27 November 2008

Speech therapy ACT not up to standard

| mitcore
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Hi all I am mitcore and I have joined this group to see if I could get voices to help make the goverment stand up and listen to the shortage of speech therapist and other specialist in the area.

We do not have enough, I am going on Stateline to voice this opinion and to get help for my son, who is very delayed and unable to talk.

I am not to sure on what to do about it, I would like some help to make the ACT goverment listen to us as parents and as career of special need kids,

Please give me your thoughts and opinions on how we can achieve the best result

Thanks all.

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thanks, will do,

Good luck with it Cathy. Let us know how it all goes.

I think the therapists will be cheering for you.

i thought it went well,
now we wait to see what happens, i go the ACT therapy with dylan tom, I am hoping they dont hand me my butt,
LOL fingers and toes are crossed

Terrific – thanks Fiona!

I managed to miss Stateline on Friday and so haven’t event STARTED my letter to the Minister for Health.

Tonight, for sure! =-)

Hi Carmel, saw on this week’s Stateline that you had a meeting with Katy Gallagher, hope some good came from this!

Ok, great thanks, Cathy!

: )

hi carmel, sure no problem, i saw your one as well,

granny they are re running the episode tom, i think at noon,
on ABC1 set top box and ABC for normal telly

November 28:
Gift of speech.
Fast young women.
Dying art of piano tuning.
The Colour Red.
ABC1 FRIDAY 7.30PM. Sat Noon.

they havent up loaded it yet, have a look tom and from the above i am assuiming it is a re run

HI Cathy

Saw you on Stateline tonight

I appeared the week before on the sppeech therapy issue. I will get your details off Stateline and get in contact with you

thanks granny i am waiting also for it to hit the site
thank you for waiting just to see me it means alot

true, i was more embaressed about them showing my non renovated back yard, LOL why not the front it is much nicer LOL

it turned out well though i was happy with it and dylan was great

it was the way i would have liked it to have gone

Well, we were watching the wrong thing it turns out, because it wasn’t on the the one we were tuned in to.

I’m so disappointed to have missed it – I never watch telly and I was watching specially. I’ll have to wait for the footage to go up on the website.

*sigh*

I’m so glad it went well, though, and I’m now more impatient to see it than ever!

Congratulations, Cathy!!

: )

thanks you
i was blushing the whole time

i missed the start.

you were great, but they could have explained a bit more about the lack of access to public and private specialists in the ACT

It went well i thought

what did you all think?

I agree with Soolin – what a lovely little man. I hope that help comes very soon to you and your son.

Cathy, you were brilliant! You are very lucky to have such a lovely boy as Dylan, he seems very receptive to learning. I hear your frustration on wanting a diagnosis and not knowing whether it is a long-term issue. Now I’ll get writing and hopefully get our kids some help right now!

mitcore said :

Fiona said :

http://www.actlabor.com.au/Documents/Policy/Disability%20Policy.pdf

this one

I haven’t actually looked at it I am ashamed to say, but I think that is from ACT Labor, not the Rudd government.

nope still cant find it poptop, i did what you did and nothing

you are truly special with the google magic LOL

thanks, i could get the video to run through the stateline web site

The Stateline feed?

Teh Google skillz – I haz them!

I think I googles “Speech . . . Therapy . . . Canberra”

Stateline came up as Number 5, just below this discussion.

there was

Mr Evil said :

Of course, Labor will say that nothing is wrong with the current system, that the sun is always shining, and all flying pigs have been accounted for.

Fiona said :

http://www.actlabor.com.au/Documents/Policy/Disability%20Policy.pdf

The ALP election promise

Was that a core or non-core promise? 🙂

this one,
also how did poptop find that story i ran a search and couldnt find it?

Although it’s a State (or territory) issue, I have been disappointed in the Federal Labor response. Bill Shorten was on Q&A a couple of months ago saying that no child should miss out on help, even if their delay does not have a name. I wrote to him, nothing. No response at all.

Whch promises in particular, mitcore?

You know i have been sitting here thinking and yes it hurt LOL a thought occured to me, if our goverment is not concerned about our special need kids then what does that say about our future as a country, i would never have thought our children would not be looked after we have the services why not use them? our goverment should be investing in our future not on crude like they have been, wouldnt you think the future of our country was more important,

and then there is this, i voted mr rudd in and he has let me down, labour has also be the one for me, next voting i am not voting labour if they cant do what they say then i want them out

poptop how did you find that story?

