Whether you’re juggling medications and hospital stays, arranging support services and therapy appointments, or simply traversing the day-to-day ups and downs of life with a special needs baby or child – mama, we think you’re bloody amazing.
You’re no doubt doing an epic job of loving on your adorable little person. But parents with special needs children generally need a fair amount of TLC themselves.
On top of the general stress involved in raising a child (which is enough to break any of us!), you’re at risk of ‘caregiver burnout’. This nasty guy can affect everything from your mental health, to your physical health, to your marriage – not good.
Asking for help, and seeking out specific parenting resources to support you, can take some of the pressure off, so you can focus on enjoying your little love.
We’ve rounded up some of the most useful resources for parents of babies with special needs below. Ah, but first:
What is a ‘special needs child’?
‘Special needs’ refers to a huge variety of challenges or health conditions that can impact everyday life. Some are genetic conditions present from birth, while other issues are identified as your baby develops. Your paediatric and maternal child health checkups are key when it comes to how to identify a baby with special needs. It’s why all those cheeky developmental milestones are scrutinised.
Here are a few examples of specific special needs:
- Medical issues: congenital conditions like cerebral palsy, chronic conditions like diabetes or asthma, disabilities like deafness or blindness, serious conditions like cancer or heart defects, or even health threats like food allergies.
- Behaviour issues: like ADHD or Tourette’s syndrome.
- Developmental issues: like autism or Down syndrome.
- Mental health issues: like anxiety, depression, or attachment issues.
- Learning issues: like dyslexia or auditory processing disorder.
There are plenty more we could add to this list, too. Some of these impact life more than others, but they all fall under that blanket ‘special needs’ term.
So, where does a mother of a special needs child go for support? We’re glad you asked.
Help for parents of special needs children: State by state
Hit up your state’s government website to dive into policies (always an exciting read), programs, support services, and funding opportunities for children with special needs. There are lots of great resources you can tap into to help you and your family live life to the full – despite what challenges have been thrown your way.
Many states also have dedicated nonprofit organisations (NFPs) that provide support, information, community programs, and advocacy services.
Here are some places to start out in your search for quality parenting resources to help manage a special needs baby or child.
ACT
ACT Government – Community Services
NFPs –
NSW
NSW Government – Communities & Justice
NFPs –
NT
Northern Territory Government – Office of Disability
QLD
NFPs –
SA
NFPs –
TAS
Tasmania Government – Department of Communities
NFPs –
VIC
Victoria Government – Department of Families, Fairness and Housing
NFPs –
WA
Western Australia Government – Department of Communities
NFPs –
National support services
There are also a bunch of organisations you can turn to for additional support, education and understanding, and community connection.
General resources for parents with special needs children
Children and Young People With Disability Australia (CYDA)
CYDA collects stories from families with lived experiences of disability, connects you with services, raises public awareness and liaises directly with the government to push for better services. You’ll benefit from their handy articles and programs.
Association for Children with a Disability
ACD publishes information and resources to help you and your child. There’s also a free support line you can call during business hours, for tips or a good old-fashioned chinwag.
Reimagine Australia
Reimagine Australia is highly involved in research into early intervention for children with developmental delays or disabilities. It’s a great place to access parenting resources, as well as workshops, seminars, and conferences.
National Disability Insurance Scheme (NDIS)
This is where you should go to suss out if your family is eligible for funding support. Plus, the NDIS website helps you access information about support services, respite opportunities, support groups, and more.
Disability Advocacy Finder
Use this tool to find contact details of disability advocacy agencies in your area. (While you’re obviously your child’s most passionate advocate, it never hurts to have someone on your side!)
Disability Gateway
Search for support services to help across all realms of daily life with a special needs baby or child – from finances, to assisted living technologies, to transport options.
Specific special needs parenting resources
The following is in no way an exhaustive list of special needs resources for parents in Australia, so we encourage you to do some research of your own. Even if your child has a rare and obscure condition, we’ll bet there’s a support community somewhere online!
Visual impairment resources for parents
- Vision Australia – A leading not-for-profit that raises funds for vision impairment and blindness research, informs government policies, and connects families to relatable stories and support groups.
- Guide Dogs Australia – More than just cute puppies, Guide Dogs offers informational content and tips to help you support your vision-impaired child.
Deafness resources for parents
- Aussie Deaf Kids – Offers information and support to families with hearing impaired children.
- NextSense – This awesome organisation supports kids with sight and hearing problems. Most notably, they can connect you with leading surgeons to organise cochlear implants.
