Autism news
ACT Parent warns private providers not ready for National Disability Insurance Scheme (NDIS)
A 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 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.
USA:Federal Officials Order Medicaid To Cover Autism Services
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."
Incredible report: Autism rates steady for the past 20 years?
ABC Radio National reported on a disappointing journal article that claims there is no evidence that the number of people with autism has increased since 1990. The stories are:
Disabled call in lawyers to access NDIS
Dale Mulligan of Newcastle, denied $1100 a year to pay for lawnmowing, is taking the NDIS to the Federal Court. Picture: Jon Reid Source: Supplied
AUSTRALIANS with disabilities have begun suing the government to break into the National Disability Insurance Scheme, forcing courts and tribunals to navigate the scheme’s early flaws.
Administrative Appeals Tribunal hearings have so far revealed confusion about the NDIS legislation and heard participants were given incorrect information about their entitlements.
One man with emphysema and diabetes was incorrectly told the NDIS would provide an oxygen concentrator and insulin pump, while another was given the wrong information about his avenues for appeal.