"It seems to me that Michigan is breaking a HUGE Federal Statute in regard to Autism" What do you think?

My letter of concern, I sent to Rhonda Brunett in need of someone or some kind of direction or assistance:

This e-mail ended up being a whole lot longer than I'd originally intended.. I'm sorry. Please read anyway..?

Hi Rhonda,

I spent a lot of time reading your blogs on the Autism One site last evening, and I even responded to one (hoping it went through). I occasionally got the impression, as I read, that Jordan and Alex were maybe one and the same kid..lol. Alex just turned 15, is affected by Autism/Aspergers, and since he entered middle school our lives have been dumped upside-down.

One of the things I'd noted in one of your blog entries was that we share the opinion that school districts: administrators and teachers are quite UNKNOWLEDGABLE in regard to Autism Spectrum Disorders. They don't seem to know the slightest things regarding how a person is affected, nor how to help these kids or adults. My thought right now is: "Are they just plain STUPID, or what????" Or, if they're really not stupid.. have the school administrators, etc., just have their heads so far stuck in the mud (and perhaps believe that all ASD students are to be exclusively serviced in Spec. Ed. classrooms), that they just don't care whether or not they enlighten their staffs????

It's very much appearing to me that the only persons who do know about ASD's, their challenges, their needs, and their gifts, are the staff that the school districts are required to have on their staffs; psychologists, Spec. Ed./ Resource Room teachers, and the social workers. <-The social worker within
my son's high school also seems to not have a clue. It's either that or she's faking ignorance, (which could be the case too I guess).

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I'd been called to the school this past Monday, 9/28/09, by the school social worker. She called me at 11:00am, and asked me if I could be there by 11:20 - 11:00 (it takes 20-30 min. just driving there).."Of course I can, and I'll be there right away". It seems that my son had had a meltdown of sorts at the
school (anxiety). This meeting that morning included the social worker, Alex's guidance counselor,
and the sophomore assistant principal.

The first thing out of my mouth after introductions was: "I'd expected this situation with Alex to happen today, and was almost hoping for it. Thank you for calling this meeting". I then put my formal letter for
Alex to be evaluated by the school on the table and drew all of their attention to it. I then addressed Alex's guidance counselor, and asked if she recalled the e-mail that I'd sent to her a few weeks ago, outlining that he was affected by Aspergers Syndrome, and asking for an appointment so that we might discuss how we could both help Alex at the high school. Yes, she'd remembered it.

In her reply to my e-mail, I'd gotten the impression that she was obviously trying to brush me off. Yes, she did get 'fill ins' from the guidance counselor at the Freshman Center regarding several students before they had transitioned to the high school, but she hadn't heard anything from any of Alex's current teachers about his having a problem so she hadn't spoke with Alex. If Alex is having any problems, I'm sure I would have heard about them; And what problems has he encountered that I may help with? (Okay, maybe the guidance counselor was playing dumb too, because it seems a bit ridiculous that she would not know
about ASD's.................arg-g-g.........). She'd, after that, pretty much gave me the brush off, as if she
didn't have the time..

Next, at this meeting, the social worker spoke up, and was questioning reason for Alex's anxiety this morning, the reason that Alex has many 'gloom & doom' replies to several questions on his homework.
AND, whether this was going to be something that Child Protective Services (CPS) needed to be brought
in on. (Appearing as un-ruffled as possible in light of the circumstances..) I asked her how much did she know about Alex and the fact that he is affected by Autism Spectrum and/ or Aspergers. AND was she aware that persons with these disorders also have anxiety problems, and tend to be drawn to 'gloom &
doom' areas naturally. AND was she also aware that both 'anxiety' and 'gloom & doom' ideas in Alex
might also be due to the bullying, and the humiliation that he has been subjected to on the school front; which has been brought to the schools attention. None of it being dealt with; as I have kept documented.
Her 'tude changed about then.. Sheesh..

"Furthermore, I have tried and tried to get someone, the school as well as any ethically minded doctor, to really look and see my son as a human being, note/acknowledge his gifts and needs for quite a while now, and QUIT brushing him off. If you feel the need to bring CPS unjustly into our lives again, you should probably also know that CPS has already been on our door a number of times over the past few years, they've done their investigations, and on every occasion have found the initial allegations to be unfounded. In fact, the last time, the investigator took me aside, shook my hand, and told me that in his opinion, I was a good mom.. And I might want to pursue the 'harassment issue' from those who keep insinuating that I am a bad parent."
(Btw, when I'd mentioned this to a friend of mine who works in the mental health field in another state,
he'd told me that it's normal for the school to bring Child Protective Services up to parents who are asking
for services for their children; it's meant to scare the weaker parents off. And he'd also told me that I'd handled it very well.).

