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Family Advisory Committee Annual Report 2013–2014


The Family Advisory Committee is there to advise the hospital on decisions that may have implications on families and clients and to ensure that the hospital’s strategy and day-to-day functioning remains faithful to the core value of client and family centred care.� -Tom Chau, Vice President, Research and Director, Bloorview Research Institute

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Table of contents Letter from the President and CEO 4 Letter from the Family Advisory Committee co-chairs 5 About the Family Advisory Committee 7 How we make a difference 8 Recognition 11 What to expect at Family Advisory Committee meetings 12 Who we are 14 Meet the Family Advisory Committee executive 16 Acknowledgements 17 Continuing development 18 What’s next 18 Contact us 18 About Holland Bloorview Kids Rehabilitation Hospital 19

Family Advisory Committee Annual Report 2013–2014 | 3


Letter from Holland Bloorview’s President and CEO I would like to offer my congratulations to the Family Advisory Committee on their first annual report. Over the years, the Family Advisory Committee has played a leadership role in defining how we put client and family centred care into practice and helping to ensure it is firmly embedded in everything we do. I am excited that their outstanding contributions are being shared and celebrated. As I conclude my time as President and CEO at Holland Bloorview in early 2015, I would like to take this opportunity to thank the Family Advisory Committee, and all client and family leaders, for their genuine and sincere partnership over the years. Together we have raised the bar on what it means to provide client and family centred care at our hospital and beyond. Sincerely,

Sheila Jarvis President and CEO

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Letter from the Family Advisory Committee co-chairs The Family Advisory Committee (FAC) helps ensure client and family centred care is at the heart of everything that Holland Bloorview Kids Rehabilitation Hospital does. The advisory committee is made up of Holland Bloorview families, who share our expertise and provide guidance on all major hospital projects and initiatives. The Family Advisory Committee is pleased to present our first annual report highlighting our achievements and accomplishments over the past year. Sincerely,

Jean Hammond Co-chair

Cheryl Peters Co-chair

Shoshana Hahn-Goldberg Co-chair

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Our family leaders have great ideas and the input they provide is highly insightful,” says Laura Williams, Director of Client and Family Integrated Care. “They really challenge our thinking and I am so proud of how we have enhanced care based on the partnerships formed with clients and families.”

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About the Family Advisory Committee Client and family centred care is a core value at Holland Bloorview Kids Rehabilitation Hospital. The Family Advisory Committee provides guidance and feedback on all major hospital initiatives and projects to help the organization deliver the best family-centred care possible. The Family Advisory Committee also sets yearly committee goals that help advance client and family centred care within the organization and the wider health-care community. The Family Advisory Committee, along with the research-specific Family Engagement Committee, is part of Holland Bloorview’s Family Leadership Program, which currently has 130 volunteers who participate in various roles within the hospital and the Bloorview Research Institute. Members of the Family Leadership Program sit on hospital committees, provide input into research projects, offer peer-to-peer mentorship, teach at new staff orientation and educate nationally and internationally at conferences and workshops. The Children’s Advisory Council and the Youth Advisory Council also help shape services and research at the hospital.

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How we make a difference This year saw a number of firsts for the Family Advisory Committee of which we are particularly proud. • We assisted in the development of simulation training exercises by sharing our stories and personal experiences within the healthcare system. These simulation scenarios are currently being used to train all new staff and students at Holland Bloorview about client and family centred care. This program is also being made available to existing Holland Bloorview staff.

• We conducted our first joint meeting with The Hospital for Sick Children (SickKids) via video conference with plans to collaborate again with them in the future.

8 | Family Advisory Committee Annual Report 2013–2014

• We hosted our first Family Leadership Program volunteer appreciation event with networking activities, door prizes and a fun photo booth where families were able to share why they volunteer.


• We developed a recognition award given to staff members when a client or family recognizes them for displaying the key behaviours of client and family centred care. The new award is a pin that staff can wear proudly on their lanyards or display in their areas for all to see.

• Family Advisory Committee members frequently speak at Holland Bloorview events and share their stories. before

• We increased the awareness of the Family Advisory Committee and client and family centred care by assisting in the development of the hospital’s new website and sharing our story with staff on the hospital’s intranet.

after • We helped to redesign the family lounge on the inpatient floor. This space is a calm oasis, with a comfortable homey feel where families of inpatients can relax and feel like they are not in a hospital.

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$12,000 • Family Advisory Committee members assisted with a staff appreciation event.

• In 2013-2014, the Family Advisory Fundraising Committee raised over $12,000 for the committee’s initiatives that support inpatient clients and their families, including coffee and movie nights, welcome kits, a Holiday lunch and free coffee and tea in the family lounge.

• We created a ribbon that attaches to the lanyards of family mentors so that clients and families can better identify them in the hospital.

