CEO blog: Celebration of life

Holland Bloorview families and staff came together for special celebration of life in the hospital’s Spiral Garden this summer to remember children who have died. Social worker Barbara Germon helped families plan the event. Barbara, who has been at the hospital for 32 years and currently works in our child development program, shares some of her thoughts about the celebration and coming to terms with grief.

On December 7, Holland Bloorview is hosting a workshop titled “Coping with the Loss of your Child at Different Stages.” Information about this event is available on the hospital’s website. The next celebration of life event at Holland Bloorview is June 9, 2018.

 

Can you describe what it was like to be at the celebration of life event?

The entire event was very positive and uplifting. You could see it was emotional for many who attended, but also a healing experience. The sun was shining and there was a lovely breeze. There was a staff musician playing guitar. We called the names of all of the children and then followed the parents to dedicate a ceramic butterfly to all children past and present. The butterfly was designed by an artist who works at the hospital. It was a very beautiful and moving experience. Several children, including brothers and sisters, and grandparents and other relatives participated.

 

What was your role in the event?

I led the committee which is made up of three parents and three staff. I wanted to make sure the day evolved and the outcome was what the committee envisioned it to be. I also had the honor of reading the names of all the children and reconnecting with the families.

20170611_143211_brightened
 Social worker Barbara Germon speaks at the celebration of life event this past summer.

Can you talk about the process of partnering with families and planning the event?

The experience of working on the committee with the parents was very inspiring for me. I really enjoyed listening to the parents and learning about what would be most meaningful for them in creating this day.

20170611_155822 (3)
Family leader Bruno Geremia (second from right) helped lead the celebration of life event and attended with members of his family and Holland Bloorview staff. Read more about Bruno in the hospital’s BLOOM blog.

I know the event is important for families – can you talk about the significance of the event for staff members?

It offered staff who attended a way to reconnect with parents and honor the children they grew to know and love.  There are some families staff hadn’t seen since the child passed away. It is a loss for professionals when a child dies. A memorial celebration is part of their grief process and how they come to terms with it.

 

As a social worker, what have you learned over the years about supporting families during end of life care and the grieving process?

Families of children with special needs feel a great sense of support from other families. They also feel staff who knew their child understand their journey. Some families may feel friends and family are unable to fully relate to their situation or know how to offer support, especially if the child was medically fragile. As a result, when a child dies, parents may feel more isolated. This is termed a type of “disenfranchised loss.”  That is why it is so important that we take extra care to support families of children with special needs and help them stay connected to others who have walked a similar path.

I learned that grief is not linear and there is no set path. People move in and out of grief in their own unique way. It’s also important to particularly recognize fathers, as their grief can sometimes go unnoticed. Grief can take time and work and can catch people when they least expect it. It is very essential to support siblings as well. It is helpful for each family member to find a way to remember and honor their loved one and find meaning as they move forward.

 

What thoughts would you share with other clinicians if they are supporting families through this part of their journey?

It is not easy for us to talk about death. I think the more we are able to bring issues out in the open, the more comfortable we will be in our efforts to support families. When we talk about it we can feel more able to support each other and the families we work with.

 

Being a health-care provider can be emotionally challenging, how do you take care of your own mental health and wellbeing?

I believe strongly in the value of reflective practice. We need to acknowledge our own humanity so that we can support others in their journey. Self-care is a key ingredient to this process. I have to reflect on my feelings all of the time. When I feel I am overwhelmed, I gain strength from friends and family and take time for myself to refuel. It is important that we take time if we are going to support others.

 

How has Holland Bloorview’s approach to supporting families during end of life care and the grieving process changed over the years?

I think end of life care and grieving is starting to be discussed more. We are acknowledging this as a part of our work here. Some of our clients have complex needs. I am part of a Centres for Leadership group that is also looking at advanced care planning and starting these conversations with families before their child may become ill. We are starting to create a holistic approach to care and this means that sensitive issues can be discussed at every part of the journey.

 

What more can Holland Bloorview do to support families during end of life care and the grieving process?

We are hoping to provide more education to families and staff. We are also looking at different models of group support. Through advanced care planning we can open conversations earlier and begin to support families at all stages of the lifecycle. We want to everyone to feel more comfortable talking about grief. We hope families will feel that support is available if their child passes away.