LOL i am more nervous now, i think i am the only one, so the 5 min will be of me,
2 hrs geee LOL

but they are right the system needs to step up and play ball, not just pass it around,
dylan is not austic as you will see he is very different from those kids on that episode,
my name is cathy, LOL i may as well say it you will all find out soon enough LOL

Wow! What fantastic women!! Can’t wait to see your segment, mitcore!

: )

Yes Poptop, I’ve had the standard brush off response in the past, maybe this time it will be different. I’m sick of hearing that basically it’s the community’s fault because there are more kids who need help… the government need to step up to meet the demand.

(Poptop I mean!)

*chuckle*

I hope you don’t turn green and burst out of your clothing or anything!

it sure is,
ACT therapy needs to step up and help these kids not just play pass the blame,
i dont believe they will, even after tonight story i am sure they will continue down the “we have long wait times” crude,
they need to asses the kids and go from there,
i know this is personal for me, as my son is suffering because of them, but hey what about our special need kids,they say they care but do they?
dylans griffith test report was sent to them and i have heard nothing about it, they are suppose to pay attention to the griffith test, but in my case it has gone unnoticed which is crude, total crude,

Let’s take photos of the responses from the Minister and post THEM! (with names and addresses blocked out of course)

If we’ve been flicked off with a standard response, I will be very disappointed.

They won’t like it if I’m disappointed . . .

I’ll have a letter done tonight, it’s an issue of vital importance for our children

sounds like a plan,
the more we have the more we get heard,
I am sure the polies little boys are watching this site anyway, i believe they would want to know whats going on in here, so they are probably already aware of this thread and many others i would say

I was disappointed on Stateline last week that the Head of Therapy ACT was quick to blame the long waits on increased demand… well sure, but that doesn’t mean the demand isn’t genuine, and it’s not a reason to make those in need go without!

Ok, we need to post once we’ve done our letters perhaps?

LOL i am going to be writing to,
i am sure after seeing me they will be tired of me also,

my cousin’s grand father was trevor kain, dont i wish he was alive now, i could of had inside help

Thanks Poptop, will do! They’ll be sick of hearing from me by now, but something needs to be done!

Hey Soolin,

I hadn’t really thought about us doing the single letter campaign.

I’ve done my share of responses to letter campaigns in my time and, if we all use the same letter, the bureacrats only have to draft a single response. If I’m going to spend my time and 50c, I want a personalised letter dealing with the issues that matter to me [goddammit!].

My advice would be to watch Stateline and then write in with your opinion on the situation, your concerns, and ask Minister Gallagher what she is intending to do about it.

If that doesn’t work, we escalate . . .

The microbus sounds like cool fun, but it might have more impact to have more meetings with less people at a time. But I’m up for writing! Those interested in plotting and scheming at the Yacht Club in the near future should email granny1963@gmail.com and I’ll get you added to our list.

: )

It’s always hard to see yourself on television, but it will be fine. You’ll be great! Did you see last week’s Stateline? There were two women with autistic children who couldn’t access speech therapy. They came across very well.

Thanks, it will be weird when the show is over you guys will know what i look like LOL and dylan, no hiding in canberra if 42,000 people watch it,

the count down has started
and the nerves are getting worse

i am happy to stand up and tell the goverment off, i am just not sure what parts are going to be aired they did 2 hrs of filming, and the interview went for 1/2hr, i am hoping it is a variety of what i said not just the questions i answered about my son,

i wanted to make sure i spoke about all special need kids not just dylan,
so here is hoping it is about that too,
stateline is sending me a copy next week which is lovely,

if the list on the stateline website is correct in order then my story is first,

Hi Poptop, are you all writing the same letter? I’ve written before, but will write again if it’s a campaign!

Mitcore, the Stateline people WANT the story to be good and so will do all they can to help you get your story across.

Granny, so if you, mitcore, aronde, berraboy and me write to Katie, we might get some action?

