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LISA... is a parent support and lobby group, for parents and families with a family member having an intellectual or multiple disability, and living in a supported accommodation group home in the State of Victoria, Australia.
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Monday, April 29 2013

Parents say:  “Who will care for our children?”

by Kirsty Stein, The Senior, Victoria – May 2013

Older parents caring for adult children with disabilities continue to be placed under growing pressure as services fail to answer who will care for their children when they are gone.

An Australian Institute of Family Studies report commissioned by Carers Victoria shows about 60,000 people aged over 65 are living with and caring for an adult son or daughter with a disability.

With more than 60 per cent of the country's 600,000 parents caring for a disabled child aged 35-54, that figure is set to climb significantly.

The value of services provided by informal carers exceeded $40 billion in 2010.

The estimated number of ageing parent carers of people with a severe disability almost tripled between 2003 and 2009, from 6400 to nearly 17,000.

The report, Ageing Parent Carers of People with a Disability, found while parents who had devoted a lifetime to caring for their adult child would like to plan for the future, they often were exhausted and confused by a complex system or could not access necessary services.

Planning services that are available are not linked to funding to assure people of secure housing arrangements for their child with a disability.

The study reiterated the findings of the 2011 Federal Senate disability and ageing inquiry which urged the creation of more interconnected and co-ordinated services for ageing parents and their children.

"With improvements in health care services and community support, people with a disability are likely to live longer and are more likely than in the past to outlive their parents," it said.

One in 10 father carers and nearly one in five mother carers over 65 were living on family incomes of less than $500 a week and, in general, the older the carer, the lower the financial resources.

Parent Lynn Loft, who spoke at the launch of the research in March, said she knew carers who had eventually relinquished their child to care after their pleas for help were ignored.

"One mother had a very high needs child and she was asking for a night's respite a week just to recover, and another 10 hours a week help," she said. "This is a very loving mother who had cared for her child all her life.

"Eventually when her daughter went into a house the mother couldn't believe it, because her daughter was allocated two carers who were with her all the time and they said one carer wouldn't be able to deal with her needs."

Mrs Loft said hundreds of thousands of dollars could be saved if flexible services were available to support older carers who wanted to continue to provide a home for their children and offer opportunities for them to remain in their own homes with family carers if they outlived their parents.

"For example why not pay $40,000 a year to a sibling or in-law who is willing to live in your house and care for your disabled son or daughter?" she said.

"They would spend $85,000 a year putting the person in a community residential unit, and more because that person would be happier staying in their own home and there would be fewer problems."

The Senior - Editorial Comment:   Being a parent is exhausting, and most feel a sense of relief when their children reach adulthood and take some responsibility for their own life.

For people like the Loft family and about 18,000 older parent carers around Australia, that relief never comes. They are on call 24 hours a day to cater for adult children with disabilities whose needs often become more complex as they age.

Lynn Loft has bravely spoken of her desire that her son Paul not outlive her. It's a wish no parent should have to voice, but it is born from the knowledge that there is no ability to plan a future for her son - the funding and the services are not available.

It's regrettable that caring parents seeking extra help, many of whom have previously not sought assistance, are being turned away because of a lack of funds.

Surely some flexible thinking is called for. A little more help now and a plan for the future will set their minds at ease, and lead to better outcomes for them and their children.

LISA Comment:  Bureaucrats have tinkered at the edges and re-named what has always been known as ‘Unmet Needs’ or the ’DSR Waiting List’. 

Call it what you will, it is ageing parents expected to live and provide care forever – never to experience their golden years without a caring responsibility.

The NDIS was intended to reduce the waiting list for those families seeking a supported accommodation group home or similar for their family member. 

With NDIS watered-down to little more than a shadow, there is little hope for those seeking more than a few hours of day service from the NDIS.   

