For Families

We work closely with a variety of organizations that may provide assistance to families caring for children with progressive, life-threatening illnesses.

Members of the Canuck Place clinical team are able to assist you in learning more about the resources available in your community and support you in making appropriate referrals.

Note: any external links provided are for reference only and Canuck Place is not responsible for the content presented.

Children and Family Rights and Responsibilities

We are here for families. Canuck Place is committed to providing care that addresses the child and their family’s unique and changing needs throughout the progression of the illness and afterwards.

Decisions around care are always made in the best interest of the child. If there is a difference of opinion based on clinical assessment, there will be further discussion together with the healthcare team about the next steps.

You and your child/youth will have the right to:

  • Be informed about the care being given by Canuck Place in terms and languages that you and your child can understand
  • Participate in decisions and in the development of your child/youth’s care plan
  • Have access to your record and information about you
  • Ask for and receive help
  • Be treated with respect, compassion and courtesy, even when your views may differ
  • Privacy and confidentiality
  • Ask for clarification about the care you/your child/youth is receiving and to discuss this care with other health care providers
  • Receive care that is sensitive to you/your child/family’s needs and cultural, racial and religious heritage.
  • Decline healthcare services that are offered to you

In return, you and your child/youth are responsible to:

  • Discuss any concerns with the health care team
  • Identify your needs to a staff member
  • Treat the House, staff, and other families with respect.
  • Follow Canuck Place guidelines established for families (Family Handbook)
  • Provide complete and accurate health information about past and present matters.

Family Feedback

Canuck Place families have a direct impact on the care and services we deliver. We welcome and encourage all feedback whether positive or constructive.

How to Submit Feedback, Questions and Concerns

If you have any questions, concerns, or feedback about the quality of care and services provided by Canuck Place Children’s Hospice, or feel your rights are not being met, we encourage you to first discuss your concerns with your healthcare team or with the manager/director of the program area for assistance.

You are welcome to complete an online Feedback Form and we also have print forms available in our family suites, dining areas, and upon request at our front desks. All concerns will be taken seriously and followed up.

If your complaint remains unresolved after discussing the issue with the Canuck Place Care team, you may wish to contact the Licensing Officer of the Office of the Chief Medical Health Officer of either Health Authority.

  • Vancouver hospice complaints: contact Vancouver Coastal Health at 604-675-3800
  • Abbotsford hospice complaints: contact Fraser Health at 604-587-3936

Incidents:

An incident is an occurrence that affects or potentially affects your child or a family member. Examples are a medication error or a fall of a family member due to a wet floor. A manager/supervisor investigates the incident with the family and staff and identifies actions to be taken to prevent the incident from happening again.  All incidents are then reviewed by different safety committees to see if there are common issues that require new procedures or education,

If you notice an incident please tell your nurse.

A clinical team member can gather the relevant information, complete the documentation and submit for investigation and identification for improvements in our systems.

 

Child & Family Community Resources

Advocacy

BC Legal Services Society

The BC Legal Services Society provides legal aid services in BC.

Public Guardian and Trustee of British Columbia

The mandate of the Public Guardian and Trustee of BC is to:

  • Protect the legal and financial interests of children under the age of 19 years
  • Protect the legal, financial and in some cases personal and health care interests of adults who require assistance in decision making
  • Administer the estates of deceased and missing persons

Representative for Children and Youth

The Representative for Children and Youth supports children, youth and families who need help in dealing with the child welfare system, and advocates for changes to the system itself.

Disability Alliance BC

The BC Coalition of People with Disabilities (BCCPD) specializes in issues impacting the lives of people with disabilities through our direct services, community partnerships, advocacy, research and publications.

Canuck Place is also able to assist families in matters related to advocacy. To learn more, speak with our clinical team.

Transition

Download the Family Resources Youth Transition Program

Persons with Disability Benefit

The Employment and Assistance for Persons with Disabilities Act defines a person with disabilities as a person who is at least 18 years of age, with a severe physical or mental impairment that is expected to continue for at least two years.

