Minnesota's state mandated child abuse: standardized testing of special needs students.

This is madness. I have a post pending about the struggles we've had with grading and our non-degree-candidate #1 son; this news story hits on a related topic:

When tests tell teachers nothing: Special needs not met by standardized tests | Twin Cities Daily Planet

...  teacher Rachel Peulen spends two to three weeks administering a test that she knows will tell her next to nothing about her students.

On most days, Peulen’s middle schoolers each work on activities designed to meet their particular needs. One student works on remembering classmates’ names. Another practices recognizing flashcards inscribed with simple words. Her most advanced students do simple arithmetic...

... But over three weeks, Peulen takes each student out of the classroom for up to an hour-and-a-half, so she can ask them to compare fractions, find the slope of a line and identify the main idea of a story. With no additional staff to assist her, paraprofessionals take over the class...

These tests are the equivalent of scoring a paraplegic on their long jump ability.

I hope Nolan Murphy was misquoted here, because he doesn't come across very well...

Minneapolis Public schools’ lead teacher for developmental and cognitive disabilities programs, Nolan Murphy, said some good has come out of testing students with disabilities: more than ever, special education teachers are aligning their lessons with those of their grade-level general education peers.

It's worse than madness, it's pointless cruelty. As a physician I'm legally mandated to report suspected child abuse. So where do I report the State of Minnesota?

Asperger's syndrome and depression

Adolescence is a time for new adventures -- such as depression. It's not clear whether depression is more common in person's with Asperger's syndrome, but since depression is associated with stressful life events it would be surprising if it were not associated with high-function autism spectrum disorder.

As of Nov 2012 there is no useful academic research on the management of depression in the context of autism syndromes at any age. There's no  We do wonder sometimes where all the NIH autism syndrome money is going.

I found two somewhat useful references:

• UK Asperger's Foundation: Depression or mental health in Asperger's Syndrome (discusses other mental health disorders but focuses on depression)
• Autism, PDD-NOS & Asperger's fact sheets | Coping with depression as an adult on the autism spectrum

Physicians used to be taught that there was a clear line between "pathological" depression and the "normal dysphoria" of life in an often difficult world. I was never convinced by that argument. I'm not sure there's even a very sharp line between non-psychotic and psychotic depression -- though that transition is relatively clear. That line is probably even harder to spot in persons with stressful disabilities such as Asperger's. The focus then is on decreasing ability to perform activities of daily living, such as school work. The fear, of course, is suicide.

It's not hard to find semi-scholarly articles claiming that suicide rates are increased with Asperger's syndrome, but even there we see caveats (emphases mine):

... An increased risk of suicide is observed in persons with Asperger syndrome, with risks possibly rising in proportion to the number and severity of comorbid maladies...

In other words we don't know. My own suspicion is that we'll find:

• cognitive-behavioral therapy is useful
• decrease academic stress
• cautious use of antidepressants -- notoriously tricky in adolescents. May prefer to avoid SSRIs.

Special education vs. standards based grading: I think we have a problem

Number one reads and writes at a 3rd-4th grade level. Lately, at age 15, his handwriting has become fairly legible.

We're proud of him. I didn't think he'd learn to read or write at all. it has been a long road with a lot of help from teachers, aides and, yeah, his parents.

Now, as a non-diplomate Setting II student with modifications, he's straining his brain to label mitochondria and endoplasmic reticulum while answering questions about demographic transitions. It's probably not the best use of his time, but he seems to enjoy the work and it's good practice for his reading and writing skills, and even for his very (very) short term IQ 60 verbal memory. We're proud of that too. 'A' work by our standards.

Not by the current standards of his mainstream teachers though. He's getting C- or Fail grades -- despite his IEP. At least one teacher feels this is appropriate since he's "minimally meeting expectations".

Yes, we have a problem.

It's not a new problem. It amazes me how many of his teachers have been unable to read an IEP, and how many seem to lack any low IQ experience. Usually this responds to some education and orientation, but things have been getting worse over the past two years. I think part of the problem is that his school is moving to a recent educational fashion: 'standards based grading'...

