We are Worth the Investment. NSW Council for Intellectual Disability Conference 16-17 July 2015. People with complex needs, Lyn Clinckett, Parent

1. 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.
1

2. 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.
2

3. 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.
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.
3

4. 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.
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.
4

5. 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 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.
5

6. 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?
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.
6

7. 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 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?
7

8. 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.
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.
8

9. 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”.
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
9

10. 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.
10

11. In my experience, the ingredients that come together to make things work for
Matt are
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”.
11

12. 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
12