By bobb |

I sent the following submission to the Joint Standing Committee on the National Disability Insurance Scheme. Then I attended the hearing on 27/3/2015. There is a newspaper report.

Dear sir/madam,

I am Bob Buckley. My interest in and experience with the NDIS are as:

  • the father of a 24 year old son with tricuspid atresia (a health condition) and severe autism spectrum disorder (ASD) who is a NDIS participant,

  • Convenor of Autism Aspergers Advocacy Australia (A4) which is a nation grassroots organisation involved in systemic advocacy for people living with autism since 2002, and

  • Chair of Speaking Out for Autism Spectrum Disorder (SOfASD) in the ACT.

First, I want to acknowledge that the NDIS trial provides many substantial improvements in disability services, both:

  • for my son as an individual, and

  • for most NDIS participants.

I acknowledge that the NDIS trials started very quickly. I appreciate that the NDIS is a challenging project and is improving over time from its initial trial implementations.

Our family's experience with and attitude to the NDIS can be readily seen in a Youtube video that Dougie Herd highlighted earlier this week is his opening keynote talk starting the ACT NDIS Conference.

Basically, I welcome the NDIS. It is a major step forwards for Australians living with disability.

At the same time, I am concerned that community expectations of the NDIS far exceed what Government will deliver, and the NDIS so far is falling short of what it should achieve. My purpose is to offer constructive criticism hoping that I can help improve the NDIS and its outcomes, particularly for people with

The NDIS did not and does not understand autism spectrum disorder (ASD).

  • The NDIA massively underestimated the number of people with ASD.

  • The NDIA does not understand the nature of ASD … so the Scheme fails to recognise and address distinct needs of people affected by ASD.

  • The NDIA's refusal to consult ASD stakeholders, to understand and to address the distinct needs of people affected by ASD has a large cost … for everyone. Refusal to address distinct needs is contrary to NDIS goals and to the NDIS's alleged “insurance model”.

The NDIA's latest quarterly report shows “autism” is the most numerous type of primary disability (28%) among NDIS participants, it even overtook the combined intellectual disability category (27%). This high proportion of participants with ASD apparently surprised the NDIS despite repeated warnings from the ASD community.

The number of ASD diagnoses doubles every five years. This growth is not just in Australia, nor is it related to HCWA (as NDIA officials suggested). This is alarming growth … and is not, to our knowledge, factored into the NDIA's forecasts and planning. ABS data indicates most of the growth in autism/ASD is people with severe or profound disability; it is not due to more “mild cases” as officials usually claim/suggest without any supporting evidence.

The Australian Government has no discernible recognition or plans to address the alarming growth in ASD diagnoses … and the Health Department wrote that it “is not aware of any evidence of any major shifts in prevalence of autism in Australia” (see http://a4.org.au/node/359).

The Government has never funded a national peak body for systemic advocacy for ASD. Unlike numerous other disability types, Government does not and has never funded a national peak body for people affected by ASD. Government funds advocacy with ideology unsuited/inappropriate and at times contrary to the needs of many people with ASD.

ASD is a “spectrum” … that's why the word is in its name. There is a spectrum of need … and representative advocacy must respect and represent the varied opinions/views in the ASD community then espouse diversity of services and supports, or it isn't representative advocacy. Many of the needs do not match current disability sector ideology and dogma … which are popular with cross-disability advocacy groups.

Apart from a few basic numbers, we really don't have much idea about how the NDIS is getting along with ASD. Reporting is minimal. Without data and appropriate measures, our understanding of ASD in the NDIS is based directly on what NDIS participants with ASD tell us.

People are wary of change and many are anxious about the transition to the NDIS.

My family's individual NDIS transition

My son is 24yo. He has tricuspid atresia, a heart disorder (involved 2 bouts of open heart surgery by age 3.5 years) and Autism Spectrum Disorder (DSM-5). His diagnosis of Autistic Disorder was delay until he was 6 years old, and came through a “second opinion”. Initially, the ACT Government disability services were reluctant to assess him; when they did, they concluded he didn't have any disability.

He is an NDIS participants. His NDIS plan is a significant improvement on what he had before the NDIS … but it still falls well short of meeting his needs.

I believe we got special treatment through our NDIS transition … presumably because of my role in ASD advocacy.

