6 Essential Steps to Take When Your Child Is Diagnosed With a Disability
Receiving a diagnosis of disability can be a confronting and emotionally overwhelming experience.
When you’re dealing with such intense grief, anxiety and confusion, working out how to ensure your child has the best possible start in life can seem like an impossible task.
But it is an important one.
When your child is diagnosed with a disability, there are some definite steps that can help make sure your child (and your family) are linked into the best possible support.
To find out what those steps were, we spoke to CPL Allied Health Manager, Nicole Windridge.
After over 10 years supporting parents to find their way through that initial confusion, Nicole has her finger on the pulse when it comes to getting started.
Here’s what she recommends you do first (in this order).
1. Contact Disability Services in your state.
Nicole advises parents not to delay in making the call as Disability Services may have waiting lists for assessment.
She also said parents should be prepared for a conversation that may be challenging.
“Your first call to request support may be one of the toughest calls you will make, simply because the nature of having to go through your story in detail can be difficult,” she said.
While it’s understandable that parents would find this process hard-going, it’s important parents try to be thorough with answering their questions.
Talking through your history and details of your day-to-day life means the funding package you receive is more likely to meet your needs.
2. Contact Carers Australia
Your state association will be able to advice you on the Better Start program for kids under 7. This funding is available for a range of supports that will help your child. Children over the age of 7 may be entitled to 20 therapy sessions to be used before they turn 15, but only if the plan is in place before your child turns 13.
This is why it’s so important to engage early.
Carers Australia also offers free counselling for carers. Although counselling can seem a bit unnatural and confronting at first, accessing this kind of support has been proven to make a difference to how carers cope over the long term.
3. Get a Chronic Disease Plan for older children or adults
For parents who have battled it out alone and are seeking support for a child over the age of 13, Chronic Disease Plans are worth investigating. Talk to your GP about what Medicare items you may be eligible for.
Some GP’s will ask for a service provider number. You can contact CPL for help with this or any other service provider in your area. They’ll give you the information needed to satisfy the GP’s requirements.
4. Ask your GP if there are specialist services at your local hospital
Many local hospitals run programs or clinics that offer various services or therapies. This can be anything from botox to monitoring body changes to assisting with walking.
5. Find your local MyTime group
MyTime meetings are special parent support groups for parents’ of children with a disability or chronic illness. They may also include a helper who is able to supervise children so that parents can take a little break and interact with other parents.
Specialist playgroups can be found at local special schools, or in other school based locations. These playgroups may provide specific adaptions to support your child’s participation. This might be things like toys which move when you hit a switch. It can also be a place where you can see and try equipment, and talk to parents, teachers and therapists about your child’s play and learning.
Nicole says parents shouldn’t be discouraged if they don’t like the first group they go to. Sometimes finding the right network and connections can take some time.
6. Contact your local community centre
Community centres have their finger on the pulse when it comes to free and low-cost services that include counselling, financial services and relationship advice, just to name a few.
Nicole stresses that these services are available to a wide range of families and circumstances.
“These services are for everyone and the people you’ll meet there are diverse, compassionate and knowledgeable.”
Community centres offer you an opportunity to get out into the community, and help you build a strong support network, an aspect that’s essential for you to maintain your own wellbeing as a carer.
If you have another question about getting started after receiving a diagnosis, CPL can help. Contact them for more information.