Posts in LL Statements
Little Lobbyists Statement Opposing Justin Walker’s Confirmation

Little Lobbyists is a family-led organization advocating for children with complex medical needs and disabilities, and we are writing to strongly oppose the confirmation of Justin Reed Walker to the U.S. District Court for the Western District of Kentucky.

Walker’s position on the Affordable Care Act is clear. He called the Supreme Court’s decision to uphold the ACA “indefensible.” In one impassioned defense of Justice Kavanaugh, Walker wrote that “Kavanaugh’s thorough and principled takedown of the mandate was indeed a roadmap for the Supreme Court” justices who said that the ACA was unconstitutional. Walker’s nomination furthers the Administration’s attempts to accomplish through the courts what they could not through Congress: taking affordable health care away from millions of people, including children with complex medical needs and disabilities. President Trump explicitly stated he would nominate judges who would undermine the ACA, and by all accounts, Walker passes President Trump’s test.

Tragically, the stakes for the health and well-being of millions of Americans are all too real. The ACA has saved and improved the lives of our children with complex medical needs and disabilities with its ban on annual/lifetime limits, protections for those with pre-existing conditions, and coverage for essential health benefits, amongst other provisions. As countless medical and advocacy groups have made clear, the ACA yields improved health outcomes, especially in states that have accepted Medicaid expansion, and repealing the ACA would have harmful and potentially fatal consequences on patients and a devastating impact on the American health care system as a whole. If Walker is confirmed, he could spend his lifetime tenure attacking access to affordable health care in this country.

Upon review of his professional experience, we were shocked to learn that Walker has very limited trial experience. He has taken only one deposition in the entirety of his career and has never served as the sole or lead attorney in a case decided in court. Indeed, the American Bar Association rated Walker "not qualified."  Clearly, Walker is not being nominated based on any relevant experience; rather, he is being rewarded for his loyalty to a radical, partisan agenda, including his demonstrated hostility to the Affordable Care Act. His confirmation would mean decades of rulings undermining the rights of those most in need of protection, in favor of the wealthy and powerful. Millions of Americans, including our children, cannot afford that.

We urge all senators to oppose Justin Walker’s confirmation to the U.S. District Court for the Western District of Kentucky.

Little Lobbyists sign in front of the Capitol.

Little Lobbyists Statement Opposing Medicaid Block Grants

Little Lobbyists strongly opposes the state of Tennessee’s proposal to block grant Medicaid. On May 29, 2019, the Tennessee state legislature passed a bill requiring the governor to seek federal approval for a waiver to convert much of the federal funding for its Medicaid program into a block grant. This waiver proposal, released by the Governor this September, would limit the funding Tennessee receives to a predetermined set amount from the federal government – regardless of how much is actually needed by Medicaid recipients in the state. This limit would negatively impact 1.4 million Tennesseans currently covered by TennCare, the state’s Medicaid program. (1) Jeopardizing the health care and services for poor, elderly, and disabled Tennesseans; including children with complex medical needs and disabilities.

In addition to a block grant for Medicaid, this proposal gives the state broad authority to drastically limit the health care available to Medicaid recipients by allowing TennCare to change or reduce covered services without federal oversight. Therefore, if Tennessee only receives a set amount of funding for Medicaid through a block grant and the actual costs exceed that amount, the state would have to choose to make up the difference themselves or could instead limit health care with serious and sometimes deadly consequences. There could be a return to health care rationing, with Medicaid only permitting 14 days of inpatient hospital stays per year, potentially fatal for many children with complex medical needs who frequently require longer hospitalizations. Additionally, this proposal aims to create so-called “closed formularies” which severely restrict the number and variety of medications covered with no clear option for appeal. For many of our families, this is not a tenable situation. Given the complex needs of children with multiple disabilities and in many cases rare diseases, medical teams need to have the option to prescribe what works for the patient, not the state’s pocketbook. This proposed amendment takes treatment and therapy decisions out of the hands of doctors and puts it firmly into the hands of bureaucrats.

