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 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

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.