Thursday, December 31, 2009

An Actual Comment I Got About Autistic Kids

I have had too much time on my hands with the snow days so I commented on an article in a newspaper. I didn't realize there was a direct message function, so this was forwarded to my e-mail. The comment that he made in his post suggested giving autistic kids guns and ammo if they couldn't be institutionalized. The editor has since removed the comment.

"I just want to say I don't mean to hurt anyone's feelings over this issue. I just say what is on my mind and sometimes the truth is hurtful to some. I applaud the devotion and dedication it must take to raise an autistic child, but it's just my opinion that they should be institutionalized and the school tax burden that they cause to skyrocket would deminish. It is no doubt the most difficult thing to ever do, to part with such a child. Tell me why people take them to restaurants to disturb somebody elses peaceful meal?"

I need to get back to work. No more holidays, no more snow days. I have too much time on the Internet with too many people who have entirely too many people who have too much time and opinions. Starting now... going to clean the guest room.

Tuesday, December 29, 2009

What Happens When Autistic Children Become Adults

From the Autism Learning Felt blog. What is most stunning in this entry, in one Florida survey, 74% of autistic adults want to work, but only 19% have the opportunity. The government and communities aren't looking ahead to the future for these kids. Parents... we are just trying to manage the day to day. It also mentioned that ugly institutionalization word again. No job, no group home apparently. I don't want an institutionalized life for my son. He deserves more. I want more. I didn't bring him into to the world for this.

Saturday, December 26, 2009

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

Does "essential benefits packages" mean nationally mandated? Does this mean we can stop fighting state by state? Does this mean Jimmy will get a chance at the care he deserves even though he lives in Virginia?

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

Washington, DC (December 25, 2009) – Autism Speaks, the nation’s largest autism science and advocacy organization, applauds the members of the U.S. Senate for yesterday passing an overall health care reform bill that contains provisions for autism insurance reform, as well as the funding to accelerate the scientific discovery of autism treatments and cures.

The provision for autism insurance reform was introduced in September by Senator Robert Menendez and passed by the Senate Finance Committee with the support of Committee Chairman Max Baucus. The provision will prohibit discrimination in benefits against people with autism by including behavioral health treatments as part of the essential benefits package.

The bill also included elements of the Cures Acceleration Network (CAN) Act, introduced in April by Senator Arlen Specter . Like the CAN Act, this provision of the health care reform bill would create a large new fund for, and focus on, "bench to bedside" research, creating an emphasis on more quickly translating research discoveries into practical medical applications. Autism Speaks was the first disease advocacy group to support the CAN Act.

“We are grateful to Senators Menendez, Baucus, Specter, and their Senate colleagues for passing this health care reform bill, ensuring that families dealing with autism are a part of larger health care reform,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now that the Centers for Disease Control and Prevention has confirmed that autism affects one percent of American children, the need for our legislators to ensure that families can afford the treatments their children need, as well as a redoubling of our federal government’s commitment to science and innovation in the search for a cure, has never been more important.”

“The addition of the Cures Acceleration Network to the health care reform legislation will create the urgency we desperately need at the federal level to push science toward real impact on people’s lives,” said Geraldine Dawson, PhD, Autism Speaks Chief Science Officer. “In the area of autism research, in particular, much needs to be done to translate important discoveries into treatments and therapies that can help individuals living with autism today.”

The Senate and House versions of the health care reform bills must now be reconciled and approved by both bodies before presented to President Obama for his signature.

Friday, December 25, 2009

Have Yourself a Little Taps Christmas



Santa hit it out of the park this year. Meet Disney's Little Taps. Sadly available only in Asia, we had to buy ours on Ebay from a seller in Hong Kong. Grandma got the fifth from someone in Oregon, but it was Asian in origin too. It's sort of the perfect autistic toy - ordered, repetitive, soothing. Jimmy's been watching these Little Taps videos on You Tube since the end of the summer and he loves them. He didn't put these things down for nine hours today. He's just delighted.

I am putting together an e-mail to the powers that be at Disney to see if there is any chance these things will be released here in the States. The mark up in the secondary market might kill me long term. But seeing Jimmy so happy, so engaged with Christmas... it was so worth it.

Tuesday, December 22, 2009

An e-mail I received regarding concert tickets... Concert Fans Beware!!!!

Concert Fans Beware!

There’s a train wreck about to happen and consumer groups say YOU will be the victim if the two most powerful corporate interests in the live concert business get their way. But you can help stop the merger of Ticketmaster and Live Nation. The government needs to hear from music fans now. Tell the Department of Justice that you’re against these monopolies amassing illegal power over consumers, before it’s too late. antitrust.complaints@usdoj.gov

As a concertgoer you have already felt the pain, and if Ticketmaster and Live Nation get their way, it’ll get worse. In the last 12 years, since Live Nation and its predecessor started its widespread takeover of the concert industry, concert ticket prices have shot up 82% while the consumer price index has gone up just 17%*. We are concerned that if the two concert industry behemoths, Live Nation and Ticketmaster, are permitted to merge, the variety and quality of artists coming to local venues will be affected, and your costs could rise further and faster.

Five of the nation’s most prominent public interest groups called on the Department of Justice to block the proposed merger of Ticketmaster and Live Nation:

Consumers deserve a fair deal in the entertainment marketplace, not the fewer choices and higher prices that would result from this merger,” said Susan Grant, Director of Consumer Protection at Consumer Federation of America

This merger is an insult to both musicians and consumers,” said James Love, Director of Knowledge Ecology International

“We cannot envision a remedy that would ease this chilling impediment to competition… In the absence of other effective, expeditious remedies, the proposed transaction should be prohibited.” American Antitrust Institute White Paper

As described by Senator Herb Kohl (WI) in the House Antitrust hearing, “This merger will not only expand Ticketmaster’s control of the ticketing market by eliminating a competitor, but it is also creating an entity that will control the entire chain of the concert business – from artist management to concert promotion and production to ticketing and ticket resale.

This merger would be a disaster for consumers. Nothing short of blocking this takeover of the ticket market by two industry behemoths will be acceptable,” said National Consumers League Executive Director Sally Greenberg

“As president, I will direct my administration to reinvigorate antitrust enforcement. I will step up review of merger activity and take effective action to stop or restructure those mergers that are likely to harm consumer welfare…,” said Senator Barack Obama when he was campaigning for the presidency.

If you agree with the consumer groups and lawmakers, make a difference and LET YOUR VOICE BE HEARD NOW.

Send a message to the Antitrust Division of the Department of Justice telling them you support President Obama’s campaign promise to protect the American public from abusive monopolies.

antitrust.complaints@usdoj.gov

To learn more, check out:

ticketdisaster.org


Sunday, December 20, 2009

Two Feet of Snow...

I guess timing is everything. I had surgery on Friday afternoon that ran long and was discharged from the hospital very late in the evening... into a snowstorm. I thought they said it wouldn't begin until after midnight. They have already called school for Monday morning, at least for me. Jimmy is completely screwed up sleepwise - just a bundle of energy from being inside all day with no running around. Jacob is crashed out after having "helped" his dad shovel snow. It was a fruitless task as it came down so quickly. I have been up and down between getting sedatives out of my systems while putting painkillers into my systems. Odd timing for a blizzard, but for me some good enforced down time to recover and to hang out with my kids.

Saturday, December 19, 2009

1 in 110...

A slight improvement from the initial 1 in 100 that I heard a few months ago, but the CDC is officially reporting 1 in 110 as the autism rate in children, with the rate in boys at 1 in 70. It is still stunning to me that we are arguing about insurance coverage and educational services in light of these statistics. Look around at the kids you know. Name one thing that is more prevalent these days than autism. I think the only the thing you can look and see is asthma and ADHD. As quoted in the linked article, ""Autism spectrum disorder" is an umbrella term for three types of neurological disorders that can lead to significant social, communication and behavioral challenges." Neurological. Yet parents are fighting state by state to get autism covered under health insurance policies and we are completely unclear what is going on nationally within health care reform regarding autism. (Just when I think I have a handle on that, it seems like something has changed yet again...) We fear coming educational budget cuts. I worry what tone outgoing governor Tim Kaine has set in slashing mental health funding on his way out of office. (And he is running the DNC for the next few years? I really hope they don't call here looking for money.)

