By Louise Kinross
In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable. Twenty months later, Connor’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University, is still seeking justice for her son.
BLOOM: Tell me about Connor.
Sara Ryan: He was very quirky and quite eccentric. He had an enormously brilliant sense of humour. He loved transport—buses and coaches. He had a bit of an encyclopedic knowledge of history. He was very good with facts and figures and loved the legal system and the police. But he couldn’t leave the house on his own because he had no road sense and he couldn’t count to ten.
BLOOM: When did he go to the unit called Slade House?
Sara Ryan: He went to secondary school from 11 till he turned 18 and he was a delight really. Then when he turned 18, almost overnight, he got really anxious and very unlike himself. He was difficult to engage with, had lots of dark thoughts, and was in and out of school because he was aggressive. He began bashing his head against the wall and I was worried he was going to hurt himself or someone else. The night we admitted him he wanted to go home and they had to restrain him on the floor with four people face down and section him. In all his life with us, we’d never laid a finger on him.
BLOOM: You had concerns after he went in, specifically about him having seizures there?
Sara Ryan: He was part of a happy family and the minute he went into the unit, because he was 18, they treated him as an adult. We had to phone up to get permission from him to visit, which was very odd. They didn’t engage us at all and changed his medication. I visited and could tell he’d had a seizure because he’d bit his tongue and was very disoriented. They disputed that.
BLOOM: What happened the day of his death?
Sara Ryan: I got a call that he was unconscious and on the way to the hospital in an ambulance. When I got there the consultant said straight away that he was ventilated but there was nothing they could do. They switched off the machine while I was there. Two weeks later the NHS trust published in its board minutes that a ‘service user’ had died of natural causes.
BLOOM: At the time of his death, Connor had been in the unit for 107 days but hadn’t been assessed or treated. What were they doing?
Sara Ryan: He was there for 107 days and the psychiatrist saw him three times. The psychologist filled in some questionnaires, but they didn’t come to anything. They said they were going to do social stories with him, but they never did that. He was a school boy and they should have been taking him to school. But they gave him choices, so he’d say no and stay in his room and watch DVDs.
BLOOM: How did you get an independent investigation into his death?
Sara Ryan: Before he went into the unit I’d been blogging about our family's life with Connor. It was about all the amusing things he did. Lots of people subscribed to it and became very fond of him. When I posted one line on the day he died it went viral. And when we found out the trust was saying he died of natural causes—and was going to do an internal investigation that clearly wasn’t going to find out anything—we made a lot of noise online and eventually they capitulated.
BLOOM: What did the independent investigation find?
Sara Ryan: That it was a preventable death. The staff had the knowledge. They knew he was epileptic and I’d told them he was having seizures in there and was sensitive to medication change. They hadn’t properly assessed his epilepsy and he was left unsupervised in the bath. Twenty months later we’re still waiting for an inquest and the police are still investigating.
BLOOM: I understand the unit was later closed?
Sara Ryan: Nothing happened after Connor died and we contacted the Care Quality Commission. They were about to do an inspection there. They were so shocked by what they saw that they failed the unit on all 10 quality and safety standards and the trust decided to shut the place down. There was no battery in the defibrillator. It was dirty and there was no therapeutic environment.
BLOOM: What accountability do you want from the NHS trust?
Sara Ryan: We want the staff to be disciplined, as appropriate, and a corporate manslaughter charge brought against the trust. We want meaningful involvement at the inquest, which is provisionally set for Oct. 5. We also feel that the commissioners who were commissioning the service—which cost about $1,000 a day—have some role to play. The commissioners spend money on services that you wouldn’t let your dog stay at.
The mortality rates of people with learning disabilities in the UK are shockingly high.* Because the trust said Connor’s death was ‘natural causes’ we were concerned that learning disabled people might die regularly in hospitals and units and their deaths wouldn’t be properly investigated.
Through our campaign we had a meeting with the chief executive officer of NHS England and he agreed to commission a review into deaths since 2011 of people with learning disabilities and mental health issues in the care of the trust.
We want the law changed so that families don’t have to pay for legal representation at the inquest and we believe there should be an independent investigation if someone with a learning disability dies in a hospital or other secure setting.
BLOOM: In a report you produced, you wrote about the lack of humanity in how your family has been treated.
Sara Ryan: I think how they treated Connor was extended to us after he died. They stripped away any sense of him being part of a family and treated him as an object. Once he died they didn’t demonstrate any empathy or compassion or understanding for the pain they caused us and for all kinds of delays and obstructions and deceit really. It’s made what was such a horrific and unimaginably awful situation so much worse. For example, they had the trust’s barrister sit in at a pre-inquest review and try to argue that drowning is a natural cause of death.
BLOOM: What will your legal costs be?
Sara Ryan: Families in the UK don’t get any legal help for inquests and it will cost us almost $50,000. The NHS trust draws on public funds to arm itself with very good legal representation. We were able to raise the money we need through our social media campaign and selling postcards and other fundraising efforts, which is quite remarkable.
