After seven decades of fighting, disabled people are still vulnerable when it comes to support

The recent Facebook announcement by Whaikaha – the Ministry of Disabled People on changes to funding for carers and equipment modification and services has put the media spotlight, once again, on respite care for families with disabled children.

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.

Disability funding in New Zealand includes carer support and individualised funding respite.

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.

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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.

Disabled New Zealanders had significant input into the United Nations Convention on the Rights of Persons with Disabilities (2006). A select committee investigated care and service provision.

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.

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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.