Educational Leadership:Expecting Excellence:Seven Reasons for Standards-Based Grading Patricia L. Scriffiny

... standards-based grading, which involves measuring students' proficiency on well-defined course objectives (Tomlinson & McTighe, 2006). Although many districts adopt standards-based grading in addition to traditional grades, standards-based grading can and should replace traditional point-based grades....

... 

An A means the student has completed proficient work on all course objectives and advanced work on some objectives.
A B means the student has completed proficient work on all course objectives.
A C means the student has completed proficient work on the most important objectives, although not on all objectives. The student can continue to the next course.
A D means the student has completed proficient work on at least one-half of the course objectives but is missing some important objectives and is at significant risk of failing the next course in the sequence. The student should repeat the course if it is a prerequisite for another course.
An F means the student has completed proficient work on fewer than one-half of the course objectives and cannot successfully complete the next course in sequence....

...

Students who struggle can continue to retest and use alternate assessments until they show proficiency, and they are not penalized for needing extended time. I guide students with special needs to modify their work and, if needed, develop different ways of demonstrating that they've met their proficiency goals. Their working styles can be easily accommodated in this system because modified assignments and assessments require no special adjustments in the grade book. The grade book simply shows where they are in meeting the standards, without reference to how they are demonstrating their learning or what modifications needed to be made....

I wonder what Ms. Scriffiny means by 'meeting the standards'. Does she mean the unadjusted course objectives, or does she mean adjusted standards? Her meaning is unclear, and that is the crux of the question. Other articles I've found on 'standards based grading' suggest that grades for non-diplomate Setting II students are problematic.

This really isn't a complex problem. There are two ways to think about this, and they both lead to the same outcomes.

One approach is to adjust the goals, and then grade on the adjusted goals. This is an excellent approach, though it requires some thought and help to formulate goals and modifications. That can be a problem. 

There's also a budget approach. Start by asking what purpose grades serve for both mainstream (diplomate) students and corporate executives. They motivate work, they measure teacher or manager quality [1], and they are used to stream students and employees along different paths including promotion, lateral moves (from physics to biology for example), and termination. 

In that context a fixed standard makes sense. But number one is not going to graduate from High School. He is not going to go Michigan State University (his current dream). He is probably not going to have unsubsidized employment. He will probably never live independently. There is no point in streaming him, because he is not in the water. He was beached at birth. For him grades serve only two purposes - they can incent him or they can demoralize him

At the moment, his teachers seem to working on the second mission. Our job is to try to change that, working with both teachers and school leadership. Failing that, our job is to find him a better learning environment.

[1] Alas, both corporations and classrooms are prone to the stack-ranking disease.

See also:

• Be the Best You can Be: Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings) 10/2012
• Be the Best You can Be: Senior High School and the adaptation problem 10/2012

Update: A valued advisor of mine suggests this language be added to the IEP. It says to the teacher, "STOP.... you can't grade the way you normally do."

The case manager may reduce course assignments in number, length, content or weight. Alternative assignments need to be arranged between case manager and teacher.

Grading Modification:

Grading may be based on a student’s personal effort in consideration of the student’s own skills/strengths and disability. Casemanager will help determine appropriate grading. Factors such as attendance, class participation, or other appropriate measures should be used to determine a grade if necessary.
Student should not be graded based on meeting the course requirements set for non-disabled peers. Instead, grading should be based on ...

Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)

Every discipline has its own special language, and special education is no exception. Common words, like 'accommodation', 'adaptation' and 'modification' can take on special meanings. After years of using these words, it may be surprising to learn that not everyone knows what they mean.

Certainly I was surprised to learn, after years of being a special education parent, that for some teachers there's a significant difference between 'adaptation' and 'modification' in special needs education, whereas for others the terms are synonymous. There appear to be local usage variations and it's not clear that regular education teachers, especially novice teachers, understand the distinctions as well as special education teachers.

