I'm very excited to read this. This bill is only for NY right now, but as parents we can take this to our states and make a difference. To see something getting national attention, and to see a wide range of groups standing behind A-CHAMP on this is great to see.
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A-CHAMP FORMS COALITION TO REFORM INSURANCE LAWS FOR COVERAGE OF "AUTISM"
To Take Action on NY's Insurance Bill for "Autism" Click Here
For Member Organizations of the NY Autism Health Insurance Coalition Click Here
A-CHAMP supports insurance reform legislation that requires health insurance coverage for treatment of autism spectrum disorder and related conditions. In New York we work with and support a coalition of organizations that advocates for the enactment of Assembly Bill A. 699 and its companion bill in the Senate S. 784. You can obtain a pdf file containing the text of the bill by clicking here and supporting legislative information by clicking here.
We have witnessed too many horror stories where insurance coverage was denied for a person with “autism” because the insurer deemed the treatment to be for a “mental health” condition excluded under a policy of insurance. There exists a paradox in the evolving understanding of the etiology of autism – emerging research shows that the disorder is biologically rooted while the old paradigm in medicine, psychiatry and psychology views autism as a psychiatric disorder defined by the Diagnostic and Statistical Manual of Psychiatric Disorders IV ("DSM IV"). All too often, a biologically based problem related to autistic spectrum disorder is dismissed by health insurers as a mental health disorder and coverage is denied. Therapies utilized to treat autism such as Applied Behavioral Analysis ("ABA") and others are similarly denied coverage. Whether it is for treatment of a physiological condition or for a recognized behavioral intervention, insurers use the “autism” “mental health” exclusion to avoid paying claims.
This practice must end. A-CHAMP's view is that "autism," whether viewed as a mental health disorder or as a biological disorder, warrants insurance coverage. Our position is in accord with the position of leading professional organizations such as the American Psychological Association ("APA"). In testimony before Congress the APA supported enactment of legislation that would mandate coverage for disorders that are currently defined under the DSM-IV or the International Code of Diagnosis 9, such as "autism." In A-CHAMP's view “autism” must be covered, however defined and treated, as long as the treatments have a sound basis in medicine and/or psychology.
The cost of services and supports for individuals with the group of disorders labeled autistic spectrum disorder is large and rapidly growing. Our nation is only beginning to struggle with the looming problem of financing the costs of supports and services for those with disabilities. There is universal agreement that early intervention can reduce the long-term lifetime costs of caring for an individual with a neurodevelopmental disability. Denial of insurance coverage blocks early treatment options for most families. A sound policy mandating insurance payment for autism treatments when children are young and can be helped will reduce the long-term costs that must be borne by society through Medicaid and other government programs.
We at A-CHAMP know the frightening statistics regarding costs of the autism epidemic. Some statistics suggest the costs for lifetime supports for a person with autism will be at least $5 million including a study completed in the United Kingdom several years ago, although we believe the cost will be far greater – exceeding $10 million for a lifetime of care (see an illustration of how these costs are calculated here). For a comprehensive government report grappling with some of these issues see the American Council on Disabilities recent report Long-Term Services and Supports: Financing and Systems Reform for Persons With Disabilities.
Financing health care for people with autism will save money in the long run. More importantly, it will help persons with autism lead better lives. Enactment of a New York bill that ends health insurance discrimination will be a big step forward for all persons with autism.
Saturday, February 25, 2006
Thursday, February 23, 2006
Statement from Congressman Dan Burton (R - IN)
Recent statement on the floor of the House of Representatives by Congressman Dan Burton (R-IN)
KEEPING MERCURY OUT OF VACCINATIONS
(House of Representatives - February 16, 2006)
I think that it is good that they are telling the American people that. But at the same time that that is going on, our health agencies are allowing mercury to be put into almost every vaccine an adult gets and many of the vaccines that children get.
The interesting thing about it is that it has never been tested. You might say it was tested back in 1929, because they said they tested it on 27 people that had meningitis. All of them died from meningitis, but none of them died from the mercury they were being injected with. But they died anyhow from the meningitis. There wasn't enough time to find out about the neurological problems that might ensue because they were having mercury injected into their bodies.
