My child has recently received a diagnosis of autism level 2. Now that we have the diagnosis I have started the process of getting ndis funding but not sure how to go about what services will be needed. There are recommendations on the report but no doubt these will change as the years progress. Is there someone I can go to that will help tailor services that we need?
Also is it unrealistic of me to think I can still work? I am a single mum, and work 64 hours a fortnight and it’s shift work, I really don’t want to not work as I enjoy my job for the most part but feel as though it stretches me just that little more thinner.
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4 Replies
ASD L2 mum here. NDIS veteran of four years. It's a wonderful help but can be difficult and stressful.
Don't worry about anything past the immediate need therapy wise. Plans are reassessed (used to be called 'reviewed') every year (try to avoid two year plans, less money I'm told) and you can request different services then. A good co ordinator can write broad goals to cover potential alterations in need in future.
You will be assigned an LAC (Local area co ordinator) whose job it is to help apply for a plan and write goals, answer questions etc. I won't lie - some are better than others (our service has gone to absolute rubbish). You also have options for managing funds. Self manage, a plan manager or NDIA managed. Each has pros and cons. I'm self managed & won't even allow therapy companies access to my son's account or funding amount. LAC can explain it all.
Now you have a diagnosis you may also be able to get non NDIS assistance through your school as well (teacher aide time, Dept. Education therapists to help make adjustments at school). Hit and miss and advocation required. I'm.in QLD so not sure about other states.
As for work, you'll need to work with therapists to find appropriate times. I will not take my son out of school for appts as that's more detrimental than helpful. I try to book as many in advance as possible (all but one will book entire year). You might have to go on wait lists as some places are in high demand.
Join local FB autism pages to ask questions about local services or NDIA discussion pages. You'll get there!
It's overwhelming and I still get confused over some funding. But it's made an incredibly positive impact. DS is 9 (he'll say 10 in two months and 15 days, mummy!) and doing brilliantly.
Single Mum of almost 30 year old asd lvl 3 son (amongst other diagnosis).
Don’t make any abrupt decisions about work. There are times I have worked easily, there have been times where I couldn’t work at all, there have been times work was what saved me. I’d look at a reduction in hours before giving up my job.
It’s important to have something for you, wether that’s work, or hobby.
We are onto our 7th NDIS plan. Yes it can be stressful, now we know what we are doing though it’s become much easier. One year plans are great for kids, as a lot can change in 12 months at that age. My son is in the adult stream though and he has 2 year plans and we have seen no reduction in the plan amounts.
Working out what therapies work for you and your child can be trial and error. There are good and bad therapists in every sector. So if one speech therapist/OT/behavioural therapist doesn’t work for you don’t write them all off. The trick is to ask for everything. If you ask for speech therapy funding and you find OT more helpful you can just use your funding for OT instead.
2 children with ASD, 4 and 16.
As it’s all new, ask for your first plan to allow for a support coordinator, this will be dependent on the child’s age as they don’t usually fund for a support coordinator if they are still young.
My daughter has a support coordinator, but in her first plan we only got an LAC and after 3 years, I still haven’t heard from them even when I called and emailed an implementation meeting.
If your child is younger than 7 I think, you can other places to help you get your first plan. In QLD I used the ‘benevolent society early intervention’ for my son and they did most of the hard work for me. I only went in with a 22 page OT report.
The service which you need will depend on what challenges your child has.
My daughter has an OT, dietitian, exercise physiologist and funding aside for psychological support. She also has support workers for community access and they have been amazing to help with improving her daily living tasks as she struggles a lot with this. She attends all of these after school, usually while I’m working with her support worker.
My son on the other hand only has an OT and speech therapist at this stage. My work, works around my sons appointments (so grateful) so every fortnight I do a half day, so he can see his OT and my ex (his dad) does the same the other week. As for his speech therapist, he’s still in daycare so the speech therapist comes to his daycare and he sits with her and a teacher and they do his therapy. My daycare loves this as they love them being able to help my son with his speech by using the suggested thing to help him. The speech therapist then emails me an update. I’d personally avoid this option if you can, because I find that it uses a lot of funding as they are paid for travel to and from daycare and it’s kinda expensive and takes a bit from funding. Sadly I can’t do it another other way right now, but if it’s the only option for you to have them travel that might be what works right away while things are new.
I work part time, my care needs for my daughter and son are to high for me to do full time work and the funding we have for support hours for my daughter don’t cover half the things she needs.
Always ask for more funding than what you think you’ll need.
Look around for the right people to help, this might mean you have to change if somethings not working. Our first OT was great, but I think lacked experience for my daughter, as she’s got complex needs over and above the ASD side of thing (she’s also tube fed). So we changed and have found a better match. We have had a few support worker, and while I thought they were great my daughter didn’t. So we changed and she’s now got an amazing worker we both love and would be lost without.
I got lucky with the OT and speech therapist for my son. He sees someone completely different to my daughter, as his needs are different so it was trial and error there as well.
I know how you're feeling. In 12 months, I've gone from having 4 quirky kids, to having 2 x ASD Level 3 kids, and going through the process now with a 3rd (definitely ASD, but level TBD). So I've had to very quickly learn the ins and outs!
Here's what I did with the 2nd diagnosis, that made life so much easier than the 1st.
Sit down with the report, and make notes on what the report says your child will need. Now, make notes on what you think your child needs the most help with, what you think are going to be your child's biggest hurdles in being ASD in a non-ASD world (primarily, what made you first think, 'OK, this kid is going to need some help') . Grab a hilighter, and hilight the sections in your notes where your concerns overlap with the report. These are the things you're going to want to focus on in your planning meeting (you apply for access, get approved for access, then you have a plannimg meeting to discuss goals).
I agree with getting a 12 month plan. My two children, with very similar diagnoses and needs, have very similar funding amounts, though one is for 12 months, and the other is for 24. (though, it's also possible that funding differences are related to the reporting expenses - you'll need reports from service providers to get your funding renewed, and the reports are pretty pricey).
I also highly recommend opting for a self managed plan. Waiting lists for services are horrendous at the moment (ringing around to be put on waiting lists, I've been told things like "absolutely no way to predict when we'll have a spot, but please call back every 2 months to let us know you're still interested" and "I can put you on the waiting list, but I'm fairly sure I won't have a spare spot before the end of the year" (in June! ). In fact, one place, I'm pretty sure we're on a waiting list to go on the waiting list! When looking for service providers, I found there were quite a few who couldn't take Agency-managed clients. There's a lot more flexibility with self-management. The claim process was really easy. Though, you do need to be able to pay the bills out, before they are reimbursed.
Then, you call a provider, you tell them you have a child with (diagnosis), that needs help with (goals from NDIS plan). Once you're booked in, your first few sessions will be an assessment, where they figure out what your child's needs are, and what they need to do. I felt really bumfuzzled with what I needed to do, and how I was going to help my child, and in the end, I contacted the providers the assessment report suggested (ie: speech, OT, etc) and they are figuring out the bits I thought would be hard. It's not like when you go to the physio and say "I can't do this with my elbow". It's like going to the physio and saying "my body isn't working properly when I'm in parks", and they figure out the rest.
Good luck.