1 in 110. When does it become a crisis? When each and every child is severely autistic? Or when that severely autistic child is yours?

I will admit, it wasn't on my radar until it happened to me. But autism changed the world view of our extended family as they have seen us struggle. With these number, if you don't know someone who is struggling with raising a child autism, with having the therapy they need uninsured, and their schooling inadequate for their disability, it will not be long before you do. And you won't have to look any further than family photos.

Tuesday, December 15, 2009

Insurance Companies Refuse Autism Coverage

An older article, but the quote is why I love Bob Marshall, for all his quirks....

LEESBURG, Va., June 21, 2009

Insurance Companies Refuse Autism Coverage

Total Cost For A Child Can Reach $5 Million, But Few States Mandate Coverage; Is Change On The Horizon?



(CBS)
An estimated one in every 150 children in America has autism and the number of reported cases is growing.

The total cost of caring for an autistic child can reach a staggering $5 million.

Parents are increasingly demanding that insurance companies cover the newest treatment.

CBS News correspondent Thalia Assuras
visited one such family in Virginia.

At 7 years old, Tristan Oldham is the big brother in this rambunctious trio. A couple of years younger is Gareth - bubbly and playful until he was two.

That's when "he slowly stopped playing. He would sit in a corner and chew on his shirt and play with the shadows," said mother Cassandra Oldham.

Gareth was diagnosed with autism. Nine months later, as Cassandra and Bill Oldham struggled to cope with Gareth's condition, they suffered another blow. Their third child, Korlan, is also autistic.

"I can't even describe it in words really. Just pain. Pain. Gut-wrenching more pain," Cassandra Oldham said.

The emotional anguish was multiplied by financial stress.

Intensive, one-on-one behavioral and speech therapy called "applied behavior analysis therapy" or ABA helps the boys. But it costs up to $7,000 a month per child for the recommended 40 hours per week. The Oldhams struggled to pay even half the amount.

"Which child do you choose? We don't have enough money to pay for therapy for both of them," Cassandra Oldham said.

The Oldhams have insurance, but not for autism therapy because Virginia isn't one of the seven states that mandate coverage. Businesses say adding autism to the list is too expensive.

"Prosthetics, mental health, stress, hypertension: all of these things lead to a cumulative effect that runs the risk of putting the insurance out of reach for the average business person and the average employee working for that person," said Hugh Keogh of the Virginia Chamber of Commerce.

Cassandra Oldham and state Delegate Bob Marshall don't buy it. They are pushing legislation that would force insurers to cover ABA, and say the costs of a policy would be minimal - somewhere between $2 and $4 a month.

"There are real children whose lives are going to be destroyed because we are acting indifferent to them. That's not a moral response," Marshall said.

But in tough economic times, states like Virginia are trying to figure out how to do the most good with fewer resources.

"I have a lot of fear when I think about the future and where my kids will be at," Cassandra Oldham said.

They've thought about moving to a state where their boys can get all the help they need.

Sunday, December 13, 2009

The Dolphin Feeding






So, one of the first things we did was the dolphin feeding at Sea World. We got in the line, bought the fish, and briefly waited. We came in, DH took the video camera to try to get footage of us feeding the dolphins and we set to it. Jacob is doing okay, but I have one hand on Jimmy. With his free hand, he is taking off his socks and shoes, wanting to go for a swim. I am thinking this isn't going well. Jacob is pushing up on the edge to get closer to the dolphins, so I can see him going in too. One of the trainers sees me struggling and asks if she can help, looking specifically at Jimmy, who wants to swim with the fishes. I introduce Jimmy. The next thing I know, she blows her whistles and calls over our own personal dolphin to feed, pet, and commune with. It was truly amazing. We were over the moon and I was moved by her generosity. It was the greatest gift to both my boys, but most especially Jimmy.

Sea World

Sea World was just huge for Jimmy. It wasn't just that we went through every exhibit. Jimmy would drag us through multiple times. He was so excited to feed the dolphins, he tried to take off his shoes to go in for a swim with them. He would wake up every morning and look out the window, across the parking lot, towards Sea World, begging to go. He loved every bit of it. So did Jacob.


The holiday photo with Shamu...

Jacob in conversation with Zap and his elf friend. This was hysterical. They were street performing elves in the waterfront area and I think Jacob spent 20 minutes with Zap, just talking to him. It was just kind of amazing. Jacob still talks about him, asking if he's coming for Christmas. Forget Santa, it's all Zap now. Whoever this guy was, he is amazing. If you stumble across this blog, thank you for making my kid feel so special!


Jacob in the tank in the new Manta exhibit, under the coaster. Kind of cool.

More Universal Island of Adventure Photos


The Fantastic Car...


Jimmy wanting no part of the Spiderman picture.

After much delay, the Thanksgiving photos...

Okay, I know they are considerably overdue, but here is the beginning of the Thanksgiving vacation photos. We sort of didn't do much of anything this summer in anticipation of this trip and it certainly was worth it. We went to Disney World in 2006 and realized how we really missed the boat with Jimmy when we wound up spending hours at Epcot's aquarium. So, this was the Sea World trip with a day at Universal's Island of Adventure for Jacob.
Meeting Spiderman...

Jimmy running around If I Ran the Zoo in the Dr. Seuss area in IOA... Couldn't get him on many of the rides like we did at Disney, but he loved the play areas at Universal.

Jacob with Betty Boop...

Jacob as a Jurassic snack...

Saturday, December 12, 2009

Every parent, as sad and frightening as this is, should read this article...

This is the future that I fear and the one that I work so hard to give Jimmy the tools to prevent.

"To whom it may concern:

"If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky's. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible.

"Trudy Steuernagel."

Sunday, December 06, 2009

Yes, we are back... and alive...




We took our vacation to Florida for Thanksgiving... and I brought back a cold. So I have again neglected my blog. I will try to compose a post about my trip tomorrow. I did want to post our best photo of our dolphin feeding experience. Actually, there is a better one with all four of us, but it is upstairs.

More tomorrow on the trip...

Wednesday, November 25, 2009

Teen with Asperger's Spends 11 Days Wandering NYC Subway

... and the police do nothing...

New York Police Commissioner Ray Kelly was asked about police actions in the case on Tuesday, during a news conference on other, unrelated subjects. He said police "waited for a few days, because obviously (the missing persons unit) would be overwhelmed if we took every report of a young teenager not home."

Kelly said proper protocol was followed.

"I believe that all appropriate action was taken to find this young man," Kelly told reporters.


I would think the NYC police would do more to find a child with a developmental disability on the autism spectrum. He wasn't just another "young teenager not home."

Saturday, November 21, 2009

FDA OKs Abilify for autism-linked irritability

After today, this sounds pretty good to me...

The U.S. Food and Drug Administration has approved top-selling Abilify as a treatment for autism-related irritability in children from the ages of 6 to 17, drug maker Bristol-Myers Squibb Co. said Friday.

Hey, Lamar Alexander

I would like to point out that Medicaid, the "medical ghetto," is the only thing providing any sort of real coverage for the long term care needs for families with children with children with autism. When they are adults and unable to work or obtain private coverage due to their preexisting condition, Medicaid is exactly what covers them.

Monday, November 16, 2009

I guess I really need to learn how to read legislation...

Hidden in all of that grant stuff, it was there... I just didn't see it...
U.S. House Passes Health Insurance Reform Bill Containing Provision for Autism Insurance Reform
Washington, DC (November 8, 2009) --

Autism Speaks, the nation's largest autism science and advocacy organization, today applauds the members of the U.S. House of Representatives for passing a health care reform bill that contains a provision for autism insurance reform in a vote held late last night.

The provision, introduced this past July by Congressman Mike Doyle (D-PA) and passed by the House Energy and Commerce Committee, will prohibit discrimination in benefits against people with autism by including behavioral health treatments as part of the essential benefits package. The bill must now be passed by the U.S. Senate.


I am still not sure what that all means... what is the essential benefits package? The one that every insure must provide, whether it be through your employer or the government? I am unclear. Maybe I will do some homework later. For now, its off to take care of a sick Jimmy and fold laundry.

Saturday, November 14, 2009

Another shocking statistic...

From Massachussetts:
A story just out from the Boston Herald state: Survey finds 90% of autistic kids bullied. The story starts out with:

A shocking new online survey has found that nearly 90 percent of autistic children in the Bay State have been targeted by bullying so violent and ruthless that a state lawmaker says teachers and school systems must be held accountable.