A person with the PWD designation may be eligible for:

  • Monthly support and shelter assistance
  • Medical coverage which includes Medical Services Plan and PharmaCare coverage with no deductible, as well as other health supplements such as dental and optical coverage
  • A $500 earnings exemption per month
  • A low-cost annual bus pass
  • Exemptions from time limits and employment obligations for receiving assistance

Nidus Personal Planning and Resource Center

The Nidus Personal Planning Resource Centre is a non-profit, charitable organization. Nidus provides information to British Columbians about personal planning. Personal planning is the act of making one or more legal documents that authorize your personal supporters to help you manage your affairs or make decisions on your behalf if you need assistance due to illness, injury or disability.

Choice in Supports for Independent Living (CSIL)

Choice in Supports for Independent Living (CSIL) is an alternative for eligible home support clients. CSIL was developed to give British Columbians with daily personal care needs more flexibility in managing their home support services.

GF Strong Adolescent and Young Adult Program

The GF Strong Adolescent and Young Adult Program offers young people with acquired or congenital disabilities, living in British Columbia and the Yukon, with an opportunity to address their rehabilitation needs and the transitional tasks of adolescence.

Bridges to the Future

Bridges to the Future is a community based resource program designed to help youth gain independence as they transition toward adulthood. The program was created in 2002 to support youth between the ages of 15-24 with physical disabilities. The program is situated in Victoria but serves residents of BC and the Yukon.

Canuck Place Resource Materials

Family Handbook

The Family Handbook is a publication for families joining the Canuck Place program. It describes what families need to know about the care and services offered, guidelines and policies and other helpful information.

Parenting a Dying Child Resource Package

Parenting a Dying Child consists of 30 pamphlets that cover topics such as:

  • Critical decision making
  • Pain and symptom management
  • Emotional issues of the patient & family members
  • Talking about death and dying
  • After death and moving on

Part One: Making Hard Decisions and Symptom Management

Part Two: Talking About Dying; Honouring the Spirit and Caring for Your Child After Death

The team who developed this resource package includes staff from Canuck Place Children’s Hospice: Camara Van Breemen, CNS and Jennifer Ham, Nurse Clinician and staff from BC Children’s Hospital: Cindy Stuzer, CNS and Edna Durbach, Director of Patient and Family Education (retired).

Financial assistance for this project provided in part by the Diamond Heart Foundation, in coordination with the Soothe the Soul event.

Helpline for Children: Province of BC

Children and youth need to know that there are supports to help them if they feel unsafe. The BC Helpline for Children is a toll free number and can be used anywhere in the province.

If you have a concern about the safety and well-being of a child call 310-1234.

As a residential facility, Canuck Place Children’s Hospice wants to ensure that all children, youth and families are informed of their right to contact emergency services and the Helpline for Children operated by the Ministry of Children and Family Development. When staying at Canuck Place Children/Youth have access to phones in the hospice; in the family suites, family library and/or can ask to use the cellphone at Kids Counter in the hospice.

Learn More

Helpful Links

Canuck Place works closely with a variety of organizations that may provide assistance to families caring for children with progressive, life threatening illnesses.

Personal Supports

The Personal Supports website contains information about and links to programs that provide equipment and assistive devices or other personal supports to persons with disabilities in British Columbia.

Partnership for Parents

Partnership for Parents is a support network for Parents of Children with Serious Illnesses.

Lotsa Helping Hands

Lotsa Helping Hands is a free, private, web-based communities for organizing friends, family, and colleagues – your ‘circles of community’ – during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar.

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people and families with rare “orphan” diseases and assisting the organizations that serve them.

The Tiny Light Foundation

The Tiny Light Foundation is a non profit organization that provides professional photography for children and families that have been faced with a life altering diagnoses.

Now I Lay Me Down to Sleep

Now I Lay Me Down to Sleep mobilizes professional quality photographers to provide beautiful heirloom portraits to families facing the untimely death of an infant.

Ministry Assistance with Funeral Costs

When there are no resources available to pay for funeral expenses, the Ministry of Social Development may assist with these costs.

BC Family Residence Program

The Ministry of Health offers an accommodation assistance program to enable families to stay together when their child requires medical care at BC Children’s Hospital or Sunny Hill Health Centre for Children, including premature babies and newborns with other health concerns.

BC Children’s Hospital

Information about what to expect when visiting BC Children’s Hospital.

