When 'choice and control' becomes a problem....

It's me. Hi.... I'm the problem it's me.

I am a big one for facing reality. And sharing it.

So if you’re feeling tender today, this post might be best saved for another day…

While all this reform is happening it’s easy to resist change. But I think most of us are clear that the NDIS does need some reforming. And it’s a harsh truth that the NDIS, or individualised support budgets are doing more harm than good for a number of disabled people.

This article won’t apply to everyone (or at least not right now) but it may very likely apply to you at some stage of this parenting journey you’re on, so if you read this thinking ‘not relevant’ and you have no triggers from what I say, then just file it away as some concepts that you may revisit in a years time or in ten years time.

And let’s all consider where we are at in the stages of grief… as you read this post because it may feel uncomfortable to read and if it does, then the invitation is to sit with that and get really super honest with ourselves as to why.

I have learnt in my time on this earth that I’d rather be hurt with the truth than comforted with a lie… And sometimes deep down we know we aren’t being 100% honest with ourselves and that incongruence does more harm to our self worth that we usually realise or admit.

A trip down memory lane…

In the ‘good ole days’ (pre NDIS) most services were block funded. You were told that in your region the Early Intervention Provider was X company / organisation / non profit and within that organisation you were assigned a speech pathologist or an OT or a keyworker and that was who you and your child worked with.

You saw them once a fortnight for about 40 minutes. You generally stayed with that therapist unless there was a significant issue or breach of professionalism. They were the therapist we had and we were just glad to be off the waitlist. #truestory

With the introduction of NDIS how times have changed.

We get to choose who / where / when we work with and that comes with the significant benefits of person centred support but like everything there are pro’s and con’s. I wonder…. do we ever stop to think about the drawbacks of choice and control?

Does it really make much difference?

Lets break it down.

Contrary to being told ‘Susie is your therapist’ and knuckling down with her clinical / specialist recommendations, nowadays with individualised packages, an NDIS participant gets much more choice and power. As humans we are biologically wired to seek the path of least resistance. I prefer the term efficient over lazy but I’ll frequently grab the opportunity to avoid hard stuff. #humanbehaviour101

So while our therapist Susie was our only option back then, a participant in the NDIS can change to a new therapist when things aren’t working well.

If things aren’t working well because the therapist has different values or an inadequate skill set, then the opportunity for a change is beneficial. But what about if mum or dad don’t like the information they’re being provided from Suzie when in fact it may be information that they need to take onboard.

What if we are then going through 3, 4, or 5 therapists in a year?

I recently saw a post in a service link up group where a participant stated that they have been through 14 support coordinators and still can’t find someone ‘decent’ or ‘competent’ who they want to work with. Choice and control allows all participants to choose who they want to work with. And while supported decision making is also a major factor here… at times as humans, we don’t always know or choose what is best for us.

I said what I said.

Otherwise - why are we paying experts and specialists for their input?

In this instance of moving through 14 providers, I can only consider that the common factor in this equation is the participant and not the 14 support coordinators. Yes there are some shonky, inexperienced and plain old corrupt support coordinators out there - but in this case, basic statistics make me question:

• is this participant being abused, ghosted or receiving incompetent support from 14 different service providers, or

• does this participant have inaccurate expectations of what the NDIS can fund for them, maybe he doesn’t understand the role of support coordination, or maybe he just doesn’t like the information he is being given by his support coordinator? 

Imagine if a participant came to me as their Support Coordinator and asked if they could use their NDIS funds to renovate their holiday home, and my answer was ‘that’s probably not within the NDIS guidelines’ - so they fired me and moved onto another provider who gave them the answer they were looking for? Cause they will find one eventually.

Lot’s of participants have issues with their Local Area Coordinator. And yes there are incompetent and MIA LAC’s out there. But also sometimes we just might not like the answer they gave us and we don’t have the opportunity to fire them because they’re are a block funded service. They have no incentive to pander to participants for fear of losing their client, and the inherent conflict of interest that exists amongst many therapist - NDIS participant relationships isn’t there.

When we go to an expert like an OT or a psychologist with a question or a problem we’re facing and we don’t like the answer, should we take a moment for some serious self reflection and examine why we don’t like the answer? 