We have gone from where 1 in 10,000 children were found to be autistic to one in 166. It is an absolute epidemic. We have also seen a tremendous increase in people that have Alzheimer's and other neurological diseases. Yet we continue to allow our health agencies to allow the pharmaceutical industry to put mercury into the vaccines going into every single human being into this country, and in particular our military personnel overseas.
It does cause severe neurological problems when it is given over a long period of time. Your brain accumulates this mercury. It doesn't chelate out of the body in a very efficient way. So if you get 10 shots, that mercury stays and keeps building up, and it gets worse and worse as time goes by. The health agencies know this is a problem, and yet we continue to allow mercury to be put into these vaccines.
It can be done. This Thimerosal is supposedly a preservative. If we go to single shot vials, which don't cost much more than the multi-shot vials being used, you can take the mercury out of them because you don't need that preservative in there, you don't need that kind of purifying agent, if you will, in that vaccine.Thursday, February 16, 2006
Oregonian: Autism in students up sharply
Fewer students are being reported with specific learning disabilities
Thursday, February 16, 2006
STEVEN CARTER
The Oregonian Students in special education, led by a surge in children with autism, have risen to about 13 percent of public school enrollment in Oregon, new state figures showed Wednesday.
The count of children with disabilities, done each December for the federal government, showed 79,913 between birth and age 21, up nearly 750 from a year earlier.
Children diagnosed with autism, a brain disorder that disrupts a child's communication and social skills, jumped from 5,070 in 2004 to 5,637 in December. Over five years, the number of autistic students rose by 67 percent.
In the same period, Oregon students with specific learning disabilities -- the most common classification in special education -- declined by more than 10 percent, from 33,604 to 30,118.
Educators and researchers cannot fully explain the sharp increase in autism, which also is reported in other states.
"We wish we knew exactly what is going on," said Dr. Bob Nickel, a developmental pediatrician who heads the Autism Training Network at Oregon Health & Science University.
Nickel said one reason is that the autism spectrum has been expanded to include more symptoms and behaviors, and another is that educators and doctors are getting better at diagnosis. The medical and educational definitions of autism are different, but often occur in tandem.
But Nickel said better diagnosis and a wider definition cannot explain the entire increase. Some researchers suspect environmental factors may be a culprit, he said.
"The prevalence in autism has increased around the world," Nickel said. "And the increase has been seen in countries with various levels of environmental concerns. We are a long way from understanding this."
Eric Richards, state director of special education, said Oregon has responded with more training of specialists and has established model classrooms teachers can visit and learn state-of-the-art educational practices for autistic children. The state report also shows that Oregon is educating fewer students with disabilities in separate schools and treatment centers, rather than in regular public school settings.
Five years ago, 2,600 Oregon children with disabilities, including severe emotional problems and brain injuries, were educated in schools or treatment centers exclusively for students with learning or behavior problems. This school year, that figure is 1,400.
Oregon spends about $800 million a year on special education and early intervention with children with disabilities, with about 19 percent of that covered by federal government. School districts get most of their special education money from the state -- $11,000 per student.
School districts are not supposed to get special education money beyond 11 percent of their students, but those with a bigger proportion of special education students can receive a waiver from the state for more money.
The state annually collects information on special education for the U.S. Department of Education, which oversees implementation of the Individuals with Disabilities Education Act. But this is the first time the state has released a general report on special education students and services, and is including information on how they have changed over time.
Nancy Latini, assistant superintendent in the Office of Student Learning, attributes the decline in learning disabilities to finding teaching strategies for kids to keep them out of special education. A child has a specific learning disability if there is a gap between his intellectual ability and his achievement.
Working on early grades
Latini said Oregon educators are getting better at bridging this gap in the early grades. For example, a focused emphasis on reading skills can help a child catch up with peers and avoid being placed in special education.
Latini said the decline in separate schools for special education students is due to recognizing that disabled children belong in their neighborhood schools whenever possible. School districts sometimes save money and have greater educational control if they educate students who have been in outside programs, she said.
