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Parents have said the HSE has shown a lack of compassion as they tried to explain their children are not receiving the same level of service provision as they were pre-Covid.
Disability Services
Parents 'bawling their eyes out' as HSE relocates on-site therapists from special school
The changes were made as part of the roll-out of a new centralised model of disability services.
THE PARENTS OF children who attend a special school in Dublin have said they feel the State has abandoned their families after all on-site therapists were removed from the school.
The children who attend Carmona School in South Dublin have severe to profound intellectual disabilities, they are all non-verbal and several are fed through a tube and require respiratory help.
Up until recently, clinicians who provided speech and language, occupational and physio therapies to children at the school were based on site and were available throughout the school day if required.
Now, as part of a centralisation of disability services, all on-site clinicians have been moved from Carmona, despite assurances from the government that the level of service provided to the 36 children who attend would be maintained.
Andrew Murnaghan, whose daughter attends the school, told The Journal that parents have been fighting “tooth and nail” to try to explain to the HSE that it is not longer providing the same level of services and they now feel their children’s health is seriously at risk.
Parents have said there have been three previous medical emergencies at the school involving choking and respiratory issues and the therapists, who have specialist training in these areas, were on hand to deal with them immediately.
“These children can have medical emergencies at any time, eight or nine are in wheelchairs, if they give a bit of phlegm they can’t cough, they need postural drainage from the lungs, they have respiratory issues, they are all non-verbal so they can’t tell you if the are in difficulty,” he said. “There are serious risks here. It’s outrageous.”
The PDS model
The changes rolled out by the HSE are part of the Progressing Disability Services for Children and Young People (PDS) programme, which involves the reconfiguration of specialist therapy services into 91 Children’s Disability Network Teams (CDNTs).
The aim of the new programme was to ensure all children with disabilities across the country would have access to a team of specialists where they live or at the school they attend.
Murnaghan said there has not been a speech and language therapist at the school since February.
He said parents have been told that the same number of allocated clinical hours for speech and language, occupational and physio therapies are still being provided, but he said those hours “were not reflective of what was going on on the ground” when therapists were always available at the school if an urgent intervention was required.
“Children don’t have emergencies by appointment,” he said.
I’m shocked as a parent of a child with a disability, let alone an advocate for parents, at the indifference of this organisation to the concerns of parents. There are mums and dads bawling their eyes out about this. They rely on the school, the staff are miracle workers and they’re having support taken away from them.
He said the HSE was “robbing Peter to pay Paul” by relocating on-site staff to fill posts on the new centralised teams.
“The model is a fantastic idea but you don’t help somebody over there with a moderate disability by taking away supports from those with the most severe and profound disabilities,” he said.
“It was never the intention of PDS, the intention was to make it more equitable for society, not to pull supports from the most vulnerable kids. There just doesn’t seem to be any compassion.”
‘No reduction in services’
The development of these area-based teams caused controversy earlier this year when it first emerged that on-site therapists were being relocated from special schools to fill posts.
At the time Minister of State for Disability Anne Rabbitte ordered the HSE to pause the programme and review the services in special schools to ensure they would fully benefit from an enhanced provision. She also secured the approval of an additional 85 therapy posts.
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In a statement in July this year, Minister Rabbitte said the HSE had confirmed that “existing therapeutic on-site services provided to the small number of special schools will continue to be provided”.
“There will be no reduction in services to this group of children, while services will be delivered in line with the PDS policy under the governance structure of the newly configured local children’s disability network teams,” she said.
The issue was raised again with Minister Rabbitte in a Dáil debate on Tuesday evening.
Fine Gael TD Jennifer Carroll MacNeill told the minister that Carmona “is not a school, but a centre of excellence for children with severe to profound intellectual disability”.
“As an example of the need for on-site clinicians, one patient is a boy of senior infants age but he is not in senior infants and never will be,” she said.
“He is not going into first class either. His number one learning goal this year is to bring a spoon from a bowl of food to his mouth and back down again. He has three therapy-based learning goals.
They do not involve reading, writing or arithmetic. That is not on the cards. Three are four adults and five children in this room because that is what the children need. Both of that young boy’s hips are dislocated. If he is uncomfortable or in pain, he has no means of shifting his position.
“He needs constant therapeutic oversight and support to prevent scoliosis and to help him to communicate. There is no way of deconstructing his therapy and learning needs.