“You know, if one person, just one person does it they may think he’s really sick and they won’t take him. And if two people, two people do it, in harmony, they may think they’re both faggots and they won’t take either of them. And three people do it, three, can you imagine, three people walking in singing a bar of Alice’s Restaurant and walking out. They may think it’s an organization. And can you, can you imagine fifty people a day,I said fifty people a day walking in singin a bar of Alice’s Restaurant and
walking out. And friends they may thinks it’s a movement. . .”

I think we need a microbus.

=-)

I’ll be cheering for you Mitcore! Thanks so much for being brave enough to do this. I’ve been letter writing like mad, you’re not alone in this, it just feels like it sometimes. Can’t wait to see Stateline soon, you’ll be great!

She’s apples, mitcore!

: )

Yes, I’ve heard something similar Poptop. I’ve also heard that one politician said that just three letters would be enough for him to act on! Amazing!!

i am just thankful for the help to get this issue known, i take it members on here will be watching for this story,

LOL nerves are bad things, LOL
i am nervous really nervous and i cant wait to see the story go to air

The numbers people in political parties have a formula about such things. Something like one letter from a constituent equates to [erm] 40 people caring about an issue.

I can’t recall the various formulae, but it makes letters and petitions worthwhile, particularly in a small jurisdiction with a minority government.

That’s a great idea, poptop!

I have heard that a personal visit carries the most weight, followed by a written letter, followed by an email.

But an email is way better than nothing!

I have done the interview already and then i found this forum LOL it is to be aired in tonights show, they came on wend this week and did the shoot,

Given the level of interest from event this small group, we should also look at either a petition or letter wrting campaign asking the government to increase the provision of speech therapists in the ACT.

Straight after the TV coverage is always a good time to get some action from the community.

Mitcore, if you get a chance in either interview, ask the Canberra community to write to Health Minister Gallagher supporting your call for more therapists in the ACT.

Oh, done like a dinner BerraBoy68! Cool email!!

: )

Well, I am checking, checking, checking and still nada. Are you sure you’re sending it to the right granny?

berra i am happy to talk to you through e mail, LOL i realised i said nope
i am nervous about the show tonight,
i would love to talk to you through e mail berra

nope it is fine berra i am looking forward to meeting you all too

i understand that, i am going to be on stateline tonight, i have a spot on there,
i had Catherine Garett and her camera crew here on wend this week doing a 2 hr shoot about dylan and his story, it is going to be aired in a matter of hrs,

as you can see pmcb i have already gone to stateline, my next step will be sunrise,
canberra based or not they are able to have things done no matter where you live in australia,

This is so exciting for me. I had no idea there were so many Rioters with similar needs and experiences. It is really encouraging.

mitcore – looking forward to meeting you at the next meeting of granny’s group.

I’m also sending you an e-mail via Granny (hope you don’t mind Granny) that may help.

FYI mitcore, last Friday November 21st, 42,000 people in the A.C.T watched Stateline.
That same morning 14,000 people in the A.C.T watched Sunrise.
If you want the local politicians to hear your story, then Stateline is the place to tell it.

FYI mitcore – last Friday November 21st, 42,000 people in the ACT watched Stateline.
That same morning 14,000 people in the ACT watched Sunrise.
Clearly Sunrise has a bigger audience nationally but if it is the ACT politicians you want to know your story, then the ACT Stateline is the place to tell it.

Thanks, i am not sure what else to do, i have done the stateline interview which will be aired tonight at 7:30 on the ABC and i sent out the e mail to primes sunrise,
I am at a bit of a loss trying to find ways to get this system fixed,

if i am lucky sunrise will catch this and hopefully will go with it,
stateline is good but they are a smaller fan based tv show, sunrise on the other has a bigger fan base and they are well known for getting things done,
my thought is only time will tell if anything is done to fix it,

i would love your help poptop

I hope you can make ‘early intervention’ more than just rhetoric for Dylan and other kids.

If you need any help, just yell in our direction, mitcore.

Thanks granny and poptop
I have also now sent an e mail to the sunrise team on prime, i am hoping the run a story onit through their roswall, not sure if it going to go ahead but i guess we can see, LOL i hope the polies take notice, maybe then they will do something about it, i am so thankful for the support on here, all of you have been great,
it is aweful to know that parents and careers need to go media to get the attention of the goverment to have them do something about it, LOL as you have probably worked out i am a small girl with a big voice, i plan on going to every media out let i can to make this issue known across australia and so that the system is changed to benifit the special need kids, now i might be digging myself a big hole but it is worth it if kids like dylan and others are giving the servces they need, i cant afford to go private but like i told stateline i will if i have to, i cant sit back anymore and watch my son not move forward, he is a quiet very happy child who needs this break in life as you have read from the above post he has been through enough, more then anyone else would have gone through in the 1st year of life,
so now i stand and scream,” fix the system and help these kids”

My youngest went to Language preschool when he was 3 – he had great vocab, but wasn’t getting language structures.

