‘The broken system needs to be fixed’
CAMPAIGN Meeting on lack of disability services support
A Shercock couple are arranging a public gathering to draw attention to what they see as “several issues” caused by the “lack of Disability Services support” in Cavan and Monaghan. Linda and Ronan Whitmarsh have two children requiring services from the disability sector, however they feel let down by waiting lists and the slow progress toward support.
The Whitmarshes believe they are not alone. “We are having a lot of struggles in getting services for Finn,” Linda told the Celt.
“We are organising a community meeting for parents of children with special needs in the Cavan Monaghan area, or indeed anyone who requires an assessment of needs for their disability. It's about bringing people together to have a meeting and a chat about the lack of services.”
Eight year old Finn has cystic fibrosis (CF). Linda and Ronan campaigned extensively for Finn and CF sufferers across Ireland to lobby government to reverse a decision on the provision of breakthrough drug Orkambi. Since that successful campaign, Finn received a diagnosis of autism and a suspected intellectual disability.
“In 2019 we started to notice a little bit of a change in Finn,” Linda explained. “He has always had a speech delay. He started to have a lot of repetitive behaviours, like turning lights on and off. His eye contact was very poor. At that time, he was in services for Louth, so we tried to get him assessed by the early intervention team. We were refused six or seven times.”
When the public route was cut off, Linda and Ronan got private assessments, with all indications suggesting Finn had developmental issues: “We knew, with his challenges, mainstream school would not suit him. Because he had no formal diagnosis on paper, we went for a private assessment. No autism unit can take him without being assessed,” Linda outlined.
By not following the 'Assessment of Needs' route, the Whitmarshes now find themselves outside a system under pressure: “If you don't go through 'The Assessment of Needs' route, you are not going get a service statement. This means the HSE have no responsibility to help you.”
Though things have progressed, the pace of engagement is painfully slow. Linda and Ronan are now speaking out about their fight to get services for Finn in Cavan: “We want to raise awareness about the problems and the reasons why there are such a lack of services. We also believe, if we come together as a group, our voice will be stronger.”
Linda is acutely aware of the shortcomings of the service: “There are shortages of staff. At the end of April, in Cavan and Monaghan alone, they are going to be three occupational therapists (OT) down out of five. They [the system] are failing the users and the families. These are not numbers, they are kids.”
In the last three years Finn had one hour of Speech and Language Therapy (SALT) and OT combined: “Finn is non-speaking, and therapy is vital to promote his communication skills. For a non verbal child that is ridiculous,” the frustrated mother says.
Linda says the system is at fault: “The OT and SALT working in the disability services are clearly very skilled at their job. I’m sure that they are doing the very best they can under the restrictions we are all experience, but they are in an understaffed and broken system.”
Finn's older brother, who is 10, has been waiting four years for an assessment for dyspraxia. Linda has been undertaking the role of occupational therapist for her two boys: “I'm trying to be their mother, their OT, the speech and language therapist and research about how best to help them in their development.”
Linda says the meeting is an important step in forming public opinion: “We are going to get this group together and try to rally what we can do. What needs to be changed. The broken system needs to be fixed. We can't fix it, but we can make recommendations to make it better.”
The importance of the meeting is to effect change: “We are not having any TD or representatives. It is just parents and anyone requiring services from the disability sector. It is bringing people together and allowing them vent their frustrations, and developing a plan to go forward. We have been here before with the Orkambi campaign. If we bring voices together it will be stronger.”
The meeting takes place on Friday, April 22, in St Patrick's Hall, Shercock.
Minister responds to concerns about waiting times for assessment of needs during a visit to Cavan this week.