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.

~~~

[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/

40 thoughts on “The Undiscovered Cost of Inclusion

  1. I agree with you completely! I have been unable/unwilling to make similar observations and comments because I risk the wrath of friends and coworkers who tote the line and insist that inclusion is best for all students. It certainly isn’t best for the majority of the students who have to move along more slowly because of the time and effort taken to pretend that the teacher isn’t having to put forth more time and energy on corralling the few.

  2. The point at hand is not about engaging on a “battle” of accurate and relevant data. You are missing the point. You present a number of documented facts, anecdotal evidence and opinions to draw your own personal conclusions and opinions. I don’t have to disagree and refute any of those facts, anecdotes and opinions to form a different opinion of my own. It is a sad fact that parents of typical and non-typical students are being pinned against each other to fight for precious dollars. I think your post falls into that trap. You picked a corner and stepped into the ring. I wish a person your your ability for research and communication could find ways to tear the ring and bring parents on both sides together for the benefit of ALL children

    • I’ve always supported better funding for education. I chose to start a blog that reflected my views and support those articles with citations of sources. You are welcome to create your own blog and present whatever facts you think are important. This kind of debate is the only way to air all sides of any issue because people see things differently. I’m certainly not going to present “documented facts, anecdotal evidence and opinions” that don’t reflect my views.

  3. “Before dumping severely disabled children into classrooms with normal students, schools need to ensure that teachers are prepared for the challenge.”

    I couldn’t agree with you more. NO CHILD should ever be dumped anywhere. The “one experience of an elementary teacher in a private Christian school” example you give as proof of your premise reveals this clearly. The teacher was not prepared. Sufficient supports were not provided for the child with disabilities. The construct was doomed to fail.

    Anecdotes are nice, but not adequate for determining far-reaching policy. Instead, I suggest you focus on the rigorous scientific studies that show inclusion not only improves educational outcomes for youth with disabilities, it encourages values in typically developing peers such as compassion, patience and service. Here are some examples:

    Ruijs, N., & Peetsma, T. (2009). Effects of inclusion on students with and without special educational needs reviewed. Educational Research Review, 4(2), 67-79. doi:10.1016/j.edurev.2009.02.002

    Baker, E. (1995). The Effects of Inclusion on Learning. Educational Leadership, 52(4), 33-35. Retrieved from https://eric.ed.gov/?id=EJ496165

    Evins, Allison E., “The Effects of Inclusion Classrooms on Students with and Without Developmental Disabilities: Teachers’ Perspectives on the Social, Emotional, and Behavioral Development of All Students in Inclusion Classrooms” (2015). Graduate School of Professional Psychology: Doctoral Papers and Masters Projects. 31. https://digitalcommons.du.edu/capstone_masters/31

    • Yes, Tracy, in a perfect world. But both in Arkansas, one of the poorest states, and California, one of the richest, school funding is insufficient. I doubt there’s a single state where education is so well funded that inclusion is adequately supported. This is just one area where schools squeeze their budgets by not supplying aides for students with developmental disabilities, not hiring well-trained teachers, placing disabled students in regular classrooms, and in a hundred other ways. Research is lovely, but has little actual relevance to classroom reality. Which is why many parents who can afford it send their kids to private schools, because those schools don’t have to accept developmentally disabled students. The federal mandate for mainstreaming only applies to federally funded schools.

      • The solution to underfunded schools is not to single out one type of student to receive less than others in order to save money. Children with disabilities have as much right to an education as any other student.

        Also don’t believe that parents send their child to private schools because there won’t be any disabled children there. Where is your proof?

        Research is more than lovely; it’s the best way we have to measure the success or failure of implemented programs and policies. The research I offered was based on teacher feedback and study of actual classroom realities.

  4. Re: ‘proof’ of parents sending kids to private schools to avoid disabled children, consider that one of the reasons private schools can offer a higher grade of education is that they don’t have to budget money for aides to work with each disabled child. It’s a money thing.

    Re: research — yes, I’ve talked with teachers and others who work with mainstreaming. I’ve also read lots of research that supports your point that it can be a useful program for all concerned. The reality is that it’s expensive. “A 2005 study conducted by the Special Education Expenditures Program (SEEP) showed that the price tag of educating a special-needs student is between $10,558 and $20,000. Educating without special education services costs $6,556, by comparison.” [https://education.cu-portland.edu/blog/classroom-resources/mainstreaming-special-education-in-the-classroom/] In some school systems, the cost is even higher.