“Another girl who is ten years of age cannot communicate at all. The speech and language therapies are not there for her. As a result, her behaviour is regressing because she cannot communicate her frustration. She cannot communicate anything to her family. She does not sleep much.”
Her party colleague Neale Richmond said that while the HSE had returned staff to their pre-Covid allocated hours, “it is much less than the service the school provided prior to the pandemic”.
“There has not been a speech and language therapist in the school since February,” he said. “There are extremely vulnerable children at risk who are not receiving the duty of care from the State in the school. It is not good enough.”
Minister Rabbitte said she acknowledged that Carmona “is not a school in the ordinary sense” and that, having met parents on a number of occasions, she knew the difficulties they had faced during the roll-out of the PDS model.
She said she had been informed on Tuesday by the HSE that the Children’s Disability Network Teams manager had increased the clinical resource in additional to the original allocation “on a temporary basis” from the existing team.
A meeting will also be scheduled between parents, the CEO of Enable Ireland, the HSE chief officer for the area, the disability head of services, and the CDNT.
“While they [the agencies responsible for the roll-out] may not need to be made to understand, perhaps they need to be re-informed and retold that this situation is not like everyone else,” she said. “It is a little different.”
Minister Rabbitte said she will not “be found wanting” for what is required to fill the gap at the school.
“Whatever the outcome, I just want an outcome from the HSE, which is to tell me what the shortfall is so we can ensure delivery of services in Carmona and get on with delivering services and rolling out the PDS model,” she said.
In a statement to The Journal, Martina Queally, HSE chief office for Community Healthcare East, said both the HSE and Enable Ireland, which are the lead agencies for CDNTs in the area, are actively recruiting to fill the new posts approved by the minister.
“The allocations of therapists to special schools at the level which existed prior to the Covid pandemic have not been removed from any of the schools in the area,” she said.
“From the 13th September 2021, the therapists from the Children’s Disability Network Team (CDNT) will be in attendance at the school as per the existing allocation outlined by the Minister.
“The intervention provided by the therapist may be in the classroom/clinic space in special schools and/or at home as required.
“In addition, under the CDNT service delivery model, the children that attend the special schools will have access to all the therapies available within the team if deemed beneficial for the children to achieve their goals.”
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The HSE is not about health care anymore. They are actually a danger to peoples lives in this country now. How many cheques to they write every week in Irish courts to pay for their incompetence?
It is time it was disbanded before more people die in their “care”.
“I make no apology, I pick the side, I continue to pick the side of children with additional needs” Normal Foley 21/01/21. (But only when it suits she forgot to add)
@EMD: That statement, above all her other statements at the time, showed just how out of her depth she is. Even in this context, talking about picking sides in the middle of a dispute demonstrated a worrying lack of experience and diplomacy. She’s only ever been on the side of the department and that shows in all her actions to date. Remember the “schools are safe” mantra that was repeated ad nauseum and was clearly nonsense. She was only ever on the side of the department. One of the worst minsters we’ve seen for some time and that’s saying something.
Right they want the hospital Services to be regionalised rather than centralised As they now are but want this service centralised , time to say stop to the HSE monster and it’s overpaid management
The aim of the programme is to ensure all children with disabilities across the country would have access to a team of specialists where they live or at the school they attend BY REMOVING SAID SPECIALISTS FROM THE SCHOOLS THESE KIDS ATTEND?? The HSE is an utter joke, no doubt this amazing idea was formulated by one of the many, many middle managers in order to justify their position.
@Football in the Groin: my son goes to Carmona the staff are amazing.
It’s beyond belief the manoeuvres being pulled, the double speak, and ultimately the disregard for the children. We are heartbroken, betrayed and exhausted. The comment above about it being an “inconvenience to parents”is so hurtful, I’d put all the kids on my back and crawl across the city for services l if I thought it was the right thing to do.
@Trev Mooney: Good man. Yeah that person above is reprehensible. We fought the HSE tooth and nail for around 3 years to get a diagnosis for my son (which I won’t go into). They did everything in their power to NOT help and pretty much every one of their staff we dealt with seemed so cold and lacked even a shred of empathy. That person above reminds me of how they spoke which is why I called her out as an employee! Horrible. Best of luck with everything.
