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Chantal Sicile Kira: Open Letter to Governor Jerry Brown On Budget Cuts and the Lanterman Act

Jeremy grad Read the full post and comment at HuffPo HERE.

Dear Governor Brown,

As I write this, both the Assembly and the Senate Budget Subcommittees on Health and Human Services are preparing for hearings on proposed cuts to Developmental Services.

When I voted for you in 1978, I was working at Fairview State Hospital and was preparing young adults with severe developmental disabilities for de-institutionalization so they could live in their own community - a civil right they had following the passage of the Lanterman Act.

When I voted for you in 2010, I was preparing my own 22-year-old who has a severe developmental disability for adult life. Jeremy, who is impacted by autism and uses assistive technology to communicate, has been raised to believe that he has the right to a fully included and productive life in his home community. Unfortunately, he needs support in order to do so. He hopes in the future to be able to earn enough money to pay for his own supports, but right now, he needs help.

Jeremy graduated from Torrey Pines High School last June with a full academic diploma and inspired many people with his commencement speech . Now, he is having a very hard time handling the uncertainty of "adult services" since aging out of school district services.

My son has been very well prepared by his school district and his family for transitioning to adult life, however, the systems in place are not prepared for the likes of him. As a nationally recognized author and expert on autism and transition to adulthood and adolescents, I am wondering if it is this difficult for my son to transition to adult life, what is it like for those who are not as fortunate as we are? What is the point of a Lanterman Act - which is civil rights legislation for those with developmental disabilities - if there are no monies to enact and protect these civil rights? Budget cuts enacted over the past few years have already eaten away at some of these rights.

But I think you should hear straight from Jeremy how all these cuts are impacting his hopes and dreams for the future - and he is just one of very many. Jeremy wrote the following article, which was published by the MiraCosta College student newspaper, the Chariot, on January 31, 2011. Jeremy is a staff writer on the Chariot and is writing a book to be published by Palgrave MacMillan in April 2012....

Read the full post and comment at HuffPo HERE.

Comments

Carolyn M

I have a correction:

I should have said: "some of the comments posted about Offit are venting". Sorry for any confusion.

Carolyn M

I had some trouble posting this the first time, so I will try again.

I am glad to hear that Jeremy is doing well and I sincerely hope that he can get the supports that he needs.

I am well aware that the time is rapidly approaching when my daughter will "age out" of the public school system. I am also aware that services are completely inadequate (to vastly understate the case). Unfortunately, my daughter has medical issues that currently require much of my attention and effort - these include chronic gastrointestinal dysfunction, mitochondrial dysfunction, and allergies. We also had a long dispute with the public school system regarding her placement.

I do not believe that services will be available when my daughter needs them, given the current budgetary problems and the tendency for government officials to cut services to the special needs population before looking elsewhere in order to balance their budgets. However, when the time comes I will indeed be advocating for my daughter - if I don't try, then failure is guaranteed.

With regard to Offit, he is adversely impacting our children. His public statements minimize both the number of children with autism and the severity with which they are affected. This will give government officials what they might regard as a plausible excuse to do nothing to help our children obtain the supports/help that they need, since the press presents him as an "autism expert" - and parents as overly "emotional".

Finally, some of the posting about Offit is venting - and is probably beneficial to the poster's mental health (ie. stress release).

Laura Sauls

Wow! What a letter! My 9 1/2 year old son is in the "I have no idea what your future holds" camp. True, I can say this for my 6 year old NT son, too, but I don't doubt he could attend college if he so desires, get a job that will actually support him, live alone, etc. I have no idea if any of those are possible for my oldest. He's high-functioning enough to get through the school day with no one on one assistance, but he's in a contained special ed class. He enjoys doing extra-curricular activities, but needs extra help that his younger brother doesn't. There's really no telling what the future holds, and knowing that there probably won't be help after high school for kids like ours is very scary, indeed!

Donna K

When I read this post, my mental response was "well, Jeremy was very fortunate to at least have gotten some good services for so many years."

I'd like to advocate for increased community activities and services for adults on the spectrum, but I see a much bigger problem needing my attention. That is recognition and treatment for the constant physical disease that tortures many of our children (no matter their age), mine included. Many of us are focused on fighting just to get medical attention for our very physically sick children who have autism. I cannot even begin to think about what the community will offer her when she's an adult because she is still too sick to even attend school many days. If and when the day comes when she is physically well enough to "be a part of the community" I understand and accept that I will still be responsible for her daily care and welfare. I am not counting on any public assistance for her current or future care. My family has made provisions accordingly.

We personally are also expending our energies fighting just to get some basic services through our school district. For instance, my daughter uses a wheelchair because she suffers from a left-sided paralysis (besides severe autism and irretractible seizures and gut disease) and yet we had to fight to get the school district to provide a wheelchair accessible bus for her transportation to school.

But, for the most part, there are many of us who are still fighting to get proper medical attention for our child who is suffering from medical neglect from doctors for their severe gastrointestinal and immunological dysfunction. Until the truth about the cause is revealed and widely accepted, we won't get politicians or the uninterested public on board to help provide funding for programs when they think autism is a genetic disease about a savant child or a loner child or a child with some quirky personality traits as the media has characterized the condition. The cause of this epidemic of suffering is of upmost importance to getting the unaffected public on board to support care. Most importantly, it will allow doctors to step up and provide appropriate medical treatment for our children without fear of losing their medical licenses or reputations.