MyGrief.ca

An online resource supporting the grief journey.

Schooling Options

A quick guide to options for school for children on the Canuck Place program

In BC, families have three options for their child’s schooling. Your child may:

  • Attend a regular school (public or independent)
  • Attend a Distance Learning school (public or independent)
  • Homeschooling

Regular school

You can register your child at a regular school, which may be a Public or Independent school. 

  • Teacher(s) Your child will have a Classroom Teacher and a Resource Teacher/ Case Manager. The resource teacher overseas the education of all children who need learning support in that school. 
  • Special needs funding Your child will be evaluated by the school to determine if they qualify for a Ministry of Education Special Needs Designation which provides additional funding (to the School District) to support your child’s learning.
  • Independent Education Plan An IEP (Independent Education Plan) is written for your child when they first enroll with a school. This would be completed with input from you, the teacher(s) and any current therapists etc. that you would like to be involved. The IEP is updated annually.
  • Therapy The only therapy services provided by most school districts are speech-language pathology services and physiotherapy services. These services would be provided by therapists already employed by the school district and sometimes are only available on a limited basis.
  • Nursing support You may apply for nursing support in school through Nursing Support Services. If your child qualifies you can expect to receive 30 hours of nursing support in school and perhaps another five hours of support for travelling to and from school.
  • Education assistants A Student Support Worker (SSW)/Education Assistant (EA) will support your child in school. The level of support differs according to your child’s needs.If your child does not qualify for Nursing Support in school, most school districts will ask the local health authority to train EAs in the following aspects of care:  positioning, G-tube feeding, respiration issues, glucose monitoring and seizure management. EAs may also be trained in sensory regulation, hygiene and dressing support, feeding support, learning classroom routines, managing disruptive behavior and access to instructional supports.

Distance Learning school

You can register your child with a Distance Learning School (formerly known as online schools) which may be a Public or Independent school. 

Distance Learning is not the same as home schooling. With Distance Learning the child’s curriculum is developed by a teacher and you are responsible for delivering the instruction in your home.

  • Teacher(s) Your child will have either a Special Needs Teacher or a Classroom Teacher and a Special Needs Case Manager. The Case Manager overseas the education of all children who need learning support in that school. 
  • Special needs funding Your child will be evaluated by the school to see if they qualify for a Ministry of Education Special Needs Designation which provides additional funding (to the School) to support your child’s learning.
  • Independent Education Plan An IEP (Independent Education Plan) is written for your child when they first register with a school. This would be completed with input from you, the teacher(s) and any current therapists etc. that you would like to be involved. The IEP is updated annually.
  • The teacher(s) would communicate with you on a weekly basis to discuss your child’s curriculum and instruction.
  • It is quite possible that the teacher would never actually meet your child.
  • You would be expected to submit a brief report each week on your child’s progress. This may include input from therapists and can take the form of pictures, videos or writing. This is not an onerous task.
  • Therapy Therapists for your child (if appropriate) are managed by the distance learning school. The school will engage therapists considered appropriate for your child. This may include speech-language pathology, physiotherapy, occupational therapy, music therapy, art therapy and aquatic therapy services. Parents often wish to find the therapists themselves to make sure they will be a good fit with their child and most schools are happy for the child to continue with any therapists already working with the child if that is the parents wish.
  • Nursing support You may apply for nursing support during school hours through Nursing Support Services. If your child qualifies, you can expect to receive up to 15 hours of nursing support.
  • Education Assistants Some families, after consultation with their Distance Learning teacher, choose to use some of their child’s Special Needs funding to employ a part time Education Assistant/Support Worker. EAs in this situation do not need any medical training as there will always be a parent or nurse present. Please note that it can be difficult to find an EA to work part-time in your home.
  • Links to two distance learning schools in BC are given below for your reference:

    There are many other public distance learning schools in BC, including some district based schools.

Homeschool

You must register your child at a local school as a child being homeschooled.

All schooling, both curriculum development and delivery, is done at home by the parents. Limited funding is provided by the Ministry of Education and, as far as I understand, there is little or no extra funding for a child with special needs.

