Schools + Medicaid – Parents = No informed consent, take action now

Tell US Dept. of Ed schools can’t bill Medicaid without parental consent. Medicaid mix-ups happen when parents are left out of the loop at schools

Published: Aug 1, 2023

Our Stand: At-A-Glance

Thank you to Indiana state Senator and US Congressional candidate, Andy Zay for alerting us to this proposed federal regulation. This is a great example of what it looks like to truly partner with lawmakers in the protection of health freedom.

  • The U.S. Department of Education is proposing to amend the law that protects students with disabilities to eliminate the requirement for informed consent before the school makes a Medicaid claim on behalf of their child.
  • When schools make Medicaid claims, it can affect coverage decisions when children need to receive care outside of school, disrupting a plan of care or causing denial of coverage for services deemed to have been provided by schools.
  • Parents have the total picture of a child’s health care needs. They must be central to the decision-making, not deemed an “unnecessary barrier,” or “administrative burden,” which is the way the DOE characterizes the need for informed consent in the “Notice of Proposed Rulemaking” in the Federal Register.
  • The U.S. Department of Education (DOE) believes it’s simply an “administrative burden” to get consent before billing Medicaid for services. Disabled children need care, parents need support from schools, and schools need funding. Parents are being pushed aside while schools are being called “home” for medical purposes.
  • Right now, parents are facing losing the right to consent for one element in a sea of administrative decisions. This is death of parental consent by 1000 cuts. Cutting parents out of the equation will never lead to improved outcomes for children. What will be the next fundamental parenting right labeled as an “administrative burden” to be removed?
  • Under current law, schools are also required to give parents notice of their rights.The proposal would eliminate the requirement to notify parents they have the right to withdraw consent to disclose their child’s personally identifiable information (PII), and their child will get legally protected services regardless of whether they consent to Medicaid billing.
  • Medicaid is being used as a funding source for cash-strapped schools, therefore informed consent becomes a “barrier” to that money if parents choose to preserve their child’s private insurance coverage rather than risk it for the sake of the school’s Medicaid reimbursement.
  • If a school is looking to Medicaid payments to supplement skin-and-bones budgets, how does that affect the services deemed necessary on an Individualized Education Plan (IEP)? We saw questions about diagnosis and treatment plans for COVID based on federal incentives for certain medical decisions over others. What’s best for the bottom line is not always what’s best for our children’s health.
  • According to the proposed regulation, the justification for wanting to remove parental consent before Medicaid funds are solicited by schools is because the “Biden-Harris administration is committed to strengthening and increasing access to school-based health services,” and the DOE along with HHS must “collaborate to eliminate barriers to the delivery of Medicaid services to enrolled children” by increasing medical care at schools through SBHCs.
  • The explanation by the DOE specifically notes that children with disabilities are “disproportionately and significantly more affected by” mental health challenges. Reading between the lines, we can see this proposal to remove parental consent as a “barrier” for schools to access federal funding for medical and mental health care is in line with the administration’s stated agenda to create “medical homes” for children at their schools, away from their parents, while states all over the country lower the age of consent for medical, reproductive, and mental health treatments to as low as 11 years of age in some areas. When any person or organization targets our children specifically, and only when they are away from parents, it should be a red flag; this is predatory behavior.
  • In general, schools and education associations are in support of this regulation because it reduces their paperwork. But that is not a good reason to remove parents from the process and will never result in a net benefit to the child.The bottom line for administrators (with presumably the intention of funding more services for kids in school) is that it’s more efficient to get the parents out of the way. They don’t want to have difficult conversations where parents might question the motives of the school, or pay personnel to do the job of keeping track of the privacy and consent rights of parents.
  • You can act right now to tell the DOE, and the White House, that parents must remain central in the health care of their children. The family unit is fundamental to a child’s development, well-being, and health. Countless studies demonstrate that outcomes improve the more engaged and involved the family is in the child’s care. Schools and governments should play a supportive role to families, not see them as a barrier to decision-making for their children. Send a comment today using the form on the right.

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Our Stand: The Full Story

List of changes to the existing regulations

Propose to completely remove this language from the statute:

(iv) Prior to accessing a child’s or parent’s public benefits or insurance for the first time, and after providing notification to the child’s parents consistent with paragraph (d)(2)(v) of this section, must obtain written, parental consent that—

(A) Meets the requirements of §99.30 of this title and §300.622, which consent must specify the personally identifiable information that may be disclosed (e.g., records or information about the services that may be provided to a particular child), the purpose of the disclosure (e.g., billing for services under part 300), and the agency to which the disclosure may be made (e.g., the State’s public benefits or insurance program (e.g., Medicaid)); and

(B) Specifies that the parent understands and agrees that the public agency may access the parent’s or child’s public benefits or insurance to pay for services under part 300.

