But At Least It Would Be a Graceful Death

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Sweet Pea tends to worry about the future. She'll come up with all sorts of things to worry about. Usually these are easily countered, and she is (temporarily) reassured. It's gotten that many of the same things come up over and over again, so I've developed almost automatic responses:

"What if I don't like the job I get when I grow up?"
"Then you'll get another. I had a lot of different jobs before the one I have now".

"What if a bad person breaks in our house and kidnaps me?"
"The doors and windows are all locked. And the police drive around all the time looking for bad people".

"What if you die?"
"I'm not planning on dieing for a long time".

"What if there's a tornado and it knocks the house down?"
"This house has been here for over 100 years, and nothing has knocked it down yet. Mommy and I and this house will protect you".

But the other night she threw me off for a second. She came up with:

"But what if I get sick?"
"What do you mean, Sweet Pea?"

"What if I get sick and die from the Swan Flu?"

One part of me cringed a little inside. I shared this irrational fear, that this flu season would be one for the record books. That there would not be enough vaccine in time. One of her classmates already had a case. A grandchild of a co-worker is currently ill with it. One of our doctors got it last fall from a patient. What if I caught if from a patient and infected one or both of our kids? Of course I know that even if they get it, that they probably won't die. They'll probably be enough anti-viral medicines around to treat them. Probably.

Of course another part of me wanted to laugh out loud at the "swan" thing. Buddy Boy immediately chimed in,

"It's the SWINE flu. SWINE flu! You know, pigs!"

I then hugged her, and told her we'd just have to get her some medicine for that, if she got sick.

We actively try not to have the news on the TV, as there's seldom anything good on, and you'd think that every other child in the county had been kidnapped for all the coverage kidnappings get. But somehow the world creeps in, no matter what we do. And the media magnify our little fears, irrational though they be.

Dogged Perseverence

Some people may remember the story of the 5 year old Columbia, Il boy who had a service dog prescribed for him by his doctor, and had to fight a court battle in order to have the right to take the dog to his school. The Kalbfleisch family won a court order to have the dog allowed to accompany their son to school, after spending about $50,000 on attorney's fees fighting the school district, and another $10,000 for training the dog, which was trained by Wilderwood Service Dogs of Tennessee.

The school district, which originally was willing to let Carter Kalbfleisch attend his home school, suddenly decided that the dog was not welcome. So the school quickly called an IEP meeting, passed an IEP without the dog being necessary mentioned in it, and insisted that placement be in a special autism specific school, rather than Carter's home school. The Carter's are going along with this placement for now, in order to get their son into school. But they are continuing to fight to get him placed back in their home school.

"I think it’s important for him to be in his own community with his local peers for him to look up to," said Kalbfleisch. "It’s very important for autistic kids for their communication skills and, later on in life, to get them interacting with people and into the real world."

It never ceases to amaze me the lengths (and expense!) that a school district will go to in order to fight a parent. When someone in the school district decides that they don't want someone in their school, they seem to have no qualms about spending obscene amounts of the taxpayer's money to fight individuals. In this case, the Kalbfleisch's have spent $50,000 so far. Further appeals will certainly take at least $10-$20K more. If the family has spent that much, the school district has spent at least the same (and probably more, as they often put multiple lawyers against the single one that the family provides). The special school that they are sending Carter to costs about $24K more than his usual school/year. So figuring conservatively, the school district has been willing to spend $85,000-$95,000 this year alone just to keep one service dog out of a classroom, with an additional $24,000 every year to keep him out.

It looks like a friend is going to be facing a similar fight against a school district, which has decided that it'll keep making the environment worse in order to force a child out of the family's preferred placement (their home school), in order to place him where he can be warehoused. Please drop by Kristina's temporary digs and lend a little moral support.

I've never met anyone quite so doggedly persistent as Kristina, and I know that she'll give this district a run for their money.

All You Need Is...

The above message was slipped under the bathroom door this morning by my daughter, Sweet Pea, while I was shaving. She usually isn't up that early, so it was a bit of a surprise. When I had finished I opened the door, and she gave me a great big hug and told me I was the best daddy in the whole wide world.

Not a bad way to start your day.

I once read a definition of a daughter as "The one woman in your life who will love you totally and not try to change you." I can kind of understand that.

Of course, this is the same daughter who over the weekend, after being called out for taunting her brother, was crying and yelling at us at the top of her lungs "I hate you. You don't love me. You always yell at me. I'm going to leave and find new parents who will love me." (Note-she defines "yelling at her" as any comment that uses even a slightly disapproving tone of voice)

I think I'm going to have to "store" the memory of days like this, to get me through her puberty.

