I was actually going to write about the busy-ness of this time of year but keep seeing this question pop up online and wanted to write so many things so decided to write a blog post and share it. If there’s one thing you hear when a mum has a child in therapies such as speech, OT, physio or seeing a psychologist, well it’s how to fund it. You are probably paying a lot of money out of pocket, getting a bit back through your health fund or not and wondering when will it ever end and why don’t we have a diagnosis. Here are a few things that you could do to help out
1. Do you have a few issues going on in your child and are they under school age?
Let’s say you’re seeing speech, physio and maybe OT or something else but your current dr/paed hasn’t mentioned an assessment. Contact the nearest Child Development Unit near you and explain your child’s situation. They will ask for a referral from one of your specialists or your GP and they meet and discuss all the cases they have and who they will meet and assess and if not what they will recommend for you to do. Often a paediatrician won’t tell you about this service. Some like to wait and see but they offer a wonderful service. You can read more about them here and find your nearest one at your nearest large hospital (e.g Westmead Children’s, Royal North Shore etc). Waiting lists depend on your area and current demand. If the waiting list is too long then see if you can go private. Often a psychologist will offer an initial consultation and you can meet with me, they will have read the child’s history and they will determine whether a diagnostic assessment is required or not and you can go privately. This is not the cheap option but they can tell you their initial thoughts and if a diagnosis that will get you funding is likely then this might be the right option to access funding (I’m thinking specifically of ASD here when I write this which we don’t have but the current funding model would be helpful for some families).
2. Make sure you have an chronic disease management plan (previously called enhanced primary care and actually what I still call it!) and a mental health plan from your GP which you can use for specialists appointments and claim those costs through medicare. You won’t receive a full refund but will get some money back. Your GP will be a great help if you have a good one on what you can access.
3. Carers allowance
It took me a year or two before I applied for the carers allowance and the current payment of $121 a fortnight might not sound much compared to the cost of therapies but it helps and once a year a supplement is paid which can contribute significantly towards your costs. If you are rejected you can always appeal. And be prepared to be rejected. We were rejected even with a diagnosed disability but I asked why it was rejected and filled in my forms with a 2 page covering letter detailing everything I did for my 4 year old and demonstrated the level of care compared to a regular child her age. Even with a diagnosis of Sensory Processing Disorder you should be able to access the carers allowance depending on the age of your child – under a certain age it is harder to apply for because a child needs a high level of care anyway.
4.Look for organisations who can help you
Variety, Lifestart, Riding for the Disabled, Rainbow Swim Club, Aspect, Special Olympics, check out your local government area who should produce a guide for people living in the area with disabilities and all of the programs they run.
5. Look at your health fund
We reached our limit for speech and discovered we were on an old plan but if we changed to a new plan with higher limits we would get more back each visit and a higher limit. Contact your health fund to discuss your needs and the plan you are on.
6. Rotate therapies
We are on a break from physio and OT but made speech our priority this year with weekly speech. It put a big drain on finances but we are now seeing the benefits. A wise reader told me to take breaks, re-evaluate the greatest need, look for physical activities like swimming and dancing as a break from physio, what can you do at home that they love and will help them.
7. A diagnosed disability won’t necessarily solve all of your problems
Unfortunately under the current model and unless you are in a NDIS roll out zone, even an intellectual disability won’t give you access to funding. Some rare genetic conditions are included under better start funding but most aren’t. So what do you do? Do all of the above, find out when the NDIS is coming to your area and start working out what you want funding for.
8. Join Facebook groups
Other mums are going through what you are going through or one or two steps ahead of you. Ask questions, make sure you are receiving everything you are entitled to, talk to your GP as well and just stay up to date with everything.
9. Remain your child’s number 1 advocate
No one loves our children more than we do. It’s important to see our role as mum and also their case co-ordinator. We are responsible for their every day needs and we also need to make sure that we fight for what they need. Things will happen that are unfair or you will get rejections but it’s up to us to fight for them and make sure they receive what they are entitled to. I never want to become bitter or angry or annoyed with the system however flawed it is. Remember to stay proactive, research and find out what is best for your child and what you can do from home. Don’t rely on anyone else to solve your problems entirely. I did a wonderful course called Parents as Case Co-ordinators which put me in the driving seat. We set goals and looked at how as parents we need to take responsibility and manage our children’s therapies, needs, funding and more. I was already in that frame of mind but it did ensure I went after everything we were entitled to for our little girl to make sure she got the best start she could and also because it gets you into the system that when the NDIS comes through you are already working with organisations who you know and have relationships with.
10. Look after you
Did you know that you are also entitled to sessions with a plan through your GP so you can see a counsellor or psychologist. Discovering your child has a disability, coping with the extra demands, the day to day demands and more are a huge change for us. I had no idea what my friends with children with special needs were going through until we started walking the same road. Please make sure you are getting a break and time to rest and look after yourself. I keep this blog and my facebook page light and happy because that’s how I am but it doesn’t mean that I don’t go through absolute heartbreak and a range of emotions behind the scenes.
I hope that helps, if you have a question just ask.