Great News: Simon’s Law Introduced in Congress

Sheryl Crosier, the mother of Simon, a baby with Trisomy 18, and I, with my baby Karen who had Down’s Syndrome and a severe heart defect, worked for years to get a law passed In Missouri to get our children protected from the lethal medical discrimination against children with disabilities we encountered (See my 2016 blog My testimony for Simon’s Law” )

Sheryl worked hard to get other states to do the same and in 2020, I wrote a blog titled “Strongest “Simon’s Law” Yet is Passed in Iowa” .

Now, Sheryl and Allies of Simon’s Law have had HR-6344 (The Simon Crosier Act) introduced into Congress.

Nancy V.

Legislative Action Alert for Congressional HR-6344 (The Simon Crosier Act) – All Star Press.com

Legislative Action Alert for Congressional HR-6344 (The Simon Crosier Act)

 RNILSEN12  FEBRUARY 9, 2024 3 MIN READ 

The Board of Directors of Simon’s Law, a nationwide network of families, guardians, and professionals dedicated to creating national awareness and protection for medically endangered pediatric dependents with life-threatening diagnosis through education, accountability, parental rights legislation, and Patients’ Bill of Rights, calls on all citizens to petition their congressmen to support The Simon Crosier Act.

HR-6344 (The Simon Crosier Act) proposes to amend titles XVII and XIX of the Social Security Act to require providers of services and health maintenance organizations under the Medicare and Medicaid programs to provide for certain policies to be in place relating to do-not-resuscitate orders or similar physician’s orders for unemancipated minors receiving services.

The Simon Crosier Act (HR-6344) is currently waiting for the House Committee On Energy and Commerce to mark it up. Please take a moment to reach out to committee members, especially Chairwoman Rodgers (R-Washington) at (202) 225-2006, with the following message:

My name is your name, I am the parent of a child with a life-limiting diagnosis, who is at risk of having resuscitative measures withheld without my consent, with every hospitalization in your state. Therefore, I urge you to mark up HR-6344 (The Simon Crosier Act), so that it has the opportunity to move beyond the House Committee On Energy and Commerce to protect my parental right to be included in DNR determinations for my child.

REPUBLICAN:

1.     Cathay McMorris Rodgers, WA (202) 225-2006

2.     Michael C. Burgess, TX (202) 225-7772

3.     Robert E. Latta, OH (202) 225-6405

4.     Brett Guthrie, KY (202) 225-3501

5.     H. Morgan Griffith, VA (202) 225-3861

6.     Gus M. Bilirakis, FL (202) 225-5755

7.     Larry Bushon, IN (202) 225-4636

8.     Richard Hudson, NC (202) 225-3715

9.     Tim Walberg, MI (202) 225-6276

10.              Earl L. “Buddy” Carter, GA (202) 225-5831

11.              Jeff Duncan, SC (202) 225-5301

12.              Gary J. Palmer, AL (202) 225-4921

13.              Neal P. Dunn, FL (202) 225-5235

14.              John R. Curtis, UT (202) 225-7751

15.              Debbie Lesko, AZ (202) 225-4576

16.              Greg Pence, IN (202) 225-3021

17.              Dan Crenshaw, TX (202) 225-6565

18.              John Joyce, PA (202) 225-2431

19.              Kelly Armstong, ND (202) 225-2611

20.              Randy K. Weber, Sr., TX (202) 225-2831

21.              Rick W. Allen, GA (202) 225-2823

22.              Troy Balderson, OH (202) 225-5355

23.              Russ Fulcher, ID (202) 225-6611

24.              August Pfluger, TX (202) 225-3605

25.              Diana Harshbarger, TN (202) 225-6356

26.              Mariannette Miller-Meeks, IA (202) 225-6576

27.              Kat Cammack, FL (202) 225-5744

28.              Jay Obernolte, CA (202) 225-5861

DEMOCRAT:

