September 14, 2022
Experts Raise Concerns with MCFD’s Sweeping Funding and Framework Shifts for Children and Youth with Disabilities; Instead, Need Co-Developed, Evidence Based Model
(xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish) and səlilwətaɬ (Tsleil-Waututh)/Vancouver, B.C.) First Nations leaders, the Representative for Children and Youth, advocacy organizations, experts, and parents spoke to media today raising concerns with Premier Horgan and the Government of British Columbia’s rollout of “family connections centres” for children and youth with disabilities, and instead called on the Province to co-develop a transformed and evidence-based framework for funding and services.
The experts share the perspective that funding and services for children with disabilities in British Columbia must be transformed, and do not want the Province to stop working toward this. The existing system is not adequate or sufficient. Many children do not qualify for necessary funding and supportive services because of their diagnosis. This is not right. All children with disabilities must have their needs met, through a system that is evidence-based, respectful of individual dignity and needs, and upholds human rights.
In October 2021, the Province announced a plan to end individualized autism funding and certain other support programs for children with disabilities, and establish a system of centralized “family connections centres.” The development process and details of this plan are flawed and incomplete and do not fully reflect the best practice evidence regarding support for children with disabilities.
The following concerns have been raised since the announcement:
- The “family connections centres” model was developed without meaningful or adequate engagement with Indigenous peoples, families, experts, service providers, or advocates. Developing a model and beginning roll out prior to engagement is not acceptable.
- The “family connections centres” model was developed in violation of the United Nations Declaration on the Rights of Indigenous Peoples, which requires consultation and co-operation with, and the free, prior, and informed consent of Indigenous peoples, and that special attention be paid to Indigenous individuals with disabilities.
Basic information and questions about the centres, service levels, and transition for children and families have not been adequately answered by the Ministry of Children and Family Development.
- The Province’s Budget 2022 reveals that there will not be adequate funding supports to meet the numbers of children and youth anticipated to access the “family connections centres,” resulting in reduced services for all children and long waitlists. Related to this are concerns that some children and families will lose access to service providers with whom they have developed vitally important and effective relationships.
- Rollout of the “family connections centres” model has revealed an intention to move away from individualized services to group services, which is not evidence-based or consistent with best practices for children with disabilities.
- We support both an expansion of access to diagnosis while also providing services to children presenting with functional or behavioural disabilities. The “family connections centres” model does not resolve or address the current significant wait times to get a diagnosis. For many children, diagnosis allows for the identification of the intervention, therapies, medications, and services a child needs. Without this, necessary and appropriate interventions may not take place, and the dignity of each child is not respected.
- The “family connections centres” model will result in new access barriers. This includes Indigenous children who, because of intergenerational trauma and the legacy of colonialism, will experience distinct barriers to accessing centralized MCFD controlled and run centres. In addition, many children with complex disabilities will be unable to access or attend services in group settings, new spaces, or outside of their family or community environment.
- Any model developed must uphold the rights of children and youth. This must address human rights violations that children may be experiencing in the current framework through lack of access to services, yet also ensure that there will not be human rights violations created through the “family connections centres,” especially experienced by the most vulnerable and high needs children, as they will receive reduced services that are not capable or designed to address their specific circumstances and needs.
Kukpi7 Judy Wilson, Union of BC Indian Chiefs, Secretary-Treasurer
“By Resolution 2022-24, the UBCIC Chiefs Council has called on the Province to co-develop an approach to transforming services for First Nations children and youth with disabilities while maintaining existing services until a new approach is jointly agreed upon, and to advance the full implementation of Article 22 of UN Declaration for all First Nations persons with disabilities. We all agree that the current system of supports for children and youth with disabilities is broken; however, anything replacing it must be evidence-based and fully costed out.”
Dr. Jennifer Charlesworth, Representative for Children and Youth
“The system currently in place for B.C. children with support needs is not working for many young people and their families, so I am supportive of a new approach by government. However, that approach needs to be co-developed, well thought-out, properly funded and beneficial for everyone who requires supports and services. All children have the right to be supported to live their best lives.”
