Jordan’s Principle and Children With Disabilities and Special Needs: A Resource Guide and Analysis of Canada’s Implementation March 2021 The First Nations Child & Family Caring Society of Canada in partnership with the Wabanaki Council on Disability and Mawita’mk Society CONTENTS Introduction / 3 What services and supports are available under Jordan’s Principle? / 13 History of Jordan’s Principle and commonly asked questions / 4 Timelines and urgent needs / 15 What is Jordan’s Principle? / 4 What if the request is denied? (Appeals) / 16 Jordan’s Principle is a legal rule. What are retroactive requests? / 16 What does this mean? / 7 Compensation / 16 What is the proper definition Infographic: How to access services and supports of Jordan’s Principle? / 8 through Jordan’s Principle / 17 Does Jordan’s Principle have an end date? / 9 Findings on Jordan’s Principle and children Does Jordan’s Principle apply to all with disabilities and special needs / 18 Indigenous children? / 9 The literature needs to “catch up” to the proper Why am I asked not to implementation of Jordan’s Principle / 18 use the acronym “JP”? / 10 Definitions of disability and special needs / 20 How to get help through Jordan’s Principle / 11 What’s missing? Lack of culturally appropriate Who to contact / 11 services and supports for children and their families / 22 Jordan’s Principle call centre / 11 Culture, recreation and a “good life” / 25 Service Coordinators / 11 Early intervention services and accessible Regional office and focal points / 11 education / 26 Eligibility and access / 12 Information and support for caregivers / 29 Community approaches / 31 Jordan’s Principle and Children With Disabilities and Special Needs i Gaps and challenges to accessing supports and services / 33 Group requests / 33 Lack of post-majority services / 34 Capital funding / 36 Canada’s “old mindset”: Renewing requests and problematic funding approaches / 37 Evolving legal and policy context / 39 The need for systemic change / 40 Closing words: “Jordan’s Principle has been transformative” / 42 References / 43 Jordan’s Principle and Children With Disabilities and Special Needs ii INTRODUCTION Jordan’s Principle is a legal rule to ensure First Nations Passamaquoddy, Penobscot, Inuit, and Innu persons children get the services they need when they need with disabilities in the Atlantic region. The information them. The purpose of this resource guide is to provide in this guide is based on the following: families, community members, service providers, and • the legal orders on Jordan’s Principle made by policy makers with information about how Jordan’s the Canadian Human Rights Tribunal; Principle can support First Nations families of children • a review of academic and community-based with disabilities and special needs. This includes literature on First Nations children with providing a history of Jordan’s Principle, from being disabilities and special needs in Canada, with a passed in the House of Commons to becoming a legal focus on articles and reports since the creation rule through the orders of the Canadian Human Rights of Jordan’s Principle in 2005; and Tribunal (CHRT or Tribunal), addressing common questions and also misconceptions about Jordan’s • conversations (four total) with Jordan’s Principle Principle, and exploring past studies and reports about Service Coordinators and others working at the needs of First Nations families of children with the community level about their experiences disabilities to see how these needs might be addressed with Jordan’s Principle and families of children through Jordan’s Principle. with disabilities and special needs, including a meeting with the Atlantic Technical Working This resource was created by the First Nations Child & Group for Jordan’s Principle. Family Caring Society of Canada (the Caring Society) at the request of the Wabanaki Council on Disability. More information about Jordan’s Principle is available The Wabanaki Council on Disability advances the at jordansprinciple.ca. economic, social and cultural, spiritual, civil, and political rights of 15,000 Mi’kmaq, Wolastoqey, Jordan’s Principle and Children With Disabilities and Special Needs 3 HISTORY OF JORDAN’S PRINCIPLE AND COMMONLY ASKED QUESTIONS What is Jordan’s Principle? Jordan’s Principle is a legal rule named in memory of Jordan River Anderson, a Cree child from Norway House Cree Nation in Manitoba. Jordan was born in 1999 with complex medical needs and spent the first two years of his life in the hospital in Winnipeg. At two years old, Jordan’s medical team determined that it was safe for him leave the hospital and move into a family home, providing that the necessary medical equipment and supports were in place. Tragically, Jordan never left the