Unified Advocacy Groups Amplify Consumer Voices In Disability Support Services Review

In a significant demonstration of unity, leading disability and advocacy organisations have come together to amplify the voices of consumers in the review of New Zealand's Disability Support Services (DSS). This joint submission, sent to the review panel chaired by Sir Maarten Wevers, and including Leanne Spice, and Reverend Murray Edridge, speaks up about the urgent and critical need for inclusive and equitable disability support across the nation. The review has been prompted by budget concerns at Whaikaha for currently recognised conditions receiving these services. However, it is essential for the government and the review panel to acknowledge the broader disability landscape in New Zealand as there is far more disability that goes unrecognised and unsupported. Thousands of individuals who should be entitled to services are not receiving the necessary support.

The coalition of organisations—including ADHD New Zealand, ANZMES, Autism New Zealand, Ehlers Danlos Syndromes New Zealand, Epilepsy New Zealand, Foetal Anti-Convulsant Syndrome New Zealand, FASD-CAN Incorporated Aotearoa, Rare Disorders NZ, Stroke Foundation of New Zealand, and Tourettes Association of New Zealand—represents a diverse range of conditions that currently fall through the cracks of the existing DSS framework. This joint effort arises from the discontinuation of the Whaikaha DSS Eligibility Review Advisory Group, which previously served as a vital channel for direct consumer feedback from these organisations.

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The submission brings to light several issues experienced by this coalition that urgently need to be addressed to create a fairer and more inclusive DSS. The termination of the Advisory Group has left a void in consumer representation. Incorporating consumer voices in the review process is essential to ensure that support services meet consumer needs, and are both equitable and inclusive. Current DSS criteria exclude many conditions that meet the New Zealand government and the United Nations definition as disabilities. This exclusion results in woefully inadequate support due to insufficient identification, coding, tracking, and funding.

Other key issues highlighted are significant regional disparities in service access due to the "postcode lottery" effect, necessitating integrated support systems across all regions. Systematic barriers, such as the need for high health literacy and effective communication with health professionals, disproportionately affect those with cognitive impairments or complex needs. The current system's sole reliance on formal diagnoses delays support, creating inequities, particularly between paediatric and adult services. Fragmentation across government agencies results in inconsistent care and additional stress for individuals with disabilities, emphasising the need for better integration. Existing funding mechanisms are inadequate to meet the growing needs, requiring adjustments tied to inflation and increased government investment. Early identification and intervention strategies are crucial for preventing the progression of disabilities and improving long-term outcomes.

The submission recommends revising the DSS eligibility criteria to include a wider range of conditions recognised by the UN and New Zealand definitions of disability, ensuring these are properly identified, coded and tracked. It calls for improved regional integration to eliminate the "postcode lottery" and silo funding effect, ensuring customer-focused, integrated, and equitable access to services across all regions.

The application and assessment processes should be streamlined to be more accessible, particularly for those with cognitive impairments or severe fatigue. Enhancing the NASC processes is essential to reduce the administrative burden on individuals and create a more compassionate support system. Increased funding for DSS is advocated to support all eligible individuals, emphasising the long-term benefits and cost savings of early and consistent support across the life span. The development of integrated care pathways for early intervention services and the implementation of a centralised system for sharing information across agencies are crucial for cohesive care. Additionally, creating a "catch net" for individuals who fall through the cracks of the current system will ensure they receive necessary reassessment and support.

By considering these critical issues and implementing necessary changes in DSS criteria, Aotearoa New Zealand can move towards a more supportive and fair disability support landscape.

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The organisations involved in this submission represent significant segments of the New Zealand population affected by various disabilities:

ADHD New Zealand: ADHD New Zealand estimates that around 280,000 people in New Zealand have ADHD, affecting approximately 2.4% of children aged 2-14 years. It is underdiagnosed in adults due to diagnostic criteria initially developed for children.

ANZMES (The Associated New Zealand Myalgic Encephalomyelitis Society) and Complex Chronic Illness Support: There are approximately 25,000 - 45,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and potentially over 400,000 when considering those who meet the criteria of long COVID induced ME/CFS.

Autism New Zealand: Approximately 93,000 people in New Zealand are on the autism spectrum, translating to about 1 in 54 people.

Ehlers-Danlos Syndromes New Zealand: There is likely to be 1:500 people with Ehlers-Danlos Syndrome however, they are currently rated 1:5000 due to lack of coding and tracking, leading to delays and misdiagnoses.

Epilepsy New Zealand: Epilepsy is a condition that affects 1 in 100 people, approximately 50,000 New Zealanders. 70% of people living with epilepsy gain good control on anti seizure medication however, 30% will not get control and this has long lasting effects.

FACSNZ (Foetal Anti-Convulsant Syndrome New Zealand): The exact prevalence is unknown due to the complexity of diagnosis and underreporting. However, the condition is recognised to be a significant risk for children exposed to anti-seizure medicines during pregnancy.

FASD-CAN Incorporated Aotearoa (Fetal Alcohol Spectrum Disorder - Care Action Network): Te Whatu Ora estimates that between 3 - 5% of people born each year may be affected by the effects of prenatal alcohol exposure each year. This implies that around 1800 - 3000 babies, approximately 8 babies per day, may be born annually with FASD.

Rare Disorders NZ: Approximately 300,000 New Zealanders, 6% of the population, live with a rare disorder, with half of these individuals being children. Rare disorders, which have a prevalence of 1 in 2,000, encompass over 7,000 distinct conditions, each with varying levels of support needs.

Stroke Foundation of New Zealand: An estimated 89,000 are currently living with the effects of their stroke. Over 10,000 strokes occur each year in New Zealand, making it the second-leading cause of death and a leading cause of adult disability.

Tourettes Association of New Zealand (TANZ): Tourette Syndrome affects approximately 1 in 100 school-aged children in New Zealand. Up to 85% of individuals with this disability experience co occurring conditions such as ADHD, OCD, anxiety, and mood disorders.

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