Good afternoon. I am here to speak to you today on behalf of my son Matt

who is 28 years old and lives in a government owned group home at

Wauchope just west of Port Macquarie.

At 2 years of age, Matt was diagnosed with autism and global

developmental delay.

He is physically ABLE to speak but is non verbal because he doesn’t

understand what language is about.

He is uninterested in, even hostile towards, augmented communication.

He cannot communicate his CHOICES, thoughts, needs, likes and dislikes,

or what has happened to make him upset.

Therefore his behaviour is extremely unpredictable and can quickly turn to

frustration, agitation and then aggression, if not handled well.

Matt does not understand cause and effect so his behaviours can be

spontaneous and yet also rigorously persistent. Punishments and rewards

are irrelevant.

Matt is part of a group labelled “Autistic” and yet he is highly individual.

We cannot have a “one size fits all” approach to disability, not even to

intellectual disability, because there are some who will always fall through

the cracks with this kind of thinking - and I don’t want my son to be one of

them.

When the NDIS covers all of NSW, it will have the state’s ENABLING ACT

piggybacked onto it. This Enabling Act has linked the NDIS with a sell off

and a sell out. The state government is doing a “Pontius Pilate” on our

most vulnerable.

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Every single group home in NSW is to be handed over to Non Government

Organisations and the Department of Aging, Disability and Home care –

ADHC -will cease to exist.

Which government department will there be, to support and deal with

issues relating to people with disabilities?

As a lay person, much of the enabling act was difficult for me to

understand but one part I did “get” was

Object (c) to provide for the transfer of disability services assets to maximise the

capacity of the disability services sector and ensure continuity of service while

achieving value for the State.

“to maximise the CAPACITY” – not the quality

“value for the state” sounds like a euphemism for cost cutting.

The NDIS will undoubtedly be a positive step for many people in our state -

for those with physical disabilities, for those who can speak for

themselves, for those who need basic levels of care and most importantly

- for those whose behaviour is NOT a leading issue.

The problem with Matt is that he needs much more than “babysitting”, he

requires expert management.

Yesterday we were told that 90% of people in the Newcastle trial area

were happy with the NDIS. That’s great, but what about that other 10%?

We can’t just sweep them under the rug, they matter too.

There is a lot of rhetoric regarding “choice” and “control” for everyone

under the NDIS.

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However, in the real world, there are a small but significant number of

people with intellectual disability for whom CHOICE and CONTROL are

simply not a possibility.

An acquaintance told me of an advertisement they saw for a job in a

privately run group home. The requirements were – a driver’s licence and

the ability to work shift work.

In a few words, this says a lot.

Handing the care of people like Matt to anyone but properly trained staff is

a recipe for disaster.

While privately run homes with unskilled staff may work adequately in

many cases, the people with the highest psychiatric and behavioural

needs cannot and should not be handed over to people with minimal or no

training and experience in this area.

People with hard to manage, complex behavioural issues don’t act in the

way they do because they make conscious choices about it. The behaviour

and aggression are part and parcel of the disability and are not born of the

mindset by which they will be judged by most people.

Those with severe intellectual disability and behavioural issues don’t

usually live in group homes as a matter of independence. They are there

because the physical and emotional strength and age of parents are on

the downward slope.

While Matt’s journey into living away from home has not been easy and is

still fraught with ups and downs, it HAS been one of caring and progress.

This is due to the expertise and commitment of the staff and this has

developed through career level training and years of experience.

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But quality people will not stay where they are undervalued and accept a

substantial pay cut. Lower wages will result in staff with poorer expertise.

Matt’s behaviour, while not perfect, has improved greatly because of the

programs and skills in place. In 8 years, he has gone from a level of over

20 incidents per month on arrival at the group home, (almost 1 a day)

down to 2 per month.

The incidents have also decreased in severity. He has acquired skills - he

is learning to recognise some emotions and his sensory tolerance and use

of words have increased.

This improvement is a tenuous thing and Matt could easily revert to past

behaviours if he is not handled appropriately.

Matt’s life at this house is one akin to family, because not only are his

needs for food and shelter met - it goes beyond that. He is taken for

regular medical and dental checks, including to the closest psychiatrist - in

Newcastle, a 500km round trip.

Matt is not interested in clubs or movies or dining out but he IS brought

home to visit us.

It can indeed be called a group HOME.

Speech Pathologists, Occupational Therapists and Programmers have

constantly been accessed through ADHC. Through these professionals,

Matt has received a lot of input in regard to acquiring sensory materials

and behaviour programs. These things have introduced improvements in

his behaviour and quality of life.

Matt’s Occupational Therapist recently put in a submission to construct a

therapy garden. The money purchased materials and Matt’s father

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supplied the many hours of work to build it, outside Matt’s living area. This

is now a beautiful, tranquil, calming place for Matt to access.

Another small room adjacent to his living area has been converted to a

sensory room and Matt uses this area daily to de-stress and relax. He has

access here to specific equipment recommended and sourced by

therapists. It is a critical component in his behaviour improvement.

I wonder if an NGO will just view this room as a potential further bedroom

to increase their income.

Expert groups like Sydney Behavioural Intervention Support have been

brought in to help develop plans for Matt’s behaviour and the safety of

himself and those around him. ADHC has safety nets that reach far and

wide and experienced staff know when and how to access them.

I fear the changes on the horizon, when Matt will become a client (and as

some may see it – a cash cow) rather than a vulnerable person with very

high needs.

NGOs be they business or charity are run to generate funds. Charities

don’t want to run at a loss and companies are pure profit making

enterprises.

So what goes when they take over?

The quality and the quantity of

Staffing

Food

Power - Wauchope is hot in summer and cold in winter.

