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Much of the discussions since have centred on the ministry’s NZ$65 million budget overrun as well as how the media announcement was made via Facebook. But parents leading the charge against funding cuts have also spoken out about the role respite care plays in their everyday lives.
Last year, the government paid for the equivalent of 4.9 million support hours. During the same period, 120,000 people accessed disability support services that included equipment and vehicle and housing modifications.
According to Minister for Disability Issues Penny Simmonds, the funding reset will take entitlements back to where they were before COVID. Labour has claimed this move will take the sector back 20 years.
Whether it is four years or 20 years, the government moves highlight just how fragile the position of families is when they rely on government support for their disabled children. But the current news cycle also puts a spotlight on how far the community has come in the last seven decades.
Out of sight, out of mind
In the mid-20th century, it was believed a disabled child pointed to faulty family genetics or even potential immorality. Disabled children and adults were usually hidden away in institutions. Their existence was often kept secret, even from siblings.
But in 1949, a group of New Zealand parents founded the Intellectually Handicapped Children’s Parents’ Association. These parents were fighting for facilities and support to keep their disabled children in their local communities. The main option at the time was institutional care.
The government set up the Consultative Committee on Intellectually Handicapped Children. In 1953, the committee recommended expanding what they referred to as the “mental deficiency colonies”. The committee recommended sending children as young as five to these institutions.
The committee decided permanent respite from the “burden” of caring for their children was best for families. Authorities assured the parents their children would be cared for and be “with their own kind”.
However, the current Royal Commission on Abuse in Care puts paid to those claims, with multiple survivors sharing testimonies about neglect and abuse in these institutions.
After two decades, the Royal Commission into Hospital and Related Services in the 1970s halted the unabated growth of these institutions. But it wasn’t until 2006 when the last one, Kimberley near Levin, was closed after protest led by disabled people.
The Disabled Persons’ Community Welfare Act (1975) provided some support. However it was still less than the support provided by the recently established Accident Compensation Corporation for those who were those disabled through an accident.
Deinstitutionalisation accompanied the growth of the disability rights movement with demands for autonomy and agency for disabled people. Inclusion rather than segregation became an aspiration and expectation for disabled people and families.
From NASCs to Enabling Good Lives
In 1993 disability support was moved from the purview of social welfare to health. The government introduced the Needs Assessment and Service Coordination (NASCs) system with narrow eligibility for those with intellectual, physical or sensory (vision, hearing) impairments. Autism was not eligible until 2014 and many neurodivergent conditions are still not covered.
“Carer relief” provided a minimal amount of money for out of home care, if suitable carers could be found.
The 2000s was a busy time for the disability community with the first minister and an Office for Disability Issues, a disability strategy and a carers’ strategy.
But families were still not paid for their carer roles – placing immense pressure on household budgets. After multiple legal challenges to the status quo, restricted provision for family funding was introduced.
In 2011, disabled people and their allies developed the person-centred principles of the Enabling Good Lives framework.
During COVID, families were allowed more support and flexibility in how funding was spent. In July 2022, the community finally got its own ministry, Whaikaha.
24/7 care and the need for respite
Care can include constant planning and managing daily routines including medical interventions and personal cares, feeding, lifting and transferring, remaining alert through wakeful nights, and to children whose behavioural responses can be unpredictable. Care includes trying to avoid situations of sensory overload, constant washing and cleaning, fighting for school access and against other barriers, finding and employing carers, learning new communication technologies and fighting for appropriate equipment.
There may also be also hostility or indifference from those who don’t understand. Families with disabled children are often also supporting other siblings and keeping a sometimes fragile family unit together with precarious finances. This care is often for the lifetime of the disabled person.
Respite funding offers carers a break from their caring routines, but also for disabled people to have a break from families.
Just as in 1949, parents want to care for their much loved children but the support and respite required varies from family to family as each disabled person is unique. Respite must be flexible, funded and timely. But now that flexibility has suddenly “paused”.
The Intellectually Handicapped Children’s Parents’ Association is 75 years old this year. Despite much advocacy, few gains are really entrenched in a way that can’t be taken away. Instead, support is fragile. The assumption endures that only “natural” supports – family and, in particular, mothers – are required for disabled children.
Those earlier battling parents would recognise today’s battling parents. Disabled children and adults are again second class citizens. But what this debacle has shown is that the “disability sector” in all its diversity, is united, strong and vocal.
Alongside my career path from a PhD in computer science, work as a nurse and ambulance officer and now a university lecturer in nursing, I have become progressively deafblind.
As a result, I have personal experience navigating New Zealand’s health system, both as an employee and patient living with dual sensory loss.
