Results of a recent survey by the grassroots campaign for the NDIS, Every Australian Counts have revealed serious concerns with the recommendations put forward by the NDIS Review.

The greatest concerns were related to the recommendation to require participants to be restricted to registered or enrolled providers.  68% of NDIS participants surveyed disagreed or strongly disagreed with the NDIS Review proposal while only 13% supported the proposal. Family members and nominees survey also opposed the changes. 58% of family members and nominees surveyed disagreed or strongly disagreed with the NDIS review proposal while only 22% of this group were in favour.

NDIS participants expressed deep concerns with the proposal for compulsory registration as outlined in the NDIS review. Specifically:

• A loss of choice and control over their supports
• The current registration model not actually working to keep individuals safe from abuse and ensure accountability.
• Limitations to the market available for support.
• Increasing monetary costs of services.

For some the  concern about this proposal was severe, fearing a total loss of supports for no benefit, and resulting in serious risks and danger. For example:

“Strongly disagree. This removes our choice and control totally. It feels like a removal of human rights.”

Family member or nominee for a NDIS participant

“This will destroy all of our current care arrangements and put the participant in extreme danger. Will put an end to self management.”

Family member or nominee for a NDIS participant

Many reported that they would lose existing supports as a result of compulsory registration and would no longer be able to access unregistered providers where needed. At the heart of this was a fear that the registration burden would be so great that their own long-trusted service providers would refuse to be registered. Some respondents were concerned that registration would mean that friends cannot be employed as support workers on a casual basis, or that only some types of providers would choose to register, thus limiting choice. Fears about continuity of supports can be seen in the following quotes:

“I have enquired with all my supports including my physiotherapist, gardener, and support workers if they would become registered providers if this came in.  They have all said NO.  If forced to use a registered provider I will be left with no supports of any kind.”

NDIS participant

“A HUGE amount of providers will choose not to register and we will completely lose choice”

NDIS participant

“I won’t be able to use my chosen providers … because the cost to register is unreasonable. I also want people who haven’t done the certificate because the course puts all disabled people in the same box and is often incorrect.”

Family member or nominee for a NDIS participant

There were also serious concerns about poor practices from registered providers:

“This would be tantamount to total control over people with a disability, would constitute a total loss of dignity, privacy and choice. Registered providers are invariably large institutions who only care about money and don’t offer person centred supports.   This removes all dignity, privacy, choice and control and reason to live for people with a disability.”

Family member or nominee for an NDIS participant

“Our amazing team of 6 support workers who we recruited have been supporting my family member from 3-10 years. If we were using registered providers they would be changing every six months…Pre NDIS we experienced the inconsistency in quality and reliability of supports who were more focused on promoting their brand than the people they were funded to care for.”

Family member or nominee for a NDIS participant

A significant number of survey respondents commented on the increased costs to them personally from having to move to larger providers, from existing providers passing on the costs if registration to participants, but also higher costs because of the inability to purchase goods from mainstream providers.

“I would be humiliated if all my supports were disability specific as there is no way a mainstream cleaning or gardening business would register for this. I would also no longer be able to access consumables for my needs as many are most affordable from Amazon etc. This smacks of a cash grab by big disability agencies.”

NDIS participant

Serious consequences feared by participants in regional and rural areas

Participants in regional and remote Australia were especially concerned that the burden of registration would further lessen the availability of supports in rural and regional areas.

“Since large providers don’t operate in regional or remote areas this will reduce access to support for disabled people living in the regions.”

Family member or nominee for a NDIS participant

“I live in a regional town.  There are no registered providers.  I use only unregistered providers, and they are excellent.  None of them are willing to register, which means that I would lose all my supports.  Please, please fight this.  This is NOT choice and control!!!”

NDIS participant

As an earlier quote shows there was a concern that compulsory registration would end self-management. This can also be seen in the following quote:

“I believe that all providers should be registered however I believe that self management should still be an option for participants, where services are being provided by non registered organisation and at the full dignity of risk and choice of the participant to still engage with that service.”

NDIS participant

Mandatory registration to increase cost pressures

The registration proposal was viewed as a threat to self-management because it would not allow participants the freedom to choose supports from mainstream and unregistered providers (e.g. supermarkets for continence aids). A recurring comment related to the preference to pay for supports without telling the provider that they were an NDIS participant because of a fear that doing so would mean the provider would charge more.

“Being able to use any company with an ABN is the only thing stopping providers from charging the maximum NDIS price every single time. If they know it’s through the NDIS the price goes up. Having the choice of any business is important to have choice and control.”

NDIS participant

“Some people treat you differently and start looking for ways to charge for extras when they know that you are a participant.”

NDIS participant

Linked to this was a concern about privacy with some not wanting to disclose that they had a disability and that they were funding a particular service through the NDIS.

Fears of basic rights being stripped away

There was also a strong opposition towards the housing and living recommendations, with only 14% of survey respondents supporting these recommendations.  Specifically, respondents were strongly opposed to the recommended model proposing one support worker for three participants (1:3 ratio).  They raised concerns about the compatibility of these changes with international human rights standards, specifically the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

“I strongly disagree that funding is based on a shared ratio and consider that to be a breach of the UNCRPD.”

Family member or nominee for a NDIS participant 

Respondents stressed the importance of being free to decide where you live and who you live with. They raised concerns about forced shared living arrangements undermining the right to live alone:

“These changes will reduce access to the choice of living in their own home for people who need greater than 1:3 support.”

Family member or nominee for a NDIS participant

“Everyone should have the right to live alone if they choose to.”

Family member or nominee for a NDIS participant

“I should have the right to live where I want to live.”

NDIS participant

Concerns related to choice and control were a strong theme throughout the report with participants expressing deep concern that a shift to block funded Navigators and foundational supports would impact on individual choice.  42% of survey respondents disagreed or strongly disagreed with the recommendation for navigators, with a further 14% agreeing with some of the changes but not others.  People with disability and families highly valued their ability to choose their Support Coordinators, who have been instrumental in supporting many people to navigate complex disability and mainstream support services and did not support any changes that would take this away.

Statement by Independent Chair of Every Australian Counts Dr George Taleporos

Today, Every Australian Counts releases an important report on what our disability community really think about the NDIS Review recommendations. This report is critically important because it finally gives us a voice.

Our community is greatly concerned that some of the changes proposed by the NDIS Review attack the key foundations of the NDIS that we fought for. Our community have spoken and have said a strong NO to any changes that will impact on our ability to be in control of where we live, who we live with and who provides our support.

As government prepares its response to the NDIS Review, we ask them to listen to the voices of the disability community and our clear message to defend participant choice and control in the NDIS. We want to work collaboratively with the government to ensure that the NDIS stays true to its original intentions and ask the Minister to meet with us to discuss our concerns and how they will be addressed.

At 12 PM today our community will gather together to discuss the findings outlined in this report, and what should happen next. We will be joined by our new Campaign Director Kevin Stone who will address the forum.

Check out the full report by selecting the links below. For media enquiries contact Kevin Stone 0418562922

Word version

PDF Version

Our thanks to all the people with disability, family members, nominees, advocates and providers who responded to our survey on the NDIS Review recommendations.  Thanks to Professor Jennifer Smith-Merry and Dr Damian Mellifont from the Centre for Disability Research and Policy at the University of Sydney who provided an initial analysis that informed the independent analysis done by Every Australian Counts.