EnableMe | enableme - stroke recovery and support

Hello NDIS, let's be friends.

Adrianon September 21, 2017

6 Comments

Hi Everyone,

This has been kicking around in my head for a while and it's time to press start.

Until recently I was privileged to be on the Consumer Council of the Stroke Foundation for 5 1/2 years. For the last 2 1/2 years of my time on the Council I felt we and the Foundation weren't doing enough to prepare and inform the stroke community about the impending arrival of the NDIS. I brought it up at every meeting and if I have a regret about my time on the Council it is that nothing has been done. Nothing. The Foundation has left us all to muddle through it on our own when it could've, should've, would've taken a lead role in disseminating information but didn't. The flow of information about the NDIS to enable me and you about the NDIS has been non-existent. Rant over and they know my feelings. If you're reading this Foundation there's still time hint, hint.

Where do I come in?

I'm really excited by the NDIS, I want to get that clear from the start and very recently I was granted access. I wanted to jump that hurdle before I started taking you on this friendship with me. I'm in! I have been thinking and learning about the NDIS and my participation in it for years, I figured if the Foundation isn't going to do anything about it I should. I work in Disability and run information sessions about the NDIS for people like you and me so I'm well placed to share relevant information. I also want to because everywhere I go in NSW in my role I see there is a real need for information.

But.. I'm not an expert, the only person I'm expert on is me. I encourage you to contact me and ask questions. My overarching caveat is "different strokes for different folks." We are all individuals with different needs and everyone's engagement with the NDIS will be unique. I'll try to answer your questions or point you in the right direction if I can but I don't claim to be an expert or have all the answers.

Why am I excited by the NDIS?

Declared self-interest...I want to retire to an Australia, in about 20 years, where disability is easy and normal. The NDIS is how this is going to happen and it will take a while. I can't sit on my bum and complain in 20 years when things aren't right, I have to have a red hot go to make that a reality. This NDIS makes that possible for you and me and we'll discuss that later. I'm not here to point out the holes in the cheese. The NDIS isn't perfect but it is a real act of civil decency and it has so much potential for positive change. I want to explore and demonstrate the potential.

For now I'm in and that's a good thing. I'm going discuss the practicalities and the importance of thinking about thinking about your NDIS in future blogs. I've got some interesting stuff to discuss and I hope you get something out of coming on my NDIS friendship. I've got my first planning meeting coming up soon and that's critical. Stay tuned and keep in touch.

Cheers,

Ade

6 Responses

Jude Czer

22/09/2017 07:01

Hi Adrian

Firstly and mostly, thanks for blogging about this. It will be great to follow your journey and it will be invaluable for other stroke survivors.

As you know, the NDIS is a work in progress and our StrokeLine staff have been following it closely. Our StrokeLine staff are confident to provide advice, and so far they have been able to get the answers they need from the NDIS quickly and easily. People can call StrokeLine on 1800 787 653 or email us on strokeline@strokefoundation.org.au

Our main role is to get people on the right path, and to make sure that they are accessing the NDIS communication channels – their telephone service and their website. Call 1800 800 110 or visit www.ndis.gov.au

But we’re always here when people have questions, are hitting barriers etc. Mostly we are hearing good stories so far. We’re not seeing any themes around access that we need to tackle, but we do know that there are concerns about how plans are developed. The MS Society has an excellent suite of resources to help with this, so we do direct people to their website. Visit www.ms.org.au

StrokeLine can also talk people through how to approach things – coaching about advocating for yourself, and sticking our noses in when needed, is our best skill.

We’re looking forward to seeing how things develop and to working with the NDIS and other organisations as it rolls out. But mostly we’re looking forward to reading your blogs!

Cheers Jude

Nina Wilde

24/09/2017 21:12

Hi Adrian

The NDIS is something I am certainly interested to know about as far as our stroke support group goes - thanks for bringing this topic up .

Sue

Diana

04/10/2017 01:45

I am looking forward to hearing more Ade.

Diana

11/02/2018 01:09

Pretty much every other disability organisation is well advanced with providing materials and support for NDIS. I am aware that the majority of stroke suffers are older and therefore not eligible for NDIS, but there are plenty of young survivors who desperately need help and advocacy and deserve help and support from the Stroke Foundation. I can't find anything like that on EnableMe.

