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    Use the Disability Reference to read a brief explanation of disability terms as well as definitions of the professionals you may encounter.

     Go to Parent Guide to Therapies

 

My child has been diagnosed with a disability

Helping your child: finding early intervention

Early intervention means therapy, education and family support programs that can help your child’s development. It’s the package of intervention that you put together to help your child learn and develop as well as possible. Children with developmental delays or disability can get many types of early intervention. You’ll find that your child will probably get most from having more than one type of intervention during early childhood.

  • 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. 

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.

Learn more about disability

Try to make sure you know about the disability, and also your child’s individual symptoms. Your next job is to learn about treatment options. This will take time, but it’s time well spent. You and your family will need to decide on the best package of early interventions for your child. You’ll get advice from professionals such as paediatricians. But in the end, it’s your decision and it needs to be right for your child and your family.

MyTime

MyTime is a national program that coordinates local support groups for families of young children with disability or chronic medical conditions. At your local MyTime group, you can socialise and share ideas with other families. Children go to the groups, and a helper works with them, which gives you time to chat. Each group also has a facilitator who supports families, helps them decide what to talk about, and gives them research-based parenting information. Groups have at least four parents and usually meet once a week for a couple of hours. MyTime is funded by the federal government.

Early intervention options

Early intervention, or early childhood intervention, means therapy, education and family support programs that can help your child’s development. You can get early intervention services from government agencies, not-for-profit organisations or private therapists. Some of these providers specialise in disability-specific early intervention. Others help children who have a range of disorders – these are called generic services. Depending on what your child and your family need, early intervention might be a therapist working with your child one on one, a therapist working together with you and your child, or a therapist working in a group session with your child and other children.

Government-funded early intervention provider

The Australian Government will give you funding of up to $12 000 (up to $6000 per financial year) to use on early intervention services. You have to get the services from providers on the Government’s Better Start for Children with Disability Early Intervention Service Provider Panel. You can get this funding if your child is under six and diagnosed with cerebral palsy, Down syndrome, Fragile X syndrome, or moderate or greater vision or hearing impairments, including deafblindness, Prader-Willi syndrome, Williams syndrome, Angelman syndrome, Kabuki syndrome, Smith-Magenis syndrome, CHARGE syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome, or Microcephaly.

The Early Intervention Service Provider Panel is made up of service providers who offer evidence-based, multidisciplinary interventions. When you first look into it, the range of options might seem overwhelming. But your understanding of funded options will grow – and so will your understanding of your child’s unique needs and strengths. You can read more about different types of early intervention in our article on early intervention for disability [link to new article].

Special health services and providers

Special health services and providers are extra therapy services that can help children with developmental delays and disabilities. These services can include speech pathologists, occupational therapists, physiotherapists and psychologists.

  • Public services: most states and territories provide some special health services to children with disability, through state or territory health or disability services departments. The services you get through government departments usually don’t cost you anything. On the downside, there are often long waiting lists for public services, which might also be limited because of high demand. (For example, speech therapy might be provided weekly but only every second school term.) It’s generally worth putting your child’s name on waiting lists – you’ll get to the top at some stage. Meanwhile, you can get special health services privately, using Medicare rebates. If you do this, you’ll need to cover any extra costs.
  • Private services: private special health services can offer therapies from individual providers or multidisciplinary teams. Many health insurance companies offer rebates for several visits to a special health service, as long as you have the appropriate ‘extras cover’. You can also get Medicare rebates for special health services through the Better Start initiative as well as through the Enhanced Primary Care scheme.

Disability-specific early intervention

There are early intervention therapies that provide specialised support for specific disabilities such as autism spectrum disorder, cerebral palsy, developmental delay, hearing impairment and vision impairment. In most states, several services offer disability-specific intervention, including non-government organisations and private providers. Many of these organisations will be on the Early Intervention Service Provider Panel, although some might not be.

Some non-government organisations that offer disability-specific early intervention are part-funded by their state government. Some states give funding packages to families to get therapy for their child from approved providers. Other providers are completely private. This means you’ll always pay the full cost to use them. But you might be able to get rebates on your payment from private health insurance or Medicare.

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 with different kinds of developmental delays, disabilities and disorders. Children with disability often use generic early intervention services at the same time as specific intervention services.

Helping your child: child care and early learning

Spending part of the week in a child care or an early childhood education centre is usually a good idea for young children with disability. The right time to start depends on your family circumstances. Finding the best place for your child might take time, so it’s always good to start looking for child care and education opportunities as soon as you can.

  • 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.

