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My husband poked me and gave me a significant look when the word "autism" popped up in Bill Clinton's speech last night. Here's what Mr. Clinton had to say:
I will never forget the parents of children with autism and other severe conditions who told me on the campaign trail that they couldn’t afford health care and couldn’t qualify their kids for Medicaid unless they quit work or got a divorce. Are these the family values the Republicans are so proud of?This was the second time autism had come up at the convention. Hillary had brought up the subject only the night before:
I will always remember the single mom who had adopted two kids with autism, didn’t have health insurance and discovered she had cancer. But she greeted me with her bald head painted with my name on it and asked me to fight for health care.In both of these cases, the Clintons mentioned autism as if it were an illness that could be treated and cured through medical means - and that the medical tools needed to cure autism would be covered under publically available medical insurance. The idea was "if only these folks had a decent HMO, everything would be just fine."
It's a lovely thought.
The reality is, though, that even had the Clintons been successful in instituting universal health care in the United States, it's highly unlikely that it would have covered most of the treatments recommended by medical professionals for children with autism. The very best private medical insurance may cover physical, occupational and speech therapy plus some amount of Applied Behavior Analysis. Most insurance programs don't cover anything like all the expenses for those therapies - and surely universal health care would never mirror the very best PPOs available.
And even if those "medically approved" treatments were covered, parents would still, most likely, be shelling out cash for additional therapies, services, and education. Many children with autism, in addition to the therapies described above, also receive - for example - sensory integration therapy, play therapy, social skills therapy, and, in many cases, a variety of biomedical therapies ranging from expensive supplements to chelation (removal of heavy metals from their bodies).
Here's the even trickier part: the choices as to which therapies are most likely to be effective are made, to a very large extent, on the basis of "gut calls" by parents and providers. There is, as yet, no good way to know whether little Joey will respond to behavioral therapy, dietary supplements, play therapy, or none of the above. The only way to find out is to try everything until something (or nothing) works.
In my opinion, while it's good to know that autism is now a front-and-center condition, I find it hard to believe Bill nor Hilary (nor Obama nor McCain) really have an idea of what would make a difference for families living with autism.
The implication in both the Clintons' speeches is that decent health insurance would make all the difference. For many disorders, that's absolutely true. I can't help but feel, though, that autism was the wrong disorder to choose when discussing universal health coverage. Unless and until we have the information available to know what will work for whom, health care is only a very small part of the autism puzzle. By far the biggest part of the puzzle is knowledge - knowledge we've barely begun to build.
While I agree that having having universal coverage would not make “all the difference,” I do feel it would make a significant, palpable difference for families.
We have supposedly “good” health insurance, a PPO. But NOT ONE of our autism service providers (speech, OT, the psychiatrist who prescribes medication so my son can sleep and even our neurologist) will accept insurance because the insurance companies made it so difficult to get payment. We pay up front, submit the bills and sometimes get reimbursed and sometimes not. We always max our out of provider limit. But still, I am grateful for this coverage and know we are lucky compared to many other families.
We also faced the reality of what losing this insurance could mean. My husband’s company went through around of layoffs last year. I asked on a local autism list serve about getting new insurance for my son, either privately or through a new company if my husband got a new job. The emails I got broke my heart. Almost all kids were denied insurance because autism is considered a pre-existing condition. That would leave Medi-cal, which will not pay for much here in cash-strapped California. My son broke his arm 3 times in one year, with the last break fixed by an extensive and expensive operation. It cost more than $20,000. I hate to think what would have happened if we had lost our insurance, been unable to get new insurance and had to pay for all of those costs.
I know that far too many families know what it’s like to fly without the parachute of even half-way decent health insurance for their autistic family member.
For them and, quite honestly, for us, better, secure health insurance is not a very small part of the autism puzzle. It is a big worry that for me looms larger each day in this unstable economy. In fact, I’d put it in the top three of autism-related categories of things that keep me up at night.
I am a realist. I know universal health care won’t solve our problems. But really, it would be a huge help, a significant piece of the puzzle put in place.
