Day 172 - Taranaki Daily News - Disability community marches in protest against Government changes

Disability community marches in protest against Government changes

By: Helen Harvey

Stuff: 5 am, Saturday 7 September 2024

Elisabeth Mullen, 11, told marchers she was more than just someone who couldn’t walk.

VANESSA LAURIE / STUFF

Chants of “nothing about us without us” and “disability rights are human rights” rang out through New Plymouth’s CBD on Friday as more than 200 people from the disability community marched along Devon St.

The march ended outside the Gill St office of New Plymouth National MP David MacLeod, who wasn’t there as he had a bereavement.

Once there several people with disabilities shared their stories as did those who cared for them.

Elizabeth Mullen, 11, told the crowd she had cerebral palsy, which meant she couldn’t walk.

The disability community came together on Friday to march through New Plymouth’s CBD to bring awareness to the issues they’re facing as a result of recent government policy changes.

VANESSA LAURIE / STUFF

“But that doesn’t mean I can’t do a bazillion other things. Let me live my life. I am more than just not being able to walk.”

Quinn Jones, 8, spoke about his brother Nash, 7, who has Lesch Nyhan Syndrome, which causes intellectual disability, and other issues, including severe arthritis, and poor muscle control.

Quinn told people how hard it was for Nash.

The group were protesting Government changes to funding and support that were made without consultation or warning.

Harry Harris, who is visually impaired, said they wanted basic human rights that everyone else took for granted.

VANESSA LAURIE / STUFF

In August, a restructure of Whaikaha- Ministry For Disabled People was announced. Whaikaha will lose responsibility for delivering support services, and the move to the Enabling Good Lives approach will be put on hold.

This follows on from changes to individualised funding that were made without notice in March. Pedicures, massages and some funding for respite were among the cuts.

Harry Harris, who is visually impaired, said a pedicure is not a luxury.

“It’s a basic necessity of life. We want basic human rights that normal everyday people take for granted. Many of us can’t reach our toenails.”

Some people needed a pedicure before their toe nails got infected and they ended up with gangrene, Harris said.

March co-organiser Francine Jones, and Quinn, 8, look after Quinn’s brother Nash, 7, who Lesch Nyhan Syndrome.

VANESSA LAURIE / STUFF

March co -organiser Francine Jones said she needed a monthly massage because her son, Nash, weighed 22kgs.

“He's a dead weight, and I'm lifting him all the time. And my body is freaking sore, you know? He can't do anything for himself, ever.”

And spending some funding on getting a hotel room occasionally, if they can get care for Nash for the night, was important not only for her relationship with her husband, Nathan, but for their other children, Jones said.

“Making the time so that we can actually spend one on one good time with them as well, because their lives are frigging hard.”

She was devastated when she heard about the changes, she said.

“It's causing a huge amount of anxiety.”

Co-organiser Victoria Coleman said the Government was making decisions that massively affected their lives without talking to them.

VANESSA LAURIE / STUFF

The march was organised because she had been talking to many people who were affected by it and were very stressed.

Co-organiser Victoria Coleman, whose son Levi, 5, has Down syndrome, autism and two rare bowel disorders, said they want back what had been taken away.

“They've taken away our rights that were fought so hard for. I mean, this is a fight going back decades. People put themselves on the line, put their bodies on the line. It looked like the world was changing. And now we've been shot back to the dark ages.”

The Government was making decisions that “massively impact people's lives”, taking away their freedom, taking away their choices and their independence, Coleman said.

“And they've done that without speaking to us personally. For me, it's too late for consultation. They need to reverse the changes they've made and then talk to us.”

- Taranaki Daily News

Last Updated 08/09/2024

Resources

• https://www.stuff.co.nz/nz-news/350406041/disability-community-marches-protest-against-government-changes

Day 168 - Taranaki Daily News - Carers were already struggling and then came the disability funding cuts

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

Resources

• https://www.stuff.co.nz/society/350400559/carers-were-already-struggling-and-then-came-disability-funding-cuts

Day 69 - Manawatu Standard - ‘This has become very real’: Disability cuts devastate sector

‘This has become very real’: Disability cuts devastate sector

By: Alecia Rousseau

Manawatu Standard: 3:00pm, May 27, 2024

Tangi Utikere, left, and Priyanca Radhakrishan told the crowd they were doing all they could to help the disabled community.
ADELE RYCROFT / MANAWATŪ STANDARD

The Government’s cuts to disability services have left people desperate, frustrated and unable to access care, a meeting has heard.
A full house packed into the Community Leisure Centre in Palmerston North on Friday to hear from Labour’s Minister for Disability Issues Priyanca Radhakrishnan and MP Tangi Utikere.

The pair told the crowd they were aware of the devastating impact the changes to flexible funding had on people and said they were doing their best to challenge Whaikaha, the Ministry of Disabled People, on its decision.

The ministry announced in March it was changing purchasing rules for disabled people and their carers effective immediately.

This happened without consultation and was announced via Facebook.

People told the public meeting there is too much uncertainty and they are reaching breaking point.
ADELE RYCROFT / MANAWATŪ STANDARD

Since then, the ministry had provided clarifications to what it says are “temporary” rules that impact things such as the purchasing of sensory items, respite care and the ability to use funding during school hours.
But Radhakrishnan said the “hurt and damage” was already done and families were reeling from the decision to take away their flexibility.

