Family Advisory Committee

Roger Neilson House is committed to family-centered care and ensuring guests and their families receive the best possible care. Feedback from families is essential for Roger Neilson House to meet a standard of care that exceeds expectations. At Roger Neilson House the Family Advisory Committee (FAC) ensures that the voices of our guests and families are heard. The Committee acts as an important integrative link for families, the Board of Directors, management and staff, and provides families with a formal opportunity to share their views regarding the services of Roger Neilson House and contribute to the development of programs.

The FAC meets bi-monthly, excluding summer months. It is made up of family members, a youth guest, staff members and at least one member of the Board of Directors, who acts as the committee chair. Below you will find the names of the Family Advisory Committee members.

If you would like more information or would like to participate in the FAC, please contact Bruno Perrier, 613- 523-6300 x 605 or bperrier@cheo.on.ca

Click here for more information about the Family Advisory Committee

The Family Advisory Committee

    • Kimberley Waara (Chair)
    • Alex Vanzyl
    • Katelyn Howse
    • Richard Ouimet
    • Yara Saikaly
    • Lillian Kitcher
    • David Bell
    • Caroline Signorini
    • Jean Murray (Volunteer Recording Secretary)
    • Nancy Graham (Roger Neilson House Staff Liaison)
    • Anne Jones (Roger Neilson House Nursing Representative)
    • Beatriz Alvarez (Roger Neilson House Volunteer Representative)

About the Chair

Kimberley Waara is a native of the west coast of Canada and has lived in Ottawa since 2002. She is married to her husband, Jeffrey, and is currently a full time parent to their four year old daughter Zoe.

Kimberley was first introduced to Roger Neilson House in 2010 when 20 weeks pregnant. Their baby was diagnosed with Hypoplastic Left Heart Syndrome, a complex and rare heart disease where the left side of the heart is critically underdeveloped. Amid the devastation and fear, Kimberley and Jeffrey eventually found themselves at Roger Neilson House where they were relieved to meet with an authentic and compassionate team who honored Ethan’s life as much as they did.

It was clear that embracing Perinatal Hospice was the right choice for their family. Just hours after Ethan’s birth, they arrived at RNH where they lived and loved Ethan until his passing seven days later.  Attending RNH bereavement group, and the extraordinary gift of legacy making has helped to soften the heartbreak that inevitably follows the loss of a child.

Today it is with great joy and peace that Kimberley speaks about Ethan and his amazing ‘little-big’ life! She is a member of the Speakers Bureau and welcomes any opportunity to talk about the extraordinary people and services offered at RNH.

As Kimberley continues along the perennial path of celebrating and grieving Ethan’s beautiful life she has become evermore passionate about how to best honour the life of every individual. She is excited to fulfill the role of Family Advisory Committee Chairperson this year and welcomes the opportunity to engage with and represent all families at Roger Neilson House.

Message from the Family Advisory Committee

Families and guests often see many different staff and volunteers during their stay at Roger Neilson House. The Family Advisory Committee discussed their experiences and what has made them more enjoyable.

Thank you for…

  • Recognizing the uniqueness of our child
  • Being respectful and accepting of our family and child regardless of our situation
  • Remembering that each admission is unique – there may be a new set of circumstances at each visit
  • Trusting our instincts
  • Being open to what we are saying or suggesting, and explaining why it may not be feasible
  • Involving us on any changes to the care plan
  • Being sensitive and empathetic to our emotional state; being in tune with the changing situation
  • Giving us time to consider our options
  • Re-assuring us when we have doubts or second guesses
  • Respecting and supporting our child’s choices
  • Taking your time, being there to listen and share our story
  • Respecting our privacy by being aware of what you’re saying when and where

We appreciate it when you…

  • Take the time to introduce yourself and explain your role
  • Find out how we would like to be addressed
  • Let us know what we can do to help, but also giving us the option of not doing anything
  • Are aware of your language. “I’ll be right back” can mean different things to us, please try to be specific
  • Take care of our medical equipment and are prudent with medical supplies
  • Have an understanding of our child’s diagnosis and history – we can fill in the blanks!
  • Ensure there is support for us when you are delivering bad news especially when there is only one parent present
  • Say goodbye at the end of your shift and let us know who will be replacing you.

Mandate of the Family Advisory Committee

Terms of Reference

Mandate

The Family Advisory Committee (FAC) is an important integrative link for families of Roger Neilson House, the Board and employees. It provides families a formal opportunity to:

  1. Share their views regarding the services of Roger Neilson House and
  2. Contribute to the development of the programs at Roger Neilson House.

The mandate of FAC is as follows:

  1. To advise the Executive Director:
    1. To offer the family perspective regarding issues concerning the family experience at Roger Neilson House
    2. To provide advice to the Executive Director to ensure decisions focus on the implementation of family-centered practices
    3. To review and provide feedback regarding policies and initiatives (e.g. family surveys, family literature), etc.
  2. To advise staff and volunteers:
    1. To provide advice to staff and volunteers with a view to help plan, create and enhance programs for guests and families through participation on committees, focus groups, and other partnerships as needed
    2. To assist with education and orientation, particularly with new staff members, medical students and volunteers
  3. To be a ‘voice’ for other families, ensuring that all families receive support and care that:
    1. Meet their needs
    2. Are in line with Roger Neilson House vision, mission and value statements
    3. Respects different cultural beliefs and customs
  4. To ensure that the perspective of guests and siblings are considered when key decisions are made by the Board or staff
  5. To participate in networking with other groups such as CHEO, CFAN, OCTC and Rotary Home as appropriate.

Composition

Composition of the Family Advisory Committee will include families, youth, staff and Board members, as follows:

  • At least 5 family members (may include foster parents/alternate care giver), at least one from each type of service received – respite, end-of-life care, bereavement support.
  • 1 staff member from the CHEO Palliative Care Outreach Team
  • 1 nurse from Roger Neilson House
  • One volunteer
  • Board members may also sit on the FAC

Every attempt will be made to achieve representation that includes diversity of:

  • Geography within the service region of Roger Neilson House
  • Skill set
  • Experience
  • Language
  • Culture

A sibling representative will be considered in future for membership.

Process for Recruiting New Members

Family members interested in joining the FAC may contact the Chair or Manager to discuss their potential membership. Together with Executive Director, the chair and manager will recommend interested individuals to the committee.

Meetings and Quorum

Every effort will be made to respect the demands on families. Work will be done by time-limited task forces and via e-mail to reduce the meetings required. Maximum meeting frequency will be once every 2 months (not in July, August and December): September, November, January, March, May, end of June. Quorum will require 50% of members with at least one Board member, one staff member and one family member.

Reports and Minutes from past FAC Committee Meetings


Thank you! In appreciation of you and your service on the Family Advisory Committee.