Our Ideals: At What Cost?

It’s a noble idea to do whatever it takes to bring out the best in every child. Even nobler is the determination to go the extra mile for children with disabilities. But while those ideals successfully pushed through legislation requiring schools to provide testing and special education for youngsters with such needs, they were less successful in funding those requirements.

The Individuals with Disabilities Education Act (IDEA), passed in 1975, is still waiting for full funding.

A January 8, 2019 article in Education Week outlines this failure in stark detail:

Congress never funded the IDEA for the full amount that was authorized when the law was first signed. At that time, Congress estimated that it cost states twice as much to educate a student with disabilities as it does to educate a general education student, and the law authorizes the federal government to give up to 40 percent of that excess cost to states.

Congress has never come close to that mark; its $12.3 billion contribution in fiscal 2018 is more like 15 percent of the excess cost.

An additional $85 billion would be required — per year — for the taxpayers to provide full funding for its 40% of the cost. And that says nothing about the 60% of the cost required from the states. When facing a total cost of over a quarter trillion dollars per year for special education, it’s no wonder legislators have shied away from mandating adequate funding.

In poorer states like Arkansas, there’s no doubt that this is an unachievable goal. As noted in my January 2019 blog post, The Undiscovered Cost of Inclusion, in many cases, special needs students are placed into regular classrooms without the support they need, leaving teachers and general education students to bear the sometimes outrageous burden posed by special needs students.

For example, schools simply do not have the money to hire a caretaker for every profoundly intellectually disabled (ID) child or tutors who might be able to make some small improvement in the life of an ID child. The end result is that, under force of law, schools must accept these children or risk being sued by distraught parents.

Few dare draw back the curtain on the real story resulting from the ADA and IDEA. It’s not just the finances, which haven’t even been calculated in over twenty years. Assessment is performed unevenly often with minority students on the losing end. Not only is funding inadequate, but distributed as unevenly as the assessments.

A 2014 report by New America, a Washington-based think tank, asserted that the out-of-date, complicated formula that the federal government uses to distribute money to states has resulted in small districts getting more federal money per student than larger districts, and shrinking school systems receiving more federal dollars than school districts that are growing.

No one has calculated present-day costs to teach an ID student, or assessed the impact of increasing numbers of autistic children. No one has figured out how to prepare classroom teachers for the increasingly common occurrence of disabled children in their classes without the caretakers they need.

Should all teachers be required to be trained in special education? Who changes the diapers? What happens to the rest of the students when teachers are forced to spend class time with special needs students?

How much is such well-intentioned legislation misleading parents into holding unreasonable expectations for their child with serious disabilities, that he or she can lead a “normal” life?

This Education Week article should be required reading for every American. We’ve placed the burden of educating special needs children on our school systems without providing adequate funding. All our children are paying the price. Not only the children, but the teachers who are underpaid in normal circumstances, and highly underpaid as well as undertrained for the task of providing proper services to disabled children.

At the very least, it is past time for studies and legislation — with adequate funding — that will reflect the current reality of special education—how many students and how impaired, the actual costs of educating them to the greatest extent possible, and which address the collateral necessity of educating general education students in a manner that advances our society.

 

Forced Birth

This week the Arkansas legislature has exceeded its standards for ignorance and arrogance with Senate Bill 2, which outlaws abortion in cases where the fetus is genetically impaired with Down syndrome. The text of the bill, https://legiscan.com/AR/text/SB2/id/1959872/Arkansas-2019-SB2-Draft.pdf, specifies felony charges against any physician who performs an abortion for a woman with a Down syndrome fetus.

Let that sink in. A woman cannot terminate a genetically impaired fetus. She cannot save herself or her family or their future from the staggering workload of caring for someone with an IQ of 50, who in 80% of cases can never live independently or work to support his or herself, who will be subject to serious medical issues such as  congenital heart defectepilepsyleukemiathyroid diseases, and mental disorders. About half will suffer severe sleep apnea, throat infections, chronic constipation, and high rates of various cancers, to name but a few.

