Submission on Review of Disability Support Services

Rare Disorders NZ along with ADHD New Zealand, ANZMES, Autism New Zealand, Carers Alliance, Ehlers-Danlos Syndromes New Zealand, Epilepsy New Zealand, FACS-NZ, FASD-CAN Inc, Stroke Foundation of New Zealand, and the Tourettes Association of New Zealand have jointly submitted a report addressing the critical issues and challenges affecting Disability Support Services (DSS) and access by the patient/consumer groups we represent. The submission is in response to a review of the DSS in 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 DSS Eligibility 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.

Read the full report here.