All kids are bullied to some extent, but I have no doubt that autistic kids get much more than their share of bullying.


90% of autistic children sampled in a single state are bullied in school. It's just pathetic.

Wednesday, November 11, 2009

Special needs Girl Scout troop rejects girl, 8, with autism

Ok, now I am hot. Not buying cookies at my job is politically untenable for me. Don't make me miss my Samoas over this crap. Let this child back in her troop. 'Cause I will say something about discrimination to every troop mom standing in front of the grocery store if I have to...

I am worked up...

Special needs Girl Scout troop rejects girl, 8, with autism
November 10, 12:23 PM
Seattle Special Needs Issues Examiner
Shelley Dillon

Was it a misunderstanding? Or some crazy mistake? Magi Klages' parents are wondering just that.

Their daughter with autism had been thriving for 2 years in a Girl Scout "Brownie program", an organization that pledges to "help people at all times" and to be "honest and fair, considerate and caring".

According to an ABC news report, when Magi's Brownie troop grew too large and her parents moved her to a smaller one for children with special needs, they never imagined their 8-year-old would be kicked out for being a "danger".
Magi's mother always accompanied her to the meetings and they thought the first one was going well for a child with autism in a brand new situation. Truthfully, Magi was having a tough time sitting down to do a project and needed to work through an episode of biting herself and running around at the meeting. She displayed many behaviors quite usual for children with autism but after the meeting the parents were called and told Magi could not come back.

The other children in the troop all have physical challenges and the troop leader alleged the other girls were afraid of her. Magi's parents are disturbed that their daughter was rejected because of her disability.

"We don't get it," said Michele Klages, who always accompanies Magi to the meetings. "She's 30 pounds and we were there. We were told she was scaring the other girls."
She said they had been up-front with the group leader about Magi, who is mostly nonverbal and relies on sign language to communicate. They were especially upset to learn the leader has a child with special needs.
It's terrible," said Michelle Tompkins, a spokeswoman for the Girl Scouts of the United States of America, who said she had received a "courtesy call" from the local council about the incident. "We are very inclusive and have a national policy against all forms of discrimination."

Anita Rodrigues, spokeswoman for the Girl Scouts of Wisconsin Southeast, did not return several phone calls from ABCNews.com. But Michele Klages says the council contacted her about the possibility of finding another troop for Magi to join.

Even the Autism Society of America admits that the Girl Scouts do "wonderful work" with children with disabilities and has often contributed volunteers to help children with this neurological disorder. It says that children with autism are rarely dangerous to others and that the incident illustrates the need for more support and training in organizations like the Girl Scouts.

Why did this happen? We will probably never know as the Girl Scout are evoking confidentially and will not share details.
Sadly, this whole incident could demonstrate a lack of autism awareness and basic information about the disorder. Surely in a special needs program, leaders would possess the level of understanding, background and compassion to be able to include children with all special needs or ask for some more help.

If the other girls were scared of Megin's behavior, that would have been the appropriate time to have a teaching moment; discuss autism and common behavioral issues associated with it. Model understanding, empathy and kindness; that is the what the Girl Scouts are all about.

"These children are so misunderstood," said Michele Klages. "We need to educate ourselves that these kids can be loving and fun. They should be given a chance like any other child."

Tuesday, November 10, 2009

Military Families Battle Against Autism

Why do military families deserve autism covered under their health insurance and the rest of us don't?

Military Families Battle Against Autism
By TISHA THOMPSON/myfoxdc

WASHINGTON, D.C. - At first glance, the Driscolls look like any other family at the park. But then, with very little warning, 11-year-old Paul starts to break down.

“Oh Daddy! Where are you?” he exclaims.

Paul is autistic. His father is a colonel is in the Marines flying injured soldiers out of combat. But it is Paul’s mom, Karen Driscoll, who is waging a new type of battle.

"As a senior Marine Corps spouse, I finally said, ‘You know what? I have a responsibility to my son, but I also have a responsibility to other Marine Corps families to speak out,’" Karen told FOX 5.

Curious to know how many other military families struggle with autism, Karen Driscoll filed a Freedom of Information Act request with the U.S. Department of Defense. The military sent her a list of statistics, which boiled down to an alarming number. At least one out of 88 military kids has autism.

“The numbers are pretty consistent with what we’ve seen in other countries,” says National Autism Center Director Susan Wilczynski. “In the United Kingdom, in Canada, where the numbers have been one in 100 or lower.”

Wilczynski says the military’s numbers represent a more realistic picture of what’s happening across the country. Recent studies released in October show as many as one out of 91 kids nationwide now has autism.

“For someone to go overseas feeling uncertain how well cared for their family is an unbelievable burden for the parent that’s leaving,” says Wilczynski. “But it’s also a huge burden for the family member who stays.”

Major Andy Hilmes says his son Drew was diagnosed with autism six months before his second deployment in Iraq. To help Drew learn basic skills like speaking and interacting with other children, Major Hilmes put Drew in a special clinic near Ft. Hood, Texas that offers intensive treatment called Applied Behavioral Analysis, better known as ABA therapy. The American Academy of Pediatrics recommends autistic kids get at least 25 hours a week of ABA therapy.

“Without those services, they’re not likely to develop the skills to reach their potential,” says Wilczynski.

But Drew’s mother, Nikki Hilmes, says that’s hard for military families because the military caps how much therapy it covers.

"The military now, with the funding that we get, we are able to provide between 10 and 14 hours," she says.

Military families get their medical benefits through a government-run program called TRICARE. TRICARE refused FOX 5’s request for an on-camera interview, but says its coverage is competitive with other commercial insurance providers.

Karen Driscoll says TRICARE isn’t telling the truth. She says she and her husband paid for their son’s treatment by emptying out their savings, mortgaging their house and finally borrowing money from their parents.

"My husband is a colonel in the Marine Corps,” Driscoll says. “If this is hard for us, if this is breaking our bank, I am very concerned for our younger Marines and our enlisted personnel."


But Driscoll and other military moms have discovered increasing coverage literally requires an act of Congress.

Congressman Joe Sestak (D-PA) is a retired Vice-Admiral with the Navy. This summer, he introduced a bill forcing TRICARE to provide more coverage. The price tag? About $50 million, which Sestak’s staff says is little more than the price of one Trident II missile.

“This is taking care of the troops,” says Sestak. "This is just one necessary step to say, ‘Look, we're going to take care of this with minimal cost. You, warrior, keep your mind on your mission because when you come home it’s as good as it possibly could be.’ That is what it’s about."

When Congress voted on the Defense Authorization Bill in October, Sestak’s bill passed the U.S. House of Representatives, but it died in the U.S. Senate. Meaning for at least another year, the Driscolls and thousands of other military families say they have to come up with another way to pay for therapy if their kids have any hope of winning the war here on the home front.

Sunday, November 08, 2009

Health care reform vote: why this is important

Health care reform vote: why this is important
November 7, 9:31 PM
Atlanta Special Needs Kids Examiner
Katie McKoy

As the debate and possible vote on the health care reform package approach, I cannot help but to speak up and say something as a parent of two children with special medical needs. Please think about this on a human level rather than political. Illness and disability do not care about political affiliation.

The health care system in the United States is broken run by health insurance companies who care only about profit and not about patients. Families of children with special needs in Georgia find themselves in an epic battle with insurance companies. Treatment for autism, cerebral palsy, speech delays, and any developmental issue is a war with the deck stacked against the child. While there are outside resources to help some families, the crux of the issue is that families who are paying for health care coverage are not getting what they paid for. Health insurance companies in Georgia employ tactics such as dropping patients, delaying payment, and denying claims for no valid reason as a method of driving up profits. The Georgia Department of Insurance provides little to no protection for patients. All the while, the cost of health care skyrockets and families go into a monstrous amount of debt as they try to care for their children. Our legislators meanwhile are cutting programs like special education and Medicaid making the hardship even worse.

