Lest we forget

Recently in my home school district members of the board have been rallying to "study special education" to make sure it is "cost effective." Members of the community, alarmed by the violent cuts proposed to the education budget by our so called governor have been calling for cuts to special education.

How predictable that under stress communities would go after the weak and disabled as scapegoats. This same community that twice has refused to tax itself to pay for the education our own children. Are our citizens taking their torches and pitchforks out to the homes of the baby boomers who have benefitted from prop 13 all these years? Many of them paying less in property taxes all year than many of our young families pay in mortgage each month? Are they going after the governor, who proposed the cuts, or our Republican legislators who have taken a blood oath to not raise any new revenue, no matter what? Do they think that, maybe, under the circumstances that athletes could pay for extra curricular activities so that children with disabilities could have nurses, aides to change their diapers or speech therapy?

No, they go after children with disabilities. "Get the gimps! They cost to damn much!"

Americans after WWII love to vilify the Nazis. What has always scared me about Nazi Germany is not how alien it is, but how human they were, how recognizable. In that great Christian democracy (yes, Hitler appealed to Christians, especially Protestants, AND he was elected. Look it up) in that great democracy, when times got hard and Germans were standing in bread lines, it was the disabled they went after first. The tens of thousands of people with disabilities who were murdered were just the rehearsal for the Jewish Holocaust. They are not even remembered. And, it began here, in the States, in California. What scares me about Nazi Germany is how human they were, and how human we all still are. 

The following is from the National Holocaust Museum site:

Popular films such as Das Erbe ("Inheritance") helped build public support for government policies by stigmatizing the mentally ill and the handicapped and highlighting the costs of care. School mathematics books posed such questions as: "The construction of a lunatic asylum costs 6 million marks. How many houses at 15,000 marks each could have been built for that amount?" (emphasis added).

Nazi Germany was not the first or only country to sterilize people considered "abnormal." Before Hitler, the United States led the world in forced sterilizations. Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill. Nearly half the operations were carried out in California. 

A last thought from EUGENE V. DEBS

"Now my friends, I am opposed to the system of society in which we live today, not because I lack the natural equipment to do for myself but because I am not satisfied to make myself comfortable knowing that there are thousands of my fellow men who suffer for the barest necessities of life. We were taught under the old ethic that man's business on this earth was to look out for himself. That was the ethic of the jungle; the ethic of the wild beast. Take care of yourself, no matter what may become of your fellow man. Thousands of years ago the question was asked; ''Am I my brother's keeper?'' That question has never yet been answered in a way that is satisfactory to civilized society.

Yes, I am my brother's keeper. I am under a moral obligation to him that is inspired, not by any maudlin sentimentality but by the higher duty I owe myself. What would you think me if I were capable of seating myself at a table and gorging myself with food and saw about me the children of my fellow beings starving to death."

"The generosity of the voters"

Yesterday I went to Sacramento to speak to the legislative budget committee on what the committee chair sarcastically called "the governor's revised revision of the May revise" of the budget. 

The room was packed, standing room only, and the line went out the hall. During the public comment period, which lasted well over an hour, I joined citizen after citizen in appeals to our legislators. Each of us begging them not to cut education in our state further, describing the crippling blows our local schools and services have taken. No one spoke in favor of smaller government, less taxes or more cuts to education or health and human services. Yet the majority sat powerless to act, because of the tyranny of a few ideologues who have sworn a blood oath with their party to raise no new revenue, no matter what. 

In California, it takes a two thirds vote to levy any new tax. In spite of a 59% vote in favor of new taxes in our district, we cannot raise money to stem the hemorage created by the violent slashing of the state budget. People are literally jobless, homeless and hungry,  yet they sit smug and satisfied to do more harm.

One Republican member asked about the fraud, waste and abuse in In Home Supportive Services for the disabled that were, in his words "taking advantage of the generosity of the taxpayers." To him, I say this:

•  These services are so hard to get, I can't imagine fraud waste and abuse in the system. If there is, you risk killing the patient trying to excise the last of the cancer. Seriously, how much more can you spend trying to prevent unnecessary expenditures? 
  
• Second, charity and generosity are neither if they are given with resentment and used to shame the recipient. Generosity and charity exalt the giver and the receiver. That which you do unto the least of these...
  
• Third, and most importantly, programs for the disabled are not built by generosity, they are built by wisdom. You are likely to need these one day. 

As one great legislator once said, you will never be black, you will never be a woman, but you may easily become disabled on your way home. 

Many people have told me that my daughter was born so that I could learn-- if there is a force out there that guides the life experiences we have in order that we may learn compassion, humility, and generosity first hand, may that force bring those lessons to the Republican party of California. And may no one else need suffer while they are learning. 

Refusing Medical Treatment

There was a great show on Talk of the Nation today on the right to refuse medical treatment based on the family that fled under a court order to provide chemo for their child with cancer. 

