New England MS Branch

29/08/2026

Negotiating NDIS is getting harder. Hope this information helps.

New NDIS changes start today. Here’s what you need to know.

From 27 August 2026, the first changes under the new NDIS legislation come into effect.

These include:
🔹 Plan reassessments
Only participants, plan nominees or child representatives can ask for an unscheduled plan reassessment. Requests must relate to a significant and ongoing change in functional capacity, support needs or key life circumstances. The NDIA will have 90 days to decide whether to reassess a plan.
🔹 New record-keeping requirements
Participants must keep relevant records for 3 years, nominees for 5 years and providers for 7 years. The NDIS says further rules will explain exactly what records need to be kept.
🔹 Stronger NDIA compliance and information-gathering powers
Participants and providers may be required to provide information to the NDIA, with stronger enforcement powers now available.
🔹 Changes to NDIS pricing powers
The Minister for Disability and the NDIS can now make pricing determinations. The NDIA says there are no immediate changes to current NDIS pricing.
🔹 More automated administrative action
Computer systems can now be used for some administrative actions, including claims and payment processing. The NDIA says safeguards and oversight will apply, and details of where automated systems are used must be published.

These are significant changes, and how they are implemented matters.

Every Australian Counts will be watching closely, listening to people with disability and families, and holding the Government and NDIA accountable for what happens in practice.
The legislation has passed. Our work to protect our NDIS continues.

More information: https://www.ndis.gov.au/ndis-laws/securing-ndis-future-generations
If these changes have already impacted you, we want to hear your story: https://forms.gle/SFPLCv2cCg5C46Zp9

If an NDIS decision is affecting you, you don’t have to navigate it alone. Contact the Disability Gateway on 1800 643 787 for help finding an independent disability advocate. If you need immediate emotional support, Lifeline is available 24/7 on 13 11 14.

[Image description: Red Every Australian Counts graphic reading: “NDIS Changes: Now in effect. New NDIS changes start today. Here’s what you need to know.” Includes an August 27 calendar icon.]

26/08/2026

For all the Carers out there, support is just as important for you as it is to those you care for. This is an option that I heartily recommend to you all.

26/08/2026

Many ask the question "Is MS genetic?". Maybe this is can help.

🧬 What role do genes play in MS?

Genes play a role in a person’s risk of developing multiple sclerosis, but MS is not strictly a genetic disorder. Researchers have identified more than 200 subtle genetic changes linked to MS risk, with many involved in regulating the immune system.

However, genes are only part of the picture. Environmental factors also play an important role, and having a family member with MS does not mean that someone will necessarily develop the condition.

Understanding the relationship between genetics, the immune system and environmental factors is helping researchers learn more about the causes of MS. 🔬

👉 Learn more about the role of genes in MS: https://www.msif.org/news/2018/09/27/the-role-of-genes-in-ms/

26/08/2026

Just a quick message to remind you all that the next Branch Meeting is on Monday 7th September at 10:30am at the Armidale Bowling Club.

As always, everyone is welcome to come along and see how we keep this branch functioning. It is always great to have different people came to the meeting to maybe add a different perspective of things; present some new ideas; give us feedback about how we are going, or just to come along and say hi and share a cuppa.

We look forward to seeing you, at any time.

07/08/2026

So, with the start of the month of August, we are fast approaching our next Support Meeting which will be held on Wednesday 12th August at 10:30am at the Armidale Bowling Club.

This meeting has been dubbed our Show & Tell meeting. We have often had people mention something in passing about an everyday item they have purchased from a local shop which has been helpful to them and we felt it would be beneficial to share these items and how they have made activities or chores easier. Sometimes it may not be the intended purpose of the item but rather an alternative use that someone has found that makes life a little easier.

Please bring along such items if you have any, or a photo of it, and share with us how it works for you. These things should be something readily available in a normal retail outlet, e.g. Kmart, Big W, Harvey Norman, Bing Lee, Coles, Woolworths, Aldi etc, or easily available online, as opposed to items that are specific to any disability shops that requires special access.