From what I read the term accommodation is consistently used for relatively modest changes to education and examination. A student may have additional time to do an exam, or may hear questions rather than read them.

The term modification is usually used to refer to significant changes to a curriculum or testing process. My rewrite of a standard 9th text in World History to a 4th grade reading level would be considered a substantial modification. I believe in some locations the words "change in rubric" is used to mean modification.

The term adaptation is sometimes used as a synonym for 'accommodation', sometimes as a synonym for 'modification' and sometimes for something between the two. The meanings appear to be regional, but this British Columbia school district description matches what I hear from a Minneapolis Special Education teacher ...

Adapted and modified education programs

Adapted Program

This is a program that retains the learning outcomes of the prescribed (regular) curriculum but adaptations are provided so that student can participate in the program. Examples of adaptations include assigning a 'buddy' for note-taking, assigning fewer examples for practice, extending time for assignments and tests. Students on adapted programs are assessed using the provincial curriculum standards set out by the Ministry of Education.

Modified Program

This is a program in which the learning outcomes are substantially modified from the prescribed curriculum and specifically selected to meet the student's needs. Examples of modifications include the student being taught the same information as other students, but at a different level of complexity; or given a reduced assignment (e.g., fewer questions to answer); or the student uses a lower-level reading textbook. A student on a modified program is assessed in relation to the goals and objectives established in the student's IEP.A student's program could include some courses that are modified and others that are adapted.

Another BC document makes clear the practical distinction between adaptation and modification:

Although decisions about modifications to a student’s courses or subjects may take place in grades earlier than Grade 10, a formal decision that an overall program is modified does not need to occur until Grade 10.  The decision to provide modifications, particularly at the secondary school level, will result in students earning a School Completion Certificate upon leaving school rather than credits toward graduation ... 

As a parent of one special needs child who will not graduate from high school, and another who should graduate from college, I love the clarity of the Canadian (BC specifically) distinctions. Adapted means regular diploma, modified means no diploma. 

Knowing this, it's possible to squint hard at a No Child Left Behind document on adaptation vs. modification and spy the political subtext. There are big racial achievement gaps in American schools (Koreans do best), and the there's considerable pressure to do 'adaptations' rather than 'modifications' so more kids get diplomas and go to college. This may explain why some school districts appear to be emphasizing adaptations, and why there appears to be no money, and no market, for adapted modified textbooks. Without adapted modified textbooks, and with cuts to special education resources who can do modifications, we have the situation of my son's utterly incomprehensible college-level human geography text and his impossible biology exams.

Mainstream teachers don't have the time, and perhaps not the training, to do modifications, and it's absurd to think that a shrinking number of special education teachers can generate a unique modified textbook and curriculum for every student. Of course there's no reason someone like me couldn't do modified textbooks to be distributed nationwide, but that appears to be quite inconceivable.

See also

• Senior High School and the adaptation problem
• How a teacher can eliminate special needs students
• Mainstream special education - #1 did a ton of work in last year's world history class.
• Adaptive texts for Special Needs students - Human Geography
• Adaptive textbooks for special needs learners 10/2011

Update 10/22/2012: 

In the US the "Settings" concept is an important complement to the model of adaptation (diploma) and modification (no diploma). There are Levels of "settings":

• Setting I: less than 20% of time in special education setting
• Setting II: 20-60% of day in special education setting
• Setting III: more than 60% of day in special education setting

I suspect Setting I is consistent with Adaptations and a diploma, Setting III means modifications and no diploma and Setting II could go either way.

In the case of my #1 son he's currently in Setting II but might do well in Setting III. At this time, however, he strongly prefers Setting II. I suspect that our school has a limited capacity for Setting III, so Setting II is the only thing we've been offered. That could work well if there were resources to provide modifications for Setting II, and if mainstream teachers were keen to use those resources. Instead we've found our mainstream teachers claim to be completely unaware of how to do modifications; sometimes those claims are credible.