There is an understanding that all the parties, whether it be staff or leadership or family members, have a wealth of knowledge and experience. That experience and that knowledge is valued and is woven into the decision-making process that is a shared one here at Holland Bloorview.” -Tali Golombek, Family Leader, Holland Bloorview

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Recognition In spring 2014, Family Advisory Committee member and past chair Heather Evans (centre), Director of Client and Family Integrated Care Laura Williams (right) and past Holland Bloorview staff member Lily Yang (left) received a Circle of Honour award for leading the development of the Family Leadership Program, which includes the Family Advisory Committee. The Circle of Honour is Holland Bloorview’s highest honour, recognizing those who have made a significant impact to the field of childhood disability. After Family Advisory Committee members presented at the Health Quality Transformation Conference, the conference’s organizers, Health Quality Ontario, featured the hospital’s Family Leadership Program in its newsletter.

The Family Leadership Program was also highlighted by the Canadian Patient Safety Institute.

In 2013, Holland Bloorview’s Family Leadership Program was recognized as a leading health care practice by Accreditation Canada, which surveys and accredits health-care organizations to promote excellence in providing safe and quality care. Hospital News and Today’s Kids in Motion also featured the Family Leadership Program in their publications.

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What to expect at Family Advisory Committee meetings Committee meetings are an opportunity to learn about and provide input into hospital initiatives and develop our own goals.

Typically, the last Thursday of every month, the conference centre is buzzing with activity. We begin around 6:30 p.m. for informal conversation and dinner supplied by the Family Advisory Committee. The co-chairs try to remain on time since most Family Advisory Committee agendas are packed and we begin our meeting promptly at 7:00 p.m. Meeting agendas and minutes are available on www.hollandbloorview.ca (search Family Advisory Committee).

The meetings begin with brief roundtable introductions where members state their name, how long they have been on the committee and share a little of why they are a part of the Family Advisory Committee.

Almost every month, a researcher/ scientist from the Bloorview Research Institute presents their ongoing or completed research related to childhood disability. These presentations generally receive a lot of questions and comments from the members of the Family Advisory Committee.

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There are many different people that regularly attend the meetings: family members, members of the Client and Family Integrated Care team, senior management, researchers/scientists with the Bloorview Research Institute, members of the Board of Trustees and other Holland Bloorview staff seeking Family Advisory Committee guidance and feedback.


We advise or consult on different programs and initiatives taking place in various areas of the hospital. For example: the electronic health record implementation, referral system and the Tell Us What You Think! client and family survey.

At each Family Advisory Committee meeting, representatives from the Senior Management Team and the Youth Advisory Council provide updates about their activities and initiatives. Beginning in 2013–2014, we also reserved time at the end of many meetings to work on Family Advisory Committee-related goals.

The Family Advisory Committee enjoys being a key stakeholder within Holland Bloorview and appreciates having our voices heard and our opinions counted.

Holland Bloorview truly understands the perspective that families offer and when something is brought to the table, it is very consultative and you know that they are looking for feedback,” says Heather Evans, Family Advisory Committee member and past chair.  “Families really want to be a part of it when they feel that they are being heard. Members of the Board of Trustees and the CEO attend our Family Advisory Committee meetings and appreciate the feedback they receive from families.”

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Who we are In 2013–2014, the Family Advisory Committee had 40 members (32 family leaders, six Senior Management Team members, two Board of Trustees representatives). The family leader members have had a wide range of experiences within Holland Bloorview and have accessed almost all of the programs and services that Holland Bloorview offers.

About

and

per cent

90 per cent

of family leader members are or have been inpatient families.

of family leader members are or have been outpatient families.

40

We need to hear from those clients and families about what it is that they want, and what’s going to be meaningful for them.” -Sarah Keenan, Life Skills Coach, Holland Bloorview

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Family Advisory Committee members and their children access a broad range of programs and services at Holland Bloorview and bring their knowledge and experiences to the table when providing input on improvement projects and initiatives.

The top 10 most accessed programs or services by Family Advisory Committee members Chart Title  

Percentage of Family Advisory Committee members who access each program or service

80

70

60

50

40

30

20

10

0

Clinical Sea3ng   Communica3on   Dental  Services   Clinical Communication Dental Services   and  Wri3ng  Aids   Service   Seating and Writing Services

Services

Aids Service

Clinical Sea3ng  Services   Dental  Services  

Ortho3cs

Orthotics

Grocery Integrated   Ronald  McDonald   Spiral  Garden   Grocery Integrated Ronald Spiral Garden Founda3on   Educa3on   Playroom   (integrated   Resource   Centre   Therapy   (offered   McDonald outdoor   art   Foundation Education (integrated (support   a nd   with   t he   program)   Resource and Therapy outdoor art Playroom informa3on   Bloorview  School   Centre (offered program) centre  for   Authority)   families)   (support and with the

information centre for families)

Swimming

Swimming programs programs

Therapeu3c Therapeutic Recrea3on   and   Life  Skills   Recreation

and Life Skills

Bloorview and Wri3ng  Aids  Service   Communica3on   School Authority)

Ortho3cs

Grocery Founda3on  Resource  Centre  (support  and  informa3on  centre  for  families)   Integrated  Educa3on  Therapy  (offered  with  the  Bloorview  School  Authority)   Ronald  McDonald  Playroom  

Spiral Garden  (integrated  outdoor  art  program)  

Swimming programs  

Therapeu3c Recrea3on  and  Life  Skills  

Information in graphs on pages 14 and 15 based on an informal survey of Family Advisory Committee members.