Inclusion in the general classroom has been the watchword of the Tigard-Tualatin School District special education program for years.
Five-year-old Suzie Duncan-Winn spends most of her day with her kindergarten pals in Nancy Borman's brightly lit classroom at Mary Woodward Elementary School. On Wednesday, she was designated the "star student," led classmates in counting to 87 and then headed the line as the kids filed out for recess.
It wasn't this way when the blue-eyed girl started last fall. She had trouble relating to other children and would shout and disrupt the classroom at inappropriate moments. She had trouble following directions.
"She has really been a success story," Borman said. "She has lots of friends in the class."
One-on-one
Duncan-Winn leaves Borman's classroom twice a day for 80 minutes of one-on-one instruction that hones her academic and social skills. The school uses STAR, a program from Portland State University, that teaches autistic children in a highly scripted manner.
Another Woodward student, first-grader Marcus Zyweck, 6, needs more time out of his regular classroom for intensive work on his autism.
In a corner of a big room called the Learning Center, Zyweck works one-on-one with special education aide Cynthia Sax on following directions and identifying numbers.
Sax puts a number on paper down in front of him.
"What number is that," she says.
He hesitates, then says, "19."
"Yes! One more number and you get the prize," Sax tells him.
Rewards help children with autism stay focused on tasks, says special education teacher Sandy Collins, and are a major component of the STAR program.
Zyweck is improving. At the first of the year, aides covered the window by the station where he works with Sax, because he would gaze at kids at recess on the playground outside. Now the shield is down and he pays attention to his lessons.
"I am so happy to have found this school," said Marcus' mother, Ana Zyweck.
Betsy Hammond of The Oregonian staff contributed to this report. Steven Carter: 503-221-8521; stevencarter@news.oregonian.com
10 Things The Student with Autism Wishes You Knew
this is such excellent information
if you want to pass this information on, please make sure you include the author's info
---------------------
10 Things The Student with Autism Wishes You Knew
By Ellen Notbohm
Author's note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. "Just what my daughter would say if she could," said one mother. "How I wish I had read this five years ago. It took my husband and I such a long time to 'learn' these things," said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child's voice, a voice not heard often enough. There is great need - and I hope, great willingness - to understand the world as special needs children experience it. So the voice of our child returns now to tell us what children with autism wish their teachers knew.
1. Behavior is communication.
All behavior occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely
interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.
Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from "bad" behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don't understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.
2. Never assume anything.
Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can't retrieve it today. Ask yourself:
Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.
Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished.
3. Look for sensory issues first.
A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me.
The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don't understand what you are saying because there are too many noises "in between" - that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.
Ask the school occupational therapist for sensory-friendly ideas for the classroom. It's actually good for all kids, not just me.
4. Provide me a break to allow for self-regulation before I need it.
A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly.
5. Tell me what you want me to do in the positive rather than the imperative.
"You left a mess by the sink!" is merely a statement of fact to me. I'm not able to infer that what you really mean is "Please rinse out your paint cup and put the paper towels in the trash." Don't make me guess or have to figure out what I should do.
6. Keep your expectations reasonable.
That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I'd be better off helping the school secretary put together the newsletter.
7. Help me transition between activities.
It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes - and build a
few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.
8. Don't make a bad situation worse.
I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:
_ Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.
_ Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior.
_ Making unsubstantiated accusations
_ Invoking a double standard
_ Comparing me to a sibling or other student
_ Bringing up previous or unrelated events
_ Lumping me into a general category ("kids like you are all the same")
9. Criticize gently.
Be honest - how good are you at accepting "constructive" criticism? The maturity andself-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.
Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.
Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than
towering over me.
Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.
Practice or role-play - show me-a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away. It helps me if you yourself are modeling proper behavior for responding to criticism.
10. Offer real choices - and only real choices.
Don't offer me a choice or ask a "Do you want...?" question unless are willing to accept no
for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all.
You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life.
Whenever possible, offer a choice within a 'have-to'. Rather than saying: "Write your name and the date on the top of the page," say: "Would you like to write your name first, or would you like to write the date first?" or "Which would you like to write first, letters or numbers?"
