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One Small Step for Autism Healthcare

Town hall stage By Kim Stagliano (read more about the meeting in The Connecticut Post HERE,)

Last night, my husband, three daughters and I attended the healthcare town hall meeting in Bridgeport, CT, hosted by our Congressman Jim Himes (D.) We couldn't get a sitter, so we decided to bring the kids along rather than miss the event. After all, healthcare for children is of paramount importance (right Elmo?) I packed GFCF pretzels and a portable DVD player for the kids. Locked and loaded!

The evening began with a few words from Congressman Himes about his desire to see all Americans with healthcare coverage and his honest appraisal of where he felt some of the faults in the system are today. Aging population requiring more healthcare, higher mortality rates and worse outcomes per dollar spent than other nations, spiraling healthcare costs, and a system created after WWII where employers, who once took care of employees from cradle to grave, are the keepers of health insurance.

In today's world, a worker is likely to change jobs several times over the course of a career. The days of Dad packing his lunch every day for 45 years at the same factory or office and getting a gold watch upon retirement are long gone.



Town hall kim Then began the Q&A. Now, Bridgeport, CT is in Fairfield County, Connecticut, one of the wealthiest counties in the nation and home to Greenwich, New Canaan, Darien and other towns that conjure images of gardenparties with gin and tonics and Range Rovers in every driveway. Bridgeport ain't Darien. It's a working class city without a lot of jobs left.

The crowd was primarily in favor of President Obama and a revised healthcare plan for the nation. There were, however, lots of folks who were against a public option, felt that American health care in its current form is fine the way it is and who vocally derided every pro-change citizen who posed a question. Hey, that's democracy. We each get a voice.

Town hall mark and bella And I did too. After two hours of channeling Arnold Horshack (Ooh! Oooh! Pick me!) I got to ask a question. It went something like this.

"Hi, I'm Kim Stagliano and I live here in Fairfield County. Last year my husband lost his job. We couldn't afford COBRA. We applied for private health insurance. We were turned down because our three daughters, who are seated behind me, have autism. Will you make certain that people with autism are not turned away from healthcare? Also, we are, I believe, the only nation that allows direct to consumer ads by pharmaceutical companies. They spend billions. Could we tap into that dollar pool to help pay for healthcare? Thank you."

Congressman Himes answered that just last night he'd spent the evening with families who have children on the spectrum and he was shocked to learn about the financial devastation that never seems to end. So "yes" was his answer, he would include autism in healthcare.  At that point, I kind of zoned out and didn't catch his answer on advertising dollars from pharma.

Everyone clapped, I got thousands of eyes giving me the, "Oh honey, how DO you do it?" look as I walked back to my seat, where I hugged my girls who were well behaved for over two hours, sitting quietly (ish) in their seats.

How do any of us "do it?" How do we love and adore and raise our kids with autism? I never seem to have an adequate answer for that. We just do it, don't we?

Kim Stagliano is Managing Editor of Age of Autism.

Comments

Stagmom

Eric, I think if it takes gov't to make sure than insurers actually insure people - remove pre-existing conditions clauses and stop dropping folks who become sick - that alone is worth the battle. We have a public option in CT called Charter Oak- it's by no means perfect - and it's underwritten and managed by United Healthcare, Aetna and/or another local insurer. You get to choose. It's not the state providing the actual healthcare - just access. It's costs are on a sliding scale from $75 per family member to $259 per family member if you make over $77K.

I'm all about access. Afforability would be nice too.

Eric

Kim, how do you feel about greater direct government control of healthcare? As much as reform is needed I can't help but worry that the same people who poisoned my kid and are now stonewalling us will now decide what is and is not appropriate treatment.

Deborah (www.debstake.wordpress.com)

We do "it" because they are our children. It is no different than if your "perfect" child was in a horrible accident that left them in a wheelchair for life. You do what you must because they are your children and you love them.

Every parent wants what is best for their child. Every good parent can and does adjust to the sometimes unfair circumstances of life.

I feel a new blog coming on....LOL

karenatlanta

Go Kim! While I am not in favor of gov sponsored scary health care options, I do think the system needs reform. I like the non-profit co-op idea and out of state bid options.
When my son was diagnosed we had great PPO insurance that covered almost nothing Autism related. After my son was scoped our premiums went through the ceiling, over our mortgage payment in price. We couldn't afford it and keep up with the DAN treatments healing my son.
So we did the unthinkable...we dropped our $950 dollar/month insurance for 2 years.
During that time we took vitamins and ate right, rarely seeing the doctor except for DAN treatments and the occasional strep throat. I worried about any major issue that would potentially bankrupt us, but thankfully it never came.
This month we have health insurance once again, as I head to back to work to pay for Biomed and survive the recession.
It feels good that I could make a choice of providers and pay my own way.
It is absolutely frightening for me to put my healthcare in the same hands that manage the CDC!

nhokkanen

Bravo, Kim, for attending and speaking. Congrats on your three girls' ability to sit through that meeting.

