SUBMISSION TO THE SENATE JOINT STANDING COMMITTEE –

PARTICIPANT – DI ROOK PARENT

Issue One – living with the threat of reduced funding

My son moved from WA Disability Services Commission funding to NDIS funding in April, 2020. In the lead up to his first annual review his accommodation provider advised that NDIA were “suggesting” a $40k reduction to his Supported Independent Living (SIL) funding. SIL is in fact a misnomer for shared living or group home accommodation. I sought reasons for this “suggestion” and received three different reasons:

• NDIA does not fund handover shifts – there were no such shifts.
• Other resident/s had changed circumstances – there were no changes.
• The original plan was an error.
• I was also told that the genesis of the “suggestion” arose from a desktop review.

The following twenty months was a succession of many internal meetings and relentless requests for more and more documentation to substantiate our assertion that any reduction was inappropriate. circumstances have been documented over his 49 years and in particular from the time that he went into out-of-home care at age 16 years in 1989.

has been one of many SIL participants whose lives and those of their service providers and ageing parents have been traumatised in the last two years by the onslaught of severe SIL funding cuts which I believe were informed by the following:

At p.7 of the NDIS Report “Review of Pricing Arrangements for Supported Independent Living’ – July 2021:

There were 412,543 active participants with an approved plan in the Scheme at 30 September 2020. Of these, 23,457 (5.7% of all participants) had SIL included in their plans. A total of $29.3 billion of annualised committed support was in participant plans as at 30 September 2020, with some $8.3 billion committed in participant plans for SIL participants (28% of all commitments).1

These figures show that if generalised funding reduction was the objective where better to start than with group home residents, many/most of whom are older people who correspondingly have old parents. At age 74 I am the youngest of the parents associated with group home. We range in age from 74 to 86. As a group we and our sons are very vulnerable. They can’t speak for themselves and we are fading, particularly after the relentless, debilitating, cruel and unreasonable journey we have endured as this David and Goliath battle has ensued.

1 NDIA. (2020). NDIS Quarterly Report to Disability Ministers 30 September 2020, p.539-541.

To conclude the story of our exhausting journey over 20 months:

• 8.4.22 a Plan arrived in the portal - $33k SIL reduction (all four men in the house had various funding reduced)
• 14.6.22 Review meeting to address the funding loss.
• Time dragged on and on 28.9.22 I had a letter to the Editor of the West Australian published and my local State Member of Parliament sought information.
• 4.10.22 new Plan arrived in the portal with various inaccuracies. Reinstated the $33k reduction + $6k _
• 7.10.22 supposedly corrected Plan provided – still some of the same inaccuracies plus more. It was agreed that in consideration of the huge administrative burden involved in correcting and issuing another Plan we would accept ‘an alert’ being placed on file to be fixed at the next review.

Issue Two – cumbersome and inefficient work practices

I would like to bring to attention the very poor and inefficient work practices that are the hallmark of my experience with NDIA.

• There is no continuity of relationship between participants and NDIA staff.
• Almost all communication from NDIA – emails, plans and correspondence are poorly written, riddled with mistakes and missing text.
• When a Plan is sent and found to have mistakes, a new corrected Plan is issued rather than allowing the original Plan to have draft status until the participant has seen and approved it. Inaccurate information was contained in the plan issued 4.10.22 necessitating the issue of an amended plan - 7.10.22. This cumbersome and inefficient approach meant that the various providers all had to send me new contracts for both the 4.10.22 and 7.10.22 Plans.

Issue Three – having to endure annual Plan Reviews

Like many other older parents I cannot continue to live under the shadow of a forthcoming Annual Planning Review. These reviews have become Funding Reviews more than Planing Reviews. The prospect of having to prove level of disability every year is too much for me. It also imposes a huge burden on his main provider whose team has to get all kinds of internal and external reports and assessments in place to satisfy NDIA. also has to be taken to specialists for statements of his ‘current’ need for support.This is so frustrating and I ask the question: Who benefits?

I am told that has to have yearly reviews because his Plan includes some Restrictive Practices (RPs). Overseeing Restrictive Practices is really the province of the Quality and Safeguards Commission, not the NDIA.

• Having his front door locked is one such Restrictive Practice. Without this in place the agency would be in breach of duty of care as would wander off and having no traffic sense would probably by hit by a car.

• Another Restrictive Practice is the medication prescribed for by his highly reputable Psychiatrist. As there are no medications specifically applicable to complex situation these medications are deemed to be Restrictive Practices.
• Having the pantry, fridge door and chemical cupboard doors locked also constitutes Restrictive Practices.

The process of reporting to the Quality and Safeguards Commission regularly on all of these RPs is totally cumbersome, inefficient and non productive. Every shift (24/7 staffing) has to report on all RPs then head office has to report on to the Commission. will have to have these practices in place for the rest of his life (see NDIS email extract below) so I question: Who benefits. His agency is bogged down with this regime because many of their clients are people like

I offer the following extract from a Senior NDIS Planner:

         I understand your frustration at        latest plan being only 12 months. While the Quality
  and Safegards Commission does expect annual reviews of restrictive practices2, the NDIS
    also likes to monitor these practices every plan review as it is an expectation that, where
    possible, they be reduced as a Participant builds capacity. In       case, it is clear he will not
  be able to live independently without restrictive practices in place to ensure his and others
    safety.

          I also note the concerns you have with some of the mistakes and wording in       current
    plan. Rather than do a review to change these, is it acceptable that I make a primary alert on
     his record that these need to be changed next plan. I ask this as a review will interrupt
    services and require new service bookings for all involved.

   As for the language about     “improving”, it is unlikely any senior planner doing future
    plans would consider     as being capable of improving his capacity or ability to live
   independently leading to a reduction is supports or funding. In my case, I often use language
    to maintain a “positive” picture of a Participant’s abilities rather than express more sober
    descriptions. While the NDIS is about capacity building, there is a very real understanding
    that some Participants such as       will require high level of lifetime supports and who are
   unable to increase their capacity for independent living.

This email offers me cold comfort as, based on my experience so far with the NDIS, there is no continuity and I have no faith or confidence in the agency.

During the 20 month period of the NDIS pursuit of a funding cut for and all of the stress and work that involved, my health has declined seriously. I am 74 years old and cannot withstand another onslaught from the NDIS. I am left worrying about who will advocate for when I die because it seems to me that NDIS does not have any idea about people with complex needs like

2 Note this has nothing to do with NDIS reviewing Plan. It is done via other reporting mechanisms.

• What was it all about?
• Whose idea was it?
• Did anyone benefit?