
Hesitantly hopeful
Hopefully all sectors of the community are listened to as we move forward with the recent announcement of the Ministry for Disabled People.
Friday 29th October 2021 was a momentous day for the disability community. The significant announcements made by Ministers Sepuloni and Little are long-awaited and very welcome.
In essence there are three announcements:
- The first is the creation of a Ministry for Disabled People hosted by MSD.
- The second is the national roll out of the Enabling Good Lives programme to support disabled people to lead the lives they want.
- Last is the removal of barriers to disabled people through the tabling of the Accessibility for New Zealanders Bill due to be introduced later this year.
Congratulations to all those who have worked so hard to bring these pieces of policy and legislation to fruition. The new policies are bold and have the potential to be transformational. It is a social justice and human rights package. It is about time!
Parent voices are important for many reasons, most critically for those families that represent the needs of their whānau with high and complex needs, for those who don’t have a voice and rely on those who know them best to speak on their behalf.
The cabinet paper outlining the proposals ticks many boxes for me. It exposes the medical model for what it is and does to the disability community. It highlights the risks of other government ministries abrogating their responsibilities to the disability community. It has put MSD as the Ministry in charge of promoting a social model of disability. It has exposed the splintered, confusing, disconnected existing system and intends to deliver a quality service to disabled people and their families. It is calling for true accountability. It is an evolving model that will change as required. It is music to my ears.
As with all policy statements the devil is always in the detail. I instinctively take a cautious approach to any new policy initiatives. I do worry about the new Ministry trying to be all things to everyone. It has a massive line-up of responsibilities. A junior player, possibly a minnow, amongst bigger ministries in government.
For me, there was one glaring omission in the line-up for the Friday 29th announcement. There were no parent organisations represented on the panel hosted by Attitude Live. Window-dressing you might say – but no parent bodies were given a pre-announcement briefing either. The panel's participants were reportedly approved by the Minister’s office. Whichever way you go, being omitted or included sends a signal. This omission has been picked up very quickly by parents on social media and by parent organisations across the country. Disability Connect and other parent organisations advocating for the disability sector have been communicating with government for years now about the ned to formally include them at the table when discussions around the development of policy affecting disabled people occur. We have been rebuffed with comments along the lines of – ‘but we hear from parents all the time’ and ‘we consult widely.’ There is a difference. Formal versus informal – you can’t beat a formal agreement. With one you have to take notice of and engage with the people sitting at the table – with the others going on to the list of people you ‘will get back to’.
Watch a replay of the Disability Systems Transformation and Accessibility Announcement.
The saying, ‘nothing about us, without us’ is a powerful mantra. However, its meaning diminishes if there is no representation on governance group for over half the people receiving government funded disability supports who have an intellectual disability. Supporting a disabled person is not a fleeting obligation. It is a commitment that is lifelong and often shared by the entire whānau.
Parent voices are important for many reasons, most critically for those families that represent the needs of their whānau with high and complex needs, for those who don’t have a voice and rely on those who know them best to speak on their behalf. In the early years especially, it is parents who front up to MSD trying to get support for their children, and who brave less than enthusiastic schools when enrolling their children. You would think that sort of experience would be welcomed around the official table.
I’m the first to admit, I’ve been singed somewhat by the system. I was part of the expert’s group asked to write the New Zealand Disability Strategy in 2016. The only parent. It was at times a lonely and hostile environment. I’m pretty tough but it took gumption to stare down the critics in that experts’ group who wanted the word ‘family’ removed from what I considered to be essential parts of the document.
Regardless – we did the job and I looked forward to the next part – putting it into action. However, I soon learned that whilst it was apparently critical for a parent to be on the construction side of the policy there was no room for one to be on the implementation side of it – the accountability side of it. I still don’t get that.
Colleen accepts her induction into the Attitude Awards 'Hall of Fame' in 2018
Armed with that sobering experience I went looking for where representatives of parents’ organisations were going to be placed within the new structure. Yes, we will be consulted on the new name for the Ministry. On page seven of the cabinet paper there is mention of working in ‘partnership’ with disabled people, but no mention of family and whānau. In the same section it states that ‘the system, ‘gives full effect to the voice of disabled people, families and whānau.’ I might sit outside the tent on this one – but to me – you only give full effect to all of those groups if they are all sitting at the governance table.
These policies are a gigantic leap forward. However, in my experience, in advocacy and in the political sphere – it is astute to have representation inside the tent; all voices together; respectfully debating the key issues and fully representing those who are the most vulnerable in our community.
There is a lot of work to be done. All of us need to be involved constructively to make it work, inclusively and in true partnership.
---
For more analysis on the announcement read:
Big Transformation needed for disabled people - Paula Tesoriero
Watch, learn and be inspired
Get your favourite stories in your inbox.
Thank you for subscribing
You'll receive your first newsletter soon.
Sending...
{{ serverError }}