You ask about the parenting, how do we do it? I agree that we just DO it. Years ago when my son was in his throes of wild tantrums, another mother asked how I managed. All I could think to say was, "Because I have to."

Abandonment is not an option. "Do unto others" and all....

Garbo

Well, I vote we take some of the "provide for the common defense" money and slide it over to "promote the general welfare" of ourselves and our posterity. ;-D

Pati C

Someone asked about services for ASD in Canada. This article may explain Ontario's health care services. Each province (state) is different.

http://www.cbc.ca/canada/story/2006/07/07/autism-ontario.html

Georgia Mom

While none of us want anyone to be without health care, there are major, MAJOR issues with this bill and a miriad of unintended consequences. Those reading this are more than a little sensitive to the vaccine issues. As a candidate, Obama himself said he was not in favor of "selective vaccinations". There is nothing in this bill that suggests the government would hesitate to order mandatory vaccinations. And giving the government, ANY government, that much control over our private lives and the health of our children is more than I could ever support. That alone makes it unacceptable. The fact that it changes the IRS code,the Social Security code, and creates several panels of unelected bureaucrats to make our decisions for us - that will no doubt include people like Insell from the CDC and others who share his views on the complete safety of shooting tiny babies full of vaccines for maladies they will likely never be exposed to. There are lots of subjective terms like "appropriate, adequate, quality". As the mother of a 26 year old with autism, I've already been to the mat with the Dept of Education on those nebulous words that turn out to mean "minimal and meaningless". The choices will be made for us (or against us...)I don't want that for healthcare. Anyone who loves someone with autism should stand against this bill. It could make things even worse than they are. We need to start over and craft a bill that addresses the most pressing needs and stop trying to fix parts of the system that really aren't broken.

mlinn

Thanks, Kim, wish we could have all been there to cheer you on even louder. I have to comment on all the folks who "fear" a public option - - I suspect they aren't very familiar with our government or how it works (and doesn't work). The government did not independently mandate the vaccine schedule - - we have the AAP and big pharma to thank for that. True, the CDC and FDA may be inept and incompetent, but those qualities alone would not have created the mess we have now. You can take your pick of the "government screw ups" we have experienced recently (financial crisis, energy crisis, invasion of Iraq, healthcare, etc.) and one by one you can dissect and show that the private sector, special interests, and perhaps an individual psychopath or two were the real culprits, not our overall system of government. The problem lately has been that we haven't had checks and balances in place, and our private sector moral compass was flushed down the toilet about twenty-five years ago.

One of the “public options” often mentioned is to let individuals buy in to the federal civil service program (the one that all congressmen have access to). They enjoy low premiums through private insurers and can’t be turned down for pre-existing conditions. Caps and discrimination for pre-existing conditions need to be eliminated across the board, but what would be so bad about letting other citizens have access to this coverage?

I have access to the federal civil service program but don’t use it because my military (TriCare) coverage is so good. People might be surprised to learn that under TriCare, I choose my own doctors (without pre-authorization, by the way) and my claims are processed by a private sector contractor (not the government). I pay $1000 per year in co-pays, and once I reach the cap (usually in 6 months) I don’t pay anymore. My government health care system never forced me to get a vaccine for my kids--that mistake was made through my uninformed personal choice and the recommendation of my brainwashed private practice pediatrician (no government official involved).

The other nice thing about TriCare is that I can complain directly to my congressmen and Senators when things aren’t right, and they can take action to fix and improve it at the federal level (and they have).

I guess the bottom line point I want to make is that the primary difference between “government” healthcare and private insurance is the profit motive. So the question we need to be asking is how much benefit to society as a whole the profit driven system really provides, and what alternatives, in the forms of checks and balances, can be adopted to improve the system overall.

Lisa

Wow, Kim! You have guts - I would never attempt to take my son to such an event and he (technically) only has an "Asperger's Diagnosis" (because he regressed late at age 4 and therefore had a decrease in language rather than a "delay").

GOOD question.
I personally believe there is NO WAY autism will be covered in any national health plan in any really helpful way - it is just TOO expensive: as we all know first hand. Single low income mom's need cell phones, you see!

PhillyLisa

Garbo, it's my understanding that most seniors are happy with Medicare, but it's going bankrupt, as is social security, as is the postal system. How do we sustain all these great programs and then add millions more uninsured into the system? It's obvious we need change, but there has to be a better solution.

mom4truth

Go Kim!!!!
Thank you (and your family) for sacrificing an evening so you could ask a very important question of Congressman Himes, and so a roomful of people could witness his answer. Just awesome.

