Lack of meaningful engagement, clear correspondence or action plans from the Ministry of Health creates additional barriers for children with complex medical needs.
(September 13, 2022 – New Westminster, B.C.) The week before the beginning of this school year, families with children who need seizure rescue medication at school learned their children’s care plan had been put on hold, and school staff would not be trained to administer seizure medication. In a matter of days, families and the media rallied to bring attention to this issue, and had a dialogue with the Ministry of Health, who acted in partnership with the Ministry of Education and Child Care to provide answers or action plans. This resulted in an announcement Friday, September 9, 2022, that there is a solution for children who need seizure and other rescue medications at school. Many of these students had already missed a week of education, and some will still miss more days while the plans and training are put in place. However, this demonstrated responsiveness and collaboration to provide solutions.
The community organizations collaborating in this statement are now requesting the Ministry of Health take a more proactive approach to the numerous barriers to access support that remains for families whose children receive Nursing Support Services.
BC Complex Kids Society, BCEdAccess, Family Support Institute of BC and Inclusion BC are calling on the Ministry to establish a more meaningful engagement table that centres on the lived experiences of families and a commitment to act more proactively to solve the challenges with Nursing Support Services delegated and direct care.
Delegated and direct care have been suspended for childcare centres which means children are being excluded if they need delegation of nursing tasks to ensure they can attend child care, or if they need a nurse to attend with them. Children already enrolled in childcare centres were asked to leave or denied enrolment due to this suspension of care support.
Children who should receive services under the direct care option, whether at home or in school, continuously find themselves without support because allocated hours of support are not being fulfilled.
“Families have been undersupported for far too long. This shows up as caregiver burnout, sleep deprivation and financial instability as families struggle with care demands when allocated nursing hours go unfulfilled. The inflexible eligibility criteria compound the issues, leaving a care gap as the Ministry of Children and Family Development’s respite program is the only other option,” explains Brenda Lenahan of BC Complex Kids Society. “It is also delivered in a scarcity model with strict criteria and waitlists. We need all ministries engaged with families to build solutions.”
“Families need to know that their children are safe, and there are robust plans in place to ensure the care is there to ensure full participation and inclusion in all aspects of the day,” says Angela Clancy, Executive Director of the Family Support Institute of BC. “Changing policy and practice without engagement and notice violates children’s and families’ rights and eliminates the ability for all kids to have meaningful, inclusive experiences while remaining safe and supported in all settings.”
“We need a rights-based approach and inter-ministerial collaboration to address the barriers families with children with complex medical needs experience. Children’s rights to health, education, and community inclusion are not being fulfilled. We see what is possible where there is will to act. We call on the Ministry of Health to show leadership, engage with families, collaborate with other related ministries, and offer meaningful solutions for the rights and well-being of children with complex medical needs”, said Erika Cedillo, Ph.D. and Director of Public Policy & Programs of Inclusion BC.
About BC Complex Kids Society:
BC Complex Kids is a grassroots, family-led organization that brings families together to support each other, share knowledge and advocate for equitable support for their children with health complexities.
BCEdAccess Society is an organization serving families of students with disabilities and complex learners all over the province of British Columbia. Their parent support group has over 4000 members, and stories shared on private discussion boards daily illustrate the challenges families face in pursuing equitable access to education in B.C. ‘s schools.
About Family Support Institute of BC:
Family Support Institute of BC (FSI) is a provincial not-for-profit society committed to supporting families who have a family member with a disability. FSI exists to support individuals and families to be connected and fully valued in their communities. Also, the organization leads the way in building an inclusive and safe environment by strengthening families, defending rights, and transforming communities into places everyone belongs.
About Inclusion BC:
Inclusion BC is a non-profit provincial federation working with partners to build community and enhance the lives of children, youth, adults with intellectual and developmental disabilities, and their families by creating awareness, inspiring action and advancing rights, responsibilities and social justice.
About Nursing Support Services (NSS):
NSS assists parents and caregivers of children and youth (0-19) with medical complexities to lead active, healthy lives in their communities. This is a program run under the umbrella of BC Children’s Hospital that is responsible for two essential streams of care for children with health complexities – delegated care and direct care.
For media inquiries, please contact:
Brenda Lenahan, BC Complex Kids Society
Tracy Humphreys, BCEdAccess Society
Angela Clancy, Family Support Institute of BC
(604) 540-8374 ext 524
Erika Cedillo, Inclusion BC