 

What’s next for the celebration of life event?

We are hoping to have an annual event each June and we already have a date picked out for 2018. We are also planning an evening for families in December where we will be inviting a speaker to present on one of the many aspects of the grief journey. We have also talked about a coffee group to provide further support to families. The committee is discussing how we can provide more opportunities for siblings too.

_____

Julia
@Hanigsberg

CEO Blog: Accreditation 2017!

Accreditation blog
Inpatient care providers with a banner outlining some of our accreditation milestones to date

With less than two weeks to go until Holland Bloorview’s accreditation survey I couldn’t imagine a better topic to post a blog on for October.

What is accreditation?

Accreditation is a voluntary review process, including an onsite survey by health-care experts from Accreditation Canada. Accreditation is an opportunity for us to demonstrate how we provide excellent care by aligning quality and safety improvement initiatives with national standards and best practices. The survey team will be with us from Monday, October 16 to Thursday, October 19, 2017. Most importantly, accreditation is an opportunity to showcase our quality and safety excellence.

Accreditation Canada develops standards and required organizational practices. We see these as an opportunity to prioritize improvement initiatives across Holland Bloorview. We’ve been fortunate to have amazing leadership from staff and family leaders across six accreditation teams: Governance, Leadership, Medication Management, Infection Prevention and Control, Ambulatory Care, and Rehabilitation.

In addition, all of our family leaders involved in accreditation have come together in the Family Leader Accreditation Group which is the most visible symbol of the commitment we made in the No Boundaries strategic plan to evolve client-centred quality and safety. In the plan we say, “We will strive for the highest quality care and safety in everything we do – our quality and safety measures will reflect what children, youth and families truly value.”

What happens during the survey October 16-19, 2017?

The accreditation surveyors will meet with teams related to each of the standards all of which include family leaders. They’ll also meet with community and service partners, meet with a group of family leaders, conduct tracers and walk through our halls taking the opportunity to observe Holland Bloorview in action and to ask questions of any staff they encounter. This is such a great opportunity for all of us to voice our knowledge of and pride in the quality and safety practices at Holland Bloorview. For Holland Bloorview staff, there are great tips and tricks to help you feel ready for the survey week on our intranet site (viewfinder).

Why am I so confident?

Sometimes the count down to the accreditation survey can feel a bit nerve-wracking. Perhaps you’re thinking it sounds like cramming for a 4-day final exam! This isn’t how I view accreditation. Think instead about accreditation as one of the key ways we live our value, excellence (one of our 5 values along with courage and resilience; compassion; equity; and innovation) and how we connect what we do each and every day at Holland Bloorview to our new vision: The most meaningful and healthy futures for all children, youth and families. Accreditation is part of our commitment to continuous learning and continuous improvement. The survey isn’t about finding failure, it’s about sharing how we all contribute to a strong safety culture and doing it in a way that keeps children, youth and families at the heart of everything we do.

We’ve got this!

_____

Julia
@Hanigsberg

CEO Blog: It’s time to end the cycle of disability stigma

Imagine your wonderful child coming home every day from school and telling you she ate lunch alone because no one would sit with her. Why? Because she uses a wheelchair.

Imagine facing stares and whispering when going to the grocery store with your child or the clerk that doesn’t even try to understand your child’s speech and instead ignores them and talks to you.

For kids and youth with disabilities and their families, these are every day realities. Kids with disabilities want to be loved, appreciated, move, laugh, learn and play just like all kids do. But too often they’re hindered…not, as you might think, by their disability but by the actions, attitudes and beliefs of others, including their teachers, classmates, neighbours, even by their communities.

As a result, kids and youth with disabilities face far too many frustrating, heartbreaking and spirit-killing barriers – barriers caused by stigma.

They routinely face stares, whispers, name-calling, social exclusion, bullying and outright prejudice and discrimination.

It’s time to end the cycle of disability stigma and break down barriers and bias that hold kids and youth with disabilities back.

The urgency to shift thinking and attitudes becomes clear when you look at some alarming stats around disability:

  • 53 per cent of kids with a disability have zero or only one close friend.
  • Kids with disabilities are two to three times more likely to be bullied.
  • 25 per cent of kids with disabilities under 15 in Canada have unmet educational needs.