This is yet another play by the Forced Birth movement, not content to let women and couples decide when and how to put their unique sets of DNA into the world.

Who pays for this? Well, even though Arkansas has so far removed over 15,000 people from its Medicaid services for failing to report work hours, anyone born with Down syndrome is automatically qualified for Medicaid. For life.

Between medical costs and the sheer physical and emotional effort involved in raising a Down syndrome child, the state is seriously overstepping its moral authority to force this on anyone.

Also not mentioned in the discussion of this issue coming before the House next week is the very real problem of further contaminating the human genome, already under assault from chemical pollution that reduces sperm count and increases birth defects. According to Wikipedia, “Males with Down syndrome usually do not father children, while females have lower rates of fertility relative to those who are unaffected. Fertility is estimated to be present in 30–50% of females. …Around half of the children of someone with Down syndrome will also have the syndrome.”

No one is forcing women to abort a genetically impaired fetus. If a woman chooses to keep such a pregnancy and enter into the lifelong commitment of caring for the impaired child, that is her rightful choice. The state should leave it at that.

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The Undiscovered Cost of Inclusion

The mythology of bad teachers empowered by entrenched unions is only one part of a national disaster that has crept up on us over recent decades with the passage of the American with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Meant to provide legal protections for the disabled, the side effects of these laws has been to undercut funding and appropriate learning environments for normal children.

By stating this fact, I am risking a rain of fire from incensed parents of disabled children. These parents have been a primary inciting force of these laws, alongside adults with disabilities, and have ensured federal and state tax dollars will flow into programs that aid the disabled.

Section 504 of the Rehabilitation Act of 1973 … assures certain protections to certain students with disabilities. §504 states that:

“No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance . . . .”. 29 U.S.C. 794(a).[1]

One result of these laws has been the “mainstreaming” of students with disabilities into American public school classrooms. IDEA mandates that students with disabilities receive a “Free and Appropriate Education in the Least Restrictive Environment.”[2]  Previously, students with disabilities with conditions such as autism, developmental delay, emotional/behavior disturbance, intellectual disability, orthopedic impairment, learning disability, learning disabilities and speech and language impairment may have been placed in special schools where teachers with specialized training could focus directly on their special needs.

Mainstreaming works for many types of disabled students but does not work so well for many others. School districts face lawsuits from distraught parents if their disabled child is perceived not to be treated “equally” with other students. There’s also a cost factor, with estimates upwards to $100,000 per year per student for a special needs environment, according to one article detailing a situation in Georgia.[3] The risk of lawsuits and soaring costs for special needs education causes school districts to place disabled students into classrooms with “normal” children.

A veteran educator dealing with special needs students for over 30 years in a major metropolitan school district cited one example of the outcome of such policies.

“One of the things we tried was to put her in an art class. She sat there the entire hour voicing this loud moaning cry.” He imitated the sound. “I don’t know how anyone expected her to learn anything. She functioned at the intellectual level of a six-month-old infant.”

What this educator could not quantify was the effect of this person’s behavior on the rest of the class over the eight years this student remained in this secondary level school. Did anyone else learn anything in that art class or was this a wasted hour in their day, an hour when they might have learned how to draw perspective, or blend complimentary colors if not for the loud cries steadily emanating from the severely disabled person in their midst?

What’s been lost in our urge to help those with special needs is the primary mandate of our schools—to educate the next generation of scientists, artists, technicians, educators, workers, and leaders for our nation. The commendable stated objective of the ADA, to make it possible for everyone with a disability to live a life of freedom and equality, is deceptively simple and ignores the reality: people with many types of disability will NEVER be able to live a life of freedom and equality.

This is not something many parents of such children are willing to accept. Many of them believe if their child mingles with regular kids and attends the same classes, they will graduate high school and go on to college. It’s a heartbreaking situation.

