Strategic Planning Process Update

In 2016, Roger Neilson House (RNH) marked its 10th anniversary of enriching the lives and providing services to children, youth, and families with progressive life-limiting illnesses. As RNH entered its second decade, the Board and management initiated a process to develop a new Strategic Plan. The organization is preparing to respond to the growing needs, challenges and opportunities that will emerge over the next decade in order to continue to provide children, youth, and families with the highest quality pediatric palliative care services. This important process will help us to be clear about the specific strategic directions that will guide our work over the next ten years.

A Steering Committee co-chaired by Megan Wright and Dr. Bill Splinter was established to guide the process. The members of this committee include Mindy McHardy/Kimberly Waara (RNH Family Advisory Committee), Ruth Hartanto (RNH Board of Directors), Megan Sloan and Helen Yoxon (RNH Staff), Mac Hiltz (RNH Volunteer), and Dr. Chris Vadeboncoeur (Physician). Key informant interviews were conducted by Beth Allan, the consultant hired to guide this work, with many individuals from within RNH, CHEO-OCTC, pediatric hospices both Nationally and Internationally, and community organizations to gather information about the wider environment and emerging trends and policy directions that influence the work of RNH. Through this process challenges and issues that the organization faces in preparing for the future were identified.  We then began an engagement process whereby we involved a full range of stakeholders including our families, volunteers, staff, physicians, the RNH Family Advisory Committee (FAC), and Board of Directors.

In September the Board of Directors approved the revised Mission, Vision, and Strategic Directions for Roger Neilson House. We are currently working on a communication strategy for our community and have presented this information to our staff, volunteers, and the FAC. We will also be reviewing our values statements and creating a work plan for short, medium, and long term goals.

On behalf of the Board and our Management team we would like to thank everyone who contributed to the strategic planning process by providing their valuable input, which helped us get to this point. We are very excited to embark on a new journey, and look forward to the coming years and all of the upcoming opportunities to learn, develop, and bring the plan into reality.

Megan Wright, Executive Director & Les Bell, Chair, Board of Directors

Volunteer Services Update

It has been a pleasure being back at Roger Neilson House and working with an incredible team of staff and volunteers. In my new role, I have had many conversations with current and prospective volunteers and I am continuously amazed at how people find time in their busy lives to give back to their community. Fortunately for us, many are choosing Roger Neilson House to donate their time, expertise, and talents.

Since the summer, we have been actively recruiting new volunteers to fill a number of roles. We set a goal to recruit 35 by the end of the year and we are currently at 15. You can help us by encouraging friends, family and colleagues to apply, which can now be done from our website. Alex and I have been attending various volunteer fairs and events and meeting with promising prospective volunteers. Our most pressing needs are for Play and Learn, Visiting Home Hospice, Reception, and General Housekeeping volunteers.

This summer, we had several volunteers involved with the success of the summer camp. Some of these volunteers were under the age of 18 and did an amazing job. For that reason, we will be more flexible about the age to volunteer. Moving forward, we will consider people slightly under the age of 18 if they show the maturity, skills, and passion needed to join the Roger Neilson team. We hope that this will attract even more motivated, creative, and fun volunteers.

Finally, we know that volunteers are important and integral members of the team. They have extensive knowledge and experience with us, both individually and collectively. They also bring valuable talents from their life outside of Roger Neilson House.  In order to learn from volunteers and get their perspective on matters important to us, we are creating a Volunteer Advisory Committee. This will provide an additional opportunity to involve our volunteer team in our efforts to continuously improve the care and services we offer at Roger Neilson House.

Many thanks to our amazing volunteer team for the warmth and dedication they bring to Roger Neilson House every single day!

Bruno Perrier, Manager, Community Engagement and Volunteer Relations

A message from the Family Advisory Committee Chairperson

The Family Advisory Committee has begun meeting again following the summer break, and our agendas have been full! We have reviewed and provided feedback on the Family Satisfaction Survey and the Admissions Handbook (draft). We have also had a visit from Jacqueline Belsito of the CHEO Foundation to review the role they play in RNH fundraising.

