Roger Neilson Children’s Hospice provides care for children with progressive, life-limiting conditions. Eligibility is based on the following criteria:

• Children are referred through the CHEO Palliative Care Team before their 18th birthday. RNCH services will extend to their 19th birthday.
• Families living in Ontario with a valid OHIP card are eligible. Children and families in Quebec or Nunavut may also be supported, with some services varying in accordance with provincial or territorial guidelines. These details are always discussed with families at the time of referral.
• The child has a life-limiting illness with a progressive decline in health status.
• The child and family are connected with CHEO’s Palliative Care Program.
• Families are supported and encouraged to participate in care planning with the team at Roger Neilson Children’s Hospice.

If you have questions about eligibility, our team is here to help. Contact us at [email protected]

A referral to the CHEO Palliative Care Team can be made for any family who may benefit from their services. Early referrals are encouraged so families can establish a therapeutic relationship with the team.

• Referrals must be from a physician or nurse practitioner involved in the child’s care.
• Non-urgent referrals can be sent to the CHEO Pediatric Palliative Care Team via EpicCare Link or by fax at 613-523-3617.
• Referrals from CHEO teams can be sent via Epic.
• Urgent referrals: Healthcare providers should call CHEO at 613-737-7600 #0 and ask for the Palliative Care physician on call.

Assessment: After a referral is received, the team will assess eligibility. If the child is deemed eligible, a letter will be sent to the referring provider, and the team will inform the family about eligibility for care at Roger Neilson Children’s Hospice.

For more referral information, interested families can call Roger Neilson Children’s Hospice at 613-523-6300 ext. 4600.

Caring for a child with complex needs can be both rewarding and demanding. That’s where our respite care comes in. It’s a chance to take a well-deserved break, knowing your child is in caring and capable hands here at Roger Neilson Children’s Hospice. This time allows you to rest, recharge, and care for yourself while our team looks after your child’s well-being, with 24-hour care.

Beyond the medical care, respite is also an excellent opportunity for your child to enjoy themselves, make new friends, engage in fun activities, and create happy memories in a safe and supportive environment. We’re here to provide a comforting and joyful experience for your child and a restful one for you.

There are two categories of respite care:

1. Pre-booked respite care

We’re pleased to offer up to 28 days of respite care each calendar year for your child. We know how important these breaks are for your family, and our team at Roger Neilson Children’s Hospice will always do our very best to honour your bookings. We kindly ask that you have a backup plan in mind, in case we need to adjust a booking due to an urgent situation for another family.

Generally, stays are for up to two weeks at a time, except during the summer. We also offer opportunities for your child to stay for two holiday weekends each year, either March Break or the Christmas Holiday. 

In the summer, stays are typically up to 7 days. To ensure we can meet your needs, we encourage you to pre-book your respite stays up to six months in advance. 

We truly understand how vital these visits are for you and your family, and we’ll work closely with you to accommodate your requests as much as possible.

2. Emergency Short-Term Respite Care: 

In the life of a family, unexpected situations arise, and you may need immediate support. If your family is experiencing a crisis and your child requires urgent care, we will do our best to be here for you. We strive to provide emergency respite within 24 hours of your request, offering up to 72 hours of care. If needed, and as our availability allows, we’ll do our best to extend that time to support your family through particularly challenging times.

Non-Ontario Residents: please be in touch with our Admissions and Care Coordinator at [email protected]  to learn more about applicable details.

We understand that going home from the hospital is a big step; one filled with hope, but also uncertainty. Our Transition to Home Care program is here to walk alongside families as they take that step. With compassion and expertise, we support each family through a carefully planned transition that prioritizes safety, comfort, and confidence. Together, we ensure that families feel prepared and empowered to care for their child’s medical needs in the place that matters most: home.

What the Transition to Home Care Program Offers:

• Personalized Planning: Every child’s journey is unique. We work closely with families to create a transition plan that reflects their goals, timelines, and care needs.
• Hands-On Learning & Support: Through one-on-one training and 24/7 nursing support, caregivers learn to manage complex care with skill and heart.
• Seamless Coordination: We collaborate with the Home and Community Care team to ensure essential supplies and supports are ready at home.
• A Gentle Step-Down Option: For some families, a short stay at the hospice after hospital discharge offers a chance to build confidence in a supportive environment, before fully transitioning home.

Why It Matters:

• Families feel supported, not alone, during a pivotal time.
• Practical and emotional guidance helps ease the stress of change.
• Our team works hand-in-hand with CHEO’s Palliative Care Team and community partners to create a circle of care around each family.

The Transition to Home program at Roger Neilson Children’s Hospice reflects our purpose: to enhance quality of life, provide compassionate care, and be a supportive presence for families, wherever they are in their journey.

At Roger Neilson Children’s Hospice, we believe every child deserves to feel safe, comforted, and cared for at every step of their journey with us. Our Symptom Management program is at the heart of that belief, offering compassionate, expert care that brings relief and peace to children living with life-limiting illnesses. Surrounded by warmth and supported by a dedicated team, families find reassurance knowing their child’s comfort is a top priority.

