July 12, 2016
The Interagency Autism Coordinating Committee (IACC) will be meeting on July 19, 2106. In the past, we at TMR have been highly critical of this committee and its lack of impact on the autism community. Well over a billion dollars have been spent supposedly “combating autism,” while the autism rate has continued to rise alarmingly. A huge proportion of that money has been spent on genetic research that has so far yielded nothing that is helpful to anyone with autism. For each meeting, we urge people to write and let the committee know their real concerns, and many of you have done so — repeatedly — and those words have fallen on deaf ears. This is a letter to IACC written by a mother in the community. You can feel her frustration, a frustration she shares with far too many people who have been ignored and marginalized by the very committee that was created to help them.
To the Members of the IACC Panel:
You have a new issue.
A parent that has written this group in the past has now passed away.
She literally wore herself down to the core.
She had a massive heart attack, and she died.
She was only 61 years old.
Her son on the spectrum is 22 years old. He will more than likely need help for the rest of his lifetime.
Her husband had just been laid off from work.
There are few, to little, to no resources for this family to pull from.
There was no savings account for this rainy day. When you live and care for severe autism daily, it rains nonstop.
This family lost their home a few years ago.
Their medical bills and son’s needs were more important than the mortgage.
There is not one place for us to call — nationally nor locally — to help this family at this moment. What we have is a network of private nonprofits started by other exhausted autism parents that might be able to help. [Editor’s note: If you wish to donate to directly help this woman’s family, click here.]
You failed to help this family. You are failing all parents as we watch ourselves and our children, who are now adults, age daily. We do the math in our heads. If I pass at the same age as my friend just did, as I use the rate of my county placement average (for those that are currently on the list) it will be 11 years, after I pass, before a placement would be available for my son. That is only if no one else is deemed an emergency and placed before my son. Oddly, I do not wish for my son to be that emergency placement. I do not wish for my son to be placed after my own demise. I would like to aide my son in his transition to a new location. Is that asking too much?
IACC, you failed this family, and there are countless others just like them.
You ignore our personal and compassionate pleas that tell you what we need done daily by this group.
You are meeting about a topic and debate to no clear end. We live daily with your lack of response and lack of support.
Who among you, sitting at this table, lives with low functioning, non-verbal autism daily and has done so for two and a half decades? Having a loved one placed in residential services is not the same as providing daily 24/7 care. My son has not one real representative on this panel to speak or say his case. If for no other reason, my son cannot speak to share his concerns. He cannot advocate for himself. He cannot type. He can hardly reply to yes and no questions on his best day.
The Interagency Autism Coordinating Committee (IACC)
Parents like myself and the woman who passed are tied into an endless network of forms and paperwork while trying to care for our children daily. I am personally not even fully vested into social security due to the number of years that I have been at home caring for my son and without a paying job.
There must be a better way!
Those of us lucky enough to have waivers in our states could not find housing before all the current CMS [Centers for Medicare & Medicaid Services] changes. We now contact agencies that are understaffed and that have their own waiting lists. As we hope and pray for help to find home staff that might help us, until the agency staff aide quits because the job was too demanding!
The paperwork involved for them is worse in some cases, than the jobs they are asked to do.
In all seriousness, I would love to bring my son to your meetings so he could present his own comments. Trust me when I tell you that his stim, and loud echolalia, and OCD that he presented within the last 24 hours, would not allow this group to even complete your roll call for attendance.
And we wait.
We bury our allies and other autism parents one at a time as we wait.
While CMS says group homes are too restrictive, I wonder if this placement was? “Autistic Woman Kept in Backyard Cage and Forced Into Prostitution, Say Police.” It is my understanding that this woman’s mother passed in December. Should we blame the woman that passed? Do you think this was the outcome the mother, her care provider, hoped for?
You have spent over one billion dollars as I know one family that is scraping together just to have a memorial service for a loved parent.
Our children’s lives matter!
We have little to nothing once our loved ones age out of school services. What placements we had CMS is saying are now too limited, too restrictive and are too much like an institutional setting. Yet, all the while that is the very support and services that a very large percentage of our community members need just to be safe! When those on the highest end of the spectrum cannot find jobs, what will become of the people that are non-verbal and have autism? Where will they work? My own son was not even able to work at our local Goodwill due to his behaviors, and now his workshop is too restrictive? Are you kidding me?
