Monaghan disability supports in ‘limbo’

There is mounting anger and deepening disbelief in Monaghan after it emerged that - despite years of promises, capital approvals and repeated assurances - there is still no confirmed site and no timeline for when a new adult day services centre will be delivered for the county.

In Seanad Éireann last week, families finally heard what many had long feared.

Minister of State at the Department of Children, Disability and Equality with responsibility for the Disability portfolio, Emer Higgins, shared the unwelcome update when pressed for an answer by Aontú’s Sarah O’Reilly.

“There is no timeline because it is ongoing,” stated Minister Higgins, adding that no site has yet been identified. Funding is “earmarked” but the HSE is still “liaising”, she elaborated.

For parents on the ground, the reality feels far more urgent.

Crisis

Like Olivia Larkin, the crisis is already at her front door.

Olivia is a member of Special Needs Active Parents (SNAP) Monaghan, a group that has always campaigned on three core priorities.

“First, the special school. We did secure a temporary special school, which was a huge achievement, but what we need now is a permanent special school on a different site with significantly more places available for students.

“Second, we’ve been campaigning for improved respite services for both children and adults with special needs.

“And third, we’ve been pushing for the new Day Activation Service in Monaghan town for 18 year olds who are ageing out of secondary school.”

Now, Olivia says, a new set-back has overtaken even those priorities.

“There simply are no available places in secondary schools for children coming out of sixth class who have eligibility for special classes.”

Uncertainty

Asked if everything has “folded in on itself”, Olivia replies: “Exactly. We had been working on the premise that those secondary school places would be available. That wasn’t even on our radar as an issue. Our focus was on the day activation unit, respite services and the permanent special school.

“But now it’s February, and these children are meant to be transitioning to secondary school in March. There is no building. No classroom. No accommodation for them.

“If I were to bring my child into St Macartan’s, where would I show him as his classroom? There isn’t one.”

Her son Eoin, age 13, is autistic and relies heavily on careful preparation and routine.

“He needs time to become familiar with environments, with people, with routines. It’s ironic - these are the very children who need structure, visuals, preparation and planning, yet there is absolutely nothing in place for them.

“We’re left in limbo. There’s no timeline, no clear communication, no idea what’s happening next. And we’re expected to tell our children where they’re going to school - but we don’t know.”

The crisis in school places comes on top of an already precarious situation for respite and adult day services in the county.

‘Technicality’

At the heart of that issue, says Kathleen Maguire, another member of SNAP, is a “technicality”.

Kathleen, mother of 12-year-old Ciarán, previously fought - and won - one battle over access to respite after her son was initially deemed ineligible because he did not meet the threshold of a moderate to severe intellectual disability. Following intervention and meetings involving elected reps, then Minister of State Anne Rabbitte changed the children’s statement of purpose, broadening access when Rainbow Lodge opened.

But the adult statement of purpose was never amended, Kathleen explains - a critical factor that can and will impact many going forward.

This year, five of the 75 children currently receiving respite at Rainbow Lodge will turn 18 and “age out”. Some will qualify for adult respite. Others will not.

Some parents, Kathleen warns, “don’t fully realise this yet”.

“If my son turned 18 tomorrow, he would lose respite entirely,” she says. “Unless the adult statement of purpose is changed, families are going to find themselves back at zero the day their child turns 18.”

Capacity

For adults with additional needs living in Monaghan there are few options. Steadford House offers respite, and the Day Activation Unit (DAU) in Rooskey is a building Paddy McAloon describes as “as old as the hills” and already operating over capacity.

Paddy is the father of 17-year-old Reece and chairs SNAP. Like other parents he sees first hand how the current support system is stretched to its limit.

Reece is in his final year at the Holy Family School in Cootehill and, in a matter of months, will need adult support services. None have yet been identified.

“The only alternative is existing day activation units that are currently supporting people in their 50s and 60s. That’s not suitable for an 18-year-old just finishing school.

“There has been a promise of a dedicated day activation unit. We’re told funding has been earmarked. But nothing moves at the pace it needs to. Everything lags.”

A site at the St Louis grounds was identified. The old St Michael’s Primary School building was viewed too. But both fell through. After that, the old fire station site was considered. Plans were drawn up. Money spent. It too now appears to have stalled.

Most recently, a capital submission for St Davnet’s campus was considered only for it to be deemed unsuitable because it is based within a hospital setting.

Planning

Olivia believes that planning for services appears to be consistently reactive rather than proactive.

“There is a need right now for this September,” she says of the need for additional class space. “It’s not like they didn’t know about it. It often feels like nothing happens until parents are forced to protest, campaign, go to the media and share deeply personal stories about their children before any action is taken.”

Paddy agrees.

Rainbow Lodge - currently run by the Talbot Group - he says was transformative for families.

A permanent children’s respite house is planned, to be run by the HSE. When it opens, the fear is that Rainbow Lodge could close.

Paddy is urging foresight. He wants to see a pivot to repurpose the building as an adult respite service.

Focus

“It wouldn’t require major additional investment,” he suggests. “The staff are experienced carers. The building exists.”

Instead of scrambling later, he’s urging the HSE to plan now.

“We’re not asking for luxury. We’re asking for fairness. We’re looking for a bit of foresight and planning. What we want is dignity for our young people as they move into adulthood.”

Sen O’Reilly meanwhile warned in the Seanad that “families and their loved ones need to plan. Continuity and consistency are crucial,” she said, calling for an audit of waiting lists and urgent clarity from the Department and the HSE.

For Olivia, the frustration that families must repeatedly carry the burden of advocacy is “exhausting”.

“It’s frustrating. And it’s stressful.”

“It feels like we’ve been let down - not just as parents, but as families who trusted the system. The burden keeps falling back on us to campaign, to protest, to demand action.

“I’m not doing this just for my own child. I’m doing it for the families behind us - for the fifth-class and fourth-class children coming up, so their parents don’t have to go through this same uncertainty and distress.”