Luke left waiting four years for vital therapy
Parents forced to pay privately while they f ight to access critical services
NINE-YEAR-OLD Luke Bennett, who has autism, has been on waiting lists seeking crucial services for nearly half his life.
Now, the Health Service Executive won’t even tell his family what number he is on the list, claiming GDPR confidentiality.
Luke’s four-year wait is longer than most, but sadly the northside Dublin boy is far from unique. One in 65 children in Irish schools has autism, but how they are cared for differs dramatically – even before a child is diagnosed.
Children with disabilities whose parents cannot afford private treatment are losing out as their better-off peers sidestep spiralling waiting lists, it emerged at a recent meeting for parents of children with autism in the north Dublin region, organised by Senator Aodhán Ó
Ríordáin. The public meeting, held in Raheny and attended by over 80 frustrated parents and family members, was held to highlight the everyday challenges facing these children.
Adam Harris, founder of Autism group As I Am and a brother of the Minister for Health Simon Harris, was one of the speakers. He described the families’ situation as ‘a systems failure’.
In the last 18 months, long delays have pushed some parents to the costly option of taking High Court action.
Occupational therapy is vital for autistic children to learn how to manage sensory overload from noises, lights or touch.
For Luke, his parents Stephen and Nicola Bennett are forced to rely on a local charity to subsidise private therapy. Luke has been on a waiting list for therapy since August 2015, and despite frequent phone calls, emails and even a formal complaint to HSE management, he has not been seen.
He was diagnosed by the HSE with autism in March 2015 and put on a list for Beechpark Services in Tallaght that summer.
Dad Stephen said: ‘There’s my son waiting over four years just to be seen, it’s not fair, it’s not equal.
It’s just full-on, you are fighting to get this and that, and fighting Beechpark to get a place.’
In spite of receiving help from charity Snowflakes, Stephen estimates they have spent up to
€5,000 so far on private OT alone.
The family complained using the HSE’s Your Service Your Say.
On November 24, 2017, a complaints officer responded to say Luke was still on the same waiting list, and his last meeting with any professional was before April 2016. In the letter, seen by the
Irish Mail on Sunday, she said their case was going on a risk register and was escalated to the attention of the Head of Social Care in Dublin.
At that time, Luke was attending an autism unit in a local primary school, but the officer wrote: ‘Mr Bennett is correct in his view that Luke would have been seen by another service more quickly had Luke been attending mainstream school.’
Stephen said: ‘I don’t think it’s fair that if a child needed speech therapy in a mainstream school, she would be seen by the HSE in a couple of months and sorted. It seems like we have drawn a short straw.’
In the summer of 2017, the
Bennetts asked local TD Finian McGrath, Junior Minister for Disabilities, for help. The HSE response, dated August 2017 and seen by the MoS, states they are recruiting staff for Beechpark.
Adding to their fears, Luke does not have a school place for this year, as he is now too old for his autism unit. The Bennetts have been unable to find another school for Luke, and rely on a home tutor.
His parents say Luke has improved greatly thanks to the private occupational therapist, his junior school and working with his mother. Visibly emotional, Nicola said: ‘It’s a tough one. If it wasn’t for ourselves, God knows where he would be; going to that OT made a huge difference.
‘He’s missing out on socialising with children, they’re his friends and now he doesn’t have that. He’s definitely missing out. It’s like we are falling through a crack...’
Odhrán Allen of the Association of Occupational Therapists of Ireland warned about two-year waiting lists, and in some regions longer than three including assessment.
Many parents at the meeting said they rely on health insurance and subsidised treatment from charities to fill the gaps. Leonie Curran, chair of a Dublin Autism support group Snowflakes which provides reduced-cost treatment, said: ‘We have kids in our service who have come under the HSE’s School-Age team, they would have gone on when they were five and they’re now eight and still haven’t had any services.’
Answering questions on this issue at the Health Committee last month, Minister Harris said 100 new therapist posts have been created, but he admitted that more are needed.
One mother who was helped by Snowflakes told the MoS that paying for private treatment is the only option for her son.
Fionnuala Gilmartin’s 10-year-old son Evan has Asperger’s syndrome. In the last year, he received three Speech and Language sessions from the HSE, and she said they can go up to 12 months without contact from the public team.
‘We spent €2,000 in six months last year. There is a waiting list now for private care too. It’s not as long but you could be waiting up to three months for a private therapist,’ she said.
John O’Donovan, head of social care for HSE Dublin South said they currently have ‘just over 30’ staff instead of the required 45. He said this shortage has an impact on waiting times. He added: ‘The waiting time for children newly assessed as suitable for Beechpark Services is dependant on the nature of support required and is contingent on the movement of the overall active caseload for the collective which is Beechpark Services.’
‘Occupational therapy is vital for autistic children’ ‘100 new therapist posts have been created’