hospital. The government of Canada refused to pay for Jordan’s in-home supports, arguing that health care was a provincial responsibility. Jordan River Anderson The province of Manitoba also refused to pay, saying that services for First Nations was the responsibility of the federal government. The expenses at issue Jordan’s Principle and Children With Disabilities and Special Needs 4 ranged from improvements to make the home more Jordan’s family knew that there were many other accessible, to small items like a $30 shower head. Had children being denied services as he was, and gifted Jordan not been First Nations, he would have been his name to the creation of child-first principle to released from the hospital immediately, with expenses resolving jurisdictional disputes stopping First Nations paid, no questions asked (Obomsawin, 2019). children from accessing government services. On Jordan spent the next two years in the hospital for no December 12, 2007, the House of Commons voted reason other than government bureaucracy. He died unanimously to adopt Jordan’s Principle to address the in hospital in 2005 at the age of 5 years old, without needs of First Nations children. Jordan’s father Ernest ever having spent a day in a family home. Anderson and sister Jerlene Anderson were present for the vote, as well as children and families from Jordan’s death sparked a movement to ensure that the community of Norway House Cree Nation, the no other child was treated as Jordan had been. The Chief of Norway House, and the Grand Chief of the discrimination Jordan experienced was, tragically, Assembly of Manitoba Chiefs (Chambers & Burnett, not uncommon. In Jordan’s community of Norway 2007; Obomsawin, 2019). House Cree Nation alone, there were 37 children with “severe disabilities” needing speech therapy or Unfortunately, the federal government did not physiotherapy that governments were refusing to implement Jordan’s Principle as the family intended. In pay for (see Chambers & Burnett, 2007). A national the years following the adoption of Jordan’s Principle sample of 12 First Nations child and family service by the House of Commons, First Nations children were agencies found a total of 393 jurisdictional disputes, still not able to receive help through Jordan’s Principle disagreements between levels of government (see for example, Obomsawin, 2019). In fact, the (provincial or federal) or between government government’s implementation of Jordan’s Principle was departments, involving services for children in the past so narrow and restricted that is questionable whether year alone (Loxley et al., 2005). Jordan himself would have qualified. From 2007 to 2016, the federal government’s implementation of Jordan’s Principle and Children With Disabilities and Special Needs 5 Jordan’s Principle was restricted to children living on Among the most courageous leaders for Jordan’s reserve with multiple, professionally assessed disabilities Principle were Maurina Beadle, her son Jeremy, and and multiple service providers (Sangster et al., 2019). their community of Pictou Landing First Nation in Canada’s failure to implement Jordan’s Principle in Nova Scotia. Jeremy was born with multiple disabilities the spirit it was intended led the First Nations Child and required full-time care, which Maurina provided & Family Caring Society (the Caring Society) and the lovingly from birth, until a stroke in 2010 made it Assembly of First Nations (AFN) to include Jordan’s impossible for her to do so without help (Chambers Principle in a human rights complaint they filed against & Burnett, 2007). Pictou Landing provided the in- Canada in 2007. The complaint alleged that Canada home care that Jeremy needed and asked the federal was racially discriminating against First Nations government to reimburse the costs of his care to children by underfunding child welfare on reserve and the level he would have received from the provincial by failing to implement Jordan’s Principle in a manner government if he lived off reserve (Pictou Landing consistent with the House of Commons motion. Health Centre, 2013). Canada refused Pictou Landing’s request. Rather, the solution proposed by the federal Canada tried on several occasions to have the government was to place Jeremy in an institution far complaint dismissed on legal technicalities, which from his family and community, the cost of which delayed the hearings until 2013. During that time, would actually exceed the cost of in-home care (Pictou Jordan’s family, community, and First Nations leaders Landing Health Centre, 2013). and educators worked to raise awareness about the proper implementation of Jordan’s Principle. Thousands Maurina and Pictou Landing challenged Canada’s of people of all ages and diversities signed