sometimes I’m so sick of fighting

Today has just been one of those days where I’ve said enough with the waiting, enough with calling the NDIS every 2nd day only to be told the review is in the system or we are still waiting to change the disability or the office aren’t answering the phone so let me send them an email. I really did just wake up and think I’m so sick of fighting! Why do I have to fight for services. We have 2 fights going on at the moment- one is with the NDIS for a new plan as it was review time but we’ve found out errors were made with her 1st plan and the 2nd fight is with assisted school transport. And this is the reason I do the fighting….to make her life easier and to help her in any way that we can!

We are eligible for transport to our special school and home again but they put her on a route in the opposite direction to school and wanted her to spend 1 hour 40 minutes in transport each morning when school is 25 minutes from home. There is a route just around the corner from me but they couldn’t put us on that one they had to put us on a route where there was space, forget how long she would need to sit in transport or that it was totally the opposite direction to school or home and no one would be home when they wanted to collect her.

It just became a joke when they’d ring and encourage me to use the transport route offered and suggest I leave her with a neighbour until transport arrived. When we appealed and had it go to the panel they finally acknowledged that it was the wrong route to put her on and they would find an alternative. But here we are the last week of term 1 and still waiting for school transport. It’s an 11 week term and I’ve almost given up on getting transport to school.

The NDIS has however been the biggest stress for our family and when I say family I mean me because I’m the one who has had to deal with it. Yes I know I wrote a really positive post on the NDIS when we got our plan and early intervention assured me that was the best I was going to get. If I wanted to appeal it then I would go to the back of the queue. When we went to our review meeting in March this year (which had been brought forward as funds lasted 6 months) it was revealed to me that the full disability had not been recorded by the NDIS. No one had listed her genetic condition and physical disability. Her disability should been recorded as a genetic condition causing x, y and z and instead it was just recorded as x.

We had been with our early intervention provider (Lifestart) for 4 years, they assured me that they didn’t need her diagnosis and specialist reports as they had everything they needed and she was automatically approved for the scheme because she was on their books. I sat with my big binder of reports and the planner said oh no I don’t need those. A week before the planning meeting when I said I would gather everything up I was told oh don’t worry about that we won’t need them for a while. In hindsight I should have been making sure they didn’t leave the house without copies of every report I had.

Little things came to light over time – why were early intervention only using the word respite when the NDIS doesn’t use the word respite but refers to support and support workers. I was being told respite, respite and respite and yet it’s not used by the NDIS. Meanwhile her classmates with similar disabilities had no problem accessing support in the home.  I was told if I wanted to appeal the 1st plan that we would go to the back of the queue and be unable to spend our funds. Incorrect advice, you are able to use your funds and ask for a review.

I was charged for every phone call and email by the same branch when we started to use our funds for OT. A 45 minute session in the park was costing up to $225 of NDIS funds because the emails, calls, planning were adding up to over the $175 NDIS rate for 1 hour of therapy. I think someone missed their calling as a solicitor or accountant and wanted to bill. I actually tell my other therapists who don’t charge me for every bit of correspondence to please charge me if you need to write a report for the NDIS and they do. I pay for their time and expertise but none of our other therapists or early intervention centres bill us for phone calls and emails. And they’ve told me that they don’t plan to either.

They advised that therapy funds aren’t to be used for 1 on 1 therapies, oh she assured me it was for a speech therapist to visit my daughter’s activities and school and give suggestions of how they can help her. Really? You think that a child who has the speech of a toddler is going to learn speech and language that way. You don’t think that 1 on 1 speech therapy is the best therapy because that is what has worked in the past. It’s actually reasonable for a family to ask for 1 on 1 speech therapy on a regular basis as part of their NDIS plan but this planner had a way of telling me that I wasn’t supposed to use my funds for that purpose.

So towards the end of last year when things were really getting bad and we were looking at going back to school, we saw 2 new psychologists and updated our diagnosis. This was part of my scheme to go to my review meeting properly prepared. I read all I could and was not going to rely on early intervention’s advice. We sought the help of an advocate, a very experienced social worker who had run courses in the past that I had attended. She sent me away with my homework, making sure I crossed my t’s and dotted my i’s and I mean really did everything properly. We needed orthotics but early intervention didn’t advise me to get a referral from a physio and a separate quote for the cost of the orthotics from the podiatrist. Hot tip this is what you need to do for the NDIS. You need to itemise what is needed, how much it costs and the total cost for the 12 months of your plan and at NDIS rates too. If services are transitioning to the NDIS you need to obtain quotes of what the new costs will be under the NDIS and have them included in your plan.

And so when March came around and with most of our therapies on hold we contacted the NDIS again to get a new plan. We could have completed a change of circumstances but they advised me to bring the meeting forward. Now that we were 7 we could access full NDIS and were assigned to Uniting. We had an amazing planner, she had a disability herself. She taught me a few new things and she really listened. When I asked if I needed to supply her with anything else she said I doubt it, you’ve covered everything. I had reports from every single therapist, recommendations and 2 psychologists assessments performed late last year. That in itself has been a time consuming task that took up most of term 4 last year.

It’s now been nearly a month and we’re still waiting but after today’s tearful phone call to the NDIS I think we might have a new plan in place soon. We’ve had more dramas as the file was too big for the NDIS to open and so there was a delay in getting all of the files over and it’s taken 3 weeks to get to the point where the request for the plan to be written has started! Today! So I’m still hopeful, I’ve invested so much time and energy into this process. The phone calls, oh the phone calls where you need to introduce yourself and retell your story and why you’re calling every single time.