    Re: as far as “singling out” any one type of student, please recognize that the fundamental purpose of tax-supported public schools is to prepare young people for a productive future as wage earners and voting citizens. The Founding Fathers supported public education because without informed citizens, the democracy will fail. By expanding the budget to provide “education” to mainstreamed DS or other intellectually-impaired youth who are largely unable to support themselves in the workplace or especially to function as an informed voting citizen, the funds available to educate other students is reduced, thus compromising the nation’s future.

    I realize this last statement is a red flag to some DS parents. That’s my opinion based on the facts and as a lifelong political activist in support of abortion rights, I feel it my duty to state my opinion. As women increasingly put off childbearing to later years, the risk of DS increases. Between 1979 and 2003, the number of babies born with Down syndrome increased by about 30%. Now with advances in social mainstreaming for DS persons, some are marrying, which means that the approximate 50% of DS females may have children which in turn have a 50% chance of producing another DS child. Among children aged 0-4 years with private insurance, average medical care costs were 12 times higher for children with Down syndrome compared to children of the same age without Down syndrome. [https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html]

    As far as wage earning is concerned, the only national data indicates that current labor force participation for people with disability in the United States is 20.3 percent. This statistic groups people with a disability as a single category; there is no separate category or date for people with Down syndrome or any other specific disability. A limited study of around 500 DS workers produced the following information: Fifty-three percent of the respondents were male and 47 percent were female. The majority of the respondents were currently working in some capacity: 57 percent were working a paid job, 26 were volunteers, almost three percent were self-employed, and 30 percent were unemployed. Of the respondents working in some capacity, only three percent were full-time, paid employees, and no volunteers worked more than 20 hours per week. Of those who answered the questions related to type of paid work experiences, the highest percentage of people worked in the following categories: 19 percent in restaurant/food services, 19 percent in office/clerical settings, 14 percent in cleaning/housekeeping/custodial services, 12 percent in grocery stores, and eight percent in workshop/warehouse settings. [https://www.nchpad.org/1415/6299/Employment~in~Adults~with~Down~Syndrome]

    Yes, mainstreaming introduces other students to those who might otherwise be shunned or bullied, and that’s an important social benefit. But unless we find a way to provide sufficient funds to provide proper support for mainstreamed students and still educate other students to the best possible future, we are compromising all young people and our country.

  5. Hello again Ms. Campbell. Your right, myself along with other parents do disagree with this. Your statement below, please correct me if I’m wrong, does it refer to the dreadful institutions I’ve researched where there were actually little to no education offered. Not to mention the neglect and abuse that occurred.

    “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.”

    Here is what I was able to find, underneath background.

    https://en.m.wikipedia.org/wiki/Individuals_with_Disabilities_Education_Act

    “Before the Education for All Handicapped Children Act was enacted in 1975, U.S. public schools accommodated 1 out of 5 children with disabilities.[3] Until that time, many states had laws that explicitly excluded children with certain types of disabilities from attending public school, including children who were blind, deaf, and children labeled “emotionally disturbed” or “mentally retarded.”[4] At the time the EHA was enacted, more than 1 million children in the U.S. had no access to the public school system.[4] Many of these children lived at state institutions where they received limited or no educational or rehabilitation services.[5] Another 3.5 million children attended school but were “warehoused” in segregated facilities and received little or no effective instruction.[4] As of 2006, more than 6 million children in the U.S. receive special education services through IDEA.[6]”

    Thank you,
    Crystal

  6. Copied from my original post. My question, your statement, and my reference to your statement go together. Please read below:

    Your statement below, please correct me if I’m wrong, does it refer to the dreadful institutions I’ve researched where there were actually little to no education offered? Not to mention the neglect and abuse that occurred.

    “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.”

    Here is what I was able to find, underneath background.

    https://en.m.wikipedia.org/wiki/Individuals_with_Disabilities_Education_Act

    “Before the Education for All Handicapped Children Act was enacted in 1975, U.S. public schools accommodated 1 out of 5 children with disabilities.[3] Until that time, many states had laws that explicitly excluded children with certain types of disabilities from attending public school, including children who were blind, deaf, and children labeled “emotionally disturbed” or “mentally retarded.”[4] At the time the EHA was enacted, more than 1 million children in the U.S. had no access to the public school system.[4] Many of these children lived at state institutions where they received limited or no educational or rehabilitation services.[5] Another 3.5 million children attended school but were “warehoused” in segregated facilities and received little or no effective instruction.[4] As of 2006, more than 6 million children in the U.S. receive special education services through IDEA.[6]”

    Just wondering if what I referenced above was the specialty schools you referred to in your statement?

