‘Constant battle’: Mother of boy (8) with intellectual disability rejected for support

Trish O’Neill’s son Conor was turned down in September but she was not informed of decision

Trish O’Neill, who lives in Donoughmore in Cork, has been trying to get her son, Conor (8), onto the CAMHS team since August 2020.

Trish O’Neill, who lives in Donoughmore in Cork, has been trying to get her son, Conor (8), onto the CAMHS team since August 2020.

 

A mother from Cork has been left scrambling for mental health services for her son, who has an intellectual disability and autism, after the HSE forgot to send out a rejection letter saying he was not accepted to Child and Adolescent Mental Health Services (CAMHS).

Trish O’Neill, who lives in Donoughmore in Cork, has been trying to get her eight-year-old son, Conor, onto the CAMHS team since August 2020.

Ms O’Neill recently discovered that her son had been rejected in September last year, but no one had informed her of this rejection.

She now must begin an appeals process, while her son is urgently awaiting services.

“My little boy is eight, Conor is his name, and he is autistic. He also has an intellectual disability. He’s been diagnosed since he was two and a half. That was done privately.”

Ms O’Neill says from the day Conor was diagnosed, the family have done nothing but fight for “every single service”.

“He’s getting older, stronger, and Covid hasn’t helped as well. He relies heavily on routine.

“Since the age of five, he’s had no school twice, he’s been in two different schools, and he will be moving school again in September.”

Conor was also in and out of school due to Covid lockdowns. “He’s been thrown from pillar to post,” says Ms O’Neill.

“Because Conor doesn’t have the same ability to communicate verbally, he can’t express his frustrations, anxieties and fears. So, he tends to communicate using behaviour.

“It can get to a meltdown phase, but before that, he does become physically aggressive. He’s hurt me, his dad, himself, and his two younger siblings.

“We are trying to protect him first and foremost, as well as the rest of the family.”

Conor had been seeing a psychologist through Cork’s North Lee ASD service, ran by the Cope Foundation, for the past year. “The psychologist has tried everything . . . Conor needed more help. I contacted my GP who referred Conor to CAMHS.”

The referral was sent in August 2020.

Non-existent catchment area

“We heard no more. I knew there were waiting lists, so I left it for a while. In the past few months, Conor’s behaviour escalated. I had to find out what was going on.”

Ms O’Neill went back and forth with HSE staff, trying to find out the status of Conor’s referral. “I eventually got speaking to the right person. They said that his referral was received, it was reviewed last September, and it was rejected.

“Nobody sent any letter to notify us, and they said they were sorry about that. My GP wasn’t told either.”

When CAMHS rejected Conor initially, he was still under the care of the North Lee team. “They rejected him on the basis that the North Lee should be looking after him.”

However, the North Lee catchment area no longer exists, as disability services for children are being reconfigured under the Progressing Disability Services programme.

“He’s not under North Lee anymore. They also asked for an updated psychology and cognitive assessment. That actually happened in November, had they contacted us they would have known,” adds Ms O’Neill.

“They are way behind on the information they have on Conor. I have to go running around collecting all these reports. It’s so stressful.”

Another issue facing Conor, according to Ms O’Neill, is that the HSE said he cannot fall under the care of the CAMHS Intellectual Disability team, as he attends a mainstream school.

“The only reason he attends a mainstream school is because there is no place for him in the special school.

“We’ve waited three years and he will be starting in a special school in September, but the CAMHS ID team won’t see him now.”

Unfit system

Ms O’Neill says it feels like a “constant battle” fighting for services her son is entitled to.

She added that there seemed to people in the HSE who genuinely wanted to help, but the system itself is not fit for purpose.

Ms O’Neill also feels that Conor is being disadvantaged because he has a disability and autism. “He might have been seen by now otherwise.”

In response, the HSE’s Cork Kerry Community Healthcare organisation said:

“Progressing Disability Services (PDS) are being implemented in Cork at this time, the aim of PDS is the delivery of an equitable and consistent service for children with complex needs and disability in line with the principles and values of the National Programme for Progressing Disability Services for Children and Young People.

“Children with complex needs that have been attached to a previous service like North Lee will transition to the Children’s Disability Network Team based on their home address.

“Cope Foundation are currently in communication with all families regarding the transition to the new teams.”

The HSE also added that the National Access Policy has been launched in Cork along with the Joint Working Protocol between Disability Services, CAMHS and Primary Care. “The joint protocol will provide a process for managing cases (such as you have outlined) that require support across the health service.

“If the family in the case you outline feel that they didn’t receive adequate communication, then we apologise and we can follow up directly if they wish.”