You’re right. No doubt about it. My family’s two autistic honeys have insurance that covers ear infections, bumps and scrapes and all that, but no speech or OT or ABA or anything else. I do have better than we used to have–used to have Blue Shield which didn’t cover anything with the autism diagnosis, even being diagnosed. Our new, Cigna, covers diagnosis and any reasonable tests to diagnose (like MRI, gene analysis to rule out other possibile problems, and such). So thanks for that, but since we all know the schools give exactly the minimum speech required if at all, how much further along would our kids be if we could get real speech therapy and they started speaking in (gasp!) sentences? Or OT and they could even feed themselves? We’re the groups that are hot politically now, but we’re all still falling between the cracks.
It’s nice to talk about coverage for “kids” with autism. That’s a nice political hook and buzz. Nobody is talking about one of the biggest issues which is what is going to happen when the hundreds of thousands of kids with autism become adults. How will they be taken care of, where will they live, what will their lives be like… It’s going to start hitting the fan during this next presidential term…
c
In addition, we desperately need more services for adults with autism! Job coaching, supported living, social skills training, etc. Health insurance won’t touch these. Nevertheless, universal health coverage is an important start.
My daughter lives in the state of Maine, and under Maine Care…her toddler daughter is being treated for all aspects of autism and is in therapy 4 days a week. She is married and he is working, she is working part-time too. She is receiving really good therapy and it has helped her significantly~
As far as insurance goes, I am inept at saying what would help or not help. We have insurance and really get minimal help for our son with autism. The bigger problem is the health insurance industry itself, how it labels things, processes claims, etc. That’s what is in need of change. As far as the candidates having any real idea, I know for a fact that the Obama family have personal friends affected by autism who are in close contact. At least on that level, they are learning more all the time.
I think the Clinton’s batted .500…You are probably correct about Bill and McCain not knowing much but I think you’re way off base re Hillary and Obama. She and her staff are quite knowledgable about the medical aspects of autism as well as the need for insurance and life span supports. I support Obama but respect her detailed knowledge about autism.
Obama and his team, who I can assure you first hand are up to speed on a wide range of kid and adult autism issues, produced a platform that was slightly superior in my mind to Clinton’s because it emphasized the “Community Choice Act” (which McCain opposes) and a national “Autism Czar” to cut red tape, among other things. Barack Obama’s close senior advisor, Mike Strautmanis, has a son with autism and is representing Obama on a wide range of autism issues all across the country. However, I’d be surprised if Obama mentions autism tonight and definitely won’t knock him if he doesn’t.
I’d rather hear Hillary talk about health care fraud, which is an $80 billion a year racket in the US.
I just paid $400 out of pocket to get my son diagnosed with autism – using an HMO that supposedly covers PDD diagnosis. I’m sure I have a long road of insurance rejection ahead of me.
Although it would be really nice if ABA and supplemental speech therapy were covered, it would make a ton of difference for a lot of families to have pediatric neurologists and other specialists covered, not to mention reasonable drug plans.
While it’s totally true that health care doesn’t cover all the needs of children with autism, health care + a better education system would cover most of them.
Also, people diagnosed with autism are often rejected for private insurance or excluded from services based on “preexisting” conditions. Getting rid of that clause would make a world of difference.
Autism sems to appeal to the Clintons as a hot topic and they will never know the expenses related. Fortunately we are in Florida and my grandaughter is covered by medicaid. She is on a waiver which supplies her diapers, etc. There is a limit to other services however, such as respite. She is covered somehow, regardless of family income. She gets an SSI check because of the low income. However there is much needed for this child and others like her non of which will “cure” her. There is and could never be any compensation for the love and attention and family strain that revolves around an autistic child. I love my granddaughter beyond measure. She has many other complications such as severe MR, seizures, asthma, hypothyroidism, is 12 years old is not toilet trained, and is non verbal among other things. She is however, a loving child, when it suits her.
No, the Clinton’s have not a clue.
God bless all who have such children when all it seems at times is that we love them. My granddaughter is to me a blessing.
My son was diagnosed with Autism this past February. He has Medicaid. He needs counseling and I did try to get him in to Central Washington Comprehensive Mental Health. However, I learned that Autism is not a qualifying condition. So, we are stuck trying to deal with his anger issues and everything else. Medicaid is good for a lot of things, but it doesn’t cover all health care requirements.