In my husband's case, we gave the Access Request form and letters from the NDIA to the Rehabilitation Specialist to complete. She didn't bother to complete the form, but gave us a letter to submit. After waiting more than 3 months for the NDIS to even process this initial application, the specialist's letter was rejected as being inadequate to meet the eligibility criteria. I trusted the doctor knew what she was doing, and her professionalism, but this was misplaced. The NDIA told me at that time the stroke isn't even accepted as an eligible condition. Because people often recover from stroke and NDIS is for permanent disability, we have to go into the detail of what disabilities my husband has and the prognosis. This was not clear at all from the NDIA documentation. So know I have had to start all over again.

Why isn't the Stroke Foundation writing to all members under the NDIA eligible age to give them supporting information, or at least putting materials and resource links on the website? Why isn't the Stroke Foundation getting in touch with relevant medical colleges to provide educational material to treating doctors? The NDIS could be life changing for many younger stroke survivors, but as far as I can see the Stroke Foundation has done nothing to assist this cohort.

No good enough, where does all your funding go?

Jude Czer

12/02/2018 02:19

Hi AB

I'm really sorry to hear you have had such a difficult experience with applying for NDIS support.

Our health professionals on StrokeLine are always here to help with information, advice and support. Many of our calls are about navigating the service system, and advocating for yourself when things go wrong. Everyone's situation is different, so we provide individual advice. We do provide advice about the NDIS, but we also advise on every health and community service system survivors and carers come into contact with. You are very welcome to contact StrokeLine for advice - you can call us, or email us at any time.

We would very much like to have more materials on the NDIS available on EnableMe. We are not a government funded service provider, so our capacity is limited. Many disability organisations have built their capacity from receiving government funding, and are now moving to being NDIS providers. This isn’t our situation. We rely on our donors to fund StrokeLine, and we are very grateful to them, but our capacity is definitely limited.

We have applied, and will keep applying for funding to improve our information offering around the NDIS. In the meantime, we are planning to partner with another disability organisation to adapt their materials and make them available on EnableMe.

The information you received about stroke as an "ineligible” is definitely incorrect. NDIS is for people with permanent and significant disability, and expectations about recovery need to be documented, but there are thousands of stroke survivors receiving NDIS support. You might like to call me about this, and I can follow it up for you, particularly if it continues to be an issue throughout the process. I’ve private messaged you with my details, and it would be great to talk to you about your experiences and how we can help.

StrokeLine is available 9am to 5pm Australian Eastern Standard Time on 1800 787 653. You can also email us on strokeline@strokefoundation.org.au

Best wishes, Jude

Jordz

09/08/2023 10:31

Thanks for your comment Adri, I am finding ways to branch out more on here and recently became approved for NDIS. I hope it can also help inspire and teach me back into the old personality I had, take care and see you round

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Hello NDIS, let's be friends.

Adrianon September 21, 2017

6 Comments

Hi Everyone,

This has been kicking around in my head for a while and it's time to press start.

Where do I come in?

Why am I excited by the NDIS?

Cheers,

Ade

6 Responses

Jude Czer

22/09/2017 07:01

Hi Adrian

Firstly and mostly, thanks for blogging about this. It will be great to follow your journey and it will be invaluable for other stroke survivors.

StrokeLine can also talk people through how to approach things – coaching about advocating for yourself, and sticking our noses in when needed, is our best skill.

We’re looking forward to seeing how things develop and to working with the NDIS and other organisations as it rolls out. But mostly we’re looking forward to reading your blogs!

Cheers Jude

Nina Wilde

24/09/2017 21:12

Hi Adrian

The NDIS is something I am certainly interested to know about as far as our stroke support group goes - thanks for bringing this topic up .

Sue

Diana

04/10/2017 01:45

I am looking forward to hearing more Ade.

Diana

11/02/2018 01:09

No good enough, where does all your funding go?

Jude Czer

12/02/2018 02:19

Hi AB

I'm really sorry to hear you have had such a difficult experience with applying for NDIS support.

StrokeLine is available 9am to 5pm Australian Eastern Standard Time on 1800 787 653. You can also email us on strokeline@strokefoundation.org.au

Best wishes, Jude

Jordz

09/08/2023 10:31

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