Advocates for New Zealand's disabled community are concerned their members are being forgotten in the nation's Covid-19 vaccine rollout, one saying she fears it's too late to fix.
And despite being in the rollout's third priority group, the Ministry of Health only collects vaccination records for 3 per cent of the estimated 1.22 million disabled Kiwis.
The 2013 New Zealand Disability Survey estimated 24 per cent of Kiwis were disabled - more than 1.22 million New Zealanders based on current population figures.
However, the Ministry of Health could only provide vaccination data for 35,000 disabled people - those received Disability Support Services (DSS) funding from the ministry or received ACC funding for longer than six months.
Of this group, about 30 per cent had received a first dose and almost 16 per cent were fully vaccinated as at August 1. Disabled people were in group three of the vaccine rollout, which opened in May.
The Disabled Persons Assembly is a voice of thousands of New Zealanders with a wide range of impairments.
Chief executive Prudence Walker said highly varied vaccination experiences had damaged the disabled community's trust in the rollout and the health system.
While she accepted there was still time to adapt vaccination centres to disabled people's needs, Walker was sceptical whether the necessary changes would be made.
"There are various initiatives happening insofar as communications, but I'm not sure if there's time to undo anything that's been done."
She identified a range of factors which needed addressing, including communication, vaccination centre accessibility and environments, and information on how the vaccine might interact with other health conditions.
Ministry of Health Covid-19 vaccination and immunisation programme equity group manager Jason Moses said initiatives to target disabled people had been launched across the country.
He cited Capital and Coast DHB's 20 accessible events catering for a range of impairments, Auckland DHB's outreach programme engaging care providers and South Canterbury DHB extending appointment times and conducting in-home vaccinations.
Walker, who lives with a number of impairments after multiple brain injuries, had received one jab.
She described the experience as similar to a production line with no real consideration for her needs, but acknowledged glowing reports from others.
"It seems to really vary, region to region."
Similar assessments of the rollout have been commonplace, made evident by the varied success of different rollout plans across district health boards.
As an adviser to the Ministry of Health since lockdown last year, Walker said she was disappointed even she'd been unable to prompt much action.
"I think there's confusion and frustration all round, but the result is disabled people don't get equitable approaches and may not get equitable outcomes, but we might not even know that because we don't know if we are collecting the data on that."
CCS Disability Action has about 6000 members but also operates the mobility parking permit scheme, which reaches about 150,000 Kiwis.
National disability leadership coordinator Debbie Ward said she was disheartened by the level of consideration given for people with disabilities, especially after the lessons learned during lockdown.
"Once again, it feels like it's another afterthought.
"I know a lot of work is happening behind the scenes, but I don't know if that's reaching the grassroots level."
Ward, also physically impaired, felt people with disabilities were too often left with the responsibility to ensure their requirements were met, while navigating the vaccination process.
"It should just be a given that accessibility needs are considered right from the get-go like Pasifika and Māori needs are."
In Auckland - believed to have the country's largest concentration of disabled Kiwis - some vaccination centres could provide low sensory environments, but only on request.
At the country's first mass vaccination event in South Auckland on the weekend, the targeted average duration of a vaccination was 90 seconds - enabling 15,800 people to get the jab in three days.
A Northern Region Health Co-ordination Centre spokesperson said whānau rooms, where Aucklanders could be vaccinated away from other people or with a support person present, could be requested by calling 0800 28 29 26.
IHC Group provider IDEA Services supports people with intellectual disabilities. Nursing director Prudence Lennox said Auckland DHB outreach staff had been very supportive in vaccinating about 400 people in their community.
"[The DHB staff] have an understanding of the people we support and they're going about it in the right way to get as many people in this vulnerable sector vaccinated."
Autism New Zealand chief executive Dane Dougan said he advocated for a national rollout plan earlier this year, hoping it would avoid variance across DHBs.
Autism New Zealand chief executive Dane Dougan. Photo / Supplied
While he'd been impressed by the Ministry of Health's consultation with Autism NZ, Dougan said the disconnect he saw between the ministry and DHBs had hindered progress.
"For our community, if you over-promise and under-deliver, getting that trust back can be really difficult."
Dougan was instrumental in organising Wellington's autism-friendly clinic, which would be open on August 14 and 15.
Its design ensured lighting, sound, and visual elements would be suitable, and would allow for much longer vaccination appointments - with an aim to jab 100 people across two days.
Dougan said there were plans to have a similar facility in Auckland and hoped it would be operational in September.
