Day 38 - Northern Advocate - Disability funding cuts huge blow for Whangārei parents of disabled son, 23

Disability funding cuts huge blow for Whangārei parents of disabled son, 23

By: Denise Piper

Northern Advocate: 27 Apr, 2024 06:00 AM

The hospitals are being asked to save an unrealistic amount of money, there is a shortage of GP's and a third of NZDF's navy ships aren't being used due to staffing shortages.

When Whaikaha - Ministry of Disabled People suddenly announced new restrictions to its purchasing rules last month, it meant huge changes to people with disabilities and their whānau. As Northland has a high percentage of disabled people, reporter Denise Piper spoke with one Whangārei family to understand what the changes mean for them.

Kristy Kewene loves her son James very much but admits caring for him is often a handful.

The 23-year-old has autism, cerebral palsy, global development delay, and a heart condition which caused a stroke when he was young, leaving him unable to talk, shower and dress himself.

James also has other medical issues, including seizures, musculoskeletal pain and depression, and has a long list of medications to take.

Kristy Kewene's son James, 23, has a severe disability but she and husband Brett are unable to take a break. Photo / Michael Cunningham

Kristy describes him as like a 3-year-old who often throws tantrums. However, he is not a young child - he is a 23-year-old man with the strength to match.

“He’s thrashing around and if someone’s in the way they might get hurt... He’s intense.”

Kristy and husband Brett’s Kauri home has borne the brunt of this violence over the years.

Walls and doors have had to be covered with tough material or still show the wounds from James’ punches and kicks. Lights are recessed so they can’t be smashed, and the family’s living room is bare of ornaments, TVs and pictures.

James’ bedroom includes a TV, high on the wall protected by clear plastic, plain blue walls and wardrobe door with kick holes.

The home’s ranchsliders will need to be replaced with toughened glass, at an expense of $2600, Kristy said.

James has one caregiver during school hours and a second on weekday afternoons, to enable Kristy and Brett to work. But after 6pm, the couple are on their own juggling caring for their son and getting some much-needed sleep.

James’ sometimes violent nature also means the Kewenes are unable to accommodate their grandchildren, aged 1 and 3, and they have to snatch small moments with them and their older daughter.

“We just love our son but it’s really hard,” Kristy said.

Previously, James was funded to go into respite care one weekend a fortnight, giving Kristy and Brett time to catch-up on sleep and housework. However, a lack of staff to manage his high needs means the respite care is no longer able to take him.

Kristy Kewene says she loves her son James but caring for him takes a toll. Photo / Michael Cunningham

The whānau qualify for $15,000 a year from Whaikaha - Ministry of Disabled People to spend on respite, as part of its individualised funding programme.

Kristy said she and Brett organised a carer to come into their home - where James feels comfortable and they are long past worrying about items being smashed - while they stayed for two nights in a hotel.

The couple could not get a proper rest staying in their own home, even while a carer was there, because James would just smash on their door and want attention, she said.

“It’s not like we’re living the high life,” Kristy said.

“Having the hotel was huge - we would just go there and sleep all Saturday or lie in bed and watch TV. It was lovely, it was such a weight off.”

The Kewenes had just two weekends away when Whaikaha suddenly announced changes to the purchase rules for the individualised funding, cracking down on how the funds could be used.

While the maximum of $15,000 a year remains, the funds can only be spent on a carer - not on a hotel or anything for Kristy and Brett’s relief.

The changes leave them feeling like they have done something wrong, Kristy said.

“It’s like they don’t trust me to use that money. I’m not a thief,” she said.

“That money is no longer there for us to have respite - that’s wrong. Our kids are difficult, we need to have this... there’s nothing to help us.”

Other parents of disabled children also have to stop spending their funding on things like massages, which Kristy said are needed for those lifting their disabled child.

The Kewenes have little funds to pay for the accommodation themselves, after they cover the costs of house repairs, new clothes needed for James and a dedicated car for his carers to use.

The couple run a forestry business but Kristy said her earning potential has been severely cut because of caring for James: She had to leave her full-time chartered accounting job two years ago because she was unable to find a day carer and now works on contract four days a week.

They would prefer respite care or a fulltime residential facility for James - especially because he loved the respite care and having a break from his parents - but options are very limited in Northland, she said.

With the disabled sector being under funded in the north, Kristy said the Government could at least continue the flexible funding for families.

“If you think I’m being frivolous, then put the money into bricks and motor respite care homes or training people really well so there’s lots of caregivers.”

Changes to ensure money spent on disabled people, ministry says

Whaikaha - Ministry of Disabled People said the changes were to address pressure on funding and ensure those with the highest need are prioritised.

In a video to the disabled community, Whaikaha chief executive Paula Tesoriero apologised for the stress and anxiety caused by the way the funding changes were announced.

“These changes were needed because we have seen a significant and ongoing increase in demand for our supports. It was important for us to act immediately.”

Tesoriero said she and the disability issues minister will now work on broader changes for the upcoming financial year, to put the system on a “more sustainable financial footing”.

Disabled people, tāngata whaikaha Māori, carers and whānau will be able to have a say in these decisions to ensure the funding is spent where it is most needed, she said.