Okay, the school had my formal request for Alex to be evaluated. I then also mentioned that 3 medical doctors, 3 Ph.D. psychologists (including Dixie N., their school psychologist), and 2 therapists had ALL
very much agreed that it was mighty evident that Alex is affected by Autism/ Aspergers, and yet not a one
of them would put it on paper for us. One of those medical doctors went so far as to flat out refuse to diagnose Alex with an ASD; "He'll have problems getting insurance when he's an adult!". Note: I'd subsequently asked that one just exactly whose payroll he was on, and he escorted me to the door...... (..oops). In my opinion, what those professionals have done is abuse/ negligence, and they'd all sworn to aid in the alleviation of pain and suffering to the extent of their abilities!
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After signing a 'release of information' so the school might be allowed to correspond with our family doctor, Alex and I left the school. I'd informed those in that meeting that my next stop was going to be to our family doctor's office. Our family doctor and I had been discussing Alex's situation at school for quite a while, and on the previous Thursday (9/24/09), he'd heard what I had been encountering again from the school in their quest to block every one of my attempts to secure some accommodations/ services for Alex. He'd told me to have the school call him, and he'd do everything he could to help.

Alex and I stopped at our doctor's office on the way home, and I left a letter of sorts, telling him: what had just happened at school, and once again, I outlined the criteria that Alex exhibits that would allow for an Autism/Aspergers diagnosis (briefly this time).

The next morning I got a call from his receptionist, informing me, that our doctor thought that Alex
needed a psychiatric evaluation; His receptionist then proceeded to give me the telephone number for the very same insurance company that he'd gotten a 'formal denial' from (this past Spring) when he'd tried to secure the funding for the neuro-psych evaluation that I'd suggested for Alex, to gain the needed 'formal diagnosis'.

"Excuse me, have you guys forgotten that insurance has already turned down that request a few months ago?" And when I told this receptionist that I'd like to make an appointment with the doctor, she turned me down cold. She told me I'd have to try to get Community Mental Health to help then. Duh...... they had
also forgotten about what Community Mental Health had dished out to us, also, this past Spring, and the subsequent formal complaint, and investigation that had taken place.

A state official that I had questioned about CMH's policies, had started the complaint process with 'recipient rights', on our behalf. But then, he promptly dropped the ball afterward. The investigator, (the final report showed), had completed each of the interviews only by telephone; he didn't look at any of the
records/ evidence that was documented therein, to back up what I had alleged.
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Okay-y-y...... This past Thursday, I had an appointment at The ARC, their Program Director. I told the director all that we had been through, thus far, and what was now going on with the school, (and the fact that I had submitted the formal request for an evaluation to take place). Outside of now playing the waiting game, I also asked her how I could attain being given the opportunity to speak with each of the schools evaluators beforehand, so I might be allowed some input into their evaluations (Alex's history, family history, signs and symptoms that he's shown throughout his life, and signs and symptoms that have very much worsened since puberty/ middle school, etc.). It seems that I have to send another 'formal request'
for that too..no problem.

I was also told that some of the entitlements that I know Alex should be allowed due to his disability are
not law in Michigan. Also, that even after the evaluation, the school evaluators, whoever they might be,
are not allowed to diagnose Alex, which will put us right back at square one.

Doesn't federal law take precedence over state law? And because Alex is obviously affected (according
to all who have denied us a formal diagnosis too), aren't there any protections that I can quote in regard to IDEA, Americans with Disabilities Act (ADA), and the Rehabilitation Act?
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The school has repeatedly informed me that Alex does not qualify for Special Education services because he continues to get excellent grades. He's read fluently since just before he turned three, but he's lacking in the comprehension skills. Like Jordan, Alex is forever trying to write down every fact that he possibly can and usually memorizes the study guides he's sometimes given. (This is the only reason that I believe that he's getting excellent grades). Give him facts and expect him to form a conclusion? About impossible. PLUS, he has sensory processing PROBLEMS! The lights, the sounds, etc., make him NUTZ!!!! But he usually doesn't max out and crisis until he's safe at home.

Alex also has large and fine motor problems, which affect his ability to function well and/or be accepted in gym class; "Mom, why is it always when they're picking teams that I'm the last one to be picked, and then when I do end up on somebody's team, they treat me like I'm the enemy"?
"Because, despite my efforts to explain your large motor problems, and your gym teachers telling me
that they understood.. I guess they really didn't. I'll try again." <-- I only hit another brick wall in the compassion department.

On top of all that I've already mentioned, he has many other related health issues, including the gastrointestinal problems, he's allergic to milk products, the lowered immunity system, he's color blind in three major areas, and he's forever bumping into things because he can't approximate distances. THEN, he also has neurological instinct problems; like what were found in the recent "Newborn Monkey/ Hep-B vaccine Correlation Study". <- I hope you've seen it..

Please, I really could use some help here.........

1. EPSDT service has always been a part of the Medicaid regulations!
Congress amended the Medicaid statute in 1989 to make EPSDT a statutory
requirement!!!!
EPSDT requires states to provide Medicaid eligible children with periodic screenings!
It also requires states to provide any medically necessary health care that falls within
the scope of services listed at 42 U.S.C. 1396d(e) to a child..

2. EARLY & PERIODIC - EPSDT requires states to assess a child's health needs
through initial and periodic examinations and evaluations to assure that health
problems are diagnosed and treated (early), before they become more complex
and their treatment more costly.
In addition, "interperiodic screens" - ones outside the periocity schedule - must also
be conducted, as medically necessary.

