Unified voices for Disability Support Services

On 17 July 2024, a press release was sent out which represented the unified voices of 11 organisations who support people with disabilities in Aotearoa who are currently not eligible for Disability Support Services (DSS). FASD-CAN was one of those organisations.

A submission document was sent to the government-appointed panel which is currently reviewing eligibility for DSS for 'a diverse range of conditions that currently fall through the cracks of the existing DSS framework' – this includes many people with FASD who, unless they have a proven intellectual disability, are not eligible. 

The submission, entitled 'Critical Issues and Challenges - Review of Disability Support Services', was sent to the DSS review panel (Sir Maarten Wever, Leanne Spice, and Reverend Murray Edridge), and copied to Hon. Louise Upston, Minister for Disability Issues, Paula Tesoriero, Chief Executive Whaikaha, Prudence Walker, Disability Rights Commissioner and others. 

• Read the press release here.

• Read the submission report here.

• Read our report which resulted from a survey of our members in 2023 about Disability Support Services and the enormous effects that having support – or not having it – has on the lives of our whānau. 


The cover letter sent with the submission report is below.

Dear Sir Maarten Wevers, Reverend Murray Edridge, and Leanne Spice

Subject: Submission on Review of Disability Support Services

We understand that you are conducting a review of the Disability Support Services (DSS) in New Zealand and we write to submit our report addressing the critical issues and challenges affecting DSS and access by the patient/consumer groups we represent. This submission represents the collective voice of ADHD New Zealand, ANZMES, Autism New Zealand, Carers Alliance, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, FACS-NZ, FASD-CAN Inc, Rare Disorders NZ, Stroke Foundation of New Zealand, and the Tourettes Association of New Zealand.

Our organisations collectively serve a significant portion of New Zealand's disabled population. Our collective experience and the voices of the individuals we represent have highlighted several areas in need of urgent attention and reform. The discontinuation of the Whaikaha DSSEligibility Review Advisory Group has left a void in consumer representation, and this joint submission aims to address this gap.

The submission details the following key issues:

  • The need for greater consumer inclusion in the review process.
  • Inadequacies in the current DSS eligibility criteria.
  • The "postcode lottery" effect and regional disparities in service provision.
  • Systematic barriers requiring high health literacy for service access.
  • Inequities in support based on presenting needs versus formal diagnosis.
  • Lack of integration across agencies leading to fragmented care.
  • Insufficient funding mechanisms.
  • The importance of early intervention strategies.

We have also outlined actionable recommendations to address these issues, including revising eligibility criteria, improving regional integration, simplifying application processes, enhancing NASC processes, increasing funding, implementing early intervention strategies, creating a centralised information-sharing system, and establishing a "catch net" for those who fall through the cracks.

We trust that this submission will provide valuable insights and assist in guiding the review process towards creating a more equitable, inclusive, and effective system of disability support services in Aotearoa New Zealand.

We appreciate your consideration of these critical improvements in the DSS framework and look forward to your positive response. Please feel free to contact us on [email protected]  on behalf of our collective for further discussion or to arrange a meeting.

Yours sincerely,

Fiona Charlton
ANZMES President on behalf of:

ADHD New Zealand

ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) Incorporated

Autism New Zealand

Carers Alliance

Ehlers-Danlos Syndromes New Zealand

Epilepsy New Zealand

FACS-NZ (Foetal Anti-Convulsant Syndrome New Zealand)

FASD-CAN Incorporated (Aotearoa Fetal Alcohol Spectrum Disorder - Care Action Network)

Rare Disorders NZ

Stroke Foundation of New Zealand

Tourettes Association of New Zealand