The basic message: Figure out how to educate these kids alongside their peers, without regard for how much it costs. Of course, it's way more complicated than that — hundreds of pages of complicated, including several re-authorizations by Congress to tweak the law.

And then came charter schools. Special education law applies to all public schools — both charter and district — but many charters manage to wiggle out of it by pushing out special-needs students. Hence, the new segregation.

Hope Kirsch, a special education lawyer in Scottsdale, has noticed it. Kirsch says she taught school in New York from 1975 to the early '90s. She was assigned to work with special-needs children; inevitably, she recalls, her classroom was in the school basement or the top floor, "shoved away, very segregated."

Self-portrait by Sophie
Sophie
Self-portrait by Sophie

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She became a lawyer and was delighted to see strides made in special education later in the '90s and in the 2000s, in which special-needs kids were mainstreamed in the classroom with typical kids — something she says was good for all. But that, she says, has been short-lived, ironically because of school choice.

"We're going back to the days of institutionalization," Kirsch says.

My challenge to educate Sophie began even before she was old enough to attend public school.

When she was 2, I began looking for a preschool/childcare option that would be both safe and enriching. Sophie was the first person with Down syndrome I'd ever met, and in 2003, the year she was born, doctor no longer told you to institutionalize your baby with DS. To the contrary, the advice from all quarters was to put her alongside her typical peers as much as possible. That's called inclusion and depending on the specific circumstances, it's widely considered a good thing for both disabled and non-disabled kids.

Frustrated with a lack of quality among some of the childcare centers I'd visited, I figured I'd go for broke. I called Awakening Seed, a prestigious, expensive private school well-known in Phoenix as the place where progressive, well-educated parents sent their children from an early age.

I was shocked when the owner informed me: "We don't take children with Down syndrome" and then told me to call the state, which offers the services I was looking for. (The state doesn't, by the way.)

From then on, I learned not to take any placement for granted. But that's not to say we didn't have tremendous luck. The Child Development Lab at ASU had never had a child with Down syndrome in its program, as far as I knew, but Sophie was accepted with open arms and thrived there. Yes, it was a challenge as other kids learned to walk, potty trained and stopped using sign language while my child lagged in those areas. But her language and social skills developed quickly and, eventually, Sophie did walk, talk, and go to the bathroom on her own.

Tempe Elementary School District has a fantastic preschool program that mixes special-needs kids with typical peers, and by the end, the staff was telling us that Sophie was one of the brightest kids with Down syndrome they'd ever met.

But their formal recommendation was for her to attend a school in the district with a pull-out program for kids with special needs, rather than our neighborhood school, which Sophie's sister Annabelle already attended.

I held my breath and held my ground. Sophie was enrolled at the neighborhood school. We had a bumpy start. At one of the first meetings with her teachers, therapists, and principal, I complained that the kindergartner-to-adult ratio on the playground at lunch was 100 to 1. Would anybody be able to watch Sophie during the 15-minute lunch recess?

The principal looked up from her BlackBerry long enough to remark that if Sophie couldn't act like a typical kid, we'd need to look for a placement at another school in the district.

I blinked back tears, refrained from using (too many) expletives, went home, and solved the problem my way. If the school wouldn't give Sophie extra help, I would. I got on the phone and started hiring. All that year and well into the next, a series of ASU education students showed up at the school to "volunteer" — all in Sophie's class. I paid them hourly, under the table.

No one asked questions. It worked. Sophie was safe and able to attend school with her sister and the kids from our neighborhood. On the fourth day of kindergarten, she made a friend, a typical girl named Sarah.

"Sarah's the youngest of four kids," the teacher told me. "I think she's looking to be a big sister. This is good for both of them."

And how. Six years later, Sophie and Sarah still are best friends — an odd couple, since Sophie is the smallest fifth-grader and Sarah's among the tallest. The girls are inseparable.

