In a life threatening emergency dial Triple Zero (000)

In a life threatening emergency dial Triple Zero (000)
ACT Public Hospitals

Canberra Hospital

5124 0000


Calvary Hospital

6201 6111

Mental Health

Call Mental Health Triage on

1800 629 354

(free call except from mobiles or public phones) or

6205 1065

Poisons Hotline

For a poison emergency in Australia call

131126

Drug and Alcohol Help Line

The Drug and Alcohol Help Line is available 24-hours, 7 days a week on

5124 9977

Health Protection Service

For after hours urgent public health matters including environmental health, radiation safety, food poisoning and communicable disease management phone:

(02) 6205 1700

healthdirect

24 hour health advice

1800 022 222

ACT State Emergency Service

Emergency help
during flood or storms

132 500


Caring for a child with a disability or chronic illness

In this section: Learn about caring for a child with a disability or chronic illness, including financial assistance, the importance of looking after yourself and what to do if you have concerns about the child in your care.

Overview

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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Learning about the child's condition

If you want to understand more about the child’s disability or chronic illness, speak to your case manager and the professionals involved in the child’s life. Do not be afraid to ask questions or to ask for more information – this will only help you to be the best carer you can be for the child.

Here are some questions you may want to ask:

  • What are the symptoms of the condition – what should I expect?
  • Will any medications be involved?
  • What are the treatment and therapy options?
  • Where will treatment or therapy take place?
  • Will the child’s symptoms and condition change over time?
  • What aspects of lifestyle – like sleep, diet or exercise – might help the child?
  • Will the child need to see other health professionals such as medical specialists, physiotherapists, speech and language therapists, occupational therapists, psychologists or social workers?
  • What other services and support are available?
  • Are there any changes I should make to my routine or home to best care for the child?
  • Is there anything I can do to help the child with their education?
  • How can I support the child?

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Financial assistance

Caring for a child with a disability or chronic illness may bring additional responsibilities for you as their carer. As such, you may be eligible for financial assistance from the Australian Government to help meet associated costs.

In addition, the child you are caring for may also be eligible for support payments or have a National Disability Insurance Scheme (NDIS) plan, or be eligible for one.

For details about the financial support available to you and the child in your care, see ‘Finance matters – Children with additional needs or disability’.

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Concerned about the child in your care?

If you have concerns about the development of the child in your care, or if their school or childcare have raised concerns, talk to your case manager about these. They will be able to determine what type of assessment would be best to confirm your concerns and what should happen next. The type of assessment is likely to be different depending on the concerns raised.

The Child Development Se­rvice can also assist if the child you are caring for is six years old or younger. This service is provided by the ACT Government and offers assessment, referral, information and linkages where concerns relate to child development. Physiotherapy and speech pathology drop-in clinics are also available at various locations throughout Canberra. For more information about these and the Child Development Service, contact them at:

You can also speak to staff at any Child and Family Centre across Canberra about any general developmental worries you may have – this is a free service. The Child and Family Centres are a part of the ACT Government’s Community Services Directorate and are open weekdays from 9.00am to 5.00pm. You can contact them at:

  • Gungahlin – 51 Ernest Cavanagh Street, Gungahlin. P: 6207 0120
  • Tuggeranong – 159 Anketell Street, Greenway. P: 6207 8228
  • West Belconnen – 6 Luke Street, Holt. P: 6205 2904

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Looking after yourself

Caring for a child with a disability or a chronic illness can bring additional stress, especially if the child has serious emotional, behavioural or medical problems. Developing a routine and planning your time can help you balance your carer role with other aspects of your life.

Many carers also benefit from connecting with other carers in similar situations, as well as counselling. Support services are available through Carers ACT who offer free counselling to carers of children with disabilities or chronic illnesses. You can contact them at:

Carers ACT

Carers Australia

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