There are many new initiatives in the works and we anticipate this being a busy year.  Subsequently, the committee decided that in order to effectively fulfill our mandate to provide timely constructive feedback from a family perspective, the committee would need to convene more frequently. Meetings are now scheduled for the first Monday of every month.

Ordinarily, the FAC would have finalized priorities for the year by the end of September. This year, we felt that it would be useful to wait until the new Strategic Directions for RNH are presented; our Workplan will be guided by the emerging themes.

If you would like to know more about the FAC please contact Bruno Perrier, Manager, Community Engagement and Volunteer Relations at

Have a lovely autumn!

Kimberley Waara, Chair, Family Advisory Committee

Rec. Therapy Update

Music Care Program

We have been busy over the last couple of months preparing and structuring a new music care program for Roger Neilson House. We are planning to start a once a week structured  program in our beautiful new music space located in the basement of RNH as well as incorporating music into more of our everday programming at the house. We have recently gotten a Baby Grand Piano, as well as new guitars and drums to add to our collection thanks to our generous donors. We are busy getting all our instruments ready for the kids to use and enjoy. Stay tuned for more information to come!

Roger Neilson House Summer Day Camp

We were very busy this summer with smiles, giggles, singing and laughter as we hosted our first ever summer day camp at Roger Neilson House.  For three weeks of the summer we had 6 RNH children admitted as campers to our summer day camp.
This kids had so much fun riding on the magic school bus with Miss Frizzle and traveling through time! Crafts were made, games were played, talent shows were had, and laughter was brought to the entire house. Thank you to the volunteers, families, and staff that participated in our new program, it was a success!!

Zen Zone

This spring the Recreation Therapy program launched a brand new program called “Zen Zone”.  This program uses modified yoga, breathing, music care, and Thai massage to provide an accessible movement program to our children and their parents.  Technique’s done in class are partner based with the goals of encouraging mobiilty, self-expression, increase comfort, and use the power of breath to encourage relaxation. All RNH children and their parents are invited to join us for this class that runs on a bi-monthly basis.

Katt Brook & Danielle Scarlett, Recreation Therapists

Admissions Update

Discharge Times

For the last year or so we trialed a new discharge time of 6 pm.  Frequently the overlap of children being admitted and those awaiting discharge resulted in too many children being in the house at the same time. This has the potential to create an unsafe situation.  After much discussion and consultation with the Family Advisory Committee, we made the decision to change the time of discharge to no later than 4 pm.  Admission times will remain the same – between 1 & 4 pm.

Pre-admission Questionnaires/List of Current Medications

When completing the pre-admission questionnaire, parents have been required to attach a list of current medications provided by their pharmacy.  The reason for this request is to verify the medication name, dose and route of administration, and to minimize the risk of error.  There have been some issues with the documents we have received. The Manager of Kidcare Pharmacy at CHEO has made the following suggestion to help ensure we get the information we need: Please ask your pharmacy for a Condensed Patient Profile reflecting the last month only. Click here for a copy of what the profile should look like. Please do not hesitate to contact Nancy Graham, Quality Coordinator, at 613-523-6300 x619 if you have any questions.  We thank you for supporting our efforts to improve the care we provide to your children.

Nancy Graham, Quality Coordinator

Social Work Update

As the fall leaves begin to take colour, the support groups offered at Roger Neilson House have begun to transform as well. Extended family members of Roger Neilson House are now being offered the support of a Grandparent Bereavement Support Group. This is a six session therapeutic group facilitated by 2 registered staff, and opens space to acknowledge the isolation and helplessness that grandparents can experience when grieving the loss of a grandchild. Roger Neilson House also offers families, both past and present, an opportunity to connect with one another with a  non-facilitated “drop in” Coffee Chat Time. Registration is not required and the group is held the 4th Tuesday of each month from 11am-1pm. In addition, the Parent Support Group is now being offered at two separate times: The 2nd Tuesday of every month, 6-8pm, and the 3rd Tuesday of every month, 11am-1pm. This group is open to all families who have a child currently involved with the CHEO Palliative Care Team and/or Roger Neilson House. The Parent Support Group provides a safe space for parents to share their thoughts, emotions and coping strategies, as well as an opportunity to connect and develop relationships with other parents throughout their child’s illness.

