Whaikaha scaled back: The disabled community is alone and anxious about future support - Colleen Brown

Herald cartoonist Rod Emmerson's take on the Government's decision to scale back Whaikaha, the Ministry for Disabled People.

THREE KEY FACTS

• Whaikaha - Ministry of Disabled People, will have its functions dramatically reduced, with responsibilities for commissioning services for people with disabilities passed to the Ministry of Social Development by October.
• Disability support services comprised the bulk of Whaikaha’s $2.6 billion budget.
• The changes were announced after a scathing review found it had “no controls” to restrain rising service costs.

Colleen Brown is the Child Poverty Action Group’s disability spokeswoman and chairs the Disability Connect advisory service.

OPINION

I have just witnessed the death of an organisation, as Whaikaha; the hard-fought-for Ministry of Disabled People had its identity gouged, and was reduced to a four-lettered acronym – MoDP (Ministry of Disabled People). It was done very clinically.

Whaikaha – the word rolls off your tongue - means “to have strength, to have ability and be otherly abled”. This unique word, gifted with love, imagination, and pride sent a message to the thousands of disabled people in this country that they were valued.

That they had an identity. That they were respected. That they mattered, and importantly, that disabled people could control their futures. Years and years of lobbying, of discussions, of pleading – gone. In the stroke of two reports.

You might ask ‘What’s in a name?’ To take away or diminish a person’s name is to take away their identity.

Ask any migrant to New Zealand who adopts an English name because we cannot seem to get our tongues around the range of culturally diverse names in this country. Once you lose your name, part of your culture, your identity disappears.

It was more than the deliberate dilution of an identity that disappeared. There was a disturbing realisation that yet again, this Government views its citizenry as part of a corporation.

It only took two reports for the branding of the disability sector to change. One masthead was swapped for another, just like a supermarket.

Colleen Brown with her son Travers, who has Down Syndrome. Photo / Supplied

How we do things as a country go deep to the heart of who we are.

Who we want to be. And importantly what our vision is for those who are least empowered in our society.

The “Independent Review of Disability Support Services Phase One Report” that was ‘released on August 15 had no disabled people as part of the review team. Not one!

Imagine the outcry if a review of the Ministry of Woman’s Affairs was headed up by men. Where were the cries of “shame” levelled at the Government? For the most part we were silent.

Part of the reason for the silence was an underlying current of thinking that maybe some of those “disabled” people weren’t really all that disabled.

Under the newly minted “traffic light” system people, like our disabled son Travers who survives on a Supported Living Payment, could have that entitlement reviewed. Already we have had instances of disabled people placed on the Jobseeker benefit.

Colleen Brown's son Travers survives on a Supported Living Payment, Photo / Supplied

One father’s struggle to have his son taken off that “benefit” has now become a MSD case study. The cost to that family, is incalculable. The disability community feels as though it is being sidelined and punished for even existing. We are a burden. It seems there are too many of us, we create cost blow outs with our needs.

This year has been traumatic for the disability community.

The purchasing rules and funding for equipment and modification services for disabled people was “paused” on March 18. The stress and anxiety this caused is still being felt five months later.

Another “pause” has just been announced. This time, the very successful Enabling Good Lives (EGL) programme, with a dedicated budget, being rolled out nationally has been paused. EGL is a way of living your best life as a disabled person.

For years disabled people have had little choice and control over their lives. Slowly, oh so slowly, this was changing. Now it too is “paused”. But the lives of disabled people and their whānau is never on pause. We have to carry on.

With this latest pause came the crushing realisation that a very important thread of hope was being extinguished.

The disability community is anxious. We are afraid. We feel alone. Our tribe is dispersed.

The fear is that disability support funding will be capped. We are left negotiating with an indifferent ministry (MSD) for our support services. The disability community is full of stories about how disabled people and their whānau are treated by MSD. We are not optimistic about the future.

Whaikaha may not have been running at full throttle. It may have needed more support from its host organisation MSD - but it was a start. Even operating at 70% efficiency we were moving in the right direction. There may have been risks – but together we could have worked through them.

Yet again, the disability community has been left outside, looking through the glass while things have been done to them, not with them.

Never has the disability mantra “Nothing about us, without us” seemed so hollow.