how to fund therapies for your young child

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.

 

Comments

  1. Many Health services have early intervention playgroups which can give you access to someone to talk to if you’re not sure where to start – they can help you navigate the system which can be super useful

    • Yes! after I published this and drove out I realised a good playgroup is a wonderful thing for a special needs mum and child! thanks for reminder too:)

  2. Such a well written and informative article! Navigating through health care options can be an absolute nightmare, and I think your post will shine a little light for parents currently lost in the darkness. Well done!

  3. thank you for this post. I have a friend who has had a gut feeling that she may need to delve further into her child’s ‘possible’ delays. She only mentioned it the other day for the first time to anyone and said she had no idea where to start as her paed kind of brushed off her concerns. I find through women communicating we are the best foundations of information. I was able to provide her with a name of a specialist that another friend works for. She was so grateful as she was finally taking some action. You could almost see the relief in her eyes as she realised this was the beginning of an action plan. My godson has Down’s syndrome and know how tough it was for his mum and dad too and they both work in the medical profession.

  4. It’s great to hear you talk about it and great if you can bring more awareness to her condition. My son has Dyspraxia, specifically verbal dyspraxia and has needed speech and OT from a very young age. It’s very hard to get help with funding. You can also get further OT help through the Mental Health Plan.

  5. Karen Thurn says:

    Children under the age of three in the US, are eligible for a free developmental screening for communication, cognitive, social, emotional, and gross and fine motor abilities. If they qualify, they can receive free early intervention services thru the IDEA act Part C. Check with your local school first as they may know where to find the early Intervention services. Then check with your state health department. Search on the internet for those services in your area. Keep asking where to find this service as it exists in each of the 50 states although it may be hard

  6. Hi Corrie,

    Thanks so much for this article. I’m going to save this one for families in my class.
    The other great service I always send people to is the “Family Referal Service”. They are run by bernardos and you can refer yourself. They help people who are newly diagnosed find any funding or services they are entitled to. They also help families without a diagnosis find one. This service if free and provides a friendly face when families really need one. They are the most fantastic people and very, very helpful.

  7. We have seen speech, OT, physio and social work for free through our local community health centre. There was a small wait initially but the services have been great!!!

    Hoping that the NDIS comes to our area before we ‘age out’ of the community centre.

  8. Just keep in mind that Sensory Processing Disorder isn’t an “official” diagnosis as it’s not recognized by the DSM. It is very hard to get Carers Allowance on that alone and can lead to many rejections before being approved (From experience with friends in support groups/parent groups). In saying that all 4 of my children and myself have SPD and ASD (1 with Cerebral Palsy too) and I receive carers for all four individually. It can help to strengthen an application with other co-morbid diagnosis’. If you have combined children with lower level disabilities/disorders they can make up to one.

    If you can’t work maybe look into Carers Payment as well. It is activity and income tested (combined family) but the worst that will happen is a rejection letter. Doesn’t hurt to try. As a single parent and part time student myself we wouldn’t survive without it.

    There is also the Carers Adjustment Payment for those not eligible for Carers payment. A diagnosis before 7 and in the last 2 years. Up to $10,000 depending on assessment. Definitely help with some costs.

    Can’t wait for NDIS here! Our kick off date is July 2016 and it can’t come quick enough. They have already been in contact to confirm details and organise our paperwork. It will be a God send!

    • thank you so much for that naomi, you are a wealth of information. we have NDIS here too coming july and it’s very exciting and our EI are getting ready to have information sessions. I’m so happy to hear that you will be receiving it for your children xxxxxxx

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