Posted by: HATTON AT 03:04 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, April 23 2013
"Extensive outgoing correspondence is necessary to consistently challenge the the bureaucratic system, where responses are extensively issue avoidance, in-denial and manoeuvre every which way to avoid providing service intention" ....  LINK
Posted by: HATTON AT 10:23 pm   |  Permalink   |  0 Comments  |  Email
Friday, April 19 2013

Australians reaching their full potential through properly resourced education

ABC 7:30 Report, April 18, 2013 - LINK

Julia Gillard said:

I will make it very clear to premiers and chief ministers that this is a critical moment [Gonski reforms] to make sure that every Australian child gets the opportunity to reach their full potential in a properly resourced school.

I will be out there, not only talking to premiers and chief ministers about the importance of our children and properly funding their education, but talking to parents, schools, communities about it too.

LISA Comment:  “Hello, Prime Minister!”  “How about giving some consideration to many of those who are forced to leave the relatively well resourced special developmental schools as legal adults, but as children intellectually.  Those who very much need to continue the special and dedicated education provided by special developmental schools, but are forced into the little more than minder care of state funded day services?”

All the dedicated work of the education department teachers drops like a brick when their students, still children are, overnight, classified as adults with personal preferences which now have to have an adult focus to meet the funding criteria.

For someone with an intellectual operation level of little more than a three year old, meaningful adult activities are few, hence their day is mostly minder care.  Whereas, they very much need to continue the meaningful, dedicated and consistent special developmental school programs having just a slight angle towards adult needs

Posted by: HATTON AT 11:51 am   |  Permalink   |  0 Comments  |  Email
Tuesday, April 16 2013

Book Launch, 29 April, 2013 ... LINK

Parent activist extraordinaire says, “Writing my book has taken up an enormous amount of my life for years, along with fighting Flossie's battles…  DHS hate people like me, who won't go away!

Now it is time for me to become more active to help fight the cause for others. I cannot believe I am hearing so many horrendous stories - more than I ever imagined - all about the disgusting treatment our special loved ones receive at the hands of those paid to "care" for them…  I am hoping my book helps to put an extra focus on this”.

Posted by: HATTON AT 07:08 am   |  Permalink   |  2 Comments  |  Email
Friday, April 12 2013

The brain's task now is to reveal its own secrets

by Nicky Phillips – The Age, April 4, 2013

Over the past two centuries, modern science has charted vast quantities of our solar system and constructed detailed models of the invisible particles that make up the world's matter.

 But when it comes to understanding the human brain, a complex machine comprising 100 billion neurons that make trillions of connections, scientists have no map to guide them.

On Tuesday, President Barack Obama announced his "Brain Initiative", a bold new plan with $100 million initial funding" to conquer the body's most mysterious frontier.

"The brain initiative will give scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think, learn and remember," President Obama said at a White House news conference.

While project details and time frames were scarce, most pundits interpreted the goal would be to create a map of the brain's functional circuitry the highly sophisticated movement of electrochemical signals between neurons and synapses that underpin the body's transfer of information.

By understanding how information in the brain is stored, retrieved and used, scientists will hope to gain insights into brain diseases such as Alzheimer's, Parkinson's and autism.

The head of Neuroscience Research Australia, Peter Schofield, believed the project was an ambitious but worthy endeavour, much like the human genome project, which sequenced the building blocks of DNA, and has delivered significant research benefits.

"This will not be wasted effort; it will provide great new insights which will be quickly harnessed for the direct benefit of people and the conditions which afflict them," Professor Schofield said.

Decades of brain research and advances in brain imaging mean neuroscientists can pinpoint regions of the brain that drive basic human function such as speech, emotion, memory and fear.

What they are yet to understand is the finer detail of how each of those connections work and the exact sequence of events when a memory is created or the brain retrieves a phrase for speech, Professor Schofield said.

The human brain is a circuit comprising 100 billion neurons that make trillions of connections. Scientists will attempt to map part of this system.

Posted by: HATTON AT 10:02 am   |  Permalink   |  0 Comments  |  Email
Friday, April 05 2013
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