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FAMILIES OF RESIDENTS in Áras Attracta, a residential respite and day service for adults with intellectual disabilities in Co Mayo, are concerned about plans to potentially move their loved ones from the home.
Earlier this year the HSE said it was “accelerating … plans to move from an institutional model of care to a community-based, person-centred model of service, enabling and supporting meaningful lives as chosen by users, within the resources available”.
The future of Áras Attracta in Swinford is currently under review, with speculation it is to be closed down in the coming years.
The facility came into the spotlight in December 2014, when RTÉ aired hidden camera footage of vulnerable people at the centre being force-fed and physically abused.
The HSE has previously denied the facility is closing down, but residents are being assessed to see who may be better off living in the community.
Tom Ward’s brother Jim has lived in the facility for about 26 years. He is profoundly physically and intellectually disabled, and needs constant care.
“He can’t speak or communicate. As far as we know he doesn’t understand or has no way of indicating if he does,” Tom said.
He and his mother Brid fought a public campaign in the late ’80s and early ’90s to secure residential care for Jim, who is now 43 years old.
Tom told TheJournal.ie that while living in the community might benefit some residents, it is simply not an option for his brother.
“Some people in Áras might do very well in the community, some residents are much more capable.
“No matter how fantastic they paint community living, there’s no prospect of my brother’s condition improving. It will disimprove as he gets older.”
Tom said that Jim has access to everything he needs at Áras Attracta, including a hydrotherapy pool – something Tom described as his brother’s only pleasure in life.
We all know about the scandals that have been made public … Jim has never had anything but the utmost care and respect and love from the staff looking after him.
Tom said the main issues at the facility are cutbacks in terms of resources and staff. He believes it would be a waste to close the facility or scale it down as it was purpose-built and is of a higher standard than other similar centres.
“There are some institutions that need to close down, Áras Attracta is not one of them,” Tom said, adding that some other facilities are not fit for purpose and “little more than prison barracks”.
Tom and Brid have written to the HSE and Department of Health about their concerns, but Tom said they have not received direct answers to many of their questions about specific aspects of Jim’s future care.
In a letter sent from the HSE to Brid last month, and seen by TheJournal.ie, she was told that people “live better, more meaningful lives in their communities with the necessary supports to meet their needs”.
The letter told her that a “transition team … will work with individuals and their families to establish the best possible life for the person on their transition to the community”.
He said his mother (86) “thought her worries about Jim were over”, but is now very concerned about his future, adding: “She will do anything she believes will help Jim.
She is a very mild, timid woman. She will be affected and frightened, but if she takes a stance on Jim she won’t be budged.
HSE
A spokesperson for the HSE sent us the following statement: “We are in the process of a service improvement plan moving from an institutional model of care to a community based model of support.
“This will be an innovative model of integrated community support networks that promote dignity, respect, empowerment, choice and autonomy for people with intellectual disabilities.”
The statement added that the HSE and staff at Áras Attracta are “fully engaged” with the move away from congregated settings, and a family forum on the subject has been in place since September 2015.
The spokesperson noted that, at present, 90 people avail of full-time residential services at Áras Attracta, with an additional eight people availing of respite services and a further 15 individuals availing of day services.
They said that all people living at Áras Attracta “participated in an assessment process to determine their specific support needs”.
The assessments were shared with each individual and/or family member to outline the level of support required to live in the community.
“People living at Áras Attracta have historically lived in an institutional model of care and will need support and assistance to transition to a social care model of support. The goal is to empower people to have an enhanced quality of life and to establish a more positive living environment. People will exercise choice in where they live and with whom.”
The statement said that, in the first year of the transition process, 27 people are moving “to homes of their choosing in the local communities”.
It added that any families who are “fearful of community living” will be supported “as we progress with the implementation of the decongregation policy”.
We will of course respect each person’s wishes and preference and nobody will be forced into any arrangement that is not consistent with their wishes.
The spokesperson said that easy-to-read documents were developed ”to help keep residents better informed about changes happening at Áras Attracta”.
It noted that while these documents “generally contain an acknowledgement form to ensure that residents have received the information”, it is “not a consent form and is not intended to be such”.
Review of services
Michael Fitzmaurice, independent TD for Roscommon/Galway, weighed in on the subject of de-congregation of residential care centres recently, saying the policy “needs to be stopped until a detailed review of services available in the community is carried out”.