    Thank you,
    Crystal

    Thank you,
    Crystal

  7. I tried to be clear, but I’ll try again. I have never advocated going backwards to a time when any sort of disability put youngsters in non-enriching institutions. My specific concern regarding intellectually disabled youth is that in our effort to provide them with nurturing experiences, we do not compromise the educational opportunities of other non-disabled youth. Currently, this is the dismal situation in most public schools. I assume you read the entire blog post and understand the examples I cited. Perhaps you could describe an appropriate setting in which to “educate” a twenty year old female with the IQ of a six month old.

  8. I read the entire post, but that particular statement jumped out at me. Did they have specialized schools other than institutions before the 1973 act and IDEA? I am glad you clarified you don’t support going backwards.

    “Perhaps you could describe an appropriate setting in which to “educate” a twenty year old female with the IQ of a six month old.”

    Patience and compassion, same as any child. Just like a six month old can respond to love, individuals with lower IQ’s can recognize the difference in how they are treated by others. My daughter does best when encouraged beforehand and applauded afterwards.

  9. There were probably specialized settings available before 1973 and IDEA, but then as now, such resources were only available to the wealthy. And while the changes since 1973 mandate “mainstreaming” as I discussed in my post, I hardly think that being parked in an art classroom or any other classroom serves the needs of an intellectually disabled child. Yes, if schools had plenty of money, they could pay for the aides required to attend to each ID, see that he/she was fed, cleaned after visiting the toilet, and otherwise attended. But that’s not the case, not only the instances I cited but also in countless other budget compromised school districts. Many ID kids are able to comprehend that activities going around them leave them out, or that they don’t understand what’s going on. What I don’t get is why parents would want to subject their impaired child to a situation that shames them, even if inadvertently. But I do understand the parental desire to believe their ID child can make something of life, and they want their child to have tools to fit in as much as possible. Hence the ongoing push for mainstreaming. But unless schools are properly funded to provide the kind of care really needed, it seems to me that mainstreaming does more harm than good, not only to the ID child but also to the rest of the students whose education is sidetracked.

    • Again, the question becomes solution(s) do you propose to teach and help children with severe and profound disabilities that would prepare them for when their families are no longer able to help with their care?

      • That’s a huge question that surely must haunt every parent of a child with any form of disability. But while physical disabilities are increasingly mitigated by modern medicine/technology, intellectual disabilities are a much tougher problem. Persons with profound intellectual disability will always require caretakers and financial support. I for one would never choose to knowingly give birth to a child who would suffer a life so utterly helpless and dependent.

      • Unfortunately Denele: 1) most of these disabilities are not made visible until after the child is born; 2) Current laws and regulations, promulgated by both the left and the right, punish and jail parents who do not take all life-saving measures to “save” sick and NIC-U babies. A large percentage of NIC-U babies become disabled children who grow into disabled adults. Again, I ask, what solution(s) do you propose? Given that in many states, once a severe or profoundly disabled person turns 18, the parents have no automatic legal obligation to care for that person.

  10. I think one place to start is prenatal testing that does identify DS fetuses as well as certain other conditions that signal a high probability of intellectual disability. In my opinion, doctors should be free to inform and advise parents of the risk of ID and also free to offer abortion for any pregnancy that involves such risks. Research should increase its investment in prenatal testing. Unfortunately, one of the movements currently underway is to pass laws banning abortion for women whose prenatal tests show Down syndrome and also pass laws that move the time frame where abortion is allowed down to a point when prenatal testing is not yet conclusive.

    But to your point, yes, plenty of ID babies are born without the parents/doctors having any clue to the problem, which eliminates abortion as the solution. Then we have the more serious problem of a severely intellectually disabled person who, for the most part, is born to parents not financially able to pay for necessary medical care much less the daily effort to provide a suitable lifestyle. At whatever point the parents are no longer in the picture, the ID person is utterly dependent on the government–our tax dollars–to survive.

    I don’t have the answer you seek. What do you think is the best path for this situation?

    • Denele, if one follows the progress of medical technology in terms of newborn and infant care, the rise in the number of severely and profoundly disabled children tracks closely with the drop in infant mortality. This demonstrates clearly that medical science, along with NSF and NIH had created a situation that defies natural selection (only the strong shall survive). Since the medical industry and national government created this problem, it is theirs to solve, cradle to grave. Conversely, if our citizenry naively believes that the taxpayers and the medical industry should not be held financially for this situation they created, then they must remove the criminal penalties on parents would who choose to allow their sick and disabled babies die. Anything less is intellectual bankruptcy. Unless, of course, you have a better idea.

