Parents who have been caring for their disabled children since birth are "afraid to die" because they don't know what will happen to their children due to the shortage of residential care places.
Angelina Moore has been caring for her son Edward since he was born 30 years ago. He is autistic, almost non-verbal and requires round the clock care in their Terenure home.
The 63-year-old mother, who's health has not been the best lately, lives in a HSE catchment area with 500 other parents - some of which are in their 90s - in similar situations applying for the same residential care.
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However, chances of getting a place are slim as just four places were allocated last year in Community Health Organisation 7 which covers Dublin south, Kildare and West Wicklow.
"My life is my son - he is all I have", she said. "The impact on him, if anything happened to me, would be horrific."
The desperate mother said she wants to see Edward in residential care before she dies because it would act as a "slow release" to life without her. She said: "It would be lovely for him to have a home from home, that when I do go - and I will go - that my son feels that this centre is his home.
"But now the centre can't promise that because the HSE won't release the funding. My son could end up in A&E for months." Angelina broke down in tears as she said: "This is so wrong - what they are doing.
"There isn't a night I don't go to bed - and I am sorry for crying - that I don't think what is going to happen my son.
She added: "I am a mother and a lone parent. I've been fighting with the HSE to try and get residential care for my son who is 30.
"My health wouldn't be the best but I just find it really hard to believe there are 500 others - some in their 80s and 90s - and they are left with these young vulnerable adults and are unable to care for them.
Angelina wants parents like her to form a group to fight for residential care for disabled adults. "We are the forgotten ones," she said. "We need people to come forward and get together."
"They release four placements a year. It means my son would be 125 by the time he gets one. Sure he would be well dead and buried."
Angelina was at a meeting at her son's service centre and was told Edward could be left on a trolley in an A&E ward "for months" if she died. Angelina said: "I am heartbroken.
"I am actually afraid to die because my son has autism and if he was left on a hospital bed out in A&E in a hallway.
"To do that to my son, I would be gutted. It would be so damaging but nobody seems to care. It is like we just don't matter and it's really, really cruel.
"That's all I have asked the HSE - is to give him his dignity in independent living where he can kind of mature. He is a gentle giant and a lovely, lovely young man."
Edward receives respite three times a year which is a sort of "break from home". His local care centre takes him on Friday evening and he returns home on Sunday morning. He used to get respite care six times a year, Angelina said.
Correspondence from Angelina's catchment area showed that some applicants are caring for their "aging dependent offspring" into their 90s and confirmed that just four residential care places were secured last year.
In a response to a query from Labour Councillor Mary Freehill, a representative for CHO 7 said: "This area has a list of 500 service users who have requested residential care, among this cohort are parents in their 90’s caring for aging dependent offspring.
"In 2022 this area received €600,000 to fund 4 planned residential placements, funding was also received for 1 supported living arrangement. National policy seeks to support people to be maintained in their home environment and community wherever possible, in recognition of this funding was provided for additional respite and personal assistant services."
Angelina's HSE area - CHO 7 - told Dublin Live they cannot comment on individual cases. A spokesman said: "Residential placements are only considered in circumstances where all other attempts to maintain the client at home have failed.
"In the absence of residential services, disability staff across statutory and voluntary providers work within available resource, in conjunction with families and service providers, to develop individual support plans on a service user basis to address specific needs in so far as possible.
"In general, plans utilise a mix of multi/inter-disciplinary supports, structured day services, and, where appropriate, overnight and outreach respite services. We have many service users maintained in their home environment with a mix of these services." The spokesman confirmed there were 500 applicants for residential care.
In response to queries from Dublin Live, the HSE said: "With regard to Residential places, the demand for full-time residential placements is extremely high. The scale of need and the necessary funding to meet current and future needs is set out in the Disability Capacity Review.
"Each CHO continues to respond to the needs of people in their areas within the resources available."
To contact Angelina Moore about the group she is forming, email dan.grennan@reachplc.com.
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