A bill of health care rights for children and youth?

For more than 40 years the Canadian government has guaranteed medical care as a right to all Canadian citizens. This promise has not been honored for children and youth, and this needs to be rectified.

The Canada Health Act promises “to protect, promote, and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial barriers.” It does not address the unique requirements, distinct physiology, or varying neurodevelopmental stages of children and youth. Children’s services have been allowed to develop as a patchwork with significant gaps and waiting lists that are especially noticeable in small and remote communities.

Children’s disorders often present not with illness but with delayed or disordered development. “Invisible disabilities” such as fetal alcohol spectrum disorder, autism spectrum disorder and ADHD often present as behavior problems at home or school. They are not readily diagnosed and require a multidisciplinary team for full assessment and management that extends to home, daycare, and school. The earlier these problems are identified and managed, the better the outcomes for children and their families.

For children to achieve healthy adulthood, a safe environment allowing for free play, healthy physical activity, and sound emotional development is essential. The family is central to a child’s security and care. Hospitals, health programs, and communities must therefore be designed to meet the child’s developmental needs and include the family in the care-giving team. Rehabilitation, mental health, daycare, and school-based health services must be included in children and youth’s health care continuum. Reducing lifelong disabilities is essential to achieve a productive and healthy society.

The health care model for children needs to combine mental health and developmental medicine in partnership with community services. Hospital and subspecialty pediatric medicine must be adapted to age and stage. The health system provides access to physicians but fails to provide the full diagnostic and follow-up services that are needed to adequately care for their pediatric patients. Children pay the cost in lost life potential, and families and caregivers burn out as a result of inadequate support. Communities are left to pick up the pieces.

Children and youth need effective diagnostic, assessment, and treatment services available as close to their homes as possible in order to provide for their care and to support their families, daycares, preschools, schools, protection services, and community agencies. Failure to provide adequate developmental and mental health services for children results in greater lifelong disability, adverse health outcomes, increased dysfunctionality in adults, as well as increased costs manifested through lost productivity, broken relationships, and antisocial behavior.

The inequality and discrepancy in health services provided for children and youth is evidenced in the allocation of health care dollars. The 0 to 19-year-old age group represents more than 25% of the population in British Columbia but receives less than 10% of the health care budget. Governments and health authorities should commit to full and effective health services specifically designed to meet the needs of children and youth.

Provincial standards do not properly set out the health needs of children and youth. Parents are not advised of rights and benefits for the health care of their children. Health authorities have little to guide their provision of health care for children and youth other than response to individual crises. Often there is unnecessary conflict when parents and children’s advocates resort to public campaigns and legal action in frustration over the lack of appropriate children’s services. Examples include the campaign to build a modern children’s hospital for the province and other campaigns to provide better child and maternity services throughout the province. Entrenched attitudes and interests in the medical profession are often as great a barrier to change as government. Because there is no commonly agreed entitlement to health benefits for children and youth, decision making often becomes unnecessarily adversarial.

A bill of health care rights for children will bring coherence to planning health services and provide a basis for decision making for government and health authorities. It would specify rights and benefits for health services to children and youth and would guarantee that their biological, developmental, and social needs are met. It would recognize the dependency and vulnerability of children, their right to treatment, and their right to develop without unnecessary disability.

Children are the custodians of our future. They must no longer be left at the back of the line. The UN adopted the Declaration of the Rights of the Child in 1959 and the Convention of the Rights of the Child in 1989. The Convention was ratified by Canada in 1991 and shortly thereafter by BC. It is past time for BC to make a full commitment to the health of children and youth.

—Basil Boulton, MD
Children and Youth Health Committee