Special report expected to shake-up Australian disability service provision.

This article was in the Brisbane Courier Mail today....

Even though this issue is seemingly out of control and people obviously need help now in Australia, instead of the 2014 expected date of implementation for the NDIS.... I can't help but turn my thoughts to those countries that do not have the voices or the means to inform the world of the everyday plights of the disabled.

Yes I am an avid supporter of "Every Australian Counts".....

But I also believe that "Every Disabled Person...where-ever they may be...

counts too!" 

Special report expected to shake-up Australian disability service provision.

Paddy Hintz 

From:The Courier-Mail

July 30, 2011 12:00AM 

WITH two teenage sons with autism and a range of other disorders, and a wife whose spinal condition keeps her bedridden, Mark Styles, 47, carries the burden for his family.

Now the stress is getting to him.

"He has attacks that mimic a heart attack and each time they happen he has to go to hospital just in case," his wife Gayle, 45, said.

"It's been brought on by the stress. He just needs a break.

"But that isn't possible. We can't qualify for respite care because we have an 18-year-old son. But that 18-year-old son has autism."

The Styles said they had applied almost 20 times for funding through Disability Services Queensland and each time they're told they qualified but no money was available.

"Only one in 33 people in Queensland who applies and who is eligible for funding gets it," disability services advocate Fiona Anderson said.

Saturday night the biggest shake-up in the history of Australian disability service provision is expected to be recommended by the Productivity Commission.

Aimed at fixing the wrongs of care provision which has been "underfunded, unfair, fragmented, and inefficient", the report into disability care and support will recommend the establishment of a $12.5 billion-a-year National Disability Insurance Scheme.

The scheme, mooted in a draft report released earlier this year, and a parallel National Injury Insurance Scheme are expected to cost the Federal Government $6.3 billion a year.

The commission says this could be funded by cuts in spending and tax increases.

A new statutory body, the National Disability Insurance Agency, would supervise the schemes.

The changes are likened in scale to the introduction of Medicare but disability services advocates are concerned the Federal Government, committed to returning the Budget to surplus in 2012-13, will baulk at the cost.

Endeavour Foundation chairman David Barbagallo says he hopes the Productivity Commission does not understate the urgency for a disability scheme tomorrow night.

"The current system is locked in a death spiral," Mr Barbagallo said.

"Sadly, there are lots of instances where people are faced with the alternative of abandoning their family members to the state as it's the only way they can get help."

TIME FOR INTERVENTION.

TIME FOR INTERVENTION.

When you find yourself fighting with your child over irrational, unimportant things (e.g  a Milo Tin).... you know it is time for a INTERVENTION.

Time to take stock of what your body and mind is telling you.....  

and in my case tonight;

- nearing the 8th day of very minimal sleep - yes the youngest is still suffering from his head cold.

- not having my usual Respite help of a few hours through the week - due to the snot monster!

- not getting my usual 1 hour walk in each day to clear my mind, energize and help to deal with everyday stress.

- Tradies (tradesmen) early morning calls, constructing, not finishing and rescheduling.

- Rushing to and from Doctors and Chemists... trying to find some way to help alleviate the head cold my youngest is suffering from, which has turned into a 10 day nightmare.

-Staying on top of the extra household duties required when you have sick kids.

-Study.

-Home duties... again, with the snotty one, which can I say is a very draining exercise.....

no wonder why I am fighting with my eldest son over ridiculous things, 

snapping and feel so irritable. This afternoon, all of those things accumulated, I exploded and basically, had a TANTRUM.  Sick and tired of the work load, lack of sleep, constant demands and unwell kids..... I lost the plot!  I was cranky... nagged, complained.... I am honestly surprised I didn't throw myself onto the floor kicking and screaming.  I was acting very much like a "terrible toddler!"

Now I am certainly not proud of my display this afternoon and Yes... the mother

guilt is kicking in.  But I guess after I had apologised

to my eldest son and realised how ridiculous my actions were.... I think 

I immediately knew I needed to do something to change my mindset.