Tennessee has already experienced a significant loss in the number of rural hospitals, which rely heavily on Medicaid funds. By incentivizing cuts to Medicaid, block grants would inflict further harm on these communities and increase the risk of closure for the remaining rural hospitals and medical centers that many families in Tennessee, including those with children with complex medical needs, rely on for care. (2)

Until the summer of 2019, Tennessee was the only state in the country without a Katie Beckett Medicaid Waiver for children with complex medical needs to be cared for at home with their families instead of in an institution. Fortunately, after the heroic advocacy of the disability community, Tennessee passed this waiver. But now, just as families of children with complex medical needs and disabilities are celebrating its passage, the state is poised to effectively avoid enacting this policy. Block grants create an increased incentive to save money by making cuts to covered services and supports. In the past, Tennessee has taken drastic measures to deny access to Medicaid by freezing enrollment. (3) We have already seen the creation of closed formularies limiting the availability of medications, and it is likely that there will also be cuts to the long term services and supports our children will need when they reach adulthood. While we applaud the state of Tennessee for finally taking action to provide Medicaid coverage for children with complex medical needs and disabilities, we have grave concerns about whether they will actually receive the health care that they need to survive and thrive if this proposal goes into effect.

Little Lobbyists is a family-led group that advocates for the health care, education and community inclusion that children with complex medical needs and disabilities need to survive and thrive. This proposal puts our children’s lives at risk, and we strongly urge the state of Tennessee to reject this amendment and any future block granting of Medicaid. Our children’s lives depend on it.

Podium with a Little Lobbyists sign and mic in front of the Capitol on a clear summer day.

Podium with a Little Lobbyists sign and mic in front of the Capitol on a clear summer day.

(1) Hannah Katch, Judith Solomon, Aviva Aron-Dine, “Tennessee Block Grant Proposal Threatens Care for Medicaid Beneficiaries, Center on Budget and Policy Priorities;” , September 25, 2019

(2) Brett Kelman, “Tennessee’s Rural Hospitals are Dying Off. Who’s Next?” Nashville Tennessean, Published 10:00 p.m. CT May 15, 2019 | Updated 10:05 a.m. CT May 16, 2019

(3) Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, “Issues in Developing Programs for Uninsured Children: A Resource Book for States. TennCare,” March 2, 1998,

Joint Statement from Members of the Disability Community and Allies on Gun Violence Prevention Policy and Mental Health Disabilities

The recent mass shootings in our country have necessarily turned the spotlight on proposed policies and solutions at the legislative level. While the undersigned agree that public safety is paramount, the assumption that people with mental health disabilities, including those with perceived mental health disabilities, are inherently dangerous and that targeting them will solve our country’s gun violence problem is wrong. Talking points and legislation relying on those assumptions are counterproductive and only serve to further stigmatize people with mental health disabilities and the disability community as a whole. 

Despite data to the contrary, the President and some legislators have stated that people with mental health disabilities are the primary perpetrators of gun violence. The President has proposed institutionalizing people with mental health disabilities and is reportedly considering subjecting them to surveillance. Some legislators have similarly suggested that people with mental health disabilities should be the primary target of gun violence prevention efforts.We soundly reject this argument.  Studies have repeatedly shown that people with disabilities, including mental health disabilities, are far more likely to be victims of gun violence than perpetrators.  In fact, recent studies demonstrate that only 4% of gun violence is connected to mental health disabilities.  Mental health disabilities are not accurate predictors of violence, a fact recognized by the American Psychological Association, among others, and should not be treated as such. Legislation that targets people with mental health disabilities will not be effective in reducing gun violence. Falsely blaming people with mental health disabilities for violence will stigmatize these individuals, violate their right to privacy, and will likely dissuade some people from seeking help at all. 

All Americans, including people with disabilities, have a civil right to live in their communities and not be segregated or imprisoned simply because they have a disability. Building more institutions, as the Administration proposes, unjustly threatens the civil rights and freedom of people with mental health disabilities while doing nothing to reduce gun violence in this country.  Other proposals aimed at identifying students with disabilities at a young age as potential threats only serve to further isolate and stigmatize students. This is neither helpful nor effective in increasing safety or reducing gun violence and will ultimately harm those with mental health disabilities as well as the broader disability community.  

The simple fact is that other countries around the world have just as many people with mental health disabilities, but they do not experience gun violence at the same magnitude as the United States. The problem is only exacerbated by systemic racism and hatred. Our country is faced with a rise in hate crimes targeting marginalized communities and an increase in racially motivated mass shootings in recent years. Hate and racism are not mental health disabilities, nor should they be treated as such. There are no medical providers, procedures, or medications that exist that can treat a person's hatred. Gun violence is not clinical in nature—it is a societal problem.  

