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Autism Waiver Cuts Spell Catastrophe in Indiana

Fate Editor's Note: Steven Higgs, who runs the excellent Autism and the Indiana Environment blog, has written a powerful piece on how "impending cuts in the Medicaid Autism Waiver will devastate the lives of Indiana citizens with autism and other disabilities who receive services under the federal program," humanizing the situation by telling it through the life of one young adult with autism and the "direct support professional" who is trying to help him. It's the kind of thing that more and more states, individuals with an autism diagnosis, and outreach agencies are facing every day.

Autism Waiver cuts spell catastrophe in Indiana
By Steven Higgs

If you think you're going to hike with Ron Habney, you'd better be prepared. The 6-foot-tall, 130-pound, 25-year-old treks an average four to six miles a day on some of the most challenging trails in Southern Indiana's Upland regions. Not everyday, to his chagrin, but multiple times a week. Last summer, on one 96-degree day, Ron hiked 9.4 miles through the Charles Deam Wilderness Area in two hours and 20 minutes.

So says John Willman, who knows. He's been Ron's hiking companion and caregiver for almost eight years now. "He's truly an athlete," John says of Ron. "His hiking skills are almost unmatched." Beneath close-cropped, thick, black hair, Willman's blue-green eyes beam proud-parent-like as he recounts Ron's on-trail achievements. But they're just a footnote to this rainy-gray November afternoon interview.

Ron has autism, and John, who is not Ron's parent, is preoccupied with his fate.

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Talked to my sister-in-law this morning.
Told her about the Hep B shot and what it was for, and when it is given, and that her son should know this is coming.

Reminded her her son has three brothers that have autism and he as a new father needs to step up and fight for his son's mind. That not only means the Hep B but the whooping cough vaccine too.

My sister-in-law says she is just a grandma, and they will do whatever the doctor tells them too. Oh God!

My sister-in-law complained to me today that she can no longer leave the house to travel - something she loves to do, because of her three grown boys.


Willie I will pray for you.
School - was stressful.
I can honestly say that I; not the school taught my son to read and read well.
I would read and made him follow alon, if he failed to know the place then he had to read. I also would stop ever so often and asked my son to briefly tell me what was going on in the story.
We read all of the "Lord of the Ring Books" which is I think difficult and we kept a dictionary close by.
One summer we read all books about dogs, had a theme going: "Call of the Wild", "Ol'e Yellow", "Where the Red Fern Grows", "Sounder".
My son reads with understanding very well.
It took me to teach him science (I am a science teacher) I and not the school taught him the laws of physics, it was me that taught him trig. It was his father that taught him chemistry in high school-- so well that he was able to go to school and help his classmates!!! Math, I don't know what is is about math, he cannot retain it for some reason, but we have taught him math over and over again and have gotten him through math classes, even college math classes- although he had to take several of them twice. He just does not retain math!!! He can learn it but it won't stick. So don't get frustrated, find a quiet place,weekends, holiday vacations, and summers takes away the feeling that there is only a limited amount of time to learn which makes learning more enjoyable.

As far as my nephews goes, I have talked the talk forever. My sister-in-law up untill two years ago thought that her 3 out of 4 not normal boys were really going to turn out normal in the end. She finally sees this is not going to happen. She finally got it - that these vaccine reactions can happen in just a few minutes and then the baby goes to sleep like nothing happens (at least in my case) and that she could easily have missed it.

But they are also living in Forrest, Miss. My sister-in-laws house burned down and they rebuilt only two years ago, the house that these newly wed with baby on the way - are remodeling as they go along. They are cabins!!!!!! Made of wood, that might be still socked in ethyl mercury. Do they still do that?




All of the children are born normal, the vaccines give them autism, simply tell your cousin not to give any vaccines and that they will avoid autism that way. I just had my first visit with mychild and wife with Dr. Kartzinel and he is clear about the role of vaccines in autism. The other well known physician in town who has published books on vaccines and autism did not vaccinate his children, and I suspect many know the truth and do not vaccinate and keep the truth to themselves like true cowards and hypocrites, and yes they will burn in hell for it.

Just tell your cousin not to vaccinate and the baby will be fine, just fine. I will pray that you do that AND that they listen. I read many of the post you write and I often think of many of you and your struggles. I struggle too, big time as their is no joy in my life none.

My heart is broken and I cannot yet put it back together and I am asking God to help me too. I am not able to consistently encourage my daughter without me getting frustrated and her getting emotionally crushed when we do homework. I know that it is bad for her emotionally and psychologically and it is not her fault clearly but I am afraid for her, truly I am.

