Letter to our Taoiseach, Cork City Hall June 15th 2022

We call on you as our Taoiseach, our local representative, a citizen of this country and our neighbour, to act on the collapse of children's disability services with the urgency it so desperately requires. This crisis cannot be attributed to the actions of one person but ultimately one person must step up and take responsibility for it. We do not need any more excuses or promises, we need action.


We are watching our children's lives and futures used as a political football in the media. We watch as ministers ask for access to the services they are supposed to have control of and see how little power they have when they are stone walled with fake data or just denied access altogether. Meanwhile our children lose a little bit more everyday, a little bit more mobility, a few more skills and a hell of a lot more dignity. Because there is no two ways about it, it's degrading having to make our personal struggles public like this again and again. Our children deserve dignity and privacy.


M is an adorable 20 month old girl living in Cork. She spent the first year of her life in hospital battling a rare neurological condition and has complex needs. Her family were overjoyed to get her home but the support for her medical needs promised by the HSE have never fully been fulfilled. Her family await vital equipment such as a buggy, stander and sleeping aids. She has had no SLT and just 4 physio sessions since Oct 2021. Her family were told there is no respite in Cork for children her age.


Not far from M's home lives P, a 5 year old girl living with a rare life limiting condition, who also has very complex needs. Her family went on The Late Late Show 6 months ago to highlight the fact that they have been waiting on a suitable bath seat for their daughter who is unable to sit unaided for 2.5 years. It's now been 3 years and Ps mother recently stood at the FUSS rally in Cork in the pouring rain at 6 months pregnant speaking of the absolute agony of having to continuously plead for the most basic things her child needs to just exist and still getting nothing. Her family have been robbed of the chance to watch her start primary school in September because her assessment was not done in time. Her family does not have time.


Families are consistently told they must be realistic and that this will not be fixed overnight. They must hold on just a little bit longer because everyone is trying their best. How long should they wait? 2 year old E has been waiting 6 month's for a bath support since her family stopped being able to get by with the newborn bath support they were using to wash her. Should she just adjust her expectations too?


O is 10 and is still waiting on the Psychology assessment his family were told would be completed before he started primary school. He was last seen at 2 years and 8 months old.

D is 11 and isn't receiving his allocated home support hours. He last saw a therapist 3 years ago. His brother A is 9 and has never had a single therapy session since his diagnosis 5 years ago.


O is 2 years old and has complex needs and desperately needs SLT and physio. He is due to have open heart surgery this summer. Due to his low tone and lack of therapeutic input, there is a strong likelihood he will also need a feeding tube. Physio and SLT could make a huge impact on his recovery time if only he could access it.


E has been waiting on leg braces for 9 months so far, nobody seems to know how long it will be.


J is autistic and has an intellectual disability. His family have had no support since therapists were removed from special schools in 2019. They are dealing with escalating aggression in a child who is growing stronger by the day with nowhere to turn for support. CAMHS have rejected referrals stating they have no psychologist who can deal with children with intellectual disabilities.


B is 1 year old with quadriplegic cerebral palsy and has been waiting 6 months now for OT and a DMO suit.


A is 8 and has been waiting for 3 years now for OT and SLT.


S is 7 and has been waiting for OT and SLT for over 4 years now.


M is 7 years old and has absolutely no services or support. The Gardaí recently brought him home to his mother after he eloped in the middle of the night. His mother urgently needs respite and M needs OT ,SLT and psychology input.


E is 15 and needs an ASD assessment, SLT and psychology input.


S has been waiting 2 years for a wheelchair and currently sitting in one, which even to an untrained eye, is blatantly too small for her. She had her seating assessment done June 1st 2021 and has no date for the delivery of a suitable, safe chair.


A is 2 and has been told she will not get an Autism assessment before primary school. her mother fears she will not access an appropriate school place without it.


A is 12 and still waiting on OT, SLT and psychology.


R is 12 and was approved for assistive technology but never received training on how to use it.


K is 15 and has Cerebral Palsy. Her hip has been dislocated for 13 years. Orthopedics refuse to intervene and she is expected to live with intense pain. She gets very little services or support.


Brothers D and T need OT, SLT and psychology along with social support. Psychiatric intervention is also required for anxiety. Currently, General Anaesthetic is required for things such as dentist visits. The dental surgery has moved slots for children with additional needs to the afternoons which only adds to the anxiety and stress. They are in 1st and 2nd class but their parents are already sick with worry over secondary school due to the battle they faced to get a primary school place.


E is 3 years old and has been on an urgent list for psychology input for 18 months. Her family were told to try watching "Nanny 911" when they asked for advice on self injury. She will not be going to preschool in September as she has no place caused by a delay in her assessment.


K is a little girl left waiting for funding to be released for a wheelchair and new AFOs. Her family have been told to try writing complaints but they already have.