1.     Frank Pallone, Jr., NJ (202) 225-4671

2.     Anna G. Eshoo, CA (202) 225-8104

3.     Diana DeGette, CO (202) 225-4431

4.     Janice D. Schakowsky, IL (202) 225-2111

5.     Doris O. Matsui, CA (202) 225-7163

6.     Kathy Castor, FL (202) 225-3376

7.     John P. Sarbanes, MD (202) 225-4016

8.     Paul Tonko, NY (202) 225-5076

9.     Yvette D. Clarke, NY (202) 225-6231

10.              Tony Cárdenas, CA (202) 225-6131

11.              Raul Ruiz, CA (202) 225-5330

12.              Scott H. Peters, CA (202) 225-0508

13.              Debbie Dingell, MI (202) 225-4071

14.              Marc A. Veasey, TX (202) 225-9897

15.              Ann M. Kuster, NH (202) 225-5206

16.              Robin L. Kelly, IL (202) 225-0773

17.              Nanette Diaz Barragán, CA (202) 225-8220

18.              Lisa Blunt Rochester, DE (202) 225-4165

19.              Darren Soto, FL (202) 225-9889

20.              Angie Crian, MN (202) 225-2271

21.              Kim Schrier, WA (202) 225-7761

22.              Lori Trahan, MA (202) 225-3411

23.              Lizzie Fletcher, TX (202) 225-2571

The contact list of politicians and their office contacts is available from the public Congress website for the Committee On Energy and Commerce.

For further information or media inquiries, please contact:
Sheryl Crosier – Mother of Simon, Founder of Simon’s Law – Sheryl@SimonsLaw.org
Sand Enzminger – Director of Operations, Simon’s Kids – Sandi@SimonsLaw.org
Website: www.SimonsLaw.org

Read about Simon’s Life and His Impact

Progress in the War Against Conscience Rights

As I wrote in my 2016 blog Conscientious Objection, Conscience Rights and Workplace Discrimination” :

The tragic cases of Nancy Cruzan and Christine Busalacchi , young Missouri women who were claimed to be in a “persistent vegetative state” and starved and dehydrated to death, outraged those of us in Missouri Nurses for Life and we took action.

Besides educating people about severe brain damage, treatment, cases of recovery and the radical change in medical ethics that could lead to the legalization of euthanasia, we also fought for healthcare providers’ rights against workplace discrimination for refusing to participate in deliberate death decisions. We talked to nurses who were threatened with termination.

Although Missouri had some protections against forcing participating in abortion, there were no statutes we could find where health care providers were protected against being forced to participate in deliberate death decisions. We were also told by some legislators that our chance of success was almost nil.

Nevertheless, we persisted and after years of work and enduring legislators watering down our original proposal to include lethal overdoses and strong penalties, Missouri Revised Statutes, Section 404.872.1 was finally signed into law in 1992. It states:

Refusal to honor health care decision, discrimination prohibited, when.

404.872. No physician, nurse, or other individual who is a health care provider or an employee of a health care facility shall be discharged or otherwise discriminated against in his employment or employment application for refusing to honor a health care decision withholding or withdrawing life-sustaining treatment if such refusal is based upon the individual’s religious beliefs, or sincerely held moral convictions.

(L. 1992 S.B. 573 & 634 § 7)

PROGRESS DURING THE TRUMP ADMINISTRATION

In 2018, the Trump administration announced a new Conscience and Religious Freedom Division  in the department of Health and Human Services’ Office for Civil Rights (OCR) to enforce “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services”. The division specifically mentions “issues such as abortion and assisted suicide (among others) in HHS-funded or conducted programs and activities” and includes a link to file a conscience or religious freedom complaint “if you feel a health care provider or government agency coerced or discriminated against you (or someone else) unlawfully”.

Both Planned Parenthood (abortion) and Compassion and Choices (assisted suicide) loudly condemned this.

Lawsuits were quickly filed by groups like Americans United for Separation of Church and State and the Center for Reproductive Rights, delaying implementation of the Final Conscience Rule until at least late November. The first lawsuit was filed by San Francisco within hours of the announcement of the Rule.

NOW STATES ARE GETTING INVOLVED

In 2020, the Medical Conscience Rights Initiative (MCRI)  was launched by the Religious Freedom Institute, Alliance Defending Freedom and the Christ Medicus Foundation to promote legislation on the state level “to protect America’s healthcare providers from mandates to perform voluntary procedures in violation of their conscience (e.g., abortion, physician assisted suicide, gender transition surgery, etc.).”

Now five states-Arkansas, Ohio, South Carolina, Florida and now Montana– have enacted versions of this model legislation while “similar efforts are ongoing in multiple other states.”

CONCLUSION

Conscience rights are a necessity, especially since as Dr. Donna Harrison, director of the American Association of Pro-Life Obstetricians and Gynecologists (AAPLOG) makes the crucial point that:

 “Those who oppose the HHS Conscience Rule demonstrate their clear intention to squeeze out of the medical profession any doctor who still abides by the Hippocratic Oath, and to squelch any opposition to forcing doctors to kill human beings at the beginning and end of life.” (Emphasis added)

Disturbingly, as a 2021 paper “Teaching the Holocaust in Nursing Schools: The Perspective of the Victims and Survivors” points out: “the majority of nursing and medical schools do not include Holocaust and genocide studies in their curriculum“, unlike years ago when it was included as an essential part of medical ethics education.