Child care: long day care, family day care, in-home

Your child with developmental delay or disability might already be going to child care – long day care in a child care centre, family day care in a carer’s home, or in-home care. Or you might be thinking about child care so that you can work, or as a way of helping your child learn to communicate and make friends. Your early intervention provider should be able to let you know about local child care as well as preschools, kindergartens and pre-primary options. Your early intervention team and child care workers should work together so they’re all doing what’s best for your child’s learning and development. This should help your child to ‘generalise’ her skills – use and practise skills from the early intervention centre in the wider community.

The Federal Government’s Department of Education, Employment and Workplace Relations (DEEWR) runs the Inclusion Support Subsidy, which provides extra care for children with special needs to help them take part in child care.

MyTime

MyTime is a national program that coordinates local support groups for families of young children with disability or chronic medical conditions. At your local MyTime group, you can socialise and share ideas with other families. Children go to the groups, and a helper works with them, which gives you time to chat. Each group also has a facilitator who supports families, helps them decide what to talk about, and gives them research-based parenting information. Groups have at least four parents or carers and usually meet once a week for a couple of hours. MyTime is funded by the federal government.

Early childhood education

Most children in Australia are funded for at least one year of early childhood education before they start school. Whether this is fully or partly funded, what it’s called, and where it happens is different in each state and territory. Early education is usually administered and registered through state and territory departments of education. There are some early learning centres especially for children with special needs. Children who go to these centres for part of the week will generally also go to a mainstream preschool. Some states provide funding to help these children take part in mainstream classes.

Early childhood education is usually a good idea for young children with disability. Your early intervention provider should be able to tell you about the best local options. Ideally, the early intervention team and preschool workers will work together so they’re all doing what’s best for your child’s learning and development. This should help your child to ‘generalise’ her skills – use and practise skills from the early intervention centre in the wider community.

Helping your child: going to school

Families often say that it feels as if both parents and children are starting school – families of a child with disability might feel this way even more. You can really help your child with this big step by learning all you can about school options and feeling confident to speak up in your child’s best interests.

  • 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

Heading off to school is a step that you and your child make together. When your child has disability, you have an even bigger part to play. To help your child go well with this step, you can learn about school options and about how to speak up for your child. One great way to find out about your options is to talk to families like yours, who have children with disability already at school.

Preschool developmental assessment

A developmental assessment is a check of how your child is learning and developing. It’s often done in the year before children start compulsory schooling. It’s a good way to work out how your child is going. It also helps you, your early intervention team and the education system decide on the best school option for your child, as well as funding your child can get in a mainstream school. Your child’s early intervention team will be able to give you really useful advice to help with your family’s decision-making.

Transition to school

Transition to school is about helping children make a smooth start at school. Arrangements depend on your state or territory and also on your family and early intervention team. For example, transition could include visiting the school before term starts, holding meetings with your early intervention team and the staff who’ll be teaching your child, telling teachers about your child’s needs, or using visual materials to help your child get ready for the school environment.

Mainstream schools

Many children with developmental delay or disability go to mainstream school. You might hear the terms ‘integration’ or ‘inclusion’ used to describe this type of enrolment. State governments run mainstream schools, and states and territories also have religious and independent school systems. Students with disability can apply for funding to support their learning. This might include equipment and therapy or extra help in the classroom. Your child might also be able to get funding to work with special education teachers.

Satellite or support classes

Support or satellite classes are classes of 6-10 students with one teacher and usually a classroom aide. They work within larger mainstream schools in some states and often (but not always) aim to help children become part of the mainstream school population. Support or satellite classes usually have students with many different sorts of additional needs.

Special schools

The term ‘special school’ covers various education settings, which share similarities. For example, teachers in special schools have extra qualifications to teach children with disability and special needs. Also, each child usually has a program designed to work on that child’s individual learning needs. Usually, classes are small,
and teachers get help from other professionals, assistants and therapists. Students at special schools often have many special needs and need a very high level of support.

In some states, students can go to a special school for part of the week and a mainstream school for the rest of the week. In a few cases, special schools offer students a boarding option. Most special schools are generic – that is, they educate students with a wide range of disabilities and special needs. But some states and territories have disability-specific schools – for example, schools for children with autism spectrum disorder, or with vision or hearing impairments.

Home-schooling

All children are legally allowed to have home-schooling. Families choose to home-school their child for different reasons, including distance from a suitable school, religious or cultural values, or the particular academic or behaviour needs of their child. If you decide to home-school your child, you need to register for home-schooling – usually with your state or territory education department.

Government funding and financial support

Getting an official diagnosis can open doors to financial support and government assistance. The picture below shows funding and support options you can explore. This path also shows how you can get early intervention funding under the Better Start initiative.