Clintons and Obama may not know yet what it takes to cover autism treatment, but I’m sure they’d be much more willing to listen to our requests than the Republican administrations, because these are more interested in pleasing the health insurance companies.
In any case, the way legislation differs so wildly from one state to the other regarding autism coverage, I wonder how far we could go even if we had lots of support from the federal administration.
My hat is taken off to you.I would love to see you as a speaker in Congress on this matter.You would make a difference.We all need to make a united front on this matter.I know it has been said that we should contact our Congressmen and Senators but it is not happening fast enough.We need an advocate in DC to give a voice that is able to speak on this subject as a parent who knows and has expierenced first hand the problems.I myself live in the country and refuse to put my grandson thru all the tests and therapies that would probably do very little if any good.Until research can give us some answers it is the children that suffer.What can these children be thinking with all these tests that tell them negative ideas and aspects to their condition?Are we sending them messages that there is no hope or true help.Sometimes I wonder if it is not better to just do the best we can and wait until there is proof that these “snake oil” treatments work rather than put some of these kids thru the hell that some have already been put thru.I know there are some that disagree but sometimes parents have better instincts than the so called professionals about what our children need.I have found out thru my own work as to what works with my grandson and what does not.This is without blood drawn,mindless tests and other invasive testing has done.So agree if you wish it is your choice but we have found what works by one on one and not involving others that appear to know little or less than I do with common sense research.
We are our childs best advocate at present.So I say let the doctors treat what is treatable and the rest is left to our instincts and medical research.
I live in Los Angeles and all of my sons services are covered under the Regional Center. There is no need to use my insurance. I believe this is the best way to get services covered. He receives ABA 15 hours a week through the center. Then, through the school district he receives a full time behavorist, speech and OT. So it does not matter if we have insurance or not. The only time I need to use my insurance for him for autism is when he goes to the dentist and needs anesthesia for the procedures…then it is covered by medical insurance.
@Leila….I don’t think it matters if they are Republican or Democrat. Neither party truly understands autism. The autism community is no by no means united. There is no way a political party can be on the issue. It is a dangerous area to tread upon without really pissing off the pro-vaccine or anti-vaccine or pro-chelation or anti-cure groups. I wouldn’t vote for either candidate based on their knowledge of autism.
An apology everyone…I have been duly corrected by my daughter, mother of my grandchild with autism, apparently, my granddaughter was first diagnosed with CP and that is the basic reason for her gov’t help with doctors, etc. But it does cover neurologists, pediatrician, endrochronologist and testing. I am so sorry if this has caused anyone a problem.
We have to start somewhere and historically/socially change can begin with the exposure that politics brings. But let us not allow our children to become used as a stepping stone for anyones political carrer!
Yeah so the Clintons may not know the full extent to what it would take to actually cure our children of autism, BUT isn’t it a start that they are speaking about it and putting it out there so that it will become an issue to insurance companies so they now were not full of crap and see “hey those kids really do need help?” And its coming to those states who don’t have great or if any coverage, I know california is huge in the sutism commnunity to help and my cousin from massachutes has a 10yr son w/ autism and she gets some of the stuff she needs for him covered, he’s doing very well. I live in texas and i don’t have insurance so any medical help my family needs would hurt financially. My son is somewhat high functioning but i know would do better w/ more therapy sessions that he doesnt already get from school. I say if someone wants to shed light on the topic it might make a change for the better. Its a start and if some people have good help somewhere its bound to spread. Look at the knowledge that has been aquired over the years since there has been a study on it and where we are now it may not be as far as cancer studies but somebody is working on it everyday whether it be us parents or teachers, scientist, researchers, DONT GIVE UP HOPE AND SPREAD THE KNOWLEDGE TO EVERYONE!
Shifting the expenditure to the private sector i.e. insurance companies may force them to reconcile their relationship with pharmaceutical companies and their profitable vaccines. Will insurance be as likely to cover all of the vaccs with their questionable ingredients if they have to pay both the upside and the downside of the cost? Currently Autism expenses are borne by the families, the states and their home school districts — FOR LIFE, millions and millions of dolars of local expenditures.
Any plan should also make it impossible for companies who give insurance to “opt out” of autism coverage.
Why is profitable bad? Environmental Companies are profitable? Do you question their judgement? Besides, vaccines have nothing to do with autism.