In our public policy pursuit of this fantasy, we’re continuing to overlook the collateral damage. Consider one experience of an elementary teacher in a private Christian school in a small Midwestern state. At the start of the 2018 school year, a new student was introduced to her class. Neither parents nor administrators introduced the child to the teacher or explained her needs. Instead, the teacher soon discovered that she would be expected to change the child’s diapers, spoon feed her, and deal with increasingly loud, belligerent, and violent behavior. The teacher’s aide, meant to assist in teaching a class of over 30 young squirmy children, was forced to devote her entire schedule to managing the disabled girl.

“Finally, at the end of the semester,” the teacher remarked, “my documented chronology of abuses by this student forced the administration to contact the parents and the student was removed from the school. I feel like I’ve lost an entire semester with the rest of these kids.”

The decision by a private school to accept ID kids is often a financial one—the school needs the tuition money. Private schools are not under the same federal mandate to mainstream kids with disabilities because they don’t rely on public funding. This helps explain the push to channel tax dollars to private schools and may in part have to do with maintaining the freedom to deny admission to severely disabled students.

Not all disabilities lead to chaos in the classroom. Young people with physical disabilities may require specific desk heights and schools free of stairs, but they can still participate in the learning process alongside non-disabled students. It’s the intellectually disabled who pose the greatest challenge in mainstreaming.

Intellectual Disability (ID), formerly known as mental retardation, is an ongoing and perhaps increasing condition in the U.S.[4]  Criteria for ID include an IQ under 70 in addition to deficits in two or more adaptive behaviors that affect everyday, general living although many variables move the determination up or down these markers. Conditions meeting this definition include Down syndrome and fragile X syndrome.

Intellectual disability affects about 2–3% of the general population. Seventy-five to ninety percent of the affected people have mild intellectual disability. Non-syndromic or idiopathic cases account for 30–50% of cases [An idiopathic disease is any disease with an unknown cause or mechanism of apparent spontaneous origin.] About a quarter of cases are caused by a genetic disorder, and about 5% of cases are inherited from a person’s parents. Cases of unknown cause affect about 95 million people as of 2013.[5]

Benefits of mainstreaming for both normal students and disabled students include exposure to diversity. But the majority of benefits are exclusive to the disabled: learning socialization skills, exposure to higher functioning children, and the challenge of competition. This says nothing about any benefit to normal children. As the 30-year veteran put it, “Here we’re spending big chunks of our limited budgets to provide an aide to accompany an ID student all day while spending nothing to assist or promote a kid with 140 IQ.”

The loss to our future society is incalculable.

Of equal concern is the inevitable observation by ID students who compare themselves to the social lives and interactions of normal students. ABC’s ongoing (2015 to present) television program “Born This Way” portrays one aspect of this effect by showcasing high functioning Downs syndrome children who aspire to marriage, stardom, and independent living. Many of the stars of this program are closely assisted by their mothers, leaving a question about what they’ve actually accomplished on their own. At times the program seems exploitative, showcasing anomalous humans for entertainment purposes. Encouraging their expectations for a normal life may ultimately prove cruel.

Before dumping severely disabled children into classrooms with normal students, schools need to ensure that teachers are prepared for the challenge. Many of them are not. Teacher education does not include techniques for changing diapers on physically mature ‘students.’

An estimated 1.8 million of the U.S. population are considered severely disabled, yet many of the disabled youth have parents who struggle to ensure their child’s future is as close to normal as possible. What parent wouldn’t?  Yet as observed by one special educator,

“… research also shows that students with disabilities, whether mild or severe, often have poorer social skills and are less accepted by their non-disabled peers. So we have to ask ourselves—who are we really thinking of when we talk about inclusion? Are we thinking of the student with a mild learning disability who may easily blend in and be accepted by their abled peers, or the student with cerebral palsy who uses a wheelchair and must be fed by a feeding tube, who just may stick out in a mainstream crowd? Speaking from experience, I’ve seen that the best communication skills, motor skills, and social skills are developed when students work alongside peers who are like themselves—peers who share their struggles, who know what it feels like to make huge gains in small steps.”[6]

It’s time to take a fresh look at the ADA and IDEA legislation and come to a new understanding based not only on what parents of disabled children dream for their child but also what is best for the rest of our children and the nation as a whole. The cost burden to schools is enormous. Specially trained aides are required to accompany disabled children through the day, to feed them, change diapers, and physically contain them. School budgets have not increased commensurate to the added expense of adequate staffing for meeting the needs of disabled children, and yet the nation wonders why classroom teachers are buying school supplies out of their own pockets.