Additional information

Distance learning:

http://www2.gov.bc.ca/gov/content/education-training/ways-to-learn/online-and-self-paced-learning

Homeschooling:

http://www2.gov.bc.ca/gov/content/education-training/ways-to-learn/homeschooling

Family Advisory Council (FAC)

The Family Advisory Council provides direct feedback and input into Canuck Place.

Membership is comprised of up to thirteen (13) family members, one of whom is a Board member, whose children may benefit or have benefited from the services of Canuck Place and who are representative of the province and the programs offered.

Read our recent FAC Newsletters:

Bereavement Services

Here are a couple of links to important bereavement services dates and information:

Financial & Medical Benefits

Child Disability Benefit

The Child Disability Benefit (CDB) is a tax-free benefit for families who care for a child under age 18 with a severe and prolonged impairment in mental or physical functions.

At Home Program

The At Home Program is a Province of BC program intended to assist parents with some of the extraordinary costs of caring for a child with severe disabilities at home. It provides assistance in two main areas:

  • Respite Benefits allow parents to purchase respite services that best suit their needs.
  • Medical Benefits provide a range of basic, essential medical items including: medical equipment, school-age therapies, orthotics, audiology equipment and dental services.

A child may be eligible for both Respite Benefits and Medical Benefits, or a choice of one benefit. Please refer to the At Home Program Guide for eligibility criteria:

  • Canuck Place families traveling to the hospice for distances exceeding 80 km roundtrip are eligible for medical transportation reimbursements.
  • Medical documentation confirming the dates of admission is provided to families by Canuck Place and is required by the At Home Program for reimbursement.
  • Families requiring advance medical documentation can request this from our Intake Coordinator. Otherwise, families can request medical documentation from Canuck Place nurses or counselling team members while they are in house.

You can find more information in the At Home Program’s Frequently Asked Questions (FAQ).

Nursing Support Services

Nursing Support Services (NSS) supports children and youth with special health care needs and their parents by providing comprehensive nursing services in their home, school and child care settings.

Child Care Subsidy & Child Care Subsidy with Special Needs

Child Care Subsidy is a monthly payment to assist eligible British Columbia families with the cost of child care based on financial need. Additional subsidies are available for children with a disability.

Parents of Critically Ill Children - Employment Insurance Benefits

The Parents of Critically Ill Children (PCIC) benefits (up to a maximum of 35 weeks) under Employment Insurance (EI) are available to parents who have to be absent from work to provide care or support to their critically ill or injured child.

Compassionate Care Benefits

Compassionate Care Benefits are Employment Insurance (EI) are a six-week benefit paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill.

Ministry of Health Services Travel Assistance Program

The Travel Assistance Program (TAP) helps alleviate some of the transportation costs for eligible B.C. residents who must travel within the province for non-emergency medical specialist services not available in their own community.

Palliative Care Benefits

The BC Palliative Care Benefits Program supports individuals of any age who have reached the end stage of a life-threatening disease or illness and who wish to receive palliative care at home.

Healthy Kids Program

The Healthy Kids Program assists low income families with the costs associated with basic dental care and prescription eyewear for their children. Dependent children under 19 years of age, in families receiving any level of Medical Services Plan (MSP) premium assistance through the Ministry of Health, are eligible for the Healthy Kids Program.

Variety - The Children's Charity of BC

Variety provides funding to improve the quality of life for children with mental, physical or financial challenges throughout BC.

BC Lions Society

The BC Lions Society supports Easter Seal Houses and provides financial assistance to families for medical costs not covered by their medical plan, summer camps and transportation to treatment, education and recreational facilities.

Children’s Medical Equipment Recycling Loan Service

The Children’s Medical Equipment Recycling Loan Service is a partnership between the Ministry of Children and Family Development and the Canadian Red Cross.

Communication Assistance for Youth and Adults

Communication Assistance for Youth and Adults (CAYA) is a Provincial Resource Program that supports adults aged 19 years and older who require an augmentative/alternative communication (AAC) system due to a severe communication disability, i.e. speech that is not functional for daily communication.

CanAssist

CanAssist is an organization at the University of Victoria that is dedicated both to helping people with disabilities improve their quality of life and to increasing awareness of disability issues.

Have more questions?  You can also look at our Frequently Asked Questions (FAQ) – Families.