Mainstream Rehabilitation

Hi Nancy,

Sorry to hear about your daughters stroke. Thank you for reaching out to our stroke community on EnableMe for suggestions and your advocacy in her recovery and ongoing access to rehabilitation.

We acknowledge the challenges accessing NDIS funding. Firstly I’d suggest if you haven’t already done so, is to speak with your daughters NDIS coordinator or local area coordinator about submitting an application for additional funding. Ensure you gather supporting evidence from her therapy team and clear evidence about her progress and the impact this additional funding would have on things such as her independence, safety, reduced need for support etc. You can find more information about the NDIS on our websites here and here.

People can access public rehabilitation at varying points in their recovery as an inpatient or outpatient, but you do need to have very clear goals and be assessed by the rehabilitation physician. Access and waitlists will vary. Your GP can make a referral to your local public neurological rehabilitation centre to see if this is something that your daughter would be eligible for or that they would consider. You can also ask BIRCH if it is possible that she can re-enter the program at a later stage in her recovery, given that NDIS cannot provide this ongoing therapy. Let them know about the limitations of her NDIS funding for rehabilitation and if there is another program they might suggest. 

The Young Stroke Service may also be of support. They are a new service currently running in Victoria and South Australia. They can support young stroke survivors aged between 18-55 years of age by assisting in recovery and providing some assessments connecting people to services and supports and treatment options. You can read more on their website and how to refer here: Our Services.

Another option would be looking at participating in research, which may grant you access to new therapies that wouldn’t otherwise be available. You can keep an eye out through the Australia and New Zealand Clinical Trial Registry for any trials that might be in your local area. You can find the site at: https://www.anzctr.org.au/Default.aspx.  The Stroke Foundation website will also add any research trials that we are notified about too, so do keep an eye on our site here. 

You can always reach out to StrokeLine by contacting us on 1800 787 653 or email strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEST. 

Wishing you and you daughter all the best,

Bec and the StrokeLine team

I second the recommendation for the Young Stroke Service. There's also plans to run the upper limb Boot Camp again, please get in touch with Brenton.Hordacre@unisa.edu.au for more info on that. Re NDIS, I would recommend the steps outlined by the StrokeLine team, if you have any issues with NDIS after that please reach out to to DACCSA who my sister Monique works for.   

Hello Nancy. If your daughter has the speech difficulty called aphasia, the Australian Aphasia Association has a lot of free or low cost support and services on its webpage www.aphasia.org.au and Facebook page. 

Thank you for your support and replies. I have been able to book her into the UniSA Boot Camp next year, so that’s a positive and some intensive speech sessions through Flinders Uni next year too. 

I have reached out to BIRCH as well as The Young Stroke Service who we had engaged previously and we have her name down for other programs if and when they arise. She has also enrolled with SASI for the next 8 weeks and hopefully can find a sport to pursue. 

She does have aphasia, so we will look at what services they can provide. The hardest thing is putting her schedule together and hope none of them clash and she’s back on a waiting list. 

We will be attending a Brain Injury Fundraiser on Saturday and this will give us the opportunity to network and find out more on the services out there and how others have dealt with the NDIS. 

She has so much potential and don’t want to miss any opportunities 

Thanks again for your responses. Really appreciate it. 

Hi Nancy

Thanks for sharing.

I also am a stroke person. 

I have been in rehab for the last 4 years.

My suggestion would be to look at day rehab services, outpatients departments or public brain injury services.

I have used all these services and have had great success  with them.

Good luck

Hi Nancy,

To hear of your dedication to finding ways to support and include you daughter in life is so,...beautiful. And that there are places which you can link into.

I'm 55 years old and had my major brainstem stroke at 22 years old in 1993.  I am still finding new ways in which my body is recovering.

Sending strength and compassion.

Nina

Physio cost unfunded people $90 while the charge NDIS $190 , Speech is a form of ASPHIXA , yes they do 3 sessions in hospital but the rest you pay for or NDIS will pay at an inflated rate , yes that is what Iwas told in hospital and results aren't gaurenteed . Took me 4 years to get on NDIS . And been fighting with them since to get funds .