Adolescence on the spectrum: new obsessions, new challenges

Obsessive interests are often associated with Asperger's, but they're common to many cognitive disorders. This UK page has a good discussion ...

 Obsessions, repetitive behaviour and routines - | autism | Asperger syndrome

... People with an ASD have many different obsessions but some of the more common ones include computers, trains, historical dates or events, science, or particular TV programmes. Many younger children with an ASD like Thomas the Tank Engine, dinosaurs or particular cartoon characters. Sometimes, people develop obsessions with things like car registration numbers, bus or train timetables, postcodes, traffic lights, numbers, shapes or body parts such as feet or elbows.

People with an ASD may also become attached to objects (or parts of objects), such as toys, figurines or model cars - or more unusual objects like milk bottle tops, stones or shoes. An interest in collecting is also quite common: it might be Star Trek DVDs, travel brochures, insects, leaves or bus tickets....

Like most writing about Asperger's and ASD the focus is on childhood behavior. That suggests this problem improves during the teen years.

Maybe it does - for some. Or maybe it merges into the common obsessions of most teenage boys. For some reason we don't read many articles about the merger of adolescent hormones with obsessive dispositions. Still, some of these child-oriented management techniques may still be applicable in teens ...

... You could set limits in a number of ways depending which behaviour concerns you:

ration objects (eg can only carry five pebbles in pocket)
ration times (eg can watch Thomas the Tank Engine DVD for 20 minutes twice a day)
ration places (eg spinning only allowed at home).

... example of how to set limits.

Identify the repetitive behaviour, obsession or routine of concern. Jane likes to talk about train engines. Jane currently starts talking about train engines after about ten seconds of conversation for up to 15 minutes.

Think about reasonable limits you can put in place that your child can manage. Behavioural change is most likely to be successful and your child less likely to be distressed if you start small and go slowly. Jane is allowed to talk about train engines after 20 seconds of conversation for five minutes only. She is also getting social skills training.

Gradually increase time restrictions and introduce other limits. Jane is first allowed to talk about train engines three times a day. Then, Jane is only allowed to talk about train engines with her family three times a day. The eventual goal is for Jane to speak about train engines to her family only for one minute, twice a day.

If you place limits around obsessions or repetitive behaviour, you might need to think about things your child can do instead: perhaps joining a club or group; taking up a sport or leisure activity; or entering further education, job preparation training or employment if possible...

The last item is perhaps the most interesting. There seems to be a need for the autistic mind to focus on an anchor and return to it repeatedly. If one obsession is problematic, try to find another to take its place ...

Senior High School and the adaptation problem

American senior high school might be weak by world standards, but the topics are far above what I did 25 years ago. Consider these mainstream 10th grade "human geography" questions, based on a college freshman textbook that's too expensive to distribute to students:

1-NIR Map pg.54-What continent has the highest overall NIR rate-explain why you think that is?
2-TFR map pg.55-Why do you think North America has a TFR of under 2.1? (give one reason)
3-TFR map pg.55-Why might the TFR in Africa be so high, 4.0 or above for most countries (one reason)?
4-Babies born in sub-Saharan African countries can expect to live only into what age (life expectancy)?

Yeah, Houston, we have a problem. A problem for special needs students, and, I suspect, a problem for the 30-40% of the student body with an IQ under 100. This might explain something about drop out rates for neurotypical children.

Broader societal issues aside, there's a big adaptation challenge here. It's possible to create an adapted text, but it takes work to translate the topics and questions to a sub-80 IQ. Even if there's a parent willing and able to do the work, a teacher has understand how to manage adaptive grading within the framework of an IEP.

I said 'a teacher', because our school district recently shifted all adaptation responsibilities to teachers, while deprecating the role of special ed teachers. Our experience is that teachers aren't doing this.

We don't know why they're not doing the adaptions. Based on experience with medicine [1] and corporate life, we suspect the root cause is some mixture of lack of training, lack of experience, lack of local leadership, perverse incentives, lack of interest, and lack of time. In some cases teachers seem to think that minimum wage aides can manage the adaptations (surprise, they can't). Sometimes, as parents, we find ourselves training teachers on basic adaptation principals.