And the implications for the adults these kids will become are stark as well:

  • Only 49 per cent of Canadians with disabilities aged 25 to 64 are employed compared to 79 per cent for Canadians without a disability.
  • One-third of people with disabilities say they have been denied a job because of their disability.
  • Only 59% of Canadian youth with disabilities aged 18-21 attend post-secondary education compared to 72% of youth without a disability.

And we’re not talking about a small group. In Canada, there are 400,000 children and youth with disabilities. That’s the population of Halifax.

But go beyond stats and understand the pain, frustration and humiliation stigma causes.

Getting around in a wheelchair isn’t easy, but eating lunch alone at school every day really stings.

Putting on a prosthetic limb can be cumbersome, but hearing whispers or blatant name calling in the hallways or on the playground can be agony.

So too can never being invited to any birthday parties. Or not getting what you need to do your schoolwork, or being passed over for jobs that you know you could do with a few simple and inexpensive accommodations.

The time is now to make a change. We can’t do that unless we face up to our own bias, learn more and break the silence. Being anxious about offending or upsetting is not a good excuse to do nothing.

To get the conversation started, Holland Bloorview has launched a national public awareness movement called ‘Dear Everybody’ that’s focused on challenging and breaking down disability stigma and stereotypes.

Driving this movement are the words of kids and youth with disabilities, sharing their stories, their experiences and what they need the public to know to tackle the myths and misconceptions that exist about living with a disability.

Who better to raise issues people are too afraid to ask and put that information into the world, than those who experience the stigma every day?

Their messages are short and direct, such as:

“If someone’s voice is hard for you to understand, talk to them more. You will get better at it.”

“Not everyone in a wheelchair needs to be fixed.”

“If you’re inspired by someone with a disability, make sure they did something inspiring.”

For the kids having their experiences heard is empowering. For the public it’s enlightening.

To keep the conversations going, DearEverybody.ca is a terrific source of information and resources, including stories of lived experiences, recommendations for teachers, employers, health-care providers and others that can be shared, start conversations and break down stigma.

DearEverybody.ca covers major issues such as employment, bullying, friendship, education and health care.

It also provides tools to educate the public about the role they play in building an inclusive and equitable society that includes young people with disabilities.

Health care professionals, government departments and other groups can research, discuss and analyze stigma, but it’s the kids who are experiencing it each day who can deliver the most powerful message for bringing about change.

There is no time to wait for a world that fully embraces disability as a valued form of diversity. Every one of us needs to be a catalyst for change, and the place to start is by amplifying the words of kids and youth with disabilities themselves.

Go to DearEverybody.ca. Share the letter broadly. Do something today that makes your piece of the world more inclusive. Tell someone about the resources online. We call this “Dear Everybody” because everybody needs to act. And that means you.

_____

Julia
@Hanigsberg

CEO blog: Advancing health equity – because it’s 2017

Last week, Holland Bloorview Kids Rehabilitation Hospital VP of Programs and Services, Diane Savage, and I were fortunate to be able to speak at the annual Pediatric Health Equity Collaborative conference, which was hosted by Holland Bloorview.

The Pediatric Health Equity Collaborative is an outgrowth of the Disparities Leadership Program at the Disparities Solutions Center at Massachusetts General Hospital. Five Holland Bloorview leaders attended the program in 2014 and 2015 to advance our work of equity, diversity and inclusion. The Collaborative works to establish best practices, lessons learned and recommendations with regard to race, ethnicity, language and other demographic data collection in pediatric care settings.

Among the organizations participating in the conference were: Disparities Solutions Center at Massachusetts General Hospital; Boston Children’s Hospital; Children’s Mercy Hospitals and Clinics; Holland Bloorview Kids Rehabilitation Hospital; Johns Hopkins Medicine; Monroe Carell Jr. Children’s Hospital at Vanderbilt; Sinai Health System (Toronto); Nationwide Children’s Hospital (Columbus, Ohio); Nemours Children’s Health System (Wilmington, Delaware); Seattle Children’s Hospital; The Hospital for Sick Children (SickKids) (Toronto); and St. Christopher’s Hospital for Children (Philadelphia, Pennsylvania).