Roger Neilson House is pleased to announce the addition of two new services under the umbrella of Group Support. Please see the description for each below.

Monthly Drop-in, RNH Bereaved Families Support Night

At Roger Neilson House (RNH), we recognize that the grief of losing a child is a lifelong experience. Starting in November we will be offering a monthly drop-in group for parents to support one another through their grief experience. This group will be facilitated by Social Work, and can be attended by any bereaved parent who has previously participated in RNH programming. When at the group, parents can expect a safe space to share their experience with others who understand, and an opportunity to develop friendships. Some sessions may include a specific topic or guest speaker. If you are interested in attending, please contact Social Work to gain more information. The first session will be held on November 22nd from 5:30-7:00PM; this happens to be the day after National Bereavement day. We will be posting the schedule for the monthly sessions on our News and Events webpage.

RNH Facilitated “Check-In” for newly Bereaved Parents

Following the loss of a child, many RNH parents who have attended the Parent Support Group over the years have a desire to reconnect with the families that they have shared and bonded with, in a facilitated setting. As families move on from the Parent Support Group after their child has died, this can be yet another transition as they explore the different supports available to them as bereaved families. As such, RNH would like to be able to offer these families an opportunity to meet with other Parent Support Group members for a check-in, at a time that is convenient for the bereaved family. This one time session would be facilitated by a social worker, and follow a similar format as the Parent Support Group. Although Parent Support Group families and bereaved families can continue to connect at the RNH Coffee Chat Time or in the community, some families may welcome a facilitated session. This one-time session will be offered to all newly bereaved RNH families who attended the Parent Support Group.

If you have any questions or interest in participating in a support group, please contact social workers Madelena Arnone or Carol Chevalier for more information.

With the growth of our bereavement services, and the addition of a third Social Worker, Roger Neilson House will now be focusing some of its Social Work resources on expanding services to families experiencing a perinatal loss. To this end, Social Worker Carol Chevalier’s portfolio will now primarily include offering, and expanding, services to families who have experienced a perinatal loss. Carol will maintain many of the families that she currently works with.

In looking towards the holiday season, this can be an especially difficult time of the year for families experiencing grief and loss. Author and Grief Counsellor Alan Wolfelt, Ph,D. explains that “since love does not end with death, holidays may result in a renewed sense of personal grief—a feeling of loss unlike that experienced in the routine of daily living. Society encourages you to join in the holiday spirit, but all around you the sounds, sights, and smells trigger memories of the one you love who has died”(2015). Roger Neilson House will be holding a holiday memorial on December 3 and extends an invitation to bereaved families to attend and remember their children. Details for the Holiday Memorial will be sent out to families via email and will be posted on the Roger Neilson House website.

Madelena Arnone & Carol Chevalier, Social Workers

The Marion Rattray Award of Excellence in Pediatric Palliative Care

Lynn Grandmaison Dumond is the 2017 recipient of The Marion Rattray Award of Excellence in Pediatric Palliative Care.

In 2016, the leadership team at Roger Neilson House established The Marion Rattray Award of Excellence in Pediatric Palliative Care, in honour of Marion Rattray’s contribution to pediatric palliative care and to Roger Neilson House. Marion, who was the Manager of Roger Neilson House from 2006 – 2016, retired in 2016 after over 40 years of service at CHEO.

This award, given annually, recognizes the outstanding contribution of a Roger Neilson House / Palliative Care Team staff member who demonstrates the following attributes and is nominated by his or her peers:

  • Shows creativity in fulfilling the dreams of children facing a life-limiting illness;
  • Goes above and beyond in helping to meet the needs of  the children and families using Roger Neilson House services;
  • Acts as an advocate for children, families, and pediatric palliative care; and
  • Works collaboratively with his or her colleagues and helps to promote a positive work environment in the face of grief and loss.

Congratulations Lynn on this well-earned honour!