The results are frightening, as I wrote in a 2019 blog “How Could This Happen? Ohio Doctor Accused of Murder in 25 Patient Overdose Deaths”. The doctor was eventually acquitted of murder after “Husel’s defense team, led by high-profile attorney Jose Baez, argued that no maximum doses of fentanyl are considered illegal under state law and that his client was trying to give comfort care to people who were dying or near death.” (Emphasis added)

 Today, both the American Medical Association and American Nurses Association champion “abortion rights” and have dropped their total opposition to medically assisted suicide.

Without conscience rights and whistleblower protections, our health care system can not only become unethical but also downright dangerous to both healthcare providers and patients.

Six Problems with Covid 19 Vaccination Mandates

When the Covid 19 vaccine was first authorized for emergency use in December, 2020, President-elect Joe Biden said that he wouldn’t impose national mandates to get vaccinated for Covid 19.

But on September 9, 2021 and in a televised speech, President Joe Biden announced a federal Covid 19 vaccination mandate affecting as many as 100 million Americans “in an all-out effort to increase COVID-19 vaccinations and curb the surging delta variant.”

Calling Covid 19 “a pandemic of the unvaccinated” and that “our patience is wearing thin” with the estimated 80 million Americans who have not been vaccinated, President Biden announced new rules that:

“mandate that all employers with more than 100 workers require them to be vaccinated or test for the virus weekly, affecting about 80 million Americans. And the roughly 17 million workers at health facilities that receive federal Medicare or Medicaid also will have to be fully vaccinated.”

and signed

“an executive order to require vaccination for employees of the executive branch and contractors who do business with the federal government — with no option to test out. That covers several million more workers.” (Emphasis added)

PROBLEM ONE

There are different rules for different groups people, leading to confusion and further divisiveness.

For example, while international travelers visiting the US must provide proof of vaccination before being allowed into the country, the hundreds of thousands of people illegally crossing our southern border and being released into our country are not required to have the Covid 19 vaccine.

What scientific justification is there for this?

PROBLEM TWO

Now the Biden administration just unveiled its new 490 page Occupational Safety and Health Administration’s (OSHA) “emergency temporary standard” that also requires companies with 100 or more employees to mandate that workers get vaccinated, or tested weekly and wear a face mask

But surprisingly, as a November 4, 2021Wall Street Journal editorial article titled “OSHA’s Vaccine Mandate Overkill notes:

“Separately, the Centers for Medicare and Medicaid Services issued a vaccine mandate for health-care facilities with no testing option.” (Emphasis added)

and

“According to a Kaiser Family Foundation survey last week, 37% of unvaccinated workers said they would leave if their employer required them to get a vaccine or be tested weekly.“(All emphasis added)

PROBLEM THREE

Firing unvaccinated employees in a tight labor market when so many employers are desperate to hire hurts not only employees but also businesses.

In addition, these vaccine mandate rules have led to vaccine refusal by some essential workers like police, garbage collectors and healthcare workers in cities like New York who then lose their jobs. This not only affects these workers and their families but also the delivery of these essential services to the populace.

PROBLEM FOUR

Religious or medical exemptions from taking the vaccine are often difficult to obtain.

For example, a hospital system in Arkansas maintains that the “majority of religious exemption requests cited the use of fetal cell lines in the development of vaccines” but counters that the “practice uses cells grown in labs to test many new vaccines and drugs, including common antacids and cold medications.”

Therefore, the hospital’s religious exemption form “includes a list of 30 common medications that used fetal cell lines during research and development” and asks employees to attest that they:

“truthfully acknowledge and affirm that my sincerely held religious belief is consistent and true” and that they won’t use the medications listed.” (Emphasis added)

PROBLEM FIVE

Now the CDC has announced emergency use authorization of Covid 19 vaccine for children 5-11. If mandated, what will that mean for schools and parental rights to refuse or consent to medical treatment?

PROBLEM SIX

So far, 68% of Americans have received at least one dose of a vaccine and 59% are fully vaccinated.

