title: Neither seen nor heard: children and homecare policy in Canada.
abstract: Changes in public policy have led to increasing numbers of children with disabilities and complex medical needs being cared for in the homes of Canadians. Little work, however, has explored the ethical implications of these policies. This paper focuses on some of the shortcomings of current policy and describes a developing method for policy analysis with an explicit focus on ethics that could be adopted in other nations. Three forms of analyses - descriptive, conceptual and normative - conducted on Canadian homecare policy documents describe various dimensions of Canadian homecare policy. The descriptive analysis demonstrated that the jurisdiction of homecare services is dispersed across numerous programs and ministries with no single structure for policy implementation and accountability. The needs of children and youth are rarely mentioned in home healthcare policies, but instead are addressed under broader social policies that are focused upon children and family. The conceptual analysis revealed four over-arching themes that represent the predominant elements of a value-structure that underlie homecare policy. They include: (1) home and community care as ideal; (2) the importance of independence and self-care of citizens; (3) family as primary care provider; and (4) citizenship as entitlement to rights and justice. Overall, these themes tend to reflect a neoliberal ideology that shifts the responsibility of care from the state to the individual and his/her family. A normative framework based on critical healthcare ethics is used in the paper to make recommendations to redress the current imbalance between state and family support. For example, including homecare services within the Canada Health Act (CHA) or the development of separate legislation consistent with the principles of the CHA would make it possible to ensure that the principles of universality, accessibility, portability and public administration, as opposed to principles that reinforce competitive individualism, direct the provision of homecare services in Canada.
authors.affiliation: University of Toronto, 155 College Street, Toronto, Ont., Canada M5T 1P8. elizabeth.peter@utoronto.ca
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Peter
authors.forename: Karen
authors.initials: K
authors.lastname: Spalding
authors.forename: Nuala
authors.initials: N
authors.lastname: Kenny
authors.forename: Patricia
authors.initials: P
authors.lastname: Conrad
authors.forename: Patricia
authors.initials: P
authors.lastname: McKeever
authors.forename: Amy
authors.initials: A
authors.lastname: Macfarlane
mesh_terms: D002170:Canada; D017028:Caregivers; D002648:Child; D003153:Community Health Services / Q000458:organization & administration; D019988:Children with Disabilities; D005190:Family; D006291:Health Policy; D006303:Health Services, Indigenous / Q000458:organization & administration; D006699:Home Care Services / Q000941:ethics / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D006801:Humans; D009313:National Health Programs / Q000941:ethics / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D026684:Personal Autonomy