Eighteen months ago I was on a benefit. Shock, horror! Yes, I was on a benefit. I’d been on what is now the Supported Living Payment (SLP) for about 5 years. The washing machine was on its last legs, I’d fixed the oven using spare parts from trademe (just the door which wouldn’t stay closed), every cent had to be spent with care, I couldn’t save and the financial future looked pretty hopeless really.
Why was I in this predicament? Because I’m a mum and one of my adult children is disabled. She needs full time support. This includes what we delicately refer to as “intimate” care, but her brain is perfectly fine and like me and probably you, she isn’t comfortable with people she doesn’t know (and most of those she does know) seeing her undressed, or touching and cleaning parts of her usually considered private. Apart from that, her combination of physical needs is unique, demanding multiple specialised skills, and failure to meet them properly would result in serious emotional and probably health consequences.
It was more than 6 years ago that her needs changed to this degree. She has a progressive disorder that relentlessly removes physical capability a bit at a time. Back then she was hospitalised for a serious unrelated illness and when she recovered from that she needed round-the-clock support. Although she’s bounced back somewhat, she still needs someone with her most of the time. She felt extremely anxious about relying on support workers who might not turn up and would need to be trained to meet her needs. When you don’t have much energy to meet the ordinary demands of living, expending energy training people over and over (because of churn) seriously reduces your quality of life. The thought that you might fall or endure some other misadventure because of a new person not knowing your needs or not listening to you is worrisome. You really don’t need more worries than you already have, believe me!
With the initial health crisis over, we talked about it and decided that the best thing for both of us was that I should be her caregiver. For me it means that I’m no longer worrying about her wellbeing while I’m at work. For her it means she has a reliable person who understands her needs to support her. It has enriched the mother/daughter relationship for us both. The means to achieving this nirvana of care was the Domestic Purposes Benefit (DPB) for caregivers. The main drawback is that benefit levels are so low and given the reason for being on the DPB/SLP, the only way out of the financial trap was death of one or the other of us (or winning lotto - which is tricky when you can’t afford to buy tickets).
Then along came Funded Family Care (FFC). The Atkinson case had been dragging through various courts for years and eventually the Human Rights Review Tribunal made a decision. Some time later the government changed the Health and Disability Act on Budget day with much fanfare about how family members providing significant care would be paid. When the actual legislative changes were made public however, it was clear that the promises were almost empty.
We read the FFC policy, realised we were eligible and after a lengthy and fraught process, I am now paid minimum wage for 40 hours of care per week, although the hours of support my daughter is assessed as needing are about three times that. We’re grateful because we are much better off. My pay through FFC is about twice what my income was on SLP, and the improved finances mean a better life for both of us. Last year we replaced a rotten ramp, changed carpet with underlay for carpet without underlay in the living room (sounds mad but firm surfaces are easier for people with weak arms to move a wheelchair on), bought specialised cushions to increase comfort and reduce the chance of pressure sores, and managed to get involved in community activities on a regular basis because we could now afford the travel costs to get there. One of the issues we had faced was social isolation, so this last is a biggie. Another issue, as you can tell from where the new money went, was disability needs not covered by The System.
Now, as I said,we are grateful for Funded Family Care. Our lives are better as a result of it BUT, it is a long way short of achieving what the Human Rights Review Tribunal decision clearly intended and we are one of the lucky few who can benefit from it.
The limitations are many. The worst is that FFC does not permit partners or spouses to be paid to care for their disabled 'other half', though ACC claimants can do this. Slightly less terrible but still offensive is the fact that family members can only be paid minimum wage but other carers coming in to do the same tasks can be paid much more. There’s also the conundrum that FFC is restricted to disabled people with high and complex needs, which by definition means that they have complex health issues, serious communication difficulties, serious learning or behavioural difficulties, or a combination of these. Yet they are required to accept the responsibility of being an employer. If you read the FFC policy you’ll see there are a lot of conditions including limits on other paid work.
Now FFC is under review. There’s a lot I would change. The existing scheme is a reluctant response to a Court decision, set up to keep the costs of the scheme as low as possible but ignoring cost savings in other areas and thumbing its nose at the judiciary and our civil rights. Supporting family members to care for people with high and complex needs can save years of residential care costs, and be better for all concerned, even the residential facilities, which do not cope well with this particular task - see this 2011 report and this news story.
Perhaps the biggest change I wish for is that our decision makers will put people, fairness and justice at the heart of their choices rather than narrow questionable costings.
Te Reo proverbs express this better than I can:
He taonga rongonui te aroha ki te tangata
Goodwill towards others is a precious treasure
I orea te tuatara ka patu ki waho
A problem is solved by continuing to find solutions.