Or should we decide that they have no idea what they’re talking about or ‘don’t get us’ and cease services to head onto our third OT in a 12 month period?

Getting second and even third opinions can be helpful and supportive in this journey. However there is a line sometimes crossed where it can turn into ‘doctor shopping’ to avoid facing reality.

Is it too much therapy?

As I said, pre NDIS we saw our keyworker once every fortnight or so. And that was enough because we were given a whole list of activities and strategies to practice in between sessions.

After transitioning onto NDIS there were countless times where we met up with a therapist who said ‘how did you go practicing xyz strategy?’ and we ruefully admitted that we hadn’t really had a chance.

Looking back, there were definitely periods where weekly therapy sessions was too intensive for us. To be brutally honest, I wanted one hour a week with the therapist to compensate for all the time I couldn’t put into those therapy activities.

Was that an effective strategy? No. 😕

Hindsight is a gift my friends. And at the time I would have hated someone to say these things to me.

Not to mention we have some practices who will only onboard kids who commit to weekly therapies. It doesn’t get less person centred than that!

As parents of disabled children we are constantly trying to reconcile what is disability and what is typical developmental behaviour. 

I know sometimes my kiddo misbehaves and it’s nothing to do with his disability. He’s a kid and he is allowed to be a kid. It is a super complex process learning how to discipline a child who is neurodivergent for sure!

Fact - disabled kids are allowed to have tantrums too.

I’m left wondering multiple times with my own little man… is this challenging behaviour coming from my child’s disability, or is it age appropriate / developmentally typical? 

Is a kids crappy attitude due to cognitive difficulties or emotional regulation challenges or it is just cause they’re a teenager? How do we even figure out if we’re trying to managed a disability-related-meltdown or a child-figuring-out-their-place-in-the-world and pushing-the-boundaries plus they-didn’t-eat-lunch and went-to-bed-late-last-night meltdown?

And if it is parenting thats the isse, what does that mean for me? 

Ouch.

The truth is like a chilli. The closer we get to the root the more it burns. 

And if some of these challenges we’re dealing with at home is parenting based rather than disability based, is our allied health team brave enough to broach the subject? Is there any incentive for them to have hard conversations with us as parents when we have the option to ditch them when we hear something we don’t like?

Let’s be honest - it’s not all disability is it? The fact is that parents of disabled kids have parenting challenges just like parents of non disabled kids. 

They’re just more frequently interwoven with sensory dysregulation and sleep deprivation!

To look inward is hard. 
Like Tay Tay says ‘I’ll stare directly at the sun but never in the mirror’…

We’re not incentivised to know what’s not working with ourselves.

Walking the line between permissive parenting and a trauma informed approach is no simple task when we’re also dealing with trialling AT devices, filling out ABC charts, working in paid employment, fifty million emails from school, recruiting and rostering support workers, caring for our other children, chasing up referrals, meal planning, laminating visual schedules, taking care of our partner / selves and getting no sleep.

I’d much rather tell myself that my kiddo is screaming and trying to bite me because of their sensory requirements rather than consider it’s because my boundaries haven’t been consistent or because I’ve accidentally been practicing permissive parenting instead of gentle yet assertive parenting. 

Add to that the guilt that so many mums experience because their disabled child experiences more challenges, barriers and stigma than non disabled kids. It’s natural that we may overprotect our kids or may overcompensate in our parenting at times in our attempts to remove some of the obstacles in their pathway.

This issue is compounded when the experts we turn to for help KNOW that if we don’t like what we hear we can ditch them and move onto another therapist.

Allied health professionals are actually disincentivised to have the hard conversations. 

Which is not good.

Some of those difficult conversations need to take place. And it will rarely be the parents who instigate them. 

Now let’s picture support being provided in a block funded model rather than individualised funding through the NDIA. If little Johnie needed speech therapy, he see’s Susie because she’s commissioned to support kids in your region.  She comes each Friday morning and there isn’t an option to see someone else unless you move and live somewhere else.

Downside? Yes of course. Loss of choice and control. 

Upside? Susie knows that she (along with the family) is responsible for whether little Johnie is making progress with his speech device. Accountability.

