More than 1000 people responded with ideas and stories. Thank you to everyone who took the time to fill out the survey and jot down their ideas. It was great to hear from so many people.

We met with the NDIA last Friday and shared the results with them. They reassured us they would take the feedback very seriously. They also said that they planned to make some more announcements very soon. We will keep an ear to the ground and share anything we hear with you.

This is the first of a number of surveys we plan to run over the next little while – we want to hear your thoughts and ideas about how the NDIS can be improved for people with disability and their families.

We want to make sure the NDIA and governments hear your voice – the voice of the people who fought so hard for the NDIS in the first place.

You can find a summary of the results of the survey below.

Other changes requested:

1.    Faster responses when needs change:

“There needs to be flexibility so the plan can easily/quickly be changed if the person’s needs/situation changes, particularly in emergency situations. In aged care, the Home Care Packages are very flexible, so the client can request to change their services and their case manager has authority to make the changes without having to get approval from a separate body (as long the expenditure doesn’t exceed the amount of approved funding).”

2.    Cut down wait times:

“Act QUICKLY on approved items, eg. I had pre-approval for my hospital type bed, my request was sent May the 1st, 2017, as yet I have not received my bed, I am truly suffering in Intractable pain, and the long slow process, doesnt help. My suffering continues to worsen.”

“Shorten the waiting list! We have been paying for us son to go to OT and speech and it is made us broke. I’ve been told even though we’ve been waiting for months it’s going to be at least another 3 months before first point of contact and then it’s going to take another month to two months to do the plan. We’re relying on food bank to survive. Yes we could stop the Early Intervention that we’re providing ourselves, but we’ve seen such a vast improvement in our son already.”

3.    Quick and clear communication:

“Answer phone call/ emails promptly and LISTEN to participants concerns and act on them promptly and not in three months’ time. Was extremely stressful dealing with the NDIA and the planner who left us high and dry during our process.”

“Be available and responsive – answer the phone calls, reply to the emails. And be open and honest in your responses – don’t play games.”

4.    Greater flexibility for people with psychosocial disability:

“Be more inclusive. The process favours certain disabilities. While NDIA explains it’s about goals and assisting people to navigate functional impairment, it also appears to discriminate against certain groups. For example, people experiencing personality disorders. This group have some of the most complex situations and often experience significant distinction, but are often excluded from NDIS or get minimal support because of misunderstandings of the effects of PD, especially BPD.”

“Recognise that some people with mental illness need a link with a service immediately post discharge for psychosocial support and recovery support. Plans can take up to 3 months! The momentum of recovery can be lost in the waiting time. This requires some funding to allow services to support without the formal plan in place. This is a change for the worse I have seen since ndis in place.”

5.    Listen to the experience of families and carers:

“Listen to the carers about the requirements of the client. My wife who is the primary carer of our disabled grandson told the facilitator from the NDIS, That under the ISP, Antibacterial hand and irrigation solution were used to stop cross infection of his open stoma and bladder. The facilitator deemed the products unnecessary. The client underwent an operation to remove the source of a bacterial infection in his bladder and stoma 27/10/17 because the supply of the products was ceased by the NDIS.”

“Allow carers to be involved in the plan. They usually live with this day to day and not all individuals react, need or want the same help. It is very difficult to sit and listen to someone tell you what you need when you know what is offered isn’t appropriate. I also believe that those with the greatest need should be attended to first. There is a lot of catch up to do for some families living with significant issues.”

6.    Fix the issues with transport:

“The issue of transport needs to be resolved. The application of funding for transport is currently inconsistent, and poorly understood by planners.”

“The only way we can provide transport for our daughter who has challenging complex needs is to lease a car with divider from her home service provider for $1500 pcm.   Without this she would not have access to the community and in turn her behaviours would intensify. We appreciate we must contribute to her life and we do via psychiatric, special menu etc but this is cost prohibitive. She is the extreme end of transport issues but highlights how important funding needs are for this area.”

7.    Put the person first – not the system:

“To remember that we are dealing with real people’s lives and that the NDIS Planning process is not just a matter of trying to fit responses into a tick and flick process. There has to be more consideration of the “person” and what their actual needs are – not about what the system says should be appropriate for them in terms of funding.”

“How they speak and treat us. Treat with respect. We are people and one likes to come away with a good feel as regards to their meeting.”

8.    Think differently about the needs of kids with disability:

“Children under 3 years of age are missing out since the NDIS arrived in our area. Before we could access block funded services who could do early screening and support the parent to access the service system. These early intervention screening services no longer provide this service. You have to have an NDIS plan to access them. We have gone backwards in this crucial area of early intervention with young children.”