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

Joined January 2017
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
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Itโ€™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 itโ€™s wall to wall coverage around an emergency payment to tackle the cost of living crisis they are even using the moniker โ€œHeat or Eatโ€ itโ€™s a thing now because itโ€™s now hitting the โ€œordinary voterโ€. 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 โ€œNoโ€. Whatโ€™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 โ€œNoโ€ position even though we were desperate, whatโ€™s changed? @TomClonan @mulvanypeopleb1 @MaryLouMcDonald @RBoydBarrett @ivanabacik @HollyCairnsTD @Toibin1 @NewstalkFM @rtenews @LunchtimeLiveNT
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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
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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.
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Meant to post this morning to tell any special needs families in Ireland that Lidl has weighted blankets on sale at the moment. ๐Ÿ˜Š @ProfoundIreland
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It's #InternationalDayOfPersonswithDisabilities For nearly 18yrs I was a lone parent carer to my profoundly disabled son Brendan Bjรธrn (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.
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It says 'for disabled people only' What about the family carers of profoundly disabled people? Can they participate? @ProfoundIreland
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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.
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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
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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/SurveyDisabilityAct20โ€ฆ
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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.
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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
Minister Dara Calleary TD, has today announced a Social Protection Budget package worth over โ‚ฌ1.15 billion including record increases in the Carerโ€™s Allowance weekly income disregard. The full list of Budget measures is available at Gov.ie/DSPBudget2026
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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? โ‚ฌ244 means tested weekly pymnt is poverty level. Care to reply please @1Hildegarde? @ProfoundIreland
Social Justice Ireland telling RTร‰ that โ‚ฌ10 increase in social welfare is 'not enough'. ๐Ÿ‘‰ The best social welfare measure is called employment #Budget2026
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Facebook memory of the day, this from 2017. Needless to say, it didn't change anything. ๐Ÿ’” #scoliosis #disability @ProfoundIreland
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Hi Claire, Did this amendment ever go through and the anomaly in Disability Allowance payments for disabled children 16 years old & over ever get changed? If it hasn't, can we please raise this again with the current Minister for Social Protection? @ClaireKerrane @ProfoundIreland
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Facebook memory of the day, this from 2016. A glimpse into the world of having a profoundly disabled child and not receiving the in-home supports as needed. No wonder my back is in chronic pain after nearly 18 years of being a lone parent carer. #disability #carers
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Will you be consulting with #disability advocates who represent people with profound disability? @ProfoundIreland
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Is the HSE not willing to pay for a night nurse/HCA for them? I'm assuming not as they never did for me and my profoundly disabled son (RIP) even though I'm a lone parent. There should be PROPER, FULL in-home supports for medically complex children. There isn't. @ProfoundIreland
Please share to try and help 11 year old Brody and his family. If you know anyone that might be able to help, please send this onto them!
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Please share to try and help 11 year old Brody and his family. If you know anyone that might be able to help, please send this onto them!
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Replying to @paulmurphy_TD
Is the HSE not willing to pay for a night nurse/HCA for them? I'm assuming not as they never did for me and my profoundly disabled son (RIP) even though I'm a lone parent. There should be PROPER, FULL in-home supports for medically complex children. There isn't. @ProfoundIreland
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