by Jane Carrigan
Newsroom: 30/12/2023
5 Wishes for 2024: I hate this work as a disability advocate. It is so unnecessary. It is exhausting. I wish it wasn’t needed.
Comment: In my role as an independent disability advocate, I spend my life fighting for those who cannot fight for themselves. Those I advocate for have in common that they care full time for their family members with high needs, particularly those with an intellectual disability, providing round the clock support every day of the week every week of the year.
Often, they do this alone, with little if any family or government support. Life is either not predictable or too predictable. Chaos and violence are something many families must try and self-manage, poorly equipped and unsupported as they are in this role. Wellbeing is not a reality.
For many family carers the work is exhausting and thankless. For the intellectually disabled person, life in the family home (and even those in residential care) is limited by a system which largely ignores their needs – rendering many, if not most, completely invisible.
‘Mainstream’ is what we are told by people who have their own lived experience of a physical or sensory disability, but little comprehension of what life is really like for these families and individuals.
This desire to mainstream everyone and a steadfast refusal to provide specialist services means those with high needs and their families can no longer access local support, early intervention, day programs or respite, as they were once able to. This is because they are no longer provided; yet there is nothing out there to mainstream to.
A recent report (yes, another one) posed the question – why do people with intellectual disabilities die on average 20 years earlier … it seems no one knows.
I know. The individuals and families I fight for are ignored by the same disability support services the Crown is legally responsible for providing. Living, as many of them do, in sub-optimal residential or family homes. Isolated by loneliness and poverty. Hidden by the disability narrative that doesn’t want to consider these issues because it impacts negatively on the brand that is now disability. Everything in disability land must be positive and happy.
So it is in that context, as an independent disability advocate, that I wish for the following:
1/ Give family carers a fair go
The Government must allow family carers to be part of the community. This cannot occur when family carers are exploited 24/7.
For example, accept that the people they care for have a lifelong disability and abolish the pointless, intrusive, dishonest, and demeaning annual needs assessments and outcome plans from across a range of departments.
For individuals, appoint a case manager, one who isn’t lumbered with hundreds of other high-needs cases to manage. Work to care and identify harm. This also gives people a central point of contact. The involvement of this role benefits both the family carer and the individual with the intellectual disability.
Cut out the lucratively funded middlemen, who for too long have administered the disability support system for the government. Instead pay family carers directly – a tax-free, inflation-adjusted, weekly allowance. This isn’t as costly as it sounds. In fact it would sit at about two-thirds of what a realistically funded residential care funding package should cost.
Instead of shovelling people with a disability into rest homes (where they no longer count in the disability budget) the Government should bring back day programmes, meaningful respite, and expect competency and integrity from the service providers of residential care, so they can trust this service once more.
This would be genuine social investment, enabling the good life of the intellectually disabled person ahead of the patronage that currently secures closed tendered contracts benefiting third parties to assume the Crown’s responsibility.
Discrimination against high needs intellectually disabled remains rife, especially from within the disability sector. So conflicted as many are by their own personal lived experience and which sits front and centre in their decision making.
This Government has talked a big game about efficient and effective governance. The disability funding sector provides it with the perfect case study to highlight wanton waste.
2/ Audit disability services
Have the Auditor-General conduct a forensic audit of disability support services spread across its various Ministries including Education, Ministry of Disabled People, Ministry of Social Development, Health, Oranga Tamariki and Housing which operate in their own confined silos.
None work together. Who misses out? The intellectually disabled and their careers. Return probity, competence, and unconflicted decision making to the public service domain that is disability supports services; irrespective of which of the numerous silos it sits within.
3/ Abolish the two-tier disability support system
Disability is treated differently depending on whether you’re funded by ACC, the Ministry of Health or the Ministry of Disabled People.
It was always the original intention of ACC that health and disability support services would be absorbed into the ACC system. Instead, we now have both systems completely beset by bureaucratic obstacles; ACC now acts as little more than an investment bank dabbling in disability.
Health and disability support services presents a 30 year failed experiment, losing a generation of families and individuals within it.
4/ Comply with ratified international treaties
Yeah right! We have signed up and ratified international treaties since the 1980s – yet all we do is cherrypick what we want and repeat on high rotate whilst ignoring the intent, much less the application of the actual treaty.
Once upon a time we funded hospitals, institutions and residential care adequately. It is not that as a country we do not have the money for a competent health and disability system. We do. What we now lack is the will to implement common sense, much less apply our committed legal responsibilities.
Disability alone acts above the rule of law, ignoring as it does repeated Court of Appeal decisions directing it.
5/ Make me redundant!
My last wish is personal. I hate this work. It is so unnecessary. It is exhausting.
There is a chasm between the disability rhetoric and its reality.
Bureaucrats of the public service – you want to be rid of me? Make me redundant and, if not, at least give me a day off.
JANE CARRIGAN
Independent disability advocate Jane Carrigan has repeatedly gone to court to fight for the rights of disabled people and their carers.