It is obvious that the health care system needs an overhaul. However, the devil is in the details. Is a state run plan for everyone the best idea? No, because the government is not exactly the best thing when it comes to its current disability and low income plans like SCHIP, Medicaid, and SSI disability. However, everyone can agree that regulation of the health insurance industry needs to happen now. Health care coverage needs to be more affordable and required for everyone. Expanding Medicaid and Peachcare (SCHIP) eligibility to low income adults along with co-pays and premiums based on income is an idea that could work. High risk pools for patients who have pre-existing conditions needs to be implemented nationwide. Currently in Georgia, no such thing exists. Insurance companies need to be forced to cover therapies for developmental disabilities. They also must be held accountable for denials and dropping patients. Doctors, patients, pharmaceutical companies, health insurance companies, and politicians should all be included in the dialogue on how to fix this system before it breaks the nation.

After all the talk about death panels and other hype, people failed to see that insurance company executives are making decisions on who lives and who dies as we speak. We have bureaucrats who only care about profits deciding who lives and who dies. Sometimes they decide to deny a sick grandmother chemotherapy or an organ transplant. Other times, they decide to deny a sick infant a bone marrow transplant based on a loophole or technicality. Other times they decide to drop swine flu victims of coverage if they get too sick and max out a policy. Either way, people are getting sentenced to death every single day by health insurance companies.

Reforming health care and health insurance immediately is vital for the future success and recovery of the US economy. Cancer, disability, and illness do not care about political party affiliation. It is time for the politicians in Washington, DC to come together, set aside their differences, and work on a plan that is good for the entire nation. For special needs kids and all kids in Georgia and all over the nation, this reform needs to happen now.

Please put politics aside and realize that this is necessary for the future health of our children and nation.

HR 3962 Does Nothing to Address the Insurance Needs of Families of Autistic Children

The insurance industry wins again... why does it not surprise me that we got screwed in this...

A close examination of the text of the bill reveals that most of the provisions included relate to training, setting up grants for qualified institutions to train specialists and health care providers. However, there is also a focus on integrated family training and support of community and family-based care including financial provisions for the training of parents. If this bill passes, this could lead to programs being set up at the federal and state levels to provide funding to families seeking further assistance and specialized training in how to support dependents on the autism spectrum. Most of the funding however, is not earmarked to be set aside until fiscal year 2011.



Grants, programs... I need to write a post detailing my DD Waiver nightmare, where I am not officially on a waitlist until a plan of care has been written by my case manager. My case manager, the only one in Northern Virginia who was accepting new clients six months ago when this all began, never wrote it and now the state is threatening to drop Jimmy. This case management company won't return my multiple phone calls. So DMAS sends me a list where the only other name in Northern Virginia who is accepting new clients... well, she isn't. So they tell me to call everyone else on the list who is full to see if I can get someone else to write this plan of care. I got someone who said yes, but now she hasn't called me back. I think I may finally have it straightened out with a third case management company, but it is beyond insane.

More bullshit hoops for parents to jump through instead of real care for our kids. Ridiculous. I am furious. This is a complete let down. For parents of autistic kids, this isn't reform. It's the same old crap.

HR 3962

Ok, HR 3200 has autism language in it, but the bill voted on tonight was HR 3962. Is the same language there? At one point, I had a reader from Congressman Wolf's office. If she is still around, could you let me know. Thanks!

Saturday, November 07, 2009

I Am Autism

Ex-NBC CEO on Autism, Comcast

Ex-NBC CEO on Autism, Comcast

Bob Wright, founder of Autism Speaks, talks about health care reform and provisions made for autism in the house and senate bills.

Health Care Reform Bill and Autism...

A brief summary of language in HR3200 that address autism from the Autism Society of America:

These proposals include provisions that prohibit companies from excluding coverage based on pre-existing conditions, including autism; prohibit annual and lifetime spending caps; and require that companies cover habilitative and other lifespan care. Moreover, the amendment that Representative Mike Doyle added to the House Bill, HR 3200, requires that companies cover behavioral health treatments as part of the essential coverage package. The Doyle amendment, and his many other advocacy efforts, has kept the interests of people affected by autism in the debate.

Tuesday, November 03, 2009

Looking forward with a lot of fear...

So, of the big three offices in the state, not a one got a supporter of autism insurance mandates. I think this is going to be a scary ride for kids like my son. I hope not, but I think it will be. I am kind of glad Jackson Miller stayed in. In spite of my insecure, spun up criticism of his actions on HB1588, I do respect him cosponsoring the bill. He has told me so many time that he is a moderate Republican and maybe he is what is need there, now more than ever.

As I take the last steps to get on the DD waivers waitlist, get my school services yanked, and worry about how long I will keep the help I have, I feel like I ride a roller coaster of great report cards and even greater fears. It would be one thing if those fears were unfounded or figments of the imagination, but they aren't. Families of autistic kids worry and struggle and walk a tightrope every single day. Our situation isn't unique - it's standard. And it shouldn't be.

Parent/Teacher Conferences

Jimmy and Jacob both had great conferences. Jimmy got his first letter grade report card. Granted, he is on an functional academic curriculum, but he got all A's. I cried. IEPs can be so sterile, but A's. I understand an A. I have worked my tail off for many an A. I know this seems so dorky, but it is such a happy moment for me as a mom. Both of my boys are doing well.

Monday, November 02, 2009

People are asking me how to vote...

...which is just bananas!

I have to admit, I am a little more comfortable with the question do these jeans make me look fat than I am what to do in the voting booth. But because I just can't bring myself to shut up, I answer anyway. The state offices, at least the top two, are relative no brainers. Jody Wagner has reached out to the autism community, really the only candidate to do so. If you are leaning to split your ballot, there's your split. Creigh Deeds, I think there is hope for him in the mandates battle, so I would suggest that autism's interests (mandates, education, etc...) are better served with him. Ditto with Steve Shannon, though the AG has little to do with our interests.

Here's where it get tricky. My heart tells me that Jackson Miller voted against my bill, but my head believes his procedural argument. I am still miffed, but it is more within the personal context of having Jimmy's services screwed with at school and potentially with his waivers and just feeling under siege. It pushed my buttons. At the end of the day, Jackson Miller supported families with autism. He will likely do it again. (And hopefully he will do it a little more to my liking, like getting to the floor and passed.) Educationally, he has the support of the MEA and the VEA, two groups of which I am member as an educator. I may have gotten my panties in a twist, but I do respect the man. This race is always a little weird because I know his opponent too, Jeanette Rishell, and I like her a lot. With the autism thing being discussed this year, it was all very personal to me and Lord knows I don't handle that stuff very well at all. Even keel? Yeah, right...

Bob Marshall. My hero for fighting for families with autism. But I also spoke to his opponent John Bell. He says he will introduce the bill himself to mandate coverage himself if elected. And he'll get it passed. Military guy, very thoughtful and determined and has obviously studied up on autism. I liked him. I am glad I don't live in that district to have to make that choice. It would be an even harder personal choice than Jackson versus Jeanette.

Whoever you vote for, make it out to the polls tomorrow.

Sunday, November 01, 2009

What It's Like in Virginia?

A Pit Stop from Vacuuming and Playing Cars with Jimmy to Give an Enthusiastic Thumbs Up for Jody Wagner

Please vote for her on Tuesday. I think I have convince two Republican friends who like to split the ballot to actually cast a vote for her. This press release should garner some support from those on the fence politically but interested in autism and other disability issues.

A Happy Halloween

Jacob went as Wolverine. We found a shirt and a cap for Jimmy and he went as a trucker - he isn't much on costumes. We went to the Trunk or Treat at City Hall, which had a moon bounce. Jimmy moonbounced in the rain as Jacob and I went around and collected candy. I'd say we were up there for about 45 minutes, until Jimmy and dad went to man our door and Jacob and I went to canvass the neighbor. It was a good night.

Saturday, October 31, 2009

The State Attorney General Race and Autism

In my attempt to determine the stance of those running for attorney general on the insurance mandate issue, I contacted the campaigns of Ken Cuccinelli and Steve Shannon. Ken Cuccinelli's camp called and said he supported a rider. A discussion of riders in Utah highlights the severe limitations of this type of coverage:

First off, the rider does not help YOU...families who already have a child with a diagnosis. The rider would have to be purchased before a child is born. How many of you would have opted to pay extra for autism coverage before your child was born, just in case they happened to become diagnosed with autism? I can honestly say that I wouldn't have. Young parents are already faced with so many financial strains of having a new baby. The few that might buy into this plan would probably be those that already have autism in their family. So, we know that MANY children still wouldn't receive coverage for their treatment because their parents didn't buy into the rider. Second, the rider that has been proposed by the insurance companies only allows coverage for children from 2-6 years old. It only allows $25,000 a year for coverage, and there is a daily limit of $100. We know that these severe limits would not provide for quality treatment. There is no way that a full early intensive program could be attained with these limitations. Third, There are not riders for preemies, cancer or diabetes. Why is this medical problem not good enough for full health insurance coverage? Lastly, we in the autism community view the rider as a calculated distraction by the insurance lobby, and vote for the rider is a vote against families and children with autism.