We probably can't fix the "perverse incentives" problem -- especially because we don't know what they are. Instead we need to find ways to put pressure on local principals, so they provide the leadership to address the training and incentive side of the problem.

[1] Almost everything that's true of medicine is also true of education - and vice-versa.

See also: 

• How a teacher can eliminate special needs students
• Mainstream special education - #1 did a ton of work in last year's world history class.
• Adaptive texts for Special Needs students - Human Geography
• Adaptive textbooks for special needs learners
• High school tips (grade 9)

Pushing the envelope does not always go well

Nine years ago a girl drowned in a Minneapolis lake.

That is a sorrowful story that is told many times in many places every year. This particular tragedy, however, had a twist ...

Michigan girl drowns in Minneapolis lake 7/19/2003

 ... A 7-year-old blind girl from Michigan drowned Friday night in Lake Calhoun in Minneapolis while she was swimming with fellow blind children. The girl was with a group of about a dozen visually impaired children from Blind Inc. in Minneapolis. They were off the north beach when lifeguards doing a safety check noticed her missing ...

She was pushing the envelope, doing something many blind people don't do. Sighted kids drown in lakes too, but her risk was above average.

Maybe her parents beat themselves up. Maybe some people thought they were careless parents. I don't know the details, but from my distance I wanted to say to them - forgive yourself. Disability means a full life is often riskier than average -- but all life is risky. None of us get out of this alive. Most us don't want to live in a padded room for as long as possible, we want the best life we can have. We take risks.

So today I took a risk. Nobody died, nobody was even hurt -- but it could have been worse. Seems only fair for me to share a story of an experiment that went off the rails a bit.

It began with a mountain bike outing to the new and superb Lebanon Hills trails. All three did well on the skills section; #1(ADHD, autism, anxiety, low IQ)  bopped through the intermediate stuff without blinking, and #2 (Asperger) was right behind 'em. So we set off on the green trail. #3 (neurotypical) was working through a bit of trail anxiety, so we fell behind the guys. 

So they got bored, and took off on the blue trail. Otherwise known as "the trail of tears", though I didn't learn that name until later.

#1 called to tell me he'd gone off, but I didn't know the trails that well and assumed he couldn't get that far. (I had scanned the trail map, but didn't notice the long, long blue trail on the section I'd studied). Back at the trailhead a cyclicst overheard me talking about the blue trail with #1, and, being a wise stranger, she butted into "my business" (joking there, I was grateful) and clued me in. Meanwhile #1 was getting anxious and agitated and had split from #2, and #2 had run out of mobile minutes while I was pinned down in the parking lot with #3. 

It looked like we were running out of options, but before I could plan the 911 call my helper called in her husband and his friend and they took off down the blue trail at full-rescue velocity. Got to the boys just as an increasingly agitated #1 was going to split for a roadway he could see in the distance. They were all back about twenty minutes later.

So, in the end, pushing the envelope turned out ok. The boys learned some valuable lessons about being lost like "stay together, don't split up" and "stop and stay on the trail" and "wait for Dad" and "if you're lost, choose a trustworthy looking stranger and ask for help" [1]. I learned that I should give #2 son the "tracer phone" [2] on mountain bike trips, and that I should have printed, labeled and distributed maps the night before the trip.

Next time we push the envelope, I hope we'll have a larger margin of error. Meanwhile, thank you Greater Mankata Multisport Club heroes!

[1] Yes, this sounds odd in the world of 'don't talk to strangers'. Surprise -- the risk of approaching a stranger for help is extremely low. The risks are when strangers approach unsolicited, especially in non-emergent situations.
[2] We have one kid phone with a data plan that can be a locator.

