Discover and read the best of Twitter Threads about #NothingAboutUsWithoutUs

Most recents (24)

ABA alert, possible #CRPD/#DisabilityRights violation: Just saw mail from Dr Anchen Laubscher, Medical Director of @Netcare_Limited (well-known hospital group in South Africa). They're having a briefing by ABA providers for clinical staff on 10 May. #NothingAboutUsWithoutUs
@Netcare_Limited Given that I've only heard about this now, I'm guessing that the @Netcare_Limited leadership team have not yet received #DisabilityRights training, and that they may be unaware of the implications of what they have agreed to. Disability activists are contacting them right now.
For those who don't know what ABA is and why human rights activists want ABA-based therapies banned in South Africa and internationally, here is an article explaining some of the abuses inherent in these methods.

#BanABA #ABAisAbuse
autisticstrategies.net/nonspeaking-au…
Read 6 tweets
How do we think that @AlboMP is going to 'rein in' spending on the NDIS, without talking to us about it first?

And we are talking about a lot of money here - growth is currently at 14%; he is saying they want to commit to a goal of 8%.

So listen up, disabled folk. Important.
2/ There are a couple of ways you can reduce costs and @billshortenmp has signalled that he will be introducing a couple of non controversial measures, including catching the bad guys, cutting red tape and reducing price gouging. It's not clear how he will do the third.
3/ But there are some signals that changes are on the horizon and to be honest, we will all be fairly fucked off (please note, @kurtfearnley and co) if these are landed on us without any discussion. And it is not our first time round the block. #RoboNDIS #IndependentAssessments
Read 28 tweets
"(Because Caroline calls Casey her son, and for the sake of clarity, we are using male references for Casey.)"

This really tells you everything you need to know about the ethics of the reporter heere
I cannot emphasize enough that it's ridiculous that anyone is still quoting Jamie Reed about trans care. She's not trained in trans care. She's not trained in any kind of health care. She's trained in administrative work.
Anything she thinks she knows about trans care comes from doing intake questionaires and scheduling appointments.
Read 9 tweets
I watched the @7NewsSydney Vape Debate moderated by @AmeliaBrace between (then) premier @Dom_Perrottet and (current) premier @ChrisMinnsMP with interest.

Buckle up. It's a 🧵
[Amelia] In New South Wales they're technically only available by prescription, but there's a booming Black Market trade out there.
[Chris] Yeah I am concerned about, I guess, the ability the ease of ability for particularly young people to get access to Vapes.
Read 58 tweets
Inclusive Medical/Health Insurance Policies are integral to ensure Universal Health Coverage. However, grim reality is that our insurance policies aren't inclusive of persons with disabilities among other marginalized groups despite the circular by IRDAI dated 2nd June 2020. 1/n. Circular by Insurance Regul...
2/ Delhi High Court in Saurabh Shukla v. Max Bupa Insurance & Anr., dated 13th December 2022, ordered the Insurance Regulatory and Development Authority of India to ensure insurance policies are designed for persons with disability.
3/ The court remarked that "it is the settled position in law that the right to life includes the right to health and healthcare is an integral part of the same." [livelaw.in/news-updates/c…]
Read 11 tweets
Billions around the globe are just one medical emergency away from slipping into the vicious cycle of poverty because of their capability deprivation. (1/n)

Post in collaboration with @poornam_idam

#HealthForAll #UHCDay #LeaveNoOneBehind #Inclusion #UniversalAccessibility On a green background with ...
2/ Medical debt is a major cause of poverty in India and around the globe as half of the world lacks access to essential health services.

@UHC_Day @UHC2030 @CSOs4UHC @UN @WHO @WBG_Health @MoHFW_INDIA

#HealthForAll #UHCDay #LeaveNoOneBehind #Inclusion #UniversalAccessibility
3/ Persons with disabilities face double trouble owing to their disproportionate requirement for medical services & inaccessible medical infrastructure (both in terms of the monetary & built environment).