My experiences provide me with a unique perspective on how important it is to integrate technology well into healthcare practices. Currently, accessibility is often lacking or insufficient, both for staff and patients.
My work focuses on bridging the gap between technology and nursing to make digital health accessible. A broader review of existing research confirms this need: accessibility is often an afterthought in software development, and digital health solutions are designed in a way that makes them inaccessible.
Accessibility must be part of early software design
One in four New Zealanders lives with a disability. Despite this significant portion of the population, digital solutions often overlook their needs.
For example, the YourRide taxi booking app’s launch last year has created difficulties for total mobility scheme card holders, with some struggling to access their taxi service equitably. With 89,000 individuals relying on the scheme in 2022, it is essential that they have equity in access to taxi transportation.
The app does not cater for total mobility card holders and a national taxi company is making them call by phone to confirm their status. This is further complicated by a malfunctioning text-as-taxi-approaches system, leaving those without app access no way of knowing how far away the taxi is without phoning the company.
This system has led to delays, multiple phone calls and missed appointments. Had the app been designed with total mobility card holders from the beginning, these issues could have been avoided.
While major companies like Apple and Microsoft have proprietary accessibility libraries, their usage is not widespread and considerably variable. Some accessibility test tools exist for web-based applications, but their implementation varies. And not all digital health solutions are web-based and guidelines for native applications are scarce.
It is important to integrate accessibility in the design phase of any project. One of the recommendations of a Digital Health Leadership Summit held in 2023 was that New Zealand should adopt a national strategy for accessibility in digital health, moving away from the fragmented approach.
Community engagement and collaboration are crucial to informing design in digital health and enhancing data collection and analysis. Projects such as Hira, which put in place the foundations for initiatives such as My Health Record, foster inclusivity, user-centred design, legislative compliance and equitable resource access.
Considering accessibility in the design phase and upholding ethical standards in digital health is essential. Flexible and adaptable solutions that cater to diverse access needs are necessary, along with clear information, navigation and personalisation to meet the specific requirements of individuals with disabilities.
Gaps between recommendations and reality
Unlike some other countries, New Zealand does not have legislation explicitly addressing or policing accessibility.
… a lack of recognition, across all government portfolio areas, that disability is a whole-of-government responsibility.
The UN also stressed that legislative and policy frameworks on disability should align with the Treaty of Waitangi to ensure active involvement in decision making and consultation with Māori with disabilities. It recommended a national strategy to increase awareness and promote respect for the rights and dignity of people with disabilities.
The discrepancy between recommendations and reality may be related to employment. Only 44% of people with disabilities are employed, compared with 69% of those without disabilities. This disparity in employment rates suggests a need for greater inclusivity and support for individuals with disabilities in the workforce.
In healthcare, staff with access needs appear to be undeserved.
My first experience of this was when I worked as a nurse. I had disclosed my disability and was using a magnifying glass to check drug vials when giving medications. I had made no errors.
But the charge nurse nevertheless told me she no longer wanted me to use a magnifying glass as it decreased the public’s trust. If I had been quicker off the mark, I could have asked how a magnifying glass differs from reading glasses.
Her attitude raises important considerations regarding the perception of disability within healthcare environments. Her request to restrict the use of a tool that allowed error-free medication checks highlights a potential lack of understanding or sensitivity towards the needs of individuals with disabilities.
Last year, a German survey using sign language found that a lack of understanding of disability needs meant that deaf people were choosing not to engage with the healthcare system.
A similar survey in New Zealand could provide valuable insights into the barriers deaf people face. It could compare the effectiveness of digital versus face-to-face consultations and exploring the use of digital solutions such as closed captions in tele-health consultations.
Rooted in the medical model of health which historically focused on deficits and impairments, the prevailing attitudes towards disability have often been shaped by societal norms that prioritise able-bodiedness. This has led to the marginalisation and stigmatisation of individuals with disabilities, who were seen as a deviation from the norm.
The legacy of these historical perceptions continues to linger. Despite advancements in understanding and awareness, an undercurrent of discrimination and exclusion prevails. This is reflected in the limited access to resources, opportunities and support systems available to individuals with disabilities.
People with disabilities have a long history of distrust in the health and disability systems in New Zealand. Improving education and training, building trust and promoting effective data sharing are essential for enhancing their care and experiences.
My goal is to advocate for this change. I want to ensure that digital health tools are designed with an equity lens, where disability, just like culture and gender, is given due consideration. This isn’t just about technology. It’s about reshaping our society’s approach to health, disability and inclusivity.