  • 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. 

Formal 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. You’ll need your child’s official diagnosis to get some funding.

Federal Government funding

Children with disability and their families have rights to different kinds of financial support, often called funding entitlements. There are certain guidelines your child will need to fit into to get funding. You’ll usually have to apply for funding by filling out forms and seeing people – you don’t get access to funding automatically when your child is diagnosed with disability. Some funding entitlements only need you to give proof of your child’s diagnosis. Others will ask you to explain why you and your child need extra help. Some entitlements or services have only a limited amount of funding they can give people, so you might need to wait until the service says it can help you or your child. 

Better Start for Children with a Disability

The Australian Government’s Better Start for Children with Disability (Better Start) initiative provides funding for early intervention services. Children who are eligible can access up to $12 000 – up to a maximum of $6000 per financial year.

Children can get the funding if they’re under six and diagnosed with cerebral palsy, Down syndrome, Fragile X syndrome, or moderate greater vision or hearing impairments, including deafblindness, Prader-Willi syndrome, Williams syndrome, Angelman syndrome, Kabuki syndrome, Smith-Magenis syndrome, CHARGE syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome, or Microcephaly. Families
living in outer regional or remote areas might also be be able to get a
one-off payment of $2000. This payment is to help families living in
remote and outer regional areas get the services they need. It covers
expenses such as travel and home visits.

MyTime

MyTime is a national program that coordinates local support groups for families of young children with disability or chronic medical conditions. At your local MyTime group, you can socialise and share ideas with other families. Children go to the groups, and a helper works with them, which gives you time to chat. Each group also has a facilitator who supports families, helps them decide what they want to talk about, and gives them research-based parenting information. Groups have at least four parents or carers and usually meet once a week for a couple of hours. MyTime is funded by the federal government.

Continence Aids Payment Scheme

The Continence Aids Payment Scheme helps with the cost of continence products for people aged over five years who have permanent and severe incontinence because of certain neurological conditions, or permanent and severe incontinence caused by certain conditions.

Centrelink

Centrelink is an Australian Government agency that provides Federal government-funded services to the Australian community. These services include payments that support families, including families with young children with disability.

Carer Allowance

Carer Allowance (child) is a payment for parents or carers who look after children with disability or severe medical conditions at home every day. It isn’t means tested. It’s paid once every two weeks by Centrelink. For the application form, you and a medical professional each need to fill out a section. You can do this either before or after your child gets a formal diagnosis. Carer Allowance starts from the date you put the form in, not the date of diagnosis, so it’s a good idea to apply as soon as possible.

Carer Payment

Carer Payment (child) is an income support payment for people who can’t support themselves by doing paid work because they’re caring for a child with profound disability and extremely high care needs. This payment is means tested.

Health Care Card

When a family gets the Carer Allowance (child) or Carer Payment (child), the child can also get a Health Care Card. The card is usually sent to the child automatically when the Carer Allowance is set up. The Card means your child can get medicines at a lower cost than usual under the Pharmaceutical Benefits Scheme (PBS). Many GPs and some specialists bulk-bill people with Cards. Some cinemas, theatres, fun parks and major events let in people with Cards at a lower price, or give free entry to carers.

Commonwealth respite (Carelink)

Commonwealth respite (or Carelink) centres coordinate the National Respite for Carers Program (NCRP). This program supports people caring for someone with disability in their home. Carelink provides information about services available in your local area, and helps carers get respite.

Medicare funding

You can get Medicare benefits for many health and medical services and appointments. Generally, you need a referral from your GP to make an appointment with a professional whose service is covered by Medicare – for example, child psychiatrists, paediatricians, clinical psychologists and other special health professionals.

Better Start Medicare items

If your child has been diagnosed with cerebral palsy, Down syndrome, Fragile X syndrome, a moderate or greater vision or hearing impairment, Prader-Willi syndrome, Williams syndrome, Angelman syndrome, Kabuki syndrome, Smith-Magenis syndrome, CHARGE syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome, or Microcephaly, the Better Start for Children with a Disability initiative gives him Medicare rebates for:

  • up to four diagnostic or assessment services from psychologists, speech pathologists, occupational therapists, audiologists, physiotherapists, optometrists and orthoptists. These services are for children under 13 years
  • a treatment and management plan put together by a specialist, consultant physician or GP. These services are for children under 13 years
  • up to 20 early intervention treatment services from psychologists, speech pathologists, occupational therapists, audiologists, physiotherapists, optometrists and orthoptists. Your child will need a referral from a specialist, consultant physician or GP to get rebates for these services. These services are for children up to 15 years, but a treatment and management plan must be in place before children turn 13.

