Disability Care and Being Cautious….

Disability Care has been voted on and Australians all over are rejoicing in the news that everyone with a disability will have their needs met by 2020.  It is indeed, fantastic news, and Australians have every right to not only feel proud of their advocating efforts, but to feel just that little bit safer in the knowledge that people with a disability have hope of better care.

One thing concerning me however is the continued cost of medical care.  Disability Care will not help with medical costs, and medical costs are largely prohibitive to people with disabilities and chronic conditions on low incomes, especially those on the Disability Support Pension.

Sure, having a pension card helps with some costs: Prescription medication is a LOT cheaper, and some medical professionals continue to bulk-bill pension card holders.  Only some medical professionals though, mainly GP’s; seeing a specialist still costs upwards of $50 to $100+ per visit.  If you are a low income earner, and your disability requires regular specialist appointments, then you have some very hard decisions to make.

People with disabilities living in rural areas have more of an issue, as seeing a specialist often requires expensive travel costs as well.

A person with a rare type of Ehlers Danlos Syndrome (EDS) can expect to need to see the following specialists at least once a year for a check up or possibly many times a year (up to weekly for therapy): rheumatologist, neurologist, endocrinologist, gastroenterologist, ophthalmologist, allergist, orthopaedic surgeon, cardiologist, sleep specialist, dietician, occupational therapist, physiotherapist, pain specialist and psychologist.

It is not uncommon for someone with EDS to require 3-4 medical appointments a week.

What is uncommon is finding someone with EDS who can afford to have 3-4 appointments with a medical professional a week.

Ehlers Danlos Syndrome is a degenerative condition.  Over time, symptoms get worse.  For some people this means very little, however for others, the degeneration can come swiftly.  As the disease is so rare, diagnosis may not come until well after disability has settled in for good.  People with the syndrome may spend years thinking that “next year will be better” and even go into debt believing that they need the money now and they will pay it back later when they go back to work – only to never return to work.

As EDS is a genetic condition, quite often children also suffer from it and so expenses for the family are doubled or tripled or more.

Gap fees in my own experience range anywhere from $30 to over $150 with a pension card discount.  Given my current condition, my medical fees this year should be around $900 for the specialists I would see once or twice a year.  Add onto that $450 for travel costs as I have to travel to them.  It would cost around $200 each to see a pain specialist and dietician every 3 months.  An occupational therapist would cost around $500 for the year, $8320 for a physiotherapist, and $2320 to see my psychologist.  These costs already take into account Medicare rebates – this is my out of pocket expense.  Grand total is $12890 for the year, or $248 per week.  That is nearly as much as my entire pension.  And my two children also have EDS.  We were all diagnosed together last year.  Four years after I became disabled from the condition.

Instead of paying for these services, I use Dr Google instead, and see my GP when I need to have any testing done.  I have no choice.

The Medicare Benefits Schedule is vastly inadequate, and gap fees have been growing as the years go on.  Many services are not covered at all, or some, such as psychological services, are only covered for a pathetically low number of visits per year, with clients expected to pay the full cost after those sessions have been utilised.

Privatisation is not working so well for the poor when it comes to Medicare.

People with disabilities still have much to fear even if Disability Care covers 100% of costs for the full requirements of an individual.

Some advocates, people with disabilities and carers are presently worried that Disability Care will not cover certain types of disabilities, or certain types of care.  There has been nothing to suggest that this is the case, however until it is fully rolled out and people are assessed, there is no way to ascertain how well the system will work in these respects.

I believe we have another issue to be concerned about when it comes to Disability Care however, and this concern does have a basis in history.  If Disability Care is to be partnered with Medicare, does this mean that similar schedules for services will be put in place – if not now, then at some stage in the future?

Will we see a day when people with a disability are told that they are eligible (for example), for 20 hours of support care per week at $30 per hour, when that service actually costs $40 per hour, and the person with a disability or their family (if they have one willing) is expected to pay the difference?

For those people who cannot afford to pay the gap fees, Disability Care may as well not exist, just as Medicare may as well not exist for some people today.

Gap fees within the scope of Medicare are an issue for low income earners with disability for two reasons.  The first is that people with a disability cannot afford them, and their health and conditions are suffering for it.  The second is that is sets a dangerous precedent for Disability Care in the future.

Rejoicing the passing of Disability Care is great, and we should take some time to reflect on how this has changed the lives of people with a disability forever.  After our sabbatical however, we need to continue being vigilant, and ensure that gap fees are never an issue for the scheme, lest we allow it to be rendered useless to those that need it most.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health
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Pissed off since 1995. Mad as a hatter since way before that.

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