Sasha's story – fighting an endless battle for her son's needs

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Sasha's story – fighting an endless battle for her son's needs

For two years my husband and I have fought what feels like an endless battle for our son, Marcus. When Marcus was almost three the National Disability Insurance Scheme (NDIS) took him on as a participant. Marcus has autism spectrum disorder. His first plan did not have enough funding for the early intervention he needed. 

Read about how Sasha fought an endless battle for her son's needs.

For two years my husband and I have fought what feels like an endless battle for our son, Marcus. When Marcus was almost three the NDIS took him on as a participant. Marcus has autism spectrum disorder. His first plan did not have enough funding for the early intervention he needed. 

I applied for review of Marcus’ statement of participant supports just after his third birthday in late 2017. The National Disability Insurance Agency (NDIA) did not conduct this review. I felt that they had completely disregarded the application and Marcus was not being heard. I didn’t know what to do. 

It was only when a disability advocate assisted us a year later that the NDIA acknowledged our review request. In the meantime, our family were out-of-pocket covering much of the cost of Marcus’ early intervention needs. 

Once an internal review decision was made a year after we asked for review our advocate helped us to apply for AAT review and then Victoria Legal Aid took our case on. 

There was so much back and forth

Several case conferences were held over months. There was so much back and forth, with the NDIA requesting reports, statements, weekly schedules and assessments from us. And then the waiting, waiting, waiting, endless waiting. This drawn-out process caused so much stress within our home, our concern for our son and the unknown tested the strength of our relationships and our family. We questioned ourselves as if we had done something wrong or something terrible to deserve this.

A conciliation was finally scheduled in June 2019 – almost two years after we asked for the review. We were hopeful that the case would resolve. There was so much anxiety leading up to the conciliation, sleepless nights, stress, tears, worry, fear and questions. How will we cope if we don’t get a good outcome? What will we do? What does the future hold for our son if we can’t get help? 

Despite the constant disappointment we had experienced in dealing with the NDIA, we still had hope.

The morning we arrived for our conciliation, our lawyer advised us that the NDIA lawyers had emailed them on the business day before the conciliation at 6 pm that there were some legal technicalities that meant that a decision could not be made in Marcus’ case. We were in absolute disbelief. We had already experienced an emotional roller-coaster and this just added to our stress and anxiety. When the conciliation started, we were told that the NDIA would act in good faith and proceed to make a decision, if agreement could be reached, regardless of this technicality. 

At the conciliation my husband and I were given the opportunity to speak. It was such an emotional build-up to this point. This day was a day that could change our lives and finally give our son the help he needs and deserves. We spoke about the stress, the financial pressure, the strained relationships, depression, the debt we incurred in order to help our son, the lack of support from the NDIA, the frustration, ongoing worry and heartache. The Special Adviser who attended the conciliation on behalf of the NDIA acknowledged that Marcus’ plan did not meet his early intervention needs. The NDIA and their legal team left the room to deliberate. They returned after 15 minutes and advised us that they would like to make an offer, which they did and we agreed to. They advised us that consent orders would need to be written and signed which would take approximately three weeks. We were elated, we had finally resolved this, we felt a sense of relief, we felt so many emotions, a weight lifted from our shoulders that in three weeks we would have the funding to continue Marcus’ therapy. We were in disbelief, it was over. At least this was what we thought. 

Endless waiting

Three and a half months later and we are still waiting. I ask myself the question - how are we still waiting? They promised us this funding to help our son. We are in such a difficult situation trying to scrape the bottom of the barrel to pay therapy bills when our conciliation was held months ago. We came to an agreement with the NDIA and in good faith we trusted them. We trusted that they would keep their word and finally help our son.

The NDIA asked us to create goals for Marcus’s new plan, we did that. They have asked us for documents they already had, we have sent them again. We continue to follow up the status of the consent orders that were agreed to and continue to get bounced around to different people from different departments in the NDIA. Communication is poor, we don’t know who is overseeing Marcus’s case, we don’t know who is responsible, we don’t know who to contact and we don’t know when or if we will get what has been promised. 

Dealing with the NDIA has been a painful experience. I feel like I have been banging my head against a brick wall. Just when we think we have taken one step forward, we are forced two steps back. We will never stop fighting for our son but it shouldn’t have to be this hard to get the help he needs and deserves. Marcus is now five-years-old and has so much potential. This process has taken two years now. Every day is crucial for early intervention and making gains in functioning.

We just want Marcus to have a bright future where he can function to the best of his ability. We feel deflated, extremely disappointed and disheartened. We are exhausted and just need help. 

Our committed advocate and lawyer have stuck by our side throughout this and sent endless emails and made countless phone calls on our behalf. They continue to pursue this with us and will do so until the NDIA fulfil the promises they have made.

I am extremely concerned about those who do not have such support or do not have the capacity to pursue the NDIA. The ability to navigate through this system so difficult that it is so easy to just become so disheartened and give up. People need to be able to access support and be heard if the NDIA wants us to 'see how the NDIS is making a difference'. 

How Victoria Legal Aid can help

Call us for free information how we can help you to get support with the National Disability Insurance Scheme:

If we can’t help, we can refer you to other organisations that can.

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