Lived Experience Forum

[Queenie]

It’s interesting you talk about rorting and inflated prices under the NDIS @eth. 

It is costing my plan close to $7000 for gym sessions for fifty two sessions. Yes, given they guided by an exercise physiologist but so far there’s nothing covered that a personal trainer couldn’t do. A gym membership certainly doesn’t cost nearly as much, even with regular PT sessions.

I finally get to meet my support coordinator this week. Only eight weeks later, so winning!

[eth]

Wow @Queenie  that's over the top for gym activities.  I go to an aquatic physiotherapy centre and do water tai chi twice a week in a heated pool taught by a physiotherapist.  They only charge me $12 a lesson, the same as anyone else with a concession card.  Then I have been getting reimbursed for that from my NDIS funds.  Only thing is that now I need to use everything left in that category for the driving lessons, so will have to pay out of pocket for the tai chi.  Still, I can afford it out of my pension and it's well worth the price.

I think what a lot of services do is look at the NDIS Price Guide and charge the maximum possible.  e.g. one organisation I use it's $66 per hour for week day support workers.  And yet with HireUp it's only $47 per hour.  So guess which one I'm using mostly!  They are pricing themselves out of having a customer.  The bottom line is that we are customers and have a right to shop around, even if agency managed.

It's nice to hear from you.  How are you going lately?

[Queenie]

 Hey @eth  thanks for asking after me, I’ve been keeping busy but lately my mood has just crashed. My psychologist wants me to use art to paint some pretty triggering stuff but I’m not sure I’m ready for it. I mean to produce such triggering images needs to happen only when I’m mentally prepared for it.

 I’m still coming to terms with the inoperable arthritis in my back. I just hope it doesn’t progress too quickly.

I’m only now catching up with threads, how have you been?

[Alone]

Gosh, isnt the rorting by services with the NDIS crazy!  I'm finding that my plan so far is all about how much money people can make from my plan, rather than helping me!  Everyone is just doing what they want and not bothering to include me.

I signed up with a company for social support yesterday, it looks like they are going to be reasonable about things and not charge the limit but I am finding so many people just lie to get you to sign up and then dont care about delivering services.

My support coordinator just sets up meetings and then doesnt help with setting up supports or anything.  She's not listening to me, and I dont have the words or energy to fight with her because she is my second one and I've only had my plan less than 2 months.

I have been watching the parliament reviews (I think thats what they are called) that are going on and have been putting in submissions to tell them what its been like for me.  I hope they will listen and change things for the better.

[eth]

Morning @Queenie Sorry to hear about your back.  Which type of arthritis is it - rheumatoid or osteo?  If it's osteo then massage can help a lot.  If it's rheumatoid herbal medicine has a lot to offer.  I agree about needing to be in a better place to handle doing the images of trauma.  I am doing EMDR and find it really amazing the way it's altering and laying down new neural pathways and helping me remember without reliving events.

Really hope it goes well for you with your coordinator of supports.

I went to visit my adult child and their family for 10 days and just got back late friday.  Had a mostly lovely time there.  My grandchildren are 5 and 11 months old.  And a delight to be with.  Plus it was a really healing time in my relationship with my child (now 30).  It was possibly the first time in their life that they actually wanted and accepted my help (post-op care and they couldn't do any lifting or reaching yet - double mastectomy).  They are legally blind and all their life it's been 'Don't help me' and 'I can do it myself' - even when they couldn't.  This time around they were just grateful and much gentler towards me - I felt appreciated.  By the husband too, who went back to work when I got there and is out of the house 12hrs a day during the week.  My child's recovery is going really well which is such a relief.  And the children are thriving and developing rapidly.  Miss 5 is full of sass and bub laughs heaps - a pleasure to hang out with them.  But exhausted when I came home that's for sure.

The only glitch in the whole trip was an afternoon outing with a branch of my support organisation that went awry.  I will be doing a formal complaint about it when I am up to writing about it.  Overall I had 4 panic attacks in 2 1/2 hrs and wept all the way home.  And it was meant to be a 'mindfulness walk'.  They ignored my needs and one of the guys in the group acted up really full-on a couple of times.  It was awful.

Back into it all here now - will be doing driving lessons, have to organize podiatry and optometrist, doing the water tai chi 2x/wk, my bridge partner gets back at the end of the week so will see her probably 2x/wk as well, and am entering a couple of writing competitions, doing creative writing group monthly and live readings monthly - whew.  And that's on top of essentials - psychologist and psychiatrist, gp, shopping etc.  I really need my down times when I get them.  Heading out for a few hours today and tomorrow then home on Thursday.

