I saw the article also this morning and was saddened to see that the wait list is increasing. One of the things that impressed me so much when I moved to WI was how much better the state is at providing special ed services that what I was used to. No answers, just hopes that things will improve. jessica0: Thats awsome, its so horrible, u just done see many ppl like yourselfs out their basicly volenteering their expertise and time, this nation has a very big problem, the whole medical industry and everything that goes with it needs a serious change, we need many more like you out their!
More and more r being placed on the spectum, unfortunatly part of the problem seems their is not enough experts out their, causing waiting lists, too bad, cause the sooner u get um in the better they often are. I was unfortunate, never recieved anything, but then again, their was not a ton they could do, unless u were seriously impaired, i was only mildly so, so back when I was little in the 80's they just threw me and others with similar issues in special ed and that was that... I had to learn everything on my own, some can, some cant, makes me wonder how better off i could have been had this been different.
I really hate the whole inshurance thing in this country, for the medical industry, those middle class familes with kids affected seem hurt the worse, personally, because the rich obviously can aford, the poor get assistance, leaving the middle class family to have to morgage their home to aford to help their kid so they have a better chance at having a decent future, its really horrible.The waitlist is so heartbreaking. I work for three families who are paying out of pocket for services right now, and it's so hard knowing how long they're going to be waiting for the services that their children need. I have such a hard time with deciding what to charge, especially for my travel and the like (I've been screwing myself royally out of travel costs and the like, because I feel awful charging them...) It's all such a mess.
The program I work for allows the families to pay therapists directly, cutting their costs by about 80%, which is the reason why I do not want to work for another program-I truly feel the one I am working for is in it for the kids, and not the money. For what a familie would pay another company for 12 hrs a week (0), they could recieve upwards of 50 hours a week from ours. It's so disappointing to see that other providers are not willing to work with the families when they're put into these situations. (sorry...I sound like a brochure for my program...that wasn't my intention.)
I wish it wasn't like that, I wish everything worked out better than it does, these kids deserve so much better than they get.
I know there are longer wait lists in other states. However, Wisconsin is supposed to be one of the better states for services, and things are getting worse. I think there are a lot of parents in this country who can relate to the frustration of the parents profiled in this article.
http://www.autismkey.com/best_states_for_autism.htm
We live in California and according to the list ranked #2. Ours reallyThe following article was in the Metro Section of the Milwaukee Journal. It is primarily about the state's waiver program. However, autism and autism treatments are discussed. Also, the title indicates a year wait. Later in the article it says it's a 1 1/2 year wait, with a good chance of increasing to 2 years.
http://www.jsonline.com/story/index.aspx?id=639362
In the debate over early intervention therapy for Wisconsin's growing population of children diagnosed with autism - and who should pay for it - one thing is clear: Hundreds of children with autism aren't getting the therapeutic aid many medical experts say represents their best hope of attaining a normal life.
Although there is no known cure for autism spectrum disorders, or developmental disorders characterized by impairments of social functioning and both verbal and non-verbal communication, studies show that some children with autism are able to achieve near-normal functioning through a rigorous combination of speech, occupational and physical therapies.
But these therapies are expensive, and the waiting list for the state's popular Medicaid waiver program, which covers intensive therapy for autistic children, is up to 1½ years and counting. So some desperate parents are spending thousands of dollars.
Racine resident Hasmig Tempesta said she and her husband have spent close to ,000 on speech and occupational therapy for their son Zach, who was diagnosed with autism when he was 2 years old.
When Zach stopped responding to his own name, the Tempestas took out a second mortgage on their home to help pay for the therapy. They waited for more than a year to receive the waiver benefit.
"It was crazy expensive," Tempesta said.
According to the latest estimates, early intervention costs an average of ,000 a year for one child, and some providers say center-based therapy can cost significantly more.
The Department of Health and Family Services, citing a state budget deficit of .5 billion, said the state would lean on private insurance companies to continue funding the Medicaid children's waiver program.
"The number of children continues to rise," said Karen Timberlake, chairwoman of the 2004 Governor's Task Force on Autism. "The state can't do this all by itself."
Health and Family Services has proposed .4 million for intensive therapy for autistic children for the 2007-'09 biennium, a million increase from the previous biennium. But the plan allows only 200 new children to enter the program each year - 50 fewer a year than originally planned when the program began in 2004.
What this means for the nearly 300 children who have already been waiting as long as 1½ years to be seen by a therapist, some providers say, is that they might have to wait even longer.
Health and Family Services said it expects 250 children a year will make the transition out of intensive therapy, making room for new children, but Glen Sallows, who runs the Wisconsin Early Autism Project in Madison, said he expected the waiting period to increase to about two years.
"If there were plenty of slots open, why would people be waiting so long?" Sallows said.
With more Wisconsin children being diagnosed with autism, many, including state health officials, agree that the current turnover rate is not nearly enough to keep up with demand. The waiver program provides early intensive therapy to 1,745 autistic children. According to Health and Family Services, about 2,070 children will be in the program by 2009.
Maureen Durkin, a University of Wisconsin-Madison epidemiologist, said the health care system isn't meeting the needs of children with autism.
Families are "definitely in a bind," said Durkin, who led a Wisconsin study on autism prevalence that was part of a national study by the Centers for Disease Control and Prevention.
The Medicaid waiver benefit subsidizes 20 to 35 hours a week of intensive in-home therapy for up to three years, for children younger than 8. But these hours also include travel, supervision and team meetings, which parents say leaves less time for one-on-one therapy.
Furthermore, the only kind of intervention that has proved effective in controlled studies is early, intensive therapy for 40 hours a week, Durkin said.
Sessions with a behavioral therapist are typically two or three hours long, during which the child is asked to complete small tasks such as doing a simple puzzle. Through repetition and praise, the child learns social, motor and language skills. Children receive five to eight hours of one-on-one instruction a day.
A study of 24 autistic children from the Madison-based Wisconsin Early Autism Project in 2005 found that after four years of intensive therapy for 30 to 40 hours a week, the children's IQ increased an average of 25 points. Moreover, nearly half the children achieved average intelligence, according to the study's authors in the American Journal on Mental Retardation.
Early intervention is crucial because by the time children turn 6, their development is 90% complete, Durkin said.
Health and Family Services said families on the waiver list can get Medicaid coverage for some therapy and medical services, but many devoted parents have resorted to making out-of-pocket payments, digging into their savings to provide their children with the chance of getting better.
Sonja Bingen of Burlington said her family was "in a panic zone" when her son Joey was diagnosed with autism at age 3. Bingen said she knew something was wrong with Joey when he stopped talking and wouldn't make eye contact. Bingen doesn't know when her son - who turns 5 in September - will receive the Medicaid waiver benefit, but they have been waiting for almost a year. She and her husband have paid about ,000 out of pocket for behavioral therapy since last August.
"To see those years going by and have no one care . . . it's horrible," Bingen said.
Tempesta said that her son Zach, now 3, has been receiving intensive therapy for three months and has already improved by leaps and bounds.
"He can roll a ball back and forth and stack blocks end to end. Before, he would just knock the blocks on the floor and run away," Tempesta said. "When you think of autistic kids, (you think of them) slamming their heads against the wall or screaming. But my kid was just a happy kid that was lost."