My adult son lives at home. He spends most of his time being supervised by his family: his parents and his sister. Our lives are dominated by ASD and the interest of my son with autism. His parents rarely go out as a couple: finding and organising support that would let us do that is challenging. His parents lead separate social lives. We expect our daughter will leave home soon … so his care will be provided largely by his parents. At this stage, we cannot discern any path to our son having a more independent life separate from ours.

My son's family currently provides services and support for my son that would cost well over $350,000 per year to replace. At the ACT NDIS Conference this week, Ms Ara Creswell from Carers Australia said that family/informal carers provide in excess of $40 billion worth of unpaid care per year. The Government and the population generally might take disability more seriously were the value of family and informal care recognised, even included, in GDP reporting. Note, $40 billion is a very conservative estimate.

Our son's NDIS plan mostly funds his day program that “keeps him entertained” through normal working hours. We monitor his program closely … if we don't, it falls apart quickly.

Our son's NDIS plan has a substantial cost, but the cost is small compared to the replacement cost of the care and support he gets from informal carers.

We have no interest in managing money for the NDIS; our real interest is in the service and support for our son.

But adequate entertainment is still not what he wants and needs.

He still asks to go to school. He does not have equal access to tertiary education. His NDIS plan includes case management for that … but we haven't found anyone who actually understands the issues … or could make any discernible progress with the few hours that that the NDIS says it will fund.

We believe that my son would like a regular job. Through his day program, he volunteers in a couple of places. Again, we have not found a case manager who can progress this.

As yet, that is 6 months into our son's NDIS plan, we have not been able to engage a case manager capable of tackling the complete needs of our son.

NDIS reports of Participant Satisfaction

Sadly, I have to say that the NDIA's reporting of high (95%+) of participant satisfaction are deliberately misleading. Hopefully, politicians are not fooled by numbers like that, though I expect the Minister is pleased to be able to mislead journalists and some of the public.

However, I expect this conduct damages respect for Government and the credibility of politicians and officials.

The reported participant satisfaction is certainly not an outcome measure for the NDIS.

NDIS Eligibility

The NDIA's eligibility criteria for autism/ASD are gobbledygook: families and health/allied health professional cannot use the NDIA's autism criteria as they do not make sense. We told the NDIA repeatedly. The NDIS refuses to develop, or even discuss, comprehensible eligibility criteria for people diagnosed with ASD.

The NDIA ignores the part of the DSM-5 that says “The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets”.

The NDIS eligibility and intake schedule in the ACT depends on client lists from Disability ACT. But Disability ACT leaves people who will be participants off its list.

I am trying to help an ACT family whose two adult sons have ASD. One son left school recently and has had an abysmal experience in the disability employment (see http://a4.org.au/node/919). Disability ACT left him out of the post-school programs in the ACT and off its list of recent school leavers; a group, including my son, who were among the first entrants to the NDIS in the ACT. The older son has an Individual Support Package (ISP) but I'm told that in the last transition between service providers Disability ACT lost his paperwork for an extended period … he wasn't accessing many services anyway as his family could not find appropriate services for him, or he could not meet unreasonable conditions imposed by disability service providers. Disability ACT also left the second son off the list of ISP recipients who are meant to transition to the ACT at present. Disability ACT is very careless in leaving one of these sons off the relevant list, but leaving two boys from one family off their respective lists is inexcusable. Disability ACT made the situation worse with an email that said their primary carer would need to die to get these boys into the NDIS before the final intake period for the ACT NDIS trial … the mother asked me if Disability ACT was inviting her to commit suicide. Disability ACT's plan is to offer this family services that simply will not exist by the time their entry to the NDIS comes up.

Early intervention

Families of young child with ASD in the ACT report experiencing highly variable outcomes from the NDIS planning process.

The NDIA chooses to ignore evidence-based practice for autism early intervention (see http://a4.org.au/node/843). I am concerned that Government Departments recently removed expert advice about early intervention for autism from their websites (see http://a4.org.au/node/965).

While the NDIA claims early intervention funds are not capped (see Mary Hawkins' message, 10/2/2015 here) and a few families get minimal funding for ASD-specific early intervention, many families of children with ASD report that their planners insisting that funding for early intervention is capped. Their funding is capped, typically $12,000 per year, and does not provide best or even good practice early intervention for their child's ASD. This is short term cost minimisation; it is not an “insurance model” meant to minimise long-term cost.