It gets bad I know it is bad but I have not been able to change my approach consistenly yet because my personality just comes out.

Please pray for me too Benedetta

Thank you


Theodora Trudorn

And those adults like me, with AS, remain in the most part invisable and behind closed doors. With no help and no hope in sight excpet those like me. I'm rather tired of waiting on the politicans and the service system to do what they should.

I am taking things into my own hands and finally putting into motion an idea I have had for quite sometime. Get older aspies, those who have been out in the world and are sucessful (have to live on thier own, have steady jobs, etc) to mentor younger ones.

I would have it where the mentor, a facilitator, a parent, and the person on the spectrum meet together once a month to discuss how much time each week the person will need with the mentor, on what issues the mentor should work on with the person on the spectrum, and talk about what is working and what is not.

They would work off of the Person Centered Planning model. I have found that aspies understand one another far more than we understand NT's. We understand how one another best learns. So it would be far easier for a aspie to learn from another aspie than to learn from a regular person.

By setting this in motion, it would give aspies the help we so desperately need, and we would be able to do it outside the service system, so no child would be denied because they are not "disabled enough". *rolls eyes*

We can't afford to wait on these people any longer. Something has to be DONE!


Well, I worry about my one son, and it is worry enough. We are lucky, he has a lot of college classes behind him, even though he is ohhhh who knows but recent psych say he is PDD-NOS not aspergers. I have no idea.

But I am far better off than my sister-in-law. She had four boys and only the oldest is normal. None of the others can keep a job except one of the youngest twins. He got a job moving furniture for the school system. The whole family rejoiced, they said he had health insurance and some day an little bit of retirement income.

He has had it for four years now.

This week, a little before Christmas they fired him. He was on one of their computers looking at bad things.

I believe in taking responsible for bad behavior, but the school system should have known that he has an IQ of 69 and had a disability.

The whole family has been so beat up - There is never any good news coming from that family, not ever!

Well, her oldest son is expecting their first grandson. Since when does a whold family just dread such good news of a continuation of the next generation? Will you all pray that it will be normal?

Autism and Anti-Vaccine Advocate

Dear Steven Higgs:

I read your article on the blog about Ron Habney. Our son was vaccine damaged and has regressive autism along with severe aggressions. He lives in an out-of-state residential center in Delaware and is on SSI and Medicaid. We were told that our son could only get residential services in Delaware, Pennsylvania or as far away as Texas but not in NJ where we live.

Attached is information from Social Security on the number of children/adults with ASD on SSI nationwide as well as the Dept of Education nationwide figures on children ages 6-21 and 3-5.
I hope to get updated figures on both in January 2011.

AS OF DECEMBER IN 2002 - 2008

As Of December In Year Children 21 and under Adults 1/ All Recipients

2002 38,324 7,360 45,684
2003 44,076 9,282 53,358
2004 51,581 11,450 63,031
2005 59,479 13,647 73,126
2006 68,050 16,190 84,240
2007 76,448 19,139 95,587
2008 88,734 22,993 111,727

_______________ _______________ _______________ _______________


Yearly increase in the number of children with autism age 6-21 in US Schools Since DSM IV (1994 to present)

School Year Students Increase
1994-95 22,780
1995-96 28,813 6,033
1996-97 34,082 5,269
1997-98 42,487 8,405
1998-99 53,561 11,074
1999-00 65,391 11,830
2000-01 78,717 13,326
2001-02 97,847 19,130
2002-03 118,603 20,756
2003-04 140,920 22,317
2004-05 166,302 25,382
2005-06 193,481 27,179
2006-07 224,415 30,934
2007-08 258,095 33,680
2008-09 294,302 36,207

Increase in the number of children with autism Age 3-5
(2000 to present)

School Year Students Increase
2000-01 15,581
2001-02 17,032 1,451
2002-03 19,017 1,985
2003-04 22,724 3,707
2004-05 25,902 3,178
2005-06 30,276 4,374
2006-07 35,071 4,795
2007-08 39,434 4,363
2008-09 45,166 5,732

Concerned Mom

Just like the education system can't take care of or protect autistic students, government will not be able to take care of or protect the growing population of young autistic adults. Right or wrong, whatever one's political beliefs might be, for whatever reason, it's simply not going to happen. Families of autistic children are going to be forced to deal with it alone.

Anne McElroy Dachel

We have somehow adjusted to having autistic students in every school. Reports are out regularly about abuse of these students by staff members with no training or experience in dealing with autism.

The adults are coming

With budget cuts everywhere, I can't imagine what corner of the system autistic adults will be forced into. Again, no one ever asks where they're all coming from .

Anne Dachel

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