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Online video: NDIS planning for adults with severe autism/ASD in the ACT

By bobb |

In this video Bob Buckley describes his recent experiences with National Disability Insurance Scheme (NDIS) planning. His advice tries to help others prepare for their transition to the NDIS. He suggests that people can reduce their stress over NDIS planning if they better understand the processes and likely outcomes.

Bob Buckley's son (who is 23yo with severe autism) has one of the earlier NDIS plans approved in the ACT. The process took 11 days and delivered substantially more support/resources than was previously provided. The plan is much more flexible than the previous arrangement.

Doubt on future of autism care centre

By bobb |
Autism Specific Early Learning and Care Centre manager Kathryn Fordyce spends one-on-one time with Jethro Goodwin, 5. Picture: Grant Wells.

Autism Specific Early Learning and Care Centre manager Kathryn Fordyce spends one-on-one time with Jethro Goodwin, 5. Picture: Grant Wells.

By EMILY WOODS, Oct. 10, 2014.

THE only regional autism early learning centre in Australia is at risk.

There are questions around continued government funding of the Burnie Autism Specific Early Learning and Care Centre [ASELCC] and the Burnie City Council has confirmed it cannot continue its support of the centre.

‘‘It’s a really tight fiscal environment and you don’t know what might get the chop,’’ ASELCC manager Kathryn Fordyce said.

Research into the success of the centre over the four-year period of federal funding is being undertaken by the University of Tasmania Rural Clinical School, but it looks like the research may not be completed in time to influence the government’s decision.

‘‘The timing is not great in terms of using the data from the research to influence the government’s decision,’’ Ms Fordyce said.

‘‘We’re due for review in June 2015, we would expect that they’re going to make a decision on the service before we’ve got any results of our study, unfortunately.’’

Ms Fordyce said the positive feedback they had received from families, schools and the education department proved that ‘‘the service provides such a critical support to families’’.

Venerable Canberra bush band supports Autism Asperger’s

By bobb |

Part of the movable feast that is Canberra's Franklyn B Paverty

Well known Australian bush band Franklyn B Paverty celebrated its 40th anniversary with a fundraising performance at one of Canberra’s original hotels this week.

Paverty returned to its spiritual home, the Ainslie Hotel, more recently known as Olims and now the Mercure, for a performance in front of diehard fans, with proceeds going to Autism Asperger Advocacy Australia.

Paverty’s bass player of the past 14 years Bob Buckley is convenor of the volunteer advocacy group, so what better cause could there be?

The band has recorded and performed around Australia – from the opening ceremony for the new Parliament House in Canberra to music festivals nationwide.

Service provider view: Adelaide Fee Structure and NDIS Philosophy

By bobb |

AEIOU Foundation has adapted its service model delivery to best support families under the NDIS trial. For information about AEIOU Foundation’s fee structure in Adelaide, click here.

AEIOU advises the aforementioned fee fact sheet does not cater to individual family circumstances and all families should contact our Parent Liaison and Fees Coordinator for specific information.

Background

AEIOU Foundation was established in 2005, and operates nine centres across Queensland.

ACT Parent warns private providers not ready for National Disability Insurance Scheme (NDIS)

By bobb |

autism ... jumping hurdlesA Canberra carer says private providers are not prepared enough to take over the ACT government's early intervention programs for children with disabilities in January.

In April, the ACT government announced it would be withdrawing from early intervention programs in Canberra at the end of 2014 as part of the National Disability Insurance Scheme, leaving some parents concerned that children with disabilities could be left in limbo.

Canberra mother Tracey Trewhella, whose three-year-old daughter, Hailey, suffered from global development delay, said she didn't believe there would be enough private providers to cover the ACT government's withdrawal from the sector.

At the Early Intervention and Therapy Services Expo on September 13, Ms Trewhella said out of the 50 staff holders who attended, only five intended to run an early intervention program in the ACT, two of whom didn't currently have a presence in the territory.

WA study finds Autism sets back families $35,000 per year

By bobb |

Families of children with autism are facing tens of thousands of dollars in costs and lost income, a Western Australian researcher has found.

The study — thought to be the first of its kind in WA — set out to measure whether a delayed diagnosis increased long-term costs for families.

But the paper, published in this month's edition of journal PLOS ONE, also established the median cost of a child being diagnosed with autism as $34,900 per annum.

Curtin professor and joint author Torbjorn Falkmer said the findings, drawn from the responses of 317 Western Australian families, had huge implications for parents.

"The majority of that cost, 90 per cent of it ... is because of the lack of the chance to have employment because parents have to stay home and take care of the children with autism, because they don't get the support they need," Dr Falkmer said.

"I think the system we have right now is showing us that parents are being forced to stay home, because they can't take a job because someone's got to take care of the kids.

Strapped in and locked up: Shocking photos reveal how autistic children are treated in Australian schools

By bobb |
  • Tracey Hayes has photos of her twin boys strapped to chairs at Monash Special Developmental School in Melbourne
  • Other parents of autistic children have also made complaints about how their children have been treated in Victorian schools
  • Rebecca Cobb claims she was forced to pull her autistic son Tristan out of Marnebek school, in Cranbourne, because he was repeatedly locked in a small dark room

ABC RN Life Matters: Re-defining autism

By bobb |

Autism Spectrum Disorder is a condition that is currently diagnosed in one in 100 Australians.

But it wasn’t always called autism, it used to be called “childhood schizophrenia”.

And while it’s true that language has changed, what about perceptions?

Listeners share their experiences of having a child in their family with autism.

How have things changed through the generations?

see http://www.abc.net.au/radionational/programs/lifematters/re-defining-au…

USA:Federal Officials Order Medicaid To Cover Autism Services

By bobb |
 

State Medicaid programs now have to cover a range of treatments for autism.

When Yuri Maldonado's 6-year-old son was diagnosed with autism four years ago, she learned that getting him the therapy he needed from California's Medicaid plan for low-income children was going to be tough.

Medi-Cal, as California's plan is called, does provide coverage of autism services for some children who are severely disabled by the disorder, in contrast to many states that offer no autism coverage. But Maldonado's son was approved for 30 hours a week of applied behavioral analysis, a type of behavior modification therapy that has been shown to be effective with autistic children, and she was worried that wasn't enough.

So she and her husband, neither of whose jobs offered health insurance, bought an individual private policy for their son, with a $900 monthly price tag, to get him more of the comprehensive therapy.

"I don't know any family that can really afford that," says Maldonado. "We made some sacrifices."

That should be changing soon. In July, the Centers for Medicare & Medicaid Services said comprehensive autism services must be coveredfor children under all state Medicaid and Children's Health Insurance Program plans, another federal-state partnership that provides health coverage to lower-income children.

The new coverage guidelines apply to children with autism spectrum disorder, a group of developmental conditions including autistic disorder and Asperger's syndrome. Roughly 1 in 68 children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The Association of Maternal Child Health Programs estimates that just over a third of them get coverage through Medicaid or CHIP.

Although coverage of applied behavioral analysis, which uses positive reinforcement and other techniques to encourage behavior change, isn't explicitly required, advocates expect it will be covered.

"Since ABA is the most accepted, effective treatment that isn't experimental and investigational, you can't just exclude it entirely," says Daniel Unumb, executive director of Autism Speaks' legal resource center.

"It's going to help a ton," says Maldonado. "We'll be able to pay our rent on time, and we'll be able to pay some bills that we have."