I'm worried my child might have a delay or disability

Finding out for sure: getting a diagnosis

The picture below shows the steps you might go through on the path to ‘getting a diagnosis’ of developmental delay or disability for your child. There can be several ways to get to the stage of formal diagnosis.

  • Hover over and click any step on the diagram below to read more about that step.
  • Click the map of Australia below to find contacts for each step in your region.

You and your child

You know your child best. What you know about your child and how you describe your child are essential parts of working out exactly what illness condition or developmental problem your child has. So it helps to understand what diagnosis involves and to be ready to share information with the professionals working with your child.

Although children often get diagnosed in the early years, diagnosis can happen at any age. For some children, it’s possible to say exactly what condition or disability (or multiple disabilities) they have. For others, it’s a gradual process that takes many months or years. And for others, it might not be possible to say exactly what condition a child has, or the child might need further tests and observations in the future.

GP or child health nurse

It’s always a good idea to visit your GP or child health nurse if you’re worried about your child’s health or development. Your GP can give you a referral to see a child specialist (for example, a child psychiatrist or paediatrician) or an assessment team. A referral is a special letter that says why your child needs to see the child specialist or assessment team. The specialist or team can work out whether your child has a disability and what help your child needs. Sometimes you can ‘self-refer’ to child specialists, but mostly you need to see a GP first.

Whether you’re referred to a single specialist or to a multidisciplinary diagnostic assessment team will often depend on what’s available in your region and on your child’s needs. You might also need to choose between a public and private assessment:

  • Private assessment: you’ll have to pay for this, but you might be able to get Medicare rebates and private health fund rebates for it. You’ll need your GP’s referral to claim Medicare rebates.
  • Public health service assessment: for this kind of assessment, you go through your local hospital or health service. It’s free, but you might have to wait a while.

Child specialist

  • A paediatrician is a medical doctor who has done extra training in the medical care of children.
  • A child psychiatrist is a medical doctor who has done at least five years of extra training (including two years of training specific to children) in looking after mental illness and emotional disturbance in children, using a medical approach.
  • A clinical child psychologist is a university-trained health professional who specialises in looking after mental illness and psychological problems in children.
  • A speech pathologist is a university-trained health professional who works with people who have speech, communication and swallowing disorders.
  • An occupational therapist is a university-trained health professional who helps people get over challenges caused by injury or illness, psychological or emotional problems, developmental delay, intellectual disability or physical disability. In their work with children, they particularly help children with fine motor problems and eye-hand coordination problems.
  • A physiotherapist is a university-trained health professional who works with adults and children who have movement problems, cardio-respiratory and neurological disorders, and pain caused by joint, muscle and nerve ailments. Children with developmental disability, particularly physical disability, can get a lot out of physiotherapy.

These specialists can help to say exactly what disability your child has by watching your child and getting information from you and other people who know your child.

Diagnostic assessment

Diagnostic assessment is when a qualified specialist or a team of specialists check your child’s abilities and behaviour against a set of guidelines. Then they give you a written report of exactly what condition they think your child has. Your GP, child health nurse, child specialist or state or territory disability service should be able to tell you about local options.
  • Multidisciplinary assessment: a multidisciplinary team does this kind of assessment. The team usually has a doctor (paediatrician or child psychiatrist), a psychologist and a speech pathologist. The team gets information from you and from testing your child. You can usually talk with the team straight away after the assessment. The team will send a full report to you later on. You can get multidisciplinary assessments in the public health system and also from teams working on a private basis.
  • Developmental assessment: your child might have this kind of assessment when it’s not clear what is causing your child’s developmental delay, when there are no specialists to carry out a multidisciplinary assessment, or as part of a multidisciplinary assessment. A paediatrician can do a developmental assessment, and so can your local hospital or health service.

Diagnosis

This is an official letter or set of assessment findings, which clearly says what condition or disability your child has. A paediatrician, child psychiatrist, clinical psychologist or the head of an approved multidisciplinary assessment team might write your child’s diagnosis. Ideally, the diagnosis will include test results. It will give you a clear idea of how your child is learning and developing. When your child starts early intervention, it can also help you compare your child’s development before and after the intervention. You should keep records and documents about the diagnosis and other tests. You’ll need them to show that your child can get programs and funding. In fact, it’s a good idea to keep notes and records of all your meetings, phone calls, letters and emails in the disability service system.

While you're waiting: starting intervention

If you’re on a waiting list for diagnostic assessment and your child hasn’t yet started any therapies, it’s a good idea to get going on some as soon as possible.

  • Hover over and click any step on the diagram below to read more about that step.
  • Click the map of Australia below to find contacts for each step in your region.

 

Looking after yourself

Lots of parents feel frustrated, worried or upset when they’re waiting to find out exactly what disability or developmental delay their child has. This is a time when families tend to focus solely on the child. But you also need to look after yourself and get information about help and support for the whole family. For some families, it’s a good time to look into support groups.

Playgroups and community activities

All families can get services such as playgroups, child care and recreation activities. These are ‘universal’ or ‘community’ services. Families of children with disability can get these services in the same way as other families. If you can, stay connected to your local community and continue with ‘typical’ family life.

Start intervention

You can find the therapists and interventions listed in this pathway through community health centres, hospitals or early intervention services. Your GP, paediatrician or other parents can also tell you about private therapists. Early intervention is often a combination of specialist support and therapies. You might end up using some government-funded services as well as community service organisations and private therapists.

