A disability advocacy group is speaking to the government this week after a health and disability review left its members angry.
The government released the Simpson Report, a review of the health and disability system led by Heather Simpson, last week. The review recommended the government reduce the number of district health boards, create a Māori health authority and create a new overarching Crown entity called Health NZ.
Disabled Persons' Assembly president Gerri Pomeroy told RNZ the report did not reflect the day-to-day realities facing disabled people, and the opportunity to transform disability support was "conspicuous in its absence".
"We're quite disappointed to be honest and the main flaw we see is that it's medicalising the way disabled people live their lives and we're really calling for a separate organisation to be set up that is about disabled people for disabled people."
The disabled community did not believe it went far enough. Pomeroy said there was no disabled person on the advisory group.
"We did ask for a disabled person to be involved at some point, to be on the panel or a disabled people or whānau advisory panel, but our requests weren't acted upon," Pomeroy said.
Families with disabled children were wondering if the government's actions were good enough too.
Eamon Marshall of Napier has tuberous sclerosis, cerebral palsy, severe epilepsy, visual impairment and intellectual disability.
His father Glenn said although Eamon was almost 18, he still "needs his nappies changed, he needs to be fed, he needs to be showered, he is totally reliant on care, he can do nothing by himself".
In Napier, after reading the review, Glenn Marshall thought there would be little change.
"At the moment you've got this bizarre system where the Ministry of Health on a centralised Wellington level dishes out the money to each DHB who then dishes out the money to the provider under a very broad, loose contract but no one actually oversees that money to ensure that the services that are being funded whether those people are actually getting the services to the appropriate level that they should be getting it."
Marshall still hoped the disabled community could be treated more fairly in any system shake up.
The Ministry of Health directed comment to Associate Health Minister Jenny Salesa who said were "still some barriers" facing disabled people.
"Understanding those issues and providing support where we can is an ongoing process," she said.
"The government is currently giving consideration to the recommendations of the Health and Disability System Review and to other issues that have been raised more broadly across the sector. Decisions on those will be made in due course."