Looking Back (Part 3)

(For the past two weeks I have been writing about my own experiences as a young education reporter. Here’s another segment.)

In my mind’s eye, I can still picture the vast, dimly-lit room. About half the size of a football field, it was filled with men, women and children strapped into wheelchairs or otherwise restrained. If I close my eyes, I can hear the wailing and moaning, rising and falling in a cacophony of animal sounds that I never would have imagined humans were capable of making.

This ‘snake pit’ was in New Mexico’s main facility for handicapped children and adults, the Las Lunas Hospital and Training School. How I ended up there in 1979 with my tape recorder requires some explanation.

When I arrived in Washington in 1974, handicapped {{1}} children were the center of attention. The Congress had become aware of our failure to educate some children simply because of their mental and physical differences.  Out of the estimated eight million handicapped children, one million were receiving no formal education at all; some were kept at home, while others, abandoned by their families, were doomed to spend their lives in institutions like the one in New Mexico. Still more handicapped children went to special schools, which often provided little more than custodial care, or were isolated in regular schools.

Legislation was working its way through House and Senate committees. In the White House, Gerald Ford (our new President after Richard Nixon’s resignation) was hoping it would not pass, because, as a Republican, he felt that education was a state responsibility.

Despite Ford’s objections, Public Law 94-142, “The Education of All Handicapped Children Act,” passed easily in 1975 {{2}}.  It told states they must provide a ‘free and appropriate public education’ for these children {{3}} in what was described as ‘the least restrictive environment.’  Schools must prepare an IEP, an individualized education plan, for every handicapped child, with the involvement of parents, and these IEPs would become the road map that schools would be accountable for following.

Federal money for this new effort was ‘authorized’ but not provided in PL 94-142, because actually setting aside the money is the responsibility of another part of Congress, its appropriations committees.  That would turn out to be a huge problem, and PL 94-142 would become a poster child for what are called ‘unfunded mandates,’ when Washington tells states what to do but doesn’t pay for doing it.

Knowing that a veto would be overridden, President Ford reluctantly signed the bill into law. He showed his displeasure by banning photographers from the official signing.  No pictures exist. No ceremonial pens handed out either, apparently.

PL 94-142 did not become effective immediately but gave the states until September 1, 1978, to be in compliance.

Curious about the states that seemed to be ignoring PL 94-142, in the spring of 1979 I went to New Mexico, one of the holdouts. My 8-year-old son, Josh, was with me, because I had told my children that they could travel with me as soon as they could read (which turned out to be a great incentive).  We stayed for a couple of nights in Albuquerque with the Monzano family. Their Down’s Syndrome son David, 15, and my 8-year-old got along well because they were about the same mental age. I believe that experience helped Josh develop into the open-minded man he is today.

The next day was a different story.  As soon as I heard the dim sounds of keening and wailing, I knew that what was ahead would not be appropriate for an 8-year-old. I told Josh that he should get out his book, and I left him in the waiting room.

Inside was that unimaginable snake pit.  My guide led me toward the distant corner where the ‘retarded’ children were kept. Along the way she stopped to point out an adult in a wheelchair, his arms and legs restrained. His name was Charlie, and he was, she guessed, in his mid- to late-twenties.  Charlie’s neck was puffed up like two softballs, one on each side, the grotesque growths expanding and contracting as he breathed.

My guide explained:  “If you watch him, he’s pulling air in through his mouth into a cavity that he’s probably created over the years, between his carotid arteries and his skin…It’s very self-stimulatory, and this has evolved over the years. This fellow’s been institutionalized ever since he was a young infant, and I guess in earlier days he was considered to have no potential for anything at all. People just left him to his own devices, and he began to self-stimulate.”

I asked her how children ended up in such a horrible place.  Sometimes, she told me, babies and infants were left on the doorstep during the night, abandoned by parents who couldn’t cope.  When she saw my skeptical look, she told me about the Christmas cards.  The institution sent holiday cards to the parents or guardians of all the residents every Christmas, and every year at least half of them came back marked ‘Addressee Moved, Left no Forwarding Address.’

In the children’s corner, she introduced me to Bill, a young man in a wheelchair. He was 21, a quadriplegic who could not speak, the result of cerebral palsy.  But he could move his head, and he smiled as we were introduced. He was wearing a miner’s helmet with a lamp, and on the front of his wheelchair was a blackboard with common words like ‘feel,’ ‘need,’ ‘hungry,’ ‘love,’ and the pronouns in boxes.  Around the edges of the blackboard were the letters of the alphabet, and in opposite corners at the top, the words ‘YES’ and ‘NO.’  On the bottom were the days of the week.  Using his lamp to shine on words and letters, Bill could communicate with others.

