There are days i could just lie down and cry parent of autistic child on funding shortfall

Seamus Enright

“If I had the Minister in front of me, what would I say? I’d tell them to come with me, for a day. I’d walk them side by side through all the work we do, so they could see the good it has for both the children and their families. I’d want the Minister to see what it takes each day to work with these children, getting them fed, get them toileted, onto the bus, and then I’d want them to come back to me and try say ‘we don’t deserve better funding’.
“I’m fed up, I’m at my wits’ end! There are days I could just lie down and cry, thinking about my own son, thinking about all the children here. I love them all as my own, and that’s why we do what we do here. That’s why Cavan Autism Parents Support Group (CAPS) exists, and that’s why it hurts so much this feeling we’re being ignored,” group founder Bernie Nelson told The Anglo-Celt last week.
Her outpouring of words came at the end of the annual CAPS Summer Camp for children with autism at the Holy Family School, where Ms Nelson confessed it remains a “continuous struggle” for the group to raise the necessary funding to survive.
If not for public generosity and the volunteers who assist their activities, Ms Nelson says all the services provided by CAPS for children and young people with autism would most likely “grind to a halt”.
Started with just 10 families in 2011, CAPS has since expanded to include 54 families and 62 children and young adults across the region. The group runs weekly events for children with autism at weekends, and during the summer hosts Summer Camps, the largest of which took place in Cootehill last week.
For Ms Nelson from Crosserlough, whose 17-year-old son lives with autism, she says the three-week camp provides a crucial juncture for children with autism and their families as it intersects with the long summer months without structure or routine.
Last year alone CAPS ran up a bill of €64,000 hosting all its activities, while it’s estimated that the recent Cootehill Summer Camp itself could cost as much as €25,000, all of which has and will be paid for through fundraising locally.
“Everything that CAPS does is through fundraising. There is a massive need for this camp. It should be here. It needs to happen. But all we’re ever told is that there’s ‘no funding available’, or ‘your application doesn’t meet the recommended criteria’. Let me say this. If whoever signs off on those forms came down here to us and spent a day in our shoes, the colour of that pen wouldn’t be long changing.” Ms Nelson would like to apply the same set of circumstances to any would-be Minister willing to see first hand the unseen work that CAPS does, and also the ongoing need for improved teaching facilities at the Holy Family School, an application for which remains with the Department for Education.

‘Outrageous’
“It’s outrageous what’s happening. That staff and these children are still left waiting, in this day and age. What’s needed most is a bulldozer for what’s here right now. Give these children and the staff who work here what they deserve. The conditions they have to put up right now are crazy.”
With regards funding for CAPS, Ms Nelson paid tribute to the families and friends of the organisation who continue to back the group financially, and to the volunteers, up to 30 of whom assisted the recent Summer Camp, who she says are its “lifeblood”.
“For us to be able to provide what we do, there needs to be some sort of support from up top.
We have Enable Ireland, no fault of their’s, referring families to us. We’re delighted to have them, our door is always open, but we don’t get funding. “There is no shortage in demand for our services. There’s no let up, which is scary in one respect because we have to consider where and how we can go back and come up with new fundraising ideas. The HSE, the departments, whichever one it is, they have to wake up and see what’s happening, and do something before it’s too late,” she says.