A mother of two children with autism has said the HSE’s disability services are in meltdown and in particular she highlighted “a complete lack of services in Enniscorthy”.
heresa Carr-Buckley, from Clonroche, has two sons, Cormac (10) and Pierce (13), who are both on the ASD spectrum.
A social worker by profession, Theresa is a full-time carer for her two sons who are both non-verbal and require specific additional supports.
“At the moment there are no staff in the CDNT in Wexford and Enniscorthy and there are just no services there whatsoever,” said Theresa.
“I am a mother of two autistic children and my eldest lad hasn’t received any services for the last six years and he’s regressed in lots of ways,” she added.
“He’s having outbursts in school, meltdowns, and he needs to be seen by a psychologist, a psychiatrist and OT. They are the main ones that he needs to be seen by at the moment.”
However, Theresa said that because her son hasn’t had access to any services within the last six years he has regressed dramatically.
She said that in 2018, her son, Pierce, began to self-harm and engage in self-injury behaviour and biting.
“He started this hand-biting and having dramatic meltdowns and I contacted the HSE and I asked for Pierce to be seen by CAMHS and I was told that he wouldn’t be seen by them because he has autism spectrum disorder,” said Theresa.
“I then went privately about it and I got a letter back from the psychiatrist saying ‘sorry, it’s not our problem’ because he has ASD he has to go to CAMHS and when I wrote to them they said they couldn’t see him,” she added.
Theresa said that scenario is part of a much bigger problem and that the bottom line is that children are being sent back and forward but the end result is they’re not being seen by anyone.
“I am not the only one in this situation and I know several other parents who are in this situation,” she said.
“The thing is the child is suffering, he’s getting no access to services and he has got progressively worse over the last six years and it is dreadful the situation that we are in at the moment.
“At the end of the day Pierce got a Neps psychology report done in 2020 and in that report it said Pierce has a learning disability,” said Theresa.
“He doesn’t have a learning disability,” she added. “He has ASD and a straight diagnosis of autism.”
She said that report was done to get him into a special class in any of the local school because he was leaving St Senan’s primary school and going into secondary.
“That Neps psychology report had to be done before got a placement in a special class,” said Theresa.
However, she said that because Pierce is non-verbal and because of the way the system is set up with the psychology report he is deemed as a child with a learning disability.
“He’s received a label that he didn’t actually have but there is an upside to this, and it’s a bit twisted, because for him to see a psychiatrist, that will get him in to see one,” she said.
She then outlined what she regards as a major fault in the system in terms of parents trying to get their children access to services.
In particular she highlighted an apparent anomaly whereby a child who is diagnosed with ASD and might need access to a psychiatrist doesn’t get that access because of the fact they are diagnosed with ASD.
However, they have a better chance to get access if they are diagnosed with a learning disability.
“If he gets a label – even though it’s not a correct label – it gets him in to see a psychiatrist,” she added.
“If he has a diagnosis of ASD he doesn’t get to see a psychiatrist,” she said.
“That’s the twisted world, and how broken the system is,” she added.
Theresa had to send that psychology report into the HSE to get Pierce access to a psychiatrist.
Theresa said that a further diagnosis of ADHD also went “under the radar” because of the fact Pierce hadn’t been seen by anyone for six years.
“If he had been getting his services continuously since he was diagnosed he would have been diagnosed with ADHD but it’s only coming to light now that he has that as well as autism spectrum disorder,” she said.
“However, if he had been getting the continuous services that he was entitled to that would have been flagged,” she added.
Theresa also applied for respite services in October, 2017, which resulted in the HSE offering her seven hours in Blackwater in 2018.
“However, I live in Clonroche and I would have to travel for three hours every second Saturday, which I refused because obviously it wasn’t worth my while,” she said.
“I refused those hours because of the distance I would have to travel from Clonroche to Blackwater and the HSE came up with no alternative option for respite,” said Theresa.
With regard to Enniscorthy, Theresa said there are no respite services of any kind available to people in the town or surrounding areas.
“That respite service that was offered to me back in 2018, was offered as an alternative to Pierce biting and the self-injury behaviour,” she said.
“That was what was offered to me,” she added. “He was offered a place on a camp because of the self-injury behaviour, because they had no services to offer me.”
With regard to her younger son, Cormac (10), who is also non-verbal, Theresa said he’s also getting no access to services.
“He wouldn’t be as severe as Pierce but he also doesn’t have any access to services whatsoever,” said Theresa.
She said that in April, 2021, Cormac finished a batch of OT [Occupational Therapy] that he had waited to access for three-and-a-half years.
“He was three-and-a-half years waiting for a block of OT, and he had just finished one half of it when the pandemic hit so the other half of it was completed then in April, 2021.”
When asked what she feels needs to be done to get the system on track to where it should be Theresa said the aims of the Dreambig project which she is involved with are specifically geared towards that.