Generic early intervention

Generic early intervention means intervention that isn’t specific to any one disability. This kind of intervention provides support and therapies for young children who have developmental delay or disability, as well as for their families. Try to find your local early intervention providers as soon as you can, and talk about your child’s needs with them. It can also help to get advice from professionals who know your child – for example, your GP or child health nurse. They should be able to suggest what you can do, where you can start, and how you can find the services you need.

Speech and language therapy

Speech therapists work on all areas of your child’s communication – getting a message across, understanding what others are communicating, and handling the social side of communicating. Speech therapy can also help your child get better at eating and drinking if necessary. When you’re deciding where and how to get started, it can help to get advice from professionals who know your child. Try your GP or child health nurse for information about speech therapists in your area.

Occupational therapy

Occupational therapists (OTs) can work with your child to help your child get stronger and better at both little and big muscle and body movements. This can help your child get better at self-care and physical play. OTs help children overcome challenges caused by injury or illness, psychological or emotional problems, developmental delay, intellectual disability or physical disability. They particularly help children with fine motor and eye-hand coordination problems. When you’re deciding where and how to get started, it can help to get advice from professionals who know your child. Try your GP or child health nurse for information about OTs in your area.

Physiotherapy

Physiotherapists work on movement problems, cardio-respiratory and neurological disorders, and pain caused by joint, muscle and nerve problems. Children with developmental disability, particularly physical disability, can get a lot out of physiotherapy. Physiotherapy can help children with physical impairments, diabetes and arthritis, as well children getting better after an injury or stroke. Try your GP or child health nurse for information about physiotherapists in your area.

Learn more about disability and intervention

There are lots of ways you can learn more about disability and intervention. You can read the articles on the RCN website, for example. Also, each state and territory has disability groups who have helpful information they can share with you. You could also look at intervention and therapy options for your child, as well as the financial supports you can get. Learning to navigate the services and support system and the funding maze takes time. It’s worthwhile getting a feel for these systems while you’re waiting.

You and your family: help and support

Families often say that the time before their child gets a formal diagnosis of disability is the hardest time of all. If you’re finding it stressful and overwhelming at times, you’re not alone. Friendships with other families who have a child with disability can be a huge help. Learning where to get good-quality information and support can also help you feel better and more on top of things.

  • Hover over and click any step on the diagram below to read more about that step.
  • Click the map of Australia below to find contacts for each step in your region.

 

State disability service

In some states and territories you can get support for your child with disability from the state disability service. In others an early childhood department looks after young children, and the disability service supports older children. Either way these departments should be able to help you work out the supports that you and your family can get.

Disability-specific groups

Joining a disability-specific group is one way to connect with other families, share information and build your support network. Many local and regional disability-specific groups get together in person. You can also look into online groups and forums as a way of connecting with families who have children with the same disability as your child.

Books and websites

Checking out books and websites can be a good way to learn more about disability. There are lots of books out there on different kinds of developmental delays and disabilities. They range from medical textbooks to the personal stories of people with disability. There are also many websites that can give you useful advice and support.

Respite and carer support

Respite just means having a break from your child with disability. You can have respite care in your home, or your child might be able to go to a respite care centre. Although respite might not appeal to you at first, many children with disability really do enjoy it. Your state disability service or carers association might be able to provide respite help and advice. Also, all states and territories have Commonwealth Respite and Carelink Centres. They can tell you about local options and do some respite themselves. You can search the Carelink database for respite in your area.

The National Carer Counselling Program lets you talk to a counsellor for short periods, usually six sessions, at no cost. This program is run by your state Commonwealth Respite Centre.

Stress, anxiety and depression support

If you’re feeling stressed or depressed, it’s a very good idea to see your GP. Your GP can keep an eye on how you’re going, tell you about medical treatment for stress and depression, and send you to other professionals who can help you. Your GP can also talk with you about the Better Access initiative. This lets you get Medicare rebates for visits to a psychologist. Your GP might also be able to tell you about
other supports and services in your local area.

Family support and forums

Many families who have a child with disability get a lot out of family support groups. These groups can give you a chance to meet and form friendships with others in the same situation as you. Groups can be linked to family service agencies or work on their own. They can be formal or informal. Your state disability service or disability-specific organisation will probably have details of groups in your area. Online forums and groups can also give you the chance to connect and share stories, advice and support.

Disability support organisations

Disability support organisations are usually regional or state based. They might be able to help you with information and support you as you speak up for your child. They also lobby governments for better services and options for families and carers, as well as for people with disability.

Family and community services

Caring for a child with disability can be challenging for many families. But there’s a large network of services that can help you with parenting, running your family, coping with stress and so on. For example, the Home and Community Care Program (HACC) is a joint Commonwealth, state and territory program that organises community care services for old people who can’t care for themselves very well, younger people with disability and their carers. Your local GP or municipal council should be able to give you information about this and other programs in your area.

Your relationship with your partner

Having a child with disability almost always changes your relationship. Sometimes couples need time to get used to their changed circumstances. They might need extra support too. Relationships Australia is a national organisation that offers relationship support around the country. There are also many private family and relationship counsellors and therapists you can talk to. Your child health nurse or GP should be able to point you towards local professionals. You can also get respite care for your child, which might be good for giving you and your partner some time to spend together.

Your other children

Having a brother or sister with disability can be rewarding and challenging for children. Sometimes they might need extra attention. It might also help them to talk to counsellors, psychologists or other children who also have a brother or sister with disability. Your GP or child health nurse might be able to suggest a counsellor or psychologist and let you know about funding for these services. Your Commonwealth Respite Centre and state-based disability association might be able to help with support or let you know about sibling programs. Siblings Australia is a national organisation that aims to make life easier and better for siblings of children with disability and chronic illness.

  • Last updated or reviewed 18-01-2013