#HealthForAll #UHCDay #LeaveNoOneBehind #Inclusion #UniversalAccessibility
Read 5 tweets
The only downside of chairing/taking part in your own panel is that you can’t live tweet it, but I want to share some reflections for people who couldn't make it. #KFAnnual2022

🧵
First @FaziletHadi opened the discussion by setting out the challenges facing disabled people at present, but also the importance of a #SocialModel approach, #NothingAboutUsWithoutUs and the principles of choice and control.
I then got to share the findings of the work @DisRightsUK and @TheKingsFund published this summer about the importance of involving disabled people in health and care service design - you can find it here (it's short and sweet!):

kingsfund.org.uk/publications/p…
Read 17 tweets
And if we want better research, we can start with the research priorities of ***#ActuallyAutistic*** people, NOT allistic people.

#NothingAboutUsWithoutUs

1/
What are the autism research priorities of #ActuallyAutistic people?

This paper cites previous research asking this, & adds current results for autistic adults in Scotland.



#NothingAboutUsWithoutUs

2/
You will notice the VAST differences between what #ActuallyAutistic people want to see researched, & what non-autistic researchers want to see researched.

Autistic people want to see research that benefits *autistic* people's everyday lives.

#NothingAboutUsWithoutUs

3/
Read 6 tweets
What is occurring in Fairfax VA in response to the latest scandal of a school board member using R slur is perfectly illustrative of why the mantra of disability rights movement is #NothingAboutUsWithoutUs w/a whole lot of talking over & dismissal of neurodivergent pain 1/25
I'll start w/response of activists on right. Folks who have done nothing for neurodivergent kids, were never involved w/advocacy for NDs, now feigning outrage over the use of the R slur. @AsraNomani, w/out bleeping out the slur, has disseminated the painful video far & wide 2/25
In doing so, with tens of thousands of followers, and her media influence, actually said in a tweet, that her proving the hypocrisy w/which her parent friends have dealt is why she decided to risk causing NDs further pain, all while spreading the pain for more NDs to see 3/25
Read 26 tweets
🧵How can #HCP assist people who chose to use #DYIAID?

The @OPENDiabetesEU ⤵️
▶️ Katarina Braune is a co-founder
▶️ Patient-led
▶️ 2/3 of the international team live w/#T1D
▶️ #OpenSource #AID data

#ISPAD2022 #dedoc°voices #wearenotwaiting @dedocORG @ispad_org 1/n
How can #HCP assist people who chose to use #DYIAID?

#wearenotwaiting movement ⤵️
Because DIY #ClosedLoop systems have been so life-changing for them and their kids, they decided to make it available for all.

#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 2/n
How can #HCP assist people who chose to use #DYIAID?

International consensus statement on #OpenSource automated insulin delivery ⤵️
✅ Published in @TheLancetEndo on Nov 13 2021
▶️ thelancet.com/journals/landi…

#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
Read 22 tweets
🧵#AI based decision support systems:

✅ Improves clinical outcomes
✅ Higher access to care
✅ Provides precision medicine
-Revital Nimri

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
#AI based decision support systems:

'Is the quality of care improving?
No, it isn't.
We must do better.'
-Revital Nimri

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
#AI based decision support systems:

✅ Self-management tools
✅ Diagnosis, screening, prevention of #diabetes
✅ Prediction tools
✅ Clinical management
-Revital Nimri

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 3/n
Read 6 tweets
@lifeforachild /@ispad_org survey - shifting responsibility:
'I am an advocate because I believe that evidence should be made accessible to every stakeholder.'
-Emma Klatman ❤️

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG 1/n
@lifeforachild /@ispad_org survey - shifting responsibility:
'Task-shifting & task-sharing: moving a task on from one #HCP to another & where staff from different discipline split the tasks. We are very interested in task-shifting in #T1D'
-Emma Klatman ❤️

ISPAD2022 #dedoc° 2/n
@lifeforachild /@ispad_org survey - shifting responsibility:
'We want to document the level of task-shifting and understand who from the clinical team is doing what. We established en survey in 2021 in many languages.'
-Emma Klatman ❤️

#ISPAD #ISPAD2022 #dedoc° @dedocORG 3/n
Read 8 tweets
🧵#ISPAD #dedoc° symposium:

Dedoc° started 10y ago on Twitter:
✅ Peer support
✅ Meetings outside of scientific conferences cause #PwD were not allowed in

#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
#ISPAD #dedoc° symposium:

ISPAD was the 1st scientific conference that organised a Dedoc° symposium in 2021 🙏
-@tadorna

#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n
#ISPAD #dedoc° symposium:

Dedoc° is a platform for others to stand on - to have the #PwD voices heard 🔊
-@tadorna

#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 3/n
Read 16 tweets
🧵Microbiota: can they prevent #TID?
Incidence of T1D is rising particularly in the young.
Environmental factors could drive this pattern observed across the globe.
-N. Hanssen

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 1/n
Microbiota: can they prevent #TID?
+ rapid destruction of #BetaCells in kids than adults.
#PwD with residual beta cells have higher #TIR.
-N. Hanssen

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
Microbiota: can they prevent #TID?
Poor discrimination between self/not self [#autoimmunity] happens with loss of gut microbiome.
-N. Hanssen

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 3/n
Read 4 tweets
🧵#diabetes prevention : are we on the right track?
Here are the players in the development of #T1D 👇
-M. Knip

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #patientvoice #payitforward @dedocORG @ispad_org 1/n
#diabetes prevention : are we on the right track?
The different stages of #betaCells autoimmunity:
1⃣ Normoglycemia
2⃣ Presymptomatic dysglycemia
3⃣ Symptomatic dysglycemia
Primary prevention shld start during pregnancy.
-M. Knip

#ISPAD2022 #dedoc°voices @dedocORG @ispad_org 2/n
#diabetes prevention : are we on the right track?
Early life infection may be the initiator of the endotype. There is a step autoantibodies decline among those diagnosed before 7yo.
-M. Knip

#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n
Read 7 tweets
Potential role of antiviral treatment in #T1D:

Pathogenesis:
1⃣ Genetic susceptibility
2⃣ Something triggers autoimmunity in the 1st years of life or later
3⃣ #BetaCell destruction
4⃣ Diagnosis
-L. Krogvold

#ISPAD #ISPAD2022 #dedoc°voices #patientvoice @dedocORG @ispad_org 1/n
Potential role of antiviral treatment in #T1D:

'The time trend is the best proof that there are environmental factors triggering T1D.
Heredity as well.'
-L. Krogvold

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
Potential role of antiviral treatment in #T1D:

'From the 1920s we knew that T1D was of viral origin as deaths from #diabetes in Norway correlated with the mumps pandemic.'
-L. Krogvold

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs @dedocORG @ispad_org 3/n
Read 7 tweets
The last mile for #T1D cure:
'I believe that cell therapy can be the T1D cure. We've had landmark results in the last 2y.
-L. Piemonti

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n
The last mile for #T1D cure:
'We know now that #BetaCell replacement can cure T1D. This is the #BG profile of someone who used to live with #diabetes 1y 1/2 ago.'
-L. Piemonti

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n
The last mile for #T1D cure:
'We started #BetaCell in Milan replacement in 1989. Had to wait for 30y for this procedure to be recognised.'
-L. Piemonti

Can you imagine living without the mental load & physical burden of #diabetes?

#ISPAD2022 #dedoc° @dedocORG @ispad_org 3/n
Read 13 tweets
Digitalization in Diabetes Education and Care:
'We know that autoimmunity starts way before #T1D diagnosis - if screened. We learnt that #cpeptide might not be relevant thanks to models'
-Dr A. Galderisi

#ISPAD #ISPAD2022 #dedoc°voices
#patientvoice #payitforward @dedocORG 1/n ImageImageImage
Digitalization in Diabetes Education and Care:
'We can find heterogeneity in #T1D even before diagnosis. Important to individualise treatment.'-Dr A. Galderisi

Yes, every #PwD has their own #diabetes.