BLOOM: In your report you say ‘The ultimate barrier appears to be that learning disabled people are seen as less than human.’
Sara Ryan: Generally, in the way our social life is organized, our kids tend to go to special schools and leisure activities aren’t accessible, so people don’t come into contact that much with people with learning disabilities. The chance of having a job is low, so there isn’t a big community presence. When I started blogging about Connor I made him human in a way that he hadn’t been seen outside of his family and school. Even my colleagues started to chat with me about him. After the weekend they’d say ‘it was hilarious that Connor did this or that.’ They began to see that he was a quirky, funny young man. Ultimately we need to bring the human back so people can appreciate these kids as individuals like anyone else, who just have their own ways of doing and saying things.
BLOOM: You’d like to see more money allocated to community supports?
Sara Ryan: Assessment and treatment units like the one Connor was in have complicated costing arrangements and the money doesn’t tend to follow the person from the unit back to the community. Often the local authority has to find the cost of the support package. You might be able to stay in a place that costs $1,000 a day (indefinitely sometimes, a National Audit Report published last week found the average stay for someone in an assessment and treatment unit is 17 years), but when you come out the local authority hasn’t got the funding because of cuts to welfare costs. In addition, no one seems to know what good care looks like.
*A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care.
Please see a talk Sara Ryan gave at a patient experience conference at the University of Oxford: How to hear voices that are seldom heard
Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."
BLOOM: What does your experience as a parent of a child with disability add to your role here?
Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.
BLOOM: Can you tell us a bit about your daughter?
Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.
Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.
BLOOM: What’s been the greatest challenge parenting Rachel?
Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.
The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.
I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.
I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.
BLOOM: Can you tell us about your background?
Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.
Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.
BLOOM: Why do you believe that social media is important in your role?
Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.
BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?
Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.
A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.
BLOOM: How can the hospital best support parents so they feel able to advocate for their child?
Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.
BLOOM: What would you like our parents to know about your plans for the hospital?
Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.
BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?
Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.
Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.
For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.
By Louise Kinross
‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.
Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome (CCHS). Leo’s dad writes that “He evolved from a 'curse' (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.” The movie is a beautifully honest look at how parents try to make sense of a life-threatening illness in their newborn. BLOOM will run an interview with Leo’s mom Magda in the print magazine coming out at the end of this month. Here’s a sneak peek.
BLOOM: Did making the film help in your healing process?
Magda Hueckel: Yes, definitely. First of all, it was very important while we were shooting. It was a really dark period for us, and sometimes we had no strength at all. Leo was still in the hospital, and after coming back home, all we could do was sit and stare at the wall. Nothing seemed important or worth any effort. But, once we decided to make the movie, we had to mobilize ourselves, take a camera and start shooting. It made us active. We felt that we were doing something creative.
And then—watching the movie helped us accept the trauma that we went through, to cry it out, to finally put it in perspective, and start a new life. It was the best therapy ever.
BLOOM: Did health workers help you feel that you could cope with Leo's medical needs?
Magda Hueckel: Unfortunately, the medical care was not perfect. Of course we have met many great nurses and doctors, who have been really involved, but in the beginning we felt very alone. All the knowledge we have, we had to seek from other families who deal with CCHS or from doctors that we reached out to.
BLOOM: What advice would you give parents of infants who have life-threatening illnesses or complex medical needs?
Magda Hueckel: Never give up. Check out everything. Someone tells you your child won’t walk—keep trying; your child won’t eat—give him a chance. It is worth your effort. And never lose hope—medicine is developing and miracles happen. And try to enjoy your life as it is. Even if you cannot do many things and you have a lot of restrictions—you can choose other activities. There are millions of possibilities. You can be happy, you can enjoy your life, you can push yourself to grow.
BLOOM: How is Leo's health now and what does he enjoy?
Magda Hueckel: He is four years old and he is a great guy. He loves travelling. He is starting to read and speak. He is really a happy boy. All his adventures are described on our blog—an English version is available at LeoBlog.
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By Louise Kinross
This is Katie Hebert with her doll with a stomach feeding tube and brother Nathan. "We heated up a skewer and used it to melt a hole in the doll's stomach and then just placed the tube as usual," says mom Kyla. "The kids thought the 'operation' was so cool."
Katie has suspected mitochondrial disease and her family in Texas has adapted her dolls to be like her. I received Katie's photos, and many from other families, after our story about Melissa Shang and her petition to have American Girl release a doll with a disability. We'll share more pictures in the BLOOM print magazine later this month. And...I am interviewing Melissa and her older sister Eva tomorrow about their campaign to see kids with disabilities represented in dolls and books and media.
Below is a picture of Katie with a monkey with a g-tube made for her by Tubie Friends, a non-profit that adapts toys free of charge so that they have medical equipment or features like their owners. "They do all kinds of modifications, feeding tubes and traches and ports and even heart-surgery scars," Kyla says.
