Jeannette Bishop, what you say makes perfect sense, and I've observed that the same is probably true of the UK system ( the NHS) as well. But they're trying to hold back the tide. Good luck to them!

Hi Benedetta, I am chuckling a bit as I read your post-I like you! And I am sorry, very sorry, that you have had such a hard time. Plus it is a medical cartel. I guess we just disagree about how to fix it. Somebody eventually has to try to actually help the citizens of this country and this bill ain't it, to my mind. I feel it is throwing vulnerable people under the bus--even the President called it mean.

@ Benedetta

You suggested I check out the YouTube link and believe in the promise of my son being grandfathered in. Not sure I put a lot of faith in a YouTube promise. When the money stops flowing, it stops flowing, regardless of promises. Even here in deep blue Maryland, we have thousands of people with disabilities on the waiting list for services from DDA (Developmental Disabilities Administration). And that's with funding at the current levels. Bottom line is that it just costs a lot to provide services for those with disabilities. And with a 1 in 68 (or higher) autism rate, the problem will get worse, not better.

You're certainly right that Obamacare needed fixes. I know you and your family have had it rough - we've both followed the AoA blog for years. But I don't think the current legislation will fix the problems with Obamacare - and it has quite a few problems of its own. I don't see that it will fix things for you - although I could be wrong.

@ Benedetta You sound furious so whatever. Let's just shoot ourselves in the foot then. Remember not getting health insurance due to preexisting conditions? Yeah, the aca (obamacare) fixed that for one. I could go on but if your mind is so closed what is the point. Give away your rights, but it can get worse. No money to keep nursing homes, group homes, or rural hospitals open., etc. etc. etc. . And I don't think the most vulnerable citizens should be the first to make sacrifices. They already have lost enough.
By the way in Europe and every other developed country healthcare is a given. So maybe we are not always right as a nation. Or anyway no other civilized country seems to agree with us here.

I think it was important to be active when California tried and ultimately passed its mandatory vaccine law. In the same way I do not think it is wise to be silent as the senate tries to gut healthcare. Why hasn't there been any articles about something so affecting kids and adults with disabilities. Sure as someone just wrote we pay too much for healthcare but why should the disabled disproportionately be penalized so that the senate can have "a win." Do you want your family to pay for their win?
Or wait for the states to act--hey I have a bridge to sell you.
I noticed that these senators who are so eager to sell off healthcare are not willing to give up their own families' insurance and sign on to their better option, "the win". They know what it is.
If you call your senators this week and tell them to vote no on the bill, you may have an impact. If you do nothing, then don't complain later. Having no voice never works and is the route to no power in the future. This is the time to speak up. Otherwise tell your kids, well there is no day program but at least the top two percent got a tax break. Maybe it will trickle down. Doesn't that make you feel better?

As far as education goes and this I know is what this post was all about.
History and science are the only two subjects that children with learning disabilities are integrated into, so they get some social interactions and get to know a few more students in the class room. That is middle and high school. That is how it was in two different states - from my personal observations.
Everyone always warned 20 -30 years back to not allow your child with autism into behavioral problem class rooms.

I second that. No need in letting them pick up bad habits and attitudes from more troubled students than they already have.

Grade school All the grade schools I noticed that unless the kids are very severe then they are integrated into the regular classroom at least from kindergarten to the third if not the fourth or even fifth grade. All individual when special ed takes them in.

My son had problems from the start but he did not enter special ed until the fifth grade. I think that if I had not been one of those pushy, nosy parents he might have well who knows, the seizures all became so much worse.

What I do know is that school was a time waster when it came to learning. He went to school during the day and when he came home in the evenings, weekends, and all those long wonderful summers was his real time for me to catch him up.

My mother and I- even my husband were school teachers, and it was us that taught him to speak, read, math, even chemistry.
School just makes it harder, since they come home tired. I am all for long summer vacations.
That was my experience.