  11. I fully agree the problem in large part is due to modern medicine/technology. Up to the mid-20th century, most of these severely ID babies would have died. I don’t agree with eugenics as a government policy of sterilization per se, but I do think parents and doctors must remain the people in charge of making life-death decisions at the point of birth. Our current laws requiring every and all life saving efforts for such newborns are inhumane, at the least.

  12. “What I don’t get is why parents would want to subject their impaired child to a situation that shames them, even if inadvertently.”

    Personally, I want my daughter to be in public school with her typical peers. If she failed to progress in that environment, I would then consider a specialty school. But to not have the option or opportunity simply based on her diagnosis and not her ability to process what she’s being taught is discrimination. This is of course a mother’s opinion.

    “I think one place to start is prenatal testing that does identify DS fetuses as well as certain other conditions that signal a high probability of intellectual disability.”

    “But to your point, yes, plenty of ID babies are born without the parents/doctors having any clue to the problem, which eliminates abortion as the solution.”

    The two statements above are to Shann. The first one about prenatal testing, I thought they already had tests available to show if the baby had Down syndrome? Although I have read testimonies of parents receiving a Down syndrome or other diagnosis that proved to be false when the baby was born. That leaves you to wonder how many babies lost their lives based on misdiagnoses.
    The second one Is a little hurtful to know the solution to my daughters diagnosis as it can be detected before birth, if parents agree to certain tests, is termination. This again is just a mother’s opinion.

    Thank you

  13. I think it is very important that discussions of public policy be carried out in a dispassionate, factual manner. I understand that emotion enters into the picture for persons closely involved in decisions on such volatile topics. But emotion cannot be allowed to rule public policy. Currently, we have a strong group of anti-abortion activists who want to enforce their emotional ideas on everyone else. This is mob rule.

    No one wants to get an abortion. No one wants to discover that their hoped-for child is at high risk of being born with intellectual disability. Those are situations where emotion can hijack a rational decision-making process. Other factors that must be considered include whether or not an ID child will force the mother to give up employment, or devote far more time to the ID child than other children, and whether the family can withstand the financial pressure of providing medical and psychological support to an ID child. Raising any child is a huge investment of everything a person has to offer–emotion, resources, time, endless energy. Adding an intellectual disability into the mix increases the investment tenfold. What is the trade-off?

    Even more important, at least to me, is the outcome for the child itself, as I mentioned previously. These are decisions that must be made by the parents, not government. Government and its laws should have ZERO say in what parents decide about reproduction, except to ensure that honest information is given to parents, medical personnel are properly trained, and medications are not contaminated.

    Once government claims the right to dictate reproduction choices to parents, they can just as easily force abortion as deny it.

    • Denele, your comments seem to be primarily focused on lowering the number of future I/DD children. Moving forward, how do you propose that society deal with the exponential growth of I/DD children becoming I/DD adults, and the associated costs?

  14. I think it’s obvious that there’s going to have to be more residential housing operations — call them institutions if you wish — but hopefully not as neglectful or abusive of the pre-1970s mental health institutions. Parents don’t live forever and with modern medicine, even compromised genetics and other birth defects don’t end lives nearly as soon as they once did. But you’re right — my thrust is about the longterm solution, to educate people about the dismal outlook for ID children/adults so that fewer are born while eliminating all restrictions on abortion and pushing research toward even better prenatal testing.

  15. “Even more important, at least to me, is the outcome for the child itself, as I mentioned previously. These are decisions that must be made by the parents, not government. Government and its laws should have ZERO say in what parents decide about reproduction, except to ensure that honest information is given to parents, medical personnel are properly trained, and medications are not contaminated.”

    I think if you met and spoke with families who have a child with Down Syndrome you would have a fountain of personal first hand knowledge. I can honestly attest to the fact my daughter is happy. So can others. I truly think this would make a wonderful blog for you and my husband and I would be eager to be your first interview.

    I agree, doctors do need to be completely honest with a Down syndrome diagnosis. But many only choose to convey the negative possible outcomes, leaving families without a complete picture of life with Down syndrome. Why not tell parents about the therapies, the early intervention, and other families who can answer their questions? Why not share all the resources available and then let the parents decide?

    I found the link below interesting. Oh and the trade off for me is knowing I am not sorry for giving my daughter life. How many women who have had abortions end up regretting their decision? That to might be something to consider researching, post abortive regrets vs. post birth regrets.

