Paula Tesoriero, Disabilities Commissioner speech at the FASD-Can HUI on Saturday 7th September

We must uphold the rights of people with Fetal Alcohol Spectrum Disorder (FASD)

September 9, 2019

E ngā mana, e ngā reo, raurangatira mā

Tena koutou katoa

Ko Paula Tesoriero ahau

Ko au te Kaihautu Tika Hau

Atanga mō te Kāhui Tika Tangata ki Aotearoa

Nō reira, tēnā koutou, tēnā koutou, tēnā koutou katoa.

Mauri tangata, Mauri ora

Thank you for the opportunity to speak to you today as Disability Rights Commissioner.

My role under the Human Rights Act is to protect and promote the rights of disabled New Zealanders.  My role is independent from the Government. Among other aspects to the role, I am required to hold government to account for ensuring human rights obligations are advanced.

My own journey to this role was predominantly through the lens of a physical disability.  I have a prosthetic leg on one side, and my lower leg on the other side is missing some functionality below the knee.

So one of the key areas I needed to learn about fast in this role was neuro-disability. In terms of FASD, Claire, Valerie and Christine were instrumental in helping me understand this more.  They are great champions of yours and, having been at various meetings with Ministers with these 3 amazing ladies, I can confirm they don’t hold back in advocating for change in this area.

I am often asked to attend meetings with Ministers in support of different groups, and I simply can’t attend them all and nor would it be appropriate to. But I do attend meetings on FASD in support of the network because I firmly believe there is an urgency to address the lack of support.

Thank you for letting me be here today. I know it can be painful repeating stories, but your stories are powerful so please share them with me- it helps me do my job better.

I will be wearing my red shoes/lapel badge on Monday in support of the September Red Shoes Rock campaign to raise awareness of FASD.

Not only does the public need to be more aware of the barriers people affected by FASD face, but so do the policymakers. FASD must be recognised as a disability so that people, like many of you in this room, can access the supports and services needed from the government and in the community to build strategies that help them fully participate.

There is no debate in international or domestic law: FASD is a disability. FASD falls into both the definition of disability in the Disability Convention and the New Zealand Human Rights Act.

If it is not clearly understood that FASD is a disability, then individuals and their families cannot access the supports and services they need. I have heard many stories of people being turned down for things like respite care because they do not meet the Ministry of Health eligibility criteria. I’m sure you have your own stories.

My hope and my efforts are for a society that removes the barriers, one that values and includes disabled people and their whānau.

The Ministry of Health suggests that around 1800 babies with FASD are born each year but this is an estimate, and possibly an under-estimate. To properly identify, plan and budget around the size of the population affected by FASD within the New Zealand context, research into its prevalence here is urgently needed.

Myself and Children’s Commissioner Andrew Becroft continue to raise the following issues with Government Ministers.

  1. That the definition of ‘disability’ needs to be widened to include FASD.  The “below 70 IQ” definition excludes many with FASD who need significant help.
  2. The need for respite care, in particular for families struggling with children and young people with FASD.
  3. The need for better collaborative work across government departments, including Health, Education, Police and Justice, to address the FASD issue and to avoid parallel work streams. People with FASD and families must be part of this collaboration. This is not an ‘us and them’ situation but rather a ‘us working alongside them’ proposal in order to get some positive outcomes for families.
  4. The continuing issue of a lack of a FASD prevalence study. We suspect that the 3-5% prevalence rate established in Canada is probably “under counting” the New Zealand position. Given 60,000 live births annually, that is potentially (a minimum) of 3,000 new births per year with FASD.
  5. What happened for autism, some years ago, was a game changer (for autism services), and we are looking for exactly the same with FASD.  Rather than delay supports for FASD, this Government could proceed on both fronts at the same time: progress with FASD responses and a holistic, joined up coordinated response to all neuro-developmental difficulties.

We also need to ensure that there is a cross-agency response to FASD in New Zealand – what data is collected, who has access to this data, how is it used. This means that all agencies need to be using definitions that are consistent with the Disability Convention for the purposes of data collection.

Accurate diagnosis of FASD requires a specialised, multidisciplinary assessment.  New Zealand has very few specialist diagnostic centres and little research and consequently FASD remains significantly under-recognised and the needs of the affected individual and their families unaddressed.

Article 1 of the Disability Convention defines a disabled person as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.

For disabled people, it is the barriers they face that mean they cannot fully participate in society on an equal basis – not a medical classification. This is true of people with FASD.

How we define or discuss it FASD has a profound impact on children, whānau and society. We need to provide individuals and families with the supports at the right time and in the right way and the next step in the MOH FASD Action Plan must allow for this.

Services and supports need to evolve as young people age, and to respond to individual circumstances. Studies are showing that people with neurodiversity including FASD, are disproportionately represented in Justice and Police stats, and this is particularly true of the stats for young people. It’s good to see initiatives such as the Talking Troubles project to provide communication systems for young people facing communication barriers in the Justice system.

Failure to provide adequate learning support and specialist services for children and young people with communication difficulties can result in lifelong disadvantage. A well as higher chance of being caught up in the Justice system, this can include barriers to entering the workforce and obtaining well paid employment, and lead to disproportionately high rates of unemployment.

I’ve been talking with the Police about including training for recruits in communicating more effectively with disabled people and challenging their own assumptions about how people present to them.

A human rights approach stands in clear contrast to the traditional “medical approach” to disability issues, which tends to describe an individual’s differences as deficits. Instead, a human rights approach celebrates diversity, emphasises individual strengths and serves to highlight systemic shortcomings in accommodating diversity amongst individuals.

Working in a human rights-based way means ensuring that children with speech, language, communication needs can exercise agency in their own lives, including a focus on listening to children’s voices, collaborating with teachers and working in partnership with families and whānau and a capabilities-approach to building communications skills.

So my hope is that people will take a moment in September to learn something new about FASD and so help to create a circle of care around those living with this disability.

With this increased understanding at societal level, we can help improve lives and outcomes.

I will continue being a champion and work alongside you for change.