Bill was clearly not mentally retarded, but he was in the state hospital that housed the mentally retarded.  I asked her how this could have happened?

“Because Bill is so physically handicapped he could not–okay, there are certain tests that they run through these children or adults that, because he was handicapped, he couldn’t do certain testing.  And so therefore they had diagnosed him at lower functioning.”

What she was saying, basically, is that almost everyone in the institution just assumed that physically disabled individuals were also mentally retarded and therefore just given minimal care, and no education to speak of. Bill got lucky, because one day an attendant thought she saw a light in his eyes, more than just a glimmer of intelligence, and so she and others improvised ways to teach him to read and compose messages.  He had learned rapidly, she told me, and now he could carry on a conversation.

“He’s very aware of everything. In fact, he’s pretty–he can be pretty conniving.  He’s got us all jumping. I think that, if Bill would have been given the educational opportunities, he could be at a very, very high level.”

Then I interviewed Bill, saying aloud into the tape recorder what he signaled with his head lamp. He told me that would rather be on television than just plain old radio, smiling as he wrote those words.  Here’s the end of that interview:

“What do you do on Sundays?”
C-H-U-R-C-H
“Church. You go to church on Sundays?”
YES
“Do you believe in God”
YES
“How many years have you been going to church?”
TWO
“Two years. Got it. Thank you, Bill.”
GOODBYE.  I LOVE YOU.

Of course, I could not keep from crying.  Was I shedding tears of joy because this young man’s story demonstrated that the human spirit is unquenchable? Or tears of sorrow that his life, and so many other young lives, have been wasted because society was unable to see beyond physical and mental differences?

In my view, Public Law 94-142 stands as a monument to what is best in our society, our impulse to improve the lives of the least fortunate among us.  We’ve messed it up, of course, by failing to help regular classroom teachers, by rushing into ‘mainstreaming,’ by being too quick to label some kids–especially the poor and minorities, and by allowing some lawyers to exploit the system to get certain students placed in expensive private schools at public expense.

Despite the errors and omissions, however, PL 94-142 and its successors have improved the lives of millions of special needs children and, at the same time, broadened the horizons of children (like my son) fortunate to be ‘temporarily able-bodied,’ as the advocates used to say.

—-

[[1]]1. Back in 1975, the word ‘handicapped’ was not politically incorrect.  Or perhaps those pushing for the legislation, like the Council for Exceptional Children, did not want to waste any energy fighting about words.  Later on ‘handicapped’ would be replaced by words and phrases like ‘special needs,’ ‘disabilities,’ and ‘exceptionalities.’[[1]]

[[2]]2. The vote in the Senate was 83-10. The House tally apparently was not recorded, but the margin was overwhelming and veto-proof.   Here’s the US Department of Education’s page about the law: https://www2.ed.gov/about/offices/list/osers/idea35/history/index_pg10.html [[2]]

[[3]]3. The law specified that no more than 12% of a student population could be labeled handicapped, a provision added because some feared schools would label excessively just to get the federal dollars.[[3]]

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17 thoughts on “Looking Back (Part 3)

  1. Thank you for sharing this. beautiful piece.

    Is there still a cap on the percentage of the student population that can be labeled “handicapped”? Given the high incidence of children diagnosed with ADD/ADHD, I am curious about the details of that component of the law.

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      • An expert in these matters tells me that the current law, IDEA, does not have a cap on the percentage of kids who can be identified and labeled.

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      • There is however a potlically acceptable cap, and a reasonable case has been made locally (in South Bend, IN) that the designation has been made too freely upon disadvantaged kids (especially of color) to attract funding the state of Indiana has failed to provide. I fear that many of those most indignant about this will find their children may suffer in new ways. It’s very complicated.

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      • We would do well to emulate what I understand is the Finnish way: shower a child with services at the first sign of serious trouble. Make him/her ‘special needs’ but only temporarily. It’s a kind of preventative maintenance that makes sense to me, but, unfortunately, label forever, not temporarily.

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  2. Dear John:

    I once asked my former boss, the late Rep and Sen Paul Simon, what act was he most proud of authoring/coauthoring.

    His answer was PL 94-142. He said this was based upon his experience in a state legislature: that when the handicapped kids lobby goes up against the highway lobby, we know who’s going to win…

    Go enjoy that drink, proud poppa.

