Thursday 18 October 2018

'The system is broken' - mum told by HSE to 'call gardaí' when her son with autism gets frustrated

  • Jane Johnstone lost her husband suddenly three years ago after he suffered a cardiac arrest
  • Her eldest son Evan (17) has severe autism and is non-verbal
  • Her younger boy Daniel (13) also has severe autism
  • Evan cannot control his moods and when he is angry she fears for the family's safety
  • When she asked for extra respite, the HSE has suggested foster care, calling the gardai and have said they will refer her to Tusla without her consent
Evan with Jane and Ciara
Evan with Jane and Ciara
Kathy Armstrong

Kathy Armstrong

A devoted mum who was told by the HSE to call the gardai if her son - who has severe autism - gets frustrated has said that "the system is broken."

Jane Johnstone has said that she is desperate to keep her family together but that getting any kind of State support is a "battle."

Jane lives in Kilmore Quay in Co Wexford with her sons Evan and Daniel, who both have severe autism; her daughter Ciara (19) is studying in Dublin and Jane's husband Rod passed away suddenly three years ago.

She told Independent.ie: "Evan (17) is non-verbal and he is stimulated by his environment and gets very claustrophobic and frustrated if he is out of his routine and confined to the house for a long period of time, it's difficult for him to cope with.

"When he is overwhelmed we do see challenging behaviour and his safety and the safety of other family members is at risk.

"My husband Rod died very suddenly three years ago, he had a massive cardiac arrest and collapsed on the kitchen floor.

Jane with her late husband Rod and their children (L-R) Evan, Daniel and Ciara
Jane with her late husband Rod and their children (L-R) Evan, Daniel and Ciara

"It is quite a difficult situation, I have struggled to keep my family together and we very much depend on the small amount of support that we get.

"Obtaining that support has been very difficult, I have had to go to some extreme lengths, I've even had to protest outside of our local HSE office, so there has been very little time to grieve.

"All my energy goes on holding my family together, my only focus is that I can't lose anybody else, I want to keep my boys at home but we are dependent on respite services to keep everything ticking along and even at that it's challenging, but those boys have my heart and soul."

She said that after Evan was diagnosed with a degenerative eye condition, that has left him with just 40 per cent vision, she asked the HSE for extra help.

She explained: "I asked for help to bring him to hospital appointments - obviously I also have another autistic child who would need to be cared for.

"One of the main options given to me was home-from-home care, so a foster care system, I had only asked for a few hours and to help with emergency situations so I felt it was inappropriate.

"The next incident happened in August - which is a very difficult month for us, both of my sons go to a special school in Enniscorthy and that's closed in August and with everyone looking for respite service resources are very thin on the ground.

"I was concerned and spoke to the HSE well in advance, I was given eight hours support for Evan per week, it's not an awful lot but I'm grateful and it managed to keep our heads over water.

Ciara and Evan
Ciara and Evan

"The last week in the month there was a communication issue between the HSE and the service provider and basically we were left to deal with it, we had five days where there was no respite at all.

"I was concerned about how this could affect Evan's behaviour and how I would cope with keeping himself and everyone else safe.

"It's important to stress that Evan has no control over his behaviour but providing this service would preempt behavioural issues but the HSE said there was nothing they could do and they suggested if he became overwhelmed and there was a problem with his behaviour I should call the gardai."

Read More: Mother wins fight for respite care for autistic children

She said that she was stunned by the suggestion and said that it would only make things worse if Evan was stressed.

Jane said: "I was deeply offended by that  - Evan hasn't broken any laws, he is a vulnerable young man and I don't think he would even understand what a guard is.

"To bring guards in here would only escalate the situation and in fairness to thee gardai they're not trained to deal with an autistic 17 year-old.

"I was told at that point they could refer me to Tusla without my consent, I've never had anything to do with Tusla but my understanding of Tusla is that parents are referred to Tusla is if they are neglectful or abusive, which I can say hand on heart that I'm not."

She has complained to the HSE and wants an apology but was told that this is their policy.

She is also worried that when Evan turns 18 next year he could lose some of the servies he has.

She said: "My biggest concern is that everything I have fought for is going to come to an end on May 1 when Evan turns 18, he'll lose his child respite services but we don't know yet what adults services are available.

Daniel with Rod, weeks before he died
Daniel with Rod, weeks before he died

"It's challenging but we manage it, if you take away the services that hold us together I would be very concerned."

She said that people with autism and their families are treated badly by the State and more resources need to be made available to support them.

Jane said: "It's not just my family, this is a problem for families across Ireland, it's the basic stuff that allows our children to develop, everything is a battle and no is always the first answer so you have to fight for them.

"Families like mine are very isolated, we have to spend a lot of time locked in the house because the two boys need constant supervision so it's just not safe to bring them out by myself.

"I feel segregated, if Evan could speak I know what he wants is the same as any 17-year-old boy, he just wants to be part of the community and to find his place in the world but the system doesn't allow it.

"As a society we are better than this, this is not in the people's name and I think people want us to be part of the bigger picture but it's the system that's broken.

"We have such a huge health budget but it's just not reaching the people, I don't get excited when I hear there is going o be extra funding for respite because I know it won't make a difference to us."

Read More: Mental health in the spotlight at meeting

A spokesman for the HSE said that they are working with people with autism and their loved ones.

He told Independent.ie: "The HSE wants to assure the public that its community services are there to care and support those who require our services.

"The HSE acknowledges the difficulties faced by some families and will continue to liaise with them to resolve issues that arise. In this instance, HSE staff are in contact with the family directly in order to support them on an on-going basis.

"The welfare of patients, clients, service users and their families in Co. Wexford is important to the HSE. Our community services are working to ensure that, within our existing resources, people have access to our services. 

"The HSE encourages any individuals and/or their families, who may have an issue with the service they are receiving, to make contact with the services concerned and the matter will be discussed directly with them."

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