Honouring Jordan’s Principle is a report outlining the obstacles to accessing equitable health and social services for First Nations children with special healthcare needs living in Pinaymootang, Manitoba. Pinaymootang is a First Nations community about 220km north of Winnipeg.

Jordan’s Principle is a child first principle intended to ensure that First Nations children do not experience denials, delays, or disruptions of public services ordinarily available to other children because of jurisdictional disputes between different levels of government or between departments within the same level of government. See here for more information.

In 2015, Pinaymootang First Nation partnered with McGill University to document the experience of Pinaymootang First Nation families and service providers in accessing services for children with special needs. Although the report did not specifically address children with FASD, estimates on the prevalence of FASD in northern Canadian communities range from 7.0 to 189.7 per 1,000 people (pg 28 – prevalence of FASD in Canada). Further, the service needs of children with FASD certainly fall within the scope of the research.

Interviews with families, service providers, and representatives from Indigenous organizations revealed:

• Severe funding disparities for services provided on reserve.
• Funding disparities were due to: ambiguous and vague bureaucratic guidelines and procedures regarding provincial vs federal responsibility; unequal funding between provincial and federal programs; and the mere distance Pinaymootang First Nation is from a service hub.
• 3 main areas where First Nations children with special needs experience service disparities compared to Manitoba children living off reserve: (1) access to allied health services (occupational therapy, physiotherapy, speech and language therapy, and counselling); (2) reduced access to a range of prescription medications and assistive devices; and (3) some limitations in primary and specialized medical services because of shortages of qualified personnel and rurality.
• Combined, these disparities resulted in denial, delays, and disruptions of services ordinarily available to other children in Manitoba. Children with special healthcare needs living in Pinaymootang did not receive the services they required to properly manage their medical and developmental conditions, improve their quality of life, or reach their maximum potential.
• The lack of support services placed emotional and financial strain on the families and there were very limited support services for caregivers who felt overwhelmed, isolated, and frustrated. In fact, it was through the research project that families in very similar situations first learned of each other and the healthcare facility instituted bi-weekly family support meetings.
• Families were faced with 3 scenarios to meet the needs of their children with complex healthcare needs: (1) stay where they were without access to services; (2) relocate to the city and move away from their support networks; or (3) transfer custody of their children to Child and Family Services.
• The school and healthcare centre work hard to collaborate with other organizations and apply for grants in order to provide services to its community members. Many of their programs are delivered outside of core funding without certainty of continued funding, which hinders long-term strategies to address community needs.

Report recommendations:

1. All future decisions on the implementation of Jordan’s Principle on reserve should be made in ongoing consultation with First Nations.

2. All programs aimed at eliminating service disparities should aim to be culturally appropriate and sustainable.

3. Known and documented disparities in the services available to on reserve First Nations children and those ordinarily available to other children should be immediately and systematically remedied.

4. Budget allocations for on reserve services should be based on actual community needs, as determined by First Nations governments and service providers.

5. Funds to support the identification of community needs, and the development and implementation of programs to address those needs, should be allocated as core funding (not be conditional or grant-based).

6. Funding and other resources should be allocated to support collaborations across First Nations communities. These collaborations will facilitate the sharing of resources and the training and hiring of local First Nations staff in the Interlake region.

7. Investments in capacity building need to be made immediately. These investments should support both short-term (e.g., additional training on speech and language basics for case workers already working in communities) and long-term (e.g., funding the training of local First Nations workers in the allied health professions) capacity development.

8. Mechanisms should be put in place to improve communication and collaboration between the three levels of government (federal, provincial, and First Nations), as well as among departments within the same level of government.

9. Policy and services must be designed and implemented to address the needs of youth with disabilities and / or special healthcare needs as they transition into adulthood.

Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences.