All great changes are preceded by uncertainty

With the roll-out of the NDIS, the service delivery landscape in the disability sector will forever change in Australia. For some, this change will bring a certainty in the sourcing of support services while for others it will raise unrealistic expectations of what the NDIS will provide to the individual.

At the outset, the reality check will reveal that the NDIS is not akin to the TAC and that is where part of the problem is already surfacing, with some seeking and expecting overseas holidays on the expectation list.

To date, MDA has been supporting the MD Community with a significant raft of services which are detailed below and in most cases without cost. In fact, about the only service we charge for is CampMDA and that fee certainly comes nowhere near to covering the total cost of the CampMDA program.

Today, we were advised that our modest government funding will be reduced by a significant amount and we will need to roll-out a charging regime for all our programs and services.

We have already received notification from two NDIS regions that some MD clients have already nominated MDA as a “service provider”. It would be very helpful and will ensure continuity and uninterrupted service delivery if all members of the MD Community included MDA in their pool of service providers. Can I ask that you do this?

This will then enable MDA to assist in crafting your NDIS package and subsequently recoup service delivery costs at levels agreed through government funding models.

If you as part of the MD Community do not nominate MDA as a service provider, then when full government funding is removed from MDA (and every other service provider agency) there will be no funds available to conduct our programs and services. The NDIS is forcing “user pay” upon all agencies.

Client Programs and Services

  • Funding information including eligibility to concessions, DHHS, funding applications, Case Management
  • Referrals to Allied Health Services, DHHS, Local council supports and access to carer..
  • General disorder information and support
  • Advocacy
  • Equipment Information
  • Information about the latest research
  • Special Calendar Social events
  • Cough Assist Machine rental
  • General client support
  • MD Net program-connecting people on their request by phone/e-mail (Matched by MD type, age, or circumstances)
  • Regular client welfare calls
  • Monthly newsletter
  • School support
  • Information for teachers/Aides
  • How to educate other students about MD
  • Referral to the Royal Children’s Hospital Education Institute to assist with complex situations eg. bullying
  • EducationMD Seminar
  • Social Groups
  • Facilitated and funded by MDA
  • Groups organised by region and disorder specific
  • Emphasis on networking in a relaxed environment
  • Respite Opportunities
  • Week-long CampMDA conducted four times per year with full carer support and staff provided
  • Regular weekend breaks (OperationMD ShortBreak and OperationMD SWAP) in various locations, clients matched by age, all expenses paid – providing well needed respite for families
  • Day trips – Clients matched in many cases
  • Mini-camp days, indoor activities for younger children to get used to respite

All of these services will be impacted upon by withdrawal of funding. The only way these services will continue to support the MD Community will be through cost recovery via NDIS. Please don’t assume that these services will continue if you have not included them in the planning process.

Despite conducting some fantastic fundraising campaigns throughout the year, the money raised from this is simply not enough to fund our current programs, services and research. For example, our very successful National Superhero Week 2016 raised an incredible $80,000 for research at the National Muscular Dystrophy Research Centre. If we were to use this money to fund camps, at $30,000 per camp, it is still not enough to cover four camps per year. Likewise, our Run for Strength Fun Run raises approximately $30,000 each year, which may fund one camp but is not guaranteed. Basing our program and services delivery on fundraising dollars is a risky and unsustainable practice, as they are dollars that are never guaranteed.

It is therefore imperative that you take the time to nominate MDA within your pool of support agencies when you meet with your NDIS Planner. You also need to ensure that your Planner is aware of your condition and how it will manifest in the future. Our Client Services Team will be available to assist you with this process.

As you know, MDA has been the support for families affected by MD for over 30 years. We are working towards a world without Muscular Dystrophy, whilst providing support and hope to those currently affected by the disorder. We try to make the lives of the MD community a little bit easier with our support services, as well as working tirelessly to find timely treatments and one day a cure. These funding cuts are a very real threat to what we have worked so hard for and we are asking for your help to ensure MDA can continue to provide the programs, services and research to the MD community for another 30 years to come and beyond.

Your future funding and receipt of services is now in your hands, so please ensure you make fully informed decisions.

Boris M Struk

Executive Director