Aimee Doyle:

I am unsure of everything of what Congress will do or not do.
I do know that the states is the ones that supply, pay for, and decide who gets medicaid.
We were never able to get medicaid for my son. Sigh.
We got vocational rehab. though. Thank God ------- HAAAAHAAAAHAAAAA HAAAAAA. Joking aside that is a big nothing. I am the one that has looked for jobs all the time for him and it is me that has got all of his jobs so far. He is extremely anxious and job trading and new jobs are -- horrible.

Below is an U tube interview. There is a promise of you being grandfathered in. I don't want no one to be scared of losing anything. .

By the way; My son lost his job because he took the company's health insurance. Before that, they worked him 7 days a week, 10 hours a day; with out a complaint about him. When he finally chose to take their health insurance, he had it a month when at the end of the month they let him go cause they said he did not meet his quota.

There is no way to know if you meet your quota or not on this job of going through old medical records and getting them ready to digitizing them. My son worked 2 years for another company doing the same thing and never missed his quota. This old company though shut down, left and laid him off.
This new company he worked for this company 8 months and no mention of quotas. He got lots of overtime. Strange that everyone at his work place were very animate that he not take the company's health insurance. OF course they just told him not toooooo because it was tooooo expensive; when the company's health insurance was five dollars cheaper than his individual. I am unsure that the company's health insurance was a 5,000 dollar deductible though, like his individual.
On his individual insurance; after our encounter with his neurologist, an over night EEG , so he could/might possibly get off of the medicines - only for the doctor not to return our calls on getting off the seizure medicine and leaving us with 10,000 in which the individual health insurance and hospital and doctor negotiated down to guess what-- guess -- 5,000 dollars that we had to pay for.

Fast forward today. We quit the neurologist. The ramifications of that is that our local doctor too blood test for the medicine and found it was low. So, he wants to go with medical protocols and are insisting that we increase my son's medication dose.

So we paid out 5,000 dollars to get him off meds, but the way it all turned out we are going to get to increase the medicines, unless I go through hell, trouble and time that I do not have to not increase his medicine.

Meanwhile; I am worse off than than I was before Affordable Care Act. Unless these reductions do cut money for substance abuse, since my daughter is not working in that field. Then I would have her again to pay for her health insurance like I had to do for three long - sucking my income years. For some reason even with no job, no income, nothing in the bank she did not qualify for the Affordable Care Act.

Maybe it is just our state.
Anyway grandfathered in link below.

http://abcnews.go.com/Politics/kellyanne-conway-senate-health-bill-cuts-medicaid/story?id=48255191

Hi Jenny,
In my opinion its a system that takes advantage of the goodwill and good nature of the support staff as the financial remuneration is palpable.The councils are in charge of the budgets and politics come into play a lot, which really is annoying to say the least.We never had our son in mainstream and to put `dis` in front of everything he is would be accurate and least of all disabled which he isn't physically.I cant see how its possible to include children like my son in mainstream with other kids trying to sit once in a lifetime exams.Children like mine will be totally dependent on others from the time he had his MMR vaccine until his grave.
God bless the teachers who support these kids I too have nothing but praise for everyone well nearly everyone of them.

Pharma for Prison

MMR RIP.

@Leah

I've called and emailed my senators - Ben Cardin and Chris Van Hollen. Both are opposed to this legislation, but that's not surprising, given that they are both Democrats and Maryland is a fairly blue state.

But what we need are people who can reach across the aisle - I don't know how to influence Republican senators - but they must know friends, family (and certainly constituents) who are adversely affected by these Medicaid cuts.

@Aimee. I too am very scared when I hear about these draconian cuts to Medicaid. I have three family members who could be affected. I think the time to act is now not to wait and see. Factually, 60 percent of kids with disabilities benefit from Medicaid. Plus 40 percent of disabled adults. This is not fair. Two family members are on the spectrum and one is older but has cancer. He can't afford higher premiums because of his age, 54, -but is too young for Medicare and working full time. It is pretty nasty to target people who can barely make go of it as it is. I urge you to call your senators. This could clobber a lot of kids on the spectrum as well as others.