I am currently looking at newly designed “workshop” ideas in Ohio. None of those new choices would fully serve my son’s needs nor replace what he has currently. My son hates change. My son loves routine. What is being offered to him for his betterment will be very difficult for him to adjust to. We recently painted the exterior of our home. It was long overdue and very much needed. That “simple” change, to freshen up the exterior of our home caused my son to yell and cry. This is the same son that the “system” is now saying can or should be easily be placed in a job in his community. Sadly, even with one-on-one staff, my son, who had countless hours of private treatments and private interventions so he could possibly function as an adult in a typical setting, is still not able to do so. I tried. We all worked so hard. The progress came, but not at the rate needed to function in a normal working world. Now we are punished. We are all being punished for getting to this point and not gaining enough. I had one son recover from his autism. Should my oldest son lose what he is able to do? With change, sadly, comes regression for him. This panel will sit and sadly allow that to happen. To you, he is a number. To me, he is my son.
Please ask yourself why you are part of this panel. Please ask yourself what one positive effect this group has served for the sickest and most ill of the autism population. Adults with autism that still need help toileting are going to find zero jobs in the mainstream world.
Adult waivers do not cross state lines. We are not even allowed to move to a place that might have the natural support of family and friends, or we will again start at the very bottom of the wavier waiting lists. There are now over 44,000 people waiting for waivers in the state of Ohio alone. What is that number nationally? Now add in all those DX under the age of 22 that have autism and have no wavier.
As we are waiting for help, the autism rate is growing daily. And now, sadly, parents and natural care providers are passing. What will become of the sickest of our children that you and our government have now ignored and willingly chosen to forget about for now over one full generation of children.
The quality of my son’s life lies in your hands just as much as it lies in mine. I lost sleep while writing this letter. Most people you will never hear from. Most parents are so busy existing daily they do not even know this group exists. You will have your airfare paid for. If I would come to speak my mind in person, I must pay for that from what personal funds I do have. That is exactly why you have so few people attending your meetings and showing up to speak to you.
I will be donating the value of my airfare to a family that I personally know that just lost their mother. What matters in the end, my money will help another autism family. We are all we have. I gave that airfare money value instead of talking in person to people who are just going to ignore my plea.
Please, feel free to prove me wrong.
~ Carol Fruscella
http://www.thelibertybeacon.com/vaccine-lies-premeditated-murder-government-pharma-immunity/
Accountability in these government health agencies is nonexistent!
If you or I were responsible for the premeditated murder or the permanent disabling or massive harm of another human being we would be sentenced up to life in prison or be handed the ultimate prize in the game of evil actions … the death penalty.
And Yes I CLEARLY Said PREMEDITATED MURDER …
Why does everyone pussyfoot around that accusation? It is surely blatant, BUT from the absolute proof available it is also blatantly obvious and appropriate! Or do our governments enjoy special privilege or immunity from murder charges us lowly folk do not … WAIT a minute, this is a Republic and WE ARE THE GOVERNMENT, so it may be time to prosecute for murder these tyrants and traitors to our health and the safety and health of our much more vulnerable children.
There was a certain group that was fighting a cause in the early 1990s. They marched up to the White House lawn with quilts and pictures of their love ones sewn into the quilts. There were thousands upon thousands of people on that lawn. This sent quite a message and eventually they did get results. Anyone up for quilting And marching? I think we are long overdue.
Funny you should mention that… the lobbyist for the APRC has said a number of times that we would make more progress if there were a more militant wing like ACT UP putting pressure on Congress and the administration. Of course the NAMES Project isn’t ACT UP, but it is a very VISUAL reminder of what has been lost. The autism community has been hampered from the start by the fact that most parents are strapped for time and cash due to caring for one or more special-needs children. I think a quilt is a great idea, but you are faced with the very real challenge of getting thousands and thousands of people to Washington. We might make better progress with a social media campaign that is targeted and coordinated, but I certainly wouldn’t discourage getting many live bodies onto the mall and into Congressional offices.
I totally understand that parents are strapped and exhausted to think about something like this. I certainly never had the time to either. My son is now 22 and I feel like I am ready if we could ban together. How many people are in this group? We could start right here and start getting feedback as to who would be in for doing this. I also belong to other groups and I’m sure parents here belong to other groups as well. If we got some feedback maybe we could put together a committee and get something going here
Well, there are twenty-four founders, three of which have left the organization for various reasons, but there are approximately 40 other people affiliated with us, and our Facebook page has 56,000 followers.
This group ALL ARE TERRORISTS! They all get pay by taxpayers money and have ZERRO integrity and conscience! THEY JUST DON’T CARE!
I wouldn’t call them terrorists, as they are not deliberately setting out to cause terror. In fact, they frequently try to minimize the autism epidemic with the bullshit about “we don’t know if the incidence is a true rise or is just due to ‘better diagnosis.'” But, yes, they do get paid by taxpayer money and the overall group doesn’t have much integrity, though a number of individual members have been TRYING, especially Lyn Redwood who served two terms.