Transport - Will we need to take Matt to appointments ourselves?

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Our experiences with NGOs to date relate to Matt’s Day Program.

Matt is on the top level of funding for his day program with a ratio of 2

workers to one.

He was expelled from his first day program because the staff could not

control or deal with him.

The second Day Program provider was reluctant to take Matt, but finally

agreed to, if a new vehicle was supplied for him. Once they got the

vehicle, they got rid of Matt.

The third provider decided after many meetings, that they could not

accommodate Matt in their program.

He lingered for a long time with no Day Program.

How frustrating for a young, active man - and how unfair. What quality of

life did this afford him?

We were initially advised that ADHC was not authorised to provide “whole

of life” care - but after lobbying - they eventually agreed to undertake

Matt’s day program themselves - with the house staff running it as a

separate entity to his accommodation. All has gone smoothly since then,

because these people are professionals not just minders.

Things seem to be going well for us at the moment – but my worries are

*If NGOs cannot manage to cater for Matt for 4 hours a day, 4 days a week

with a 2 to 1 ratio – how are they going to provide a quality life for him

24/7?

*Will Matt cease to have a Day Program again when ADHC is disbanded ?

*Will Matt have to pay for therapists and planners (who will then be

‘compartmentalised’ and not working as a cohesive unit)?

*Will NGOs take a larger proportion of Matt’s pension towards their

running costs and leave him little for his personal expenses? As well as his

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day to day needs, the cost of a phone line and package for his beloved

internet is something he cannot cope without. He would have a total,

unending meltdown.

*Will NGOs provide Matt’s medical related transport, or will he be

expected to pay for this?

Perhaps Matt’s father or I can risk taking him a short way while we are still

able to drive – but where are we to find a vehicle to do this with safety?

The vehicles at his house have specifically designed security netting fitted

to protect the driver if Matt becomes agitated, as well as windows and

doors that Matt cannot open to escape.

Governments look at the quality and safety of a service, NGOs look at

profit.

The word CHOICE is being used a lot in relation to the NDIS.

The fact is that under NDIS there will be no true choice with

accommodation.

If you currently live in an ADHC home - you cannot choose to keep this

service because ADHC will not exist. You will have no choice about which

private provider will run the house you are in. If you choose a different

provider you will have to move.

Waiting lists for Group Homes are long and no NGO will be running to the

front of the queue with their hand raised, yelling “pick me”, to take on

Matt or those like him.

What accommodation choices do people like Matt actually have apart from

TAKE IT OR LEAVE IT.

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The most hard to manage people, who require the most expert staff, with

the greatest accountability for all their undertakings and actions should be

cared for by the government.

Governments traditionally give employees security - and pay trained

people a wage that will continue to assure their services.

Governments look after people without a balance sheet being the entire

focus of their commitment.

I believe governments have a social and moral obligation in this area.

It has been said that the morality of a government can be judged by the

way it looks after its most vulnerable citizens.

How does our state government rate in this test, when it deems that the

aged and disabled of NSW do not even deserve a government department

or a minister to represent, support and protect them?

The Disability Inclusion Act – Schedule 5 - could be viewed as a - “3

strikes and you’re out “ policy for clients.

I can envisage many NGOs using this to get rid of the hard to manage

clients to make their houses easier and more cost effective.

If Matt is refused a group home place because of aggressive behaviour –

where does he go? Who is the provider of last resort in this plan?

I fear about Matt’s future.

Some NGOs such as Anglicare hold similar fears and are asking many of

the same questions about clients with what they call “behaviours of

concern”.

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They worry about adequate funding to employ staff with expertise – and to

cover hidden costs associated with “behaviours of concern”. They describe

“cherry picking” by providers to avoid clients with behavioural problems

and they wonder who are the providers of last resort and how will they be

funded to support the hardest to manage cases.

When NSW dismantles ADHC, which government department will preside

over and protect people who cannot understand or speak for themselves?

I DON’T WANT MY SON TO BECOME BUREAUCRATIC CANNON FODDER.

In the early 2000s some complex clients were put out to private enterprise

but within a year, ADHC ordered most of them back under Government

Disability services because –

Service provision was low quality

and the cost blew out so the state could not afford it.

Why do we keep repeating failed policies? Isn’t the definition of stupidity –

doing the same thing over and over and expecting different results?

Here is a comment I found relating to privatisation in Britain -

There is clear evidence that privatisation and outsourcing aren't working. Publicly owned services aren't always perfect, but they tend to be better quality, lower cost and more accountable. Private companies are great at making lots of things – from soya lattes to laptops. But it's misguided to hand them natural monopolies. Especially when they involve giving time and care to meeting people's basic needs. In the 21st century, public services should be about people, not profit.

In my experience, the ingredients that come together to make things work

for Matt are

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1. Carers with knowledge and experience.

Most of the staff who currently work for the ADHC home where Matt lives

have made this work their career. Many have completed 3 or 4 years of

tertiary study and 4 of them are ex psyche nurses. They train new staff

coming into the house. They are familiar and COMFORTABLE working with

people like Matt.

2. Programs developed by experts with everyone on board –

This is achieved through having a network of professionals available

through one place - ADHC, working together with regular meetings and

discussion and a team approach.

We are happy with Matt’s present accommodation and the way it is

running. We are constantly monitoring, meeting and discussing - and

things are coming together well for Matt at this point in time.

While ADHC may not be perfect, it remains the best situation we have

experienced, because the people in its care are not simply numbers on a

profit line but citizens under its protection.

OUR choice would be – “If it ain’t broke, don’t fix it”.

In the new NDIS world in NSW, I think that many people with disability will

probably benefit.

It is the comparatively smaller number of square pegs that I worry about

because Matt has always been one of them.

Thank you

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