This argument makes all the points I could every want to make on the issue of riders. There is no rider for HIV/AIDS, cancer, diabetes... why should there be for autism? Why should I pay premiums that offset the health care of those who smoke or share needles, yet have no access for my son when he has medical diagnosis through no fault of his or even my own? But, hey, its better than Bill Bolling.

Steve Shannon's staff had no idea of his stance on his insurance mandates. They probably don't need to know much, since that really isn't part of the AG's job. But they did tell me that Steve Shannon's brother had Down's Syndrome. He grew up in a home where he witnessed his parents advocacy for his brother and other kids like him on a daily basis and that, as staffers, they heard stories about his parents dedication often. So I guess I am going to do a little more research before Sunday. I think I am leaning Shannon.

Wednesday, October 28, 2009

All Politics is Local (Again...)

I hate election season. I really do. I internalize debates too completely. And when autism became a hot button topic in the local delegate race, I went off the deep end. It couldn't be helped. That autism bill meant the world to me and I hadn't completely understood on some level the difference between the committee vote and the end run vote that Bob Marshall attempted. I took it all very personally. No kidding... my child has autism. Moreover, our school services are in flux (another post for another time) and right after we got our EDCD waiver, our facilitator told us to start building case for keeping our new found services as the powers that be were looking at cutting the participation of children on this waiver. When you catch one break, three other things just crap the bed on you. It's almost a siege mentality and it has just been awful.

This election to me as the parent of an autistic child is about two things to me - an insurance mandate and education funding, in particular special education funding. Those strong in education are easy to identify as they are usually approved by the local education association. That would be the Democrats for the big three offices and the local delegate Jackson Miller. The insurance mandate is a little tricker. It is why I have not been enthusiastic with my support for Creigh Deeds. When I met him months ago during the primary run, he spouted the lobbyist line that markets will met the need. Health care reform, anyone? Yeah, right. Jody Wagner has been a strong supporter for mandates since the beginning, so she gets my vote. Bill Bolling has been vocal in his lack of support of insurance mandates, which is not pro-family or pro-life, so I couldn't vote for him in a million years.

After my Deeds encounter, I honestly wanted to vote for McDonnell, if he had any sort of positive stand on autism. I think he has probably changed his views on women (his daughters likely beat it out of him), which were too horrible to ever be put on paper, but I find it appalling that these conservatives are given the pro-family, pro-life stamp of approval just because they are against abortion. Being against abortion is a matter of political expediency. If they were for all life, they would ensure that all children brought in to this world, health or sick, developmentally typical or disabled, received proper medical treatment and care. Yes Virgina, that includes insurance mandates. I know many would consider this argument self serving, but what do people think the end game is? Do we want medical research into treating autism or detection inutereo so this children aren't born? Politicians serve so many masters that they can't be 100% intellectually truthful on anything. Then again, maybe I can't be either. I used to be a Democrat. Now I am single minded on one issue and honestly, as far as Richmond goes, no one party is better than the other.

My head is in such a wrong place. Politics, smolotics, I can't wait for Wednesday...

Saturday, October 24, 2009

I owe you a post...

And I will get to it... but I will give you a little stat. A 2007 Harvard study estimate the cost of an untreated person with autism as $3.2 million dollar.

Any politician who does not support insurance mandates is just crazy... or has no sense of the economics of autism.

Monday, October 19, 2009

Another letter to the editor on the autism bill debacle...

At least I am not the only one who cares... InsideNova.com had another letter regarding the killing of HB1588 and the role of our local delegate Jackson Miller. I get really worked up about it when this issue comes up, thus my overly harsh comments of the other day in the comments page. I appreciate his support of the bill initially, but I truly hope he has learned a valuable lesson. No, not that he should not sponsor the next autism bill that comes his way. I hope he now knows that his first responsibility isn't to his lobbyists or party leaders, but to his constituents. He is a nice man, he is a bright man, and I am fairly certain that he is going to get the message when all is said and done. Right now, I must say I love the editorial page editor who is running these letters!!! He is giving voice to something that is so important.

In a related matter...

Even with her earlier press release, I still don't know Jeanette Rishell's stance on the issue of autism. Can someone enlighten me?

Sunday, October 18, 2009

The Great Flu Vaccine Debate

Well, this week I get my flu shot. I am getting it at work, so I am fairly certain that I am getting the multidose with thimerosal. They have started the local shot clinics at the mall, but Jimmy will get the single dose at his doctor... without thimerosal. Jacob is what I am agonizing over now. I want him to get the vaccine, but I won't let him get his dose until I have mine and see if I have a reaction. Then I will decide where and when to get his. I can't believe I am agonizing over this as much as I am. I don't believe Jimmy's vaccine load caused autism in him. But I can't shake all the information/propaganda I am exposed to as part of this community. My niece in Texas has already had swine flu... she is recovering nicely and returning to school on Monday. But I still fear this particular virus. I am just starting to fear the vaccine too.

Saturday, October 17, 2009

Oops... always check what you wrote before you hit send...

So I was commenting on a letter in the newspaper and I hit send before I finished editing it... it was a little heavy handed on the candidate. So I would like to apologize (I tried to tone it down in a second post) to Jackson Miller for being a little heavy in my comments. I think he is a great guy, but I care so passionately about getting kids with autism covered under insurance for their therapeutic treatments. I stand by what I said, but I could have said so more nicely.

Thursday, October 15, 2009

Another one bites the dust...

Jimmy lost the second top front tooth today. And by lost, I mean lost. I got a phone call from Extended Care saying he was crying and fussing at his mouth, but wouldn't let anyone look. She asked if he had a loose one and I said yes. That must have been right about the time he lost it. No tooth recovered. Last time he tossed it into the lawn. So if he didn't swallow it, Mr. Bailey might just find it on the gym floor tomorrow.

All Jimmy wants for Christmas is his...

Wednesday, October 14, 2009

Tuesday, October 13, 2009

Join me in standing with Dawn

Hi,

For two years, CIGNA has denied Dawn Smith treatment for her brain tumor. She's had enough, so she's heading to Philadelphia to confront CIGNA's CEO in person.

Dawn wants to make sure that CIGNA can't ignore her when she gets there, so she's been collecting hundreds of pill bottles with messages of support along the way.

But MoveOn is taking it up a notch. They're collecting thousands of statements of support online, putting them in pill bottles, and delivering them to Philadelphia in time for Dawn's big arrival. I just sent one in and it's being printed now. Will you join me in standing with Dawn at the link below?

http://pol.moveon.org/dawnmessage/

Thanks!

A Press Release That Came to My Inbox...

New Study Highlights Consequences Of Miller’s Action

Autism study emphasizes the importance of treatments Jackson Miller voted against covering

MANASSAS, VA - A study released today in the journal Pediatrics shows that cases of autism have risen in the United States and about 1 percent of children ages 3 to 17 have autism or a related disorder. Given this increase in statistics, that means that based on 2007 census data for Virginia, thousands of children in Virginia suffer from the disease.

In the 2009 legislative session, Delegate Jackson Miller voted against a bill to support requiring insurance companies to cover treatments for autistic children. After telling the parents of autistic children that he would support the bill, he ended up voting to kill the bill.

“This most recent study highlights the real concerns of parents with young children today. As more and more parents face the tough reality of dealing with autism, Delegate Miller voted against coverage of some of the most basic treatments for their children,” said Jeanette Rishell, candidate for Delegate.

Studies indicate that strong early intervention that would have been funded by insurance in the autism bill helps about 90% of autistic children to improve dramatically and about half reach normal or near-normal functioning. Additionally, the cost increase to insurance companies would have been negligible, approximately $1.50 per policy per month.