And below that is Katie with an American Girl doll who has a wheelchair, glasses and a sock-monkey hat like her.
By Louise Kinross
Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.
Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.
Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families of children with disabilities.
E-mail Lindsay Mulock at lmulock@varietyvillage.on.ca to learn more. The offer ends Feb. 28!
By Louise Kinross
In January I wrote about Melissa Shang, a girl who at age 10 got 150,000 people to sign a petition asking American Girl to release a doll with a disability. Melissa has a form of muscular dystrophy. The company hasn't.
Then I heard from the Pots family in St. Catharines, outside Toronto. Pictured above are Emily, Sophia, Rachel and Janneke. Rachel and Janneke both use wheelchairs now and have global developmental delay with no diagnosis.
Their mom Sara sent me a photo (below) of an American Girl doll that Emily and Sophie had adapted to reflect their family's experience. They purchased the wheelchair from American Girl. But "the hand splint, g-tube, tinted glasses (for vision clarity) and ankle-foot orthoses were modified by 'Pot Home Health Supplies,'" Sara says, aka Emily and Sophia. "My kids get more satisfaction out of making the pieces.
"From the very beginning Emily and Sophia insisted we save money for Rachel and Janneke to have a doll in a wheelchair," Sara says. "As they began to visit the American Girl stores and website, they were frustrated to see there were little to no props for girls with disability. What I love about that frustration is that it comes from their own hearts. My hope is that they will continue to see places and things that need representation of all, not just in the doll world, but beyond."
Do your kids adapt their dolls in this way? Please send your pics to lkinross@hollandbloorview.ca and we'll share them.
Photo by Elma Regnerus
Looking for an interesting read? Check out the disability and parenting stories we've collected recently.
But first, I'd like to introduce you to Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with Jillian Peters). You can get a unique window into Julia's first few weeks at the hospital on her blog or follow her on Twitter @Hanigsberg. Julia comes to us from Ryerson University, where she was vice-president of administration and finance. She's the parent of a child with a disability. You'll hear more about Julia in an upcoming piece in BLOOM. Welcome Julia! Louise
Homeschooling, and teaching, a child with Down syndrome The New York Times Motherlode blog
BLOOM contributor Kari Wagner-Peck debuts in The New York Times with a piece on what happens when she homeschools her son with Down syndrome. Kari always writes with humour and great insight.
Trapped in a virtual coma but aware, Martin Pistorius breaks free, CBC The Current
Martin Pistorius was a healthy South African 12-year-old until meningitis took his ability to move and speak. Doctors told his parents he was 'a vegetable.' Years later he regained the ability to communicate. This morning he did this interview with his voice device.
Airlines break too many wheelchairs Al Jeezera America
Excellent piece on how common it is for airlines to break wheelchairs and the impact this has on frequent flyers.
How to measure a medical treatment's potential for harm The New York Times
Fewer people benefit from medical therapies than we think. The Number Needed to Treat (NNT) tells you the number of people who would need to receive a therapy in order for one person to benefit. The Number Needed to Harm (NNH)is the flip side. Interesting.
Simple solutions make the difference Scope Charity
How a mom who is three foot six and has brittle bone disease is raising a son she can't pick up with creative adaptations. For example, plywood steps covered in soft foam and fabric allow her to climb from her wheelchair onto the sofa and then from the sofa independently move onto the floor to play with her son.
Parents of disabled children must change their loved ones on public toilet floors Irish Mirror
Parents in a number of countries, including Ireland, talk about how inaccessible bathrooms limit their families. They're calling for designated bathrooms with a ceiling track hoist and a height-adjustable adult changing table.
For special-care residents, New York state policy means leaving home The New York Times
Heartbreaking piece about how challenging the move from an institution to the community will be for a 50-year-old man with severe autism who's lived in an institution for most of his life and finds comfort in its routine.
Making a place for disabled young adults to live, learn The Boston Globe
A mother creates a residence and day program for adults with autism, like her son, and other developmental disabilities. But the price tag is steep: US $125,000 per year.
Legoland bans disabled men from park because of protection policy The Independent
Two British adults with developmental disabilities whose families bought them passes to visit Legoland are barred from attending with their caregivers due to 'safety' of other children. The policy is small-minded.
A new face for Violet The New York Times video
A surgeon uses a plastic 3D printing model of a child's skull to practise cuts prior to conducting a complicated facial surgery.
Parenting expert writes about raising four struggling kids The Toronto Star
Can't wait to see Ann Douglas' new book Parenting Through The Storm about raising four children: one with depression, two with attention deficit and one with Asperger's.
What Facebook means to special-needs families The Huffington Post
For parents who have children with rare diseases or disorders, special equipment, body differences or something that makes them extra unique, Facebook is the most precious invention ever.
An ER doctor sees the health-care system through a patient's eyes Chatelaine
Dr. Brian Goldman writes an eloquent piece about being on the other side of the fence during a discussion about placing a DNR on a family member, his father.
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