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The North Dakota Department of Human Services Welcomes Feedback as it Renews the Autism Spectrum Disorder Waiver

IncreaseNote: America is a big country with 50 states. Every state has different services for autism. Some are pretty good, some are abjectly terrible.  North Dakota is reaching out for feedback on the ASD waiver, which stops at age 12. Our children do not miraculously find a cure at 13. They do not evaporate into the ether. They enter puberty and Katie bar the door. Life gets more challenging in the teen years, not easier. Sorry parents of young ones - it's the raw truth.

When I read about the explosion in autism and the lack of concern or the most basic journalism question, "WHY" I have a little trick I use to impart the gravity.  Just substitute another word for autism, heck use measles if you really want a scare... (sarcasm alert). Zinke adds, "The state is a very large place and Autism CANCER MEASLES CYSTIC FIBROSIS DIABETES LYMPHOMA MUSCULAR DYSTROPHY is getting more and more common."

From MyNDNow.com:

Autism is one of the fastest growing developmental disorders in the U.S. On average, it costs a family 60,000 dollars a year.

The North Dakota Department of Health offers an Autism Spectrum Disorder waiver to families who qualify.

As time nears for renewal of federal funding, the department is asking the public to voice their opinions.

Tricia Zinke and her son, Brody, spend a lot of one-on-one time together.

When Brody was diagnosed with Autism Spectrum Disorder four years ago, Zinke enrolled in services through the Department of Human Services.

Zinke explains, "We've been on the waiver now over three years, and he is just a completely different child. I don't really know what we would have done without it."

The service management portion of the waiver allows Brody to visit places like Poppy's Promise, where he can learn and socialize in a safe environment.

There are quite a few proposed changes, so I've highlighted a couple here:

Children would no longer have to be diagnosed by a psychiatrist or psychologist to be covered. 
Instead, diagnosis would be accepted from a longer list of doctors, practitioners and counselors.

Secondly, the number of service visits for families is decreasing from every 90 days to twice a year with the proposed changes.

In her comments, Zinke says the most important thing would be to extend the waiver past age 12. 

She explains, "That's kind of a key time for development in life, is when you start hitting those teenage years."

Right now, in North Dakota, enrollment is limited to 96 children.

Poppy's Promise Executive Director, Lorena Poppe says, "That really is pretty small as far as the number, when you consider the overall prevalence rate. One in 59 kids is born with an Autism Spectrum Disorder."

Zinke adds, "The state is a very large place and Autism is getting more and more common."



What are they wavering?

Jeannette Bishop

@Aimee Doyle, re the rate of regression, in the most recent Highwire show Del Bigtree discusses a study with Dr. Brian Hooker that followed from birth children with siblings with autism and found a rate of autistic regression (among 32 of all followed that were eventually diagnosed with autism) of 88%:


Aimee Doyle

@Bob - "silly old me" - well, "silly old me" too. My son regressed into autism between ages 2 and 3. My son - like your grandson - was certainly not born with autism. I remember my son's lively, enthusiastic smile. He loved people, he loved life. After autism struck, he didn't smile again for years. He didn't talk for years, and even though he's verbal now, it's not like he can hold a conversation.

I wish that we had better numbers and some (at least approximate) breakdowns. Certainly some kids are born with autism. Others definitely regress into autism. Would be nice to know how many of each there are - what the prevalence is for autism at birth versus regressive autism. Seems it would provide insight into appropriate cause and treatment.

Of course, the line between birth autism and regression autism is being blurred, what with flu shots being pushed on pregnant moms, and HepB at birth. Maybe it's not possible to get an accurate read anymore.

While I'm on the subject, it would be good to have a sense of how many kids with autism have Asperger's, HFA (high functioning autism), are moderately functioning, or a low-verbal or nonverbal. Each group has different needs for treatment and therapy. Even large, general categories would be more helpful than the one spectrum word we have now -autism.

bob moffit

"Poppy's Promise Executive Director, Lorena Poppe says, "That really is pretty small as far as the number, when you consider the overall prevalence rate. One in 59 kids is born with an Autism Spectrum Disorder."

Would love to ask Ms Poppe "why" she believes the overall prevalence rate .. which she claimed is "1 in 59 kids" .. are suddenly being BORN with autism? I think a more accurate statement would have been .. one in 59 kids are being diagnosed autistic .. rather than saying they are BORN with it.

But, then again .. that's just silly old me stubbornly questioning the idea that children who "regress" and become autistic .. were not BORN that way .. something was introduced into their environment that "caused the regression".


Only 96 kids!!!! Do they mean 96 kids for that one township, or county , or school, or area in North Dakota?

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