    https://www.washingtonpost.com/news/posteverything/wp/2017/08/24/people-with-down-syndrome-are-happy-why-are-we-trying-to-eliminate-them/?utm_term=.06d9f0a3e101

  16. Crystal, I have no doubt you love your DS child. But I also have no doubt that the many women who have aborted a DS fetus are very glad they did. Women should be fully informed and legally free to make that choice.

    • Denele,

      To quote and expand on your comments: “Unlike retired persons who have contributed over a lifetime to Social Security and Medicare…Of course not every person born without disability is a benefit to our nation. We have no way to know during pregnancy which child might become an alcoholic, or a criminal, etc.” Therefore I pose the following questions to you:

      1) Based on your comments, would it be fair to also conclude that not all retired people are, or even have been, a benefit to this nation?

      2) What to retired people actually contribute to this nation?

      3) Since the care of retired people cost twice as much, more more, than non-retired people, should it not be public policy to mandate their families to care for them?

  17. 1) Of course
    2) Many take on second jobs, or do other work
    3) No because they have contributed to the social security, medicare systems.
    But you’re missing the point. Down syndrome can be diagnosed in utero and the woman can decide to abort. No one is going to start eliminating living people no matter how dysfunctional they might be. Yes yes, I hear you now, many people consider fetuses “living people.” But they’re not people until they’re born. They’re fetuses. Like an egg is not a chicken.

  18. “But I also have no doubt that the many women who have aborted a DS fetus are very glad they did.”

    Perhaps. It is interesting to me though how more women regret aborting their child than having them.

      • Your first two citations are from a pro-life group and therefore discredited.

        Your third citation states clearly that the data came from group of 45 women responding to a request BY A PASTOR. The study itself states: “Since letter-writers came from a self-selected population group with a known bias against abortion and only negative experiences were solicited, these experiences must be regarded as subjective and anecdotal.”

        If you’re interested in real data, read this: “The predicted probability of reporting that abortion was the right decision was over 99% at all time points over three years. Women with more planned pregnancies and who had more difficulty deciding to terminate the pregnancy had lower odds of reporting the abortion was the right decision (aOR=0.71 [0.60, 0.85] and 0.46 [0.36, 0.64], respectively). Both negative and positive emotions declined over time, with no differences between women having procedures near gestational age limits versus first-trimester abortions. Higher perceived community abortion stigma and lower social support were associated with more negative emotions (b=0.45 [0.31, 0.58] and b=-0.61 [-0.93, -0.29], respectively).”
        See https://www.ncbi.nlm.nih.gov/pubmed/26154386?dopt=Abstract

        Your fourth ‘citation’ has the same problem of legitimacy due to its source from a pro-life website. Real data can be found elsewhere:

        https://www.guttmacher.org/perspectives50/emotional-and-mental-health-after-abortion
        “One week after having an abortion, women in a 2008­–2010 study “felt more regret, sadness and anger about the pregnancy than about the abortion, and felt more relief and happiness about the abortion than about the pregnancy.” The likelihood of having a mainly negative emotional response to the abortion increased with the extent to which women had planned the pregnancy and had had difficulty making the abortion decision.” This is one of four study results cited by Guttmacher at this link.

        https://time.com/3956781/women-abortion-regret-reproductive-health/
        “Ninety-five percent of women who have had abortions do not regret the decision to terminate their pregnancies, according to a study published last week in the multidisciplinary academic journal PLOS ONE. The study was carried out by researchers from the Bixby Center for Global Reproductive Health at UC San Francisco’s School of Medicine, and from the university’s division of biostatistics.”

        My opinion: Down syndrome children/adults can never serve an independent constructive role in society. With an average IQ of 50, yes, about 20% can hold employment and otherwise find a path in normal society–with the indulgence of employers and others with whom they interact. That leaves 80% dependent on support for a lifetime. Yes, parents develop warm fuzzy feelings because 1) these are their children and 2) they are permanently childlike. I get it. My initial statements about this issue were regarding a pending law before the Arkansas senate to ban abortion for DS fetuses. I spoke strongly against any abortion ban. My point in ALL OF THIS is that parents should have the legal right to choose whether to produce such a child who will never be able to take care of themselves.

  19. As I will never be okay with abortion, this is my final comments.

    It would be interesting to conduct another study on the same women and see if they still feel the same.

    “Yes, parents develop warm fuzzy feelings because 1) these are their children and 2) they are permanently childlike. I get it.”

    No, you don’t. I don’t have warm fuzzy feelings for my child. I love her fiercely and will always advocate for her against those in our society that views her as a burden.

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