It is an act of prejudice to use people with disabilities as scapegoats for the increasing incidences of mass shootings and acts of mass violence in this country.  Ultimately this will do nothing to curb the epidemic of gun violence in our nation. We will not accept or support any legislation that sacrifices the civil rights of people with disabilities in exchange for the appearance of action on gun violence.   Effective reform can and should be accomplished without compromising the civil rights of people with disabilities. We call upon all of our legislators to condemn this dangerous rhetoric and refute any related legislative proposals that will put the lives and freedoms of  Americans with disabilities at risk. 

Signed in Solidarity,

ADAPT Montana

Advocacy Unlimited, Inc.

Alabama Disabilities Advocacy Program

Alliance Center for Independence (New Jersey)

Alliance for Excellent Education 

Aloha Independent Living Hawaii

American Association of People with Disabilities

American Civil Liberties Union (ACLU)

Arizona Center for Disability Law

Association of University Centers on Disabilities

Atlantis Community, Inc (Colorado)

Autism National Committee

Autistic Self Advocacy Network

BasicNeeds US

Bazelon Center for Mental Health Law

California Association of Social Rehabilitation Agencies

Center for Public Representation

Children's Mental Health Network

Coalition of Texans with Disabilities

Colorado Cross-Disability Coalition 

Colorado Developmental Disabilities Council

Connecticut Cross Disability Lifespan Alliance

Connecticut Legal Rights Project, Inc. 

Connecticut State Independent Living Council

Counseling DIRECTions, LLC (Arizona)

Depression and Bipolar Support Alliance

Democratic Disability Caucus of Florida

DIRECT Center for Independence (Arizona)

Disability Law Center (Utah)

Disability Law Colorado

Disabilities Resource Center of Siouxland (Iowa)

Disability Rights Arkansas

Disability Rights California

Disability Rights Center - New Hampshire

Disability Rights Connecticut

Disability Rights Education & Defense Fund (DREDF)

Disability Rights Florida

Disability Rights Mississippi

Disability Rights New Jersey

Disability Rights New York 

Disability Rights North Carolina

Disability Rights South Dakota 

Disability Rights TN

Disability Rights Vermont

DQIA:Disabled Queers In Action!

Family Network on Disabilities

Georgia ADAPT

Gift of Voice 

Healthcare Rights Coalition

Hon. Tony Coelho, Author of the Americans with Disabilities Act

Illinois/Iowa Center for Independent Living

Keep the Promise

Little Lobbyists

Mental Health America

Mental Health Connecticut

MindFreedom International

National Association of Councils on Developmental Disabilities

National Association of County Behavioral Health & Disability Directors

National Association of School Psychologists

National Association of Secondary School Principals

National Center for Learning Disabilities

National Coalition for Mental Health Recovery

National Council on Independent Living

National Center for Special Education in Charter Schools

National Disability Rights Network 

National LGBTQ Task Force Action Fund 

National Mental Health Consumers' Self-Help Clearinghouse

New Jersey Association of Mental Health and Addiction Agencies

New York Association of Psychiatric Rehabilitation Services

Northern West Virginia Center for Independent Living

Oregon Mental Health Consumer Psychiatric Survivor Coalition 

Placer Independent Resource Services (California)

Pennsylvania Action: Protecting Disability Rights

Pittsburgh Center for Autistic Advocacy (Pennsylvania)

Psychiatric Rehabilitation Association


Silicon Valley Independent Living Center (California)

Southwest Center for Independence


Texas Democrats with Disabilities

Texas Parent to Parent

The Alliance for Excellent Education

The Arc of the United States

The Coelho Center for Disability Law, Policy and Innovation

The Leadership Conference on Civil and Human Rights

The Statewide Independent Living Council of Illinois

Torah Trumps Hate

Vermont Center for Independent Living

Vermont Coalition for Disability Rights

1 Kim, Sarah, “The Dangers of the Mental Health Narrative when it Comes to Gun Violence,” Forbes,, August 7, 2019.

2 Metzl, Johnathan M., “Mental Illness, Mass Shootings, and the Politics of American Firearms,” 105(2) Am. J. Pub. Health 240-249 (2015) available at

3 American Psychological Association, Statement of APA CEO on Gun Violence and Mental Health, August 5, 2019,; American Psychological Association, Resolution on Firearm Violence Research and Prevention (2014)

4 American Psychological Association, Resolution on Firearm Violence Research and Prevention (2014) (“policy makers have responded to public apprehension about the role of severe mental illness in mass violence towards others in ways that result in policies and practices that further stigmatize persons with serious mental illness and may deter them from engaging in needed psychological or other services”).