Eventually, my makeshift "volunteer" system didn't work anymore. Sophie needed professional help. So when she was in third grade, I hired a lawyer and fought to get her a classroom aide, who worked with Sophie when she needed the help but "pulled back" to assist with other tasks in the classroom and the school when she did not. I'm so glad I did it — in my mind, at least, that allowed Sophie to be safe at a place that has so much to offer.

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12 comments
agertejj
agertejj

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JacobWentz
JacobWentz

Amy, few parents will navagate public education without a few ups and downs, great and not so good experiences with teachers or administrators. Those with special needs children will be magnified by an order of magnatude. American life is full of these legal contridictions, services without reguard to cost, then some local burocrat must administer a functioning program with limited resourses, the bigger the government gets the less accountable it will become. It is interesting, you have two children, one in charter one in feeder (public), they both seem to be thriving, on the micro a left right ballance, how quintessentially american.    

ipolitics123
ipolitics123

"... specifically declared that money is no object in the education of mentally retarded and mentally ill children. "


Wow, that's quite a sweeping law.   "Money is no object?"   Where do the rest of us sign up for a deal like that?   I remember money being *quite* an object in my own education.   


I'm sure the author means well, and I'm sure she genuinely loves her daughter and is not just using her as some kind of left-wing poker chip.   But the "mainstreaming" movement has high costs, both monetary and non-monetary.  


For the monetary costs, a single "special needs" child can soak up something upwards of 2 to 3 times the cost of an average kid (http://education.cu-portland.edu/blog/special-ed/mainstreaming-special-education-in-the-classroom/).   That means for every special needs kid, two other children will go without - or their education will go on our big National Credit Card (like everything else these days.)


The non-monetary costs can be even grimmer:   Several years back a Maryvale teacher had her jaw broken by an unhappy "special needs" student who was "acting out."   Oopsie - who picks up the tab (and the teeth) for that episode?   


Another cost:   Parents of regular kids in class with mainstreamed "special needs" children complain that their children are ignored and aren't learning, because the teacher or teacher's aide is spending all their time changing the special needs student's diaper or keeping them from eating glue or breaking things (like jaws).   


Like I said, I'm sure the author loves her daughter.   But mainstreaming makes things better for some by hurting everyone else, financially and otherwise.  Difficult situations make for difficult choices.   Stupid court decisions which say "money is no object" allow a judge to feel Really Good About Themselves, but they hurt the rest of us and in the long run they even hurt those they're designed to help.

phale68993
phale68993

It's the rare charter that has any component for a child with an IEP. As a Special Education teacher turned administrator, the best place for Sophie is a public school. Public schools as you mentioned, have resources for occupational therapists, physical therapists, speech therapists and many more. My school has six Special Education classes and the students are mainstreamed as much as possible, yet have access to the specialized services they need. Deer Valley uses a full immersion method, with Special Ed teachers as resources.


Charter school funding, which is greater than public school funding is starving public schools. Parents don't really need "choice," the buzzword of the right.  Parents and communities need great public schools in their neighborhoods.

One last thought. Charters were supposed to be the cure for the "failing " public schools. Public schools were never failing, and charters just serve to resegregate America. So how are those 87 new Charters started in 2013 doing? Mediocre, like the rest and no panacea at all for what ails public  education.

Good luck to Sophie. She sounds absolutely delicious!

serpico1000
serpico1000

I still can not understand the State's Ideology of pushing for Charter Schools, other than to, first get rid of the teacher's union, then get rid of the teachers who were or are fully vested in their retirement and have that program no more, create a system of educators who would be paid  one third, or less of the regular pay for a teacher, change the rules in seniority or entire benefits for them, require certain guidelines for teachers, change the teaching programs less or no music programs less or no P E programs, intensify academics with even low passing grades. in other words take full control of the children's education with a minimum expense from the State but rein in curriculums that might be defiant or threatening to the State and still have companies, and Corporations fund these Charter Schools then be deducted from their taxes, ultimately the average tax payer would be hit with the difference, and Companies and Corporations would have another big Tax brake!!!!!!!very sneaky !!! very creative, but very Political!!!!                    

....
....

