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What does "nothing about us without us" mean if you're profoundly cognitively disabled? #UNCRPD #disability @NDAIreland profoundireland.wordpress.co… via @ProfoundIreland
Profound Ireland retweeted
Replying to @irishexaminer
I disagree. Special schools are a wonderful setting for profoundly disabled, medically complex students who require nursing and medical intervention/care during the day. @ProfoundIreland
Find out how you can help your disabled adult find a suitable residential place while you’re still alive, at the #BeforeWeDie National Assembly on Sat 19th Sept.
#Disability #ProfoundDisability
You can learn more, and book your FREE tickets here: eventbrite.com/e/before-we-d…

ALT Pic of a disabled young woman with long brown hair and wearing a navy sweatshirt with New York on it, behind her,her parents sit on a sofa. The pic is on a green background with the following words: National Assembly 19th September 11.00am - 3.00pm The Helix, DCU, Dublin Dergn Stadi NEW VAD IZ For more information go to: www.beforewedie.ie What happens when we are gone?
Profound Ireland retweeted
It’s become apparent now that we in the disability and caring community do not figure in Governments mind as a group who need supports.
This morning on @morningireland it’s wall to wall coverage around an emergency payment to tackle the cost of living crisis they are even using the moniker “Heat or Eat” it’s a thing now because it’s now hitting the “ordinary voter”.
Along with the @IrishWheelchair @DisabilityFed and others we have been protesting for cost of living supports since the last budget but have constantly being told “No”.
What’s changed @MichealMartinTD @SimonHarrisTD @jackfchambers why is it you were resolute that there would be no additional supports even though we were drowning in debt?
You even wrote to us explaining to us the rationale behind Governments “No” position even though we were desperate, what’s changed?
@TomClonan @mulvanypeopleb1 @MaryLouMcDonald @RBoydBarrett @ivanabacik @HollyCairnsTD @Toibin1 @NewstalkFM @rtenews @LunchtimeLiveNT
Profound Ireland retweeted
Please do read this article. This could be any of us. In fact, it was my life for nearly 18 years. Can you imagine this situation into your 80's? Ireland MUST do better for families with disabled children/adult children. #Disability
“450 adults with intellectual disabilities in Ireland are cared for by parents over 80 .. and cannot access residential support until their parents die.”
#Disability #BeforeWeDie #ProfoundDisability
irishtimes.com/opinion/2026/…
“450 adults with intellectual disabilities in Ireland are cared for by parents over 80 .. and cannot access residential support until their parents die.”
#Disability #BeforeWeDie #ProfoundDisability
irishtimes.com/opinion/2026/…
'We're on our knees caring, and then we have this Kafkaesque nightmare.' - #BeforeWeDie campaigner Tony Murray on Newstalk this week talking about the Assisted Decision Making Capacity Act.
#Disability
instagram.com/reel/DUi4lUIjJ…
Profound Ireland retweeted
Replying to @ProfoundIreland @id_dad
I wonder how many, if any, of those "2,000 adults with intellectual disabilities who live with their parents" also have physical disability? There is a tremendous taxing on the carer parent's body when their adult child is physically disabled. This needs to be highlighted.
“With nobody to represent them, people with intellectual disabilities may never leave for-profit emergency placements far from home”
#Disability #HighSupportNeeds #WhoCares #BeforeWeDie
irishexaminer.com/opinion/co…
“Mother of profoundly disabled boy says carers want support not praise”
#Disability
irishtimes.com/ireland/2026/…
Profound Ireland retweeted
Meant to post this morning to tell any special needs families in Ireland that Lidl has weighted blankets on sale at the moment. 😊
@ProfoundIreland
Profound Ireland retweeted
It's #InternationalDayOfPersonswithDisabilities For nearly 18yrs I was a lone parent carer to my profoundly disabled son Brendan Bjørn (RIP). Cost of living for disabled ppl is higher than others. Many can't afford heating & wait years for healthcare. Ask why b/c it shouldn't be.
Profound Ireland retweeted
It says 'for disabled people only' What about the family carers of profoundly disabled people? Can they participate? @ProfoundIreland
Profound Ireland retweeted
Replying to @AddressingLife @ProfoundIreland @_IHREC @samwiseblank @ProfCCostello @patrishamunatsi @rosevwall @AdamPHarris @paveebeoir
Such a disappointment that there seems to be no selections / appointments to the @_IHREC Disability Advisory Committee DAC with a lived experience of high support intellectual disability or their informal support.
Profound Ireland retweeted
Replying to @_IHREC @samwiseblank @ProfCCostello @patrishamunatsi @rosevwall @AdamPHarris @paveebeoir
And not one of them represents the appx 20% of our society with a disability, especially those with severe/profound disability. I had hoped for a better selection but Ireland has never been great when it comes to human rights for people with disabilities.
@ProfoundIreland
Profound Ireland retweeted
Be good if as many people as possible would fill out this survey.
A vital part of our activism is engagement and what better way to engage then to make those decision makers aware of the issues we face.
#HaveYourSay
Disability Act 2005: National Survey
Complete via the link below:
bit.ly/SurveyDisabilityAct20…
Profound Ireland retweeted
Disappointing news in the field of CMV #cytomegalovirus vaccine research. CMV is a leading cause of childhood disability & what severely damaged my late son's brain in utero. If you are pregnant, PLEASE learn about CMV and take hygienic precautions esp. around young children.
Families caring for adult offspring with intellectual disabilities “don’t want sympathy, they want certainty, they want to know that their children will be safe, valued, and loved, when they are gone” — @GaryGannonTD
#Disability #BeforeWeDie #IEPOL
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