Medicare Safety Net

Medical costs can be very high, especially when you’re trying to get a diagnosis for your child or in the first few years after your child is diagnosed. You can register your family for the Medicare Safety Net (MSN). Under this program, Medicare pays higher benefits once your family has spent a certain amount on medical expenses in a calendar year. This is called ‘reaching your MSN threshold’. If your child has a Health Care Card, your MSN threshold is lowered, and you get higher benefits sooner.

Net Medical Expenses Tax Offset

Taxpayers can claim a tax rebate for a percentage of their family’s net medical expenses. Net medical expenses are the medical expenses you have paid, minus any refunds you got, or could get, from Medicare or a private health fund. You can claim a tax offset of 20% – 20 cents in the dollar – of your net medical expenses over $1500. There’s no upper limit on the amount you can claim.

Included in the list of medical expenses you might be able to get is ‘therapeutic treatment under the direction of a doctor’. This covers speech therapy, occupational therapy and some early intervention therapies (but not educational material). You need to have an annual referral letter from your doctor that says you or your child needs the services.

Chronic Disease Management (CDM) Medicare items

These Medicare items are for patients who have a chronic or terminal medical condition, including patients with complex care needs, and who need ongoing care from a multidisciplinary team that includes their GP and at least two other health or care providers. People of all ages, including children, can get these items.

A ‘chronic medical condition’ is one that has been or is likely to be present for at least six months.

If your child is being managed under two CDM items (GP Management Plan and Team Care Arrangements), she can get Medicare rebates on up to five allied health services each calendar year. Her GP must refer her to these services.

Individual allied health services available under CDM are Aboriginal health work, audiology, diabetes education, chiropractic services, dietetics, exercise physiology, mental health work, occupational therapy, osteopathy, physiotherapy, podiatry, psychology and speech pathology.

Your child can get CDM items as well as Better Start if she meets the conditions for both.

Better Access initiative

The Better Access initiative gives your child better access to mental health practitioners through Medicare.

If your child has an assessed mental disorder such as anxiety or depression, she might be able to get Medicare rebates for up to 10 allied mental health services each calendar year from psychologists, social workers and occupational therapists.

To get these rebates, your child must have a GP Mental Health Treatment Plan from a GP, psychiatrist or paediatrician, or a referred psychiatrist assessment and treatment plan, or a referral from an eligible psychiatrist or paediatrician to eligible allied health professionals. It doesn’t matter how old your child is.

State or territory disability department funding

Your child or your family might be able to get funding or support from your state or territory disability department to help with the cost of specific items or services.

Home and community care

Home and Community Care (HACC) funding helps community service organisations provide in-home respite care and other forms of home help. You usually have to pay part of the cost of the service.

Preschool inclusion

Your child’s preschool or kindergarten can apply for Kindergarten Inclusion Support funding. This funding can help the preschool or kindergarten support the inclusion of all children – including children with disability – in its program.

Concession schemes

If your child has a disability, your child might be able to pay less than usual for utility costs, public transport and taxi fares. Most concessions will apply only if your child has a Health Care Card.

Companion cards

Some people who have lifelong disability can get a free ticket for a companion to go to some community events and activities.

Aids and equipment

Aids and equipment programs help people who have lifelong or long-term disability to live and be a part of their communities by giving them equipment, aids and appliances that suit their needs. These programs often help with part of the cost of aids and equipment, and families need to find the money to cover the remaining cost. For other things, such as continence aids, you can get funding up to a certain amount per year.

You and your family: help and support

In most ways parenting a young child with disability is just like raising other children. Each life stage brings a different set of joys and challenges. You won’t be alone in finding it stressful and overwhelming at times. Keeping up your family connections and staying in touch with friends can be a huge help, as can learning where to find good-quality information and support.

Like all children, children with disability or developmental delay have a right to use generic services as well as disability-specific services.

  • 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 and services 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.

MyTime

MyTime is a national program that coordinates local support groups for families of young children with disabilities or chronic medical conditions. At your local MyTime group, you can socialise and share ideas with other families. Children go to the groups, and a helper works with them, which gives you time to chat. Each group also has a facilitator who supports families, helps them decide what to talk about, and gives them research-based parenting information. Groups have at least four parents and usually meet once a week for a couple of hours. MyTime is funded by the Federal Government.

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.

Helplines can also be valuable, especially if you need on-the-spot support. Parentline is a national telephone helpline for all parents of children aged 0-18. Lifeline offers telephone counselling throughout Australia, 24 hours a day, seven days a week.

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.
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  • Last Updated 18-01-2013