When your child first gets diagnosed with a disability, life can feel very overwhelming. Endless appointments, assessment and services mean that life may never be the same again. As a carer how do you manage a system that until recently was utterly foreign to you?
Changes are frequent in this sector, but the tips below are universal and remain the same regardless of the structure or system.
1. You are the expert
Even early in the game, you may have already heard the saying you are the expert in your child’s life. It is the standard line of so many workers in this industry and though it is well-meaning, what does it mean? It means its time to trust your gut, intuition, mummy gene, whatever you like to call it. Your child is yours and only yours, you are the one who knows them inside out, so you will know what your child ultimate needs from a service. If it doesn’t sit well with you, no matter what the services’ agenda may be, then it probably isn’t the right service for your child. Trust that feeling. Listen, take your time and then respond. If it a medical issue in the hospital then remember that you can always speak to a Nurse about Ryan’s Rule and demand a second opinion. Trust your gut and speak up!
2. Advocate, advocate, advocate
The truth of the matter is that services are resource poor. Now is always the best time to advocate for your child. Be prepared. What services does your child need? How much do you think they will really cost? Take notes in meetings, and take notes about your child to meetings and speak up. You deserve to be heard and so does your child.
3. The squeaky wheel does get the grease
The National Disability Insurance Agency, like all government departments, will say no before they say yes. This is a standard line. Know that if you keep advocating loudly, stating your case clearly and genuinely feel that what you are asking for is what your child needs then you will be heard. Be that parent who asks for it.
4. You have a CHOICE
New service providers are always developing, people have asked for choice and choice can only serve to provide more options for families. It is worth knowing that unlike the past there are more and more services available which mean more competition which means higher standards and the ball is in your court. There will always be another service that is willing to help you, you WILL find the right fit for your child.
5. Get help
This may be a whole new world for you, with new language, lots of jargon and service providers who you have never heard of. If you don’t understand what is being explained to you and, if you don’t know what to ask for, get help. Ask a trusted friend, a therapist or family member to you support you and guide you.
Help is available and with a clear understanding of what your child’s needs are you can make better choices for yourself and your child. That is the fundamental goal for every carer living within this daunting system.
This article was written by Carly Kelly-Fairweather who is a Brisbane Counsellor experienced and committed to supporting women and men in their transition to parenthood. https://www.carlykfcounselling.com.au