“At the moment a policy of de-congregation of residents who are in care centres and who have learning and intellectual disabilities is being followed.
“And while a move into the community may be beneficial for many of these patients, there are others, especially those who have more severe disabilities, who may not have access to the services that they are used to if they are moved out into the community,” Fitzmaurice said.
Minister of State with responsibility for disability Finian McGrath told us he is “fully supportive” of the move away from from congregated settings.
I want to assure any concerned family members that the process of moving a person with disabilities out of a congregated setting will be a supportive one. This transition will not happen overnight and each person’s wishes will be respected.
“The HSE has put in place comprehensive transition plans, which includes extensive engagement with the person themselves, their families, carers and advocates, as well as the service provider, to ensure successful and sustainable transitions into the community.
“These transition plans also identify what resources are required to support the person in moving out of a congregated setting – funding, equipment, community resources, circles of support, and staff skill sets.”
He added that he has not yet seen a letter sent to him from Brid, he is “happy to respond to any concerns expressed” by her.
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Like in schools the term ‘inclusion’ in Ireland seems to equate to painting a picture of how wonderful things will be for the people involved but actually it just means a cut in support and finding.
Funding*
I agree with Mick! Plus, there simply are some people that require institutional care. When the state isn’t willing to pay for that care, it drags out the banner of better living in the community. Community providers have the option of refusing to take individuals who require higher levels of care and are not “cost effective”.
1/2
When these removed from reality ‘experts’ start on about “moving OUT into the community” they take into account only one understanding of the word ‘community’. What about “a group of people living in the same place or having a particular characteristic in common”? The experts completely discount the reality that for some residents, their fellow clients and carers ARE their community!
I have experience of a residential centre for clients with intellectual disability because a family member has used the service for over 30 years. Despite being big, it’s warm and homely with beautiful grounds. The staff are brilliant and have shown such love for my family member, who cannot walk or talk but who shows his contentment in many ways.
He lives among other clients with whom he shares things in common. He has the space to move freely and safely around in his wheelchair, and he loves to be on the go. It is his home away from home. He has grown up with some of his fellow clients. It is very open and friendly. He hears laughter and chatter every day. Familiar smells, sights, sounds and routine that make it home and yet enough busyness and social atmosphere to keep things interesting.
How isolating it would be for him to be plucked out of this home and plonked into a pokey house in the middle of a random town? Just so an expert can tick a box and say “there’s one more living IN the community”, missing the point that they have taken him OUT of a very valid and special community.
2/2
The community of people outside his window, many of whom he can’t relate to or won’t be able to relate to him, will mean shag all to him in this scenario. Especially when his housemates are reduced to one or two (might not even be people he particularly gets on with) and the nurses and carers he knows and loves have all but vanished. How much smaller will his world be when they remove the familiar noises, smells, the chatter of staff, people coming and going, the freedom and space that he’s always known? Not to mention reduced access to the very practical facilities he needs as cited in the article. For someone like him, who is all about sensory engagement, sounds and feelings, the view outside the window won’t mean a thing.
As it stands, he has the best of both worlds. He lives in a community he loves and is only ten minutes from a big town and village. He gets taken on outings all the time into these nearby places for tea, lunches, walks, drives.
The HSE experts want to execute their “transition” plans here too, there are talks again about this move “out into the community”. I bet you somebody has identified that the site would make a great hotel.
I just wish these geniuses would get their noses out of their textbooks and their heads out of their politically correct arses and hop into the real world. It is NOT one size fits all.
I agree entirely with your comments. There is no community care, community isolation There are no community resources, any given are short term, time limited. The onus then shifts to families, exhausted, not by the care for their relative but constant battle with the state for resources. The more difficult the needs of the individual, the less help they get. They only want people who are easy to mind! Community care is a world of loneliness and isolation. Personal assistants popping in to feed/change the person and timed to get onto to the next person. Instead of being in a supportive community and supposedly hidden away they are now more hidden living on their own as individuals in their own home. They are still pegs made to fit into one model. They just change the model, cosmetic. If they were able to live in the community they would be doing so community care has been around for at least 20 years. Great if you are able but not for all. Agree with your sentiments also a cheaper resource when services are concentrated on one site. How about individual flats on one setting rather than dispersal? My daughter has cerebral palsy is 33 but angry and frustrated. Her communication and physical limits make her difficult to manage. In resident she has support from her peers and her carers have other carers for support. For her community care does not work.