At Holland Bloorview we are proud of our commitment to equity, diversity and inclusion. Over the last five years we have embedded structures such as our Equity, Diversity and Inclusion Steering Committee, our grass roots Equity, Diversity and Inclusion (EDI) Council and we have seen the evolution of our employee social committee which has taken leadership in hosting different celebrations of diversity in partnership with the EDI Council.

Pride_Photo_V_2
Holland Bloorview kicked off Pride month by re-creating the Pride flag to celebrate the full diversity and inclusion of people with diverse sexual orientations, gender identities and gender expressions within our hospital and the community.

Some of our key successes include:

  • an organizational equity survey of staff, the results of which help us prioritize and plan
  • our respect campaign to raise awareness and promote mutual understanding
  • an equity lens toolkit to bring EDI to the design of new services and organizational structures
  • health equity client and family surveys to understand who we serve and how care is experienced

And, as is always the case at Holland Bloorview, we have co-created these approaches with our child, youth and family leaders and our Client and Family Integrated Care team.

We know our communities at Holland Bloorview are diverse culturally, economically and geographically. Nearly 50% of the population of Toronto immigrated to Canada and nearly 50% are visible minorities. Toronto is also home to some of Canada’s largest urban indigenous communities. It is imperative we better understand the communities we serve or we will not be able to deliver the kind of care that creates the most meaningful and healthy futures for our children and youth, and the adults they will become.

As part of modeling the change we want to see in the health care, we also have to do better at reflecting the diversity of the people we serve with our own organization. Being reflective of those we serve can help advance better health outcomes, effective models of service delivery, efficiency, heightened care experiences and a just culture of acceptance where staff, clients and families feel safe bringing their whole selves to their place of care and work.

Data from our own health equity survey tells us that nearly 30% of families we serve earn less than $60,000 per year and nearly 16% earn less than $30,000. This is in a city that has the highest cost of living in the country with some of the most expensive housing costs in North America. With this knowledge, we are currently exploring how financial barriers impact how often families miss appointments. It is only through this work that we can identify effective solutions to ensure our clients and families are getting the care they need.

We have to do better for the children and youth we serve, regardless of their backgrounds. We have to create health, social and educational systems that work for everyone and we need to partner in ways that are innovative, fiscally responsible and gives us opportunities to learn and share what we know.

It’s 2017 and it is simply no longer acceptable for the social determinates of health to determine child and youth health outcomes.

_____

Julia
@Hanigsberg

CEO Blog: Correcting a mistake

Back in 2016 I wrote a post called “Why Equity, Diversity and Inclusion is So Important … Especially Today” following a tragic shooting in a gay nightclub in Orlando, Florida in which I made the following statement, which I also referenced in a January 2017 blog:

“I don’t know who first shared with me the idea that we all carry around our individual (metaphorical) backpack. It might have been Holland Bloorview’s Louise Kinross or something I read in her wonderful BLOOM Blog or maybe I picked it up somewhere else. In our backpack we carry with us our experiences, our perspectives, our life choices, our culture and tradition, even whether getting the kids off to school this morning was smooth or WWIII! And as it is an invisible backpack, we can’t ever know what’s in the one that another person carries. But we know they carry it, and it affects who they are, what they say, how they react.”

Just today I ran into what I think the source is for the idea of the “invisible knapsack” – feminist and anti-racism scholar Dr. Peggy McIntosh. In her analysis, included in “White Privilege: Unpacking the Invisible Knapsack,” she introduces the dimension of privilege into discussions of power, gender, race, class and sexuality. In the piece, Dr. McIntosh encourages individuals to reflect on and recognize their own unearned advantages and disadvantages as parts of systems of power: “In unpacking this invisible knapsack of white privilege, I have listed conditions of daily experience that I once took for granted.”

When I used the idea of the “invisible knapsack” I wasn’t using it in Dr. McIntosh’s sense of a way to examine one’s own privilege, but instead in the sense of a means of insight into other people’s lives and experiences.

_____

Julia
@Hanigsberg

CEO Blog: When is Accreditation Not about Accreditation?

HBH-UX-Desktop-Wireframes-v1.2

What do Accreditation, developing a Quality Improvement Plan and strategic planning have in common? The quick answer at Holland Bloorview is engagement. The longer answer lies in a cliché – that the journey is as important as the destination.

