PVI Board of Directors respond to the 18 March announcement by Whaikaha and Minister’s comments.

by

25 March 2024

via email to Penny.Simmonds@parliament.govt.nz

Minister Simmonds,

I am writing on behalf of Parents of Vision Impaired NZ and our parents, families, and caregivers to express our collective disappointment, hurt, and distress over the comments made in the media[1] and in Question Time[2]. These statements were denigratory to the hard work that parents, families, and caregivers of blind, deafblind, low vision and vision impaired children undertake.

For our families, hearing our Minister on the 19th, 20th, and 21st of March publicly dismiss the items that parents of blind, low vision, deafblind, and vision impaired children use their Carer Support for as “pedicures, massages, and haircuts[3]” was a low blow. Our parents are collectively hurt and upset that the Minister responsible for representing us was so dismissive of our need for respite and of our collective wellbeing. Telling our hard-working parents that “funding has been going to carers – that has to be pulled back and prioritised to the disabled person”[4] tells our parents that our lives don’t matter, and this government does not care about our needs, our lives, or the wellbeing of our disabled children. 

Such statements also overlook that disabled children live in families. Our wellbeing as parents, whānau, and caregivers is collectively bound up together.

Parents of Vision Impaired NZ requests the following:

  1. A public acknowledgement of all the hard work parents and whānau do to create a good life for their blind, deafblind, low vision and vision impaired child(ren).
  2. A public acknowledgement that most caring work is unpaid and restricts the ability of parents and whānau to engage in other forms of paid work.
  3. An apology for incorrectly framing how parents, whānau, and caregivers use allocated supports.
  4. Restoration of full funding flexibility for parents, whanau, and caregivers to provide a good life for their blind, deafblind, low vision and vision impaired child(ren).

In addition, the announced changes to Equipment and Modification Services have a direct impact on blind, low vision, deafblind, and vision impaired children and adults.

These changes, along with the reduction in flexibility, means that parents and whānau can no longer claim for blindness-related equipment such as:

  • white canes
  • braillers
  • adaptive electronics (e.g., refreshable braille displays)
  • equipment needed to drive accessible software (e.g., iPhone, iPad, laptop).

Parents and whānau can no longer claim for remedial equipment such as:

  • adaptive sports equipment
  • adapted items for young children (e.g., rattly balls)
  • music equipment (e.g. specialised software with braille and/or audio description).

Parents and whānau can no longer fund travel expenses to events that are not available in New Zealand, such as Braille Music Camp (offered annually in NSW, Australia).

Parents of Vision Impaired NZ requests the restoration of both flexibility and of funding for Equipment and Modification Services for families so that they can purchase adaptive equipment and blindness-related items.

Parents of Vision Impaired NZ would also like to note the following:

  1. Flexible funding for disabled people and their families existed pre-Covid in the form of Enabling Good Lives (EGL) demonstration sites. These EGL sites were fully flexible, had minimal cost overruns, and were whānau centric.
  2. PVI parents work hard, go without, and are deeply invested in the wellbeing of their disabled child. They use their Carer Support (CS) for items that benefit their child, give themselves a break, and enable the family to function. These items are wide-ranging and tailored to the needs of the family.
  3. The nature of vision impairment is unique and comes with many challenges, including additional disabilities. This uniqueness means that there is not a one-size-fits-all approach.
  4. Parents need flexibility in their disability supports to meet the unique needs of their blind, deafblind, low vision, or vision impaired child, and to support the whole family.
  5. The concluding observations from the United Nations International Monitoring Mechanism regarding the implementation of the Convention on the Rights of Persons with Disabilities in New Zealand specifically notes the inadequacy of respite facilities for children and young people. Sending a vulnerable child away, on their own, to stay with strangers is a recipe for trauma and abuse.
  6. Having to employ someone in the home to provide care is not always the most appropriate option and is not necessarily the most effective or fiscally prudent use of funds.
  7. The “whole of life” approach as outlined in the New Zealand Disability Strategy 2016-2026[5], and in particular Outcome 7: Choice and control, directly align with ensuring that disabled people have flexibility in their allocated funding.

I look forward to hearing from you in due course.

Nā,

Dr Rebekah Graham

National Executive Officer 

On behalf of the Board of Directors of Parents of Vision Impaired (NZ) Inc

www.pvi.org.nz

About Parents of Vision Impaired

Parents of Vision Impaired (PVI) is a registered charity which supports parents who have blind, deafblind, low vision, or vision-impaired children. There is no cost to enrol and we provide a supportive community of parents who are overcoming challenges every day. We have 1300 members, with close to 1,000 email subscribers.

PVI offers parents advice, information, and opportunities to meet other parents. We publish a quarterly newsletter (eVision) and have a members-only Facebook page for families and whānau to share information and to network. We run an annual conference and AGM which allows parents and whānau to get together face to face for a longer time to talk, listen and learn in a social setting.

PVI takes an active part in the disability sector through making sure that the voice of visually impaired children and their parents is heard in consultations with government, schools, local councils, and other organisations.

[1] See for example https://www.1news.co.nz/2024/03/19/minister-takes-aim-at-pedicures-for-carers-in-disability-funds-row/

[2] Hansard transcript – Question 11 https://www.parliament.nz/en/pb/hansard-debates/rhr/combined/HansDeb_20240319_20240319_24 

[3] Quote from https://www.nzherald.co.nz/nz/disability-sector-appalled-by-sudden-restrictions-on-support-funding-it-makes-my-blood-boil/5XSXAWKARRGXZIJAS3K4XVV2MQ/

[4] Ibid

[5] Page 20

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