Well said
“Within resources available” The problem is there are many already in the community who have lost supports and services due to the lack of resources, such as home helps, fewer visits by PHN etc. On paper life in the community sounds a great idea, but within the mental health service A Vision for Change became A Vision for Closure, with the closure of older institutions and no or few community services materialised and where they did they were 9 to 5 services, outside of “office hours” you paddle your own canoe
I see more heartache for residents of Aras Attracta and their families.
Care in the community is a load of bull. It’s a cost cutting measure. I remember when the notion arrived in my son’s child service years ago. Everyone knew what the bottom line was money. Now my son is cared for in the community, by me, at home with a few hours a week on an outreach program(which I’m very grateful for). However, it’s meant me taking extended leave from my job and not knowing if I can ever go back. Family carers get 203 euro per week for what is often 24/7 care. I know for myself, taking care of my son and myself is both financially and timewise is impossible, so he needs take priority and I am slowly wearing out. As a result, my son who will never live independently will end up without a carer that much sooner because when I’m gone, there is no other family carer. What use is that to him? What benefit is it to him? Until the government starts to look after CARERS in the community, their whole better for the special needs individual is just rubbish. It’s not better for them that their families are thrown on a dump heap with no adequate help in looking after them.
Just want to support what Carol is saying here – ‘Care in the Community’ is an old Tory lie that has resulted in untold misery across the UK already. The removal of ‘congregated care settings’ – ie residential care – is a cost cutting exercise and nothing else. Our own youngest child is profoundly physically and intellectually disabled and we know that we’ll into our 80′s(if we make it that far!) she will be cared for in the ‘community’ by us and no one else because it’s just code for sending ‘home’ the seriously disabled and leaving their parents to drown in a sea of bureaucratic incompetence , indifference and enforced poverty while they are forced to give up work in order to care full time for their adult children until somebody dies or is unable to physically cope any more – and what then? Nobody knows. We have to try and halt this terrible Tory thinking and accept that some people will ALWAYS need institutional care for their own good and happiness and for that of their families and that is what is called SOCIETY or CIVILISATION – not abandoning them and their carers to a life of isolation and poverty which Care in the Community has already been PROVEN to do in the UK.
The more I see of this ‘ are in the community’ the more I see the HSE viewing it as another way if abdicating care, avoiding costs and responsibilities. Many patients would fare better with 24/7 support, than the isolation they experience in the community..
Witness the show race to the bottom. At the finish line? The same amount of taxes and we get to pay out of pocket for everything.
Slow*
This is just so bloody depressing. Anyone can see it’s all about the bottom line and not about what’s best for the individuals who need care or their families. And it’s all wrapped up to look like they are actually trying to do us a favour. Pretty disgusting really.
I have a real concern with this move. I have no love for the institutional style of caring which is fraught with violence and abuse but……Community Care which is in fact being championed by the EU not the state, will only be successful if the back up services & resources are in place to support this style of service. It will work particularly well for individuals with a hint of mobility and independence (such as my brother who lives it) but so many of our citizens need full time care 24 / 7 plus need night time supervision and specialist treatments and I see no plan for there. Instead of railroading this through why can the state and associated services providers not design the plan, present it to families, allow the families to assess the suitability and any short comings, amend these and once well set up them consider the move? This idea of community living is not a new one, it has been on the cards for 6 to 8 years now with test cases across the east coast of Ireland and many lessons learned through these so a plan / proposal is not impossible. The Health, Safety and security of our family members must come first, plus the most vulnerable of these must be catered to……. This would be stipulated also by the EU. I just hope the state is not taking the bits they like from the recommendations and ignoring the bits that might cost money!!!!!!
Further to my comments on this article last month, ‘Time to Move On’ by the HSE is now being rolled out in the beautiful residential setting of St Mary of the Angels, Beaufort (my brother’s community home). The family and relatives of the residents have formed an association to try and keep it open. We set up a Facebook group: https://www.facebook.com/keepsmotaopen/ if anyone agrees with us and would like to show support by sharing and liking the page that would be so appreciated. From 9am tomorrow the topic will be on Radio Kerry and will also be in The Kerryman paper. If anyone involved in the authoring of this article or those who commented and share our view would like to get in touch please DM me on Twitter. Thanks very much.
People with disabilities of all severities should be given the right to live like all other citizens of this country in a home
People with disabilities of all severities should be given the right to live like all other citizens of this country in a home
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