A sampling of educational comments that have already been submitted to the Department of Education 

(Pressed for time? Emphasis added for a quicker scroll.)

SUPPORTING removal of parental consent

Key themes: administrative simplicity, increased funding for schools, access to care

Minnesota School Boards Association is in support of the proposed rule which amends the IDEA Part B regulations to remove the requirement for public agencies to obtain parental consent prior to accessing, for the first time, a child’s public benefits or insurance for students who require these services in order to benefit from special education. The proposed amendment would reduce administrative burden, lessen paperwork, and increase the efficient access to MA reimbursements through third party billing. Because of the chronic underfunding of special education services, the money that is obtained through third party billing can offset school districts’ special education cross-subsidies to improve services for students. As these cross-subsidies must be covered by districts’ general funds, offsetting via third party billing has a significant positive impact for all students. We welcome the proposed changes to improve and streamline this process.

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Please remove the parental consent requirements. I am a parent of a special education student and an administrator.Parents often use this when they are upset at the district to revoke consent and as a former school psych we can bill medi-cal for GE students without consent but not students IEP. This reduces funding that can be used for mental health services.

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I am in full support of this proposal. Obtaining parental consent has been an enormous barrier for school districts who provide necessary medical services to students. Considering this parental consent is currently only a requirement for a particular student set (Special Education,) it also adds unnecessary division and confusion of requirements within the school. Removing the parental consent requirement would not impact student services, or parent involvement. It would merely allow schools to determine eligibility with less limitations, and seek allowable reimbursement for the medical services they provide. In turn, that reimbursement helps to support schools with providing those services to more students in need.

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Please remove the need to obtain consent from parents before school districts can access money from Medicaid. Parents already consent to the transfer of data when they apply for medicaid and so requiring school districts to get consent is redundant and unnecessary. The school district I work with spends many employees’ time tracking down families to get consent so that the district can get money for services they will provide with or without the consent but that can only get a portion of funding for if they have the consent! This is causing such a burden on our district when it does not need to. School administrators are already struggling to keep teachers, and run schools without extra hoops like these to jump through in order to be able to survive.

Editor’s note: parents do not give blanket consent for children’s data to be transferred at will, for any purpose, to any entity.

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I am in support of this rule change. As someone who has worked extensively with school districts in Kansas on school-based claiming, this change will open the door for more efficient and effective methods of serving children with much-needed services. Additionally, there is an increased need for behavioral health services in schools. This rule change will allow for creative solutions at the local level.

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I totally support the proposal of removing the requirement of obtaining parental consent to be able to bill for school health related services. I think this should be considered because this would help with cost and time savings from all parts that needs to be involved to do the process and paperwork needed to get the consent; time that we really need to provide services to our students. Parents or guardians of eligible medicaid students, already agreed to receive services from medicaid providers when they did the application for Medicaid, so should not be a problem for schools to bill for services provided as other many other providers in the medical field to receive reimbursement, which would be used back for the students we serve providing better resources and services for them. Removing this requirement would not affect negatively the equal service or education we are already providing to all of our students; in fact, I consider would be very beneficial. Providers would be able to work smoothly with the billing process without the need of spending much time in analyzing or tracking if they can bill or not for a student because the requirement of consent.

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I am in support of the proposed rule change to allow public schools to access allowable benefits prior to gaining parental consent. The public schools are entitled to access funding for medically related services provided in the school setting. Existing requirements for consent serve to increase an already overburdensome paperwork process in Special Education as the provision only applies to students with disabilities. There are no comparable requirements for consent in accessing public funds for students without disabilities, thereby creating a misaligned and potential discriminatory system. Public school systems incur tremendous cost for provision of medically related services provided to students as a part of a Free Appropriate Public Education and are entitled to this reimbursement. Removal of the requirement for parental consent for students with disabilities will ensure equal treatment of both groups of students.

OPPOSITION to eliminating written consent

Key themes: disruption of health care outside of school setting, financial hardships, parental involvement in ongoing health planning.