NDIS planning outcomes for ASD Early Intervention seems a bit random … depending on the attitude of individual planners, few of whom have the knowledge or experience to make these decision. NDIS planning for Early Intervention for ASD is largely dysfunctional, much worse than pre-NDIS. In this regard, the NDIS is failing quite badly.

There are other problems including.

  • The NDIA has an ideological position that is contrary to evidence-based practice in Early Intervention for ASD. The NDIS rejects the evidence-base developed to support the Helping Children with Autism (HCWA) package (though HCWA's implementation from its evidence-base also fell well short of good practice).

  • Australia has a massive skill shortage in the area of early intervention for autism/ASD.

  • The NDIS needs to measure the effectiveness of the early intervention that it funds.

  • With the elimination of the ACT Government's centre-based service, Early Intervention for autism/ASD in the ACT is likely to be worse under the NDIS than it was before (which was already inadequate).

NDIA's Secret Needs Assessment Tool (SNAT)

The NDIA has a Secret Needs Assessment Tool (SNAT) that it will not disclose, even under Freedom of Information, to stakeholders or the individuals that they apply it to.

The ASD community is concerned about its appropriateness to people with ASD but we cannot assess the SNAT.

Skilled services for ASD

When it comes to services for people with ASD, Australia has a chronic skill shortage. Until recently, autism was considered “rare”. Few if any people were trained to provide services.

Little has been done to grow services and support for ASD given its growth and severity. Graduates from Australian universities are not trained to deliver good practice early intervention for ASD. They are not even trained to deliver the type of service that the NDIA thinks (mistakenly) is good practice for ASD. The NDIA and Government must be proactive on this issue.

Behavioural services are a particular issue. While New Zealand has two Universities that train professionals in behavioural services to an internationally recognised standard, Australia has none (see http://www.bacb.com/index.php?page=100358).

ASD and what is “Accessible”?

The disability sector and the NDIA have a poor understanding of access issues for people with ASD. The existing access standards and provisions completely ignore access issues for people with ASD.

Many people with severe or profound ASD cannot travel safely on public transport or in taxis. This means that people with ASD depend completely on family and/or informal carers to access their disability and mainstream services. In other words, transport is a basic access issue and many services are effectively inaccessible for many people with severe or profound ASD.

Many people with ASD have sensory issues that make many services and events inaccessible for them.

NDIS planners, and even disability advocates, have variable or limited understandings of access issues for people with ASD. So NDIS planning outcomes are quite variable with regard to service and support access.

Engagement with ASD stakeholders

The NDIA's engagement with ASD stakeholders has been minimal at best.

From the outset, ASD stakeholders told the NDIA that it was badly under-estimating the number of participants with ASD.

The concerns about NDIS planning process not being suited to ASD were ignored. The Government has done nothing to address the shortage of ASD skill in the workforce.

It is worth noting that despite ASD (28%) now being the biggest distinct primary disability in the NDIS, even bigger than Intellectual Disability combined (27%), the Government continues its refusal to fund any national ASD peak body. Instead, the Assistant Minister claims that his cross-disability Alliance represents all people living with disability.

Let me assure you, his Alliance does not represent most people whose lives are substantially affected by ASD … not even close. Most people diagnosed with ASD have severe or profound cognitive and communication disorders; they simply have not and cannot participate in Alliance member organisations in their current form. It is worth noting, the Alliance members represent ideology, and they are often critical of their community when the community finds ideology is impractical and wants/expects pragmatic approaches. It is important to promote ideology but it should not replace the practical need of the disability sector.

On the other hand, organisations that have experience including people with these disabilities, as well as family members, in their administration remain unfunded (e.g ASD, Down's Syndrome, …) or were defunded (now functioning with some interim funding).

The NDIA needs to engage ASD stakeholders. For example on Monday, Bruce Bonyhady told the ACT NDIS Conference that the NDIA is developing several planning packages, including one for “autism”. To our knowledge, the NDIA has not consulted any ASD stakeholders on this development. There is no discernible sign that it intends to. We can only conclude that the NDIA had a major disregard for ASD stakeholders.

Our experience with the NDIA failure/refusal to engage ASDS stakeholders has been extremely disappointing, given our relatively recent and positive experience with the HCWA development and roll out.

Disability Research

Not enough funding goes into disability sector research.

Other issues

There are many other issues that deserve attention including:

  • safety of people with disability when in the care of a service

  • Tiers 0 through 2 of the NDIS

  • linkages with mainstream services, especially education, health and employment

  • human rights.