What Symptom Management Looks Like:

• Gentle Pain and Symptom Relief: Our team works carefully and thoughtfully to ease pain and reduce discomfort, helping children feel as well as possible, day by day.
• Tailored, Thoughtful Care: Every child is unique. That’s why we create individualized care plans designed around each child’s needs, with regular reassessments to adapt as things change.
• Support Around the Clock: Our skilled team, including pediatric palliative care physicians and registered nurses, is available 24/7, offering medical expertise and a listening ear.
• Whole-Child, Whole-Family Approach: We care for more than symptoms. Emotional, psychological, and spiritual needs are also embraced as part of a holistic circle of care.

Why It Matters:

• Children experience greater comfort and quality of life.
• Families feel supported and guided through difficult times.
• The space and support allow for meaningful moments, memory-making, and legacy-building on the family’s terms.

Symptom management at Roger Neilson Children’s Hospice is more than a medical program. It’s part of our commitment to surround children and their families with comprehensive care, dignity, and gentle support as they walk this path together.

At Roger Neilson Children’s Hospice, we walk beside families during one of the most challenging chapters of life. Our End-of-Life Care is rooted in compassion and dignity, providing a sanctuary where children can be held in comfort and families are surrounded with support. Every detail is thoughtfully designed to ensure peace, honour each moment, and help families feel they are not alone.

What End-of-Life Care Means Here:

• Comfort First: Our clinical team provides gentle, expert care to relieve pain and manage symptoms so each child can be as comfortable as possible.
• Care for the Whole Family: From parents to siblings and grandparents, we offer emotional, practical, and spiritual support for everyone walking this journey together.
• Creating Memories That Last: Families are invited to share meaningful moments and create keepsakes celebrating their child’s life and legacy.
• Holistic, Heartfelt Support: We care for more than physical needs, supporting emotional and spiritual wellbeing, and simply being present when words are not enough.
• Continued Care After Loss: Grief doesn’t end at goodbye. We offer bereavement support for parents, siblings, and extended family through counselling, groups, and one-on-one guidance.

A Place Like Home

The hospice is more than a health care setting; it is a warm, home-like space where families can be together. Our team, specially trained in pediatric palliative care, brings not only expertise but empathy, every step of the way.

Why This Care Matters:

• It ensures children experience comfort and love in their final days.
• It helps families navigate loss while honouring the life of their child.
• It offers peace during one of life’s most difficult transitions.

At Roger Neilson Children’s Hospice, we believe that even in the most challenging moments, parental and familial love endures and every life deserves to be cherished, remembered, and deeply honoured.

Before the first admission, please complete and return the Roger Neilson Children’s Hospice intake questionnaire sent by the Admissions and Care Coordinator through MyChart to permit the development of the child’s Roger Neilson Children’s Hospice Care Plan and chart in Epic (the electronic health record).

MyChart is a secure, online patient portal that connects you to parts of the EHR and health care teams. It provides access to your child’s health record and lets you see medications, test results, appointments, and other valuable information online or via a mobile device.

The MyChart access request form can be found online at www.CHEO.on.ca or through the CHEO Health Records department.

For more information and how to register for MyChart, see MyChart/CHEO  (https://www.cheo.on.ca/en/visiting-cheo/mychart.aspx)

Admission to Roger Neilson Children’s Hospice occurs between 1 pm and 4 pm. Upon arrival on site, the Admissions and Care Coordinator will work with you to schedule an appropriate time. The process may take an hour or so; please plan to be available for this length of time.

You must either be present at admission or immediately before admission to ensure the necessary documentation is completed and to ensure equipment and supplies are delivered. You will be asked to unpack your child’s equipment and supplies before you leave.

At the time of admission, the admitting nurse will complete the following admission assessment information:

• Infection prevention and control screening. If your child is showing symptoms of infection, the admitting nurse will contact the Palliative Care Physician for further direction.
• Care-plan update.
• Medication reconciliation.
• Focus of admission.
• Consents.
• Emergency caregiver.
• List of approved visitors.
• Demographics update.
• Allergy review.

Pack everything your child might need daily except basic linens. Please label items and review specific questions with the Admissions and Care Coordinator.

Packed items include:

• All prescription and over-the-counter medications, including an Epi-Pen if required.
• All prescribed or specifically required dietary supplies.
• Medical equipment (e.g., respiratory and feeding equipment and supplies).
• Emergency kits (e.g., G-tube, tracheostomy, etc.).
• Communication devices.
• Mobility devices.
• Clothing and toiletries (sufficient quantities).
• Personal play and comfort items.

Before each re-admission, the Admissions and Care Coordinator will send a message to your child’s MyChart that will include one of the following attachments:

• A Roger Neilson Children’s Hospice intake questionnaire (if the previous questionnaire was completed more than one year ago).
• A Pre-Admission questionnaire (if the previous admission was less than one year ago).