“That is where the answer lays because it’s the first neuro-diverse social enterprise in Ireland and there are many branches to it,” she said.
She said what needs to be done – and it’s something the Dreambig project hopes to establish – is the setting up of a multi-disciplinary team so that when someone receives a diagnosis that team would be set up for the child and services would be accessed at a discounted rate compared to what people have to pay privately.
“We are looking at diagnosis to end-of-life so you would get your diagnosis for your child, get all the multi-disciplinary team together, even going through school and all that, and then you come into the project and you would get training and employment and that would then bring you right down to end of life,” said Theresa.
“We are also looking after the whole family through what we will call the wraparound programme, so from a holistic point of view it’s not just about looking after the individual but also the whole family,” she added.
It’s hoped that training empowerment courses will be provided through the project and while a presentation on the project was made to the local authority in New Ross already, Theresa said the plan is to make a presentation to Enniscorthy Municipal District in the coming weeks as well, along with further presentations to the other local authorities in Wexford. It’s also planned that the project will expand into County Waterford too.
“We are hoping to provide a service where parents will come and they will be able to get information on what they are entitled to,” she said.
“Basically, we would be putting together a care plan for the individual which would include access to the multi-disciplinary team and that would be supported right through the person’s life,” she added.
A major problem at the moment too is how a lot of children fall out of the HSE’s services after they reach the age of 18, and Theresa said that’s wrong because even though they are technically adults by age their ASD and need for supports doesn’t go away.
“They get no services and that’s why this project is very specific and the individual will be taken care of from diagnosis right through to end-of-life and it’s what should be in place anyway but isn’t,” she said.
“People live with their autism spectrum disorder right through their entire life so that person needs to be supported the whole way through,” she added.
Theresa said the motivation behind the project is real people experiencing lack of access to services that should be there in the first place.
Theresa said that in New Ross there is a Rainbow youth club that has over 40 local children involved who are all neuro-diverse, however, there is not such initiative in Enniscorthy.
“Those children have nowhere to go when they turn 18,” she said.
“In Enniscorthy they don’t even have a youth club of any kind and if there’s nowhere for these kids to go they are in danger of falling into crime and anti-social behaviour,” she added.
“Some of these children as they get older fall into very serious situations and that’s something we are hoping to prevent.”
Theresa said the situation in Enniscorthy is very serious because “there are no services at all”.
“We are hoping to help set up a youth club in Enniscorthy but there are absolutely no services in Enniscorthy at all, absolutely nothing,” she said.
“Things would be a lot worse only for these charity organisations that are being set up because at the moment the disability services within the HSE are in meltdown,” she added.
“There are no multi-disciplinary teams at all,” she added.
“The lack of services for our children is catastrophic and it’s causing long term damage that can’t be undone.
“Regardless of whatever diagnosis you have, you can’t access the services, not just the autism services, it’s every service that’s affected,” said Theresa.
“These are little human being and they are not being treated anything like they should be and it’s just wrong.”
The HSE South East Community Healthcare can’t comment on individual cases, even if a family goes public about their particular situation.
However, when asked recently about the perceived lack of services for people with autism in County Wexford, a spokesperson acknowledged the challenges meeting the demand for children’s disability services and how it impacts on children and their families.
In a statement the spokesperson said: “The HSE’s Disability Services are working to alleviate delays for our service users and their families, through the rollout of the Progressing Disabilities Programme across the country. Progressing Disabilities Programme (PDS) is a national programme to reorganise children’s disability services.”
The spokesperson said PDS will change the way children aged 0-18 years and their families access and receive clinical disability services.
He also said it aims to “provide a fairer pathway to clinical supports”.
Children’s Disability Network Teams (CDNTs) have been established to provide services and supports for all children with complex needs within a defined geographic area.
The teams are composed of health and social care professionals, including nursing, occupational therapy, psychology, physiotherapy, speech and language therapy, social work and others.
The HSE spokesperson, said the teams work closely together in a family centred model, focusing on the child’s and family’s own priorities.
“Every child with complex needs arising from a disability will have access to a team, regardless of the nature of their disability, where they live, or the school they attend,” said the spokesperson.
“It is the objective of the CDNTs to ensure that all children will have timely access to the appropriate services,” he said.
However, he also ; however said the CDNTs have experienced significant challenges as well as finite and limited publicly funded resources assigned to each network in addition to the ongoing impact of Covid-19 pandemic.
“There are a number of vacancies due to difficulty with recruitment and statutory leave,” said the spokesperson.
“However, the lead agencies responsible for the management of the teams are prioritising the recruitment of such posts,” he added.
“When the demand for assessment and intervention outweighs the resource capacity of the teams, children with the highest priority of need can access services and other children with a lower priority of need are placed on the appropriate waitlists.”