After my eldest son’s autism diagnosis, he was placed on a waiting list for various government provided services, including speech therapy. Getting past all the gatekeepers to an actual speech therapist who is there to help my child, was a long drawn-out process that kept us as parents largely in the dark.
We had to go through our local doctor, referred on to the developmental pediatrician, then referred on to someone whose job is was to screen his speech again (though we weren’t told this was what she was doing, we thought she was his actual speech therapist), to finally seeing a speech therapist who was there to help our son.
The actual speech therapist told us we should have never been referred to a third screening; our son’s diagnosis and speech clearly always qualified him for help. At the time I was just so grateful to finally be getting the help he needed, that I didn’t hold onto any anger about being forced to jump through more un-necessary hoops and wait longer because of it, though by all rights I could have complained about the extra bother and wait associated with it.
But now they’re messing with my second-born too, and the anger is back.
My second-born has a speech delay; he doesn’t talk as much or as well as other children his age, and the difference is quite obvious. It’s not an extreme concern for us at this point; we think (hope) he’ll be OK ultimately. But because of the family history and for peace of mind, we thought it best to see someone who could decide whether he is likely to need speech therapy.
So I call Plunket and they agree I should meet with them, then I go to a Plunket nurse with my son and she agrees there’s reason for concern and refers him onto the government speech therapy service for proper assessment and eventual help if need-be. Weeks go by, no letter arrives to confirm the referral has been received (I know the system well enough to know the paperwork involved is copious and we should have got a letter or two by now). Then comes the phone call from another gatekeeper.
The caller identifies that she is from “Group Special Education” (the government body responsible for special education needs for very young children). She tells me she needs to ask some questions about my son’s speech development. I’m thinking this is a bit odd, I’ve already been screened twice (once during a phone call to see if Plunket thought it was worth setting up a meeting to discuss his speech delay, and once at Plunket itself with the nurse who agreed there was reason for concern); I was expecting any extra screening to happen in person with an actual speech therapist.
So the lady on the phone asks me some more questions, which are largely repetition of what I’ve already told everyone before her. But she also asks something which I consider irrelevant and really none of her business: “why don’t I send him to daycare?” I tell her I do take him to playgroups, and what has happened at those playgroups, but she persists, with why don’t I send him to daycare..? I pause thinking what is going on here, why is she asking me this? I don’t send him to daycare because I chose to be a full-time mum to him instead of handing him over regularly to paid strangers, and because the studies I have read say there’s no particular benefit to daycare before the age of three (in fact it can be detrimental). He sees extended family a lot, and plays with other children above and below his age, and is a highly sociable and happy child, so what’s daycare got to do with it? But I don’t voice all this, I just pause and say “he’s just two!”
She doesn’t bother to explain the daycare reference, and I’m left with the clear impression that she’s blaming my parenting decisions for his arguable speech delay. She doesn’t bother to ask if I read to him and sing to him and deliberately use speech therapy tactics with him that I learnt from my first-born’s speech therapist (all of which I do every day).
She pauses for a while, like she’s thinking something through, but I still have no idea why she’s calling because she hasn’t told me what the purpose of the call is in relation to him getting assessed. Why am I going through this all again, and why hadn’t I received a letter confirming the referral?
Finally she tells me that she’s just made the decision that she will refer on his referral. If she’s told me up-front at the start of the (highly confrontational and confusing) phone call, that she was deciding whether to refer on the referral, I would have given her the extra information that wasn’t on the referral form but was discussed in person with the Plunket nurse; like the family history and the lack of independently-formed sentences. So now that she’s finally told me the purpose of the call, I give her what extra information I can think of off the top of my head to make sure she won’t change her precious mind, and she again (seemingly reluctantly) states that she’ll refer it on.
All this, just to access someone who can actually decide whether my son even needs speech therapy. Information is not passed on from one organisation to the next, second-guessing of the decisions of other organisations and in the process slowing down access to assessment and services, all adding quite un-necessary to the parents’ stress and the child’s waiting time.
I understand that they need gatekeepers; that many parents worry about their child’s speech and the government service providers have to figure out who actually needs services and how soon. But the layers of bureaucracy, and the lack of open communication between various agencies and with the parents, is ridiculous and avoidable.
If I’d gone private instead of public, I could have seen a speech therapist straight away; not gone through all these gatekeepers. Such a speech therapist could have just told me “hey, your son is fine, no need to worry, come back if he hasn’t done X by age Y” and we’d all have got on with our lives. Or we’d figure out what might be wrong and how to address it as early as possible to limit the impact on his further development. The reason we go public – besides saving money which of course matters – is because going through the public system from the start makes it a lot easier to access any related services and help further down the line that he may need; once you’re “in the system” things are a lot easier and a heck of a lot cheaper.
I don’t see the point though of running a public service in a way that erects barriers to even getting assessed after a problem is identified. I could understand priotising services after assessment has confirmed if there is an obective problem and how severe it is, but barriers to even seeing a speech therapist to do that assessment when both parents and an organisation like Plunket has twice expressed concern, doesn’t make a lot of sense. Any money saved on therapists by not letting through the more questionable cases, is surely wasted many times over on having all these other publically paid, self-important, arrogant, ignorant gatekeepers.
My husband wants me to lay a complaint about the rudeness and un-necessariness of the call I received, but again I find myself anxious about rocking the boat; just been pathetically grateful that we’re on a waiting list and will get to see a specialist to determine what – if anything – is going on with my son.
I had a meeting with my eldest’s head teacher today to discuss his own IEP, and my concern’s about my youngest’s speech came up in passing. Her response was to congratulate me for being so aware, for picking up on the potential issue so early, and for doing something about it. This should be the attitude from those who are supposedly there to help you, rather than the barriers and belittling that seems to come part-and-parcel with the government’s current approach to children with (potential or confirmed) special needs, and their parents. I went through all this rubbish with my first-born, even when the problems were far more obvious and severe, I’d hoped access to services and had improved in the intervening years. But change requires more than hope, so maybe my husband is right; a little boat-rocking is in order.