Call to Parliament for improved access to the residential care subsidy

My name is Grace Taylor. I am the daughter of a mother suffering from Alzheimer's / Early Onset Dementia. Mum is 1 of the 60,000 people in New Zealand currently affected by this disease. A statistic set to triple in New Zealand by 2050.[1]

In March 2018, my mother’s health deteriorated and as a result, medical professionals advised my brother (who lives in Australia) and I that our mum required full time care by skilled professionals. We made the heartbreaking decision to admit our mother into a residential care home.

A bigger hit came in May 2018, when my mother fell victim to unfair legislation that is crippling our family to financially provide for the quality care that my mother so rightly deserves. Two months after mum's condition required her to be admitted into full time care, mum’s application to the Ministry of Social Development for the residential care home subsidy was denied, in full and stood down to reapply again for another 4 years.

This is due to the strict, blanket criteria of the eligibility for this subsidy. More specifically the criteria around the income and asset testing of applicants.

Anyone’s loved ones could require residential care for many health reasons. As of 30 June 2018 there were 31,566 people aged 65+ in long term aged residential care. In addition there were 550 in respite care, for a total of 32,116. There are a further 1271 “Other residents” in living in aged care facilities but who don’t qualify for aged residential care ie “people fully funded by ACC or people with long-term conditions who are not assessed for aged residential care”.[2]

Papers released under the Official Information Act show that each year around 1000 people with assets or income over the threshold receive no government help to pay weekly residential care costs that can reach over $1000.[3]

"The asset base that you have to fall below to qualify for the subsidy is, I would argue, really quite low. We get a lot of people saying to us, look I just didn't know that dementia would be this expensive. It really costs people a lot of money." - Paul Sullivan, Chief Executive Dementia NZ

I went public with my mother’s story on social media in May 2018. Within 24 hours - 10 NZ families contacted me directly with very similar stories for their loved ones with that have required residential care home to care for their loved ones. And there are so many more.

With the denial of her residential care home subsidy due to the asset and gifting threshold set by the Ministry of Social Development, my mother has been stood down for 4 years to receive any financial support for her care home fees. Leaving my brother and I to pay her $4900 monthly fees, for the next 4 years.

I am a single mother, I work full time, have a mortagage, and the only benefit I receive from the government is the OSCAR subsidy for my son’s after school care. Since March 2018 I have been had to take out personal loans, and rely on contributions of my brother, mum’s minimal pension, and my salary to pay $890 a fortnight for our family home mortgage, and $4960 a month for mums care home fee.

As of August 2018, I can no longer maintain these costs. As a result we have been forced into a decision to sell our family home, of 40 years, in order to fund mums care over the next 4 years. A home that was the only place that was familiar and safe to my mother as her dementia took hold, a home I have been raising my son, a home that was my mother’s only material asset, a home that my mother worked 3 jobs to own and provide as security for her children. This is now being taken from us. My mother has never received a benefit from the government and has worked 2 sometimes 3 jobs for over 40 years to provide for us.

I have followed all the formal avenues and processes with my local MP, Ministry of Social Development and Ministry of Health. Having received responses from each minister directly it became very clear that what needs to be addressed is the legislation around the residential care home subsidy. This is my call, on behalf of many voices, for that action. Please raise your voice with me.
Fa'afetai tele lava.

To read more about the detailed bigger picture of my family's story please visit:
https://www.radionz.co.nz/news/national/363396/families-of-dementia-sufferers-face-huge-bills

Tagata Pasifika feature story:
https://www.youtube.com/watch?v=27r-EA0JSJY&t=7s

Here is my open letter to NZ in response to our situtation.
https://www.facebook.com/grace.taylor.5437923/videos/1627972693991555/

References
1. As stated in the report Economic Impact of Dementia (2016) by Deloitte & Alzheimer's New Zealand
2. New Zealand Aged Care Association
3. Radio New Zealand, 6th August 2018