In each of these important pieces of work, I’ve been impressed by how much meaning is being made of what can sometimes be “rote” exercises. Instead I’ve been witness to a strength-based approach that has helped us focus on what our “always” events need to be. And in each instance, the crucial ingredient has been engagement – the depth of knowledge, wisdom, creativity, and thoughtfulness demonstrated by our team, partner organizations in the community, parents, youth, and children we serve.

As important as any individual measure is on a Quality Improvement Plan, equally important is what it represents in terms of a stated organizational aspiration to address something meaningful. Data that goes to meaning can be hard to measure. It is relatively easy to measure the number of days wait for a certain procedure or appointment. What is the story that such a measure tells? How often do hospitals measure something because we can rather than because that measure accurately represents the aspiration to make a meaningful change?

This year there is a shift on the Holland Bloorview Quality Improvement Plan from measuring a process around follow up phone calls after inpatients are discharged to measuring child and family readiness for discharge. This is critical strategically for Holland Bloorview and for the system as we collectively prioritize transitions along the continuum of care, care close to home even for our most medically complex children and youth, and local accountability (see the government’s Patients First strategy and the Toronto Central Local Health Integration Network’s strategic plan). The measure will give our teams great insight into success and where we can make families even more ready for an important, highly anticipated, but also sometimes high-risk point in their rehabilitation journey.

Ultimately enabled by the leadership of our Board of Trustees, staff, children, youth, and caregivers hold the secret to understanding what quality and safety mean. That’s why animating our Quality Improvement Plan development with the knowledge of our Children and Youth Advisory Committees has been impactful. And it is why a trustee at a recent hospital event commented on the enthusiasm and engagement of our staff about Accreditation, a voluntary review process of our quality and safety practices by healthcare experts. Staff were truly interested in learning about the process and how they will each drive continuous improvement and excellence. I was a skeptic when told we were going to have two family leaders on each Accreditation committee for a two year period, but there was no shortage of interested family members and we’ve learned together through the process. Two of our family members were even recognized by the Canadian Patient Safety Institute for their leadership in advancing quality care through the Accreditation process.

To learn more about how we are thinking about strategy, Accreditation and Quality Improvement, check out our latest strategic plan blog post, Accreditation video and the overviews we have created for families and for children.

When is Accreditation not about Accreditation? When it is about engaging team, children, youth and families around charting a course toward the most healthy and meaningful futures for all children and youth.

_____

Julia
@Hanigsberg

CEO blog: Why am I so in love with Capes for Kids?

 

Kathleen Wynne Capes
(Left to right) Emily; Premier Kathleen Wynne, MPP (Don Valley West); Liam; me and Imaani. Together we showed our support for Capes for Kids during the Premier’s visit to the hospital last month.

Almost three years ago when I interviewed for the job of President and CEO of Holland Bloorview, I told the search committee that I didn’t want Holland Bloorview to be the best children’s hospital hardly anyone has heard of any more. It’s a phrase I’ve used a lot since, especially with the great Joint Communications Team that the Hospital and Foundation share and with my great partner-in-crime Sandra Hawken, President and CEO of the Holland Bloorview Foundation.

This year, Holland Bloorview launched Capes for Kids. From March 6-12 all sorts of people (and more than a few pets!) will be wearing capes to spread awareness of and raise funds for childhood disability. Participants will also be talking about the great work that Holland Bloorview does providing exceptional care, taking on groundbreaking research and discovery, and training the clinicians of tomorrow all in partnership with the world’s experts – the children and their families.

What is so exciting is how people have embraced the Capes for Kids concept. Because it was co-designed with families of Holland Bloorview clients, we were confident kids and parents would love it, but we’ve been wowed by how it has spread. More than 86 teams registered, more than $230,000 raised and counting, and over 1000 brand new donors, many of whom now know more about the needs of kids with disabilities than they did before! And more important than anything else is how meaningful participants are finding it. Check out this video to see what I mean.

I’ll be proud to be wearing my cape from March 6-12 as will so many of the Holland Bloorview team, kids, families, friends and supporters. And we’ll all be taking the opportunity to talk about the 7400 amazing kids we serve each year and kids like them around the province, country, and the globe. Together we can make sure they will have the healthiest and most meaningful futures and live in a world of possibilities!

 

_____

Julia
@Hanigsberg