A lawyers guide to the high-evidence IEP process

IEPs and Evidence was written by Katie Kelly, a special needs lawyer and mother of two special needs children. It's a more adversarial approach than we've had to take - so far. I recommend reading the original and saving the document. For example:

Prior Written notice. ... The PWN is a procedural safeguard that makes the school put in writing the service or Individual Education Plan (IEP) term you asked for, the data they considered in refusing you that service, and their reason for doing so.  You will not get a copy at the meeting; it will be mailed to you.  It should be very specific.  Warning: the school will make it as vague as possible.  Tell them to do it again using the specifics that you got entered into the meeting notice...

She recomends recording all IEP meetings, optimizing formal minutes, using email to document and clarify all communications and actions, and dedicating a special journal to each IEP. The first two we haven't done and won't start doing until we see more trouble. Email and a special journal are easy to do anywhere.

Sports and athletic participation for special needs students -- and all non-elite students

Recently I reviewed the state of school-based athletic opportunities for special needs students (see also Special Hockey).

The benefits of athletic involvement are clear. They're the same as benefits for neurotypical students, only more so...

1. Kids who are physically active to their personal bounds are happier, sleep better, and are easier to work with.
2. We know the best way to boost a middle-aged brain is to exercise (forget crosswords, get up and walk!). There's good reason to think exercise is good for young brains too.
3. For many of our community team activities, from hockey to cross country running, is the best way to develop social skills and friendships.
4. For some special needs kids athletic activities can become a major part of their adult life -- indefinitely. (We have special hockey players in their 50s.)
5. Special needs kids are just as vulnerable to obesity problems as neurotypical kids.

 It's not easy to make this happen though. American schools are notorious for focusing on elite athletics, to the detriment of all non-elites. It's a big problem, but we can chip away at it.

One area we can manage better is the distinction between CI (cognitive impairment) and PI (physical impairment) events. in our school district kids with autism are technically excluded from PI events (in practice "fine motor deficit" can used to fudge the distinction), but CI options can be very limited even for low IQ autistic kids.

The CI/PI distinction is fuzzy. Many CI athletes have some physical disabilities, and most of the PI athletes I know have had at least a learning disorder. I suspect the division was created when Downs Syndrome was more common, and autism less common (or less recognized). We need to develop a more flexible approach.

Special Olympics has done a good job of adapting to changing demographics of special needs, but the schools might be a bit beyond the curve. On a smaller scale Special Hockey has managed to work with a wide range of both cognitive and physical disability -- all on one team!

In the near term I hope we can generate increased demand for activities from special needs parents, and provide more support for volunteer coaches and managers while learning from Special Olympics and Special Hockey. In the longer term I hope to see a kind of reverse- "inclusion" in special needs sports. What we learn from special needs school athletics may work well for all non-elite students.

Mainstream special education - #1 did a ton of work in last year's world history class.

When I clean out the kid's notebooks I take photographs of selected writings and diagrams. I can't keep all their work, but I can keep the pictures. Today it was time to recycle my son's 9th grade world history notes. That's the course for which I wrote an adaptive textbook in world history, similar to the "human geography" text I'm writing now.

He did a ton of work. I hadn't remembered how much he did, but wow, he worked hard. (We worked hard!). He did that work despite a teacher who, like one of his current teachers, struggled with grading special needs students. If he'd felt encouraged, he would have done even more.

I struggle with this kid a lot. Sometimes things get hard -- and I have to find ways for the two of us to just have fun together [1]. In the midst of this struggle I can miss how much he does.

Yeah, I doubt he retained all that much about China's dynasties, but I think some of it's rattling around in his head. More importantly, he developed some more reading and organizational skills. He reads at a 3rd grade level -- but mainstream 3rd graders don't do the work he did.

Today, in the geography homework I made for him, he evaluated flight paths from Minneapolis to Beijing on a world map and a globe and then compared the results to the NWA web site. I swear I saw a light go off. Later I found our globe near his bedroom.

Mainstreaming is very hard, but it's not a bad thing.

[1] A round of 9 hole golf can go a long way (his sport, not mine). I can't be improving him all the time.