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Meet the Family Advisory Committee executive The Family Advisory Committee is led by an executive of 2-3 co-chairs, a vice-chair, a secretary and is advised by the past chair. All positions are filled by family leaders and are elected for a period of at least one year.

Jean Hammond is co-chair and has been a member for four years. She is also co-chair of the Family Advisory Fundraising Committee and sits on the Professional Advisory Committee. Jean has a nine-year-old daughter who receives services at Holland Bloorview and is a graduate of the Integrated Education and Therapy (IET) program at the Bloorview School Authority. Jean also has a 12-year-old son. Cheryl Peters is co-chair and has been a member and volunteer with the Family Leadership Program for almost four years. She is very passionate in bringing the family voice to the table at Holland Bloorview. Cheryl has two daughters, a seven and a half-yearold and a six-year-old, who receives services and is a student in the Integrated Education and Therapy (IET) program at the Bloorview School Authority.  Shoshana Hahn-Goldberg is the new co-chair and has been a member for four years. Shoshana also sits on the Research, Teaching and Learning Committee and the Patient Portal Steering Committee. Shoshana has a nine-year-old daughter who receives services at Holland Bloorview and is a graduate of the Integrated Education and Therapy (IET) program at the Bloorview School Authority, and a six-year-old son. 

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Andrea Davila is the new vice-chair, elected in May 2014. Andrea has been a member for three years. Her eight-year-old twin boys are both clients of the hospital and one graduated from the Integrated Education and Therapy (IET) program at the Bloorview School Authority in 2013. Christina Char is secretary and has been a member since January 2014. Her daughter Krystal has been an inpatient at Holland Bloorview for the past 12 years. The Char family is very involved with Krystal’s care and is grateful for the care and services provided by Holland Bloorview. The Char family leads ongoing fundraising campaigns, which fund initiatives like inpatient welcome kits, that have raised well over $20,000 to date.

Acknowledgements The Family Advisory Committee executive would like to recognize and thank all of the advisory members for sharing their experiences and dedicating their time and efforts to help ensure client and family voices are woven into the fabric of Holland Bloorview Kids Rehabilitation Hospital. We would also like to thank the hospital’s President and CEO Sheila Jarvis, members of the Senior Management Team and Board of Trustees, and the scientists and project leaders who attend our meetings and collaborate with us to continually advance client and family centred care. We also would like to extend a special thank you to the staff members who directly support the committee and our work: Laura Williams, Director of Client and Family Integrated Care and Amir Karmali, Family Centred Care Specialist. With Laura and Amir’s partnership, guidance and encouragement, we are able to reach our ambitious goals.

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Continuing development All Family Leadership Program members, including those who sit on the Family Advisory Committee, are provided with training opportunities to grow their skills. This includes workshops on facilitation, working effectively on committees, public speaking and communication styles, and the Institute for Healthcare Improvement Open School courses. Additionally, the Family Advisory Committee executive attends the Institute for Patient and Family Centered Care’s annual workshop series.

What’s next Each year the Family Advisory Committee sets goals based on advancing the core principles of client and family centred care within Holland Bloorview and the community. Our two main goals for 2014/2015 are: • Design and develop an educational workshop for schools

on integrating children with disabilities • Plan and execute a client and family centred care day

Contact us If you would like more information, have feedback, or would like to attend a Family Advisory Committee meeting, please contact facchair@hollandbloorview.ca.

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About Holland Bloorview Kids Rehabilitation Hospital Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) is Canada’s largest children’s rehabilitation hospital focused on improving the lives of kids with disabilities. We are a global leader in applied research, teaching and learning, and client and family centred care. Our vision is to create a world of possibility for kids with disability. We are dedicated to knowledge generation and sharing innovative treatments, therapies, and technologies that give children with disabilities the tools to participate fully in life. Located onsite, the Bloorview Research Institute conducts transformational research in pediatric rehabilitation. Holland Bloorview is an internationally recognized teaching hospital fully affiliated with the University of Toronto. Our Teaching and Learning Institute embraces best practice models to train and develop the next generation of experts in childhood disability. We are a provincial resource transforming care for children with cerebral palsy, acquired brain injury including concussion, muscular dystrophy, amputation, epilepsy, spina bifida, arthritis, cleft-lip and palate, autism and other physical and developmental disabilities.

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Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8 Tel: 416-425-6220 Toll-Free: 800-363-2440 Fax: 416-425-6591 E-mail: info@hollandbloorview.ca

A teaching hospital fully affiliated with the University of Toronto

www.hollandbloorview.ca

Family Advisory Committee - Annual Report 2013-2014  

Holland Bloorview's Family Advisory Committee - Annual Report 2013-2014

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