I have had both friends and family refuse medical treatments for various reasons, and others who have used every available option. Going through this with loved ones so many times, I have come to understand how nuanced and intensely personal these decisions are, and to respect the place that people come to for their own reasons. 

Parenting a child with complex needs makes these decisions so much more complicated to me than these other decisions. There all the disability rights issues, the moral and ethical issues, the quality of life issues there are also questions of her informed consent. The most important thing to me for any one facing these decisions is what matters to them. Yet how much can I rely on that with my child? Not so much, I think. Does that necessarily mean we do everything we can always, or would I do what I think I would want, or what? 

Right now, I do everything, always. It feels right; she loves life, we love her, that is enough. 

But there are the complex legal issues of refusing treatment for a child-- as a parent, we mostly can't refuse treatment. I could be in a bad situation if I refuse to go to the ER for another seizure and things go wrong. Or if I decide to try to take her off just one of her four seizure meds to bring her back to the world of the alert, without her doctor's consent? What is the role of the medical establishment and what is my role in parenting my child? I am not sure how I feel about that right now. But I appreciated the conversation today on NPR. 

Access, It's an attitude!

We took the family out to see Night at the Museum 2 at our favorite local theatre. Why is it our favorite? Accessibility of course. It has wheelchair seating in the first row and unlike a competing franchise, lots of chairs for companions or families. We can all sit together! And they have nice ramps at all the regular entrances. In fact, no stairs. A great separate restroom so we don't even have to jockey past all the regular stalls to get to the "big one" at the end. Even the snack area has low counters and is wide and easy to navigate. 

More importantly, the staff there are always a pleasure. They are helpful without being obtrusive or indulgent. They always greet all three of my children without singling any of them out. Most refreshing to me, this theatre employs a number of people with disabilities, so my children feel at home-- this place reflects our lived experience.  And my daughter who has a disability interacts with folks who are doing work that demands a great deal of interaction with the public. I believe this is part of the reason the whole staff there is so much more skilled than the public at large at interacting with our family. They have peers and colleagues with disabilities and varying abilities; interacting with us is a normal part of their lives.

Access is so much more than a ramp, it is an attitude of normalcy, an experience of being welcomed and fitting in. I am so glad to have places like this, and as my children experience more inclusion at school, I look forward to a future where most places are like this. Thank you again to the many generations before us who worked on ADA and IDEA. 

Test Scores on Transcripts

Principals in my home district are lobbying the school board to adopt a new policy to place California Standardized Test Scores on students transcripts. The board discussed this last night. I was disappointed that they did not seem to find much wrong with the argument. I am opposed to placing scores on transcripts for many reasons, as a parent but more importantly as an educator and researcher of many years. Here are my main points:

1. Adding a penalty and reward to a test that was NOT graded changes the testing conditions. The purpose of standardized tests is to standardize testing conditions. This is changing the very reliability of the instrument. And the validity of the data. 

2. The strongest argument presented by staff so far is "Other districts are!"  I can just hear my mother in the back ground, "Just because other districts are using cheap gimmicks to raise scores (rather than improving teaching and learning) does not mean we should."  I know of schools where the principal purchased IPODs to raffle during test week (must be present to win). They saw a jump in test scores. Should we set aside funds for a bribe? 

3. There are many examples of raising test scores by focusing on curriculum and instruction that are more professional and in the better interest of students' long term academic success than this proposal.  If the goal is to improve curriculum and instruction, why are we not discussing that? 

4. This strategy engages the most proficient (i.e.: college bound) students only and may exacerbate the achievement gap-- a persistent problem. The fastest and best way to pull up scores in schools (statistically speaking) is to focus on the increasing the lowest scores. Small gains in far below and below basic scores can pull aggregate scores up disproportionately. Yet many of these students are so far behind in the competition for college that transcripts have little value to them. Pulling students in for counseling to set academic goals; immersing them in content area courses that support content area literacy (rather than pulling them out for RTI that causes them to fall behind in standards based course work); assigning faculty mentors who discuss progress in coursework and test scores during tutorial; notifying parents of test scores and offering supports for lower scoring students such as after school test prep courses; heightening community awareness of the importance of test scores for property values and funding; these are strategies that will do a great deal to engage students and families in support of this effort. Of course, this requires effort and thought, which is what the transcript strategy tries to avoid. Engaging students who are disaffected, disengaged and disenfranchised from the schooling process is hard work. It requires courage and educational leadership, qualities we should demand from principals. 

4. The CST produces little information of value about learning; it is a blunt instrument that gives better information about population trends than individual achievement. Or teaching. While we can get individual scores, we do not do item analysis. (see http://www.cde.ca.gov/ta/tg/sr/css05rtq.asp for released test items). 

Item analysis is the only way to yield this kind of information:

90% of teacher A's students answered the item on meiosis correctly- teacher A must be teaching this well. Let's emulate that.

85% of teacher A's students missed all of the questions on Punnett Squares-- teacher A must not cover this. This is a heavily tested topic. Let's review how we teach this and design more effective instruction.

