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Parents of chronically ill children should be assessed when health or child protection services raise concerns about their ability to raise children. A committee of the state government has recommended dying after the premature death of a girl with chronic health who has been informed several times about child protection.

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The South Australian Childhood Death and Serious Injury Review Committee has also recommended that health services provide cheaper care for children with lifelong disabilities or chronic illnesses.

This is followed by the premature death of a girl with chronic illness in South Australia who was notified several times in the years before her death.

According to the committee’s 2019-20 annual report presented in Parliament, she died “of the consequences of medical neglect” after she was diagnosed early in life with an unspecified condition that the committee considered life-shortening, but usually fatal Middle of life.

“Her life story exemplifies what can happen when a service loses focus on a person who is at the heart of its business,” the report said.

The committee wrote that the girl, whose age was not given, was repeatedly hospitalized and ended up spending almost 20 percent of her life there.

It was written that she also experienced “pedagogical neglect” as she was absent from school more than two-thirds of every school year for the last five years of her life.

“The family’s circumstances included drug use, domestic violence and multiple household moves, all of which limited their ability to meet their complex daily care needs,” the report said.

“Community-based support services that were actively initiated by SA Health and the Department for Child Protection (DCP) were often not used by the family.

“Multiple notifications have been sent to DCP, but often no action has been taken.”

The committee wrote that some service providers had made “significant efforts” to stay in touch with the family for the benefit of the girl. However, records showed that her health only improved when she was hospitalized for long periods of time.

“Towards the end of her life, palliative care services sought to recognize her voice and views and enabled her to actively participate in decisions about her life,” she wrote.

The date of the girl’s death was not given.

The report made several recommendations to prevent further incidents of medical neglect, including adopting “parental capacity assessments” when health or child protection services have “significant concerns” about a family’s ability to manage a child’s complex care needs.

It has also been suggested that child protection, education and health services work together to provide the “most affordable care” throughout a child’s life, especially if a child has a lifelong disability or chronic health conditions.

The committee wrote that it would discuss the recommendations with SA Health and the child protection, human services and education departments.

InDaily contacted the child protection department for comment.

Child and adolescent deaths from illness or illness consistently account for more than half of the total number of child deaths in South Australia.

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According to Helen Connolly, the SA’s commissioner for children and adolescents, between 16 and 20 percent of children nationwide will have chronic illnesses at some point in their childhood, but little is known about the effects on local children.

In her annual report, also submitted to Parliament, Connolly described the lack of knowledge about the effects of chronic diseases on all aspects of a child’s life as a “system failure”.

“The reality is that we do not know the real extent of the problem. This presents a challenge to the delivery of up-to-date services as well as effective longer term planning at the local health network level,” wrote Connolly.

“To give children and adolescents with chronic illnesses the care, treatment and support they need – and are entitled to – we first need to know the nature and extent of the problem.”

Connolly said she will study the effects of chronic illnesses on children and adolescents in South Australia this fiscal year.

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