The New Zealand Down syndrome community is urging the Government to ignore the recommendations in the recent Health and Disability Sector Review.

“New Zealand has made terrific progress to enhance the quality of life for people with Down syndrome and other disabilities and these recommendations which place disability under the health umbrella would take us back generations where disability was seen as a disease,” says Kim Porthouse, president of the New Zealand Down syndrome Association (NZDSA).

The NZDSA has joined the chorus of outraged voices from inside and outside the disability sector who are concerned about the key recommendation to make disability support the responsibility of district health boards.

“Disability cannot be treated as a health issue, but as a condition that affects every part of someone’s life,” says Porthouse.

NZDSA President Kim Porthouse

“Good health is only one part of creating well-being, but so are education, employment, financial independence, strong community and getting access to every aspect of society. That is no different from any other person.”

To achieve a meaningful life, disabled people require support from multiple agencies, including the ministries of Health, Education and Social Development.

“The review makes all the right noises, but if the responsibility is given to DHBs, we fear the delivery will be too fragmented, inconsistent and too health focused.”

Porthouse points out that the Government has done great work with the sector on a System Transformation to give people with disabilities more decision-making and create better lives, “so these recommendations seem a backwards step”.

“The biggest failing is that people with disabilities were not consulted at all, and that is very apparent in the report.”

Down syndrome self-advocate Caroline Quick says disabled people have been excludes from this review.

Caroline Quick is member of the NZDSA’s self-advocacy leadership group STRIVE and is concerned that the review is not available in an easy read format.

“This means that many disabled people will not be able to read what impact the report will have on their lives, will not be able to respond to the proposals and are excluded from participation,“ says Quick.

Porthouse says that the review recognises the importance of  Māori having their own Authority, but fails to pay the same respect to people with disabilities who make up 24% of the population.

“We strongly urge the Government to set up a separate Disability Authority that represents all sections of the disability sector.”

She says a Disability Authority would be a natural progression of the System Transformation pilot program which, with the inclusion of people with disabilities, their whānau and service providers, has already created high-level policy design and implementation.

“That program shows that strong collaboration between the disability sector and Government has enabled the implementation of the Enabling Good Lives principles for thousands of New Zealand’s with a disability,” says Porthouse.

“In 2020 people with disabilities are dynamic and want to create independent and meaningful lives and be involved in making the decisions that impact their lives.

“However, by burying disability services within DHBs without adequate inclusion of disabled people on governing boards, this review instead upholds the archaic view of disability being an illness and the disabled being incapable,” says Porthouse.

“This will leave the disabled wilting in unfulfilled lives, unable to reach their potential. I’m sure this is not where a progressive New Zealand wants to be.”