If we could clone Kim, we'd end the autism epidemic in a week.

cj

My family has been very fortunate that most of my daughter's private ABA session were covered by insurance....Can't say the same for the DAN stuff...This was with the help of a consultant my husband's company hired last year. Again I know we are very lucky...I also attended a meeting last week with Congressman Himes in Fairfield County. I don't know, jury is still out for me on this topic. However,it's a bit unsettling to me that he is just learning of the financial devastion a lot of spectrum families face...where has he been?Thanks for speaking out!

Libby

To the mom who asked about health care in other countries. I'm a US citizen, but have had the unfortunate experience of having emergency medical problems arise when I was traveling in Canada, France and Switzerland. In all 3 cases I received excellent, prompt care and it was all completely free. I was grateful for their system on each occasion I used it.

I lived in Switzerland and there were private and public doctors. The private made housecalls and were reasonably priced. The other was in clinic and free.

We currently have community libraries, fire fighters, social security, etc so I really don't understand the 'socialism' arguments. We already have these things in our country and we are definitely not a socialist country. Ensuring that everyone has access to some sort of healthcare can only make us a better country.

Garbo

Just out of curiosity, Bob Moffit -- as you are 70, do you get Medicare? And how have your experiences been in terms of availability of care and costs?

Personally, I think our post office is amazing -- they pick up a letter at my house in CA, and deliver it to my mom's house in FL, for only 44 cents, in about four or five days. Six days a week! I daresay, if they charged what FedEx or UPS charge, they'd be making a big profit too--that would go to their shareholders!

The thing I don't understand is why big business isn't more behind a public option. They would be so much more competitive in the long run if they could get out of being the middleman for health care.

Bob Moffitt

Here is a site that I found extremely "educational" on the entire issue of pending health care reform.

https://www.madashelldoctorstour.com/Mad_as_Hell_Video.html

It is about an hour long...but...well worth the effort if you are as uncertain and confused as I am about what "is" and "is not" being proposed. What "should" and "should not" be covered. And..."why".

Fair disclosure, while this site appears to be "pro-health care"....and...I, personally, am OPPOSED to our President's proposals as they stand today....I found myself (reluctantly) agreeing more than disagreeing with the information they give.

This site highlights MANY things that I had absolutely no idea were "routinely" contributing to rising health care costs.

Here are the reasons I presently oppose the President's health care proposals.

I am 70 years of age...I have witnessed the collapse of our public school system to the point where graduating students cannot read or write intelligibly. I see everyday our US post office, even with their clear advantages in US mailing regulations.. LOSING millions of dollars to PRIVATE CORPORATION..FedEx and UPS...that provide more efficient, faster, service.

In NY State...(OTB) Off Track Betting...LOSES money...even though THEY WIN when the BETTOR LOSES...and...THEY take a "cut" when the BETTOR WINS. How in God's name do they manage to LOSE money????

Having now ranted...Kim was right on the money when she mentioned the amount of money "squandered" by pharmarceutical companies on MARKETING AND PROMOTING their products....rather than...research and development they claim causes the prices of their drugs to be so high within the U.S.

Please, if you are as confused as I am..visit this site and watch the video. It is about an hour long.......

Tara

A government option would lead to univeral healthcare because private companies would not be able to compete with public money. They have said as much.

You can not just try a public option and see if it works, because once a social program like this is started, it is nearly impossible to get rid of.

Just because a person does not agree with a public option does not mean that they disagree with change. There are other plans and ideas out there but this democratic congress will not consider these other ideas. Why aren't they sharing all the options that are out there?

Why would we want to change to a system that we already know would have problems? We can see these problems by looking elsewhere and learning. Why not just fix the problems that we have?

Why don't we make health insurance independent of employment? Why don't we allow businesses to give money to people to pay for healthcare? Why don't we make it so no one can be turned down for pre existing condition? Why can't we make sure no one is turned down who has something such as autism? Why would we have to have a government option to make these things happen? We know what the problems are, so why not just fix them? Why are they making it so difficult? There are lots of other ideas out there that are worth hearing.

samaxtics

Universal Health Care Message to Americans From Canadian Doctors & Health Care Experts

http://www.youtube.com/watch?v=DXXBCFnhsUc

The Canadian Healthcare System costs about 10% of the GDP and everyone is covered.

The US Healthcare System costs about 15% of the GDP and is forecasted to go up to 18% in the next few years but not everyone has coverage.

31 cents of every dollar goes to administrative fees. In Canada, administrative cost is 1.1 cent of every dollar.

Furthermore, universal healthcare does not equal forced vaccination. Enshrined in the Canadian Constitution is the guarantee that medical procedures, such as vaccination, cannot be mandated. So the issue is not about the healthcare system but about the government recognizing the rights of its citizenry.

I won't even talk about the seniors who would come by the busload to buy their meds when I lived in a Canadian border town.