Tamara Taggart, Down syndrome BC, President
"Individuals with Down syndrome have a right to access health services needed specifically because of their disabilities, per Article 25 of the UNCRPD. At present, people with Down syndrome in BC are not receiving adequate, or in some cases any, services in this regard. Families should have access to supportive services from providers who are knowledgeable about and experienced with Down syndrome as soon as their baby is diagnosed with Down syndrome, with no further assessment or gatekeeping. While there is no doubt that the current support system is failing many families, we are deeply concerned about the bureaucracy of a centralized system, the lack of autonomy of disabled individuals and their families to decide what care is right for them within the proposed framework, and the probable scarcity of specialized support for a relatively rare diagnosis such as Down syndrome within a one-size fits all model."
Dr. Suzanne Lewis, Director, Autism Spectrum Interdisciplinary Research (ASPIRE) Program, Senior Clinician Investigator, BC Children's Hospital Research Institute,
Clinical Professor, Dept. of Medical Genetics, UBC
"Services and supports for children with behavioural complexity and neurodevelopment disorders are universally underfunded, and the impact upon the family are seldom accounted for in budgetary calculations. In 69% of BC families impacted by autism, one parent has had to quit work to care for their child. Decisions on services are being limited by funding availability, irrespective of need, due to a systemic unwillingness to involve, listen to, or act upon the advice of health care providers and parents who are best able to measure and address such needs.
The shift to family connections centres will not address these challenges. This restructuring has been made without consulting the parents or the majority of health care professionals, First Nations, and agencies supporting children. We all want action enabling essential individualized treatments for children with neurodevelopment disorders based on need, and this new model does not achieve that. How is this going to improve the system? How is this restructuring going to encourage Indigenous families to feel safe? How are we going to stop breaking families?"
Nicole Kaler, BC Ed Access, Chair
“Too many children with disabilities in BC are excluded from school and the lack of wrap-around services from MCFD is a contributing factor. This new service model by the government has the opportunity to help address the current inequity in education, but if it isn't inclusive in how it is developed, it will further exacerbate the exclusion of children from their communities. Families have a diversity of needs and an effective service model requires consultation and collaboration. Currently we have inequity in service delivery which we want to see addressed quickly. Therefore we at BCEdAcess amplify the message with UBCIC and all other advocacy and support agencies that we need a process that includes community input so that we get a service plan that gives all children and families the help that they need.”
Regional Chief Terry Teegee, BC Assembly of First Nations
"The British Columbia Government has committed to changing the trajectory of relations with First Nations through concrete and cooperative action. Any current reform in funding and services to First Nations children must be developed in consultation and co-operation with Indigenous peoples. For too long, too many of our children have slipped through the cracks of the broken social and health systems and they do not thrive or prosper. By working together and co-developing flexible supports and services we can ensure every child lives their best lives. We’ve expressed our serious concerns on the proposed approach of the “family connections centres” and we now expect a complete reassessment and openness for new innovations."
Cheryl Casimer, First Nations Summit Political Executive
“While it may be well intentioned, BC’s new unilateral approach is a clear step backward. They have made decisions to streamline government services at the cost of the individual. This simply is not right and is not in the best interests of First Nations children with disabilities. BC must work with Title holders, and through processes that First Nations have mandated regarding our children and youth to build and implement Indigenous services through joint engagement that recognizes and respects First Nations jurisdiction.”
Nancy Walton, Autism Support Network Society, Executive Director
“Individualized funding for necessary Behaviour Intervention allows children with autism to attend school, make friends and reach their full potential as a citizen. The funding has allowed parents to build up the pool of autism expertise in British Columbia, by creating a demand for quality service providers. The elimination of this funding is already affecting the capacity of specialized service providers in BC and creating severe anxiety and worry amongst our parents that established behaviour intervention programs for their children will be taken away or significantly reduced.
BC’s proposed hub model includes non-clinicians making decisions about medically necessary behaviour intervention. Such a system will not have capacity to provide science-based behaviour intervention programs. We must do better for all children.”
Ellena Neel, UBCIC Communications Manager c/o 778-866-0548 or [email protected]
Jeff Rud, ED, Communications and Knowledge Mobilization Office of the Representative for Children and Youth c/o 250-216-4725 or [email protected]