I had an IEP, and I was terribly served, I was very lucky in that I had very very strong-willed parents who were willing to fight for me. Despite doing most of my work and doing everything it took to get good grades, my teachers would still try to fail me. One of my teachers failed me even though she had once asked me to present a powerpoint to the class on one of the lessons, to make a long story short, in her class I did higher quality work, at an exponentially faster pace than the other student, without the help of the textbook, and that teacher still gave me an F, She was fired the next year, and I almost didn't graduate. For the sake of good karma, I will not mention her name, though it is very tempting. I also would get good grades and be refused higher-level classes, and I did better than most students on my test scores. High school was hell, and It took a lot of a$s-kicking to get the incompetent administration to start acting right. Thanks to them, I have no foundation in math (despite showing potency in the subject, they really screwed up, and I'm still quite pissed off about it.) Point is, there is a lot more problems with special education than people realize, everything from underfunding, to the underestimation of potential skills. All I have to say about those in charge of handling special education. (with the exception of those few who actually try to do their jobs, If God exists, bless them) You apes... >:( my temper is boiling just thinking about the how wronged so many are in this society.

rykatco1
rykatco1

Amy, thank you for bringing this problem to light.  I am a retired Title I teacher here in Phoenix.  I am very upset about what the charter movement is doing.  I left teaching two years early due to the stress and frustration.  I had many children in my class for the last several years who needed more assistance than I could give them.  I had children that I suspected had autism, learning disabilities, emotional/behavorial problems.  I would bring the documents I had of their problems to "Child Study" to discuss their issues.  This is a panel of (usually) principal, counselor, teacher and sometimes other teachers.  Most often the teacher would be told to try more strategies.  I would go back and try the strategies, which most often did little or nothing.   There were times when teaching was very difficult.  I am happy you fight for your child.  Many of our Title I parents do not understand their rights, they are too concerned with putting food on the table (poverty), working many hours, do not understand the educational needs of their child(ren), etc.  


It was not until after I retired and began following Dr. Diane Ravitch's blog that I began understanding what was happening.  Charters "cherry pick" as you have stated.  They don't "encourage" kids with special needs at their schools.  Some charters will take students until the term of the funding is used and then get rid of the students.   Public schools take these students with no funding.  Title I funding was cut, so many children are not being served.   It was never that I didn't want children with special needs in my class.  What I wanted was to be able to give them the assistance they needed.   One time I had a young teacher visiting from London.  I'm friends with her family.  She came to my class for the morning.  She told me that in England, I would have had an aide for the number of children that had needs.  She is a teacher for young students getting out of prison.   Instead, my students' test scores were used against me and their behaviors were, as well. There are many teachers who have experienced the same thing or are experiencing this.   Most teachers are not the problem--the current system is.  Charters have created segregation against children with disabilities and also children of color.  This country fought so hard in the '60s to work toward the end of segregation.  I am not proud of what is happening.  I have read that some parents who have children with special needs are happy with charters like the one who serves autistic children in Scottsdale.  I am happy they are able to get their child's needs served.  But most children of poverty cannot take advantage of these schools.   Why not fix the public schools and make them better for all?  I have paid taxes in this state for a long time.  I do not want my taxes going for large salaries for the heads of some of these charters.  Please continue to investigate and report the debacle that is our current system.  Thank you.  

coper1658
coper1658

Amy good to hear U R still out there for the people. I have been reading your stuff for as long as U have been with the New Times. But then I have been in Phoenix since 1950. 

I will be brief. I am a 73 year old republican that believes charter schools are NOT public schools and we do not need them. U want to send your kid to a private school, fine you pay for it out of your own pocket. and no tax break or vouchers. I believe in Public Schools as exited prior to the greed merchants legalizing Charters. Public schools are a microcosm of the real world. Charter schools are dark halls of stiffing bigoted philosophies. All schools should be required to handle special needs students.