Being Me: Eamon
32-year-old Eamon Wood has travelled all over the world in his wheelchair. Now he’s back home in Chr...
Being Me: Eamon



2021 Attitude Awards Special
Join Simon Dallow as we celebrate achievement in the disability sector. Wonderful stories, a stunnin...
2021 Attitude Awards Special



Being Me: Julia
Artist and disability activist Julia Young lives with Autistic Spectrum Disorder. She has learned to...
Being Me: Julia



Being Me: John
Sport has been a huge part of John Marrable’s life since an accident put him in a wheelchair. His ma...
Being Me: John



Being Me: Maisie
Maisie Chilton lives with Cerebral Palsy. Though she grew up around her mother's art, she didn't thi...
Being Me: Maisie



My Perfect Family: Alex
Performance is in the Walsh family’s DNA. When their youngest son Alex was born with Down syndrome, ...
My Perfect Family: Alex



Bulletproof: Shaz
Less than two years after losing her left arm, Shaz Dagg became the first female amputee to complete...
Bulletproof: Shaz



My Perfect Family: Max and Grace
Siblings Max and Grace are off on a road trip to Queenstown, putting Max's independence to the test ...
My Perfect Family: Max and Grace



Being Me: Denise
Living with autism and anxiety disorder has made social connections difficult for Denise. But in a n...
Being Me: Denise



My Mysterious Body: Huntington's Disease
Micheal and Chris both have Huntington’s Disease, which threatens to shorten their lives. It's a gen...
My Mysterious Body: Huntington's Disease



My Perfect Family: Tri Rugby
For members of Christchurch's Tri Rugby team - who live with intellectual disabilities - rugby is mo...
My Perfect Family: Tri Rugby



Being Me: Lusi
Groundbreaking performer Lusi Faiva reconnects with her Samoan heritage as she makes her mark on Wel...
Being Me: Lusi



Being Me: Cyrus
Resourceful 13-year-old Cyrus, who lives with Cerebral Palsy, wanted an accessible swing in the park...
Being Me: Cyrus



My Perfect Family: Hatty
Hatty Walton is a 13-year-old star on the show Mystic, who lives with a hearing impairment. Hatty ho...
My Perfect Family: Hatty



Being Me: Josh Davies
26-year-old Josh Davies is a stand-up comedian trying to turn making people laugh into a full time l...
Being Me: Josh Davies



Being Me: OJ
Eighteen year old OJ lost his sister to Cystic Fibrosis; a genetic lung condition he has also inheri...
Being Me: OJ



Lisa Adams - Para athlete
Lisa Adams' life hasn't always been easy, but athletics is providing an opportunity for a change of ...
Lisa Adams - Para athlete



Being Me: Marfan Syndrome
Over 6 feet tall at just 13 years old, Milly manages the rare condition Marfan Syndrome, while griev...
Being Me: Marfan Syndrome



Change Makers: Dr Huhana Hickey
Dr Huhana Hickey is a key figure in the disability community. She's organising a hikoi to seek a bet...
Change Makers: Dr Huhana Hickey



Being Me: Carlos
Carlos Biggeman is an award-winning photographer, he’s about to publish a book of his work. He was b...
Being Me: Carlos