The Admissions and Care Coordinator will work with you to schedule an appropriate time until 4 p.m. You will be asked to be available to pack your child’s equipment and supplies. If requested, your child may be discharged to the school bus. Equipment and supplies will not be sent to school. Please ensure you have all of your child’s belongings and medications before you leave.

We want your child to feel at home here. That’s why we offer a range of daily activities designed to meet their unique needs and the care they are receiving. At Roger Neilson Children’s Hospice, we strive to provide a warm, comfortable home-away-from-home experience in an adapted, inclusive environment.

Our team offers a variety of therapeutic play activities, including arts and crafts, music therapy, and story time, all designed to bring joy and comfort to your child. In our playroom, filled with colourful toys and laughter, your child can find moments of joy and connection with other children. 

Your child can also explore our Snoezelen Room, where gentle lights and soothing sounds create a calming and comforting environment, a space designed for relaxation and sensory exploration. Our dedicated and caring volunteers are always on hand to engage with the children and provide extra support and companionship during playtime. 

These daily play activities allow your child to connect with others, share smiles, and create precious memories.

Maintaining your child’s school routine can be important during their respite stay with us. If your child will be attending school, we’re here to help make the coordination as smooth as possible. Just let our staff know the pick-up and drop-off times and any specific supplies your child needs to take to school daily. We’ll work together to ensure their school days continue comfortably and without disruption.

The second floor of Roger Neilson Children’s Hospice is designed to offer both comfort and calm, giving families a private, peaceful space to rest and be together.

• Guest Rooms: There are four single rooms and two double rooms, each thoughtfully equipped with a private bathroom and wheelchair-accessible shower, as well as a TV and DVD player for movie nights or quiet downtime.
• Family Suites: Two specially designed family suites are available for families who wish to stay close as their child nears the end of life. These welcoming spaces include a guest bed and a king-sized bed,  table and chairs, couches, a microwave, a compact fridge and a TV and DVD player for shared moments.
• Families are welcome to use the laundry room and tub room when available. A nearby nursing station ensures care is always available, and a secure medication room helps keep everything safe and organized.
• Fresh towels and linens are always provided, and if you’ve forgotten something, we offer emergency toiletry kits to help you feel at home.

Complimentary meals are provided for children. Family meals can be arranged at a minimal cost or prepared in the family kitchen. Dietary needs are always accommodated.

If a child develops an infection at Roger Neilson Children’s Hospice, staff will promptly contact the family to discuss an alternate care plan. Those with infection symptoms may need to be discharged to protect all children. Contact information for a capable alternate caregiver is necessary if a caregiver is unavailable during admission. Anyone recently exposed to or exhibiting symptoms of an infectious illness (like measles, cough, or fever) is asked to postpone their visit until they are well again.

If you have additional questions, please contact our team at [email protected]

Families are welcome at Roger Neilson Children’s Hospice any time, day or night. Our doors are open 24 hours a day, 7 days a week, because we understand that love, comfort, and connection don’t follow a schedule.

Visitors must be approved by the child’s family and listed in the pre-admission questionnaire. This helps us respect each family’s wishes and ensure visits feel right for them.

To ensure each visit is as smooth and meaningful as possible, we kindly ask families to coordinate with the nursing team. This allows us to honour your child’s care plan while creating space for quiet moments and togetherness when they matter most.

Young visitors are welcome 

We love seeing siblings share special moments. Children are welcome to visit, we do ask that all young visitors be supervised by an adult. If a child under 18 plans to stay overnight, they’ll need permission from their legal guardian and an adult present throughout their visit.

A Few More Helpful Notes for Visitors 

• Please connect with the nursing team before arriving so we can help make your visit as smooth and meaningful as possible.
• Community caregivers may visit with family approval, but they won’t provide care unless parents or guardians request it, and the plan is coordinated with our nursing staff.
• These guidelines help us create a welcoming space that balances safety with the freedom to be close, together.

To protect the children in our care, many of whom are medically fragile, visitors should be free from symptoms like fever, cough, rash, or stomach upset. If you’ve recently been exposed to a contagious illness like measles or chickenpox, we kindly ask you to postpone your visit.

We want every part of your stay at Roger Neilson Children’s Hospice to feel as smooth and stress-free as possible, including parking. 

For families staying overnight: 

• Ask your nurse or one of the Personal Support Workers for a family parking pass.
• A $10 deposit is required (fully refunded once the pass is returned).
• Instructions on where to park with the pass will be provided.

For visitors: 

• Free parking spaces, including accessible parking, is available next to the building in front of the Farm Boy Play Park.
• A daily parking permit is required, and can be obtained from the reception volunteer. It must be visibly displayed on your dashboard.
• A new permit is needed each day you park. These parking spaces are monitored by city by-law officers, and vehicles without a parking permit may be ticketed.

If no parking is available: 

• Please ask the reception volunteer for alternatives. Options may include using the CHEO visitor parking lot (standard rates apply).