#ISPAD #ISPAD2022 #dedoc°voices
#nothingaboutuswithoutus @dedocORG 2/n ImageImage
Digitalization in #diabetes Education and Care:
'#TIR and #BG daily variability matter though we still look at the big picture. #AI can help us understand further.'
-Dr A. Galderisi

#ISPAD #ISPAD2022 #dedoc°voices
#patientvoice #payitforward @dedocORG 3/n Image
Read 6 tweets
Betting for the next best thing in digital #diabetes technology:

'#AID systems & algorithms are very effective.
Unfortunately, they are used by a minority of ppl who cld benefit from them.'
-Steven Russell

#EASD2022 #dedoc°voices #nothingaboutuswithoutus @dedocORG 1/n
Betting for the next best thing in digital #diabetes technology:

'In addition to the challenges of getting hybrid #AID systems, they still require setups. They still require the user to #carbcount for meals & initiate correction boluses.'
-Steven Russell

#EASD2022 #dedoc 2/n
Betting for the next best thing in digital #diabetes technology:

'The #IletBionicPancreas pivotal trial results will be published by end Sept.' -Steven Russell

✅ Only setup needed: @PwD's weight
✅ No #carbcounting
✅ Fully automated

#EASD2022 #dedoc°voices #BetaBionics 3/n
Read 14 tweets
Are we becoming robots? #AID systems for everyone with #T1D:

'#CGM is the Archimedean point of #diabetes technology. This is when the idea of closing the loop really emerged.'
-Moshe Phillip

#EASD2022 #dedoc°voices #nothingaboutuswithoutus @EASDnews @dedocORG 1/n
Are we becoming robots? #AID systems for everyone with #T1D:

'#CGM opened our eyes to the fact that the data we used to get was very different from the reality #PwD live.'
-Moshe Phillip

So true. Connecting the red dots' never been our reality.

#EASD2022 #dedoc° @dedocORG 2/n
Are we becoming robots? #AID systems for everyone with #T1D:

'I'd like to convince you they are efficient. Automated Insulin Delivery is safe and efficient.'
-Moshe Phillip

#EASD2022 #dedoc°voices #nothingaboutuswithoutus @EASDnews @dedocORG 2/n
Read 6 tweets
About to start watching the inspiring advocates of the #dedoc° symposium that was held earlier today at #EASD2022 🍿

Sad I couldn't watch it live. Couldn't wait to catch up here ▶️

#nothingaboutuswithoutus #diabetesadvocacy
@EASDnews @dedocORG 1/n
I already know many happy tears will be shed listening to their inspiring advocacy work 🥲

#EASD2022 #dedoc°voices #nothingaboutuswithoutus #diabetesadvocacy #languagematters
@EASDnews @dedocORG 2/n
Dedoc° symposium, What we wish you knew and why:
'It's the 1st ever #dedoc° symposium at #EASD2022'. This is what I had in mind 10y ago - a panel of advocates at the world largest #diabetes conference.'

-Bastian Hauck, @dedocORG founder

#nothingaboutuswithoutus
@EASDnews 3/n
Read 19 tweets
Poppycock from the infamous friend of Ivar Lovaas, Ron Leaf:
"Even Positive Behavior Support guidelines included the use of strong aversives under some circumstances (Brown et al., 2008)..."
"...and Electric Convulsive Therapy (ECT) is often the recommended intervention with severe depression (The UK ECT Review Group, 2003)."

Dude, they put those people under GENERAL ANAESTHESIA so it won't hurt. It's not an aversive. Are you THAT obtuse?
Read 98 tweets
So many American and Canadian parents of autistic children are being given no options but ABA. If they refuse direct ABA, people in charge slip the ABA methods into speech therapy, classroom practices or anywhere they can.

I'm seeing parents ask in Facebook groups how they...
...can get their children out of this, but they are being blocked all over. Even when officials agree not to use ABA, things happen that lead them to investigate what's going on, and you find out ABA-based approaches were used anyway, they just didn't call it that.
While all these people have this odd idea about 'evidence-based practice', they are unable to face the evidence playing out in front of them.
Read 39 tweets
🔴The 15th Session of the Conference of States Parties to the #CRPD is now live.

📺Watch the the Opening of the Conference here: media.un.org/en/asset/k1b/k…

🧐Look out for our President, @sdswenson, who will be delivering a statement shortly! #COSP15
Our network is following in-person and online! #COSP15 #CRPD #NothingAboutUsWithoutUs #CRPDNow @IDA_CRPD_Forum @DSiupdate Our in-person delegation tu...Screenshot of Prof Gerard Q...
Watch @sdswenson deliver her statement now LIVE from the United Nations: media.un.org/en/asset/k1f/k…
Read 6 tweets

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