Jacqui and Hemi Whyte in Hemi's room at Summerset by the Sea. Photos / Rebecca Mauger
Everyone knows Hemi Whyte at Summerset by the Sea.
He's a popular fellow at the aged care facility and he gets a wave and a kind word by fellow residents and caregivers.
''He's got his little posse that come around and they chat and hang out,'' wife Jacqui says.
While that's lovely, Hemi's not old. He is Summerset by the Sea's youngest resident at age 52.
There is nowhere else in the country for him to go that caters for his needs.
Hemi was diagnosed with spinocerebellar ataxia type 1 (SCA1) 10 years ago, a rare disorder similar to Huntington's disease.
Wife Jacqui says Hemi went from working fulltime, being an active dad who loved to swim, fish and boogie board at the beach, to being in a power chair unable to walk, drive, or shower unaided.
They moved to Katikati from Waihi Beach a year ago after the Whyte family had to move out of their rental. It was a struggle to find a home, Jacqui says, but before long Hemi was assessed as needing hospital-level care.
It was a devastating time for the family but proactive Jacqui started investigating their options.
''I knew there were places Hemi could go if he were not too bad but it's the hospital-level care that was needed. He could no longer stay at home and of course we were not coping at home as well.''
Jacqui discovered there is nowhere in New Zealand for people needing specialist/hospital care who are under-65s.
''I want to bring to people's attention to what happens to people like Hemi. There are no purpose-built facilities for adults (under-65) that need hospital-level care.
''We were told that the only options were at aged care facilities. Some have contracts with the Ministry of Health and are able to accept people like Hemi, however they don't have to.
I would love it if one of the providers had a purpose-built facility tagged on to where they are, because if you think about it, everything is there.
''Imagine if they could be around people in their same age group? It would be amazing.''
Hemi has been at Summerset for a year. It was the fourth facility they approached in the Western Bay and they feel extremely lucky he was accepted at the ''beautiful'' village.
The ministry fund Hemi's room but families are liable for the additional daily room rate.
Jacqui had to fundraise quickly to afford the charges and a Givealittle page raised about $12,000 which went towards his first year. He's now in one of the two rooms which does not incur any additional charges.
Fundraising is ongoing though, for his extra basic needs.
''It's awful for him. Imagine also being a man with no money at all ... you can't do anything.
''Because we are married, if your spouse is reliant on you he gets nothing. If he was on his own he would get some sort of benefit. It's all on me. It's a battle and it's a challenge.''
Jacqui is receiving all the support she is entitled to from Work and Income. A spokesperson from Work and Income says the assistance a person can get is determined by an income and asset test which also applies to a person's partner.
They say they sympathise with Jacqui's situation and they've ensured she is receiving the full and correct entitlements for their family.
Jacqui and Hemi have three children and Jacqui works fulltime.
''I'm highlighting the challenge that people like us face as there are so many younger people with MS, motor neuron disease, Huntington's disease and the like, and the only option is staying at home when the family is really struggling ... or at aged care.''
They're lucky to be at Summerset, Jacqui says. And they're lucky Hemi's attitude is amazing.
A spokesperson for Te Whatu Ora – Health New Zealand says there is less demand in New Zealand for long term hospital-level care for people under 65 ''therefore the best option is sometimes offered locally by an aged care facility, regardless of the person's age".
''Most people prefer this local option, rather than a service which could mean moving out of the region and therefore being less accessible to whānau.''
Jacqui would like to hear from others in the same sort of predicament. She can be contacted on 027 476 4614 or jaxwhyte@xtra.co.nz.
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