Cork parents’ ‘uphill battle’ for crucial disability services

While Children Disability Network Teams were set up to facilitate greater access to services such as nursing, physiotherapy, speech and language therapy for children with complex needs - parents in Cork have claimed that this is far from the reality of the situation. Darragh Bermingham reports
Cork parents’ ‘uphill battle’ for crucial disability services

Stacy Lewis on the phone at her home in Youghal. She says there is a growing onus on parents from the HSE to provide interventions for their children, shoving responsibility back on the parents. Picture: Howard Crowdy

THE lack of staff in Children Disability Network Teams (CDNTs) across Cork has been laid bare, against the backdrop of hundreds of children waiting for an assessment of need in the region.

HSE figures obtained by Cork TD Donnchadh Ó Laoghaire (SF) revealed that there are 18 whole time equivalent (WTE) vacant staffing positions across CDNTs in Cork, including vacant occupational therapy, speech and language therapy, physiotherapy and psychology posts.

Meanwhile, the latest figures show that, in just South Lee alone, more than 300 children are waiting for an assessment of need, 131 are overdue to commence stage two of the process and an additional 204 are awaiting completion of the process.

Cork/Kerry Community Healthcare rolled out CDNTs in April last year, with 11 teams established across Cork with the aim of centralising services and supports, such as nursing, physiotherapy and speech and language therapy, for children with complex needs, and providing these services in one designated area.

The CDNTs saw the removal of therapy staff from special schools across Cork, as they were reassigned to teams across the county.

While the CDNTs were set up to facilitate greater access to services, parents in Cork have claimed that this is far from the reality of the situation.

Speaking in the Dáil in recent days, Mr Ó Laoghaire called on the government to “stop shirking its responsibilities for the care of children with additional needs”.

He stated that the Progressing Disability Model, under which the CDNTs were established, is not fit for purpose.

“Therapists have been removed from special schools without a functioning alternative to accessing these crucial therapies,” said the Cork TD.

“The CDNTs in Cork are far from being up and running.

“One such team in the northside of the city, so under pressure due to staffing gaps that have never been filled, actually contacted parents encouraging them to complain to the HSE in the hopes of getting some support,” he added.

“Family representative groups were meant to be set up under Progressing Disability to allow parents to be fully engaged in their child’s care, but when I ask parents in Cork, not one has been invited to join such a group.

“One local mother was told by an official in the office of Minister of State for Disabilities Anne Rabbitte on January 28 that the funding would be given so that the therapeutic supports lost would be reinstated in her son’s special school. This has still not happened.

“To put it plainly, this uphill battle for parents in Cork, the fight for Assessments of Need, for the reinstatement of crucial therapies, for these basic things that their children have a right to, cannot continue.”

HSE: ‘CDNTs experiencing recruitment and retention challenges’

A spokesperson for Cork Kerry Community Healthcare told The Echo that “a number of the CDNTs are experiencing recruitment and retention challenges”.

“This is due to a number of factors such as availability of various disciplines and the competitive employment opportunities that are available in public and private sectors.

HSE figures obtained by Cork TD Donnchadh Ó Laoghaire (SF), pictured, revealed that there are 18 whole time equivalent (WTE) vacant staffing positions across CDNTs in Cork, including vacant occupational therapy, speech and language therapy, physiotherapy and psychology posts.
HSE figures obtained by Cork TD Donnchadh Ó Laoghaire (SF), pictured, revealed that there are 18 whole time equivalent (WTE) vacant staffing positions across CDNTs in Cork, including vacant occupational therapy, speech and language therapy, physiotherapy and psychology posts.

“HSE funded agencies have a number of recruitment campaigns underway in order to fill these vacancies,” the spokesperson added.

“Where possible, panels will be formed for current and future vacancies as well as new development posts which have been approved under the National service plan 2022.”

Concern over lack of services “keeps me awake at night”

Youghal mother Stacy Lewis said the concern and stress she feels over the lack of services for her 10-year-old son Blake keeps her awake at night.

Blake was born premature and in need of additional support, such as occupational therapy and physiotherapy, which he received in a timely fashion up until he was six years of age, when he was transferred to community services in Cork.

Stacy explained that, since then, it has been one battle after another to gain access to an assessment, diagnosis and any services.

Following a rushed HSE assessment, Stacy had to turn to private services for an assessment for Blake where he received a diagnosis of Autism Spectrum Disorder (ASD).

“He was on the waiting list for a HSE assessment for two years and at that stage, he was really struggling in school,” she said. “It was a very tough situation.

“Even after the private diagnosis, I was given a massive runaround but I pushed and pushed and pushed for it and eventually got the second assessment,” she added.

This time, Blake was diagnosed with ASD by the HSE and he has had this diagnosis for the past three years.

“Basically, he has still got nothing in terms of support,” Stacy said.

As well as ASD, Blake was also privately diagnosed with hypermobility spectrum disorder, which means that some of his joints dislocate very easily. He is waiting to attend a specialist service in Dublin following a referral from his GP.

“In the meantime, we’ve been trying to access physio here in Cork for Blake and they would not add the need for physio to his report,” Stacy explained. “I’ve had to source physio and OT privately which is very, very expensive.

“I’m basically working to pay for these services,” she added. “This is a lifelong condition and he will need these services for life, yet the HSE won’t approve it.”

Stacy explained that, with the help of support groups and charities, many children would be left with little or no supports or services.