Of course we did all the hearing and other tests first.

By the time he was in senior primary, we were getting into the processes for assessing Asberger’s. Because we could afford it, we did it privately. Waiting lists for Autism Spectrum are as bad as speech therapy, although it has become one of the “sexy” conditions now [rather like ADHD back in the 90’s].

It is horrible being a parent in this sort of situation. You know that getting therapy early is the BEST way of helping your child and the Government is saying that waiting a year will be fine.

It is not fine and it is in no way acceptable.

Going on Stateline may piss off the bureaucrats, but it gets the attention of the MLAs and, believe me, the therapists will be cheering you on. More power to you.

Another course of action is to take the matter of access to health services to the ACT Health Services Commissioner within the ACT Human Rights Commission.

Mitcore our eldest sounds similar in disposition to yours. We came across this – http://www.hsperson.com/pages/child.htm the book is available from Dymocks etc. We are still working through some of the strategies but just by reading it our eyes opened up as to how our child is likely interpreting the world around him.

I don’t think you really had much to lose, mitcore, and I don’t think it really works that way … at least I would hope not.

As Thumper said, carers tend to be invisible. What I took away from the Special Ed Election Evening was that the candidates from the political parties really were surprised to learn of some of the problems with the system, and were willing to listen and look at a way forward. Meredith Hunter had worked in the area and thus already had a pretty good understanding of these issues. It will be interesting to see what does or doesn’t get done now.

I think if we don’t tell our leaders then they can’t actually know. Most people don’t have much idea even in the general community. That is why it is good to speak out, but also give them a chance to fix the system. When all is said and done it has to be a partnership between carers, educators, service providers and the government of the day. They are just people too, and we can’t begin to know of their problems either.

: )

i said in the interview that sydney or the private sector is where i would go if i had to,
it is aired on tonights stateline show, i am excited but nervous i have killed any chance dylan may have had, not that he had much anyway,

I know Granny, it’s terrible, and the problem has been that none of the private speech pathologists in Canberra are taking new patients, they are so busy. The system is in crisis and it’s terrible to feel so helpless. We all want what is best for our children and what they need is help – NOW! I don’t understand how the ACT government can have known about the problem for so long and let it get this bad.

Yes, we have thought we may have to go private, but what kind of world is that where your therapy outcome depends on your parents’ paycheck?

Hi mitcore, good on you for going on Stateline. I am in a similar situation with my son. I have been told by Katy Gallagher’s staff that if my son is seen at Therapy ACT after being on the waiting list for 12 months this is a good outcome!!!! As though I should be grateful! I am told how important early intervention is, which is small comfort when you can’t access the services.

Are you in a position to attend private speech therapy? I presume you know about Monique, who was on Stateline last week and is bringing someone to Canberra to help.

You can email me at soolin@ymail.com

Cheers and take care.

LOL thanks, i am hoping it helps and doesnt hurt his chances

I hope you can get him some help, too, mitcore. Good luck with the Stateline thing!

: )

very true, the problem as i understand it is there is not enough staff to deal with the queue,
and while this is happening, kids everywhere who need help are not getting it,

What the government really doesn’t understand is that these kids need regular intensive therapy to make a difference, particularly autistic kids who often do not take well to change.

They need to see the same therapist pretty much forever and they need something happening pretty much daily. Whilst this ideal is probably unattainable, the less staff changes the better.

they sure do, i am hoping that stateline can help dylan by telling people his story
i am hoping really hoping he gets help, i need this help

There is help provided but it’s hard to find out what’s available – you have to know someone who knows someone who knows someone who once used a service. It’s also spread so thin that it often has the net effect of non-existence for the users.

The children seem to be making very little progress in many areas in many ways. Stories like ant’s and berraboy68’s do help me to hope that sometimes people really do win.

they dont get help, thats the problem, the goverment doesnt seem to want to assist parents and careers of special need kids,
i think they just believe it will disappear and if they goverment cant help our kids, what type of future does our children have?

