Paula Tesoriero: Transformative change needed for disabled

Elinor Neha is one of many who make up the one in four New Zealanders with disabilities in Aotearoa New Zealand. Photo / Michael Cunningham, File

OPINION

Disabled people's lives will be profoundly affected by the Government's recent announcement about a new Ministry for Disabled People. I welcome these announcements as a potential platform for positive change.

Change is certainly needed to create genuine transformation for disabled people in Aotearoa New Zealand. Transformation will rest on ensuring true partnership with Māori and leadership by disabled people and tāngata whaikaha Māori.

The review of the Health and Disability system, completed in 2020, recognised the system didn't serve disabled people well. However, many in the disability community, including myself, were disappointed the suggested response was to keep disability in a medical framework. So, I was pleased further work was done, involving disabled people, to develop proposals.

People often tell me I should celebrate the small wins. Disabled people deserve more than small wins over decades of advocacy. We need big wins, and these announcements send the right signal.

It's a beginning – not an end.

Paula Tesoriero. Photo / Supplied

Change is critical because Covid has exacerbated inequities and challenges for disabled people. So, while it may have been tempting to delay the announcement, I appreciate the government pushing forward.

Let's unpack the changes: Firstly, a new Ministry for Disabled People will be established by 1 July 2022. The big positives are the ministry will be an agency with a CE reporting to the head of the public service in the same way other government agencies do.

This gives greater visibility for disability rights across government at a senior level.

It will have two main functions: delivering support services that currently sit with the Ministry of Health and developing policy.

For too long issues for disabled people have been siloed into different agencies. I'm hoping the new agency can develop policy in a more holistic way that reduces the challenges and barriers faced by disabled people.

The policy function is important. True transformation for disabled people will only come when big issues are tackled like addressing poverty, the costs of disability, affordable and accessible housing, and inequities in support between ACC and the Ministry of Health. Not to mention the transformation needed in many other areas like employment, housing and education.

Moving Disability Support Services (DSS) out of the Ministry of Health (long called for by the disability community) means disabled peoples' lives, and their right to support for living life with equal opportunity, will be viewed more holistically.

But here's what I'll be watching – there are more than a million disabled people in NZ. DSS provides services to just over 40,000 people, but many who need DSS miss out, including those with Fetal Alcohol Spectrum Disorder, Attention Deficit Spectrum Disorder, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and some rare disorders. Only a relatively small number of people with autism receive DSS.

Criteria for accessing support must be based on what people need for a good life. I'll keep advocating for this to happen, and to make sure existing DSS services are not disrupted during the transition. It's also vital the new agency is led by disabled people and has disabled people as employees - it will fail without this.

Having a new ministry doesn't mean other government agencies can abrogate their responsibilities towards disabled people. So, I'll be watching closely to see disabled people's rights remain on all government agency agendas, and that broader health reforms properly address health inequities for disabled people.

Poor access and outcomes must not be tolerated. This is even more important as we move to potentially living with Covid and less protective restrictive Covid measures.

The national rollout of Enabling Good Lives (EGL) also announced, requires this integrated approach from government, so people get early equal access to all services needed for a good life. Existing trials of this approach demonstrated real benefits for disabled people including more autonomy, social connectedness and improved wellbeing.

I'm hoping the new ministry can achieve all this, if not, we may need an entity with even greater independence.

New accessibility legislation was the second major announcement. Disabled people face barriers to accessing things many take for granted; public transport, buildings, shops, parks and playgrounds, information and much more. It's good to see a recognition this needs to change.

The new framework proposed is a good first step consistent with the principle of "progressive realisation" under the Convention on the Rights of Persons with Disabilities. It provides an approach to identifying, preventing, and removing barriers to participation for disabled people and tāngata whaikaha Māori. I'd like to see the proposed framework go further.

Some alternate comprehensive models have been developed by the Access Alliance, and in the report Making New Zealand Accessible: Design for Effective Accessibility Legislation. I encourage people to look at these and take part in the select committee process to make the best accessibility law possible.

We must not be timid. Improving accessibility for disabled people has benefits for everyone.

When the announcement was made the saddest moment for me was when a disabled friend told me he cried for the people who'd died while fighting for these changes for decades.

I'm saddened disability transformation has taken so long we've lost members of our community along the way.

Let's make sure this important and welcome platform for change results in true transformation.

• Paula Tesoriero is New Zealand's Disability Rights Commissioner.