My hope is that you can read this and be prepared! Please check that you or your child’s disability is recorded correctly by the planner and the NDIS – all the stress I’ve been through to find out that no one called to check or ask that the disability was correct. Don’t take the planner’s or early intervention’s advice as gold. Find out your own independent advice. Talk to other mums and get an idea of their plans. There is so much secrecy and zero consistency between plans. Write a story about the person you are seeking a plan for, include photos, describe a typical day, the impact on the family, the biggest issues, goals (short term, medium term and long term). Make sure that the planner takes this document so that if you miss anything in the planning meeting you have an extra level of protection that the planner can read it.

I hope your experience isn’t as stressful as ours……….and I hope our problems can be resolved so I can get back to being a mum and carer and not a fighter who spends hours on the phone to organisations trying to access services that we should be receiving! I’m writing this post while I’m fired up because it just shouldn’t be this hard.

 

Comments

  1. Jeanette says:

    We need early intervention. Started the NDIS process last July. Child is now 18 months and had no therapies. needs speech, physio,OT etc. She has a global delay of nine months at 18 months old. Early intervention is urgent if this child is ever going to walk. It is harder for me as the foster parent as I have no power. I was told we will contact you in three weeks to do the plan. 6 weeks and waiting. So frustrated and sad for this little girl who needs a lot more.

  2. Being the parent of a child with a special needs disability it shouldn’t be as difficult as it is to get help/funding/services for our children. In WA the NDIS has not been implemented in most of the state yet and I wonder if we will be forced to join it after hearing all the horror stories. Is it any wonder that so many of the carers are diagnosed with depression. You are not alone in your fight.

  3. Oh my goodness Corrie, I just skimmed through this and will read it properly later but I work as a Support Coordinator so know all to well the headaches caused by the NDIS! I hope you get the new place through very soon!

  4. Sorry to read of your experience Corrie. How absolutely frustrating! Hoping it all gets sorted for you and lovely Miss Elodie soon.

  5. This post doesn’t instill me with any confidence, we are about to go down this route with my niece ‘s third child. It has been a battle even to get the first assessment. The advise is different depending on who you are talking to. You seem to go around in circles. It is the same with Mental Health so frustrating and sad that those in need are not getting the help they need. Really hard on the whole family.

  6. NDIS is a joke. I have severe hearing loss but get nothing because my hearing is not bad enough across all decibels (i qualify for some sounds but it has to be complete hearing loss to even get a cent). Despite the fact that my audiologist said there is no way she can understand that i even function without hearing aids. I cant afford the $6000 to get them so I just have to live with only hearing half a conversation. When people complain about their glasses costing $150 i just laugh.
    I hope yours comes through.

  7. Oh my word. Thank you for filling us in on this – lots of people stand to benefit from your experience. We have NDIS up and running in our area, but I have opted not to transfer to it until we have to. My two children who have hearing loss qualified for Better Start and we can use that until it runs out. I just knew that NDIS was going to be a bundle of difficulties and I wanted to watch and learn from other people.
    It’s such a shame that Elodie didn’t qualify for Better Start (it’s really only useful for those who have a ‘tick the box’ disability’, right?). She is so blessed to have a mum who can fight for her and follow through on all those loose ends, but I’m sad to hear all the stress that it’s caused you. You are a great mum. x

  8. Miraculous Prayer to the Holy Spirit

    Holy Spirit, you who makes me see everything and shows me the way to reach my ideal, you who gives me the divine gift to forgive and forget all the wrong that is done to me and you who are in all instances of my life with me. I, in this short dialogue, want to thank you for everything, and affirm once more that I never want to be separated from you no matter how great the material desires may be. I want to be with you and my loved ones in your perpetual glory. To that end and submitting to God’s holy will, I ask form you… (mention your favour). Amen

    This prayer should be said for 3 consecutive days. After the 3rd day, your sincere wish will be granted no matter how difficult it may be. Promise to offer thanksgiving by sharing it and expressing it on granting of your favour. The idea is to spread the wonder of the Holy Spirit.

  9. I worked in early intervention , I could see the changes and didn’t like what I saw , I left before the block funding ran out and the ndis kicked in , I’m so glad I did , I feel for you and other parents fighting this battle for your kids , it’s awful and so so wrong !!

  10. Oh, Corrie, I’m so sorry & disappointed for your family that this has been your experience. I have had a positive experience so far (except for a 2 month delay between Plan Review meeting and Plan Approval, which in our case didn’t cause too much of a hardship). I was really fortunate when we first started with the NDIS, that our planner was quite thorough, even though the Plan preparation meeting was all conducted by phone and followed up by email. He told me to get reports from all of Jack’s therapists and from Jack’s Learning Support team at school. The reports set out his needs over a 12 month period and a very detailed costing. I managed the first Plan & while I could have better managed the Plan, I now know where I went wrong and will approach it a bit differently this time more to Jack’s benefit. The Planning Review meeting for his second Plan was done through Uniting and again the lady who did it was quite specific about supporting documentation and how she worded his disability & the impact on his life and detailed goals. She was fantastic & as a result we have a better Plan for Jack. I hope that your persistence & advocacy for Elodie comes to a positive result very soon, intervention & assistance is imperative for the development of our kids and for ensuring they have a meaningful & fulfilled life. All the best Corrie & fingers crossed

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