Of course, Labor will say that nothing is wrong with the current system, that the sun is always shining, and all flying pigs have been accounted for.

Fiona said :

http://www.actlabor.com.au/Documents/Policy/Disability%20Policy.pdf

The ALP election promise

Was that a core or non-core promise? 🙂

he has had the griffth test done
and is in an early intervention school
the griffth test confirmed a speech disability and a devolpemental age of an early 2 yr old level

There’s a whole range of Early intervention preschool and playgroup programs that might be worth applying for

http://www.det.act.gov.au/school_education/special_education

It’s ceratinly worth asking whoever did the Griffiths assessment whether a referral had been made Education for one of the programs.

He is currently in an early intervention school at kaleen and has got a place for next yr,
it doesnt help much though he stays to himself and wont learn much, he isnt the best child for changes, he hates new people and hates routine change,
he is very smart, but has this problem which is holding him back from what he could really do,
he had a very rough first yr of life, he had myclonus seizures when he was 6 days old and was put into a drug induced coma to stop him from having seizures, by 6 mths he was diagnosed with bactiral menigitis and just before he turn 1 he had the worse case of chicken pox i had ever seen the only white part on him was the white in his eyes,

so as you can see i am concerned he has been through enough and deserves help and a break,
if you watch the show tom, you will see he is a happy child who is smart and can show potential to advance forward if he had the help he needs

My daughter actually started at a special school when she was 3. It changed our lives straight away, because already it is bringing you into a community with the other parents and teachers, and there are therapists that come and see the kids – not as often as they would like but it is something.

It might be worth looking into a place for him since he would get an extra year of preschool and nobody would mind changing nappies etc.

It’s just a thought, but I know both the principals on the northside and the southside and they are absolutely excellent quality people. They could possibly also advise on other avenues that would be more appropriate for Dylan.

he is 3 in jan next yr, he is my youngest i have 2 older sons, aged 8 yrs and 6 yrs, my older 2 dont talk for him and they dont do things for him, i made sure they didnt, so dylan would have to do it himself, but he wont and i cant move him forward on my own now, he wont eat anything that doesnt come from a baby tin and wont toilet train, he wont talk, the griffth test showed a speech disablity and a devolpmental delay of the early age of a 2yr old level,

and still no help,
i am giving it everything i have got to help him but i am at a wall now, i need specialised help to help him

How old is your son, mitcore? From what I can tell the older the child, the less services they seem to have access to. I have a friend who has had similar experiences.

Lets hope labour comes through, i know from standing in a queue with a child that needs help it is not easy to get, ACT therapy took my sons pyshio from him and i called in the time frame to keep his spot, they ignored me and now because of that he is back in a queue, because my phone wasnt enough for them, as for OT he is still waiting to be assesed he has been in that queue for about 7 mths now,
dont get me wrong there are kids out there much worse off then my son, but if he doesnt get the services he needs he will end up in woden special school and for a child who is delayed and has a speech disabilty that can be treated by getting specialised help, is wrong, i dont want him there and he doesnt need to got there, but if he doesnt end up getting help that is where he will go, i have 2 yrs to get him fixed and that is not long with a child who is very far behind, and can not talk, this is why i did the stateline interview to hopefully get help for him and to see if the goverment listens to the crys of help for parents and careers of special need kids

There was the Stateline last week also: Transcript: http://www.abc.net.au/stateline/act/content/2006/s2427849.htm

Labor promised 8 new preschool Speech Pathology positions for Therapy ACT during their election campaign, and two new “play therapist” positions, which I believe are for Occupational Therapists to help deliver early play programs for kids with PDDs…

Let’s see if these promises are kept,. hey?

I’ve sent youse both emails!

*grin*

Now that the ABC has embraced video streaming, Stateline’s video streams stay up for ages, once they upload it.

thank you berraboy, hopefully we can meet in granny’s group

Thanks Granny!

And good luck Mitcore!

Of course, BerraBoy68! We need all the support we can get. As I say we have been getting wonderful advice and support from people who just like our group!! But with all these things, the more people who are with you the more you get listened to.

Expect an email!