We adopted our daughter via the foster care system. Medicaid became attached to her (until age 18) automatically after finalizing adoption. We have a different primary insurance so medicaid was our secondary insurance. Our daughter lives with disabilities that requires a comprehensive IEP. When we authorized billing to Medicaid for IEP services a huge conflict arose between our primary insurance and medicaid as to who would pay for her other (unrelated to IEP) healthcare services such as her surgery etc. It took almost one year to resolve and it was very stressful because we had this looming medical bill and did not want to ruin our great credit. Therefore ever since that experience we no longer touch medicaid in any setting for any need whatsoever for fear of going through that stressful experience again. We just pay what is due rather than medicaid pick up anything to avoid conflict. We have tried to cancel the medicaid but have been unsuccessful therefore her name pops up when our school system looks her up to bill for the IEP services AND we have since not provided consent to bill medicaid to avoid conflict with our primary and secondary insurance while I try to cancel the medicaid. Avoiding parental consent would mean she would not be able to receive her services via the IEP in a school setting then I would have to plan to tap those services elsewhere outside of school provider to engage in the IEP meetings, and it all becomes convoluted. OR she receives the services and yet again we are thrown into the insurance trenches of who pays what . It is already stressful to raise a child with multiple disabilities. Please please do not change the parental consent rule as it would add yet another layer of hardship for our family.

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This rule change is unacceptable. First, the focus should be on fully funding IDEA, not on drawing from other needed funds. The school accessing a child’s insurance could have the effect of hindering the child from receiving needed services outside school. Schools do not provide clinic equivalent services and therefore should not receive funding intended for medically necessary clinics services. Additionally, EQUAL treatment of children with and without disabilities is essentially discriminatory since ADA requires EQUITABLE treatment, allowing children to receive treatment according to their level and type of need. One size fits all changes to existing IDEA policy is a step backward for disability and education rights.

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Just removing the need for consent to “bill” does not remove the barriers schools face if they are still required to obtain consent to disclose information under FERPA. If the intent is to remove barriers for schools in accessing eligible federal Medicaid funds, directing states to include consent to disclose personal information from the student’s education record for Medicaid billing purposes within the Medicaid application would accomplish this. 

Editor’s note: this comment was attributed to the Minnesota Department of Education.

Jill Hines

Directory of Advocacy
A former banker turned homeschool mom, Jill Hines began researching alternatives to conventional medicine in 2010 and what she discovered changed the trajectory of her life. She corrected a worrisome health issue, and embraced a natural approach to wellness. Advocating for informed consent and parental rights became a full-time mission when she joined the board of the Georgia Coalition for Vaccine Choice and later became the co-director of Health Freedom Louisiana. Due to her advocacy efforts during the COVID crisis, Jill was one of 25 Louisianans selected by Central City News as “a hero of the constitutional crisis.” She was also presented the Impact Award for Outstanding Public Service from the government watchdog organization Citizens for a New Louisiana. Jill now represents hundreds of millions of Americans who experienced censorship due to the Biden administration's efforts to suppress disfavored speech as a plaintiff in the landmark lawsuit Missouri v. Biden. Jill holds a marketing degree from Louisiana Tech University and now passionately “sells” health freedom full-time. Serving as Stand for Health Freedom’s advocacy director provides an incredible opportunity to advance the growing movement to preserve the sacred right to refuse unwanted medical interventions for ourselves and our children without fear of retribution.
“We have lived through a terrifying societal, psychological, and medical experiment which afforded us a knowledge that our forefathers tried to impart and we can no longer ignore: Our freedom is tenuous. For our children’s sake, the time is now to take a stand for health freedom.”

Chrissy Scott

Executive Assistant and Social Media Manager

A labor and delivery nurse with a lifelong passion for maternal and fetal health, Chrissy Scott left her job of 19 years after learning the truth about the harms caused by the medical system. In 2009, she was mandated by her employer to receive the H1N1 vaccine during her first trimester of pregnancy with her second child. She was assured that the vaccine was “safe and effective” for pregnant women, but her son was born with a kidney defect that could have been fatal. She didn’t connect the dots to vaccine injury until several years later when the declining health of her oldest son drove her to seek answers outside of allopathic medicine.

This personal journey ignited in her a new passion for truth and transparency in health care. As SHF’s Executive Assistant, Chrissy facilitates communication and local advocacy initiatives alongside Leah Wilson for their home state of Indiana. She also manages and creates graphics for SHF’s social media accounts and the website’s swag shop.

Chrissy earned her nursing degree from Anderson University and served her entire career at her local hospital. While she’s no longer a floor nurse, her five very active boys frequently test her nursing skills! She homeschools her children and has been co-owner of a successful home décor sign business with her sister.

