Fool’s gold or a genuine helping hand? Navigating the home health care maze

My home health care package approval (level 3) came recently. It follows 10 months of being knee-deep in ‘sorting out’ the process after two years of uncertainty. I cannot express how grateful I am — the path can be daunting, confronting and quite scary.
For those unfamiliar with the home health care program, it provides people like me (with complex health needs) with assistance so we can stay at home. It’s a mix of services that includes things like help with household tasks through to clinical care (nursing, physiotherapy and allied health services). Level 1 is your basic care and Level 4 is for those who have high care needs.
It has been an interesting tale of government hoop-jumping (on mega steroids) with me and my family’s constant query of ‘why don’t they believe us?’. Were we accused outright of lying, heck no, but the constant, unrelenting rejection of paper work; double and triple checking of medical consultant’s qualifications; the demands of proof of scans, X-rays, MRIs, records of medical appointments and hospital admissions; and whether I like two- or three-ply toilet-paper (sorry, not applicable), were, it seems, all simply thrown into a blender of computer-speak and an algorithm decided …
Computer says no.
Apparently, my need of a ‘Willy Walker’, incontinence pants and an inexplicable fetish for hospital food convinced the powers-that-be I was on a one-way mission to bankrupt the Australian economy. Yep, little old me.
So the dart throwing, hit-and-miss competition that represents life expectancy and/or the cost of ‘Stayin’ Alive’, Stayin’ at Home’, my journey into the rabbit hole abyss of government bureaucracy continued.
My advice to anyone who should wish to travel down this road. Be honest, be thorough, be patient, be determined. Do not take ‘No’ for an answer!
For more than 30 years I have suffered extreme Willis-Ekbom disease ([WED], also known as restless leg syndrome [RLS]). I’ve also had a 10-year stint with breast cancer, which culminated in a mastectomy. Mental issues, arthritis (spine, knees, hips, hands), ulcers, anaemia followed.
Approximately five years ago I was diagnosed with vocal cord dysfunction, severe late-onset asthma and chronic obstructive pulmonary disease (COPD); each nasty in their own right but, as a combination, not so good. Some folk lead normal and productive lives for years with these conditions, unfortunately, I was not destined to be one of them.
Research explained I would, sooner rather than later, be coughing 24/7, need oxygen 24/7, need to be near a hospital 24/7 and probably be a right royal pain 24/7.
My point here is not to wallow. My point is that I need help to stay at home. I am unwell, very unwell. I did not receive Level 3 HCP out of some misguided bureaucrats need to ‘do good’.
I wish I didn’t need Level 3 but, apparently in a surge of efficiency, they’ve also ‘rubber stamped’ me for Level 4. That’s the top of the stairway, the end of the escalator, the Pearly Gates.
In my opinion, I think we older Australians are quite well looked after, within reason. No, I don’t have money to throw into the pokies, connect to Foxtel or indulge in the latest wrinkle cremes. But I will enjoy huge discounts on home delivered meals, domestic services, home repairs and maintenance and gardening. Best of all, I won’t be a burden to my family.
To me, this whole challenging, mystifying, white-knuckle experience has not been a fool’s errand; it’s 24 carat gold!