I have to agree that it’s not really the insurance coverage that will make a difference, but the wording doctors, therapists and insurance companies use. Our insurance company will pay limited amounts for behavior therapy, once we reach our massive deductible. He has a medical card, but it only covers speech therapy. The local mental health center won’t cover anything because according to the state that funds them, he can only have autism and no other issues and they don’t cover autism services, but they cover Asperger’s. It makes no sense and I don’t think any of the people running for office or in office understand any of what our kids need.
I have new respect for Bill and Hillary Clinton for simply mentioning Autism in their speeches.
Bill Clinton could not have been more right. We have ASD twins (now 14) and those early years were so tough trying to get them help. My husband and I had good paying jobs but we earned too much for public assistance, yet we couldn’t afford professional assistance without the help of our medical insurance. At every turn, we were denied. My husband is a firefighter and we pay enormous insurance premiums yet all we get are hassles nearly every time we submit a claim. On principle, I fight every claim through the appeals process, and ultimately, I win. It’s time-consuming and emotionally draining, but it’s what we have to do under the current system. This needs to change!
Autism is a life long neurological condition consisting of deficits in language and behavior, but there are therapies that can help. While insurance companies argue speech therapy and occupational therapy are “experimental” treatments as a basis for denial of coverage, they do cover treatment for other kinds of brain injury (i.e. strokes and head trauma). Logically, they MUST cover treatments for Autism.
I am shocked to hear you are disapointed. I was estatic. I have two boys with autism and we are paying over 1000 a month that we cannot afford on medical care for them and that does not include OT, PT, ABA but dental care, and medications. We make too much to qualify for medicaid but not enough to be able to pay for some of the blood tests that my sons doctor has odered and insurance won’t cover. You have to start somewhere and this is a good start.
Whether insurance covers autism-related treatment isn’t the whole point. The only thing more difficult than caring for an autistic family is caring for a SICK autistic family member. If having coverage means that’s one less worry, it’s worth it. Treatments, like causes, will be debated until we can unequivically identify an absolute cause. Until then, everything I’ve studied indicates more than one cause — meaning that not every treatment will work for everyone. And, for the record, I know of three of my son’s classmates who were directly impacted by vaccines & left permanently impaired. My son was babbling until his shots at 6mos. He cried & stiffened so the nurse had us ’stay a while for observation’. When the effects subsided, they said he was fine & sent us home. After he gradually withdrew & stopped talking, we started speech at 2 1/2. By 4 1/2 he was diagnosed & I discovered that the doctor’s records never notated his reaction to his shots. He’s now 17 & has the social/functioning skills of a 3-yr-old. Insurance covers some of his therapy but it’s better than nothing at all.
I voted for Hillary based soley on her autism agenda. She did not limit herself to just funding the therapies or gene-only research for the cause of autism. Hillary talked about funding research into potential bio & environmental cuases and associated treatments. My five year old little deserves to have every opportunity to overcome this disease. Developing on target for two years…DTP/Chicken Pox vaccination followed by rapid regression. There is no such thing as a genetic epidemic. What man and his science did man and his science must undo!
My vote in November will be based solely on the candidate with the most progressive autism treatment platform!
McCain v. Obama?
Sad that we’re now using Autism as a wedge issue. But, now that the toothpaste is out of the tube, we need to get real…
Saying the word “autism” on the campaign trail is just cheap political pandering. The only meaningful question is what will REALLY happen under the candidates’ proposals.
Dadvocate – I always love to read what you write. I almost always agree with you. …But you cannot be serious about Obama being the best choice for those of us who are autism-concerned.
First, socialized medicine will result in rationing, higher TRUE costs of medical care, and lower quality. Communism has failed every time it has been tried. Merely putting different people in charge will not change that immutable fact.
Moreover, as Lisa asks (paraphrasing), Is the treatment for autism really *medical*?
Do promises of universal healthcare really portend MORE treatment resources for autism?
No, it’s precisely the opposite! There will be LESS (ok, “FEWER” for those English teachers out there) resources available for autism research and treatment!
LESS RESEARCH
I agree that *research* on Autism’s causes should principally be *medical research* (i.e., not geological or cosmological). But research DOLLARS for autism will be SCARCER under universal healthcare because MORE and MORE resources will have to be pumped into patient care at the receiving end. That will leave LESS and LESS money available for research.