M and C both attend special schools. M is awaiting respite and C is waitlisted for support but is receiving nothing.


L is 15 with complex needs and has had no services since age 6. He attends a special school and needs OT and SLT. His mother is parenting alone 24/7 and burnt out. She desperately needs respite support.


O is 6 and has Global Delay and Cerebral Palsy. She needs services. Her family were denied a primary medical cert as it was decided she "wasn't disabled enough" yet her family require modifications to their car.


M is 9 years old and has a rare syndrome. You could count on one hand the amount of OT, SLT and physio he has had since starting school. He is 3 years awaiting Urology.


R is 4 years old and has a rare chromosome duplication. She needs OT, SLT, physio, psychology and follow on genetics appointments. She was referred at 18 months for AON and yet has received absolutely nothing.


B is 17 and has received no services since he began secondary school.


D, age 12 is autistic. His files were lost during the reconfiguration of PDS and now, no one can seem to locate his place on any waiting lists.


C is 12 and was turned down for disability services as a baby as it was deemed his needs were medical. He is still awaiting autism assessment and is struggling massively in school. School cannot adequately support C without reports outlining his needs, They again are left struggling.


K is 3 and awaiting assessment. His family have begged for support due to serious escalating incidents of self injury.


A is 14 and has complex needs but gets absolutely no services despite years of lobbying CAMHS, Limetree and TULSA.


What do these children have in common? 1) They do not have time and 2) Every last one of them lives in your constituency.


These are just a fraction of the children across Cork who are disappearing a little bit more everyday, whose families you may no longer see in the local park, no longer see at the GAA. These children are locked out of our communities. Our families are locked out. They have already suffered immeasurable loss as a result of state sanctioned neglect. But we will not allow it to continue.


We demand urgent action. This issue is not covid related nor a result of cyber hacking. This is the result of a government who have lost control. We have the legislative, the executive and the judiciary. And then our 4th branch of government which exists above them all, the HSE. We refuse to allow this government to rob our children of any more time. We cannot wait.


These services are hemorrhaging staff. They say they're recruiting but what are they doing to ensure the staff they have already actually want to stay? The CDNTs are down 100 staff members since September 2021. Why do you think that is? Why is the private sector booming? One team in Cork is on its 5th manager in 12 months. How does that best serve children and their families?


Staff are being treated poorly. They are reprimanded for speaking out or raising concerns. They are given conflicting information by the Minister and by the HSE. There is an absolutely toxic work environment with no accountability whatsoever. The burn out rate is high and job satisfaction is at rock bottom. Why on earth would anyone stay when they can work in private practice where they can provide therapies like they trained to do?


The HSE recently claimed that AON waiting lists were down 72% in a national newspaper and there were less than 3,000 children waiting. Are we going to just let the 10,000 children who received the unlawful screening appointment rot? This appears to be the plan if we judge based on the letter sent by the HSE to these 10,000 families stating someone would be in touch if they felt their child needed an assessment. Those children are all legally entitled to have the nature and extent of their disability determined under the Disability Act 2005. These letters seek to confuse parents about their rights in the hopes they won't sue for what their children are entitled to. They publicly claim they have reduced waiting lists while all around them children and families are suffering from their neglect. It is an insult. We need to begin outsourcing these assessments to clear the REAL waiting lists, not the fabricated ones.


We need therapists returned to special schools. This was the only place many children got any intervention whatsoever. These children need support. Their teachers and SNAs need support. They do not have the expertise required to be everything to these children no more than parents do. Anne Rabbitte claimed it would be 2 months and that timeline has passed. How many will be returned and when?


We must ratify the UNCRPD Optional Protocol as a matter of urgency. Our children's rights and the rights of all people with disabilities in this country are being trampled on. This community has suffered such neglect but will not take it any longer.

We must open up access to personal budgets for equipment and respite to stop the money allocated to families disappearing into the ether due to a lack of appropriate staff. No child should be left waiting for the basic equipment needed to simply exist. There can be no excuse for such negligence.


Parent Forums were outlined as a key part of the roll out of Progressing Disabilities. A programme that on paper sounds wonderful but in reality is an absolute unicorn, a fantasy that bares no resemblance to what families experience. Families have a unique viewpoint as the only ones navigating the system from start to finish. They are best placed to advise on where the cracks are before they become cavernous holes which take decades to repair. If PDS is going to work then parent engagement needs to be prioritised and listened to. Families are desperate to engage on this issue. We want to find a way forward together for our children and families.




We are standing here today as your constituents. There are tens of thousands more families like ours all over this country and you are failing them a little more every day. Personal responsibility must be taken at some point and this is that point. We demand you take control of this crisis and act with the urgency our children deserve.

Signed

F.U.S.S

Families Unite for Services and Support

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