Angie

Kim, I agree, I dont understand when some regard 'socialism' as what a public OPTION would be..I mean, if thats the case, then I probably dont have enough room here to list all of the other 'socialist' things going on in this country..LOL!
I think its time to DO something, anything, because the longer we wait and try to figure out a 'perfect' idea, itll be waaaaay to late, because as it stands right now, its waaay too late! ;0

Angie
Mom to Ethan, Alex, and Megan

Angie

Do we have any friends around here that post that are from Canada or France, or another Country that has Universal Healthcare that can fill us in on what their insurance covers in regards to Autism?

Also, I havent read the comments here yet, I wanted to write my question before I got pulled away (which always seems to happen whenever I have something good to say! LOL!)...

I am kind of conflicted on a public option for healthcare, I mean, in very simple terms, what HAS been happening HAS NOT WORKED, so we NEED to try something else, why not try it and check it off of the list. If we continue to debate and fight for what each 'party' thinks is right and just DO SOMETHING, ANYTHING at this point to GET THINGS MOVING...because, if we dont try it we will NEVER know the outcome...good or bad. As a Nation, I feel we are TALKED OUT of this healthcare debacle, I mean, its been the platform for elections for as long as I can remember (I think Im still considered a youngin' at 32), but still thats a LONG TIME! I have a deep down worry no one in DC really wants to 'solve' this problem for fear of not having a good platform to run on...something that isnt as 'emotional' as abortion/gay marriage/other important issues which all seem to be overcast with Healthcare...of course, Healthcare is very important, but I am sure all of you can understand what I am trying to say..hopefully..LOL!...

Even if we make changes on Healthcare now, and they are great, and work beautifully, there will always been room for improvement, whether its considered to be 'working or not'...so I guess, my thoughts...JUST DO SOMETHING!!! DO DO DO! Not TALK TALK TALK!

ARGH!

Angie
Mom to Ethan, Alex, and Megan

Gatogorra

Thanks so much for speaking out. I agree with you that the healthcare system in the US is broken so we have to make a considered decision and change it. Something's got to give.

One of the first things that came to mind when I was pondering universal healthcare in the US was privacy issues as many have brought up. But I realized that the impetus to invade medical privacy and sleuth out health conditions are all industry driven MOs at this point. Who really wants employers to keep out workers with health problems or workers whose family members have health problems... even more than the employers themselves want perfectly healthy worker bees? Private insurers of course. They would prefer never to have to pay for a chronic condition through a group employer policy and are motivated to supply employers through whatever sleazy means with information on employees health. With universal coverage, you get healthcare anyway, the employer has nothing to do with it. You get sick and leave your job, it's not as big a deal to the employer-- not really a big enough deal that an employer is going to pay through the nose to buy information on your health to avoid the possibility ( with a single payer system, no one would be offering this information to employers for free).

We would still of course have the problem of pharma writing ghost written studies and trying to create medication algorithms for every illness and inventing illnesses to promote their own possibly dangerous products. But we have that now coupled with the added insult of going broke for the privelege of being defrauded and killed.

In the case that universal healthcare is every instituted but some people don't want public healthcare for themselves, certainly private insurers and private providers aren't going anywhere when there's a profit to be made.

Garbo

I, for one, would welcome a public option, even though I worry about what it means for vaccine mandates and compliance. Two years ago my husband's employer stopped covering dependents. They let us buy in for about $1100/month extra. Now we've lost the insurance entirely, the COBRA is $2340/month, plus the deductibles ($1000) and huge copays for any out of network doctors or labs (like DAN). That's almost $30,000 just for the insurance, not including out of pocket costs. It's more than our house payment. Like you, we don't qualify for individual insurance, and even if we did it might not be any cheaper, and wouldn't cover any more. Without a public option, the insurance companies will continue to pillage. The system is broken. I'm not sure how much faith I have in this administration's ability to fix it, but at least they're trying to do something.

Anon

I'm the mom of three kids, one with juvenile rheumatory arthritis, two with autism. Six years ago I was diagnosed with a brain tumor and since then have had 2 surgeries, and gamma knife radiation, all wonderfully covered by insurance through my husband's job. He lost that job last year and he and I are are in the (as Kim so eloquently calls it) insurance abyss. I desperately need to get follow up scans to see if the tumor has grown back, as it has once already. How's that for preexisting condition? Everyday the insurance debacle continues is a tragedy in the making for me and for so many other people. Truly my life is on the line and it is a life and death situation.

I love this site (I <3 you Kim!)and I long for ABA, OSR, Enhansa, a DAN dr, HBOT, IV vitamin C, etc. But more importantly I long for the chance to live and breathe and be here to raise my children with or without those things. I cannot do that without health insurance to cover the costs of my treatment. I don't want the government to get involved in my healthcare, but right now, I have no other option. Given the choice between a theoretical threat(forced vaccinations) and an actual threat(my brain tumor), I'll be happy to take the gov't option.

Thanks for going to the meeting, Kim, your girls are so beautiful. I always tell my husband they need to check the cute gene for suseptibility to autism with all that autism speaks $$!