LESS MONEY FOR AUTISM THERAPY!!!
Treatments for Autism/PDD include OT, ST, ABA, etc., right? Well, these are not “medical” treatments. You don’t get autism treatment in a doctor’s office.
Because Socialized Medicine will *necessarily* increase the true costs of medical care, it will *necessarily* reduce the resources available for other government social programs, such as early intervention, special education, etc.
With Obama’s universal healthcare, there will be LESS money for special ed, LESS money for state / county early intervention programs, etc.
MCCAIN ON AUTISM
So now let’s be fair and take a look at John McCain’s record and position on autism issues.
Autism concerns have been every bit as prominent an issue on the McCain campaign trail as it has been on Hillary’s/Obama’s.
Ok, we all remember his semi-gaffe about the link between thimerisol and autism:
“It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.” – John McCain
But did you know that McCain supports Federal research – broad research – into the causes of autism, including environmental factors, prevention and treatment.
JOHN MCCAIN CO-SPONSORED THE COMBATING AUTISM ACT OF 2006.
This legislation has already pumped a lot of resources into early detection, promoting ABA and other promising interventions, and creating “Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology.”
McCain is a big proponent of SERIOUS RESEARCH into the cause(s) of autism. In November 2007, he and Sen. Joe Lieberman requested the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed.
MCCAIN vs. OBAMA
It’s not like there are extra dollars laying around. They’re going to be pulled from somewhere to fund socialized/universal healthcare.
Obama’s universal healthcare will absolutely starve resources available for programs like early intervention and special education.
McCain’s HEALTHCARE focus
is on correcting problems with healthcare costs and bureaucracy, NOT adding universal healthcare coverage to the menu of federal nanny-state entitlements.
McCain’s AUTISM focus
is upon real stand-alone autism research. Doesn’t that seem MORE LIKELY to result in MORE resources being pumped into autism research?
Correspondingly, doesn’t it seem more likely that autism research and treatment is going to get drowned out under Obama’s universal healthcare proposal, as scarce resources are pumped into medical care rather than headstart, special ed, and early intervention?!
Finally, I DON’T TRUST Obama Obama to deliver what he promises anyway. Remember when he talked told labor unions he would abandon NAFTA; then he sent his chief economic advisor to Canada and Mexico to “assure” them behind-the-scenes not to worry; that he didn’t really mean it.
If you can’t trust the dude, then all the flowery promises of chocolate and sunshine is meaningless.
Again, sorry to get political. But I just couldn’t let it hang out there un-rebutted that Obama and/or Hillary’s plans would be anything short of a total train wreck for anyone concerned about autsim.
-Bob
(Dad of 2-1/2 y.o. PDD-NOS son, OIF/OEF vet)
McCain v. Obama?
Sad that we’re now using Autism as a wedge issue. But, now that the toothpaste is out of the tube, we need to get real…
Saying the word “autism” on the campaign trail is just cheap political pandering. The only meaningful question is what will REALLY happen under the candidates’ proposals.
Dadvocate – I always love to read what you write. I almost always agree with you. …But you cannot be serious about Obama being the best choice for those of us who are autism-concerned.
First, socialized medicine will result in rationing, higher TRUE costs of medical care, and lower quality. Communism has failed every time it has been tried. Merely putting different people in charge will not change that immutable fact.
Moreover, as Lisa asks (paraphrasing), Is the treatment for autism really *medical*?
Do promises of universal healthcare really portend MORE treatment resources for autism?
No, it’s precisely the opposite! There will be LESS (ok, “FEWER” for those English teachers out there) resources available for autism research and treatment!
LESS RESEARCH
I agree that *research* on Autism’s causes should principally be *medical research* (i.e., not geological or cosmological). But research DOLLARS for autism will be SCARCER under universal healthcare because MORE and MORE resources will have to be pumped into patient care at the receiving end. That will leave LESS and LESS money available for research.
LESS MONEY FOR AUTISM THERAPY!!!
Treatments for Autism/PDD include OT, ST, ABA, etc., right? Well, these are not “medical” treatments. You don’t get autism treatment in a doctor’s office.