It also went against the approach of Enabling Good Lives, something that was mandated when National was previously in power.

Families had told her they were unable to pay carers to accompany them on trips or for therapy their children needed.

One woman’s story in particular stuck with Radhakrishnan.

A youth leader in Auckland had been unable to attend a gathering at Parliament because she could not take a support person with her.
Many who did go “couldn't access food, water or toilets”, she said.
The ministry had now ”walked that [restriction] back a bit” and anyone claiming those services prior to March 18 could continue doing so.

“There is a strong sense that people are just exhausted and at breaking point and this is almost pushing people over the edge frankly.”

The Minister for Disability Issues at the time, Penny Simmonds, who had since been replaced with Louise Upston, said the changes were because of financial pressures.

Pip Brunn, who is on the regional leadership group for Enabling Good Lives, says people are not getting access to the funding they’ve gone through huge processes to get.
ADELE RYCROFT / MANAWATŪ STANDARD

But Radhakrishnan said the Government should have topped up the funding, and there was a “timeline of inaction”.

“She [Simmonds] knew in December, signed a briefing on March 14 for these changes that were then announced on March 18.

“I think she dropped the ball on this and that's probably reflected in her losing her portfolio.”

Flexibility was introduced by Labour in 2022 and that saw demand increase because a number of people previously unable to access funding could now do so, she said.

“When you bring in flexibility, you then start to get the true measure or gauge of need.”

Toni ‘Ants’ Burgess told the crowd a flexible approach from Enabling Good Lives had helped her out of a wheelchair and off crutches.

Radhakrishan says the changes have impacted many people and all in different ways.
ADELE RYCROFT / MANAWATŪ STANDARD

She had gained independence and completed half-marathons, but her next four events were canned because she could no longer “koha” or pay a support person to accompany her.

She said there had been no consideration of the risk when making the changes, especially for those who were suicidal or suffering from mental health issues.

“The real life impact of this has become very very real in our city this week.”
She worked in the disability abuse sector and said they were seeing “more and more” people struggling with the ministry’s decisions.

“If people aren’t supported properly they are going to go through what I did in 2019 when I had a massive breakdown because they are not supported properly.”

The public meeting allowed disabled people to share the personal impact the chnages had on their lives.
ADELE RYCROFT / MANAWATŪ STANDARD

She “could not believe” some of the restrictions placed on whānau and their supporters.

“It’s absolutely insane. I spoke to Oranga Tamariki last year and we all know supported families are safe families.

“Here in MidCentral we had the least uplifts of disabled kids during lockdown, we know what works.”

Pip Brunn, who was on the regional leadership group for Enabling Good Lives, said people were not getting access to the funding they’d gone through “huge processes” to get.

“They’ve had to share their whole entire lives, they’ve had to justify why they should be able to leave their home.

“They’ve had to go through all of these things just to get the support they need just to survive [and] to be able to wake up the next day.”

Utikere said one thing he was hearing was the new rules “fly in the face” of Enabling Good Lives, which was about giving people greater choice and control over their lives.

“There's a fair bit of anxiety that this means that the pathway of the trajectory that we were on, which was to extend Enabling Good Lives, has now been derailed.”

Whaikaha has since admitted it had “a lot to learn” from the way it made the “confusing” announcement, and said it was committed to working with those in the sector.

An independent review into the disability support system was also under way and Upston said this was to strengthen its long-term sustainability.

- Manawatu Standard

Last Updated 27/05/2024

RESOURCES

• 
  

Day 41 - Stuff - Government announces there will be an independent review into disability support services

Government announces there will be an independent review into disability support services

The Government has announced an independent review into the disability support system funded by the Ministry of Disabled People – Whaikaha. 

Disability Issues Minister Louise Upston said the review will look at what can be done to strengthen the long-term sustainability of Disability Support Services to provide disabled people and carers with certainty around what they can access.

“We all want to see the best outcomes for the disabled community, their families, and those who care for them, and the coalition Government is focused on maximising this support.

“Since coming into office we have received worrying advice about the risks inherited by the ministry when it was set up less than two years ago, and whether it was adequately equipped to manage them.

“Crown expenditure on Disability Support Services, adjusted for inflation, has roughly doubled since 2005-06. The ministry now funds services for approximately 50,000 disabled people and equipment modification for approximately 100,000 people, administering an annual appropriation of $2.3 billion."

A three-person review panel will be appointed within the next few weeks. It is expected to make recommendations within four months after that. Upston will then take those recommendations to Cabinet, and then consult the community. 

“This work will be funded through the ministry’s existing budgets.

Cabinet has agreed that the panel will consider: 

• The purpose of different funding streams within Disability Support Services and the appropriate level of flexibility for each.

• Eligibility for Disability Support Services, with a focus on entitlement to and allocation of funding.

• The capability and processes that need to be in place within the Ministry of Disabled People – Whaikaha to manage Disability Support Services, including for risk management, commissioning, and organisational form and structure.

• Interactions between Disability Support Services and other systems (including health, welfare, and education).

• The legal framework for Disability Support Services.

• Stakeholder relationships.