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WE’VE BEEN WAITING for over a year for my five-year-old son’s assessment of need with the HSE, with no sign of an appointment yet.
He has had significant speech delay, it’s a struggle to understand him and he gets frustrated easily.
Based on our own research, we think he has sensory processing disorder, an attention deficit disorder and is probably on the autism spectrum, but he hasn’t been seen by anyone qualified yet.
In January, after five months on the waiting list, I was told by our local disability officer that it would be a few more months to get the initial appointment.
They recommended I lodge a complaint with the HSE about missing the three month deadline as they are badly under-resourced and there’s no way for them to meet the three month commitment.
They added that the more complaints that are lodged, the more of a case they can build with the HSE to get more resources.
So I did, and of course it did nothing. I got a boilerplate letter in the post. Then the pandemic hit and they kindly let us know that everything was now on hold indefinitely.
‘Lost so so much’
The average waiting time is 19 months, in spite of legal requirements stating that the HSE should commence an assessment within three months and complete it within six months.
We’re still waiting. My son has missed out on six months of socialisation and development since March. He also missed out on all the prep for big school which they had planned in the last few months of playschool.
He’s my happy, loving, sensitive, bright and clever little boy but he has difficulties which have seriously impacted him, even in the warm, sheltered and very relaxed environment of an excellent playschool with very low student-teacher ratio.
In February, we were cautiously optimistic about him starting primary school. After 18 months of one-to-one dedicated teacher attention provided by the Access and Inclusion Model (AIM) in playschool, he had finally started to engage in group activities and make friends. That’s all gone now. He’s lost so so much.
And there’s nothing to replace it. There’s not a hope of him getting a special needs assistant (SNA) in primary school.
He doesn’t have a diagnosis so he’s going from a long-distant playschool environment where the child-teacher ratios were three-to-one, with a dedicated teacher who spent 80% of her time with just my son, to a primary school environment.
The teacher ratio, in a good year, will be 30-to-one as opposed to three-to-one. Not only that but in a rushed and underprepared pandemic setup that no one really understands.
Starting primary school was always going to be difficult but now I am concerned that it won’t just be difficult, it will be deeply traumatic and damaging. I just don’t know how he’s going to cope.
My child is (probably) autistic with ADHD and can’t talk clearly. How the hell is this supposed to work?
‘Nothing happened and nothing changed’
In May, I contacted some of my local TDs in Wicklow about the impact of lockdown on children with special needs. Jennifer Whitmore of the Social Democrats raised it in the Dáil. Minister for Children Katherine Zappone, before she left office, said someone would look into it. Nothing happened and nothing changed.
Health Minister at the time, Simon Harris, said Minister Zappone would look into it and offered to check up on the status of our assessment of need application and complaint. Following this, I got another boilerplate response from the HSE.
We’ve gone from being cautiously optimistic in February to being desperately worried. The HSE children’s disability services are a complete joke.
I haven’t looked into private options. My understanding is if you get a private diagnosis it isn’t recognised by the HSE so you wouldn’t get access to any of their services or school supports.
While we could probably afford the private assessment, there’s no way we can afford paying for long term treatment or resources.
When this issue was raised in the Dáil last month, Tánaiste Leo Varadkar said that “children are waiting for too long to get an assessment” and that this “puts a lot of stress on them and on their parents and families”.
Words are not enough. My child is one of over 5,000 waiting more than six months for an assessment, with it now indefinitely on hold. This is disgraceful. It is time for the Government to properly resource the disability service in order to help our children to thrive rather than deteriorate while waiting.
The author wishes to remain anonymous.
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If you think the wait for assessment is long wait to you see how long it takes to start working with a child once there’s a diagnosis
I honestly feel desperate for you. It’s heartbreaking to see windows of potential pass by. My son actually outgrew a list he was on and became too old to qualify. that was after we lost 9 months after the HSE sent his referral to long since defunct address. They were very apologetic and embarrassed but that’s how it is. The left hand doesn’t know what the right hand is doing. He’s doing pretty ok now but it’s just by luck his needs are not more acute because he would not have got what he needed. I wish you the very best
It’s an absolute nightmare my son is also 5 I’ve been trying nearly 3 year’s and still in limbo like thousands of people I didn’t even know if my son was going to start school was able with help from the teachers in his playschool get an exempt from school so he could do another year in playschool whilst we wait for his assessment.
Of course the HSE accept private reports and diagnoses.. however there are a small minority of private companies and psychiatrists whose assessments may not be fit for purpose and children are given unnecessary labels and misdiagnoses without a proper and best practice assessment. it is scandalous. Parents have to be so careful about choosing a reputable private company. The Assessment of Need system is not fit for purpose and our children are suffering greatly. Early intervention is proven to be most affective.