Aside from the tremendous cost to taxpayers,[7] there is no real assessment of the cost to teachers, normal students, or society as a whole for these well-intended policies, but it surely is great. Many teachers are leaving the field with its low pay and unexpected demands. Yes, there are lousy teachers out there just as all levels of competence exist in any profession. This isn’t a problem of unions or incompetence—it’s a problem of well-intentioned public policy failing to take the big picture into consideration.

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[1] See https://en.wikipedia.org/wiki/Individuals_with_Disabilities_Education_Act#Individualized_Family_Service_Plan_(IFSP) for more details about these laws

[2] https://www.eparent.com/education/mainstreaming-the-education-of-children-with-disabilities-the-teachers-perspective/

[3] https://www.theclassroom.com/the-cost-of-mainstreaming-vs-special-education-classes-12067245.html

[4] Multiple studies show a direct link between pollution and intellectual disabilities. See, for example, http://www.sci-news.com/medicine/link-air-pollution-intellectual-disabilities-06637.html

[5] https://en.wikipedia.org/wiki/Intellectual_disability

[6] Smith N. Takepart. Op-Ed: An argument against mainstreaming kids with disabilities. A special education teacher shares why she believes students with special needs thrive in schools solely for kids with disabilities. https://www.scoop.it/t/issues-in-special-education

[7] Approximately fifty percent of the current Medicaid budget pays out to children with disabilities. See https://www.kff.org/medicaid/issue-brief/medicaids-role-for-children-with-special-health-care-needs-a-look-at-eligibility-services-and-spending/

Medicaid and the Chemical Industry

Figure 4: Medicaid is the third largest domestic program in the federal budget.

As of 2002, the majority of Medicaid beneficiaries (54%) were children under the age of six years. Contrary to the popular myth of aging slackers, drug addicts, and welfare queens sucking at the national teat, this majority of Medicaid provides healthcare to children and adolescents with limitation of activity due to chronic health conditions. Their numbers quadrupled from two percent in 1960 to over eight percent in 2012.[1],[2]

This increase parallels the growth in manufacture and use of agricultural chemicals.

One of the fastest growing patient groups covered by Medicaid is children with developmental disabilities. Over the last 12 years, the prevalence of developmental disabilities (DDs) has increased 17.1%—that’s about 1.8 million more children with DDs in 2006–2008 compared to a decade earlier: autism increased 289.5% and ADHD increased 33.0%.

According to a recently released study, children with special health care needs suffer conditions that include

autism, Down syndrome, and other intellectual and developmental disabilities (I/DD); physical disabilities such as cerebral palsy, spina bifida, and muscular dystrophy; mental health needs such as depression and anxiety; and complications arising from premature birth. They may need nursing care to live safely at home with a tracheotomy or feeding tube; attendant care to develop community living skills; medical equipment and supplies; mental health counseling; and/or regular therapies to address developmental delays.[3]

One source puts the annual cost of caring for a child with severe autism at $72,000.

What is happening?

Consider the case of Eva Galindos, a twelve-year-old girl with autism. At age three, she was diagnosed by her pediatrician, but he could not answer the parents’ urgent questions about why this happened to their child. Seeking answers, the Galindos family participated in a study. At the time of Magda Galindos’ pregnancy with Eva, “the family was living in Salida, a small town in central California surrounded by fields of almonds, corn, and peaches. The Galindos could see the planted fields just down the street from their stucco house.” Magda recalled the acrid smell of chemicals sprayed on the fields, very different from the fertilizer odor.