16/07/2026

The best treatment for multiple sclerosis (MS) might be antivirals that target the Epstein-Barr virus. Pharmaceutical companies are now being called on to develop such drugs after researchers studied the immune responses of people with and without the condition.

“There aren’t good Epstein-Barr virus drugs currently available, but they can be developed,” says Michael Levy at Harvard Medical School. “That might be the most useful specific therapy for MS in the future.”

MS is caused by an immune attack on myelin, a fatty sleeve that wraps around nerves. The loss of myelin reduces their ability to transmit signals and can cause a wide range of symptoms, including muscle weakness. Drugs that suppress the immune system can slow the progression of the condition.

Read more here: https://www.newscientist.com/article/2579595-best-treatment-for-multiple-sclerosis-may-be-anti-virals/

Image: Science Photo Library

16/07/2026

Yay..👏👏👏👏👏👏

MS Australia warmly welcomes the announcement from the Minister for Health and Aged Care, the Hon Mark Butler MP, that Ocrevus (ocrelizumab) and Kesimpta (ofatumumab) will remain available through the Pharmaceutical Benefits Scheme (PBS).

This is an incredibly important and deeply reassuring outcome for thousands of Australians living with multiple sclerosis (MS), their families, carers and clinicians, who have faced significant uncertainty about the future of their treatment access.

MS Australia also welcomes a PBAC review to better understand how these drugs are being used on the PBS and ensure the listings and therapeutic relativities remain consistent with the contemporary evidence base.

Such a review will provide greater confidence in the PBS and ensure that in the future, the critical and unique properties and benefits of a particular PBS-listed treatment are always considered.

Ocrevus and Kesimpta are high-efficacy disease-modifying therapies that are used as first-line treatments for many people with MS. MS is a complex and highly individual disease, and no single therapy is right for every person or at every stage of disease.

Continued access to a broad range of PBS-listed treatments is essential so that neurologists and people with MS can make timely, personalised treatment decisions that give each person the best chance of maintaining their health, independence, workforce participation and quality of life.

We thank Minister Butler for his strong public support for Australians living with MS and for recognising the difference these medicines make in people’s lives.

We also acknowledge the important role of the Pharmaceutical Benefits Advisory Committee and the Australian Government in safeguarding affordable access to effective medicines through the PBS.

Above all, MS Australia thanks the MS community for raising their voices and sharing their stories.

People living with MS, their families, clinicians, MS nurses and advocates made clear what was at stake: these treatments are not optional extras; they are life-changing medicines that help people remain well, active and connected to their communities.

MS Australia Director Sharlene Brown, who lives with MS and has been successfully treated with Ocrevus for more than seven years, echoes that sentiment.

“This announcement will bring enormous relief to people living with MS and their families. Continued PBS access means people can keep working with their neurologists to choose the treatment that is right for them, without the fear that effective options will be placed out of reach.”

MS Australia will continue to work constructively with government, clinicians, researchers, industry and the MS community to ensure the PBS remains responsive to the needs of people living with MS and other complex neurological conditions.

Today is a moment of relief for the MS community. MS Australia will remain focused on ensuring every Australian living with MS can access the right treatment, at the right time, at an affordable cost.

Rohan Greenland
CEO, MS Australia

Read the media release: https://bit.ly/4heGeyW

14/07/2026

Whilst this is an American site, it might still be of interest.

From infusions to oral medications, approved MS treatments are designed to help manage disease activity and progression. https://bit.ly/4wt9JlW

14/07/2026

Let's hope the Health Minister can help.

MS Australia CEO Rohan Greenland spoke to ABC Canberra Drive presenter Georgia Stynes on Wednesday about the life-changing MS medications that keep people in the workforce and in the community, reduce the amount of disability associated with MS and reduce costs to the Government and pressures on the NDIS.

Listen here: 2:20:00 – 2:26:11: https://ab.co/4p8sho6

14/07/2026

Researchers from University of Sydney are seeking people with MS using assistive devices (e.g., walker or wheelchair), to complete a 30-min online survey to explore personal experiences with physical activity and exercise.

You will be asked about your background, current levels of physical activity and exercise, and any factors that influence this.

Complete the survey 👉 https://bit.ly/3OZuMvH