When you are stuck at home with a sick child, you just do not get a break. I had tried to Meditate through the week.  Tried to complete a Yoga and Pilates DVD ... just to steal 15-20 mins for myself. Tried to re-centre my thinking and strength.  Tried to get some relaxing time on my day bed reading a book. But in the end, all of these things failed... 

obviously, hence the tantrum.  

Now I am very aware that with the youngest still too unwell to return to school tomorrow, and the weekend looming. With no help or respite in sight until Monday and more tradies to finish the mess they started, early on Saturday morning - I needed an action plan. Just so I will be able to cope with the weekend ahead.

Contemplating my options; In hoping those tradesmen will do a fast efficient job... was just a pipe dream!  Sleeping in or catching up on sleep was a possibility, but if the past week was anything to go by, a low chance of this occurring.  A few glasses of vino at night to help relax the mind and soul, could be good choice, but in honesty, will only result in a very prolonged hang-over. I think really, simplicity is needed here.  After a heart to heart chat with my eldest just about the difficulties one faces when parenting on their own. When trying to be everywhere at once and achieve the impossible all the time, discussing the fact that it is no-one's fault.... life sometimes throws challenges our way, that is to be expected. We both came to the conclusion that I need to ask for help.  

I loathe doing this.... it goes against all my STUBBORN views of

"I can do this.... I need no help.... I've got it under control!"

But when the above views, begin brewing stress and anxiety in the home... something needs to change and really let's face it....we all need help at some point.  

Thinking of some very wise advice from friends, my son and I sat down and chatted about some ways in which I could "relax".  This was such a

huge moment... coming from my Asperger's child. Recognising that I have needs and then problem solving, how my needs could be met?

WOW..... he really is growing up.

I can only hope and pray that these moments are etched into my son memory when he is faced with a similar challenge.

SELF CONTROL VS ASPERGERS

SELF CONTROL  VS  ASPERGERS.

For the past few months I have been struggling to guide my eldest son in recognising personal self-control. His Aspergers traits unfortunately heighten obsessive behaviours especially with technology. Now in the past the way to deal with "too much screen time" was,to take it off him or give him a boundary....like one hour a day.  This would work for a short period of time, but would eventually lead to an even greater obsession with thinking about and wanting "screen time". It would escalate and most of the time result in arguments, constantly challenge me over boundaries - every moment of every day.  You see my son is very much like his father.... and has inherited an addictive personality. But instead of offering him  a "not at all" approach, I feel he can be taught personal boundaries. I plan to guide him and teach about listening to what his body is saying and recognising when he needs a break from a "screen" or the activity that is monopolising his thoughts.  
Our psychologist has informed me this is something children with Autism/Aspergers find extremely difficult, nerotypical adolescence's too. Listening to and reading body language...especially their own needs to be taught. Problem solving feelings and emotions, then realising the need to relent and give up what they want to do.... remember typical thinking is "all about me," is difficult. Strict boundaries and routine is needed and my son will always struggle to learn such a thing.

Ahhh! .... rising to a challenge. I certainly do not believe nor ever will, that I cannot teach and raise my children with personal boundaries and limits, as well as learning responsibility for their actions, and they will not be successful.  I feel that these qualities are fundamental to moral human behaviour.  I believe that if I take things in small steps, over a period of time, that eventually.... yes these qualities will just become a part of who they are. It won't be second guessed or challenged. It will be another part of their personal development that like grooming or making good choices with food etc ...it will just come.

The challenge I guess is how to do this. I have tried so many different ways. I have not been nagging my son lately to take time away from a screen or limit an obsessive behaviour, instead opting to just watch from a far, not saying anything. Just to see I guess if he is showing any signs of recognising that he maybe getting a headache, or maybe feeling hungry, or anything .....   Luckily, the signs are there, but far from fine tuned. My son has been learning Taekwondo since he was 6 years old. He should have "Self-Control", as this is very much integrated into his training.  He needs this if he ever wants to get to black-belt level. A goal he is currently aspiring to. So I guess the question I am asking myself..... is he capable ?  Definitely!  It would be wrong to think otherwise. It is just the how... that is the problem.  I don't believe this is something that is a quick fix for him....but instead something that will take time to develop. I have to also consider the fact that he is an normal adolescent too, and a lets face it...adolescents challenge boundaries and fail to hear the common sense in a decision made by their parents. As the saying goes.... I say "No" which somehow this translates into "Yes" ....in their minds.