At the same time, at least 27 states so far have decided to take legal action against the new rules, claiming the mandate is an example of federal overreach and both “unlawful and unconstitutional.” And on November 6, 2021, a US federal appeals court temporarily halted President Biden’s COVID-19 vaccine mandate for businesses, citing potentially “grave statutory and constitutional” issues.

CONCLUSION

Unfortunately, the Covid 19 vaccination mandates have caused some severe divisions between those who have been vaccinated and and those who refuse to be vaccinated for various reasons.

My husband and I are fully vaccinated but some of our adult children are not. We encouraged them to take the vaccine but we have to respect their decision. We believe that people who refuse or are hesitant about the vaccine should not be vilified or treated as second class citizens.

We are all Americans and we need to work together.

And there may be hope on the horizon as new Covid 19 pills are being developed and showing promise with Pfizer’s pill said to be 89% effective for mild to moderate Covid 19 symptoms. Pfizer now plans to ask the Food and Drug Administration to authorize the pill’s use this month. Another Covid 19 pill from Merck & Co. was cleared for use in the U.K. this week.

These pills could be a gamechanger and help heal not only Covid 19 but also our fractured country.

My 2000 Voices Magazine Article: Who Wants a “Defective” Baby?

This month, it was revealed that President Joe Biden “wants Congress to pass a law making abortions legal up to birth” after the US Supreme Court refused to temporarily block the Texas Heartbeat Law.

While talking to a friend about this, I remembered a 2000 Voices magazine article I wrote about why every unborn child deserves protection and she asked that I send it to her. Sadly, this magazine is no longer publishing.

This is the article I wrote that appears on my other blogsite that contains articles, op-eds, etc. that I wrote up to 2014, when I started this blog. The reflection at the end of this article was published by the National Down Syndrome Association and was-to my surprise-eventually reprinted in several other countries.

Voices Online Edition
Summer 2000
Volume XV, No. 2 – Jubilee Year

Who Wants a “Defective” Baby?

by Nancy Valko, R.N.

“Of course, no one wants to adopt a defective baby. ” This was said with much emotion (and not much charm) by an older gentleman in a class at a local university where I was speaking this past April. I had been invited to discuss the legalities and effects of Roe v. Wade from a pro-life point of view to a class of senior citizens studying the Constitution and the Supreme Court.

While several of these senior citizen students defended abortion as a matter of complete privacy for the mother, their arguments centered around the “need” for legalized abortion as a solution for social problems.

Since I had told the story of my daughter Karen, born in 1982 with Down Syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a “defective” baby.

“Happily, sir,” I told the senior student, “You are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down Syndrome. Just the night before, I added, I had found a new website for matching prospective parents with children who had chromosomal and physical defects.”

The student refused to believe that this could be true.

The effects of Roe v. Wade
Life of the mother, incest, rape and fetal defect are the four hard cases usually cited to justify what has now become abortion on demand. All of these are uncommon reasons given in the estimated 1.3 million abortions every year; but the possibility of having a child with a birth defect is a common fear nearly all expectant mothers experience and, not surprisingly, polls show that the majority of the public support abortion in this circumstance.

Although I have always been pro-life, I could understand the fear underlying these poll results — until my own daughter was born.

Just two weeks before the birth of my daughter Karen, I saw a mother trying to pry her young son with Down Syndrome away from a display case at the supermarket. She looked exhausted.

“Please, Lord,” I silently prayed, “Let this baby be ok. I can handle anything but Downs.”

When Karen was born with Down Syndrome, I was stunned. But I was quickly put in touch with mothers from the Down Syndrome Association who replaced my fears with information and realistic hope.

Then a doctor told me the truly bad news. Karen had a heart defect, one so severe that it seemed inoperable and she was not expected to live more than 2 months. That certainly put things in the proper perspective.

What “pro-choice” really means
It turned out later that Karen’s heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery, but I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success — if my child didn’t also have Down Syndrome. Apparently, even though Karen was now a legal person according to Roe v. Wade by the fact of her birth, this non-treatment option could act as a kind of 4th trimester abortion.

It was then that I realized what pro-choice really meant: Choice says it doesn’t really matter if a particular child lives or dies. Choice says the only thing that really matters is how I feel about this child and my circumstances. I may be “Woman Hear Me Roar” in other areas according to the militant feminists, but I was not necessarily strong enough for a child like this.

I also finally figured out that Roe v. Wade’s effects went far beyond the proverbial desperate woman determined to end her pregnancy either legally or illegally. The abortion mentality had so corrupted society that it even endangered children like my Karen after birth. Too many people, like the student in Supreme Court class, unfortunately viewed Karen as a tragedy to be prevented.