Until then, I am going to put my efforts into supporting those who work at finding and revealing the truth about what happened to our children and how we can help them gain back their health, and ultimately those efforts will prevent more children from becoming victims of medical and industrial pollution.

John Stone

Chantal

I am sure many people digested your piece and reflected on it, but very often it is the rhetoric which counts when it comes to getting responses: there must be many readers here who are looking down the barrel of the same gun and almost no one in the autism community who is wholly indifferent (just as I am equally sure that there many outside who are cold and cynical and perhaps very short-sighted).

To speak for myself, if I have focussed on other issues it has always been to say to our rulers that they owe our children, but also to stop it happening to others. Unfortunately, the best articles don't always get the biggest post-bags, and this is certainly a very poignant one.

John

Mary

I do not believe for a minute that there will be anything for mty son when he becomes an adult. I know we will be on our own just like we've always been. We are actually prepared for schools closing down special education soon.

chantal Sicile-Kira

Thanks for your comments, I am making sure Jeremy gets to read them.

Sadly, I am not surprised by the lack of comments. It is my experience that many people - including parents- prefer to stick their head in the sand than to face the cold realities - something I learned the hard way when something really bad happened to my son years ago - none of the other parents stood up for me or Jeremy - they preferred to ignore the situation, pretend it did not happen (FYI my son received victim assistance from the state) because they prefer to think it could never happen, and especially not to their kid. Well, just because you won't acknowledge "bad things", doesn't mean it won't happen to your loved one.

As well, it is easier for parents to spend time and energy playing the 'blame game' - who can we blame for my child's autism? It is very important to know causes - but you also have to face the fact the autism is here and you'd better be thinking about your child's needs and the future. The stark reality is that not all children are 'cured' or 'recovered' - yes, many get better, but many of them still need supports of some kind.

The other thing, is people think they will have an easier transition to adult life - it won't happen to their kid because they will be better prepared. LOL You can plan all you want, you can be as active as you want, you can follow the rules all you want, but if the systems are crappy or aren't prepared or are clamping down because of budget cuts,- your child will suffer as well.

So Please, don't just wait for the older parents like me or those who can express themselves like Jeremy - be active now. Write those letters now, fight those budget cuts, do some creative planning with others. We older parents are getting tired; you won't be able to ride on our coattails for much longer!

My best to all of you,
Chantal

Willie

VACCINES CAUSE AUTISM

This is typical of a mismanged government. I tell people everyday not to vaccinate their children. They always cut money from the most vulnerable and needy first-because they cannot vote or protest- just like children getting vaccinated they cannot protest they are being taken advantage of.

DO NOT VACCINATE ANYMORE!!

VACCINES CAUSE AUTISM

Bre

Most people I know have high functioning or recovered kids. I would like to say that I am inspired for the first time in a long time by Jeremy. I have an 11 year old son who is still classified as non verbal. He is in Verbal Behavioral Therapy and has begun echoing as well as producing some spontanious speech for his needs. I have always known that he is in there, I just can't get the result that Mr. Gustoffson did. No one has demanded he talk outside of our isolated miitary family of four until now. Now we are only 4 hours from home and get to visit once a month. Verbal Beharior has helped him begin to communicate, but he is in autism school b/c his school district refused to help but also encouraged self-injurious behavior. Needless to say we pray for a Mr. Gustofffson to reach out to him and do more than we can at home. THANK YOU for sharing!!!!!

dbcmom

Ok, there are only 3 comments so far-thats it??!!! SAD. If this was about Paul Offit, there would 33 comments!!! We have GOT to start getting mad and vocal about THESE issues-issues most of our children will face-transition issues and the lack of adult services. If we were HALF as passionate about this issue as most people on here are about mercury, we could incite REAL CHANGE for our KIDS!!!! Please lets all figure out a way to rally around this. Kim S-suggestions? What can we do??

Sarah

Why do we pay to live in a society that makes us and our children suffer? I wish we could leave like those who came to the New World to escape religious persecution and start a new colony and a new life for our families. We could share resources and support eachother. We could foster our childrens talents.

I have a dream of starting an autism community somewhere warm outside the US. Since my son was dxed, I feel alienated from my country and, with budgets being cut and services being lost, I don't think it's going to get easier for us or our kids.

It makes me sad. but maybe it's time to get out.

John Stone

This is heart-breaking. How many of us now watch fearfully. Our children have been betrayed so often. It is almost as if it is no longer a talking point. We grieve for our children and we grieve for our indifferent society.

dbcmom

" As a nationally recognized author and expert on autism and transition to adulthood and adolescents, I am wondering if it is this difficult for my son to transition to adult life, what is it like for those who are not as fortunate as we are? " Chantal, you are so right. How will we all survive our childrens transition to adulthood? How will we help them? This thought wakes me up at night. This thought can bring me to tears. My son is only 7-but I know the harsh realities. Thank you for writing this. Thank youJeremy , for what you wrote. You are such an amaziong and gifted writer. I hope everyone that reads AOA reads this article -it is WAY more important than OFFIT and WAKEFIELD. WAKE UP PEOPLE.

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