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Changing a System That Confounds and Crushes

Tom Belford01 August 2019

BB48

The social service ‘system’ that is supposed to help and protect the most vulnerable and needy in our community is seriously broken. As a stark example, consider the actual case of Ashlee and her son, Luca.

Luca, nine years old, suffers from Friedreich Ataxia, a rare genetically-inherited disease that steadily incapacitates its victims, with progressive impairment of muscle coordination (ataxia), loss of muscle strength and sensation, and impaired speech, vision, and hearing. About 50 New Zealanders have this disease. It cannot be cured. Luca’s condition is further complicated by cardiomyopathy, hardening of the heart muscle.

Ashlee, a single mum, brought her and Luca’s situation to my attention out of sheer desperation, brought about by un-ending bureaucratic shuffling, lack of responsiveness and insensitivity by a system that is supposed to care for and about those who require its services.

Here are some excerpts from the email she initially sent (published with permission):

“My life with the system is a mess. It took us around 2 years for Ministry of Education to employ a physio to work with my son. It has taken 5 months for DHB to replace our social worker. Our normal point of contact was always our social worker, our support is gone. 

Work and income has been no better, it’s a system where you battle to get any money so you can support your child. To get that support the proof requires a GP visit to tell them my incurable child is still sick. I asked for support in claiming extras. The lady was rude and unhelpful. She never helped. No lists on what I can claim, no description, no support.

The term use it or lose it (his muscles) are our life and our fight. The frustration to keep my son moving so he can stay in our life longer. Currently we battle around multiple trusts to support any physical activities we can get. A support letter is required every time and I have to explain over and over again why Luca needs this.

I’m a broken mum. I want to feel like we could be a normal family but we never will be. We are isolated financially, struggle and judged everywhere. I’m one person battling a overworked system. I struggle every day. I cry most. 

Have you ever watched a child scream in pain cause his pain meds never work and he can’t use his legs. It’s quite normal for us. At nights it means no sleep for me, at days it means he’s in a wheelchair, not able to go to school or we are confined to our home. I’m exhausted.

I dream of a life where I can be a mum and not a Dr, not a physio, not in a battle. I just want normality. Not only for me but for those who are living lives like mine. I want help. The system needs to better help these families and answers should not be in a million directions and lacking support. The system is failing families and taking away our chance of normality.”

You can probably tell from these words that this is not an inarticulate person, not someone looking to fob off responsibility, not someone without persistence and fortitude.

In her email, Ashlee described the various ways and places she’s sought support for her son and the run-arounds she’s typically received. “Not my responsibility” seems to be a common refrain.

When I received the email, I reached out to Jacoby Poulain, DHB Board member for advice and insight … what did she think, how might these issues be addressed, how systemic might they be?

And then met with Ashlee to get a better feel for who she was, better appreciate her son’s condition, and better understand her efforts to get help from ‘the system’. Could it be as bad as she wrote?

It is.

I came away astonished at her resilience (a single mum, remember) and dismayed at the bureaucracy’s response (more accurately, non-response) to her and Luca. If someone as determined as Ashlee can get chewed up and spit out by the system, what about all those less persistent, less articulate, less strong?

And I came away determined to help. First, to help see that the immediate needs of this family are met. But even more importantly, to identify the systemic problems that seem to afflict supposedly caring bureaucracies like the DHB, Ministry of Education, WINZ, Child & Family Services.

With respect to Ashlee and Luca, some people in the community have already responded with immediate help with some of the family’s day-to-day needs. I expect others will come forward. But obviously we can’t take on every individual case like this. That’s supposedly why we have a social service system.

And so, with respect to the system, BayBuzz has begun to probe, ask questions and identify issues and solutions. If we can’t get to the bottom of the blockages and buck-passing, and drive some change in how these agencies treat the people who vitally need them, then surely it’s a lost cause for their poor ‘clients’ on their own.

BayBuzz will report on our progress – and results for Ashlee and Luca – over the next few months. Hopefully this will be a journey with a happy ending … for everyone like them. 

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Tom Belford01 August 2019

BB48

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