: )

i have in laws recording it on pc so i may be able to upload to you tube,
i have a forum, which i will be also trying to upload to, it has a section for parents and for kids with special needs, it is a new forum, i have only had it up for a few weeks now, but through it i am hoping to get information out globally, i also have an information section dealing with depression to helping a child through death, i am not sure if i can post the link in here, but would love to get members in to help make the issues known around the world,

if i can post the link can someone let me know and i will post it up,
thank you all for your support in this issue i am so thankful to have found this site

granny, can anybody join your group? I have a personal interest in this issue.

I came to Australia in 1973 aged 5 with a terrible stutter, a lisp and a cockney accent. While any of these could have caused me a problem with other kids, the stutter was the worst. While trying to oder my lunch at the tuckshop (St Vincents in Aranda( I stuttered in tryin to get out what I wanted. The less than caring b*tch at the tuckshop told me to go to the back of the line until I knew what I wanted. This embarrassed and hurt me so much that I went through to yr 12 without ever going back to a tuckshop, I’d get my mates to go for me.

I spent school holidays trying all sort of speech programs, mostly run my old unqualified biddies that just sent you into shops to ask the price of their goods. This was torture, humiliating and acheived nothing. My parents finally found a speech pathologist at the Old Canberra Hospital. I still recall this lady (and she was only young) with great fondness for helping me overcome both the stutter and lisp. It wasn’t an overnight cure but by god, it worked and she actually understood the emotional distress I had been going through. I’d love other kids to have the same wonderful experience in overcoming these problems that I had.

Things must have changed, which is a shame. Back in the 70s, I attended intensive speech therapy with a very effective, talented speech therapist through ACT Health. It was actually upstairs in the Melbourne building, above what is now taht fake Irish pub.

It was just me, and a boy a bit older, who was the son of a local magistrate then. We both had pretty severe problems, and she worked with us right through our summer/xmas holidays, full time. She was using an american technique called Smooth Speech, and it worked brilliantly. My stutter only reappears once in a blue moon, and I’m always very surprised when it does. Straight back into smooth speech, and it goes dormant for another few years.

I had to go to Sydney to get therapy for my daughter. They put her on Fast Forword. Given the cost of Fast Forword, the cost of the trip to Sydney and the care of the other two children in our absence is something we could have done without.

I wish you all the best and will pass this story around for you.

Oh, cool! Thanks, Skid! Is that up permanently or just for a limited time?

Stateline do a video stream a day or so after the broadcast.

Mitcore, I don’t usually get to watch television. Is there any way you can record it and put it up on YouTube, or is that not allowed?

winning star10:45 am 27 Nov 08

I think Labor had an election pledge for more speech therapists – won’t be here for some time though!!!

thank you all, i will be on stateline this friday 28th nov
it is only a 5 min thing but i am hoping that in that 5 mins i get my voice out,
feel free to watch

granny i would love to join, i want this issue to be heard and i know i cant fo it on my own,
i will e mail you shortly to get days and times,

thank you all for your thoughts

This is a well known issue.

People used to go to Goulburn to access speech therapy, but I understand all Goulburn specialists are now booked out with Canberra patients too.

*chuckle*

VYBerlinaV8_the_one_they_all_copy said :

. Fortunately, she’s one of the . . . most articulate people I know.

BWHAAAHAAHAA!

Thanks VY.

Mitcore, we have a group that meets regularly to advocate for these issues. We usually meet at the Yacht Club, drink wine and work to get better outcomes for our kids. We have carers ranging from preschool to adult children, and a couple of other very welcome and cluey people are also helping us.

You would be very welcome to come along. We have just found that it is easier to get things done as a group, and we can support each other while we do it. Besides it is fun!

We are aiming to meet on a variety of different days and times so that more people will be able to attend one meeting or another.

We are forging a strong group and having a lot of fun. You would be most welcome to join us. You can email granny1963@gmail.com. I don’t check it often, but I will check over the next couple of days or so.

I think it’s fantastic that you’re going on Stateline. More people need to be aware of the sorts of issues that parents and carers of people with a disability are facing.

All the best with your son!

Love Granny

VYBerlinaV8_the_one_they_all_copy8:55 am 27 Nov 08

I know a lady who works as a speech therapist in Canberra, and she seems to have a huge workload. Fortunately, she’s one of the smartest and most articulate people I know.

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