Re: Inclusion - I think there are real benefits to inclusion - done right - it's the best of all possible worlds. But it's hard - and quite expensive to do it right - to provide the supports to teachers and students that make it work. And, as others have said, it's complicated. There are probably students for whom it's not appropriate. I do worry that the process of separation (and invisibility) that begins with special education never really ends...and so we rarely see the most disabled kids - and never see disabled adults. Invisibility leads to the greater society not caring, which can lead to tragic consequences for individuals with disabilities - individually and as a group.

@Leah - I agree with you. I am petrified of the cuts to Medicaid. My adult son's day program, his supports and services, his healthcare and medication are all paid for through the federal/state Medicaid program. He will lose everything if these cuts go through - as will thousands of others with disabilities.

I don't think the block grants to the states will work. Here's why. Here in Maryland, even with the federal/state partnership, there are thousands of people on the waiting list for services from the state's Developmental Disabilities Administration. With the number of students with autism transitioning out of school each year, the problem will only get worse. And if this legislation passes, there will be far less money to provide support to those who need it.

As these two stories from Jan show, the numbers keep increasing, and no one asks what's happening to our children. It isn't just autism; it's all the disabilities that are just considered a part of childhood today.

Jan 23, 2017, Chicago Tribune: Critics: CPS Special Ed Policy Is ‘Delay And Deny’ http://www.bettergov.org/news/critics-cps-special-ed-policy-is-%E2%80%98delay-and-deny%E2%80%99
“Venessa Fawley knew her daughter’s transition in September from preschool to full-day kindergarten at a different school would be challenging. A change in routine is especially difficult for kids with autism.
“But what she didn’t expect was that Chicago Public Schools would revoke her six-year-old’s special education services for the new school year. Or that CPS would deny altogether that her child was even autistic. …
“District officials also suggested there was a problem with the increasing percentage of special ed students, despite declining overall enrollment.”

Jan 19, 2017, Texas Tribune: Expecting spike in special ed students, advocates push for better services
https://www.texastribune.org/2017/01/19/advocates-pushing-increase-quality-not-just-number/
“Texas is expected to increase the number of public school students receiving special education services, and disability rights advocates are aiming to improve the overall quality of those services. …
“In Texas, she said, most students with disabilities spend the majority of their days in general education classrooms. ‘They’re receiving all of their content and instruction from general ed teachers who have no training in how to teach them,’ she said.”

Interesting to talk about Australia but we have a very urgent situation here. The new healthcare bill takes a meat cleaver to Medicaid which covers many services for autistic children and adults. This is very serious for those with disabilities. Act now and call your senators if you don't want this rammed through. This could affect your lives for many years to come.

Shaun Berrigan, Australian former professional rugby league footballer, backs Pauline Hanson. He agrees that there has to be more done for escalating rates of autism.


June 23, 2017, Brisbane Courier-Mail: One Nation’s Pauline Hanson’s comments were on right track
http://www.couriermail.com.au/rendezview/pauline-hansons-right-autistic-kids-dont-belong-in-mainstream-schools/news-story/50cf3449acfc8755452b84fa0fd0022b

"I have an autistic daughter named Imogen and as a father of four girls, I agree with Hanson’s comments that children with autism spectrum disorder should be removed from mainstream classrooms.

"Children with autism have behavioural issues that in order to address, takes up a lot of their parents’ time, while taking attention away from their other children. So you can imagine what it must be like for teachers who have to dedicate extra time away from their classroom of neurotypical kids. ..."

Anne, I agree we don't want our children arbitrarily segregated. But the issue of inclusion in classrooms is complicated.
When my son was accurately diagnosed with autism in the fourth grade we agonized over his schooling. We decided to take him out of the school for learning disabled and put him in regular public schools so that he could see normal social interactions. In retrospect I think we made the wrong decision. He needed one on one instruction. And as he got older and wanted to fit in as a teenager he felt worse about letting others see what he couldn't understand. As I say this is complicated.

Senator Hanson sounds very unsympathetic but I doubt whether she is more creepy than the people who try to pretend that everything is normal.