Kristin

I also am afraid of the public option. I am not impressed with anything the government has control of and knowing they are not on board medically with us, I don't think this is something that will helpour kids. They can say they won't deny our kids services, but how are they going to pay for it all? They have no idea of the expense of these kids medically. I am afraid we will be denied alternative treatments that work and steered towards pharmaceuticals. With all the help Big Pharma is offering, we should be very cautious.

Julie C

Kim,

Thanks for doing this and shedding light on such an important topic. I do not understand why people are so afraid of a public option. My friend’s husband is active duty military and under Tricare they pay zero premiums, have very small deductibles, get intensive ABA covered, and get a great deal of supplements and biomedical tests covered. My parents get Medicare and pay about thirty some dollars a month (each my mom likes to remind me) and get pretty much unlimited healthcare. My husband and I pay $1,000 per month (down from $1,300 per month last year) for a group plan and we have a $1,000 per person deductible. The insurance company pays NOTHING for my daughter’s intensive ABA, supplements or biomedical testing. In January my daughter was scoped at Thoughtful House and the insurance company to date has paid for none of it even though our plan is a PPO with out of network benefits.

Seems to me like the public options above are the only ones who are taking into consideration what the patients need rather than the profits of their shareholders, and the compensation of the insurance company CEOs. I can understand people being afraid of leaving it up to the government since they are the ones who messed our kids up with vaccines but remember that was the doing of Big Pharma in bed with government officials and a lack of transparency. Why should we now let Big Pharma AND the insurance lobby alone determine the future of healthcare policy? Actually isn’t that how we got into this for profit healthcare mess in the first place?

Summer

That's great and all, but what does that mean? Govt care is not what I want for Lauren, my other children or my grandchildren. The Govt's care is what damaged Lauren. Privately funded research on natural detoxification is what got Lauren walking, talking and not needing a special diet or special therapy.

What does including my kid really mean? Are they going to put them all on a DAN protocol that hasn't been revisited for years in the name of research? Does that mean free physical therapy to force kids who have hypotonia due to metal-laden muscles to do things that they can't do until the metal is clathrated (my first choice) or chelated? If I don't want to have my child doing their treatment, do I have the option to go elsewhere?

No doctor that I have been to seems to understand what my kid needs - let's pump her full of Vitamin A when her liver can't take the cod liver oil, or give her DMG when she can't metabolize it, or give her all these things to cope that cause her more harm because they still don't get it.

Andrea

Wow Kim...You sure are something special. Thanks for attending the meeting and standing up after channeling Horshack (LOL) and asking your question. I'm sure you left quite an impression on your congressman and the entire room.

Completely Off the subject, but I have always wondered how your three girls get along with each other? How do they relate to each other, or not relate? I don't know why but when you write about doing things as a family I wonder what it's like for them in relation to each other. I hope you will write someday about them in that way. They obviously have to be great kids- look who their mom is.

Stagmom

Thanks, Anne. And I'm glad you're sharing your thoughts.

Here's what I think. No has to be on the gov't sponsored option if they don't want to be. It's a fallback position. Just like in CT I don't have to be on Charter Oak - but it will be there if I need it.

And healthcare is more than just autism. Most of our readers have other kids who need care for broken legs and dental work and diseases for which we do have excellent treatment and care. Then there's mom and dad's health. I'm no good to my kids if I get cancer and can't afford treatment.

It's a monster sized issue - I agree. I don't think we can allow fear to prevent us from changing a system already badly broken.

Optional. Optional. Optional. Believe me, I'm not 100% thrilled with what I'm hearing and I'm not naive or one sided enough to think everything this administration does will be perfect or even good. I'm far more middle of the road than that.

I'm so glad people are commenting with their genuine felt thoughts and opinions.

Thanks. KIM

anne

Kim,
I admire all you do, and love your posts but my gut feeling tells me the "government health care option" will be even more of a disaster than what we already have. Personally, I don't want the government telling me what I can and can't do with my kids. They need to stay out of my decisions. Obama has stated he's not for choice in vaccinations, so I personally feel my options as far as using "alternative treatments" (which have healed my children) and choosing the vaccine schedule I'm comfortable with will be severely limited if this all goes through. Plus, our taxes will go through the roof, as that's the only way they can hope to cover even parts of their proposals. That leaves less money in my pocket to pay for treatments that work. I hope I'm wrong, but I don't think so! There are definite problems with our current system, and we need to fight for coverage for kids on the spectrum but government takeover is not the solution. I'd much rather see them fund a study on the vaccinated vs unvaccinated populations.

henry martocchio 813 graham rd so. windsor ct 06074

To all my other Parent Advocacy’s please start emailing all those in powered by the people and let’s make the Constructional State go from been rate as 26 out of 52 worst states to live in for Autism Services. Two day ago I was told that not only have I lost DDS (Department of Developmental Services do to budget we lost 400 case mangers)
but after January 2010, I will not have DFC Voluntary Services (Department of Children and Families)any more, thanks’ to PA 09-115—SB 301. “As the state of CT put their budgets on the back of Special Needs Children and the Families”.
As of today we know the Conn is not in Compliances with the matters of P.J. Case of inclusion for our schools. Conn EDU still has not truly addressed what a Appropriate Education is that allows the Towns to do what that feel like on Our kids IEP`s.. The Facts are our kids IEP are one of the most Hardest Fights we are making and allows the Towns put their budgets on the back of Special Needs Children.