“No matter what excuses he gives, Jackson Miller's voting record on the autism bill clearly shows that when it mattered, he voted against supporting the families of children with autism. By killing the autism bill in the 2009 session, Jackson Miller has forced families with autistic children to bear the costs of treatment during an economic recession. A family should never have to chose between feeding their child or providing their child with necessary medical care,"
said Rishell.

“Jackson Miller will tell you that it was a ‘procedural vote’ but the parents of autistic children will tell you it was a stab in the back,” said Ilana Kaplan-Shain, campaign manager for Jeanette Rishell.


Of course, they fail to mention that he co-sponsored the bill in question. I will continue to give him partial credit for that. But he did vote against Bob Marshall's attempt to bring the bill to floor, which was a vote against the bill, my son, and other kids like him. I can't say that I am sure how Jeanette would have handled it if she had been presented with the same choice by Democratic leadership. But Miller's action on the bill, no matter how much I like him or respect him (and he has gotten some great stuff done for law enforcement in Richmond especially), his actions on HB1588 hurt me.

There is a debate on Thursday. I was thinking about ducking out for it. I am hoping that someone would care to join me. Send me an e-mail if you would like to go.

Monday, October 12, 2009

A Great Post...

It is true that the rising numbers have almost been met with a shrug by the American media...

An estimated 1-in-60 13-year-old boys has an ASD, but I don't believe the same is true for 43-year-old men. It is time to stop pretending that the autism crisis is not happening.


Read more at: http://www.huffingtonpost.com/david-kirby/do-you-believe-that-one-i_b_310378.html

Nice to see people held accountable in Richmond...



If I could vote against Tom Rust, I would.

Tuesday, October 06, 2009

Spitting?

Jimmy's newest behavior... spitting. Solely at school. I have seen him drool and be fascinated by it, but the boy is seriously, defiantly spitting at school. I don't know how this started, but I am hoping it is a temporary behavior. It's not a pleasant or desirable one, especially in this age of concern about bodily fluid. If you think people flip out when you cough or sneeze now...

Monday, October 05, 2009

A Good Breakdown of the Today's Number in Time Magazine...

1 in 100.

(And another good article from Time about autism and fevers... it is a phenomenon that we have notice in Jimmy, that he is a little more verbal and connected when he has a fever.)

Sunday, October 04, 2009

The Origins of Autism (at least with my kid...)

A comment on my 1 in 100 post asked me what my theories on the cause of autism. As many of you know, I am not a big vaccine person, meaning that I don't think Jimmy's autism was principally caused by a vaccine injury. When we first saw Dr. Conlon years ago, he said that he thought autism was the perfect storm of speech delay, learning disability, mental illness, and an environmental factor, an X factor that hasn't been determined. His symptoms really began after his first ear infection at 9 months, following antibiotics. He was on antibiotics for repeated ear infections for nine months. Those were the months when everything became undone. There is some discussion of it as having a basis as an autoimmune issues and I think there is something to that and that unknown environmental factor is the trigger.

I have followed the vaccine schedule for both my boys. In hindsight, I might have thought about restructuring it. Never not giving him the needed vaccines, but maybe not all at once. Not because it was a cause, but because he is autistic and he reacts differently to medication. His behavior on antibiotics, for example, is more stimmy and he is more anxious and apt to tantrum. The thimerosol issue, for example, with the H1N1 vaccines. The single doses supposedly does not have the preservative. The multidoses does. I will seek out a single dose for my son as it just seems prudent. What doesn't seem prudent to me for my child is to not get the vaccine. As he doesn't have the same concept of personal space or understanding of hygiene, he is more at risk in someways for the flu and such. And knowing that he reacts as strongly as he does to antibiotics, I try to limit those as well. He still gets a couple of ear infections a year, even with his fifth set of tubes, but try to keep him as healthy as I can otherwise to limit the need for medication.

So those are my theories... As every parent does, I wish I had a cause so I could have more hope for a treatment. There is an extensive nuerodiversity movement online that resents the notion of a cure. I love Jimmy for who he is, but I hope with therapy and treatment, that he can live a more normal life. Right now, I don't see a future for him that includes things we take for granted - marriage, chlidren, a career, independence. That is what I want for him and why I fight.

Saturday, October 03, 2009

Back from the Fall Jubilee

Jacob and I spent an hour or so down at the Fall Jubilee, running into friends galore, including Jackson Miller. As frustrated as I was about the comments attributed to him, I got his side, which never gets completely addressed in the paper. I have better understanding of that "bad bill" comment (not that he made it.) I didn't get to quote the latest statistics being discussed, but I am confident in his commitment to families with autism. Now if I can get him to rebel against his Republican leadership a little when things like Marshall's parlimentarian manevuer come up again, he vote for his constituents instead of his leadership. A girl can dream right?

And I just missed Bob McDonnell. Damn it.

Friday, October 02, 2009

It is almost official - 1 in 100 Children has Autism...

From the Huffington Post:

A pair of federally funded studies on autism rates is about to make news -- big news -- and it isn't good: It would appear that somewhere around one percent of all US children currently have an autism spectrum disorder. The rate is even higher among six to 11 year olds and among boys, according to data from at least one of the new studies.

If you are an expectant parent, or planning to have a child soon, you might want to sit down before absorbing these staggering statistics, recently released by the National Survey of Children's Health (NSCH), which is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services.

According to data from the 2007 telephone survey of parents of nearly 82,000 US children, the odds of a parent being told that their child has an ASD are one in 63. If it is a boy, the chances climb to a science fiction-like level of one in 38, or 2.6% of all male children in America.

But there was also some surprisingly good news. Enormous numbers of children who were told that they had autism went on to shed the ASD label as they got older, parents reported.


Read more at: http://www.huffingtonpost.com/david-kirby/autism-rate-now-at-one-pe_b_256141.html


The article is very vaccine oriented in causality, but I think the immunological point is a good one. The environmental trigger, on the other hand, could be more or not limited to vaccines. But 1 in 100. Wow. How many more children will it take before the leaders in my state and country take it seriously enough to devoted adequate resources to research into causes and cure or to require complete medical care paid for under insurance?

I think there is good news in that children shed the label of autism, but even that needs to be looked into. I can't imagine that Jimmy will, but of course it would be what I want most in the world.

Thursday, October 01, 2009

Our ENT visit...

No infection, but a blocked tube. It's a relief, although the drops treatment course is a little longer in duration and not exactly any more enjoyable than the antibiotics. Jimmy is really cranky today and not transitioning well. A late arrival and early departure from school will do that (we had an afternoon appointment too.) He is starting to calm down, though he is still scripting his classmates and teachers name, in between going over electronic flash cards of animals, another delight he found on YouTube.

Wednesday, September 30, 2009

Off to the ENT...

Going to get Jimmy's tubes checked tomorrow. I think he actually has an ear infection, but I opted for this rather than the GP. We are overdue for a tubes check and there are fewer truly germy sick people at ENT than a family practice. It's not one moment too soon as he is feeling really puny.

I do need to get his rash on his backside looked at. I think it might be yeast related. Again, I am not sure the benefit of going right now outweighs the risk with the nasty flu season I am seeing around me. Other than some diaper rash treatment (what's going on is very similar), if anyone has some over-the-counter remedy recommendations, let me know.

Found on Facebook: Virginia Autism Survey

I have been looking for something like this all over the internet. It is important to note that both Delegate Miller and his opponent Jeanette Rishell are listed as in favor of autism insurance reform. I am unclear if Delegate Miller completed the survey and I still have concerns about the comments from their debate, but I am extremely pleased as seeing Jackson Miller and Jeanette Rishell both in support of offering coverage to my son and children like him. They have both met Jimmy numerous times and I would like to think that they think of him and the other children with autism they have met in this district.

Probably bigger from this is that while I was certain of voting for Jody Wagner all along, I have been undecided about the governor's race. If Bob McDonnell had said something in support of autism insurance reform, I would have voted for him. Instead, I hear this:

“Virginia has one of the highest numbers of insurance mandates in the country and these mandates adversely impact families’ and small business’ ability to purchase insurance.” McDonnell says he would seek other ways (than mandated insurance) to treat autism if elected, but doesn’t offer any specifics.

I honestly was starting to think that I wouldn't vote for him, but I am casting my vote for Creigh Deeds in hopes that he will take his new found support of autism insurance reform with him to Richmond.