The best way for schools to determine how to improve their coverage in order to optimize test scores is to have department level meetings, with the support of the site educational leader, to review the testing blueprint (http://www.cde.ca.gov/ta/tg/sr/blueprints.asp) compare it to what is being taught and develop rich, engaging units of study around heavily tested topics and themes. You do not need better test scores to do this. In fact, you don't need test scores at all. You just need professional learning communities and administrators who are not afraid to tell their staff that test scores in fact are related to teaching and learning and that teachers CAN raise scores. Back to educational leadership.

It comes down to curriculum and instruction. Candy might help. But I think learning is better for long term health. 

Taking the low road here would signal to me and to many people who are too smart to be fooled by this silly argument that our board does not have faith in our staff's ability to improve instruction and learning by focusing on instruction and learning. What I hear when I listen to these two principals is desperation. I hear an adult blaming students for their own failure to engage, inspire and teach. I feel embarrassed that our district would even consider sending this insulting message to students "Well, we've done OUR best with you, clearly your scores are low because you are not trying hard enough." It is time we all stood up and acted like adults who take responsibility for our work and our children.

Sometimes the right thing is not the easy thing. I think it is time for the board to send a message to staff that teaching and learning matter most. Focus on this, test scores will follow. Let students in on the secret-- under NCLB these scores matter for your school-- they will come through. Just like they do for other inter-school competitions in sports, music and robotics. Have faith in the teaching staff, and in students. Demand educational leadership from administrators.

Gina

ESY: A related service

Citing budget problems, many districts are cutting back on extended school year. Some districts have cancelled it altogether, others are reducing services. One district we heard of is simply not running ESY and offering compensatory services in the fall. This is not legal, as far as I can tell from reading the law. 

It is not legal for districts to make unilateral changes in related services listed on the child's IEP outside of the IEP process. Is your district reducing Extended School Year? If so, it is very important to understand your rights as you prepare to advocate for your child. Better yet, get a group of affected families together and make your case as a class. 

We presented information to the board and requested they use stimulus funds to restore ESY. We hope this will have an impact on the summer programs. 

Wright's law has important resources on advocating for ESY. 

Superstition and Universal Design

I've been thinking a lot about universal design as we work with contractors and local agencies, charities, friends and family to figure out how to remodel our five year old home to make the first floor bathroom accessible for our daughter. 

I know, a five year old home, right? How could it not be accessible already? 

Superstition. I think it is about superstition. 

When I asked a local politician about building codes and why they were not written with this in mind, for example, why any door on any new building in our county or state would be less than wheel chair width, he said first "cost". After I finished gaffawing and pointing out how this is simply erroneous and disinformation (when you build something from scratch, that is the cheapest time to make it accessible, the cost excuse only comes into play during the remodel ordeal) he said something very insightful, and I think very true.

"Not everyone needs things to be accessible! Why build everything that way for the one person who may every use it?"

"Because," I should have said, "You may be that person. I hope it never happens, but YOU may become disabled on your way home after our conversation on universal design." Random events. It is not about luck or karma or some kind of cosmic intelligence doling out rewards to the deserving. About 10% of the population is disabled, after these wars it will be higher, and that 10% is impossible to predict. 

In our school district, more than 10% of our students have a disability, but the board and most of the community still act as if it were a 10 in 10,000 occurrence. 

The only thing I can think of is superstition. 

No one wants to act as if they could be next. No one wants to plan for life with disability when it is not part of their immediate experience. No two able bodies people want to get married and buy a house that is fully accessible, even though the odds are that it would be a good idea-- most of us in old age will need some modifications to our home, if not before. No mother wants to conceive and imagine any thing other than "healthy, ten fingers, ten toes." No district wants to imagine serving even MORE disabled students (as one member of our administration says often, "they keep coming here for the services." So, we act as if ignoring the need will some how prevent the need.

Yet houses built today will have several owners; they should last a century at least. Schools are built and will serve whoever lives within their boundaries for many decades. Sidewalks, streets, subway stations, new malls... the same. We build as if everyone were like us. 

It is way more expensive and inconvenient to remodel. 

And in my experience so far, limited though it may be, building as if disability does not exist does not ward off disability. 

The least effective way we have to deal with our fear of disability is to ignore it. To build our infrastructure as if it were exceedingly rare and unlikely. It is like throwing salt over our shoulders, saying a prayer for a spontaneous healing of Rett Syndrome. Sure, prayer can't hurt, but you might as well get off your knees and say those prayers with a wrecking bar in your hand 'cause ain't no body out there building all houses accessibly, even though a lot of babies needs it. 

And while you're down there, maybe say a prayer that people will come to their senses and build as if disability might someday effect them or someone they love. It won't bring bad luck down on any of us, and it might give the next family a better shake the next time random events play out and they need an accessible bathroom on the first floor. 

Universal Design-- it is an attitude, more than anything. Every architect should have to spend a week in a wheel chair before getting a degree.