5 ADA.Gov About Olmstead,

6 Barnes,Bethany, Targeted: A Family and the Quest to Stop the Next School Shooter, The Oregonian , June 24, 2018

Little Lobbyists Statement: Protections under the Medical Deferred Action Program must be reinstated

Little Lobbyists strongly condemns the Administration's cruel and inhumane decision to terminate protections under the Medical Deferred Action program – a decision that, if left in place, will lead to the unnecessary deaths of vulnerable children and adults.

The United States has a proud history as the proverbial shining city on a hill, especially when it comes to expert medical care for complex and rare medical needs. Patients come here from around the world seeking our doctors’ expertise and medical technologies when they have nowhere else to turn. This program allows a very small number of patients with serious medical needs to remain legally in the U.S. in order to access life-saving treatment that is not available in their home country; these patients include children and adults with cancer, cystic fibrosis, epilepsy, rare genetic syndromes and other catastrophic illnesses. In short, deportation of these individuals to their home country is tantamount to a death sentence.

We reject the scarcity argument that providing care for one group amounts to less care for another. In fact, in many cases, these patients are providing doctors with more opportunities to learn about rare syndromes and conditions, allowing the development of treatments that will help everyone – American citizens and non-citizens alike – with similar conditions now and in the future. The Medical Deferred Action Program is a reflection of our American values of compassion and ingenuity, as we use and grow our talents and expertise to help others.

As families who advocate for and with children who have complex medical needs and disabilities, we fight for all children. There is no such thing as other people’s children. The protections under the Medical Deferred Action Program must be reinstated, and we call on everyone to raise their voices to ensure the Administration does the right thing.

For more information:

Podium with Little Lobbyists logo in front of the U.S. Capitol
The Power of Medicaid (by Jeneva and Robert Stone)

 The following is a transcript of remarks  given at a Press Conference in the U.S. Capitol, hosted by members of the Senate and Protect Our Care, at the closing of Medicaid Awareness Month on April 30, 2019


I’m Jeneva Stone from Maryland and I’m a member of Little Lobbyists, a group of families advocating for children with complex medical needs and disabilities.

This is my son Rob. Rob recently graduated from high school, and he has plans to be an artist, writer and disability advocate. Rob enjoys baseball, movies and museums. He’s a huge Game of Thrones fan.

Rob also has a rare disease, and he’s one of 35 million Americans for whom Medicaid has been a lifesaver. Before Rob qualified for a Medicaid waiver in 2012, our family had been through 6 different private insurers—trying to avoid hitting annual and lifetime coverage caps—and over a quarter of a million dollars in out-of-pocket medical expenses.

Unlike private insurance, Medicaid is designed for people with disabilities: It provides all 30 boxes of medical supplies Rob needs every month. His specialty medications are covered. His therapies are covered.

I don’t have to fight with an insurance company to get Rob the customized wheelchair he needs, which retails for $8,000 to $10,000 without Medicaid.

Why does Rob need that wheelchair? So he can get out in his community, just like his peers—going to Orioles games and the movies, and even having a beer now that he’s old enough. Rob’s Medicaid coverage provides home nursing and personal attendants so he can live in his community, where he belongs, with supportive neighbors and friends.

Because of Medicaid, Rob can live at home with his family, rather than in a nursing home where no 21-year-old young man belongs. Rob’s sister will be home from college next month, and he’s looking forward to hanging out with her again.

Before Medicaid, medical bankruptcy was a real possibility for my family: Nothing prepares you for the staggering costs of raising a child with complex medical needs. Savings, family money, even selling your home cannot cover two decades worth of multiple specialists, medical equipment, prescriptions, hospitalizations and surgeries, therapies, home modifications, and home nursing.