“Parents, being the experts on their own children, are best suited to make decisions for the well-being of their family. To do this properly, they must be given full and accurate information and be free from force or coercion.”

Ellen Chappelle

Writer/Editor

Ellen Chappelle serves as SHF’s resident wordsmith. A seasoned writer and editor, she’s enthusiastic about ensuring that our content is clear, concise, and inspiring.

Ellen is most energized by working on projects that transform lives. A truth seeker as well as a journalist, she’s disturbed by the lack of accuracy in today’s media and determined to help share fact rather than fiction. And having found greater healing with alternative approaches, she’s also passionate about preserving our freedom to make informed health choices.

Past projects include serving as regional editor of a dog magazine, color and trend specialist for a small cosmetics company, arts columnist, newspaper reporter, ghostwriter, and creator of website content for artists and small businesses.

With a degree in journalism and theatre, Ellen is also a performer. She enjoyed singing and dancing on a cruise ship and traveling with a national musical theatre tour, as well as recording industrial videos, television commercials, and radio voiceovers. She also creates handcrafted jewelry in wire, chain maille, and fused glass.

“Despite what some would have us believe, the fact remains that this nation was founded on biblical principles by people who wanted freedom to worship God and live their lives without government involvement. It’s never been more critical to fight for those rights.”

LEAH WILSON

Executive Director and Co-founder

An attorney with a background in complex litigation and advocacy, Leah Wilson is passionate about children’s health and has researched and worked on child welfare issues for more than a decade.

The overmedication of children in foster care as a form of behavior management is what compelled Leah to become an advocate and foster parent. During her time as a court-appointed special advocate for abused and neglected children, Leah witnessed the rampant use of psychiatric drugs among foster kids. She also discovered that, in addition to many extensive requirements, the state had a policy that all foster children and foster families be fully vaccinated, without exception. Through her involvement in law, health and the foster care system, it became abundantly clear to Leah that the single most important issue affecting child welfare in the United States is the practice of one-size-fits-all medicine via medical mandates. This motivated Leah to expand her advocacy beyond foster care to all children nationwide and to start Stand for Health Freedom (SHF) in 2019.

A graduate of the Saint Louis University School of Law, Leah holds dual bachelor degrees in political science and Spanish from Indiana University. In addition to her advocacy work with SHF, Leah is the owner and former operations director of MaxLiving Indy, one of the largest natural health centers in the Midwest. She is also an educator on holistic health as well as a sought-after speaker on issues ranging from religious rights to greening your home.

“Parental rights and religious freedom are God-given natural rights that cannot arbitrarily be taken away by government authorities. Parents are the single most important factor in a child’s success; I stand in full support of this sacred relationship.”

Sayer JI

Director and Co-founder

Sayer Ji is a widely recognized researcher, author, lecturer, activist, and educator on natural health modalities. Among his many roles, he is an advisor to Stand for Health Freedom, a reviewer and editor of the International Journal of Human Nutrition and Functional Medicine, an advisory board member of the National Health Federation, a steering committee member of the Global GMO Free Coalition, and the co-founder and CEO of Systome Biomed Inc., a revolutionary scientific validation framework.

Most notably, Sayer is the founder of Greenmedinfo.com, the world’s most widely referenced, evidence-based natural health resource of its kind. He founded the platform in 2008 to provide an open access, evidence-based resource supporting natural and integrative modalities. Today, Greenmedinfo.com has more than a million visits per month, serving as a trusted resource on myriad health and wellness topics to physicians, healthcare practitioners, clinicians, researchers and consumers worldwide.

Sayer attended Rutgers, The State University of New Jersey, where he studied under the notable American philosopher Dr. Bruce W. Wilshire. He received a Bachelor of Arts in philosophy in 1995, with a focus on the philosophy of science. His new book, Regenerate: Unlocking Your Body’s Radical Resilience through the New Biology, was released in March 2020 and is an Amazon bestseller.

“I truly believe that education will be our greatest shield against accelerating the erosion of civil liberties, including the right to bodily sovereignty, as well as the greatest catalyst for positive change on this planet moving forward.”

Bailey Kuykendoll

Associate Director

Designer and visual marketer Bailey Kuykendoll began advocating for health and religious freedom and parental rights in 2014 after learning she was pregnant. A self-described skeptic, she’s not afraid to ask questions and do copious amounts of research to reach her own conclusions.

She’s also not afraid of hard work. As SHF’s Associate Director, Bailey truly keeps the organizational boat afloat. Working closely with our State Directors in each state, she ensures that SHF has calls-to-action for health-freedom bills and petitions on our website and across social media, spreading the word to encourage people to contact their legislators. She builds campaigns, graphics, website pages, and relationships.

