It’s been a while since I’ve had time and inclination to tap away with another “peril”.
Last time I was heading off into the great world of full time work for the first time since Claudia was born.
Thanks to all the ducks being lined up and perfect timing all around it was all smooth running as far as family life was concerned.
My work is nothing to do with the world of disability.
I think the work I do can be enhanced by my experiences with having a differently abled family member and I know it has helped me connect instantly and warmly to interview subjects when we discover there is that shared experience.
But I don’t routinely support people with disabilities in the course of what I do.
But for other people disability is their job.
Not just those initial medical specialists we first encounter but everyone who assesses us and then delivers services to us.
Because these services are often “free” it’s easy to feel beholden to those who are providing the service ; assessments can feel like judgements and delivery can feel like a favor.
It took me years to remind myself that it’s a job for these people ; indeed these people only have their job because of people like Claudia.
People like Claudia provide the need for the job and the context of the job and providing that service to people like Claudia and families like ours is something they are getting paid for.
They can go home and sleep through the night and get annual leave and sick days and all the lovely things associated with having a paid job with set hours and scheduled respite.
Not like the parents of children with special needs. We come home after a days work to a whole different kind of work. Not relaxing.
So it’s really, really annoying when the people who get paid to provide the support – don’t have the knowledge they need to provide that service.
Over the past 24 hours a parent has been posting on a Facebook support page for parents like us – upset at the dismissive attitude she’d encountered when she asked about provision of nappies for her son.
She had been told by her continence nurse that that’s what the (meagre) Child Disability Allowance is for.
Only it’s not.
Children with special needs bring all sorts of extra costs and nappies/pull ups and continence products are a huge one. You’re struggling with the cost and hassle for years longer than other people – hell Claudia is nearly 18 and we’re still having to manage it!
And when your child grows out of the sizes of nappies and pull ups you can get at the supermarket you move into specialist, costly, hard to find products.
Being a “Continence Nurse” is a job. To support parents with strategies to continue to try toilet training and to match the best products to the child and situation. These products are subsidized.
So when a parent has been on the receiving end of having it made “very clear” them they’re not entitled to any support , is told to “go over my head it you’re not happy” given the name of someone else to “take it up with” – I find myself asking – “ Isn’t that YOUR job?”
Because along with everything else disability brings, toileting another whole human being takes a freaking long time. It’s the most unglamorous you can be; kneeling on a bathroom floor, taking shoes and trousers on and off.
Once you add public lavatories (shudder) or single cubicles it’s another whole level of parenting. It’s hard and time consuming. It’s unpaid.
Parents shouldn’t have to then chase around to check and double check this information. They shouldn’t have to make phone calls to DHB’s and WINZ to try to clarify the requirements. All for 4 extra nappies a day.
Our days are full enough!
There was a swift response on social media from other parents, prompting an impromptu survey, clarification, discussion and revealing that failure of professionals to understand the rules around the entitlements within their own job descriptions is one of the most frustrating things we have to deal with.
The worst thing is the dismissive “take it up with someone else” attitude.
No, you support professional, we’re busy supporting our child, how about, if you think it’s unfair or inconsistent – or you’re unclear – how about YOU take it up with someone else on our behalf. How about providing the support you’re paid to.
So the parent here was right, her child is entitled to 4 more nappies a day.
Great. Only did she really need to go through all that to have this extra stress and time consuming hassle to get this clarified?
Wouldn’t it be nice if the person whose job it is to provide continence advice and support to the family actually did that job.
Knowing the rules would be a good start.
But being prepared to find out and advocate on our behalf would be even better.