“If it wasn’t for the likes of the Rainbow Club, Shine, AsIAm and Parents Together, which is our local group, we’d be really, really screwed,” she said.

“We fundraise all year to be in a position to offer things like play therapy, music therapy, cookery classes and more of these things and life skills that children with autism need to learn.

“We also bring in private OTs, physios, speech therapists, play therapists and more to provide them for families at a reduced rate.

“If we didn’t have these organisations fundraising all year, it would be almost impossible to get these vital services,” she added.

“We were promised that this new system, the CDNTs, would work and would provide the support we needed but we have no team.

“That hasn’t been the case at all - we’re only a year into this new so-called service and we’ve no team.

“We’ve just seen regression after regression after regression. It’s keeping me awake at night.”

Stacy revealed that her brother, who is 40, also has ASD.

“It seems like nothing has changed in terms of the actual services they get even after all these years,” she said. “I want my son to be as independent as he possibly can be. I don’t want him living at home with his elderly mother with no ability to look after himself.

“I know that for some children with autism, that level of independence might not be possible, but I know that my son, if given the right services and support, can be a fantastic member of society,” she added.

“They’re not being given the chance to be a participating citizen under the current state.”

“You just feel helpless at every turn”

Ballyphehane mother Claire Reardon said it has been nothing but battle after battle to secure any services for her son Darren, aged four.

Darren was referred for speech and language therapy and occupational therapy in 2019, before he received his formal diagnosis of ASD.

“Before he was diagnosed, Darren faced a wait of around five months for SLT and OT but when he was put forward for an autism assessment, it was two and a half years before he saw someone,” Claire explained.

When Darren was transferred to Enable Ireland’s premises for services, Claire said she was initially delighted upon being told of all the supports he would receive but that this feeling did not last long.

“They asked what his goals were and I said he’s been struggling in the shower, with going to bed and with communication as he was non-verbal,” she explained.

“They said they’d be back in touch but then told us he wasn’t eligible for speech and language therapy.

“I was told that what I’d gotten, after two and a half years of battling, was half an hour’s advice on how to shower him and half an hour’s techniques on getting him to bed,” she added. “I was like ‘is that it? Is this the service we get’.

“Why would they prioritise him going for a shower over being able to talk? That’s just crazy.

“Myself and my husband had to then battle for that as well and we eventually managed to get some speech and language intervention because he was four and non-verbal, so they had to admit he needed it.”

In the meantime, Darren had also applied for Sonas Special School in Carrigaline, an early intervention in autism preschool.

“While we were battling the HSE for services, we had it in the back of our mind that he would be going to Sonas where he would surely be receiving these services while at school,” Claire explained.

“However, when he got his place, I was talking to the teacher about the speech and language therapy at the school and she said they didn’t have it any more.

“Basically, all of the OTs, SLTs and physios had been taken out of Sonas and every special school in Cork and had been redeployed into the paediatric network to take the posts there,” she added.

“I got onto my TDs and the Ministers because I was so cross, wondering why they were taken out of a service that was working and put into one that was not. Eventually, I got a response in January from Minister Rabbitte’s office telling me that this support had been taken from the schools but had since been reinstated. “But obviously that’s not the case unless there are OTs and SLTs hiding in the cupboards in the school.”

Last year, the issues with removing therapists from special schools were laid bare when teachers in Darren’s class told Claire that they suspected he might have low muscle tone.

Before April 2021, the teachers would have asked the physiotherapist to assess Darren in the classroom. The physio would then provide an intervention for the teachers to deliver, and then carry out a follow-up assessment a short time later.

However, since early last year, when physios were pulled from schools and placed on CDNTs, the responsibility has fallen to parents.

“I had to ring my key worker and the request was passed onto the physio,” Claire explained. “Darren was given an appointment to be seen, which meant he actually missed some school, and the intervention was provided.

“They won’t liaise with the school at all - I have to be the point of communication between the schools and physio,” she added.

“Then, there are no follow-up sessions unless we chase them ourselves.

“Children with autism do not get any support and they’re not even getting support in school any more. You feel helpless at every turn.

“It feels like there’s no support other than yourself, your husband and your family just trying to keep it together.”

In her work with adults, Claire has worked with past pupils of St Gabriel’s Special School in Cork, where students would have received in-school support up until last year.

“I’ve seen the reports and how those supports in schools worked for these people, the positive impact they had. But these supports are gone for my child and many others now.”

Onus on parents to provide intervention

Both Stacy and Claire said there is a growing onus being placed on parents by the HSE to be able to provide interventions for their children.

They both stated that this merely foisted the responsibility onto parents, rather than the health service.

“I’m not trained as an OT, SLT or physio,” Stacy explained.

“These people have gone to college for four years or more and have been trained extensively whereas I haven’t. Yet, I’m expected to be able to learn about it and provide the same level of support for my child,” she added.

“I honestly don’t know if I’d be doing more harm than good. This is not the way things should work.” Claire added: “The responsibility is being completely fobbed off onto the parents.

“I work with adults with intellectual disabilities but my expertise is not in children. I’m on a course with a speech and language therapist at the moment aimed at providing some intervention for Darren but I’m terrified that, once that’s over, there’ll be no further intervention for him. There’s an expectation to be a SLT, an OT and a physio and I’m not any of those things — I’m a parent with two other young children and it’s just a constant struggle.”

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