Liverpool-More than the Beatles

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As most fans of the "Fab Four" know, today a digitally remastered collection of Beatles songs was released.

As most are surely aware, the group got their start playing in pubs in Liverpool. But what I really want to talk about today is something else that Liverpool may become famous for-The Liverpool Care Pathway. I bring this up to illustrate what I believe is one of the major ways that government directed/socialized medicine is potentially life threatening to those with disabilities.

Basically, the Liverpool Care Pathway (LCP) is a standardized method of dealing with people that are expected to die soon in the UK. It is a standardized treatment method that has been vetted by a panel of "experts" to improve how one dies in the UK. On its surface, there is much to recommend it. Rather than be hooked up to machines one doesn't want and subjected to procedures that have little probability of success, it is much preferable to die in relative peace. I have often advocated for patients to have the right to say what they want, and have had many "difficult conversations" with patients regarding what kinds of interventions they wanted if they became unable to communicate. But it appears that the LCP goes way beyond advocating for and implementing patients' wishes. Combined with the Mental Capacity Act of 2005, which gives doctors the ultimate decision making authority when they judge patients unable to make their own decisions, the LCP allows patients to have fluids withheld and deep sedation given IV until they die. Once doctors decide that you fulfill entry into the LCP, one's death becomes a self-fulfilling prophecy, as the deep sedation masks any indication that you are improving.

The LCP was initially used for people with terminal cancer, but its use has expanded to patients with other conditions, such as after a stroke. As this presentation shows, all you need to be entered into the pathway is to be hospitalized for 48 hours, and two of the following conditions present:

"- bed bound
- semi-comatose
- only able to take sips of fluids
- no longer able to take tablets"

It doesn't take a rocket scientist to see that many people with disabilities might enter the hospital with at least one strike against them. And combined with the general attitudes towards the elderly and disabled in healthcare settings, it isn't hard to see how some people feel that they need to rescue their loved ones from the LCP. As noted in some of the articles I linked, it doesn't matter if your friends and family disagree. Family members have been threatened with arrest for feeding their family member once they were put on the LCP fast track to death pathway.

But why bring this up now? Why don't I, living across the pond, just MYOB (mind my own business)? Because of course tonight is the night that President Obama makes his pitch to push the current health care bill that is before Congress. While I freely admit that there are many things that need to be fixed (including access and cost issues), I heartily disagree with the Utilitarian approach that government provided healthcare provides. If there is going to be rationing (and basically all forms of healthcare provision involve some rationing at some point), I want to have the decision making capacity of what is provided, not have it be the decision of some anonymous government committee.

As others have noted, the healthcare bill under consideration creates 52 new government organizations, including an independent advisory council on what are best medical practices. Dr. Ezekiel Emanuel (Presidential adviser and brother to Whitehouse Chief of Staff Rahm Emanuel) has written:

"Substantively, it suggests services that promote the continuation of the polity—those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations—are to be socially guaranteed as basic. Covering services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic, and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia."

Emanuel sees a world where "the community" comes first, and individuals are only judged worthy of expenditure if they have value to the community (with not even a nod to the intrinsic value of all human life).

So as you listen to the speech tonight, know what the President's adviser on healthcare is telling him, and what this bill before Congress will result in. Don't think that you'll get healthcare reform passed now, and worry about the details later. If you happen to get sick, there just might not be any later for you.

What an Autism Organization Should Be?

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.

A Quick Resolution

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After a letter was sent by ASAN (as well as many of you, I'm sure), the York, PA chapter of ASA sent the following reply, in which they detail how they are going to immediately remove the billboards.

We all make mistakes, and it's often difficult to admit when we've made them. I applaud the York, PA chapter of ASA for its quick and reasonable response. I believe them when they say they meant no harm, and salute them for being open to considering other voices from the "family."

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Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,

Amy Wallace

President ASA York

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And here is ASAN's announcement regarding this:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community's reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York's President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

The Letter I've Written

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I know that in one sense, the York, PA ASA billboards that I wrote about in my last post pale in comparison to the ad campaign wrought by the NYU CSC in 2007. But that still doesn't mean that I can't attempt to change what I consider to be an insult to my son, as well as other autistic people.

So here is the text of the letter that I sent today:

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Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.


Sincerely,

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As ABFH was kind enough to point out, the address of the York, PA ASA chapter is:

pa-york@autismsocietyofamerica.org

And the contact person is Amy Wallace.