As most of you know I am in the Conn Family Courts and the Rate of divorcees are 4 out 5 families with Special Needs Children will be divorces. In time, their will be 1 out 100 or even higher, adults in the Conn courts will fall under the ADA laws. The way I see it, that is going to cost the Tax Payers of Conn more that simply Health Coverage and the cost of Great Education and not just an Appropriate Education. That in most cases would give us the tools to teach our kids Right from Wrong.
I would like to ask you to take a look why the PA 09-115—SB 301 should include the wording Proven CAM Therapies for autism. (Please Google) As these therapies are some chose I have seen more progress with my son than ABA Therapies. (Applied Behavior Analysis) As ABA does not work for all children and there are more Therapies that would not be covered by this PA 09-115—SB 301 that is working for Nathan and other children. Things like RDI Therapies (Relationship Development Intervention) - DIR/Floor time (Developmental, Individual Differences, and Relationship-based approach) would never bee covered under PA 09-115—SB 301. For more info look at http://autism-therapy.suite101.com/article.cfm/autism_therapy_choices. As these therapies only work on Behaviors, Relationships, and Individual Differences in-which you take away one then the parent would have to pay for the others out of pocket.
As the next problem with PA 09-115—SB 301 does not cover at all recovery of a child with Autism Spectrum Disorder through biomedical interventions. As there is No Cure for Nathan there are many of his body problems that do have an affects on his brain and behaviors’. As of today, I am working for Recovery from Autism for my son and it has been all out of my pocket and I do have the data to show the improvements in Nathan. To understand Biomedical interventions please http://autism.com/medical/research/biomedical/biomedical.htm .
With Mass. having the Right Programs for Autism call the LADDERS Program ( http://www.ladders.org /) or even better is the Autism Research Consortium http://www.ladders.org/pages/Autism-Research-Consortium.html that do they believe that you must treat the body first, then the mind and I can not get out of state insurance coverage. Why is that?
My deepest hope is that you will help Nathan by amending the PA 09-115—sSB 301 to add the Wording of The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on the diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine. http://nccam.nih.gov/health/whatiscam .

For those Parent Advocacy Please start bring these issues up to with those in powered by the people and hopefully they will start to hear us. This is one fight that we need to work as one.

I have started working on the Judicial Matters that concern me by emailing all the Law Collages that have help make the ADA laws in this country and would love some help or input with my letter to them.


Hi my name is Henry Martocchio and I have fully custody of my 51/2 year old autistic boy. I have been in family court for 31/2 years now and I am having problems with Conn Courts and the GAL and they lack of commitment to the 1990 ADA laws and use the right support tool like in the IDEA laws. In the courts making decision In “The Best interest of a child” their no ADA laws, but Attorney General Richard Blumenthal, filed an amicus brief with several other States in support of Tennessee v. Lane and declared the states full commitment to ADA laws, the necessity to protect individuals from Court discrimination and in particular focused on protecting the Parental Rights to Protect Families with Special Needs from discrimination. The State Judicial Branch is not in compliance with the ADA Laws, which has directly resulted in discrimination.
ADA and Rules and Regulations including 28 C.F.R. 35, the US Department of Justice compiled and issued the ADA Title ll and Title lll and with 35.102 makes it applicable to all services, programs and activities provided or make available by public entities. Things like
Neurological Psychological Evaluation, Psychological & Developmental Evaluations or even with out FBA or with no input from any of Nathan doctors, or GAL that do not even know what Autism is and what Problems Parents are facing with our children. I ask how they can come up with “The Best Interest of a Child”
I first want to thank you for all the great work your Collage has done for ADA family’s, but I would like to pick your minds on this matter because this in this next issues that needs to bring change with the Government and to holding them accountable to the 1990 ADA laws or if you can point me in the right direction that would be great. Thanks for your help and time Henry Martocchio

Lisa in Texas

Kim,
Thanks for your courageous and eloquent, to the point comments in the town hall meeting!

Insurance coverage needs to start with AMA recognizing regressive autism/mitochondrial disorders/neuro-immune disorders as (1.) medical disorders and (2.) treatable disorders. Then they need to define acceptable treatment (this will need to be evidence based, which they argue now that biomedical treatment has no scientific evidence to prove that it is effective). At that point, they will define a set of CPT codes for the insurance companies to reimburse for diagnostic procedures and treatments. Many people do not know it is AMA who defines CPT codes, not the insurance companies.