Bulletproof: Pieta
Pieta Bouma was just 19 years old when she broke her back while living in Ecuador. Nearly two years ...
Bulletproof: Pieta



Bulletproof: Sam
Following a spinal cord injury, young Tauranga man Sam Fitness has found a clever way to continue to...
Bulletproof: Sam



Outward Bound Pt2
As their Outward Bound adventure continues, a group of people living with physical disabilities tack...
Outward Bound Pt2



Outward Bound Pt1
A group of people living with physical disabilities arrives at Outward Bound, in the Marlborough Sou...
Outward Bound Pt1



Being Me: Jono
At birth, Jono Nelson was given just 24 hours to live. Now the Timaru-based hand cyclist, who lives ...
Being Me: Jono



My Perfect Family: Perrones
Young anime artist Bee Perrone lives with the rare condition, Ivemark Syndrome. Understanding this i...
My Perfect Family: Perrones



My Perfect Family: CDKL5
Learning your new baby has a complex rare condition is life altering. Three Mums connect over their ...
My Perfect Family: CDKL5



Bulletproof: Hyrum
After suffering a traumatic brain injury in a road accident, Tairāwhiti local and ex-gang prospect H...
Bulletproof: Hyrum



My Perfect Family: Melody
Within just one year Melody entirely lost her vision, gave birth to her first child, and left her ho...
My Perfect Family: Melody



Bulletproof: Scott
Motocross enthusiast Scott MacDonald was just 14 when he broke his back on a bad jump. Now his 6-yea...
Bulletproof: Scott



My Perfect Family: Taonga
The Peita Boys keep their mum, Miranda’s, hands full. Taonga, the youngest, was born with the extra ...
My Perfect Family: Taonga



My Perfect Family: OCD
For two teenage sisters living with OCD, the world can often be an uncertain and scary place. In the...
My Perfect Family: OCD



My Perfect Family: The Cookie Project
Born with disabilities including Fetal Alcohol Syndrome, Ngā Hou now works as a baker at The Cookie ...
My Perfect Family: The Cookie Project



Being Me: Nikayla
Living with Cerebral Palsy, Nikayla Wood never imagined she’d skydive or ski. But with a new zest fo...
Being Me: Nikayla



Being Me: Cory
Punk-rock frontman Cory Newman is creating big waves with his band. The award-winning 17-year-old, w...
Being Me: Cory



Being Me: Kasem
13-year-old refugee Kasem lost his leg and much of his upper arm in a bomb attack in Syria, which al...
Being Me: Kasem



Being Me: Ivan
Profoundly blind acupuncturist and radio enthusiast, Ivan, is 72 years old. He’s never let his disab...
Being Me: Ivan



Being Me: Rufus
Rufus lives in Kaikoura with his parents, but wants to live independently like his siblings. On a ro...
Being Me: Rufus



My Perfect Family: The Priestleys
Four of the six Priestley family members live with Autism. Because they’re able to function at a hig...
My Perfect Family: The Priestleys



Being Me: Claudia
Claudia survived leukaemia, but the treatment that saved her life also left her with permanent disab...
Being Me: Claudia



My Perfect Family: Friedreich's Ataxia
Preparing for a 30th birthday is a big deal in the Boon family. Three out of five siblings live with...
My Perfect Family: Friedreich's Ataxia



Bulletproof: Anita
A life-changing quad bike accident at 18 left Anita Kendrick paraplegic. But with determination and ...
Bulletproof: Anita



Being Me: Ming Ming
Blind since birth, Ming Ming has never let that stop him being involved in everything from cricket t...
Being Me: Ming Ming



My Perfect Family: Sam and Jason
Sam lost her sight as a baby due to meningitis, and her husband Jason has limited vision due to a ge...
My Perfect Family: Sam and Jason



Bulletproof: Sophia Takes Life On
In 2016, a horse-riding accident left Sophia Malthus tetraplegic. But determined to turn her situati...
Bulletproof: Sophia Takes Life On



My Perfect Family: Jo & Leon
Young doctor Jo Scott’s career was on the rise when a brain haemorrhage changed her life. Seven year...
My Perfect Family: Jo & Leon