Because Socialized Medicine will *necessarily* increase the true costs of medical care, it will *necessarily* reduce the resources available for other government social programs, such as early intervention, special education, etc.
With Obama’s universal healthcare, there will be LESS money for special ed, LESS money for state / county early intervention programs, etc.
MCCAIN ON AUTISM
So now let’s be fair and take a look at John McCain’s record and position on autism issues.
Autism concerns have been every bit as prominent an issue on the McCain campaign trail as it has been on Hillary’s/Obama’s.
Ok, we all remember his semi-gaffe about the link between thimerisol and autism:
“It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.” – John McCain
But did you know that McCain supports Federal research – broad research – into the causes of autism, including environmental factors, prevention and treatment.
JOHN MCCAIN CO-SPONSORED THE COMBATING AUTISM ACT OF 2006.
This legislation has already pumped a lot of resources into early detection, promoting ABA and other promising interventions, and creating “Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology.”
McCain is a big proponent of SERIOUS RESEARCH into the cause(s) of autism. In November 2007, he and Sen. Joe Lieberman requested the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed.
MCCAIN vs. OBAMA
It’s not like there are extra dollars laying around. They’re going to be pulled from somewhere to fund socialized/universal healthcare.
Obama’s universal healthcare will absolutely starve resources available for programs like early intervention and special education.
McCain’s HEALTHCARE focus
is on correcting problems with healthcare costs and bureaucracy, NOT adding universal healthcare coverage to the menu of federal nanny-state entitlements.
McCain’s AUTISM focus
is upon real stand-alone autism research. Doesn’t that seem MORE LIKELY to result in MORE resources being pumped into autism research?
Correspondingly, doesn’t it seem more likely that autism research and treatment is going to get drowned out under Obama’s universal healthcare proposal, as scarce resources are pumped into medical care rather than headstart, special ed, and early intervention?!
Finally, I DON’T TRUST Obama Obama to deliver what he promises anyway. Remember when he talked told labor unions he would abandon NAFTA; then he sent his chief economic advisor to Canada and Mexico to “assure” them behind-the-scenes not to worry; that he didn’t really mean it.
If you can’t trust the dude, then all the flowery promises of chocolate and sunshine is meaningless.
Again, sorry to get political. But I just couldn’t let it hang out there un-rebutted that Obama and/or Hillary’s plans would be anything short of a total train wreck for anyone concerned about autsim.
-Bob
(Dad of 2-1/2 y.o. PDD-NOS son, OIF/OEF vet)
Sorry about the duplicate post! I thought it didn’t upload the first because it was too long.
-Bob
Bob – I agree with you completely that “socialized medicine” (not sure that’s what Obama is advocating, but I know what you mean) is unlikely to do a better job covering autism reearch or therapies than private insurance.
But.
Health insurance money doesn’t pay for pure research. That’s a set of separate governmental pockets. And from all I’ve heard, Bush and Co. have cut all non-military science-related spending to the bone. I would expect a democratic govt. to pump at least a bit more $ into the NIH and related agencies.
What’s more (and this is a toughie) – I do think there’s something to be said for providing the greatest good to the greatest number. We are ALL (even our kids with autism) extremely likely to need access to ordinary, low-cost health care for things like flu, bronchitis, high blood pressure… when those issues aren’t treated for lack of insurance, they turn into desperate illnesses which are then paid for through tax dollars anyway.
Meanwhile, it seems to me that autism issues aren’t strictly health issues at all – and thus need a multi-agency approach. An autism “czar” could be appointed to oversee funding not only for health insurance and medical research, but also for education, human services, labor, justice… However it’s handled, though, autism is clearly not a strictly health-related issue.
Lisa (autism guide)
I live in New York City. My son is now 8 years old. When he was 2 years old, he started early intervention at home, including ABA, speech therapy and occupational therapy paid for by New York State. When he was 4 years old, he started preschool at an ABA school. He received occupational therapy, speech therapy and physical therapy, paid for by New York State. When he was 6 years old, he went to a New York City Department of Education, Special Education (district 75) school. He received their educational approach ( a combination of Teacch, Pecs et.al.), speech therapy, occupational therapy,and physical therapy all paid for by New York City. The NYC Department of Education has been incredibly accomodating to meet all of our son’s needs. They offered him an inclusive first grade classroom last year, which we happily agreed to. At the end of the school year, we requested that he be allowed to repeat first grade, something we’ve heard they rarely allow. No problem. Everything we ask for and many we don’t, are offered to our son. The only thing we’ve paid for over the years, is an after school ABA to come to our home 6 hours per week. I asked our private insurance (1199 National Benefit Fund) to pay for a visit to a Developmental pediatrician. They agreed. Our experience seems to be very different than most others here.