Support Grows in House of Delegates; Deeds & McDonnell Differ

(RICHMOND, Sept. 17) -- Incumbents and challengers responding to a new survey agree that the issue of mandated insurance coverage of autism needs to be resolved in the upcoming General Assembly session. Last session, HB 1588 and SB 1260 both failed to reach floor votes necessary to advance. Heavy lobbying by autism families was countered by opposition by health insurance companies and the Virginia Chamber of Commerce. The VAP survey of all Delegates and challengers also shows that bipartisan support for insurance reform is growing. Democratic minority leader Ward Armstrong and Republican majority leader Morgan Griffith both support mandated insurance coverage for autism. They are joined by 36 other members of the House of Delegates who have indicated support of the mandate. Of 20 challenger replies, 17 support autism insurance, and three said they are undecided.

In the gubernatorial race, there is a stark difference between candidates. Democrat for governor Creigh Deeds says, “This is an urgent situation,” and he supports autism insurance. “Early treatment of autism will help countless families across the Commonwealth.” His running mate for Lt. Governor Jody Wagner also supports the legislation. Republican Bob McDonnell’s survey was incomplete. His reply does not offer a position on the autism insurance issue, providing this statement instead: “Virginia has one of the highest numbers of insurance mandates in the country and these mandates adversely impact families’ and small business’ ability to purchase insurance.” McDonnell says he would seek other ways (than mandated insurance) to treat autism if elected, but doesn’t offer any specifics. Running mate Bill Bolling’s survey indicates he clearly opposes mandated insurance coverage of autism.

In Virginia, 95% of insurance companies surveyed by the state, including market-share leader Anthem, categorically exclude coverage for the treatment of autism. In 2008, JLARC studied the issue and concluded that coverage of autism treatments is consistent with the role of health insurance in the marketplace. In 2009, JLARC reported that early diagnosis and treatment of autism in Virginia is lacking in many areas, and too expensive for families to pay out of pocket. More children will be diagnosed with autism this year than cancer, diabetes and AIDS combined. In a national movement led by Autism Speaks, 15 states have now mandated that insurance companies provide coverage for the treatment of autism, most recently New Jersey.
The same bill will come before the Virginia General Assembly again in 2010.

The VAP survey also polled Delegates and challengers on the need to train teachers and paraprofessionals in educating pupils with autism, which is a complex neurological disorder. The vast majority of aides as well as many special education teachers have no formal training in autism or behavior management. Over 50 survey respondents supported new training standards for teachers, including both McDonnell and Deeds. The VAP will push new legislation this year to require instructional staff to be trained or certified in autism by September 2011.

As a guide, the VAP provides a summary of incumbents and challengers who supported the insurance mandate last session as bill patrons, or indicated support in our recent survey.
Del. Ward Armstrong – Democratic majority leader.
Del. William Barlow
Del. Joseph E. Bouchard
Del. Danny C. Bowling
Del. David Bulova
Del. Charles Caputo
Del. Bill Carrico
Del. Roslyn Dance
Del. David Englin
Del. Morgan Griffith – House majority leader
Del. Timothy Hugo – Mandated Benefits Commission chairman
Del. Robert Hull
Del. Barry Knight
Del. Steven Landes
Del. Scott Lingamfelter
Del. Manoli Loupassi
Del. David Marsden
Del. Robert Marshall – Lead House Patron in 2009 session
Del. Bobby Mathieson
Del. Donald Merricks
Del. Jackson Miller
Del. Paula Miller
Del. Joseph Morrissey
Del. Paul Nichols
Del. David Nutter
Del. John O’Bannon – Only medical doctor in the House
Del. Glenn Oder
Del. Clarence Phillips
Del. Albert Pollard
Del. David Poisson – Lead Democrat patron in 2009 session
Del. Ken Plum
Del. Thomas Rust
Del. Lionell Spruill
Del. David Toscano
Del. Shannon Valentine – Sponsored 2-year autism study by JLARC
Del. Margaret Vanderhye
Del. Onzlee Ware
Del. Vivian Watts

Incumbents in opposition to the autism insurance mandate in their surveys:
Del. Sam Nixon, GOP caucus chairman, and Del. Mark Sickles.
Responding as undecided were Del. Jimmie Massie, Del. Lee Ware, Del. Jennifer L. McLellanand Del. Bob Purkey.

Challengers (17) in support of autism insurance reform:
Peggy Frank—7th
John Bell –13th
John Lesinski – 15th
Thomas Greason –32nd
James Hyland –35th
Gary Werkheiser – 42nd
Tim Nank – 43rd
Jeanette Rishell – 50th
Paul Nichols –51st
Christopher Merola—53rd
Gary Reinhardt—65th
Tom Shields—73rd
Jennifer Lee –80th
Peter W. Schmidt – 82nd
Jason E. Call –90th
Samuel L. Eure – 91st district
Gary West – 94th

Challengers (3) undecided on autism insurance reform:
Jim LeMunyon – 67th
Gwen Mason – 17th
John Amiral –87th

The survey asked for responses to 7 questions between the choices of Strongly Disagree, Disagree, No Opinion, Agree and Strongly Agree and were signed by the participants. This news release in no way serves as an endorsement of any candidate, nor is it intended to influence the election. Its purpose is purely informational for the benefit of Virginians interested in developmental disabilities. Funding for the survey was generously provided by the Autism Society of America – Central Virginia chapter in Richmond. The Virginia Autism Project is a 501(c)(3) non-partisan organization led by advocates from Roanoke to Virginia Beach, Richmond to Fairfax. We are on Facebook, and encourage friends to join us there as fans of the movement. Visit www.vapnova.org. For more information on the national scene, go to www.autismvotes.org.

Tuesday, September 29, 2009

An owed post... Cox Farm

Cox Farm's Fall Festival was a good time. We took Jimmy's respite provider with us and it was just such a great day. She was really able to accommodate Jimmy's desires and aversions. We did some things together well, like the slides, and others poorly (like the second trip on the hayride), but everyone was able to enjoy themselves. I don't take the help for granted. It was huge to have her assistance. We avoided going a year ago because it was getting unmanageable with Jimmy. We have been given something great in the help we are receiving. We are very fortunate.

I'd have more to say, but I think I am coming down with the nasty bug that is going around work. I want sleep. Badly.

Sunday, September 27, 2009

Cox Farm Photos... story to follow




A Reality I Understand...

Today's Washington Post has an article about the health-care debate from the various perspectives of people living on a suburban street. It includes a family with an autistic son, who's story is very similar to everyone else who walks this path.

Time's Up

Just across the courtyard, at 114, Will and Sarah Armstrong and their three children are about to join the ranks of the uninsured. Will, who worked in church leadership, was laid off. In October, barring a last-minute job find, they will have no coverage.

"Our family is now going to be one of those who need public health care, which I never thought we would," Sarah said. "It's scary."

It's not like what they had was perfect, but it was something. After the birth of each child, Sarah found herself arguing, for months, with insurance companies over hundreds of dollars in doctor bills that they said she owed. After hours on hold to haggle with agents and filed and refiled forms, she was always proven right. she says.

When their oldest child, Zachary, had difficulty learning to speak and began to fall apart at the sound of a hair dryer or vacuum cleaner, they persevered through long waiting lists and paid out of pocket to take him to specialists, who diagnosed high-functioning autism. The boy needed speech and occupational therapy, psychiatric care, and a variety of medications, supplements and classes. The couple found themselves burning through their savings to pay for the care that their health plan would not cover.

Zach had such a bad experience in school that Sarah began home-schooling him. Now, going back to work is no longer an option for her. With their savings depleted, the couple, both 36, are considering selling their house and moving in with Will's parents in Virginia.

"What she's doing with Zach is really working for him," said Will. "We're committed to continuing it, even from a cardboard box."

Sarah finds herself watching the health-care debate with more intensity, more impatience now that it hits so close to home. She wants lawmakers to do something, whether or not it helps her family right away. Watching Obama address a joint session of Congress this month was not encouraging. "All the Democrats stood up and cheered at every line, while all the Republicans sat with their arms crossed," she said. "And all I could think of is, have we come to this?"

Friday, September 25, 2009

Not at all sure of what I think of "I Am Autism"



There is a whole lot of truth to it, but it's heavy on its point.