So, with skeletal epigenetic research into this fast growing epigenetic epidemic, it is not likely any of the above will happen soon.

In an ideal world, what AMA defines as experimental treatments would be covered for us all. But that takes years unfortunately. I lost my neighbor in 1983 to breast cancer because she needed a bone marrow transplant. At that time, it was considered experimental and she could not afford it and she died fighting the system.

We need to have our politicians petition NIH and CDC and demand urgent research, which in turn will force AMA to take action.

That is a terribly simplistic view, but all I can post for now.

Thanks Kim!

Angela

Kim - I really wish I shared your optimism.

When you think about it - the government has been a major "accomplice" in the vaccine damage that's been wrought in this generation of children. It's the government who tells you that your children "must" have the vaccines to enter day care or school (and that's not actually the case - something that was never explained to me when I was a new parent).

This is the main reason that I DO NOT trust the government to do the right thing. I do not trust the govt to tell me what kind of care my children can and cannot receive. Had I followed my mainstream ped (who adheres to all the AAP - CDC guidelines) I would have never known my son probably has celiac disease. I would have never known the true cause of his severe allergies (food intolerance).

For me it is not a Republican or Democrat issue either. It was (disgustingly) an R admin that pushed through the Eli Lilly Protection Act. May shame rest on their hearts forever.

The government, made up of politicians, cannot resist the temptation of Big Pharma money. It is just that simple.

There are no easy answers - but one thing I know for sure - don't give the govt MORE power. Make the govt REQUIRE the insurance companies and Big Pharma to do the right thing! Wouldn't that be a whole lot more effective? They won't do it though! Why? Campaign dollars! It's much easier to shift the risk/burden to the shoulders of parents.

Sorry for ranting - I am thrilled that you went to your town hall meeting, if for no other reason than to give voice to the situation faced by so many parents. Bless you for doing so, and for all the work you do here.

Maggie

I just wish our government spent more time worrying about cleaning up the food and water supply and less about making pharma rich. If we all had healthy (non GMO, non msg and all the other crap) food, clean water and air, and no vaccines we wouldn't need doctors.

After reading this piece, I got a really creeped out feeling like maybe you are getting paid for this. Reads like propoganda.

Anne McElroy Dachel

Kim,
Making those very public statements about autism are priceless. "He was shocked to learn about the financial devastation that never seems to end." That says it all.

I'd love to ask this man what he thinks will happen when these children are adults.
He better get used to being shocked about the "financial devastation" of autism.

AND KIM, YOU ARE THE BEST! You're driven by a passion that will never burn out...Aren't we all.

Love,
Anne

Gabriella

As always, thank you Kim. xo

Kathy Blanco

I wonder about coverage for our kids, even if we get it, it will be back to old business, vaccinate them more, tell us we are crazy for saying the gluten casein free diet works (with eyes rolling and crickets churping), that they have multiple bacterial organisms in their guts which affects their thinking and behvior, that they have lyme (heloo Kim, you do live in Connecticut) and need to be tested and treated, that we suspect that our kids have inflammation in their brains due to these infections and toxins, that they are mercury/heavy metal poisoned and need chelation and oxidative stress therapy, and lastly, but not leastly, that we blame you doctors (and lets not the pesticide and chemiical industry go either) for this epidemic of children with serious systemic illnesses, developmental delays.

Is it just me? But, I just give up on allopathy...I would rather I got stipends to walk across the street to a naturopath and or other holistic healer, to a midwife who doesn't cord asphyxiate or giving birth drugs and vaccines.

Ok, I think we should not go broke for major illnesses, for extensive surgeries, accidents where we need to sew back body parts...but for the most part, if you have cancer, they have found sometimes no treatment is better, and mega VIT C in the vein and eating right/ treating infections cures it, and most likely you will die of chemotherapy drugs.

I am sick of these mad men, henchmen, who have done a fine job at being the third leading cause of death in the country. Yesterday, a good friend of ours was laid to rest because of his fight with ALS. I gave him information that I went to lyme conferences where people in wheelchairs were out of them, because all they had was lyme and got treatment...no one wants to hear the simple answer, because expensive therapies, institutions and the like make a buck off of us being sick. Too bad, the wife was a nurse and believed in white coats...that kind of pride gets in the way of being well...sigh...

I want REAL healthcare, the kind where doctors make the decisions, not pharmaceutical reps pimping their drugs on us. I want a realization that less is more, and that nutrition and body host ecology is better for us than a damn pill.

Of course, I ask for anarchy against the whole system, and that is the difference between people, or sheeple in this world....because they actually believe doctors have their best interests at heart...

Apologies to the GOOD doctors, or those healers of our children, but I am only addressing maybe one percent there...

Allison

Kim, you are the BEST! Great Job, I'm so proud of you! Basic health care should be available and children should never be denied coverage.

