Children with disability or chronic illness want, and deserve, to live active, fulfilling lives and to be involved in regular childhood activities. If you are caring for a child with a disability or chronic illness, it is important to remember the child is, before anything else, a child. Their condition will affect their life, but it does not tell you everything about who they are as a person. The child has the same rights to participation, opportunities, development and independence in everyday life as everyone in our society.
The child's condition may be cognitive, developmental, intellectual, physical, sensory or mental health related, or some combination of these, and can substantially affect their life activities. The child may have been born with the condition or it may have occurred suddenly through an accident or illness. It may also be episodic, temporary or permanent.
Depending on the type of condition and the child’s individual needs, the child in your care may develop at a different rate than other children. They may need help or take longer to do some things, and may need extra support to learn new skills. They may also need extra check-ups with relevant health professionals. As their carer, this may feel new and overwhelming, but there are people and services that can help you and help the child reach their full potential.
The child's initial health and wellbeing check, therapeutic assessment and existing medical history will help identify or confirm their condition, and any specific support needs will be incorporated into their Case Plan. If the child’s condition was known before they entered care, they may already have supports and services in place, and unless there is any significant change to the child’s needs, these will continue.
The child’s Case Plan includes the information you will need to effectively care for them, including for example, their treatments, therapies and medications. It will also outline when and where any health appointments will take place. Part of your role as their carer will be to go to these appointments with the child and ensure any advice given is followed and future appointments made. As the person providing day-to-day care to the child, you will develop important insights, skills and knowledge about the child’s strengths and needs, including their condition-related needs. Your insight will be incredibly important to share with health professionals working with the child, your case manager and your Care Team.
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