I have done some self-evaluation... looked at my own behaviour to see if I am setting myself limits ?  And "yes".... most of time I do. I am only human though and none of us is perfect 100% of the time. There are moments when I am "off my game", and that is O.k.  because I generally reel myself back in fairly quickly. So I feel I am displaying appropriate behaviours for him to model off. I have tried to assimilate examples to explain why listening to our bodies is important, using examples of food - too much chocolate, the consequence - huge effect on our health and feeling unwell or reading books in cars resulting in feeling car sick. But am yet to strike a chord with my son re: technology. I am careful not to prohibit screen time as it is very much a part of his education and the future for that matter.... but am striving towards a balance. A balance between responsibility - work - rest and play. 

We have a few ground rules set into place at home. But I have passed these off as a need for my youngest not the older son. He seems to be more accepting of them this way. We have no gaming systems until the weekends, that way the distraction is not there throughout the school week. We have used a colour coded timetable to show how much screen time is available if time is used wisely. Time management another area which seems to test my eldest. Then no screen time, to focus on organisation - getting ready for school etc and then no screens for a set period of time before bed. This way the mind can slow down and relax. When screen time is available; it is organised around responsibilities first...such as homework or assignments. But I think the area where I am struggling right now is when there is available screen time with no boundaries.... he is only doing this activity ... nothing else.  He is failing to pull himself away from his computer, recognising that he needs a break or is starting to get a headache or his eyes are getting blurry or sore, from looking at a screen for long periods of time. Previously, I would be the nagging voice in the background, constantly reminding him of such things.... but when that failed and only seemed to spark an argument... I needed to change tactics. So for now I am taking pride in the fact that we are using the colour timetable and I have no resistance at night, to pack the "screens" away. I have kind of worked out with my son that nagging gets you no-where and tough-love gets you no-where. The key to this child, at the moment, is striving through routine, independence and praise. The more responsibility I give him and less instruction (nagging), seemingly fosters the behaviour I am looking for.  But it is very slow, tedious and inconsistent. 

It can be difficult as a parent, as you just want your child to "get it" and get it quickly!  this will in hindsight make our lives easier right?  This is especially so if you are a working parent or have other siblings with needs. Our kids get to an age... where I think you just expect them to understand, to mature and grow-up. I mean that is what happened in our childhood.  But I know Aspergers and Autism, is a life long challenge. Most of the time these kids will just "not get it"/ "not get the obvious !"  It certainly doesn't mean they aren't smart enough too, it is just the way their brains are wired.... differently.    

As I am striving towards an attitude of....

"the only thing one should expect is the unexpected and that you will deal with whatever is thrown your way..."   I shouldn't assume, but instead seize every opportunity to guide and assist where needed.  That way when something unexpectedly wonderful does happen with my boys... it is more of a celebration rather than a case of;                          "....that's another thing I HAVE to do.... creating pressure and negativity... on my mindset."

I think when you are a parent of a child on the Spectrum, you need to be constantly evaluating and self evaluating, problem solving and striving for what is seemingly the impossible. We shouldn't be afraid to raise the bar for our kids ..... they deserve that right. It is really up you, the individual parent, to make the right choices about personal qualities or morals you feel, are important for your kids. Remember just because they may be on the spectrum, doesn't mean that these behaviours, as abstract as they are, can not be achieved.  They are often over-looked as many specialists and you will be told they are not "survival" skills.....  but.... even though it is good to listen and reflect on what you are told.... it may not be the right information for your family. So please.... yes go and seek support, but be objective..... and take the time to really think about what your parental instincts are telling you.... what are your beliefs and what personal human behaviour do you feel is important to have in life.

“Every man, at the bottom of his heart, wants to do right. But only he can do right who knows right; only he knows right who thinks right; only he thinks right who believes right.”

Tiorio