Desperate Disability Decisions
There are those who have, and those who don’t have
Those who have, are often complacent. Those who don’t, are often desperate
Most children grow to become self-sufficient adults and leave the family home so parents finally get their home to themselves to enjoy retirement.
Parents with a family member with a disability consider themselves very lucky if they can get good respite from a lifetime of caring for their member with a disability – respite such as a good group home or similar.
In total contrast, there are those families where very elderly parents remain caring for their family member at home, with no hope of doing otherwise but for the parents to depart this world.
Often parents become so desperate with the stress and strain of 24/7 care, getting no younger and what will happen to their family member when they are no longer around or able, they are forced into desperation mode – to abandoning their family member in a hospital, respite, service provider offices, etc, knowing that only then will authorities make a service available.
Concern was recently mooted an alternative may be considered by those families so desperate as to try anything. This alternative was reported by The Age, 21 April 2014, of a cheap nanny scheme. At present debate is about how to best fill the childcare gap in Australia - This could easily turn into how to cover-up the un-met needs gap in disability services by a cheap nanny scheme.
What Bruce Bonyhady, chairman of the NDIA, says in The Australian, April 24, 2014, provides little hope the NDIS (Disability Australia) will help current elderly parents doing it tough in still caring for their family member at home, with little or no real relief in sight.
Mr Bonyhady says, “The NDIS is the Snowy Mountains Scheme of economic and social policy and, like the Snowy Scheme, it will take years to build and get right. The NDIS stands as a beacon of hope for the hundreds of thousands of people with severe disabilities and their immediate family members - the NDIS is a once-in-a-lifetime opportunity that must succeed”.
That the scheme is once in a lifetime and very dependent on a myriad of political and economic possibilities, shows the low priority rating of people with a disability in Australia compared with those in Scandinavian countries.
The Herald Sun economic opinion, April 4, 2014 says the Australian economy is in deep waters. The nation is in dire straits. Unless direct action is taken, the standard of living will fall.
The average citizen will not look kindly at more social service costs when they, themselves, are struggling to make ends meet with the ever increasing house prices, energy costs, school fees and poor employment opportunities - to say the least.
JacksonRyan Partners say, “A good measure of success of the NDIS would be to look at the 15-24 year old young Tasmanian people now entering the scheme, who will then be 40-49 years old, and see if their parents, like today’s ageing parents, are worried sick about what happens to their child with a disability after the parents die. And also to look at the 0-14 year old South Australians now coming into the scheme, who will then be 25-39 years old, and see if their families have an “ordinary” life, whatever that may be, or if life in their households revolves around the routines of the person with a disability”.
Parents say disability scheme failing to deliver support promised, ABC News
Parents of disabled children say the National Disability Insurance Scheme (NDIS) is failing to deliver what was promised.
It was launched nearly 10 months ago at five trial sites across Australia, and in South Australia has a focus on children up to the age of 14.
But some parents say they are feeling ambushed and confused as they try to negotiate the bureaucracy.
LISA Summary: It is extremely frustrating dealing with bureaucracy to get a realistic and meaningful service: It can be equally frustrating dealing with the service after acceptance. Those of us lucky enough to have a service, need to do our best to ensure it is as good as possible for those who may eventually get a service.
Services should be quality of life care and support, not minder care.
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