Follow by showing me: "See how Jason is writing his name on his paper?"
Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can't. When this happens, I won't get as frustrated if I understand why:
"I can't give you a choice in this situation because it is dangerous. You might get hurt."
"I can't give you that choice because it would be bad for Danny" (have negative effect on another child).
"I give you lots of choices but this time it needs to be an adult choice."
The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I "can do it." Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I've left your classroom.
Ellen Notbohm is author of the new book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media's Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine's 2006 Teacher's Choice Award. She can be reached at ellen@thirdvariation.com
if you want to pass this information on, please make sure you include the author's info
---------------------
10 Things The Student with Autism Wishes You Knew
By Ellen Notbohm
Author's note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. "Just what my daughter would say if she could," said one mother. "How I wish I had read this five years ago. It took my husband and I such a long time to 'learn' these things," said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child's voice, a voice not heard often enough. There is great need - and I hope, great willingness - to understand the world as special needs children experience it. So the voice of our child returns now to tell us what children with autism wish their teachers knew.
1. Behavior is communication.
All behavior occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely
interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.
Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from "bad" behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don't understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.
2. Never assume anything.
Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can't retrieve it today. Ask yourself:
Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.
Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished.
3. Look for sensory issues first.
A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me.
The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don't understand what you are saying because there are too many noises "in between" - that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.
Ask the school occupational therapist for sensory-friendly ideas for the classroom. It's actually good for all kids, not just me.
4. Provide me a break to allow for self-regulation before I need it.
A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly.
5. Tell me what you want me to do in the positive rather than the imperative.
"You left a mess by the sink!" is merely a statement of fact to me. I'm not able to infer that what you really mean is "Please rinse out your paint cup and put the paper towels in the trash." Don't make me guess or have to figure out what I should do.
6. Keep your expectations reasonable.
That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I'd be better off helping the school secretary put together the newsletter.
7. Help me transition between activities.
It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes - and build a
few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.
8. Don't make a bad situation worse.
I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:
_ Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.
_ Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior.
_ Making unsubstantiated accusations
_ Invoking a double standard
_ Comparing me to a sibling or other student
_ Bringing up previous or unrelated events
_ Lumping me into a general category ("kids like you are all the same")
9. Criticize gently.
Be honest - how good are you at accepting "constructive" criticism? The maturity andself-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.
Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.
Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than
towering over me.
Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.
Practice or role-play - show me-a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away. It helps me if you yourself are modeling proper behavior for responding to criticism.
10. Offer real choices - and only real choices.
Don't offer me a choice or ask a "Do you want...?" question unless are willing to accept no
for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all.
You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life.
Whenever possible, offer a choice within a 'have-to'. Rather than saying: "Write your name and the date on the top of the page," say: "Would you like to write your name first, or would you like to write the date first?" or "Which would you like to write first, letters or numbers?"
Follow by showing me: "See how Jason is writing his name on his paper?"
Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can't. When this happens, I won't get as frustrated if I understand why:
"I can't give you a choice in this situation because it is dangerous. You might get hurt."
"I can't give you that choice because it would be bad for Danny" (have negative effect on another child).
"I give you lots of choices but this time it needs to be an adult choice."
The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I "can do it." Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I've left your classroom.
Ellen Notbohm is author of the new book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media's Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine's 2006 Teacher's Choice Award. She can be reached at ellen@thirdvariation.com
Thursday, February 02, 2006
Frustrations
There's a bit of a political bent to this, so I'll warn you now.
I simply cannot wrap my head around the availability for services that are out there for children with cancer, leukemia, diabetes and countless other health problems. Not that these children shouldn't get help, but why isn't there also an autism network that is equal to this? Is it because there are so many kids with autism? Is it because of the fighting within the community on how to effectively treat autism?
I don't know the answers.
I do know that I'm frustrated every time I try and figure out how to convince Derek's insurance to cover anything. I'm frustrated that on one side I'm told a state mandate isn't a good idea because it will make insurance rates rise and I won't get much support on the R's side. I'm frustrated that politically every one wants to push autism back and forth on each other. "It's the school's problem!" one side claims. "But its a mental health issue!" is the comeback from the other side.