Autism amendment to America Healthy Future's Act

Some good news on the insurance front from Autismvotes.org:

"As you know, Senator Robert Menendez (D-NJ) introduced an amendment to the America Healthy Future's Act earlier this week and the measure was heard before the Senate Finance Committee last night. It passed with an overwhelming majority, receiving additional support by Committee Chairman Max Baucus (D-MT). After the amendment passed, Senator Menendez made extensive comments on what this amendment will mean to families of children with autism across the nation making the intent of the amendment clear and preserved in the Congressional record."

Thank you Senators Baucus and Menendez!!!!

Thursday, September 24, 2009

Wednesday, September 23, 2009

John Travolta Acknowledges Late Son's Autism

John Travolta acknowledged his son's autism in his testimony in a Jamaican extortion trial today. I have been really critical of Scientology in the past, especially Tom Cruise's comments on medication and the collective ignorance of developmental disorders. I have been critical of Travolta for not acknowledging what was rumbled about in autism circles for years.

Not that it matters for anything, but I feel badly about my insensitivity. He may be a celebrity, but he was a person first, making the best decisions he could for his child. It's what we all do. I just found it completely frustrating the thought that the existence of this disorder, this disability was even in doubt among Scientologists. Day in, day out, it is very real to those of us raising kids. The neurologists, developmental pediatrician, therapist, medications - it doesn't stop. It is life, 24/7.

I think Mr. Travolta's acknowledgment of his son's diagnosis will likely raise the profile of autism yet again. I hope he will lend his name and energy to helping Jimmy and other children and adults with autism. But most of all, I wish him and his family peace and healing, because losing a child is a pain no one should have to endure.

Saturday, September 19, 2009

A Moveon.org mailing that hits home...

The thing that resonates with me is that the situation is very similar to the one that my brother-in-law has found himself in. The tumor, the treatable nature of it (only if his in-network doctor knew what to do), and the suffering of the whole family. It's crazy. When this got forwarded to me, all you have to do is change the name of the patient and the insurance company - the experience is the same.


Dear MoveOn member,
Meet Dawn. She lives in Atlanta.

Four years ago, Dawn was diagnosed with a rare, but treatable brain tumor. Dawn's doctors are ready to help her. But CIGNA, Dawn's insurer, refuses to pay for her care because the only hospitals qualified to treat her are out-of-network.

Dawn has been fighting CIGNA on her own for years, but now she's asking for help. What's happening to Dawn could happen to any one of us. And if we all stand with Dawn to shine a light on Big Insurance's abusive practices, we can get Dawn the care she needs and make sure they don't do this to anyone ever again.

I just signed a statement supporting Dawn. CIGNA may be able to ignore Dawn, but they won't be able to ignore millions of us standing together. Will you join me? Clicking below will add your name:

http://pol.moveon.org/dawnsmith/o.pl?id=17251-10405685-wBIgNfx&t=3

The statement says, "I stand with Dawn Smith. CIGNA must provide the treatment she needs and stop rejecting legitimate care for all the others who are suffering."

Unfortunately, Dawn's story isn't unique—she's one of the millions of Americans who are suffering—but what she's doing about her situation is. Instead of suffering in silence, she's sharing her painful, powerful story so that, as she says, "no one else has to go through what I have."

Since she got sick, Dawn's life has been a struggle. She has terrible pain and sudden seizures that can knock her off her feet. She's had to move back in with her mom so she can have constant care. But through all that, she's kept her spirits up.

The worst part is that her condition is treatable. But CIGNA's refusal to treat her has brought her to "the end of my rope," as she puts it. CIGNA gladly accepts Dawn's premium payments, but when she needed care, they refused to pay for it, coming up with new reasons as they went.

Dawn's story is a symptom of a much bigger problem. But if we all rally behind her, we can help not just her, but everyone else who's suffering under our broken system, too. Together, we have the power to make Dawn's story different, and in the process, to remind Congress and the American people why we so desperately need health care reform.

I'm standing with Dawn. Will you join me? Clicking below will add your name:

http://pol.moveon.org/dawnsmith/o.pl?id=17251-10405685-wBIgNfx&t=4

Thanks for all you do.

No, I am not dead...

I have had a big week, figuring out my place in the new world order. Adapting to the help in the home. My house gets progressively clean (in small increments, but it is happening) with each day. It's sort of amazing. But because of the hours that she is working, she is here closer to bedtime. It has allowed for a more focused situation, where she gets him to bed in his own bed. He has never slept in his room before. We have had an air mattress in the floor, which is where he was moved to each night after he fell asleep in our bed (only to come back at 3 or 4 am.) He is starting and ending in his own bed, in his own room. I want it to be habit. It's how it should be. Our attendant has been critical in getting it started, because bedtime for him is bedtime for Jacob as well. Jacob is horrible at bedtime. I had thrown my hands up about getting people to sleep when and where they needed to. But I sort of feel like I am abdicating Jimmy in this way as a mom. But I can't do both. As you can see, I am conflicted. Ultimately, its getting done and that's a good thing. We've got Nanny 911 going on at our house with a quiet 18 year old leading the charge. But it's working. And a favorite former sitter is moving back to town, she we will likely bring her in the fold as well.

Jimmy has an appointment coming up at Kruge Rehabilitation Children's Center in Charlottesville for an independent educational and medical evaluation. We will get professional recommendations for both and be back under the care of a developmental pediatrician rather than a neurologist. It's a more nuanced approached and I am grateful for it. I am hoping to get recommendations and input about what is truly best and most appropriate for Jimmy at this stage of his life. As always, there is a wait for the appointment, but it isn't too long. I have people wanting to strip services he needs badly, I have people who want to add services, and no one looking at Jimmy in a holistic way. I would think that the powers that be could do as part of this educational process, but they are not. Instead, I get to arrange and pay for it. The joys of autism.

He is having a good year starting at school. The new teacher is doing a great job with feedback on what kind of day he is having, what he is doing. The class is well staffed in quality and quantity of people at this point. I am pleased with the classroom part of it. Jacob is having a great time in Kindergarten as well. I got a note saying that he will have show and tell every Wednesday. I just think it's the cutest thing. I wonder if it would be inappropriate to ask that it be videoed and e-mailed to me. He is so expressive, I would love to see him describing his favorite things. Nothing but good notes on behavior at school. Not as good at Extended Care, but he will get there. Just as soon as he stops putting his friends in headlocks.

Saturday, September 12, 2009

A Scary Statistic Leads an Interesting Article...

More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. One in everyone 150 children in the United States are diagnosed with autism according to AutismSpeaks.org. The disorder affects 1.5 million people in the United States.

Instead of letting the lifelong disease effect him negatively, Christopher Fitzmaurice is using his autism to help reach UNC Charlotte and the surrounding communities. Diagnosed at just three-years old, his case of autism was identified as mild to moderate. Now 20 years later, at the age of 23, he views this as a perfect time in his life to speak about autism.

Sunday, September 06, 2009

Schools cope with challenge of educating autistic students

A good article about education, with the focus on a mom with three autistic boys in Colorado. It makes a couple of good points regarding the financial cost to school districts, but also the virtues of intervention:

"Districts that have the reputation of being the best at educating special needs children downplay their successes, afraid they’ll be inundated with applications and encounter even more budget problems. And Lehman says districts also don’t emphasize how much they spend on special needs children because some families of children without disabilities get upset that less money goes for programs for their children.

But for Teresa and Patrick Wright, the money spent to educate autistic and other special-needs children is money well spent. She predicts that Joshua will be able to live independently and attend college because of the instruction he’s received, and each time district experts meet with her to discuss the boys’ Individual Education Programs, she is heartened."

Saturday, September 05, 2009

Please consider this...

Our friend Lara just donated bone marrow to her brother who suffers from Leukemia. She is of Armenian descent and she is walking in October to raise money to improve matching technology for her community. Please consider supporting her efforts - she is just a great girl.

"This October, I am participating in the Walk of Life to honor my brother and to help the Armenian Bone Marrow Donor Registry's efforts to save other others' lives. People aren't as lucky as my brother because they are still looking for donors to be matched with. The donations from this event helps those people find matches through better technology and funding for marrow registry drives. Please help me achieve my fundraising goals with your contribution. Just click "Sponsor Me" to make a secure online donation. Thank you!"