Medical progress or search and destroy?
In the late 1950s, a picture of the unborn baby using sound waves became the first technique developed to provide a window to the womb. Ultrasound in recent years has been used to save countless lives by showing women that they were carrying a living human being rather than the clump of cells often referred to in abortion clinics.

But while expectant parents now routinely and proudly show ultrasound pictures of their developing baby, there is a darker side to prenatal testing. Besides ultrasound, which can show some birth defects, blood tests like AFP testing and the Triple Screen to test for neural tube defects or Down Syndrome are now becoming a routine part of prenatal care. Amniocentesis and chorionic villus sampling are also widely available tests to detect problems in the developing baby. It seems that every year, new testing techniques are tried and older ones refined in the quest to find birth defects prenatally.

97% of the time, women receive the good news that their baby seems fine; but the tests are not foolproof, and they can only test for hundreds of the thousands of known birth defects. Relatively few such birth defects can be treated in the womb at the present time. Some women want testing so that they can prepare for a child who has a birth defect, but when the tests do show a possible problem like Down Syndrome, up to 90% of women will abort.

While some hail prenatal testing as a way to prevent birth defects, the effects of such testing has led to what author Barbara Katz Rothman calls the “tentative pregnancy” in her 1993 book of the same name. Although Rothman calls herself pro-choice, her studies of women considering amniocentesis led to her conclude that such testing has changed the normal maternal-child bonding in pregnancy and the experience of motherhood, usually for the worse.

“I might not be pregnant”
I observed this firsthand several years ago when I ran into an acquaintance and congratulated her on her obvious pregnancy. I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

Diane, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Downs, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and apologized for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities.

On one hand, people are inspired by the stories of people who have disabilities and support organizations like the Special Olympics; but, on the other hand, many people consider it almost irresponsible to bring a child with disabilities into the world to suffer when prenatal testing and abortion are so available.

But as the vast majority of parents who are either natural or adoptive parents of children with disabilities will attest, all children are born with both special gifts and special limitations. No child should be denied birth because of a disability or even a limited life expectancy.

Women who do abort after a diagnosis of a birth defect are also hurt. Besides depriving themselves of the special joys — which occur along with the difficulties — of loving and caring for such a child, these women often experience unresolved grief, guilt and second-guessing instead of the relief and peace they expect.

A few years ago, a local hospital which performs late-term abortions for birth defects asked a miscarriage and stillbirth counseling group to help with their distressed patients. The group declined, citing the fact that the most reassuring message they give grieving mothers is that there is nothing they did or didn’t do that caused the death of their babies. Obviously, that was not a statement they could make to mothers who abort. There is a very real difference between losing and terminating a child.

How many of these mothers knew before their abortions that, in practical terms, there has never been a better array of services and support for children with disabilities and their parents? Or that their children were dearly wanted by prospective adoptive parents? Such information might have been just the support they needed to choose life for their children.

Final thoughts
Despite the best medical care, my Karen died at the age of 5 and 1/2 months, but the impact of her life has lived on. At her funeral Mass, the priest talked about how this child who never walked or talked had transformed the lives of those who met her.

Especially mine.

After Karen died, I sat down and tried to put into words what Karen and all children with disabilities have to teach the rest of us. The following reflection was published in the National Down Syndrome Association newsletter in May, 1984.

THINGS NO TEACHER EVER TAUGHT
In 1982 my daughter, Karen, was born with Down Syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen may have been retarded but she taught me things no teacher ever did.

Karen taught me:

That life isn’t fair — to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down Syndrome is an inadequate description of a person. That I am not “perfect” either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.

That I needed to worry less and celebrate more.


Sources:

1. “Prenatal Testing”, by Nancy Valko, R.N. and T. Murphy Goodwin, M.D., pamphlet, Easton Publishing Co.

2. “Doctors have prenatal test for 450 genetic diseases” by Kim Painter. USA Today, 8/15/97

3. Rothman, Barbara Katz. The Tentative Pregnancy. Revised, 1993. WW Norton and Co.

4. “Advances, and Angst, in a New Era of Ultrasound”, by Randi Hutter Epstein. New York Times. May 9, 2000.

Nancy Valko, R.N., a contributing editor for Voices, is a former president of Missouri Nurses for Life who has practiced in St. Louis for more than thirty years. An expert on life issues, Mrs. Valko writes a regular column on the subject for Voices.


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