Changemakers: Umi Asaka
Umi Asaka and her mother have Brittle Bone Disease. After witnessing her mother’s battle against dis...
Changemakers: Umi Asaka



Bulletproof: Dinesh
Halfway through medical school, a car accident left Dinesh Palipana tetraplegic. Despite huge hurdle...
Bulletproof: Dinesh



My Perfect Family: Rasmussens
Born with a range of complex conditions, young Andre Rasmussen is not expected to live past the age ...
My Perfect Family: Rasmussens



In My Mind: Dr Tom
Doctor Tom’s mission is to be the ambulance at the top of the cliff. By sharing his personal journey...
In My Mind: Dr Tom



My Perfect Family: Little People
The 50th annual conference for Little People of New Zealand (LPNZ) is fast approaching, and 27-year-...
My Perfect Family: Little People



Bulletproof: Amanda
It’s been seven years since Amanda Lowry broke her neck while surfing. Accepting a new normal with t...
Bulletproof: Amanda



My Perfect Family: Bold As Brass
As New Zealanders living in Australia, Abbi and Morgan Brass received no government support when the...
My Perfect Family: Bold As Brass



Sir Robert Martin: A Human Rights Conversation
Sir Robert Martin's earliest memories are of appalling treatment in an institution. Now, he works wi...
Sir Robert Martin: A Human Rights Conversation



My Perfect Family: No Respite
Life during a pandemic is a challenge for all parents with kids at home. But for parents whose child...
My Perfect Family: No Respite



Diabetes: The Silent Killer
Type 2 diabetes is New Zealand’s silent killer. More than 250,000 Kiwis live with it; a further 100,...
Diabetes: The Silent Killer



My Perfect Family: Southland Lockdown
Awards Night is the highlight of the social calendar for a vulnerable workforce at Southland Disabil...
My Perfect Family: Southland Lockdown



Outbreak: 2020
In 2020 the rapid spread of Covid-19 has caused global alarm. We are being asked to unite as we figh...
Outbreak: 2020



2019 Attitude Awards Night Special
The 12th Annual Attitude Awards celebrate the achievements of people making a positive impact in the...
2019 Attitude Awards Night Special



Impact: Stroke
A medical stroke impacts the lives of more than 9000 New Zealanders every year. Here, we visit Middl...
Impact: Stroke



My Perfect Family: Southland
Southland Disability Enterprises employs over 80 people who live with a disability. For Mary-Ellen J...
My Perfect Family: Southland



SheLift: Part 2
Each year girls and women with various abilities and limb differences from all over the States meet ...
SheLift: Part 2



SheLift Part 1
Each year girls and women with various abilities and limb differences from all over the States meet ...
SheLift Part 1



Being Me: Rachael Leahcar
Australian singer-songwriter, Rachael Leahcar, was born with retinitis pigmentosa and at 25-years-ol...
Being Me: Rachael Leahcar



Being Me: Sarah
Though born with CHARGE syndrome, 22-year-old Sarah Dalton doesn’t let it define her. She’s an avid ...
Being Me: Sarah



Being Me: Erica
Born with a rare condition that affects her outward appearance, Erica Perry proves it’s what’s on th...
Being Me: Erica



My Perfect Family: The Fergusons Part 2
Last week we met the Fergusons, a family of five who communicate using NZSL. Here, we join the Fergu...
My Perfect Family: The Fergusons Part 2



My Perfect Family: The Fergusons Part 1
The Fergusons are an average family of five; they have fun, they fight, but mostly they get along. ...
My Perfect Family: The Fergusons Part 1



Bulletproof: Ashley
30-year-old Ashley Treseder dived off a pier in NSW and broke his neck. Now fresh out of rehab and i...
Bulletproof: Ashley



In My Mind: Teen Anxiety
What exactly is anxiety, and why is it more prevalent in teenagers now than in previous generations?...
In My Mind: Teen Anxiety



My Perfect Family: Hunter
Hunter McGregor is a passionate gamer, a design school graduate, and he runs a B&B with his mum, Roi...
My Perfect Family: Hunter