Hope that being back on the forums helps to lift your mood somewhat.  Tag me anytime you want to talk and I'll always get back to you when I'm able to.  Take care xx

[eth]

Hi @Alone  sorry to hear you're having a rough trot with a next-to-useless CoS.  Maybe you could write her an email stating your needs and cc her manager.  You could spend a few days making a list of what is and isn't happening that doesn't work for you and what you do need from them.  That's what I'm planning to do.  Mine let me down badly yesterday and it's really the final straw.

Hope things pan out well with the new support organisation.  I believe you have the right to shop around for a CoS that suits your needs better.  I'd be interested to hear about the process you went through to change yours as I need to do that now too.

Sounds like you're doing a good job with the submissions, which will help many.  

Have a peaceful day today and take care x

[Alone]

Hi @eth  I sent an email to my first support coordinator asking when she was going to do anything and she replied with a list of things she had done, which wasnt much.  So I went on facebook and put in a complaint to her company via PM.  They got the CEO and she emailed and sorted it out for me and made sure I was okay (had food etc).   She looked at both sides of the situation and said she'd refund the hours that the first SC had spent (not all companies will)

Then I emailed the local NDIS office as they had contacted me in the beginning to pick a support coordinator and told them what was happening.  They said to let them know when I had chosen a new one.  Apparently the first company had to do something with the NDIS to change the end date of our agreement, I dont know exactly how but they had to do that before the new one can get paid.

The second one isnt completely useless, she's just deciding things for me and when I email her about it she gets all professional and puts me off guard.  I did arrange for an appointment with her to come over here, and when she got here I gave her a list of things to do.  She got more done in that hour than she had in the almost 3 weeks prior!

People are talking quickly and my brain doesnt work fast enough to keep up.  If I try and email the SC for help I keep getting the "I'm out of the office today" message.  Or she will arrange for me to meet a service (by myself) and then tell them I will take it from there without talking to me about it,  but I dont have enough knowledge to do so.  If I try and tell her that I dont get a response.  She actually answered some questions I had for a meeting yesterday, 20 mins after the meeting had started!!  But I needed them before the meeting so it was too late.

One of the things I said in my submission to the politicians is that we need a private place where participants can review the support companies and workers without fear of reprisal so that we can see who to trust, or who might be a good fit.  We also need a single person who is there just to make sure we are okay, their pay shouldnt depend on time they spend on us (cause my Sc spent time googling stuff that I didnt need her to!).

We need to speak up in these parliament enquiries while we can.  It doesnt have to be a "professional" submission, just write and say whats happening to you and how it is affecting you, and what they could do to improve it.  I wrote mine in my own words, nothing fancy, but at least I had a say.  If we dont tell them, they dont know.

[eth]

Hi @Alone  thanks for sharing that info with me.  I understand your frustrations with both the CoS's you mention.   I need to sit down and write up the bad experiences I've had with and because of my CoS but haven't been able to do so yet.  Must get onto it but am having a busy few days.  I'm really not up to writing submissions at this stage, but really glad to hear you are.  I agree it's very important.  However, I am a member of a disability alliance that is very active in the political sphere and also gives me a peer mentor who will help me sort all this out.  I'm still being gentle with myself when I get time since my trip away (got back late Friday) and another triggering/flooding event on Monday.  I talked with my psychologist and psychiatrist yesterday about both the recent major problems and they both backed me 100% that it's well out of order and I shouldn't have been exposed in that way.  My psychologist is going to write to my CoS's manager about both events and the consequences and effect on me.  

Take care and hope today is one of the better ones for you.

[CheerBear]

I've had some very wonky experiences on my NDIS journey so far. I had to give up trying to use my useless plan for anything other than psych and recently counselling (which is so helpful so I'm not complaining about that) and a small amount of support worker-ish stuff, though not in a way that works well for me. I put in a request for a plan review at the start of Feb and that didn't come around. It was a huge stress and source of distress for a while so I let it go. My scheduled plan review has come up now and with that all the stress has come flooding back. I really, really struggle with anything to do with the NDIS. It's already doing my head in 🙁

[Queenie]

I just met with my support coordinator @CheerBear @eth @Alone and others following along.

She is going to put in for a funding review immediately as I don’t have enough funds to pay for psychology in my plan. She’s also pushing for my degenerative arthritis as my primary diagnosis and schizophrenia as my secondary disability. She wants to do this because she thinks it’ll open up a lot more funding. I have to have an assessment with an OT and my gp also. Here’s hoping it works out.