In March, then-Disability Issues Minister Penny Simmonds said the changes were not a reduction in funding but were necessary to ensure the funding was used as intended to help disabled people

However, Simmonds was stripped of the portfolio on Wednesday, with Prime Minister Christopher Luxon saying “major financial issues” in the ministry’s programmes have been discovered and it is important to have a senior cabinet minister consider the issues.

Louise Upston, who is also Social Development and Employment Minister, has taken up the portfolio.

Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.

Day 12 - Northern Advocate - Come on Minister Simmonds, we need a champion of our people - not a champion of the covert hatchet

Jonny Wilkinson: Come on Minister Simmonds, we need a champion of our people - not a champion of the covert hatchet

By Jonny Wilkinson

Northern Advocate 30 Mar, 2024 05:00 AM

Surely the Minister of Disability Issues, Penny Simmonds should have known about these demand pressures. She is not new to these issues.

OPINION

Beware the Ides of March.

Okay, it’s a couple of days out but the announcement about changes to Disability Services on March 18 was foreboding to say the least.

Out of the blue, Whaikaha – Ministry of Disabled People proclaimed changes to the Purchase Rules for Individualised Funding.

The reason given was that: “Whaikaha has a fixed amount of funding. Growing demand has meant they are already forecasting an overspend in this financial year and to manage these demands and to ensure that disability funding is directed to those that need it the most, Whaikaha has made some difficult decisions”.

The changes target Flexible Funding. This funding has enabled disabled people and their whanau to be self-directed about the services they access through mechanisms such Individualised Funding, where they can manage their own allocated budget by hiring people or buying goods or services they need.

This meant that disabled people have been able to hire a friend or a family member, or someone else they have connected with and who has an understanding of their needs.

This self-determination is articulated by the Enabling Good Lives (EGL) approach, a foundation and framework to guide positive change for disabled people, promoted by … Whaikaha.

The news sent shockwaves throughout the disabled community, instantly raising a multitude of questions.

Where was the consultation, given, according to its website: “The Government created Whaikaha - Ministry of Disabled People to lead a true partnership between the Disability Community, Māori and Government”.

Why didn’t the current or past Minister of Disability Issues advocate for additional funding to address increased demand?

How do these changes in Flexible Funding contribute to the EGL Approach and the much-hyped System Transformation?

The decision to implement restrictions to disability supports strikes at the very core of Whaikaha’s principles. It not only undermines the progress made in enhancing the quality of life for people with disabilities but also threatens to unravel the fabric of inclusivity and partnership that Whaikaha sought to weave.

One of the key pillars of the EGL approach is self-determination. By empowering individuals to make decisions about their own lives and support needs, Whaikaha aimed to foster independence and dignity.

However, the funding cuts jeopardise this fundamental principle, forcing individuals to navigate an already complex system with fewer resources and support structures.

Since the announcement, we have been repeatedly told that individual allocations will not be cut, but rather that the criteria around the flexibility will be tighter and clearer.

But hang on, isn’t the catalyst for these changes a budget blowout, which requires some significant savings to address the budget shortfall?

Oh I get it: By tightening the criteria on Flexible Funding, some disabled people and whanau will not be able to spend all their allocation because the criteria doesn’t give options that work for them.

They have no respite facilities for their disabled whanau member to utilise - maybe they are in Tai Tokerau where external respite providers are close to zilch?

Where the only way dog-tired carers can get a break is to book into the local motel, while a carer steps into their worn-out shoes for a weekend and … sleep.

In my conversations with such 24/7 carers, this uninterrupted sleep throughout the night is the main goal.

If they were getting a massage for an overworked back, dealing with the lifting, positioning, toileting and dressing of their loved one - well, good on them.

But, not any longer … bingo.

No cuts in allocations, but hey presto - reduced costs.

Clever but pernicious. Some whānau are already struggling to navigate the intricacies of Individualised Funding and cannot use their full allocation right now, without imposing a list of exclusions which is ambiguous at best and cryptic at worst.

Respite options are included in the changes in criteria, with the ability to purchase items that would contribute to relieving carers of continual attention to their loved ones, such as electronic devices or recreational equipment like trampolines (which can be very therapeutic for some autistic children) are for the chop.

Yep - the same Ministry that has spent the past 18 months convincing whanau that they can be creative and flexible, to work around the glaring systemic gaps in provision for disabled people, is unfortunately having to sing to a different piper.

Surely the Minister of Disability Issues, Penny Simmonds should have known about these demand pressures. She is not new to these issues.

The Southland Times on March 31, 2022 quoted the then Opposition MP for Invercargill: “As the National Party’s disability spokesperson, I’ve been working hard to achieve improvements for carers and to get a commitment from the Government on the provision for extra support”.

Respite care payments are a major stumbling block. They are capped at $80 a day, after a disappointing $5 increase from the Government last year. They fall well below the minimum wage and make it virtually impossible for carers to attract people to these roles, unless they top up the funding themselves.

Come on Minister Simmonds - we need a champion of our people- not a champion of the covert hatchet.

Put your money where your mouth is and get in there and advocate to your cabal of colleagues. After all, the measure of a civilised society rests with how it treats its most vulnerable members.

Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangarei based disability advocacy organisation.