Tracking Towards Tokyo
Townsville, Australia is home to the 2019 Oceania Champs. This is the last chance for seven Kiwi par...
Tracking Towards Tokyo



Being Me: Barney Looks Back
Barney lost his hands and legs from meningitis as a baby. At 25, he looks back on the life lessons ...
Being Me: Barney Looks Back



Being Me: Cody Steps Up
Tetraplegia hasn’t stopped wheelchair rugby star Cody Everson from stepping up to adulthood. He owns...
Being Me: Cody Steps Up



Being Me: Jack
At 18, Jack Brown made a decision that would put him in a wheelchair for life. Facing his new realit...
Being Me: Jack



My Perfect Family: Kat and Ella
Kat Yearbury is a mother to two-year-old Frankie and six-year-old Ella, who has Cerebral Palsy and E...
My Perfect Family: Kat and Ella



Finding a Cure for Motor Neurone Disease
MND Registry Curator, Kerry Walker dreams that one day people diagnosed with motor neurone disease a...
Finding a Cure for Motor Neurone Disease



Being Me: Samarra
Samarra Wright grew up fearing she’d get MND - it killed her mother and many of her wider family. H...
Being Me: Samarra



Bulletproof: Jezza
A canyoning accident in Switzerland left Jezza Williams a tetraplegic. An adventurer at heart, just ...
Bulletproof: Jezza



In My Mind: Midlife Crisis
Middle-aged males often top mental health statistics. Here, Gen Xers and former comedians Willy de W...
In My Mind: Midlife Crisis



In My Mind: Breaking Point
To endure a breakdown at the pinnacle of your sporting career is tough. Former NRL star Paul Whatuir...
In My Mind: Breaking Point



My Perfect Family: Martine
Blind since birth, Martine Able-Williamson is now a global leader in the blind community. In this i...
My Perfect Family: Martine



Being Me: Joshua
Joshua Sade-Inia is a burns survivor. The scars, which cover almost half his body represent his ins...
Being Me: Joshua



Bulletproof: Tim
Tim Young was on the trip of a lifetime in Canada when a snowboarding accident left him a tetraplegi...
Bulletproof: Tim



My Perfect Family: Fragile X
To discover you’re the carrier of the genetic condition Fragile X only after your children are born ...
My Perfect Family: Fragile X



My Perfect Family: Candle Dad
Raising four children alone is a challenge - more so, when two have Down Syndrome. Tony Sykes rose t...
My Perfect Family: Candle Dad



Being Me: William
Diagnosed with autism spectrum disorder and anxiety as a child, 25-year-old William Luskie is now an...
Being Me: William



Being Me: Rachel Māia
Rachel Māia lives in constant pain, considering amputating her leg to reach new heights.
Being Me: Rachel Māia



Accessibility Matters: Grace Stratton
Accessibility Matters: Grace Stratton



Accessibility Matters Clive Lansink
Accessibility Matters Clive Lansink



Attitude Awards 2019: Preview
The 12th Annual Attitude Awards celebrate the achievements of people making a positive impact in the...
Attitude Awards 2019: Preview



Accessibility Matters: Tim Young
Accessibility Matters: Tim Young



NZSL Feeling Good Performance - Attitude Awards 2021
Feeling Good performed in New Zealand Sign Language by Anushka Singh, Ysabel Mercado, and Martina Me...
NZSL Feeling Good Performance - Attitude Awards 2021



NZSL Feeling Good - Attitude Awards 2021
Feeling Good performed in New Zealand Sign Language by Anushka Singh, Ysabel Mercado, and Martina Me...
NZSL Feeling Good - Attitude Awards 2021



2021 Attitude Awards Preview
A glimpse at the finalists in the build up to the 2021 Attitude Awards. We showcase outstanding achi...
2021 Attitude Awards Preview



Cool As Ice
From Wānaka to Beijing, we follow Paralympic veterans Corey Peters and Adam Hall, as well as debutan...
Cool As Ice



Cool As Ice
From Wānaka to Beijing, we follow Paralympic veterans Corey Peters and Adam Hall, as well as debutan...
Cool As Ice