The study revealed that during pregnancy, Magda had been exposed to chlorpyrifos.

In 2014, the first and most comprehensive look at the environmental causes of autism and developmental delay, known as the CHARGE study, found that the nearby application of agricultural pesticides greatly increases the risk of autism.[4] Women who lived less than a mile from fields where chlorpyrifos was sprayed during their second trimesters of pregnancy, as Magda did, had their chances of giving birth to an autistic child more than triple. And it was just one of dozens of recent studies that have linked even small amounts of fetal chlorpyrifos exposure to neurodevelopmental problems, including ADHD, intelligence deficits, and learning difficulties.[5]

The American use of chemicals to eradicate insects both in homes and crops dates back to lead arsenate in 1892, but as early as 900 AD, poisonous arsenic sulfides were used in China.

The search for a substitute [to lead arsenate] commenced in 1919, when it was found that its residues remain in the products despite washing their surfaces. Alternatives were found to be less effective or more toxic to plants and animals, until 1947 when DDT was found. The use of lead arsenate in the US continued until the mid-1960s. It was officially banned as an insecticide on August 1, 1988.[6]

Total global pesticide production and global pesticide imports (1940s-2000) – Tillman et al. (2002)0

DDT (Dichlorodiphenyltrichloroethane) quickly took the place of lead arsenate, even though research as early the 1940s had shown its harmful effects. After Rachel Carson’s expose Silent Spring pointed the finger at DDT for poisoning wildlife and the environment and endangering public health, the chemical was targeted by a growing anti-chemical movement. In 1967, a group of scientists and lawyers founded the Environmental Defense Fund with the specific goal of banning DDT. Despite continuing efforts, DDT is still produced for ‘vector control’ and for agricultural purposes in India, North Korea, and possibly other locations. At least three to four thousand tons of the chemical is produced annually.

Like many chemicals, DDT persists in the environment as well as in tissue of all life forms. Its biological half-life in soil is up to thirty years. Organisms at the top of the food chain suffer greater exposure as the chemical and its major metabolites of DDE and DDD accumulate in animals and plants which are then consumed by other animals.[7] Among its effects, DDT is an endocrine disruptor which can cause cancerous tumors, birth defects, and other developmental disorders.

Specifically, “endocrine disruptors may be associated with the development of learning disabilities, severe attention deficit disorder, cognitive and brain development problems; deformations of the body (including limbs); breast cancer, prostate cancer, thyroid and other cancers; sexual development problems such as feminizing of males or masculinizing effects on females, etc.”[8]

With the ban on DDT, farmers and other chemical consumers turned to chlorpyrifos.

Estimated worldwide annual sales of pesticides 1960 to 1999 in billions of dollars (Herbicides, Insecticides, Fungicides, and others) – Agrios (2005)0Despite the overwhelming evidence that chemicals lead to ever-increasing negative health effects, chemical companies are willing to spend whatever it takes to discredit the evidence in efforts to delay any meaningful regulation of those chemicals. In a lengthy article published January 14, 2017, in The Intercept, an online newsletter, author Sharon Lerner details the efforts of Dow Chemical to protect its lucrative products from EPA regulation.[9] It’s a staggering indictment not only of Dow’s strong-arm tactics but also of the willingness of legislators and government agencies to ignore their duties to American citizens.

Exposure to chemicals which are wreaking havoc on the nation’s children is suffered disproportionately by the poor. Agricultural workers live near fields where chemical sprays drift in through open windows. Inner-city poor live in housing that is routinely sprayed with pesticides despite the presence of children and pregnant women. Long-term exposure plus ingesting food laden with pesticides means that while autism rates among children across the U. S. population is one in 68, for women in poor neighborhoods or near commercial agriculture, the rate of impaired children is one in 21.

Parents such as Magda Galindos can’t afford to move away from the fields where chemicals are sprayed. She also can’t afford to buy organic food, which is often twice as expensive. Her household income and the medical needs of her daughter Eva qualify for state and federal assistance.

