Profound Ireland

The voice of kids/adults with profound/severe disabilities (physical and/or solely intellectual), & complex, dependent life-long needs + their family carers

[Profound Ireland @ProfoundIreland]

What does "nothing about us without us" mean if you're profoundly cognitively disabled? #UNCRPD #disability @NDAIreland https://t.co/ZTh75wrcTq via @ProfoundIreland

[Access For All Ireland @AccessForAll7]

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

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

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

[Profound Ireland @ProfoundIreland]

@AddressingLife @id_dad

[Profound Ireland @ProfoundIreland]

“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

https://t.co/uGnkVhhgrs

[Profound Ireland @ProfoundIreland]

@AddressingLife @id_dad

[Profound Ireland @ProfoundIreland]

'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

https://t.co/yk1f4HtAvo

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

@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.

[Profound Ireland @ProfoundIreland]

@AddressingLife @id_dad

[Profound Ireland @ProfoundIreland]

“With nobody to represent them, people with intellectual disabilities may never leave for-profit emergency placements far from home”

#Disability #HighSupportNeeds #WhoCares #BeforeWeDie

https://t.co/4WASfLVgv8

[Profound Ireland @ProfoundIreland]

“Mother of profoundly disabled boy says carers want support not praise”

#Disability

https://t.co/AEzKGe3yKm

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

Meant to post this morning to tell any special needs families in Ireland that Lidl has weighted blankets on sale at the moment. 😊

@ProfoundIreland

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

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.

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

@ILMIreland It says 'for disabled people only' What about the family carers of profoundly disabled people? Can they participate? @ProfoundIreland

[ID Dad. (and Paddystinian) 🇮🇪🇪🇺🇺🇦🇲🇶 @id_dad]

@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.

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

@_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

[Access For All Ireland @AccessForAll7]

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

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

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.

[Profound Ireland @ProfoundIreland]

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

https://t.co/O4Mm53muve

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

What @daracalleary et al need to understand is that many #carers CAN'T work outside the home in paid employment because they are working literally 24/7 caring for their disabled loved one, especially if profoundly disabled. I was in that situation for years. @ProfoundIreland

[Tracy 💜 ☮️ 📸 ✍🏼 @AddressingLife]

Hey @FineGael is this actually the message you want your reps sending to people with #disability or the family #carers working 24/7 to care for their disabled love one? €244 means tested weekly pymnt is poverty level. Care to reply please @1Hildegarde? @ProfoundIreland