@Football in the Groin: hope things are improving your side, we’ve obviously shared experience here. While they’re fighting to protect their interests, positions and jobs we’re battling to protect out kids. As long as there is breath in us we’ll fight on of that I am sure. Shameful stuff as ever from an uncaring “executive”.
@Football in the Groin: it’s ridiculous. My daughters service was 10 minutes from home. Now because of Pds it is 40 minutes from our home. The complete opposite to what they said they were doing. I really feel for all those children that will lose out on vital time in school for appointments. It is a lifeline for parents of children with profound disabilities too who will spend their whole life looking after their children. To have just one appointment taking off their plate makes such a difference
@Em Watson: Of course. I can’t fathom the comment on causing inconvenience to parents. What of all their other children and commitments? They had a difficult routine and put effort into making it all work because it really helped one of their children. To disrupt that is anti-social and bad for anyone’s welfare – naturally parents are speaking out about their distress. Why shouldn’t they?
@Trev Mooney: I’m so sorry to hear this. As someone who’s been fighting a HSE disability policy on behalf of my profoundly disabled brother for the past few years, double speak and manoeuvres being pulled sounds all too familiar.
I would advise you to try and connect with parents in special schools across the country as soon as you can. I strongly suspect that this action by the HSE is not unique to Carmona, nor is it accidental or unintentional. My suspicion is that the removal of vital supports from special schools is part of a deliberate strategy by the HSE to undermine the special school system. By connecting with other schools you’ll be able to learn from each others experience and confirm if this is the case. If it is, you could all form a united front against the new DBS centralisation strategy which is the official means by which your services are currently being taken away (“nothing to see here, this is an improvement policy, etc”).
I think that what’s happening now in your school now is part of a broader objective to get rid of special schools entirely in favour of mainstream schools for all. I would put money on it that a HSE policy to this effect is being drafted as we speak.
Although such a policy would be welcomed by the majority of disability advocacy groups (many of whom are HSE funded), the HSE know from experience that they need to publicly undermine special schools in order to get widespread buy in. Experience will also have shown them that the way to do this is to defund or remove the essential expertise which is vital for those currently using the service. They won’t stop and they’ll let the situation deteriorate to the point that there will be a lot of negative press about special schools and how they’re not fit for purpose. This will then be used by the HSE and advocacy groups as evidence to justify the new policy (which in all likelihood will aim to close special schools within X years and relocate all children to mainstream).
When you’ve had the experience with the HSE that our families have had, their methods become so transparent and obvious it’s almost embarrassing that they continue to get away with this. It’s the same game again and again. Same method and motives. Whatever you do, don’t trust a word they tell you or put any faith in them. I strongly urge you to connect with as many schools as you can, form a united front now and get out ahead of this before it’s too late.
My heart goes out to you. If you want any more information feel free to DM me on Twitter. Apologies, I’d written you a better more coherent and helpful reply but it got lost as I wasn’t logged in and I found it hard to rewrite this as the issue is so close to my own it really breaks my heart.
@Lil2380: I should’ve added here that this strategy isn’t just about getting public buy in. If there is in fact going to be an official HSE report proposing the elimination of special schools, the HSE will need their appointed working group to make a compelling case for this in their report. In order to make a compelling case, the group will need to do research and conclude that children with severe and profound disabilities are no better off in special schools than they are in mainstream schools. This isn’t true now or at least hasn’t been true to date, so the HSE have to make it true. And to make it true, they have to destroy special schools. This is a well worn chapter in a HSE playbook. None of it is new. All of it is predictable.
From.my experience there’s no benefit to in school services. So a centralised service is better and fairer for all. In school services are only convenient for parents because they don’t have to take their children out of school for appointments or take time/days of work themselves to accompany them. An onsite nurse being the one exception, which every school should have in my opinion.
@Marie Broomfield: what experience would that be? These children are very often not in a “local” school but wherever there are places for them.
This can involve parents having to drive many miles to pick their child up and bring them to the centre.
If the parent is working they then have to take time off from their jobs too.
But the biggest problem is staff who are supposed to be helping the children reach their goals in school hours are completely excluded from the therapeutic process and takes away the actual purpose of special schools which after all are not conventional education but are there to teach these children life skills.
And why shouldn’t these parents be saved these trips in snd out to these centres? Trust me they have enough to be doing and worrying about already!
@Marie Broomfield: unless your experience is in a special dependency setting like that outlined in the article, it’s not a standard school after all, your experience isn’t worth much in this case. Care to elaborate on your extensive, and relevant, experience?