Which brings us back to Medicaid.

Figure 1: Type of health insurance among children with special health care needs

Despite compelling and well-documented scientific studies showing the strong link between certain chemicals and a slate of neurodevelopmental disabilities including autism, the EPA has for decades postponed any meaningful action to more strictly regulate (or ban) the culprits. In a recent publication, scientists stated:[10]

In 2006, we did a systematic review and identified five industrial chemicals as developmental neurotoxicants: lead, methylmercury, polychlorinated biphenyls, arsenic, and toluene. Since 2006, epidemiological studies have documented six additional developmental neurotoxicants—manganese, fluoride, chlorpyrifos, dichlorodiphenyltrichloroethane, tetrachloroethylene, and the polybrominated diphenyl ethers. We postulate that even more neurotoxicants remain undiscovered.

This is the tip of a massive iceberg. As reported in a 2016 PBS report on “Science Friday,”

There are more than 80,000 chemicals registered for use today, many of which haven’t been studied for safety by any government agency. But that’s about to change…somewhat. President Obama today signed into law the Frank R. Lautenberg Chemical Safety for the 21st Century Act, named after the late senator who introduced a version of the bill in 2013. This marks the first overhaul in 40 years to the Toxic Substances Control Act of 1976, the nation’s main law governing toxic chemicals.

Absurdly, the law only requires the EPA to test twenty chemicals at a time and each one has a seven-year test deadline before a five-year period during which industry is supposed to comply with any new regulation. At that rate, it will take over a century for all the current chemicals to be tested, all while about 20,000 new chemicals hit the market each year.

New EPA head Scott Pruitt, who voted for the Lautenberg bill, has stated that the law “guarantees protection of the most vulnerable by placing emphasis on the effects of exposure to chemicals on infants, children, pregnant women, workers and the elderly.”[11]

This should be a hopeful note, but even in a best-case scenario where President Trump’s EPA enacts swift meaningful restrictions on chlorpyrifos and other chemicals saturating our soil, air, and waterways, the incidence of fetal exposure and the resultant impairment of so many of our nation’s young will not abate any time soon. These chemicals wash down our rivers and linger in oceans where we harvest seafood. They soak into the walls and floors of our homes, survive in cropland that produces our fruits and vegetables, and become even more concentrated in livestock feeding on those plants.

Since developmentally disabled children form over half the nation’s Medicaid caseload at an estimated cost of about $300 billion (2015), legislators looking to reduce Medicaid expenditures should turn first to the nation’s agrochemical industries. In 2015, for example, Dow AgroSciences reported a full year profit of $962 million. In 2016, even after some losses, the company still enjoyed an $859 million profit.  Monsanto and DuPont reported similar numbers.

Why not impose a 50% tax on such profits? This would yield a modest $1.5 billion toward the Medicaid costs resulting (in part) from their products and serve as a powerful incentive to ensure such products are safe before they’re marketed.

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[1] https://www.nap.edu/read/10537/chapter/4#50

[2] http://www.deseretnews.com/article/865609389/10-common-disabilities-American-children-have.html

[3] http://kff.org/medicaid/issue-brief/medicaid-and-children-with-special-health-care-needs/

[4] https://ehp.niehs.nih.gov/wp-content/uploads/122/10/ehp.1307044.alt.pdf

[5] https://theintercept.com/2017/01/14/dow-chemical-wants-farmers-to-keep-using-a-pesticide-linked-to-autism-and-adhd/

[6] https://en.wikipedia.org/wiki/Lead_hydrogen_arsenate

[7] https://en.wikipedia.org/wiki/Dichlorodiphenyltrichloroethane

[8] https://en.wikipedia.org/wiki/Endocrine_disruptor

[9] See Footnote 5 above

[10] http://thelancet.com/journals/laneur/article/PIIS1474-4422(13)70278-3/abstract

[11] https://www.bna.com/trumps-pick-lead-n73014449061/