Bailey earned a design degree from Harrington Institute of Design in 2008. She then served as a production assistant on several shows for HGTV, followed by working behind the scenes on the X Factor, small indie films, music videos, and documentaries. Bailey joined Health Freedom Florida after moving to the East Coast, becoming co-president of the grassroots organization in 2019. While at Health Freedom Florida, she successfully filed a state bill designed to stop discrimination based on your health status. She joined SHF in the fall of 2020.

“God placed a calling on my heart back in 2008 to be a part of something bigger for Him. Twelve years later, the opportunity came knocking to help others lean into their natural-born rights and take a stand for themselves and their families. I knew this is where I was called to be, and I have never looked back.”

Valerie Borek

POLICY ANALYST

Valerie Borek is a passionate advocate for health rights and family privacy. A mother of two with degrees in law and biochemistry, she is perfectly positioned to lead SHF advocates through complex health-rights policy. Her work is guided by a love for American values, uncovering truth, and a passion for empowering others. Valerie has served as SHF’s policy analyst since 2021.

Valerie’s understanding of the value of freedom to make one’s own health care choices is not just academic. Health freedom has kept her boys alive and thriving. Her choice to have home births jump-started her advocacy for health privacy. Her eldest son survived a rare and deadly cancer because her family was able to navigate medical care while holding onto values that were sometimes at odds with recommendations.

Before joining SHF, Valerie specialized in health and parenting rights at her boutique law firm, especially surrounding birth and vaccine rights. She advocated for informed consent in health care and transparent food labeling in her state. She helped found the Birth Rights Bar Association and was honored to present their argument to the Delaware Supreme Court that midwifery is not the practice of medicine, in support of a trailblazing midwife.

“Health is the foundation of how we show up in this world to love, serve, and create. Americans are blessed to live in a country that gets stronger the more we protect fundamental rights, like informed consent and privacy, so individuals and families can thrive.”

Mary Katherine LaCroix

DIRECTOR OF DEVELOPMENT AND NONPROFIT ADMINISTRATION

Mary Katherine LaCroix became involved with SHF as a volunteer in 2019 when the religious exemption for childhood vaccines was at risk in her home state of New Jersey. She believes strongly that parents have the responsibility for their children’s health, education, and faith formation and that only they have the right to make medical decisions and manage their care.

She has worked in fundraising for more than 25 years at various educational, cultural, human services, and political organizations. A graduate of the University of Scranton, she holds a degree in History and English Literature.

Mary Katherine is thrilled to have this opportunity to work with and help grow SHF, believing that together we can achieve even greater impact in protecting our rights and caring for our loved ones. She enjoys spending time with her husband, two children and large extended family, as well as volunteering to support the special needs community.

“Parents are taught that they must trust the experts. That’s what we did, until we learned that the experts can be wrong and don’t always know what is best for your child. Parents should instead feel empowered by their natural, God-given ability to advocate and care for their children. SHF is here to give them the tools to do just that.”

Sheila Ealey

Political Analyst

Dr. Sheila Lewis Ealey is the founder and former director of the Creative Learning Center of Louisiana, a therapeutic day school for children who are on the autism spectrum or struggling with other nonverbal intellectual disabilities. The wife of a former U.S. Coast Guard Officer, she is also the mother of four children. Her son was diagnosed with severe autism spectrum disorder at 18 months. He is now a young man and considered moderate and emerging.

Sheila and her twins were featured in the documentary “Vaxxed.” She has traveled extensively, advocating for medical freedom. She continues to educate disenfranchised parents about their fundamental rights to religious and philosophical exemptions, their ability to live sustainably on a limited budget, and the importance of nutrition and biomedical interventions for optimum health with autism. She also writes individual homeschool curriculums for parents of children with autism or intellectual disorders. Sheila is a trustee for the Autism Trust, USA, and on the board of directors of Children’s Health Defense.

Over the past 20 years, she has educated herself to use natural healing modalities for the body and brain. Her formal education includes degrees in communication, special education curriculum, and a doctorate in Educational Leadership in Special Education. Sheila serves as an assistant content advisor and political analyst for SHF.

“It is not the Constitution’s job to protect our liberties, as it is not a philosophical document but a legal one. Its purpose is to limit the powers and authority of our federal government in hopes of preventing an intrusion upon our unalienable rights. We are obliged to maintain our government within its limits.”

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