I agree with davidn, our experiences have been somewhat different from most of the posts here. Our child is 4 with PDD-NOS and we have an Aetna HMO and have had to pay for very little expenses out of pocket thus far. Our experience has been a case-by-case basis–meaning we call insurance before any specialized visit (Develop Ped) and get authorized visits. We have always explained our situation to the ins. BUT have also researched our STATE statue on what a disability really is and finding out from our STATE insurance commissioners office before speaking to insurance companies to cover a benefit. In saying that, we understand that autism is a case by case basis and some people require more treatment than others. I am just explaining our experience thus far. I had to comment because I thought it was GREAT FOR AUTISM TO BE MENTIONED AT ANY NATIONAL CONVENTION! It shows that we making some progress. I have personally emailed the OBAMA and MCCAIN caimpaigns concerning autism and have only rec’d a response from the OBAMA campaign thus far regarding this issue. So let’s be sincere advocates for our children and hear what the MCCAIN campaign is going to say at their national convention concerning autism.
Lisa-
I do not disagree with your points – but I will quibble around the edges.
First, I’ll agree with you, insofar as I know the Bush admin. has been SLOW to address Autism. I haven’t heard a peep out of the current administration, in fact.
I’m not clear, but I think you were suggesting that the war on terrorism might have sucked dollars away from medical research (including Autism research). My understanding is that it doesn’t work that way. I used to deal with fiscal law a lot as an Air Force JAG. We were keenly aware of color of money and the warchest was a separate pot which didn’t come through the usual budgetary process from DoD to the Departments, Majcoms, etc. While the cost of the GWOT gets added to the national debt (sadly), it is considered an off-budget item and, therefore, does not result in a reduction in on-budget medical research.
I will defer to your superior knowledge in asserting that Autism research funding has suffered under Bush. I have no information to the contrary. But I don’t think the GWOT is the reason. It may be the emphasis on AIDS in Africa (which has been a big emphasis of the bush admin.), or other priorities.
I’ll go further and say that I would have hoped Laura Bush (a teacher in her past life) might have been a great advocate for Autism, but it seems like it’s not on her radar.
McCain, being more of a maverick in the GOP, seems highly interested in addressing the public health care gap.
I personally prefer the McCain approach because I am a fiscal conservative. McCain’s plan keeps those currently WITH insurance, insured; but addresses portability, non-cancellability, tax deductibility, etc. — which should finally bring market forces into the equation and drive prices down. Meanwhile, for those who are UNDERINSURED or UNINSURED, they will be given a tax credit of $5,000 per year to purchase insurance. Again, encouraging competition which should drive prices down.
The remaining people who fall through the cracks would be addressed through governmental insurance. This way we don’t go down the road of opening Government clinics.
I’m not sure if it’s fair to say Obama advocates “socialized medicine”. Frankly, I can’t tell what, exactly, he is proposing. I have read his platform (on his website) and I came away still not understanding exactly what he is proposing. It sounds like the “magic health care fairy” will appear and grant everyone health care.
I certainly do agree with you that everyone — especially children — must have access to health care. And it must be achieved in a way that does not subject people to crushing medical bills.
We’ll see. Whoever wins, I hope things improve, both with regard to healthcare and autism research.
Best regards,
-Bob
In Pennsylvania, due to the efforts of parents and politicians on both sides of the aisle, we will be requiring insurers to cover autism treatments (OT, PT, TSS etc) for up to $36K a year until age 18. In addition, they have to follow the State’s medicaid guidelines for medical necessity that have been in place and covering our children previously. There are exceptions based on group size so medicaid still is in place, but it is a law the country can look to. So good insurance can work. Give the Clintons the credit they deserve for bringing our common problem to the attention of the convention and thus the national stage.