Road blocks under the ndis

Having YOUR Voice 

2019 Australia Day Awards (Ipswich)

Event of the Year

Under the National Disability Insurance Scheme participants and their families should be in the drivers seat, in terms of directing how they want to be supported.  The NDIS journey is different for everyone and everyone to some degree is encountering road blocks and challenges.  My own journey has been no different and in one way you would expect this from a system that is untried. 

Some days its hard to remember that the scheme is still developing, when your watching your child or parent struggle or you're sitting in a wheelchair that needs replacing or your trying to find the right service provider; or only one of your three children with ASD is funded by the ndis.  Life with disability is constantly challenging and those who live with disability deal with access issues everyday.  

Inclusion Is but A Dream

Driving with one footplate

Every day is a reminder society was not designed to accommodate us.  Sadly, there are some members of the public that remind us of this, you should be locked in an institution. Who says that to people in 2019?  Many days social inclusion seems but a dream. 

With that as a back drop, we have transitioned from one model of disability care that was critically funded to a new system that was designed to empower people living with disabilities. Regular readers will know things have not gone according to plan.  Access to reliable information has been difficult and even the original ndis website was inaccessible.  A new website design was recently launch, so if you haven't done so you should check it out. 

I have highlighted many times my travel along the ndis road and being empowered to make your own choices is dependent on:

1. Access to information and;
2. Communication.

Regardless of how your plan is being managed you have the right to choose the service providers you access. This is not the decision of a host provider or plan manager.  These support services may offer suggestions and information on services provided in your area (information) as can your LAC (local area coordinator).  You may also find a google search helpful.  However my own journey has shown this is only part of the information you need to make choices around your supports. 

When you discuss your plan with existing support services, support coordinators or new support services you're considering, the information they're going to provide is:

• This is who we are
• This is what we offer
• These are our fees and charges (it is now law these are provided to you before signing an agreement)
• A service agreement that states:

          a) The period of agreement

          b) Descriptor of the service(s) to be accessed

          c) Fees and charges

          d) Agreed no. hours for each service

          e) Full quote for those hours (A total)

          f) Any out of pocket expenses

          g) The services responsibilities

          h) Your responsibilities

** A footnote: Participants should receive a copy of all invoices.  I know many I do not see. 

Even if you reach this stage of information that is provided you do not need to go ahead or you can ask for changes.  I do it often.  If you are unsure about the service agreement you can take or send a copy to your LAC to have it explained to you.  Not to be provided with a copy is illegal, whether a service thinks you can understand it or not. 

Buyer beware - you still do not have the whole picture.  The service agreement does not tell you if the service will support your goals; how many staff they have; if your goals and needs can be meet; and thus if this is the right service for you and your family.  So you need to ask:

• How the service will support your ndis goals?
• Do they offer any flexibility in service provision to better suit your ndis goals?
• Staff availability?
• Do they currently have trouble filling rosters and if so what is their bank up plan, will they use agency staff and how might this impact your service(s)

These are some of the many questions I wished I asked when considering service providers and signing service agreements.  I found many are happy to tell you what they think you want to know.

So you still do not have all the information you may need to make your informed choice.

• Ask other participants
• Join facebook forums
• Google for reviews.

Last week I found myself sitting in my six year old wheelchair whose footplate constantly needing replacing with a NO ENTRY sign in front of me.  Simply because of a lack of communication.  The ndia had knock back my new chair application in June 2018. I was told that all that was needed was more information - not it was a flat 'no'. 

After further questioning I found the ndia needed two new quotes and more information. Believing that to be the case I attempted to contact my physio, relaying the message that the ndia was trying to make contacted with her.  She assured me she had obtained a new quote, so I waited,

I heard nothing, even when I lodged an incident report involving the urgent repair to my chair for safety reasons.  Whoever uploaded the document should of seen my application was declined - nothing.

Finding last week I woke up Monday morning determine to find out where my review process was at, hoping it was just not sitting idle in the system somewhere.  I also contacted my LAC, who sent out emails in search for answer.  I had given the ndia until Thursday before contacting my MP.

Friday I finally got a phone call.  The ndia would never consider paying that much for a wheelchair.  Why I had to wait 7 months to be told that and my physio never passed that information on, I will never understand.

So I said to the man on the other end of the phone, I have nothing to lose by changing providers?

He believed that to be the case. I was able to give him the details of my new provider and consent to forward my file, previous application and request for additional information. 

This action took 30 minutes on the phone and now sits in my portal ready to action tomorrow.  I have already requested the first available appointment with my OT to review my assessment for the chair and discuss new information required.  Which my current physio has offered to assist with.

I then emailed my LAC with a update and request for budget review so I could complete the requirements.  She was horrified and asked I send her copies of everything when I had it and she would do everything to fast track the application.  She assumes a provider will let me see a copy, yet alone have a copy.

Service providers are still not being transparent with the information or billing the provide to the ndis.  This is about me, this affects my daily living and the choices I make.  Down to the art galleries and studio spaces I use for my art practice, I have a right to be informed every time my application progresses in the cue.  I should not have to threaten to go to a MP before receiving information about me.  This is not good enough!

Application for assisted technology for this price is the only part of my ndis plan I have no say in as I self-manage my plan.  Thus it is not my responsibility to chase things up.  I am paying physios and OTs to do that on my behalf - clearly the chain of communication in this area of my plan have stopped.

So if you've not heard anything for a while ASK! And ask until you get answers!

Ultimately I believe this road block occurred due to lack of information provided when I signed my service agreement.  Poor communication between me and the therapist prescribing the wheelchair and then no communication unless it was at my request.

The two keys to empower participants to make informed decisions about their choice for support. Had I known the service provider only had one physio for both the aged care clients and younger people with disabilities in Ipswich, Locker Valley, Toowoomba and out to Boonah,  I might of been less reluctant to sign the service agreement.

I soon realised the physio often she came or called after hours and often wrote reports in her own time because service agreements were out of date.  This service failed both me and their staff.

Services are happy to blame the ndis and lack of funding for poor service provision, however most of the road blocks I've had to unlock are due to poor information and lack of communication by providers.  The National Disability Insurance Agency can't be held responsible for that.

If you remember the backdrop I provided at the start of my post.  Participants and families are now adding this stress to the stress of living in a society designed to accommodate them.  Many support workers question why I seemed stress when my needs are being met.

Well today the answer is: somewhere between working part-time, running a small business, preparing for a solo exhibition, addressing my medical needs (about 3 appointments a week) and self-managing my plan (oh plus the admin I do for Disability Community Awareness and my blog) I now need to find the time to fit in completing my wheelchair application. Really there are only 24 hours in a day.

So forgive me if there is a day or two I feel like its all too much.  To the state and federal governments I said, funding and fixing the ndis is a nation priority!