely. I thought a lot about it. The thing that scares me the most isn’t having dementia, but the way people will treat me, and going into care. I know I can live a good life. It’s whether other people will make assumptions about me, and treat me poorly when I’m completely reliant on them.
By Louise Kinross
Beth Haller is a bit of a celebrity in the world of disability and journalism. I first learned about her when I followed her Media dis&dat blog, where she posted timely international stories relating to disability. Beth is a professor of journalism and new media in the Department of Mass Communication and Communication Studies at Towson University in Maryland. She’s written a couple of books—including Representing Disability in an Ableist World: Essays on Mass Media. Her Facebook page with the same name is where she posts most frequently now. It's a fabulous resource for anyone interested in disability issues. Beth has also taught in disability studies programs, including York University’s Critical Disability Studies graduate program in Toronto. She dropped by a week ago and BLOOM got to ask her some questions.
BLOOM: How do you describe your research?
Beth Haller: It’s about how the media represents people with disabilities. Originally it was news media, but now it includes all kinds of media—social media, entertainment, advertising.
BLOOM: How did you get interested in disability?
Beth Haller: In the 1980s I was a medical reporter in Texas. I did a series of stories on Down syndrome. At the time, I didn’t have a disability consciousness, even though disability has always been in my life. My next-door neighbour that I grew up with had a little brother with an intellectual disability. When I wrote the series on Down syndrome it was at a time when there was a growing understanding about early intervention, and people weren’t being thrown away in institutions.
BLOOM: How did that series influence you?
Beth Haller: I’ll never forget one story I did with a rural family who had an adult son with Down syndrome who was in his 30s. He was the oldest child of four. The dad told me about going to the hospital and being so excited that his wife has just had their first baby. Then a doctor comes in and says ‘We’re not going to give you your baby. We’re taking him to an institution. It’s the best thing for him.’
This was a working-class guy and his wife has just had their first child, and they’re trying to take it away. A lot of educated parents at the time went along with what the doctor said. You were told that you were a bad parent if you didn’t institutionalize a child with Down syndrome.
These parents took their son home. People who were working class didn’t have the option of nice facilities to place a child in, and they tended to be in a more familial structure.
When I visited, the father and son were like roommates and best friends. The mother had died and the dad was retired and the son was working. The son and dad had lots of interests in common. It was meant to be.
BLOOM: How did you get into researching disability coverage in the media?
Beth Haller: In the 1980s, to be a print journalist was to work 80 hours a week. I decided to take a break from journalism and did a master’s in science communication at the University of Maryland. I was taking a magazine writing class and decided to do a story profiling someone that didn’t speak my language. It was 1989 and it popped into my head that Gallaudet University was one year after the Deaf President Now movement.
I got really interested in the deaf community and how it was covered in the media. I was doing master’s level classes in research, digging into whether any mass communication researchers had done anything about people who were deaf or had other disabilities. People in the mass media communication world weren't that disability conscious. They didn't think about disability in the diversity sense. There’s was great coverage about how media have treated people of colour and the LGBTQ community, but they still hadn't latched onto disability as another part of diversity.
I did my thesis on how the Washington Post and New York Times covered the deaf community before, during and after the Deaf President Now protest. You could see the difference after they were covering the community for six days straight. Journalists are educable. Most want to do a good job, and they’re learning while doing the story. I think it’s often editors who are stuck in the medical model. Journalists get the identity rights movement.
Later I did an internship on the copy desk at the Baltimore Sun and I saw an article about The Disability Rag on the AP wire. [It's now known as Ragged Edge Magazine]. I subscribed, and in one of the first issues in the classified ads were three lines about a Society for Disability Studies meeting in Rockville, Maryland. I didn’t know that field existed, and I got plugged into it fast.
BLOOM: How would you say media coverage of disability has changed over the years?
Beth Haller: When I went to early conferences, disability studies researchers weren’t doing anything about the media at the time. They’d say ‘That’s nice that you’re looking at media. We have bigger stuff to do, like get people into schools.’ I’d say ‘How do you think you’ll do that without getting public opinion on your side?’ Over time, academic researchers started seeing my side of the fence—that media are important. Now, with social media and blogs and the Internet, people with disabilities can push their own agenda. Everything has flipped to the advantage of the disability rights community. They can get their issues trending, and journalists are trolling, looking for story ideas on what’s getting buzz. Because of the collapse of the traditional news media, there are a third less journalists. I think the journalism world is very open to covering the disability world now. The op-ed series written by the disability community in the New York Times is an example.
BLOOM: I love that series!
Beth Haller: It’s really given disability issues credibility and power.
BLOOM: Something that’s so interesting to me is how language around disability has evolved. When I first came here in 1999, we only used person-first language. But now disability advocates are running campaigns like ‘Say the word—disabled.’
Beth Haller: Language is still such a hot button issue. I tend to flip back and forth between people-first and identity-first. If I’m talking to an activist who wants me to use identity-first I use identity-first.
BLOOM: What if you ask someone how they would like to be referred to, and they use a descriptor that you believe is demeaning?
Beth Haller: You have to honour what people want. If I do an interview on the phone or in person, I will ask the person. You may follow Andrew Gurza, who calls himself 'Your #1 Queer Cripple.' You can tell someone that if they use a certain term, some people may come after them about it. But you have to use what they want.
When I talk to journalism people, I tell them disability is on every beat. If you’re an education reporter, are the schools accessible? Do they have a quiet room for autistic kids? If you’re a sports reporter, are you covering adaptive sports and the Paralympics? In Maryland, we have one of the top wheelchair racers in the world. She wanted to practice on the track with her track team in high school, and now, thanks to her advocacy, Maryland has to provide equal access to disabled athletes in public education.
BLOOM: What do you hope to do in the future?
Beth Haller: I do want to write more books. One thing I like to write about is inclusive filmmaking. I learned about Bus Stop Films in Australia when I was there a few months ago. It has a fully inclusive style of filmmaking. The Bus Stop model isn't just about learning to act, but learning how to run the cameras and the mikes as well.
You may want to read the transcript of this 2015 presentation Beth gave as a Fulbright Specialist at the University of Sydney: A Digital Media World Redefined By And For Disabled People: Representations And Access. In writing about how the media often frames technology as 'giving a voice' to disabled kids, I found this interesting:
'Just another couple examples of news stories: “App gives autistic children a voice,” “Modern technology gives Autistic children a voice,” there’s a lot of giving of voices for the iPad and my question is doesn’t a voice reside in the human, not the machine? And so I think the media has it backwards, like I said I’m not taking away from the technology I think it’s very helpful for a lot of people but the way it’s getting reported, it’s the iPad that’s the thing, not the access for people with disability. And the fact that the person with the disability is the one making their statements or giving their perspective of the world through that technology. It’s not the technology that is actually communicating. It’s the person.'
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