Down Syndrome resources for parents
- Down Syndrome Australia – Whether you’re processing prenatal scans that indicate Down syndrome, or you’re planning for your child to enter school (and one day the workforce!) this organisation offers support and information to guide you.
Autism resources for parents
- Autism Awareness Australia – Offers advice, resources, news and NDIS information for families with autism.
- The Spectrum – This website has a great course specifically for parents of children aged 0–6 with autism, or in the process of being diagnosed. You’ll learn how to handle, and celebrate, having a neurodiverse child.
- Amaze – This organisation has a comprehensive database of articles on all aspects of life with autism, including education, peer support, and managing behaviours.
Cerebral Palsy resources for parents
- Cerebral Palsy Australia – A great place to go read stories of how other families manage life with CP.
- Cerebral Palsy Alliance – This organisation does research in neuroplasticity, and offers services for people with cerebral palsy, other genetic and developmental delay conditions, and acquired brain injury.
Support for parents and carers
Accessing support services for your special needs baby or child is one thing. And yes, it’s important to get help with funding their treatment, equipment, and education needs. But mama, you need to get help for YOU as well.
First port of call: counselling. We reckon all parents (and even pregnant women) should get support with their mental health! And you’ve got even more going on than the average.
Beyond that, these resources are amazing for families or single parents with a special needs child.
MyTime
Use MyTime to find physical support groups in your area. You can connect with other parents of special needs children, and have relaxing, comforting discussions supported by a trained facilitator. As a bonus – a play helper on hand to take care of the kids while you chat. Woo hoo!
The Mighty
The Mighty is like a social platform for all things disability and health. You can join general groups (e.g. “all disability”), or specific groups (“mums of autistic kids that watch Seinfeld on Tuesdays” – okay, maybe not THAT specific). Connect over caregiving experiences, and share your tips and stories with others in the same boat. Or just have a good, solid vent.
Carers Australia
Carers Australia provides tools and tips for being a carer while trying to do the rest of life as well. Like work, and see friends, and have time for yourself.
Carer Gateway
This Australian Government resource offers free services and support for carers. You can use it to access counselling, peer support groups, emergency respite, and more.
Online communities
Hit up Facebook and Instagram for groups you can join. This is an epic way to connect with other parents of special needs children, swap stories, share advice, and unwind in a safe space.
Support for siblings
Siblings of special needs children face challenges all of their own. Thankfully, there are resources available specifically for them!
Siblings Australia
Check out resources on how to support your other children, understand their experience of life with a special needs sibling, and help them thrive in school and beyond.
Livewire
Created by the Starlight Children’s Foundation, this is a platform for teenagers (aged 12–20) with chronic health conditions, and their siblings. It’s a great place for older kids to connect and deal with the stuff they’re going through.
Financial support services
Financial planning for a special needs child may not exactly be top of mind when you’re making your baby budget. But parents of special needs children usually face some stressful financial sh*t at one point or another. Whether it’s needing to fork out cash for the latest medical tech, or being unable to work because of your caring duties, you’ll want to get financial support where you can.
Here are some resources that might help you out.
Centrelink
Depending on your unique circumstances, you may be able to get Centrelink payments to support your special needs baby or child. These include:
- Carer Allowance – if you’re under the income threshold and provide daily care for a child with a disability, you might be eligible for this payment.
- Carer Payment – you might be eligible for this if your special needs child requires full-time care, meaning you can’t go to work.
- Carer Supplement – you might qualify for an additional payment of up to $600 per year if you tick all the boxes.
- Carer Adjustment Payment – this once-off payment of up to $10,000 may be available to families following a catastrophic event (i.e. car accident, childhood stroke, cancer) where a child younger than 7 is diagnosed with a severe disability or medical condition.
- Child Disability Assistance Payment – this automatic payment could be available to you if you care for a child under 16 with a serious illness or disability.
As annoying as it may be to deal with Centrelink (and its notoriously long call wait time), it may be worth exploring these subsidy options to see if they can help you out. Check out the Centrelink website for information on how the Government supports health care costs of children, and what you’re entitled to when you’re caring for a special needs child.
Department of Education, Skills and Employment
The Australian Government’s child care package is designed to give working parents support with child care costs. You may be eligible for a child care subsidy, depending on your circumstances (income etc.).
But how can I send my special needs child to daycare, you ask?
The Government has also developed an Inclusion Support Program to ensure that even parents with special needs children can access this support. Huzzah for inclusion!