WHY is my child's future and how he will function a political issue? What is wrong with this picture? I don't see the R's and D's sparring over childhood cancer, or juvenile diabetes. So why is wanting some help such an issue?
I haven't even been able to write about the parity bill meeting, because I walked away shaking my head. What a mess. It would be great of what comes out of it won't allow autism to be excluded, but even then, I don't see it doing a whole world of good.
What we have is a network of DAN! Doctors who can easily charge $200 per hour, not counting labs. I'd say 90% of health insurance companies won't cover a dime of it.
We've got the Pfeiffer Treatment Center back east, once again huge hourly rate and insurance not willing to pay. Pfeiffer does have a financial help program, I'm not sure on the specifications, but I'm willing to guess that an average family making $30-$50k a year won't qualify, and simply cannot afford those sorts of visits.
We also have the Autism Treatment Network that is gearing up. The plan to be at 6 major teaching hospitals across the country, and I'm lucky, very lucky, to have one less than an hour away. I have no idea what will become of the ATN, and if they will be able to have procedures covered by insurance of if they too are just going to become the next expensive treatment to add to the list.
Sometimes, as a parent, you just feel so lost in all of this. You know in your heart if your child had cancer, or leukemia you could find a multitude of places for help, some even covering most or all the costs. You'd find hospitals and resource centers of support with open arms and willing help.
We have the internet, a few conferences each year that also cost, so you need to decide if that plane ticket and conference fee is worth it, or if its better spent on a DAN! visit or a couple weeks of ABA, and not much else. Its sad, and I can only hope that one day, that having a child with autism isn't a political blunder, but a story of hope, help and a road towards recovery.
I simply cannot wrap my head around the availability for services that are out there for children with cancer, leukemia, diabetes and countless other health problems. Not that these children shouldn't get help, but why isn't there also an autism network that is equal to this? Is it because there are so many kids with autism? Is it because of the fighting within the community on how to effectively treat autism?
I don't know the answers.
I do know that I'm frustrated every time I try and figure out how to convince Derek's insurance to cover anything. I'm frustrated that on one side I'm told a state mandate isn't a good idea because it will make insurance rates rise and I won't get much support on the R's side. I'm frustrated that politically every one wants to push autism back and forth on each other. "It's the school's problem!" one side claims. "But its a mental health issue!" is the comeback from the other side.
WHY is my child's future and how he will function a political issue? What is wrong with this picture? I don't see the R's and D's sparring over childhood cancer, or juvenile diabetes. So why is wanting some help such an issue?
I haven't even been able to write about the parity bill meeting, because I walked away shaking my head. What a mess. It would be great of what comes out of it won't allow autism to be excluded, but even then, I don't see it doing a whole world of good.
What we have is a network of DAN! Doctors who can easily charge $200 per hour, not counting labs. I'd say 90% of health insurance companies won't cover a dime of it.
We've got the Pfeiffer Treatment Center back east, once again huge hourly rate and insurance not willing to pay. Pfeiffer does have a financial help program, I'm not sure on the specifications, but I'm willing to guess that an average family making $30-$50k a year won't qualify, and simply cannot afford those sorts of visits.
We also have the Autism Treatment Network that is gearing up. The plan to be at 6 major teaching hospitals across the country, and I'm lucky, very lucky, to have one less than an hour away. I have no idea what will become of the ATN, and if they will be able to have procedures covered by insurance of if they too are just going to become the next expensive treatment to add to the list.
Sometimes, as a parent, you just feel so lost in all of this. You know in your heart if your child had cancer, or leukemia you could find a multitude of places for help, some even covering most or all the costs. You'd find hospitals and resource centers of support with open arms and willing help.
We have the internet, a few conferences each year that also cost, so you need to decide if that plane ticket and conference fee is worth it, or if its better spent on a DAN! visit or a couple weeks of ABA, and not much else. Its sad, and I can only hope that one day, that having a child with autism isn't a political blunder, but a story of hope, help and a road towards recovery.
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