I hear what you are saying – but – I see parents of autistic children in terror everyday. It is heartbreaking while these people sit around, get our tax dollars and our children continue to suffer. The parents I see certainly are terrorized.
So, you defend death by southend cuts, but not execution by beheading. I was born in socialist country and I am extremely sensitive to the issue of indoctrination and mandating government. I know how it works and how much damage it can cause to unsuspecting population. Do you think all those people done any research of the issue on their own? I am sure they don’t. They are too comfortable with their pay check. And I am sure they don’t get pay $7.00 an hour. And conflict of interest? It is outrages!
???? I don’t defend death by anything, and I have no idea how you would have gotten the idea that I do. Nor do I have any clue what “southend cuts” are. The IACC cannot mandate anything. Whether or not they would like to is utterly beside the point. They are not legislators and cannot compel anyone to do anything. That is actually part of the problem when it comes to the fact that nothing has gotten done. Their strategic plan is not horrible, partly because it was developed by committee and at least some of the committee is actually interested in seeing positive change. But there is no power to compel the NIH or any other agency to follow their suggestions. Case in point, they sent an outline to Kathleen Sebelius when she was the head of the Health and Human Services Department with some suggestions for how to improve the safety and wandering situation for children and adults on the spectrum, and that memo was virtually ignored with the end result that it is still a huge issue. A seven-year-old nonverbal girl wandered to her death less than a week ago.
The IACC does not exist to serve you. They exist to serve Pharma. (They are a division of the HHS.)
This is so true. Years and years of “research” and here we are with still no answers. Nothing. No cause that they will acknowledge and no proven treatment. And it is so true that our children cannot advocate for themselves. This is why we don’t have huge protests and demonstrations – parents are too busy taking care of their children and advocating for school issues, medical, insurance, daily care, etc. I look at at the protests in history and the progress that has been made for many groups and populations. I ask why aren’t we doing this. I know why – as just stated. But – can we? Should we? Anyone? I feel like until we make some noise and public statements (peaceful of course), we will continue on just like we are. My son is 22. Nothing’s changed. I did it all – medically, therapeutically, educationally, etc. Still no viable answers or solutions. Where is the cure for our children. Where are our answers as to what is really causing this. Who saw the movie VAXXED? Look at those numbers! We are in big trouble.
Someone requested I write a book or advertise my services (even just for resources) as in the last 30 years I’ve learned first hand the evil of the medical cartel (pharmakeia being big bad not good, goliath!) and the in ability of the government to do much good.
In the past I helped a lot of people on the road (the NARROW road) to health,
including my exwife when she was given 90 days with terminal extensive cancer. (that was in 1988, and she was free of cancer within 120 days of my finding out and her getting the right help). Note that other factors are potentially very vital – she left and went to living a life of rebellion against God, and now is worse than ever, on oxygen 10 hours a day (I was told)…. (not that I was always a saint myself, but like Believers in the Bible, I repented quickly, and walk on the straight and narrow purposefully and obediently, by the Grace of our Father and abiding in JESUS) … …
Anyway, a step, baby steps, at a time…… for free help deciding where to look for help on the road to recovery, email me ten.xoc ta giarcffej backwards 🙂 (since all the posts in all the forums are harvested for emails and other information)… or just for prayers, shalom, jeff craig
That is a wonderfully eloquent letter. I think she is absolutely right about the IACC – they will probably ignore her letter. If they can ignore public comments concerning serious self-injury and aggression, they can ignore almost anything.
“When you live and care for severe autism daily, it rains nonstop.” Yes, and not just a gentle drizzle, either. Sometimes you have a tropical storm or a hurricane.
I would call them failures, but since I think the purpose of this committee is NOT to find causes and solutions, and to continue the government and industrial CYA, I will call it a raging success.
Now Ginger, stop making so much sense!
YES, let the truth be known. This is exactly why they are formed. What do we do now? Take our wellness into our own hands. Look in an upcoming TMR newsletter for my BLOG article and learn out a new option I will be presenting to assist you and our kiddos. So excited.
What she said!! And STOP perpetuating this problem by ending the disastrous vaccine policy that is causing it.
You have wasted all
Of our resources on NOTHING. You’ve flushed billions of dollars pretending there is an answer in genetics to keep the truth from being known. This is a man made disease. You have failed us and our children on every level. Shame on each and every one of you.
OMG. This. Read this society. This is our reality. And sadly, it’s yours. Because you will ultimately pay the price in taxes for what the government allowed to happen and then ignored, for an entire generation of children.