    Steve Katsinas
    The University of Alabama

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  3. In 1964 i spent three months working at Dixon State School for the Mentally Retarded, in Dixon Illinois, as part of Antioch College’s work study program. I experienced on a daily basis the kinds of situations you describe. The lucky children who were considered ‘capable’ participated in art classes where I was employed as an assistant. Among those children were a good number who were there because their parents had deserted them as a result of their physical disabilities, but whose mental facilities were at least average. It was heart breaking, but at least those children got to make art. The vast majority had no such ‘opportunity’ and were simply being warehoused in deplorable conditions. I still have artwork that children gave me–having no one else to give it to. I certainly hope such places no longer exist.

    In contrast, Mission Hill School in Boston, where we filmed in 2011-12 is a full inclusion school where children with many kinds of ‘differences’ are integrated into classrooms, and treated with respect. Parents of ‘average’ children told us how much they appreciated seeing what their kids got out of interacting with this greater range of ‘being in the world.’

    You are right though that to do this well teachers need small class sizes, training and support to help guide their interactions and that of their students, and labeling should be replaced with caring.

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  4. One of the more poignant of your posts. As the mother of a young adult with disabilities, I appreciate the efforts those before us have made to push these laws. One of those in the trenches was Fred Weintraub, who, in spite of being retired had been appointed to serve as the Independent Monitor overseeing progress on the Los Angeles Unified School District Modified Consent Decree. We lost him just earlier this year: http://www.legacy.com/obituaries/latimes/obituary.aspx?pid=171061302

    As an 18 year member of the LAUSD Special Education Community Advisory Committee (10 serving on their board – 2 terms as chair), I’ve had numerous opportunities to interact with him. He was a true advocate for our children and we will miss his gentle heart and compassionate understanding our the issues we face as parents on a daily basis.

    While the public education situation has improved since the law first went into effect, we families are still fighting for the basics. Many families do not know their rights and, unfortunately there are personnel/administrators who take advantage of this lack of knowledge. The advisory committees are required by law to give families a place to voice concerns, learn how to be better advocates for their children and to give input to their school districts about special education services. There a pitifully few resources provided for us to fulfill our mandated duties, though.

    IDEA has NEVER been fully funded, NEVER. School districts must constantly borrow from the general fund (with LAUSD it has been up to 50% of costs in some years) to provide the legally required services of an Individual Education Plan (IEP). We don’t have PACs, lobbyists or big corporate backers to help with creating awareness of our difficulties to state and federal legislators. Much of our story is “stolen” by charter interests who manipulate data to appear as though they are doing a great job, when they are funneling public funds away from regular schools, yet not taking all children. I don’t know how many times I’ve gone to Sacramento to advocate and have found our leaders ignorant of special education issues and surprised that we are so woefully underfunded.

    LAUSD has become very adept at “writing” good IEPs. Appearing compliant on paper to ensure continued state and federal funding; there is still a deep disconnect between the written plan and the actual implementation. Getting the service delivered to the child can be difficult to impossible at times. LAUSD has a superintendent who does not value our children and has been starving the Division of Special Education to the point of near inability to function.

    At least we have the law. I’m an advocate for families of students with disabilities and this last school year was the first where every family I helped had to go to due process because the school would either refuse to provide a service that had been available in the past or (in one case at a Magnet school) not only disputed the disability of a student, but did not know how to write goals for the transition plan in the body of the IEP claiming she just had a training and “they didn’t tell her she had to do that”. If families don’t know the process, they don’t know when personnel aren’t following proper procedures.

    Unfortunately, an IEP is still a kabuki dance of knowing what to ask for because it will not be offered in the best interest of the child. We still have much work to do.

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    • Forgive typos I only noticed after posting – my young adult with disabilities kept coming in to tell me funny stories he’d heard…

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    • Sonja,
      I had not known about Fred’s passing. He was really the principal author of PL 94-142, which he crafted when he was the leader of the Council of Exceptional Children. I interviewed him a number of times for my radio series. I think it may have been Fred who told me–years later–a great story about how the ‘bones’ of what became the law were sketched out on a napkin over dinner somewhere in Washington.
      The law has flaws, its implementation still more, but no one would wish to go back to the days before 94-142.
      Keep fighting…and thanks for writing

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  5. What a tremendous life experience! Thank you so much for sharing. I was immediately reminded of my time spent volunteering at the Virginia Home where I taught songwriting to people with severe physical and mental disabilities. I have a collection of the songs they wrote, and the love that Bill so freely gave you was the same kind of unconditional affection I received from so many people during my time there. It moved me to tears on several occasions, and strengthened my character in ways that I continue to discover today.

    It in no small way enabled me, as a journalist with The Darien Times newspaper, to help parents in Connecticut uncover the systemic failure of a wealthy school district to obey the IDEA. But the issue, as I’ve come to understand it, is deeper than concerns over legal compliance.