And how is it we supposedly live in the "greatest " country in the world and we put people that want a college education in dire debt?

dkessler4
dkessler4

@ipolitics123 This was not a stupid court decision if you understand their rationale.  Parents of children with handicaps pay taxes to support the schools just like the rest of us. The courts determined that this entitles all, not just some of our children to an education.  Handicapped kids were not receiving  an education due to any of a number of excuses from the schools, including lacks of funding and resources. In that context they were told to fund special education.  The decision to educate was clearly the right thing to do.  The courts understood that handicapped children often do not develop normally and would not always benefit from some age related classroom activities.  An IEP tells how you will modify the normal classroom setting or support it in the achievement of the goals that are recorded there.  Handicapped children are not entitled to the "best" education but are afforded an "appropriate education" as are all other students.  "But mainstreaming makes things better for some by hurting everyone else, financially and otherwise."  I'd like to suggest that if your kids are not being educated with at least some disabled kids that they are likely to be in a setting that not only does not resemble the real world but that it doesn't do all it could do to teach your kids how to get along with all there. Before you blame funding on handicapped kids you might write a letter to an editor or to your legislator and ask why Arizona has the lowest per pupil funding in the entire country.  Deceptive and disingenuous legislators like Yee and idiots like Huppenthal are responsible for Arizona's lack of funding, not handicapped kids.  

dkessler4
dkessler4

@phale68993 As another person who has helped to write several thousand IEP's in the schools I have additional suggestions for someone else who might be in Sophie's position.  If you are in the public schools have a very detailed IEP written there.  Be sure that the evaluation that was done gives valid information regarding your child's capabilities and limitations and the adaptations that are needed in school for your child.  If your child's evaluation does not contain valid information regarding your child's capabilities and limitations, request another,  IN WRITING.  The schools have 60 days to honor your request and complete the evaluation or to tell you why not. When you enroll at the charter school, give a copy of the IEP to the school. They will have the option of accepting and implementing the IEP as written or writing another. The IEP should detail what services and adaptations are needed to meet your child's capabilities and limitations.  If your child receives related services such as speech or occupational therapy be sure that those goals are on your child's IEP.  The school cannot discontinue the services unless another evaluation determines that they are no longer needed.  If a new IEP is written again be sure that your child's capabilities and limitations are addressed and that any needed modifications to a normal school program are recorded there.  Bring a Department of Education advocate with you to assist at the charter school with the IEP process.  Charter schools  don't play this game in front of Department of Education personnel.  They only do so in private to parents of handicapped kids.  They know that their statements violate the law and they also will not make statements about their lack of resources if the conversation is recorded. Be sure to do so openly should you choose to do so.   Don't be afraid to advocate for your child and do not apologize to anyone about it.  You will be surprised how much support you can receive from school personnel. Those of us who have spent our lives working for the schools did not do so to get rich.  Few are getting rich when Arizona's per pupil expenditures are the lowest in the nation.  We did so because we receive our rewards from watching kids grow and succeed.  Look for these people at your child's school.  They are there.  Sophie is certainly a lucky girl.  She has parents who care enough and love her enough to do the right thing for her. The best school in the world could not give that to her.  

dkessler4
dkessler4

@serpico1000 You are right!  I worked in education for over 35 years all over Arizona in the elementary schools.  I'd advise anyone who now considers a career in education to either leave the state or choose another field.   Yee and Huppenthal do not support public education by their actions.  These disingenuous people have made sure that our students have the lowest per pupil expenditures of any in the nation.  Since our legislature tries to fund education with no money I guess we should not complain about the highest dropout rates in the country and all of the other bottom of the barrel rankings that Arizona students have earned.  Don't blame the kids for this.  This is not the fault of teachers some of whom I have seen with 40 students in their classes.  Follow the "lack of" money and watch Yee and Huppenthal rob  our children blind.  Huppenthal recently called all who receive food stamps lazy pigs. When you disrespect a full 30% of the parents and students in Arizona schools do not interrupt me to tell me what a good job you are doing.  Unfortunately, in Arizona we spend more money to put our citizens in jail than we do to educate them.  In other more enlightened and civilized parts of this world that would be considered reprehensible and immoral.

 
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