I think most autistic children would benefit from separate classes: I know my daughter would have. It continues to be the case that EVERYONE just assumes that they DO understand English and COULD use it if they wanted to. Speech therapy continues to be just "chat" therapy, which assumes that if you ask an autistic students questions on topics interesting to him in a kind, welcoming way, that OF COURSE they can answer back. How could they not, after having heard English every day all their lives? NO comprehension of the brain damage that is autism. Autistic children need several hours a day in special classes devoted to teaching English as a foreign language incrementally, with a lot of demonstration and structured practice, always using and coaching the students to use complete sentences. School subjects MUST be taught in very simple language, very simple concepts chosen to be at the comprehension level of the individual student. This is NOT being done in public schools, and even less in general education private schools. FERPA is actually a federal law, which requires inclusion of special needs children in the general classroom, where they flounder, are endlessly bored and uncomprehending, are often disruptive and learn nothing. Their paras try to help them do the general classroom work, but obviously can't work miracles, and wind up just telling them what to write. In high school (where my daughter is now), they have to take all the required courses that typical students take, theoretically modified to their comprehension level. At least in my daughter's case, this has not been done AT ALL. It's been five or six years since she brought home any papers, quizzes, or tests, since she could not do well on any kind of unmodified quiz or test. And I have not ever seen ONE SINGLE modified piece of work or evaluation. In middle school I asked if she could be in the special ed classroom, but was told no, she couldn't, as they said she tested of normal IQ (no comment), and they already had ten students in the special ed class and it wouldn't hold any more. My daughter had had a nervous breakdown under the ridiculous expectations, and their answer was to put her in PLATO online learning at a computer all by herself in the autism classroom which was empty most of the day, since the students were all sent to typical classes with paras, and an autism social skills class once a day. My daughter couldn't cope at all in the social skills class, being the lowest verbal autistic student in the school. She couldn't cope at all with the PLATO online learning designed for typical students, and four months later, it was revealed that she hadn't been able to answer a single question right in the online learning. I took her out of middle school, but a year and a half later, she wanted to go to high school, and after a lot of negotiation and anger at what she had endured since kindergarten, we got an extremely mediocre program set up with theoretically (not really) adapted work in the core classes. She hasn't learned ONE SINGLE THING in school. I also homeschool her and she's learned a lot that way. I've written up question sheets for the Core Knowledge curriculum 1-12 from a guide with outlines for every subject for every month. And we work until she can answer every question independently at least twice. Our outside speech therapist says that that is known as error-free learning and is what is used in the rehabilitation of stroke victims. And we have also worked on ESL for nearly four years, using the Cambridge Connect and now Interchange series. Cambridge has excellent books for every level, down to preschool, and this is the program which would revolutionize education and English acquisition for the autistic. Cecily says a lot now, and uses the basic structures for questions and comments to say many things, when four years ago, before we started, she could only say a few rote sentences learned by heart, like What are we having for dinner, without being able to use those structures to say anything else. Now we're working on making requests saying Could you..., Would you..., and, most important, Would you mind putting, going, buying, etc., using gerunds. And What is it used for? It's used for putting, making, etc., another use of gerunds. And the answer to the request starts with I'll do it in a minute, I'll put them away right away, always with I'll. They HAVE to be taught every single little structure independently and not assume ANYTHING, and that way they have the neural circuits with the structures restored after having been broken by the vaccine encephalitis, and able to be used and also used to support the storage in memory of experiences, and used to enable the gradual development of complex thinking and reasoning, which cannot be done without intact language structures on neural circuits.

So yes, autistic children NEED to have separate classes with specially-designed educational materials. it should not be viewed as segregation, but as appropriate accomodations for an extremely severe condition.

And there ARE genetic tests for "vaccine allergies." Harmony X and Engerix both developed simple tests to look for the genes most associated with autism, with the intention that these people would not receive vaccines. But the FDA PULLED THE PLUG on them and did not allow these products to come to market, as that would let everyone know that vaccines DO cause autism when given to those with the genetic susceptibility to reacting to them with autism (etc.) This is just a fact, and should not be feared or interpreted as being denigrating in some way. It is not denigrating, just the way it is, and these children would be happy, healthy, and normal if their genetic profile were respected and they got few or no vaccines.