    It’s a civil rights problem. One could argue that disability rights is the most pressing civil rights struggle of the modern era. It’s especially disturbing if one considers that 90% of children with an IEP have no cognitive disabilities; their brains works fine, they simply learn differently. And many of these children have average to above average intelligence, yet we’re failing a large portion of them. While things have gotten better over time, some continue to end up as wards of the state, or in prison, because of our failure to implement the IDEA with fidelity.

    For me, it’s our inability as a society to take the long view. Our short-sightedness infects every aspect of governance, but when it comes to children, this flawed thinking has tremendous implications. How can we build a better future if we continue to deny fundamental civil rights to our most vulnerable — and often quite gifted — children?

    As you pointed out in the comments, the Finnish way is to shower children with services at the first sign of a problem, because spending a little more now often prevents spending a lot later. But that mentality seems to elude the American system. I have my theories on why, but that would take pages to dive into!

    To end positively, I am grateful for the trailblazers such as Fred Weintraub, Janet Taggart, Katie Dolan, Cecile Lindquist and Evelyn Chapman, and everyone else who pushed for the passing of PL 94-142 nearly 40 years ago. I’m also grateful for those journalists who see what works and what doesn’t in education, and work to inform people about matters that affect their lives. I’m hopeful that things are getting better, but that won’t happen without consistent and persistent help from a variety of sources.

    Thanks again, John, for sharing!

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  6. As a younger teacher it really is great to learn about the history of this law. I’ve only known that I have to follow IEPs, that special education students are expensive (many cost between $20,000-$40,000 per year according to our fiscal services person), and that special education is probably the most highly litigated issue in my district. Despite the costs and conflict, this is an example of what is best about our society. I get discouraged in the ed reform fights when these students get forgotten or marginalized as it seems to be happening in New Orleans now.

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  7. IDEA as the current version is known has always been the giant unfunded mandate in public education.

    Sorry I am coming to this late, but I had occasion to do some research on this both as part of my MAT training at Hopkins in the mid 1990s, then while advising a Senatorial candidate (Jim Webb) in 2006, and then looking at what was happening in education in the early years of the Obama administration.

    The original federal commitment was supposed to be 40% of the average additional costs imposed by federal law, which in effect established legislatively a federal civil right to education in the least restrictive environment.

    The only time we have come close to that is effectively reaching that commitment (around 39%) during the two years of the American Reinvestment and Recovery Act (ARRA, commonly known as the stimulus).

    Otherwise historically the federal government provided less than 15% of the additional costs imposed by the act.

    When I was doing research for Webb’s campaign, I was able to get the numbers for Virginia. in FY 2005, at the then 15% federal reimbursement rate, the shortfall in Virginia on the federal share was about $350 million, if I recall correctly.

    But providing the services was legally required.

    That left states and more importantly local education authorities only three options

    1. Raise taxes to cover the additional cost. Never popular, and in some cases prohibited by initiatives
    2. Shift funds from general education, which of course irritates parents of non-identified children.
    3. Ignore the law and hope you get away with not providing the services.

    Option 3 was most common in more rural areas, because in metropolitan areas we saw the development of a legal practice specializing in suing schools and districts for failure to provide the LRE required by the law, and this was true whether the schools in question served middle class kids or poor kids.

    In fact, one reason the District of Columbia had such high per pupil expenditures was special education costs – in fact the District often got stuck with busing kids to specialized facilities outside the city because the schools did not have the capability of providing the services required.

    Here I think it worthwhile to note how poverty contributes to this problem. I came out of retirement briefly in November 2012 to fill in at a inner city charter middle school at the request of my first principal. It was the hardest but also the most fulfilling work I ever did, and I only left because my wife was diagnosed with a cancer that required me to be her full time caregiver for a while (she is now in remission and back working fulltime). We saw lots of kids who presented as ADD, ADHD, and emotionally disturbed. All were from Wards 7 & 8. And the real cause of the problems for most of them was having ingested lead-based paint. Much of the housing stock of DC was in private hands and had never been remediated. At best in some cases the older paint was simply painted over with a single coat, which when it peeled gave access to the lead-based paint flakes.

    That is a subject you might want to explore, John. And if you do, I strongly urge you to talk to Mike Martin of the Arizona School Board Association, who has been raising the alarm about lead-based paint for years.

    I agree that the law did make things much better. But unfortunately it did not go far enough, and not merely because of the separate problem on appropriations.

    I am enjoying your reflections, John. We are both of an age where we look back, and sometimes we can be surprised at how good some of our work has been.

    Peace.

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