Typical of our current government to hit the most vulnerable of our society the hardest, barefaced lies told to those parents. Look at all the gofund pages set up to help Irelands disabled childrens cause this government is failing them.
My heart goes out to the children, families and teachers in special schools who are going through this. As someone who’s been fighting a HSE disability policy on behalf of my profoundly disabled brother for the past five years, this is all too familiar.
This story is not unique to one or two special schools and I’d wager that services in many special schools around the country have been quietly cut back or removed for some time. I predict this will only escalate as the new PDS programme continues to roll out.
I believe that the true intention of removing these vital supports and expert staff and services from special schools is not to facilitate PDS but rather it is a deliberate strategy by the HSE to undermine the special school system as a whole.
I think that what’s happening in this school is part of a broader longterm objective to get rid of special schools entirely in favour of mainstream schools for all children no matter how severe or profound their disabilities or how complex their health needs. I would put money on it that a HSE policy to this effect is being drafted as we speak.
Disability advocates have strong ideological objections to the existence of special schools and a policy to eliminate special schools would be welcomed by the majority of advocacy groups (many of whom are HSE funded). However, many parents who’ve seen firsthand how appropriate special schools have been for their children would naturally oppose such a policy. The HSE know, therefore, that in order to get widespread support for this move, they need to first publicly undermine and invalidate special schools. Experience will have taught them that the way to do this is to defund or remove the essential expertise which is vital for service users.
The HSE won’t stop at one or two schools and they’ll let the situation deteriorate to the point that there will be a lot of negative press about special schools in general and how they’re not fit for purpose. This will then be used by the HSE and advocacy groups as evidence to justify the new policy (which in all likelihood will aim to close special schools within X years and relocate all children to mainstream).
Public buy in is not the only aim. Any official HSE report proposing the elimination of special schools, will need to make a compelling case for this move. In order to make a compelling case, the working group (comprised mainly of advocates who will be bringing their own biases and agendas) appointed by the HSE to write the report, will need to research special schools and conclude that children with severe and profound disabilities are no better off in special schools than they are in mainstream schools. This isn’t true now or at least hasn’t been true to date, so the HSE have to make it true. And to make it true, they have to destroy special schools. This is a well worn chapter in a HSE playbook. None of it is new. All of it is predictable.
When you’ve had the experience with the HSE that families like mine have had, their methods become so transparent and obvious it’s almost embarrassing. It reflects very poorly on politicians who are either unable or unwilling to see this for what it is. It’s the same game again and again.
I urge parents and staff in these schools not to trust a word the HSE tell you or put any faith in them and do not involve official advocacy groups unless they tell you categorically that they support the existence of special schools. I strongly urge you to connect with as many other special schools as you can, form a united front now as teachers and parents and get out ahead of this before it’s too late.
By connecting with other schools you’ll be able to learn from each others experience and confirm if this is in fact strategic. If it is, you could publicly campaign against the proposed strategy for the PDS programme which is the official means by which your services are currently being taken away and will continue to be (“nothing to see here, this will be a better and fairer system for everyone, etc”).
It has been gut wrenching to see the minority of adults with profound physical & intellectual disabilities (4%) like my brother and those with severe disabilities (15%) being steamrolled by the HSE’s 2011 Time to Move on from Congregated Settings policy. The dismantling of campus based settings by chronic underfunding began around the recession, at the same time work on that policy began. Many fantastic, well equipped, expertly staffed, beautiful, comfortable homes where people had onsite daily access to essential health therapies and expert care – communities in their own right – were driven into the ground, destroyed and made unsafe. So many vulnerable adults were forced out of their lifelong homes and forced into living situations which for some, had serious consequences. Five years ago, a former CEO of a prominent Disability Advocacy Group told my family member it was well known that the HSE deliberately ran campus based centres into the ground so Hiqa would close them. But the advocates didn’t publicise this or try to stop it (despite the suffering it meant for vulnerable people they were supposed to represent) because their own ideological opposition to the existence of such places was so strong. The same is true for special schools and that is why I urge families to learn from our experience and act now. Don’t wait until so much damage has been done to special schools that the general public will no longer support their existence and will support a policy to close them and force all children into mainstream schools (or units attached to schools which will be far inferior to the special schools they once had).
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