People With Fetal Alcohol Spectrum Disorder (FASD) Dismayed At Government’s Response To The Rights Of Disabled People

The organisation supporting people with Fetal Alcohol Spectrum Disorder (FASD) and their families is shocked at the government’s response to the recommendations of the review on the rights of disabled people in Aotearoa announced yesterday.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) 2022 review made 60 specific recommendations for New Zealand’s implementation of the convention, which it deemed essential to improve life outcomes of people with disabilities. The previous government had agreed to progress 51 of the recommendations, some with modifications, including one related to disability support. Yesterday the government announced that only 30 of the recommendations will be progressed, and others put on pause. Two of these paused recommendations were essential to improve the lives of those living with FASD in Aotearoa.

This government’s response to the UNCRPD’s recommendation to “Expedite the national rollout of the Enabling Good Lives [EGL] programme and ensure that all persons with disabilities, including people with FASD, are eligible,” was to halt progress on this recommendation until work on the three stages of the Independent Review have been completed.

People living with FASD are currently unable to access Disability Support Services (DSS) unless they have a co-existing intellectual disability, which means less than twenty per cent of those with FASD can access support. Advocates for those living with this disability, including the previous Children’s Commissioner and the Disability Commissioner, believe the current lack of support for those with FASD in Aotearoa is an abuse of human rights and have called for eligibility for support to be made available for all those living with FASD.

Advertisement - scroll to continue reading

FASD is the most common neurodevelopmental disability, affecting between 1 in 20 and 1 in 30 people in Aotearoa. It manifests as impairments of multiple brain functions including processing, reasoning and emotional regulation. It can result in life-long difficulties with day-to-day living and an increased risk of addiction, involvement in crime, homelessness and social difficulties.

Research shows that early intervention, such as would be provided by the roll-out of EGL to those with FASD, or enabling those impacted by FASD to be eligible for existing DSS, would improve life outcomes for these individuals and their families and provide a significant social investment with benefits to society. An NZIER report last year found that FASD is responsible for over half of the cost of all alcohol harm in Aotearoa NZ – $4.8 billion per annum – this figure would be significantly reduced by early assessment and intervention.

Dr Leigh Henderson, the Chair of FASD-CAN, the lead organisation supporting people with FASD, is concerned that the rights and needs of people with Fetal Alcohol Spectrum Disorder (FASD) have again been ignored. She says, “The NZ Government has accepted that FASD is a disability but has yet to make available access to the Disability Support Services funding to people with FASD. This breaches their human and disability rights under the United Nations’ conventions, and perpetuates the inequities in our society, not only against people with disability, but between disabilities.”

“FASD is a very common neurodisability, yet those with this lifelong condition struggle to get their voices, their needs and their rights heard across the disability sector and by policy makers,” said Dr Henderson.

FASD-CAN is supporting those with FASD to develop their voices as they are not currently represented by the disabled community. This relates partly to the stigma of having FASD. [Name withheld] says, “In the past I have not told people I have FASD because I didn’t want them to treat me differently.”

“FASD-CAN is at the frontline of supporting people with FASD and strengthening those communities, agencies and professionals working with them. However, the scale of this problem, and the positive benefits to individuals and society from providing support, is not being recognised,” said Stephanie James-Sadler, CEO of FASD-CAN. “

The cost to whānau, communities and the Government is much greater if the needs and rights of people with FASD are not addressed. The need for support for families is urgent, as we showed in a survey of families presented to Whaikaha last year. This indefinite pause in the implementation of EGL across the motu/country and the ongoing failure by successive governments to meet the needs of people with FASD will perpetuate the harm being done to those living with FASD in Aotearoa.”

What is FASD?

FASD is a life-long condition affecting the functioning of at least 3 parts of the brain. It is often hidden, is poorly understood and negatively stigmatised. In Aotearoa New Zealand, FASD affects between 3 - 5% of the population, and approximately 60,000 people under 18 years old. It is estimated that there are between 1,800 and 3,000 babies born each year with FASD. FASD can impact people across a range of areas – education, substance misuses and addiction, mental health, employment, justice and ability to live independently.

Information on FASD-CAN

FASD-CAN Inc (Fetal Alcohol Spectrum Disorder – Care Action Network) is the lead NGO in Aotearoa New Zealand addressing FASD, supporting affected individuals and their families and carers and providing resources, training and advice to clinicians, frontline professionals and Government agencies including Police, Justice, Oranga Tamariki, social workers and care institutions, teachers and schools, communities, public inquiries, and people with FASD themselves.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRDP)

The UNCRPD is an international human rights treaty which sets out the fundamental rights of people with disability. Its aim is to ensure people with a disability enjoy the same human rights and opportunities as anyone else. The Convention also puts an obligation on governments to promote, protect, and ensure these human rights. In 2008 New Zealand signed the UNCRPD without making any reservations to the Convention.

In 2023 Aotearoa's compliance with the UNCRDP was reviewed. Sixty recommendations were made, including a number specific to those living with FASD in Aotearoa – and the Minister for Disability Issues yesterday announced which ones will be progressed and which will be paused.

Eligibility to Disability Support

FASD-CAN and others have advocated for many years for the right to disability support for those with FASD. Disability Support Services are currently only available if there is an intellectual disability, where the IQ is below 70 ( approximately 20% of those with FASD). Other people with FASD who have an IQ within the normal range, but very low executive function, memory, impulse control etc, are not eligible for assistance.

This is seen as a breach of human rights under the Convention on the Rights of People with Disabilities, and it was documented in a report to the Prime Minister delivered on September 9, 2021. It was presented by Judge Andrew Beecroft, then Children’s Commissioner and Paula Tesoriero, then Commissioner for Disability. There has been NO significant change to improve the human rights of those with FASD since that time.

Disability support was also the subject of 2022’s review of New Zealand’s compliance with the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities). The recommendation of that review was that Enabling Good Lives (EGL) should be rolled out for those with FASD.

https://www.fasd-can.org.nz/unpacking_the_uncdpr_for_fasd

© Scoop Media