MS: Busting the Myths
June 23, 2023 | Advocacy, Carer, Carers, Media, Petition
Media Release: Friday 5th June 2023
A powerful Alliance representing 56 national not-for-profits is demanding the Government stop “dragging its feet” to provide long overdue recognition and basic rights for the estimated one million largely unpaid New Zealanders struggling to care for whānau and loved ones.
The Carers Alliance is now taking its fight to parliament with a nationwide petition and WeCare awareness campaign, calling for a formal home in government for carers, and legislation to provide long overdue financial and respite support for those looking after frail, unwell and disabled family, whānau and aiga.
Carers New Zealand CEO and Carers Alliance Secretariat Laurie Hilsgen says despite the implementation of multiple government Carers’ Strategy Action Plans since 2008, recognition and true support is still desperately lacking.
“We’ve had enough of being side-lined by successive governments over this pressing issue. Respite is a very broken system in Aotearoa New Zealand, with a hidden workforce of a million carers suffering burnout and struggling daily, in dire need of financial support and emergency respite. The situation is shocking.”
The Carers Alliance is calling for a formal home in government for carers – a Minister, a Ministry, or a Commissioner – plus a commitment to introduce protective legislation and programmes to sustain carers physically, mentally, and financially.
“Without a government framework and leadership, the needs of carers will always come last,” says Hilsgen.
“Those providing intensive support deserve to be fairly paid like any other workforce as they are providing a valuable service to family members and the country. Their caring commitments often prevent them from participating in other paid work and this means a choice to care is often a choice to be poor.
“New Zealand is missing out on $540 million in lost tax revenue from working-age carers every year, and carers themselves are missing out on more than $1.5 billion in annual earnings, including lost Kiwisaver contributions, she says.
The Carers Alliance wants the Government to urgently address issues raised in two landmark reports – The State of Caring in Aotearoa Report commissioned in 2021 and an Infometrics report commissioned by Alzheimer’s NZ, Carers NZ, IHC and the Carers Alliance last year – exposing the vulnerable state of family carers nationwide.
Using 2018 Census data, the Infometrics report calculated the economic value of carers’ mostly unpaid work as being $17.6 billion a year or 5.4% of GDP. The report recommendations include better financial recognition and support for carers, targeted wellbeing measures such as a responsive respite system so carers can have breaks, and partnerships with employers to help carers more flexibly work and earn.
The State of Caring Report, with input from 1650 carers nationwide, shows they have much higher rates of anxiety, loneliness, and poor physical health than the general population, with 70 per cent suffering from depression– largely due to financial stress. Half report having had to give up paid work due to family caring commitments. It also found many carers struggle to know what support is available and how to access it, with only 32 per cent managing to access respite breaks a few times a year.
Carers Alliance member Multiple Sclerosis New Zealand (MSNZ) says many families caring for loved ones report being at breaking point.
“The number one concern expressed to us by our members is that family carers are burnt out. They are struggling to make ends meet or access any form of respite support,” says MSNZ National Manager Amanda Rose.
The New Zealand Institute of Economic Research’s 2021 report on the Economic burden of MS, commissioned by MSNZ, estimated the total value of MS family care contribution from that year alone at $27.5 million dollars.
“There is a critical shortage of respite services in Aotearoa New Zealand. Carers are struggling to navigate the complexities of the respite system and there is not enough capacity to meet the need. As an organisation at the coalface, MSNZ absolutely supports this petition. The Government urgently needs to care for the carers and acknowledge their contribution so they can keep going,” says Rose.
The Carers Alliance petition will be presented to Parliament after it closes on July 18th. (Now extended to January 2024)
Link to the petition https://petitions.parliament.nz/390fec4e-437c-45cd-a182-08db3f91e80e
For media interviews please contact:
Laurie Hilgsen, Carers Alliance Secretariat
info@carers.net.nz 021 702 922
Amanda Rose, MSNZ General Manager
amanda@msnz.org.nz 03 366 2581
Click to view The economic contribution and sacrifices of unpaid family, whanau and aiga carers in New Zealand report
Carers Alliance Organisations
Age Concern NZ, Allergy NZ Inc, Alzheimers NZ, Anxiety NZ Trust, Arthritis NZ, Associated New Zealand ME Society (ANZMES), Autism NZ, Balance NZ, Blind Low Vision NZ, Cancer Society NZ, Carers NZ, CCS Disability Action, Cerebral Palsy Society of NZ Inc, Complex Care Group, Continence NZ, Cystic Fibrosis NZ, Dementia NZ, Diabetes NZ, Eating Disorders Carers Support NZ, Ehlers-Danlos Syndromes NZ, Epilepsy NZ, Fetal Alcohol Spectrum Disorder – Care Action Network, Fragile X NZ, Grandparents Raising Grandchildren, Head Injury Society, HeartKids, Hospice NZ, IHC New ZZ, Kidney Kids of New Zealand, Motor Neurone Disease Association NZ, Multiple Sclerosis NZ, Muscular Dystrophy Association of NZ, NZ Down Syndrome Association, NZ Federation of Disability Information Centres, NZ Foundation for Conductive Education, NZ Council of Christian Services, NZ Spinal Trust, Parent to Parent, Parents of Vision Impaired (NZ) Inc, Parkinson’s NZ, Rare Disorders NZ, Rescare NZ, Rest Assured Respite Trust, Retina NZ, SAMS, Stroke Foundation NZ, Student Volunteer Army, The Angelman Network, The Personal Advocacy Trust; TOA Pacific, Tourette’s Association of NZ, Vaka Tautua, Yellow Brick Trust, Young Carers NZ