Carers were already struggling and then came the disability funding cuts
By: Victoria Coleman
Taranaki Daily News; 5 am, Tuesday 3 September
Victoria Coleman is a New Plymouth mother-of-two and staunch advocate for the disabled community.
OPINION: The previous Disability Minister Penny Simmonds would have you believe as carers of family members with disabilities we are off having pedicures or massages at leisure.
But, believe me, nobody is sitting at home getting rich caring for their disabled family member and revelling in the peace and quiet.
We’re struggling. The little support we do get means we are usually only just managing, if that.
The first few years as new parents with our son were a struggle beyond anything I have ever experienced in my life.
Victoria Coleman’s son Levi was born with Down Syndrome and two rare bowel disorders.
VANESSA LAURIE
Our son was incredibly unwell. He was born with Down Syndrome and two rare bowel disorders. He also has an Autism diagnosis.
Our early days as new parents were marred by endless uncertainty. We barely slept at all for the first four years.
We had to perform medical procedures for our son at home and he was up most nights, often all night, screaming in agony. No parent would wish this on their worst enemy.
If and when we did sleep, I was constantly scared that he would pass away.
I would urgently wake from the brief periods of sleep that I did get and quickly rush to him to make sure he was still breathing. We had to battle endlessly just to get our son what he needed, just for him to stay alive.
Our main support network for hands on support consisted of my elderly mother.
We are incredibly grateful for her care, but our son’s high needs are far more than what we should expect of an ageing person with her own increasing needs.
There was nothing available for us in the way of respite.
No care was offered from disability services to give us a break and make sure that we were all supported enough. We were told our son was too young for disability support funding, regardless of how high his needs were.
A couple of years ago we finally got some support in the form of individualised funding, which meant we could access some respite.
We finally felt like we were getting our feet on solid ground as parents of a disabled child and could take a breath.
But as soon as we had gotten our heads around how we could use flexible funding, the rug was viciously and cruelly pulled out from under us.
On March 18, the Government immediately removed the flexibility from disability funding, without notice, via a Facebook post. There was no formal communication to our community.
We were left scrambling to figure out how our household was going to function.
Do not be fooled by the Government’s claims that disability funding was being abused, and therefore this was a benevolent measure to ensure that disabled people are getting what they need.
This was absolutely a cost saving measure at the expense of people with disabilities and I have no doubt the Government believes if it can make the funding inaccessible and impossible to spend it can justify cutting it.
The disability community was hurt by this announcement, and in that moment our faith in this Government was destroyed.
I knew there were more attacks on the disability community to come. Predictably, the cruelty continued.
Just a few weeks ago, Disability Minister Louise Upston gutted Whaikaha, the very ministry that the disability community fought so hard for, and only got established two short years ago. Again, this was done entirely without consultation with the disability community.
The number of people requiring disability funding has increased significantly and funding has not been increased to meet this need.
But rather than giving Whaikaha and the disability community what it needed to succeed, the Government wanted to score brownie points at the expense of disabled people by labelling it a failure and pointing the finger at the previous government.
Nowhere in the “independent” review of Whaikaha was it recommended disability support services should be transferred to MSD.
Then came the leaked document which only showed the potential for more devastation.
The Government is considering restricting access to residential care, freezing funding and cutting existing funding packages. They propose to do this by pulling forward people’s annual review dates so this can happen immediately.
Families like ours are living in constant fear. I am sick to my stomach all day, every day and on the verge of tears worrying what will come next, while still trying to manage my caring duties. The mental load and distress these cuts are causing people in our community is immeasurable.
I am already frazzled and exhausted but every day I must also fight for my son’s most basic rights as a human being, in every aspect of his life.
I am scared they will come for his continence products next, cut his child disability allowance and take away the funding he does have.
I am afraid they will remove the funding managers who advocate for the disabled community daily.
Make no mistake, caring for a disabled child can be gruelling.
Most often, as our children get older it only gets harder and more demanding, and as we become older and less able ourselves, we still need to care for our adult child. I do not have the privilege of looking forward and thinking things will get easier, like most parents do.
Disability rights in our country have been pushed back decades by the Government in just a few short months.
We fear constantly for our son’s future and the future of every person living with disability in our country, while our very demanding work as whānau care givers is constantly and massively undervalued.
We do not deserve to live with being demonised and dehumanised by our Government too.
– A protest against changes to the Government’s disability funding will be held on Friday at Puke Ariki in New Plymouth at 11am.
- Taranaki Daily News
Last Updated 09/09/2024
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