‘Luke has to wait a year for HSE assessment’ for acute autism

Luke Aherne prefers light switches to toys and “does something with his eyes” that the two-year-old’s mother Melanie says is a giveaway to his condition.

She recognised early on that there was something awry — he wasn’t talking — and a public health nurse referred them to the Early Intervention (EI) Forum to review Luke’s case and to refer him on to the most appropriate service.

“We sent off the referral form in May and we thought we’d be seen in June, but it took until September. The forum referred us on to the Brothers of Charity,” Melanie says.

All referrals for early intervention are reviewed by the Early Intervention Forum, comprised of representatives of the local Early Intervention teams such as COPE, Enable Ireland, North Lee Autism Spectrum Disorder and the HSE.

They were told by the charity that they faced a 10-month wait. “But when I spoke to them over the phone they told me it would be closer to a year. By then Luke would be 3-and-a-half. Given early intervention is essential for children like Luke, we knew we had to go the private route,” Melanie says.

They travelled to Dungarvan, Co Waterford, for a private assessment which cost €500. The diagnosis of acute autism meant they could apply for the Domiciliary Care Allowance, worth just over €300 a month.

This takes care of twice- monthly speech and language therapy and twice-monthly occupational therapy for Luke, which they can’t access in the public system without an assessment of need.

The Ahernes have the additional problem of finding a suitable playschool for their son.

Not all playschools accept a private diagnosis, Melanie says; some insist on the multidisciplinary team (MDT) assessment carried out by the HSE.

“If we can’t get him in anywhere locally, we will have to put him in a taxi with a carer and send him off to a playschool further from home come next September,” Melanie says.

The private diagnosis does allow them to apply for home tuition but Melanie believes he will flourish best in a playschool setting where interaction with other children can help hone under- developed social skills.

The Ahernes, from Donnybrook in Cork, are paying privately for speech and language therapy but had applied to get into the public system.

However, having secured an appointment with a HSE therapist, Melanie was told on arrival that she would not be able to access therapy because Luke had not undergone his multidisciplinary team assessment.

“I told her it would be a year before that assessment took place. It means Luke will be three-and-a-half before he gets into their service,” Melanie says.

Melanie says she was advised to make a complaint to the HSE to speed up the assessment of needs process. The 2005 Disability Act provides for a complaints procedure if an assessment is not started or completed within a six month timeframe.

“We’ve been advised that we will be seen sooner if we complain,” she says.

Mum: Parents must complain to get support

Sharon McCarthy has a very good grasp of what’s required to navigate the system when applying for supports given four of her six children are on the autism spectrum.

Her eldest son, now in university, was born prior to June 1, 2002, which excluded him from applying for an assessment of need under the 2005 Disability Act, and Sharon, from Carrigaline, Co Cork, has never received any publicly funded supports for him. However, her other three children were eligible for assessment.

Sharon’s 13-year-old son was diagnosed seven years ago with childhood autism within the six month statutory timeframe set down by the act and was offered services to support his needs, such as social skills training, but he was unable to access speech and language therapy in the public system because, Sharon says, “his need was not as great as others”.

“He was relatively high-functioning so it was assumed he didn’t need a high level of intervention. But just because you can verbalise doesn’t mean you can communicate your emotions,” she says.

Her 10-year-old was diagnosed four years ago with Asperger Syndrome. She waited 10 months for an assessment of need and despite sensory problems, did not access any supports at that time. A private assessment determined that her daughter needed both speech and language therapy and occupational therapy.

Sharon’s last child, aged nine, was diagnosed at almost eight-years-old. As a veteran of the assessment of needs process, Sharon complained when the HSE breached the statutory timeframe of not commencing the assessment process within three months of receiving her completed application.

Her complaint was upheld and her child was immediately referred for assessment and had a diagnosis in six months. There is a view among parents trying to access assessments that the only way to circumvent delays is to complain, she says.

There is also widespread unhappiness at the lack of support when assessments are completed. “Multidisciplinary team support services [eg speech and language therapy, occupational therapy] are very thin on the ground. Any child diagnosed since last November can not access any form of support. They [the HSE] are trying to deal with the backlog of previous years,” she says.

While Sharon is a veteran of the system, she feels sorry for parents “who are watching their child collapse before their eyes” because of an undiagnosed disorder.

“People need to know that an assessment of need is their child’s legal right and that there is a complaints process that can be followed if that assessment is delayed. The problem is the system is so understaffed and under-resourced. In 2009/2010 there were about 200 families in the South Lee Autism Spectrum Disorder service. Now at the end of 2016, that figure is above 700 families, some of whom will be dealing with multiple diagnoses.”