Understanding the terminology
Disability services terminology can be a bit confusing at first. Here’s a quick guide to some of the terms you’ll come across most often.
Therapies – or interventions – are the programs or sessions aimed at promoting your child’s development.
Services – or service providers – are the people and organisations that offer these therapies, as well as other services and supports for your child and family. A service might provide one therapy or several types.
The people in the services are generally professionals with qualifications in areas such as social work, disability, community development, psychology, education, speech pathology, audiology, orthoptics, physiotherapy or occupational therapy. They should also be experts in child development.
The organisations that employ these professionals offer a wide range of intervention, therapy and support services and programs. These organisations fall into the following categories:
- local, state and federal government services and programs, which will usually be provided free of charge
- not-for-profit services and programs, which are mostly funded by government and might be free or partly subsidised
- private services and programs, which you have to pay for in full. You might be able to claim some fees through the Better Start for Children with a Disability initiative or your health fund.
What service providers do
Different service providers take different approaches. But almost all services and programs fall into one or more of the following categories.
These providers focus on treating the key medical aspects of your child’s disability and managing any medication he uses. Examples are your GP and paediatrician, or medical specialists such as a cardiologist (heart specialist), neurologist or orthopaedic surgeon.
These providers focus on teaching your child new behaviour and skills by using specialised, structured techniques. In this group, you might come across counsellors and psychologists.
These professionals understand developmental stages and set up learning opportunities for your child at the right time. They can also help your child learn to form positive, meaningful relationships with other people, focusing on teaching social and communication skills. Psychologists are an example of this group.
These professionals provide a specific therapy that targets your child’s individual difficulties. For example, if your child has difficulty with speech or communication, you might see a speech therapist. Other professionals you might come across include physiotherapists and occupational therapists.
These providers focus on skills development and learning in a playroom, classroom or similar teaching environment. Examples are special education teachers, education support staff and educational psychologists.
Professionals such as family counsellors focus on the emotional health of all members of your family. An early childhood intervention specialist might work with you to develop an individual family service plan to help your child and your family develop new skills and find the support you need.
Professionals working in this area might offer a broad range of non-traditional treatments, such as acupuncture or homeopathy.
Professionals such as speech therapists and psychologists can work together using elements of behavioural and developmental approaches.
This includes a range of interventions that sit outside the categories listed above – for example, music therapy and art therapy.
Universal and specialist services
You will also hear the terms universal and specialist being used.
Universal services are available to all families. Examples include child care and recreation activities. Specialist services are specifically designed for children with disability. Examples include respite care and therapy services.
Your decision about services and programs will depend on many things including cost, the options available in your area and your child’s particular needs. Many families find that organising services that are right for them takes a lot of work.
Most families use a combination of universal and specialist services from government and non-government service providers. You might need to think creatively to put together the combination of services and supports that’s right for your family.
At first, you might feel overwhelmed by all the information about services and not know where to start. Parents have said that it seems like a maze, or a complicated road map.
You might find there are particular steps you need to take to use the services you’ve chosen. For example, for some services you need a referral and/or diagnosis. For others, you don’t. You can get funding or rebates for some services, but not for others. How do you know, and where do you start?
Some good places to start are:
- your local council
- early intervention service providers
- disability-specific organisations
MyTime groups – organised groups for parents, grandparents and carers of children with disability
Most services and programs have a list of guidelines for letting people into the service. Sometimes these are easy to understand, but sometimes it might not be clear whether your child or family can get the service. If you’re not sure, ask the service provider for more information.
Our Disability Services Pathfinder
can help you find the path to the services that are right for your child. It can also help you find out as much as you can about service providers before you contact them to have more detailed discussions.
Getting answers, getting organised
When it comes to getting services for their child with disability, parents have found they need two important skills – asking the right questions and organising their information.
Questions and answers
When you start exploring services for your child, it helps to ask as many questions as you can:
- Let the questions pour out – there’s no question that’s not worth asking.
- Ask how the service can help you, what you’re eligible for and when you can expect to get the help your child needs.
- Write down questions as you think of them. Otherwise the important ones might slip away.
- If you feel that your question hasn’t been answered, ask again or ask another professional. Sometimes a different perspective can give you the information you wanted.
Information overload can easily happen, so it’s important to start organising your information as soon as possible. You’ll have information about your child, and you’ll probably also collect a lot of information about the disability and service providers.
- You’ll need to keep some information handy for future reference – assessment reports, school or program reports, application forms and details of appointments. A folder of some type is the most useful way to keep this information organised.
- You might also want to keep lists of terms, words or acronyms, websites and books that you’ve found useful. This type of information can be stored in a notebook or computer file.
- You can store printed information in many ways – computer files, written journals or diaries, desktop-type files, shoeboxes, bottom drawers. It doesn’t really matter, but deciding on an approach early will save you time and confusion later.
- When it comes to deciding what information to keep, be ruthless – you don’t want to build a whole library. Try to keep the things relevant to you and your situation.
What other parents say
Parents of children with disability who have already been on the journey through disability services have found there are some things that really help:
- There are many approaches that, when combined, might help your child and family. Spend time finding what’s right for your child and family.
- Be prepared to change things along the way, as your child grows and develops and your preferences and service opportunities change.
- Keep trying and bounce back. Don’t let setbacks get you down. Talking with family and friends or others in a similar situation can be helpful.
- Taking things a year at a time can help you stay focused and relaxed when making decisions about the next stage in your child’s treatment.
- Some decisions will be just right – others might need to be changed. This is OK. While you’re discovering more about the disability, your child is changing and learning new skills too.
State and territory government disability services
The departments listed below fund and coordinate disability services in Australian states and territories. They can be a good place to start.
Australian Capital Territory