Family Advisory Committee (FAC) – Holland Bloorview’s parental guidance

The Family Advisory Committee (FAC) is the eyes, ears and voice of families at Holland Bloorview.

Funded by donors, the FAC is made up of a devoted group of parents and former clients that represent all children and families who come through Holland Bloorview’s doors.

It works with staff to promote family-centered care; helps plan, evaluate and improve services and programs; and helps families become better advocates.

The FAC’s stamp is all over the hospital.

The FAC partnered on the new connect2care portal to help families manage their health information and appointments.

More than 500 new inpatient families receive a welcome package every year, thanks to the FAC. And in an effort to make school more inclusive, Family Leader voices are now being heard beyond the hospital’s walls through an educational workshop developed and delivered by FAC members.

Holland Bloorview Foundation spoke with the FAC’s Vice Chair and Co-chairs on why they joined the FAC, and why it’s such an important part of Holland Bloorview’s model of care.

Alifa Khan, FAC Vice Chair

Holland Bloorview connection: Her eight-year-old son, who has autism and ADHD, has been coming to Holland Bloorview since 2012.

Reason for joining FAC: “This is the first building that I have ever come into with my son and he didn’t want to run away. Here there is no judgement, no fear, there’s just so much acceptance. I wanted to be more involved with that. I wanted to really understand what goes on here that makes it so special.”

Why the FAC is important to me: “The caregiver and the child become one at some point – one in the sense that the caregiver is going to provide care for the child when you’re not at Holland Bloorview. At the same time, you want to have that dialogue where the clinician is embracing you as the expert on your child, but not the medical expert.”

FAC impact: “This committee has elevated the family voice so that patient and family centered care have become embedded within the organization – it’s become our norm.”

Joshua Engel-Yan, FAC Co-chair

Holland Bloorview connection: His six-year-old daughter, Gavriella, was born with a neuromuscular condition and has been coming to Holland Bloorview for the past four years.

Reason for joining FAC: “In Gavi’s early years, she had a lot of hospitalization. In 2013, she caught influenza and ended up in an ICU for four months. It was the worst time of my life. The medical care in that ICU was good, but not set up for family engagement.”

“Coming out of that experience, we were traumatized, but I was looking to make something positive out of a difficult time. When I saw that Holland Bloorview wanted to engage families, it sounded like a great way to get involved and use my experience to contribute to better family-centred care.”

Why the FAC is important to me: “The client is the child, but really the client is the family. To be able to provide service, you need everyone’s perspective…In the FAC we give a lot but we also get a lot. We learn a lot working with the staff at Bloorview and with the other parents, it’s a two-way street.”

FAC Impact: “The CEO is at practically every FAC meeting. Board members come to each meeting and lots of other senior staff come on a regular basis. It’s clear they value the FAC at a senior level.”

Shoshana Hahn Goldberg, FAC Co-chair

Holland Bloorview connection: Her 11-year old daughter who has cerebral palsy has been coming to Holland Bloorview since she was two.

Reason for joining: “With a child with a disability you’re going to be coming here a lot and you’re going to be involved with this organization and the health care system for a long time, so you have a lot of valuable experience to share.”

Why is FAC important to me: “There are usually small things from the families’ perspective…it’s the little things that make a difference that staff wouldn’t necessarily think of.”

FAC impact: “Being partners with the staff and the management here, you feel like you’re working alongside them, not apart from them.”

If you would like to learn more about the Family Advisory Committee, phone: 416-425-6220 ext. 6420 or email at familypartner@hollandbloorview.ca

You can also make a donation to support the Family Advisory Committee's goal to provide comfort packages to the parents of the 600 children who are admitted as inpatients each year.