‘Families in Cavan and Monaghan have waited long enough’

“I am here because I believe every child with a disability deserves to have their needs assessed, understood and supported.”

Those were the words of Serena Dawson, a mother of three children with disabilities, at a protest calling for increased disability services in Cavan last Saturday, July 11.

Serena organised the protest with Rachel Kearns, who has two children with disabilities, to call for better access to services for the “hundreds of children, adults and families across Cavan and Monaghan who are being let down by our disability services”.

This was the seventh protest they have organised since last August.

They were joined on the day by Kevin Bravander, who has cerebral palsy and called for improved services for adults with disabilities.

On a sunny Saturday morning, many parents attended the protest, outside Cavan Courthouse, joined by a strong contingent of local politicians. Some participants later marched up the main street of Cavan town, while demanding better access to disability services, before returning to the courthouse.

The courthouse gates were decorated with children’s schoolbags and signs that read, ‘Their voices matter, their lives matter’ and ‘Therapy delayed is childhood denied’ among others highlighting the different ways in which the issue impacts people's lives.

Serena and Rachel wore t-shirts with pictures of their children beside the words, ‘We deserve a chance, not a waiting list.’ Both families have been on waiting lists for disability services for several years.

“Families are exhausted,” Rachel said.

“We spend years fighting for assessments, therapies and supports only to face another battle when our children turn 18. Disabilities don’t disappear at 18, but all too often the supports do.

“Then as our children get older, many of us fear we’ll be joining the ‘Before We Die’ campaign, hoping that there will be suitable housing and support when we are no longer here.

“This fight is just never ending,” she continued, adding that they’re “tired of fighting a system that should be supporting them.

“These are not just names on a waiting list,” Serena added.

“They are children growing, developing and missing vital supports and opportunities.”

Acknowledging the role of parents as “essential”, Serena urged that they “should not have to become a substitute for properly funded disability services”.

“We are asking for a system where early intervention means support, where assessment leads to appropriate intervention and where parents are partners, not replacements.”

Their children are “not asking for special treatment”.

“They’re asking for what every child deserves, to be understood, to be supported, to have their needs recognised and to have the opportunity to reach their full potential.

“Together we can send a clear message to the government that families in Cavan and Monaghan have waited long enough.”

CUT

Speaking to the Celt before the protest, Kevin Bravander, who accesses a personal assistant service to assist him with day to day living for 20 hours per week, highlighted how children accessing disability services will one day need to access adult services. He also said that there should be better access to personal assistant hours for adults with disabilities as his own hours were cut from 35 hours per week down to 20.

“Children with cerebral palsy turn into adults,” he stated.

“We’ve the same lifespan as our able-bodied counterparts. People with disabilities deserve as good a quality of life as is humanly possible.”

Angela Campbell from Belturbet attended the protest for her two sons, an eight year old and a five year old, who are both on the spectrum and have been on a waiting list to receive speech and language therapy and occupational therapy.

“If you don’t have protests like this, it can go under the radar - [people think] that there isn’t a problem,” Angela told this newspaper.

She believes more funding is needed to hire more professionals to provide specialist therapies as the staff in the services are “doing a great job” but “can only do so much”.

She also feels there needs to be more ASD units in local schools to allow children to go to school in their own community. Her two boys go to two different primary schools as there wasn’t a place for her younger child to attend their local school. While she is “delighted” that he got a place, he is now in a gaelscoil despite being exempt from Irish, so it is “just not the right place for him”.

“It’s terrible that my own child, because he has been diagnosed with autism, can’t get a place in his local school,” Angela said.

“Children should be able to go to their local school and not be discriminated against because they have some sort of a disability and the services aren’t there.

“I’m grateful because there are some children who don’t have school placements, and that’s absolutely terrible, but my child is sitting in a school that’s not catering for his specific needs.”

Next year, her youngest son will make his First Holy Communion and it “breaks [her] heart” that he won’t be able to celebrate it in his own community. She also hopes that he would be able to make lifelong friends in the community but he’s not able to do that while in a different school.

GOALS

Rebecca King from Cavan town attended the protest for her youngest daughter Willow, who has disabilities and is pre-verbal. She has been on a waiting list for services with the Children’s Disability Network Team (CDNT) through Enable Ireland since she was two and a half years old and will turn six in November.

Rebecca is Willow’s carer, and she also has two other children with disabilities who can access services through HSE Primary Care.

Willow gets “amazing” support in her local school but she is still “not hitting her goals at all” without access to services.

“There needs to be therapies for Cavan, therapies that are consistent,” Rebecca said.

“We’re not asking for a lot, we’re asking for what everybody else gets. That’s all we want.

“They will eventually meet their goals, they just need that extra bit of help and that can’t be all on the parents because it’s a lot.”

SADLY LACKING

Frances O’Neill from Redhills attended the protest over concerns surrounding what she says is a lack of supported living for adults with disabilities in Cavan. She has a 30-year-old son called Matthew with disabilities and full care needs, who resides in a supported living home in Monaghan.

While they’re grateful for the place her son has, where he is well looked after and which they were “lucky” to get, she says that “he needs to see [her] more than he does”.

The move to Monaghan for Matthew, she remembers, was “traumatic” for him and had to be done over a six month period.

“They’re being pulled away from their family, pulled away from everything they know,” Frances explained.

“He’s the most beautiful young man,” Frances said of her son.

“He loves music, he loves animals, he’s so wonderful. I want to have him around me.

“I just feel ashamed of my county that we’re not providing the housing and the care needs that families need.

“I love Cavan, I’m a Cavan person through and through but we really are sadly lacking in our services for people with disabilities and we need to up our game big time.”

Although the protest was “well represented,” Frances feels that many families who are full-time carers for people with disabilities were not able to attend due to their other commitments.

“That’s why our voices are not being heard enough,” Frances said.

“It’s because people are caring and are so tired from what they’re doing, they don’t have time and it’s being misrepresented the fact that the need is out there.”