In case there is any doubt or debate about whether FASD is a disability – it is. Let’s look at some definitions so the matter is clear.
• The UNCRPD definition of disability:
“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Persons with disabilities include 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.”
• The World Health Organisation’s definition of disability:
“Disability results from the interaction between individuals with a health condition … with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.”
• Te Whatu Ora / the Ministry of Health NZ states:
“The 2013 New Zealand Disability Survey estimated that a total of 1.1 million (24%) New Zealanders were disabled. Disability was defined in the survey as any self-perceived limitation in activity resulting from a long-term condition or health problem lasting or expected to last 6 months or more and not completely eliminated by an assistive device. People were not considered to have a disability if an assistive device such as glasses or crutches eliminated their impairment.”
• The Centre for Disease Control [CDC] in the USA defines disability as:
“A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”
• An ordinary dictionary definition of disability is:
“A physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”
FASD clearly meets all definitions above for inclusion as a disability. The symptoms of FASD come from a health condition (brain and central nervous system damage) that materially affects a person’s ability to do certain things, interact and participate in daily activities.
The NZ Government has accepted that FASD is a disability, but has yet to make available access to the Disability Support Services (DSS) 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.
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is an international human rights treaty which sets out the fundamental rights of people with disability. It’s 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.
People with FASD therefore have human and disability rights covered by international treaties. It is the New Zealand government’s job to ensure they are enacted and upheld in our country.
To access a plain language guide to the UNCRPD developed by CanFASD, click here.
You can access other plain language and easy-read guides to some UNCRPD articles through these links:
General Comment No.1 (2014), Article 12: Equal recognition before the law
General Comment No.4 (2016), Article 24: The right to inclusive education
In 2016 New Zealand also signed up to the Optional Protocol to the UNCRPD. The optional Protocol enables individuals or groups who claim their rights under the Convention have been breached, to make a complaint to the United Nations Committee on the Rights of Persons with Disabilities. This Committee is made up of a group of independent experts who also monitor implementation of the Convention by the countries that sighed the Convention.
Click here for a plain language version of the Optional Protocol.
The UNCRPD is important because it sets out legal rights for disabled people, and it can therefore be used by families to advocate for those rights, and the supports and services people with FASD need so they may experience equity in our society, grow and thrive. You may be interested in reading the CanFASD Issue Paper: Framing Fetal Alcohol Spectrum Disorder Policy, Practice, and Research Using the United Nations Convention on the Rights of Persons with Disabilities.
When signing the Convention, New Zealand agreed to provide regular reports on its implementation. Our first report was due two years after signature of the Convention, and then a review is due every four years thereafter. New Zealand’s first review started in 2011 with the Review Committee’s concluding observations being released in 2014. At the time of this review many issues were identified for the government to address.
The second review of New Zealand’s implementation of the UNCRPD started in March 2018 and ended in August 2022. This time the Review Committee provided the New Zealand government with 60 concluding observation recommendations. In 2023 the government of the day agreed to implement 51 of these, although several of these were agreed to only ‘with modification’. The remaining nine observation recommendations were noted. This means they will not be implemented but it is possible they may be revisited at a later time.
The government also agreed to hold a public Domestic Forum with the disability community by December 2027 to check progress towards implementing the recommendations.
Click here to go to the Government response to the UNCRPD recommendations.
Click here to see a document which maps the recommendations to the leading and supporting agencies which must be involved in their implementation.
In the table below, we highlight eight particular observation recommendation that will be relevant to people with FASD and their whānau/ families. Unfortunately, only one of these was accepted without modification, four were accepted with modification, and three recommendations, falling under the leadership of the Minister of Education, were just ‘noted’.
Note that FASD-CAN supports the retention of Residential Special Schools as an education option for our families until mainstream education becomes truly inclusive and there are appropriate community-based supports for people with FASD and their caregivers, families and whānau.
|
ARTICLE |
RECOMMENDATION |
LEAD |
SUPPORT |
|
Living independently and being included in the community (art. 19) |
40 (a) Expedite the national rollout of the Enabling Good Lives programme and ensure that all persons with disabilities, including people with foetal alcohol syndrome disorder, are eligible; |
Whaikaha ACCEPT/MODS |
|
|
Living independently and being included in the community (art. 19) |
40 (b) Develop a comprehensive deinstitutionalization strategy, with specific time frames and adequate budgets, to close all residential institutions, including group homes and residential specialist schools, to provide community supports for persons with disabilities to live independently in the community; |
Whaikaha |
Health Education OT |
|
Living independently and being included in the community (art. 19) |
40 (d) Take measures to cease investment in residential specialist schools for children with disabilities and establish a deinstitutionalization process that ensures adequate support is provided for children with disabilities to return to their families and exercise their right to an inclusive education. |
Education |
OT |
|
Respect for home and the family (art. 23) |
46 (c) Significantly increase and resource comprehensive information, services and supports for children with disabilities and their families to prevent out-of-home placements and placements in institutions, including residential specialist schools; |
Whaikaha |
Education OT |
|
Education (art. 24) |
48 (a) Develop an inclusive education strategy that includes measures for the devolution of segregated education settings into a mainstream inclusive education system, to transition funding and resources from specialist education to inclusive education, to prioritize inclusive education in teacher training, to establish uniform, inclusive education policies and guidelines, to develop an inclusive education curriculum and to promote and raise community awareness; |
Education |
|
|
Education (art. 24) |
48 (b) Withdraw the proposal to change entry requirements for enrolment in residential specialist schools and redirect funding and resources into an inclusive education system; |
Education |
|
|
Education (art. 24) |
48 (c) Develop specific culturally appropriate strategies to address the high proportion of Māori children with disabilities in residential specialist schools, including the provision of supports to remain with whānau (extended family networks) in their local communities. |
Education |
OT |
|
Adequate standard of living and social protection (art. 28) |
54 (c) Ensure people with fetal alcohol syndrome disorder, chronic fatigue syndrome and other chronic and rare conditions have access to the disability support system and are included in disability policies and programmes. |
Whaikaha |
Health OT |
Implementing these recommendations requires change at a societal level – and this kind of change usually takes place slowly. It also requires the government to provide resourcing to help make the necessary changes that will improve the lives of people with FASD.
Over time we would hope to see a significant shift in attitudes and understanding of FASD, and a significant increase in the amount of resourcing invested to provide fair and equitable life experiences and outcomes for people with FASD - just as every other member in our communities would expect to experience. And this is true for all people with disabilities. We encourage everyone to be aware of the government’s commitments and to keep the pressure on them to fulfil their obligations as soon as possible.