I am a huge advocate for accountability. If a therapist is not adequately skilled enough or breaches professional standards, we want to follow due process (complaints, speak to Peak Bodies etc) so that they can recieve the support they need to up-skill, rather than just ditch them and allow them to continue to follow poor practice with other children and families. Poor practice affects outcomes and therefore the sustainability of the Scheme too!

I get that it’s a paradox. A model which allows parents to seek out therapists which align with their beliefs and values is important. Yet a model that enables a family to flit from one therapist to the next whenever they don’t want to be accountable, or hear information about their child or parenting that is uncomfortable or confronting creates a system of procrastination and avoidance. A high turnover in therapeutic supports also wastes resources for both the participant and the service provider, and ultimately costs the NDIS more.

A caring society cannot be outsourced.

Let’s look at the bigger picture here because at the end of the day we want to see the NDIS creating more independence rather than more reliance, right?

And there are times where NDIS funding is doing the opposite of what it should.

Has it allowed mainstream childcare facilities or playgroups to discriminate against our children more easily because the NDIS can fund a support worker to care for them at home? In some cases - absolutely!

If I have the funding available, is it easier for my child to be at home with a support worker than out in the community challenging themselves and pushing up against the barriers that exist? Frequently the answer is yes.

But what is the outcome when disabled kids spend more time at home or in segregated environments rather than out being seen and acknowledged in the world?

Micheline Lee is is a writer, painter and former human rights lawyer who has lived with a motor neurone disability since birth. She wrote a Quarterly Essay called “Lifeboat; Disability, Humanity and the NDIS” which speaks about how prior to the NDIS she found that the community automatically and happily took more responsibility for providing informal support to people with disability, whereas now she frequently gets asked ‘where is your carer’?

She speaks about this notion of a society that you can trust, where you know you can go out, and people will be inclusive and helpful, with the NDIS complimenting that rather than replacing it.

She explained so eloquently in an article with The Guardian how prior to the NDIS, it was expected that everyday people provide unpaid support because thats what decent humans do:

Likewise, when a child is having difficulty accessing a mainstream childcare or kinder facility, should that organisation be forced to uphold their legal obligations to make themselves more accessible by up skilling their educators, training and facilities? Or should that child be isolated at home spending their days with an adult (NDIS funded “paid friend”) living a segregated life from age 2 onwards?

Does the level of paid support available now actually work against disabled people if it is shifting all of the support they receive over to being paid support?

Like Michelle said in her article which I encourage you to read:

I could go around all day with a support worker and be safe and supported. And I could continually scout ahead to locate the limited places that are accessible and go only there. But I don’t want to be confined to my own little lifeboat. I want my community to be open to all and inclusive. I want to get bogged at a beach in my wheelchair and know people will help.

You can read the full article here.

Prior to the level of funding we have, there were moments where I had to run across to one of our well known neighbours and ask her to watch my disabled child for 20 minutes so that I could run out to attend to a quick errand. Was it awkward and uncomfortable? Yes. Did I have to get vulnerable to ask for help? Yes. Did I have to let the neighbour into our messy af home for half a hour? Yes. But do those things really matter, when this also means that my child gets care and support from people who aren’t paid to be there.

Is the NDIS letting our some of our communities off the hook of fulfilling its obligation of caring for some of its most vulnerable people? Yes. And then those communities lose the opportunity of spending time with, being exposed to and learning from disabled people.

These are examples of how the infiltration of paid support into disabled peoples lives has actually caused more dependence, more segregation and less opportunity for society to care about the support needs of disabled people and provide unpaid support because thats what good humans do.

The goal should not be only getting support when you pay for it.

So… todays words are an invitation to look at the paid and unpaid support that used to exist and currently exist in your child’s world, and the consider what has changed with the introduction of the NDIS or an increase in your NDIS funding.

The NDIS is here to help our kids be more included in their community and make genuine social connections, not to be more segregated or growing up with ‘paid friends’.

Remembering that all those non disabled folks get the benefits of spending time with our kids and learning about disability with every exposure they’re lucky enough to get.

We shouldn’t be moving towards a society where support comes with strings attached, or where people only provide some form of support because they’re paid to.

I’m telling you this because I (tough) love you.

x Anna