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Palliative Care Resources
Please have a look through a list of our resources and speak with your social worker, or a member of PACT to find out what you might be eligible for.
Hospices
Hospices are non-profit community-based services that provide practical, respite and home hospice care for people living with life limiting illnesses. Services support children who are being cared for in their homes, as well as, parents and siblings.
Services may include: home visitors, caregiver relief, transportation, meal preparation, therapeutic programs (e.g. art therapy), emotional/spiritual support, bereavement/friendly visits and bereavement support groups.
Services can be provided to the ill child, siblings, parents, or any other family member.
To locate a Hospice in your area:
Residential Paediatric Hospices
There are currently two pediatric residential hospices in the Greater Toronto Area, Emily’s House and Darling Home for Kids.
These hospices provide a home-like setting and can be an alternative location for care. They offer comfortable, medically supervised care in a home-like setting, with professional staff and trained volunteers who provide a variety of programs for medically complex children, children with life-limiting or life-threatening illnesses and their families. Children may go to a residential hospice for respite care or for end-of-life care.
Please visit the below websites for more information.
- Emily’s House (Toronto) - this YouTube video describes hospice services for Emily's House
- Darling Home for Kids (Milton)
- Roger Neilson House (Roger's House, Ottawa)
Financial resources
ACSD (Assistance for Children with Severe Disabilities)
Parents who have a child with severe disabilities may be eligible for assistance, based on their income level, from the Assistance for Children with Severe Disabilities program. The ACSD program provides help with the ongoing extraordinary costs arising from the disability. This fund is available through the Ministry of Children and Youth Services.
EI Benefits for Parents of Critically Ill Children
If you are a parent who has to be away from work to provide care or support to your critically ill or injured child, you could be eligible for Employment Insurance (EI) special benefits for Parents of Critically Ill Children (PCIC). This is an income support benefit for families caring for a seriously ill relative through the Employment Insurance Program. Up to six weeks of benefits will be provided. Criteria eligibility are in place.
Easter Seals Society
Phone: 416-421-8377
Phone: 1-800-668-6252
Offers many services to children and youth with physical disabilities through direct services and programs. The society also does research, advocacy and public education.
Jennifer Ashleigh Foundation
Phone: 905-852-1799
E-mail: generalmail@jenash.org
Mandated to improve the quality of life for seriously ill children and their families they provide financial support for costs surrounding a child's illness. Ontario residents only.
Special Services at Home (SSAH)
Through the Ministry of Community and Social Services, this program focuses on supporting families in caring for a family member within their home.
The Unforgettables Fund
The Hospital for Sick Children
Speak with your Social Worker or Grief Support Coordinator
Offers funding to help SickKids families with limited income provide a dignified funeral for their child.
Financial Assistance with Medications
Ministry of Health and Long Term Care
1-800-268-1154
The Trillium Drug Program helps people who have high drug costs in relation to their income
For families who are unable to return to work after their child has died, there is a new law in place that provides job guarantee for up to 2 years for any parent who is working prior to the child's death and is unable to return to that role. There is currently no financial renumeration for this but leaders are looking to see if it will be possible.
Nursing and respite services
Nursing Support in the Community
Nursing services at home are provided through the Community Care Access Centres (CCACs). Nursing support can look very different depending on the needs of the child. A CCAC coordinator will do an assessment of the child to determine what nursing support the child needs at home.
Respite
Medical respite care programs offer families a break from the daily routine of caregiving. Respite is an essential component of pediatric palliative care. All parents need a break. But while most can access “babysitting” from the teenager down the street, this just isn’t an option for most parents of children with medical complexity.
Medical respite involves caregiving for complex patients by well trained staff familiar with medical technology, usually for short periods of time (hours to days). Enhanced Respite Funding is available for families who qualify through the Ministry of Health.
These funds can be used to reimburse a trusted friend, family member or other caregiver to watch a medically fragile child at home for a period of time. Residential respite services are also available and some are free of charge. Residential respite includes 24-hour in-house clinical supervision for children with or without their families. Each program is unique; contact one directly to find out what other services they have to offer to your child and your family.
Some examples are below.
Please feel free to provide updated information to: lori.ives-baine@sickkids.ca
Educational opportunities
PACT is excited about having trainees join our team. For Fellowship and Elective descriptions, please visit the PACT Education section.
Offering Excellence Together: Paediatric Hospice Palliative Care
This is a four-day intensive training course for health care providers, community support program workers, etc. who are involved in the care of dying children and their families. The overall themes covered in the course are: principles of pediatric palliative care, symptom assessment and management, communication, end of life care, grief and bereavement care. The course is offered twice per year, once at SickKids and once in the community.
Course information will be updated soon.
Education contacts:
Kevin Weingarten
Program Director, Palliative Care Fellowship, Sickkids
kevin.weingarten@sickkids.ca
Jenny Loor
Administrative Coordinator
Paediatric Advanced Care Team (PACT)
Phone: 416.813.6905 | Fax: 416.813.7999
jenny.loor@sickkids.ca
PACT works with children who have serious or potentially life threatening illnesses.
Thoughtful articles that provide guidance and direction for anyone touched by grief.