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Another member writes to the Pensions Review
Friday 26 September 2008
Riverland member Clytie Siddall has added her voice to our campaign to get the needs of people with ME/CFS better understood by the Pensions Review committee.
Disability Pension review
To the committee:
My teenage daughter has ME , a debilitating lifelong neurological condition similar to MS. She was granted the Disability Pension at age 16, and we are deeply grateful for its help.
1. Expenses of a progressive disease
Since you ask about how effective the pension is, I can give you some facts from experience of caring for a disabled child/adult. In particular, complex conditions with progressive disabiity like ME require a great deal of costly medical and supplemental support:
• hydrotherapy to slow down deconditioning ($5 per visit, and you should go three times a week)
• experimental medications, and supplements not on the PBS (e.g. l- carnitine, l-serine, Efamol Marine, COQ) to slow down deterioration of organs
• life-threatening food allergies mean buying food alternatives not readily available in supermarkets
• bed chair to prop the person up in bed (unable to sit unaided)
• electric bed/chair to try and reduce pain and debility (changing position, better support)
• foam "eggshell" and pure wool overlays to reduce bed sores
• organic natural fabrics to avoid eating away skin which then won't heal (silk causes the least damage)
• HEPA air filters to reduce damage from local irritants in air
• multiple and severe chemical sensitivity means having to find unbleached, non-volatile products, which are not yet common and can be very expensive
• bulk-billing is unavailable in some country regions: you must pay $50 up front just for a 5-minute appointment with a GP. huge dental bills trying to save teeth, then operations to remove them, then dentures
• physio/chiro/massage to ensure maximum mobility and try to reduce pain/debility (every week, and private health cover only gives you part-payment for a few visits)
• huge GAP for home visits by any health practitioner (bedridden person permanently harmed by being moved)
• sound-proofing and temperature control essential since noise and changes of temperature do permanent harm
• taxi fares: there is no public transport in country regions, and a disabled child or adult usually can't drive
• prolonged hospital stays in the city mean family having to stay there to support the patient: living costs and loss of income are very
2. Avoiding blowout in disability pensions
There are two proactive things you can do to avoid a huge drain on disability pensions with the greatly-increased incidence of long-term disease:
(a) resuscitate WorkCover:
Workcover used to look after people effectively and support them in getting back to work. Now it places a great deal of stress and financial strain on them at exactly the time when they need the most support. Many people then don't have the help they need to go back to work, they get much sicker, and end up on the pension long-term.
(b) subsidize income-protection insurance:
I, too have ME , more severely than my daughter: some of the expenses mentioned above are from my own experience. However, I am not a drain on your pension funds, because I had income-protection insurance. You need to encourage people to take out and maintain this insurance. Now the cost of living has increased markedly, and so much work needs to be done to repair the damage done to worker confidence and job security by the Howard government, people will be taking out less income-protection insurance, not more. Find a way to encourage people paying for income-protection insurance, as you have with private health insurance. Just as private health insurance takes a lot of strain off the public health system, income-protection insurance will relieve your pension funds. Don't underestimate the future demand: look at the rate of increase of severe/long-term illness. Cancer is up to 1 in 3 in the Riverland, SA, where we live. Incidence of each of the neurological diseases has increased geometrically. Disabling allergies are more and more common. I can't say the insurance companies are pleased with any of this, either, but they seem to get away with having no actual responsibility towards the human race.
Thankyou for your time. :)
Clytie Siddall -- Renmark, in the Riverland of South Australia
Apologies if this email is badly written or difficult to understand: due to illness, the writer has cognitive problems, has great difficulty typing and is severely debilitated.
 Cluster outbreak at my workplace