This bill is highly lacking in individual protections and choice but I don't think staying the way things are is an answer to anything. We have to find a way to make sure our kids have medical coverage and discrimination is never allowed. I think we can fight for our individual rights and choices to be added so that mandates are not a part of the package. Just how to do that is the crux.

You brought attention to an issue so many are facing and the legislatures of the country will not be able to forget we are here and what our needs are because we have voices like yours, Mark's and the girls' to remind them. Good for you!

Stagmom

I'm sorry you went through that. My children go to public school. Provided by the government. Required by law, no less. And funded by all of us even if we send our kids to private school or have no kids. Is that socialism?

Why do people think a public option (option!) is socialism? It changes nothing if you have quality medical care. But if you lose your job, you don't fall into the uninsured abyss.

And my Dad is in the VA system - government run and paid for - surely not perfect, but for him, at 87 it's working very well.

I don't think the talking point "socialism" is accurate for adding another choice to insurance because the current slate has discriminated against, denied coverage to and jacked up rates to impossible levels, endangering companies (GM ring a bell?) and individuals alike.

CT has Charter Oak - run by the state for folks who don't have access otherwise. We have kids programs in S-CHIP. If every state did this, we might not need a federal program. However, many states would rather let their citizens fall off the insurance map than provide an option.

I don't mind dissent -much.... And I do love a good conversation. ;)

Libby

Kim, you ROCK!

We do it because God knew we would stand up and kick as*! Here's how it went "Hey, that Kim over there - she has a lot of spunk - give her three. I know, I know, seems like a lot, but she's one tough cookie. I know she'll do a good job."

And you have. Again, again and again and again......

Kathy

Kim, brought tears to my eyes. How wonderful your girls sat for 2 hours! My NT son wouldn't have made it 10 minutes let alone my son on the spectrum. When my husband was diagosed with leukemia 15 years ago (he died and I'm remarried now with two kids) that was the big question. Did I have a choice but to "do it?" I was hoping I'd never hear that question again and yet I have ... I do it because I love my son ... but the mommy guilt still gets to me knowing what I know today ... it makes me sick there are still kids being injured and so much of the truth was told 10 plus years ago ...

Stagmom

Thank you, Jules. You've been a good friend for ten years now, can you believe it? We were practically teenagers! (LOL! Well, you were!) I can set politics aside when it comes to my kids. That doesn't mean I compromise my ideals. But when you know people as real people, and not just some label or preconceived set of what they "must be" it's pretty easy to move forward.

I'd have gone to the same meeting if President McCain was running it. We've paid over $20,000 in COBRA. We've been denied coverage. The system is broken for many of us, though not all.

We're cowboys with a "can do!" attitude in America. I'd afraid that's getting lost in the shouting.

I'd rather do something and make a mistake than do nothing at all. That's always been my personality.

Julianne Boise

Kim,
I LOVE YOU !!!
Although we could not be farther apart politically, I marvel at your unwavering courage, strength, and determination. You are amazing.
Your girls and Mark are very lucky ... and those of us fortunate enough to call you a friend are equally blessed : )

Teresa Conrick

Go Kim! All of the "these guys" need to hear from us. Thanks for pushing these issues and let's not forget that we want to stress MEDICAL vs MENTAL health services for autism.

Stagmom

Angela, there are lots of questions, that's for sure. A public option would be just that - optional. We already have vaccine compliance issues - states are tracking vaccine registries, schools require records, etc.

Our seniors are satisfied with Medicare. And Medicaid is public insurance, but it is administered by the "regular" insurance companies, Aetna and United Healthcare and Connecticare in CT for instance - so you have similar benefits, exlusions and requirements, for better or worse. My folks get their social security check on time each month, the US Post office got an AoA t-shirt to Norway in 3 days and we have the best military on the planet - all gov't programs.

I feel like we have to let go a bit, start something new, and then change it as we need to - the status quo is just not viable.

I want portability, no pre-existing conditions, no ability to kick you off when you get sick and affordable premiums.

This is America - we WILL come up with a good option. We're innovators.

Angela

Great job Kim!

I keep wondering - if a new health care "regime" is enacted - will we still be able to seek out "alternative" medicine?

Will participation in the "public plan" (if any) be contingent on vaccine compliance?

I don't want my government deciding that holistic health care is "untested" and therefore rendered non-existent (by lack of funding and ultimately patients who are forced to participate in the "public" option due to finances).

And how will the government protect a person's confidentiality? What if you get labeled under a condition for which you are eventually healed? Will that "haunt" you for life?

I just don't trust the government - yet I detest insurance companies too. We are stuck between a rock and a hard place.

Theresa Cedillo

By the Grace of God Kim - and sheer will and determination.

Congratulations too because that is no easy feat with three children on the spectrum seated behind you! Super Kim!

dugmaze

Good Job Kim.

Thank you so much.

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