CHILDREN with additional needs depend on others to exercise their rights. Most often, they depend on their mothers.
We Care began as a conversation between mothers sharing their frustrations with a broken system and their heartbreak at battling against it alone.
The Disability Act 2005 places a statutory obligation on public service providers to support access to services and facilities for people with disabilities. People are entitled to have their health and educational needs assessed and to have individual service statements drawn up, setting out what services they should get.
These rights and entitlements are hard-won by families in Ireland and are yet to be won by many. Thousands of families remain on lengthening waiting lists, enduring endless form-filling and below-standard supports in schools and beyond. Lockdown highlighted their vulnerability.
Elizabeth Kyte, a founding member of We Care, who lives in Glasheen, has two children with additional needs.
“The ASD diagnosis came after an 18-month waiting period, six months after my second child was born with Down Syndrome. That year was traumatic and shocking,” she said.
Elizabeth is reflective and philosophical.
“You never think it will happen to you. There is a level of disbelief.”
But there’s anger there too.
“In our society, mothers and the disabled are seen as a drain on a profit-driven system,” she said.
“It’s like we’ve been dumped in some limbo waiting room because they don’t know what to do with us and they don’t want to be confronted by the differences and the needs. It’s a quiet violence, this unnecessary, preventable slow traumatising of families.
Speaking about the new group, We Care, she said: “We are here to listen to each other’s specific experiences and advocate for change on the basis of these. I’m interested in how we can flip our situation into a collective power and resistance.”
The education system is a constant source of struggle for all involved in the We Care group.
“We have twice now found our son without SNA access in school,” says Elizabeth.
“The first time we appealed and got it overturned but it was so stressful that year, I ended up volunteering in the school to free an SNA to spend a few hours with my son.”
Primary school principals, at their most recent forum in May 2021, shared similar frustrations, arguing that the NCSE requires a complete overhaul.
Their report refers to ‘repeated cuts and reductions in support for children with additional educational needs in the past number of years’. It also references the harsh experiences of children during Covid who ‘received no services (which should have been provided outside of the school in the first instance).’
Some 84.4% of schools present had seen an increase in pupils with additional educational needs (AEN) in the past four years. Only 72.2% of those schools feel that their current SET allocation met the needs of AEN in their schools.
The National Principals’ Forum sees models offered by the NCSE in the names of inclusivity as threatening a ‘further stretch of whatever small resources schools have in place’.
Just like We Care, principals are calling for a simpler, more transparent process.
“There should be an honest, transparent and accessible mechanism for the NCSE’s exact profiling of a school’s AEN each year.
“It should not necessitate an inordinate amount of paperwork, much of which is duplicated as it is already with the NCSE,” the report said.
We Care refers to this as the ‘quiet violence of bureaucracy’. One principal adds: “In the past five years, I have appealed our school’s SET allocation unsuccessfully on four separate occasions. Our AEN school profile has changed entirely in this time. Our two special education teachers have 33 pupils on Student Support Plus plans before we ever engage in group supports.”
This feeling of being over-stretched and unsupported is shared by We Care.
Gill Dunne, who lives in the Lough, another member, reiterates the group’s desire to ‘change the culture of caring by making its access easier for all involved’.
Gill refers to the ‘typical battle’ she has had to face in getting her children assessed and supported.
“There are very basic things missing, like online repositories for our children where diagnosis and condition information is accessible.
“Instead, we are overloaded with paper forms asking you to detail your worst day over and over again. We need signposting.
“This is about community support, not charity, getting existing communities to include our kids because that is the right thing to do.”
The group wants to make caring visible, blogging everyday images of their lives. They plan to set up an online support forum also.
Their focus on community and visibility is significant.
Another mum recalls how her daughter was “excluded in primary, called weird and laughed at. It resulted in her self-harming.
“Her recovery over lockdown showed us how safe her home environment is, and she flourished, but she shouldn’t need to stay home to feel safe,” she said.
Ali Robertson, who lived in Cork, but has relocated to Wicklow, is a parent to a young son recently diagnosed with epilepsy.
As a child and adolescent therapist, she is frustrated by the lack of supports offered to parents.
“Despite repeated lip service to trauma informed practice, TUSLA the HSE and the Department of Education have no concept of what this is in grounded practice. Parent trauma is compounded daily by the lack of supports, by having to fill out 30-page forms to access the basic supports these children need.”
Elizabeth Kyte agrees, “Nearly every mother I meet has been traumatised by getting a diagnosis for their child and/or the way it has been given.
“There is zero compassion in the system. Parenting a child with ASD is the same level of PTSD as a frontline troop, according to research.”
The group sees their aims as intersecting with the broader shift needed to create a fairer, more sustainable, more compassionate world. They want to see wellbeing prioritised and favour societal models put forward by innovative thinkers.
Elizabeth Kyte mentions Kate Raworth’s Doughnut Economics as an inspiration, the donut representing a circular economy that prizes care over profit or growth.
She describes our system as ‘totally unsustainable for carers in Ireland; it is completely broken down.
“The government just gave up on our kids during the pandemic. Everything went quiet.”
But her tone is optimistic.
She continued: “We can no longer see additional needs and vulnerability as shameful or taboo — maybe Ireland could become a model of compassion and care in this area.”
All women appreciate the hard-working individuals working in such groups as CAHMS and various ASD support groups.
“It’s the wall of bureaucracy, the delays, the form-filling, the temporary diagnoses, and the lack of any carer support that has worn us down over time,” Gill Dunne remarks.
Again, the primary school principal report backs up their experience, it reads: ‘The persistent claims of spending 20% of the Education Budget, or €2bn on Special Education is money-centred, not child-centred.
“Huge amounts of time are spent trying to reduce budgets instead of increasing services.
“More and more onerous paperwork and red tape is added instead of simplifying the system to ensure children get the support they need in a timely and efficient manner.”
We Care champions inclusivity, diversity and care.
Fittingly, their manifesto concludes with an invitation: “We are open to anyone joining us who is a parent/carer giver for children with additional needs, or an ally who shares our vision and aims.”
To get in touch with the group, you can email WeCareIreland2021@gmail.com