3. SCREENING - Screenings are the foundation of the EPSDT program!
Screenings much include the following components, listed at 42 U.S.C. 1396(r)(1)(B);
Comprehensive health and development history, including assessment of both physical
and mental health development. Health education, including anticipatory guidance;
Vision and hearing screens; and - Dental screens!

Which means the strong suspicions of Autism Spectrum/ Aspergers, should
have been covered! When our family doctor tried to get approval for a complete neuro-psych for Alex to confirm the suspicions, his request was turned down cold.
Our doctor was told to refer us to Community Mental Health (CMH)! CMH's policies clearly state that they will service ONLY the "mental health" items!
With A.S.D's, there are almost always related physical health problems as well; gastrointestinal problems, lowered immunity systems, perception problems/ SPD's
( issues which are neurological/ PHYSICAL! ), etc., etc....
Also?? The dental and vision benefits part of Medicaid that the states keep saying they are going to cut due to lack of funding? Under EPSDT, (FEDERAL STATUTE), they are forbidden to cut those services for children under 21. (For adult recipients, sure they may cut those services, but NOT for children under 21 years of age).

4. DIAGNOSIS & TREATMENT - EPSDT also requires states to provide treatment!
42 U.S.C. 1396a(a)(43)(C). Health care MUST BE made available to treat, correct, or
ameliorate defects and physical and mental illnesses or conditions discovered during
a screening. (Conditions need not be newly discovered during a screening). All
conditions must be treated!
States are required to cover all medically necessary services listed in the Medicaid
statute at 42 U.S.C. 1396d(a) "whether or not such services are covered under the
State plan." 42 U.S.C. 1396d(r)(5). This means that Medicaid must provide all
optional Medicaid services for children, even if the state does not cover these
services for adults!

Did you note that under the EPSDT Statute; "Medicaid must provide all optional
Medicaid services for children"??

Mandatory Categories - Inpatient hospital care - Outpatient hospital care -
Physician's services - Nurse midwife services - Pediatric and family nurse
practitioner services - Federally qualified health center ("FQHC") - Laboratories and
x-ray services - Rural health clinic services - Prenatal care - Family planning
services - Skilled nursing facility services for persons over age 21 - Home health
care services for persons over 21 who are eligible for skilled nursing services
(includes medical supplies and equipment) Early and periodic screening,
diagnosis, and treatment for persons under age 21 ("EPSDT") Vaccines
for children

Gee, it appears to me that EPSDT services are covered under the "Mandatory Categories"!

Optional Categories - Podiatrists' services - Optometrists' services and
eyeglasses - Chiropractic services - Private duty nurses - Clinic services -
Dental services - Physical therapy - Occupational therapy - Speech, hearing
and language therapy - Prescribed drugs - Dentures - Prosthetic devices -
Diagnostic services - Screening services - Preventive services - Rehabilitative
services - Transportation services - Services for persons age 65 or older in
mental institutions - Intermediate care facility services - Intermediate care facility
services for persons with MR/DD and related conditions - Inpatient psychiatric
services for persons under age 22 - Christian Science schools - Nursing facility
services for persons under age 21 - Emergency hospital services - Personal
care services - Hospice care - Case management services - Respiratory
care services - Home and community-based services for individuals with
disabilities and chronic medical conditions

All of the items are services that Alex needs! It's beginning to become real obvious to me why they keep blocking Alex gaining a "formal diagnosis".
What seems ridiculous though ---->>>> If they were to actually allow him what he needs now, then he may actually grow up to be a healthy somebody who could/ would be a contributing member of this society of ours rather than perhaps ending up on "disability" because he still is unable to function!! But then again, government has made it more and more difficult recently for people to qualify for "disability". So at that point they'll say something like: "Too bad, so sad, you can eat at a mission, and sleep in a box for all we care! You're not disabled enough!"

5. STATES MUST ASSURE THAT CHILDREN RECEIVE EPSDT SERVICES -
EPSDT requires that states do more than merely offer to cover services. The states are
obligated to actively arrange for treatment! Frew -vs- Gilbert, 109 F. Supp.2d 579
(E.D. Tx 2000). Chisholm -vs- Hood, 110 F. Supp. 2d 499, 508 (E.D. La. 2000).

Perhaps someone ought to inform the individual states of this? (It's not that I haven't tried..). They apparently don't care.

TIMELY TREATMENT - States must ensure timely EPSDT treatment, generally with
an outer limit of six months after the request for screening services.

Three cases are noted here.. under the "Timely treatment" clause.

Limits on EPSDT Services

1. Medical Necessity - Under EPSDT, state Medicaid programs must cover "necessary
health care, diagnostic services, treatment and other measures to correct,
or ameliorate defects for physical and mental health illnesses and conditions."
42 U.S.C. 1396d(r)(5).
Services must be covered if they correct, compensate for, improve a condition,
or prevent a condition from worsening, even if the condition cannot be prevented
or cured!

This sure seems mighty clear to me.. How can anyone possibly not understand "medically necessary" here? It's defined in black & white in this section for everyone to see