We got a private assessment for our boy and I do believe the HSE accept it. However the HSE assessment came roughly 6 months later. We fought like crazy, made all the complaints following all the guidelines to eventually get what we needed. We went private because we couldn’t depend on the system to get the diagnosis in time. The HSE assessment agreed with the private one. “Luckily” our boy is high functioning but everything was a struggle and we now know we will have to fight for everything he needs from now on. The health system is a joke and it’s why the current crisis is as bad as it is. It won’t take much to overwhelm our health service. Great people…shit resources…
All services for children with additional needs in this country are a disgrace. Look at the decades long delays with scoliosis surgery. For most people they see it in the papers when a child is living needlessly in severe pain and then they think it’s sorted when that child gets surgery. It’s not. It’s a never ending cycle of crisis, promises from the HSE/ government of the day, missed targets and then crisis again and on and on. There’s still hundreds of children waiting for all manner of surgeries, investigations & equipment. I was told my child has to wait two years for an MRI to see if they have a silent condition with irreversible life long consequences. You might say why don’t you pay privately? But it’s not possible for a small child to get it done privately as they need sedation.
It’s such a non functioning system in the hse. It’s so dreadful! And hate to say something that shouldn’t even be said, but I would 100% go privately with ur child. You shouldn’t have to go private and that is a disgrace but I think it’s the only way to get the best for you’re child & in their interest. I would struggle to find the money to pay privately but I would find it somehow. It’s heartbreaking that kids like this are missing out on valuable intervention
So much of that resonates with us. We sent off our assessment of need 14 months ago , lodged complaint and are still waiting. We did go private in the end, but I made sure rhe HSE recognised it and just contacted school age team myself , they accepted the diagnosis and my child has been placed on their waiting list now another 20 months before we reach any actual services !! The system is so wrong, luckily we’re in the position to pay privately but thats at a huge cost to us financially and sacrifices have to be made , no new car ,no big holiday. But it’ll be worth it, we need to invest in the kids at an early stage to help them become the best version of themselves.
If you can afford it, I would suggest you get a private diagnosis. The wait for free assessment is not worth the loss of time re intervention, especially if starting school
I don’t understand stories like this. You are never alone in Ireland but this idea you sit around waiting for government support is dangerous. Politicians are to busy to bother about 5000 children unless your offering them an allowance and expenses.
There are many ASD charities in Ireland who do care about these 5000 children. AsIAm, Irish Society for Autism, Snowflakes, Aspire Ireland and even a charity that makes dogs available to assist. http://www.autismassistancedogsireland.ie
autismcork.ie are even running a conference oct 11 2020 with a section for parents and families.
@leartius: the charities may “care” but they don’t provide diagnoses. A private diagnosis is 750 for the psychologist, 350 for OT and so on. that’s without any therapy. The charities also don’t provide therapy. There are plenty of “supports” available to hand parents reams of materials on what they could be doing to help their child but more often than not (who could’ve guessed) you’d need a degree in the relevant discipline to implement the programs effectively assuming there is a parent not working and available to provide the support.
@Lorraine Mac Rory: fair play Lorraine great answer.
I couldn’t reply as I genuinely didn’t have the vocabulary or tolerance for it. There is such a lack of empathy and understanding these days. People don’t seem capable to understand something unless they are in it themselves.
@leartius: the charities don’t lobby . That’s why. Parents need action advocacy more than sympathetic tones.
@Lorraine Mac Rory: absolutely! And giving a parents a 2 hour course to go forth and implement themselves when they have other kids to look after just doesn’t work on real life
I used to work in an OTs office as an administrator years ago. I’d see the kids coming in for the private assessments/therapy and I’d be typing up the reports. I learned a fair amount in that job that really helped me when my son starting showing different behaviours aged 3. The paediatrician my son and I were sent to, spent 5 minutes with him and said that’s just his age and he’d grow out of it!!
I think it was 2016 when he got his assessment and then it wasn’t until late 2019 he started getting OT. Back in 2016 he was diagnosed with behavioral/emotional issues, sensory, dexterity and fine and gross motor skills issues. In December last year, the OT did another assessment with him and he was then diagnosed with Dyspraxia. He only just started getting help in school before lockdown.
Seems nothing has changed in the 13 years since we asked for an assessment. My son was four and a half when the law that entitled him to an assessment was passed. We had to do it privately since his school needed to apply for resources. Eventually he got his HSE assessment, and then the real nightmare began. We were reffered to 3 different services, and year was wasted waiting. We spent 3 years bringing him privately to SLT and OT, while campaining with other parents. Eventually, the “school age teams” were created – they were brilliant, but the recruitment freeze at the time meant they were seriously understaffed.
99% of health and teaching professionals we met were great, and did their best. The system though is completely disfunctional!
The clowns running this country are an absolute disgrace. I can guarantee there own kids , if needed , are getting the best of treatment.
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