Survive and thrive. That’s what Medicaid gave Rob, and that’s what Little Lobbyists wants for all children with complex medical needs and disabilities—the chance to grow up to be healthy adults. Rob, now 21 years old, is living proof of the power of Medicaid.


The author Jeneva and her son, Robert. 

The author Jeneva and her son, Robert. 

All must mean ALL – Little Lobbyists Statement on Universal Health Care Policy (STATEMENT)

Little Lobbyists believe that health care is a human right. We also believe all health care policy in the United States, especially policies designed to create a system of universal health care, must include appropriate coverage for the health care of people with complex medical needs and protections for the civil rights of people with disabilities. By doing so, legislators can finally ensure that every American has access to health care. All must mean ALL.

Below, please find a summary of the top three areas of concern for our community regarding the proposals for universal health care policies.

Long Term Services and Supports

  • In addition to traditional health care services, provision for Long Term Services and Supports (LTSS) MUST be included in any and all new health care policy in order to provide adequate support for, and protect the civil rights of, individuals with disabilities and complex medical needs.

  • Priority must be placed on providing LTSS services in the community and NOT in an institutional setting; we must reverse the existing, systemic “institutional bias.” Home and Community-Based Services (HCBS) provide person-centered support for daily life activities and enable people with disabilities to remain in their homes and communities and engage in all aspects of everyday life - family, school, employment, and more. HCBS are more cost effective, provide better outcomes, and preserve the freedom, dignity, and civil rights of individuals needing care.

  • Any system must recognize and support the central role family caregivers play in planning for and providing Long Term Services and Supports.

  • For more information, please refer to the principles on including LTSS from the Consortium for Citizens with Disabilities.

Continuity of Care

  • Sweeping changes to the way health care is delivered in our country will be disruptive. However, no change should disrupt the access to, or quality of, care for individuals with complex medical needs. Being able to continue seeing trusted specialists, access care centers, and obtain vital medications, equipment, supplies, therapies, private duty nursing and more, is a matter of life and death.

  • In the current system, Medicaid coverage for individuals with complex medical needs and disabilities is inconsistent and highly variable from state-to-state, even from individual-to-individual within states. It is essential that this inequity be eliminated to provide relief for those not yet covered without compromising the coverage of those who currently have their needs fully met.


  • We need to increase support for research and development of treatments and cures for illnesses and diseases from the very common to the exceedingly rare. The people who need these treatments and cures must also be able to afford them.   

  • People with complex medical needs use a wide variety of medications, some common, some less so. These diverse needs must be adequately considered when determining the list of prescription drugs comprising any formulary. Appropriate provisions should also exist for those needing medication not included in the formulary.

  • For the majority of pharmaceuticals, when research and development is predominantly funded by public dollars, we believe Medicare/the Government must be able to negotiate with drug companies to secure reasonable prices and prevent the price gouging of medications, like insulin and epipens. The recommendations on making medicines affordable developed by the National Academies of Sciences, Engineering, and Medicine offer some valuable suggestions.

  • For pharmaceuticals developed for rare/orphan disease, some of which are funded through “venture philanthropy” and other private sources (like medications for Cystic Fibrosis and targeted genetic medicines for cancers), a carefully considered approach must be developed to effectively support and incentivize innovation while controlling costs for this small, very diverse, rare patient population.

Please note: at this time, Little Lobbyists is not endorsing any specific plan or policy. This document is meant to outline our concerns and provide guidance for discussion regarding proposals for all new universal health care legislation.

Little Lobbyists Statement on Short Term Limited Duration Insurance CMS-9924-P (STATEMENT)

Submitted to April 19, 2018

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-9924-P

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  

America badly needs changes to health care laws and regulations that expand access to care and decrease costs; however, these changes must not come at the expense of necessary care and financial protections for vulnerable children and their families.  Unfortunately, that is just what the proposed rule would do. By allowing “short term” insurance plans for up to a year in length that would not contain basic protections provided by the Affordable Care Act – including the prohibition on discrimination against individuals with preexisting conditions and the prohibition of annual caps on medical care – children with complex medical needs across the country, and their families, will be harmed in multiple ways.  

As is the case with many medical conditions, parents of children with complex medical needs are frequently not in the position to know about and anticipate the care their children will need, through no fault of their own.  For such families, the protections afforded by the Affordable Care Act are literally life-saving. Children born prematurely, or with other complex medical needs, often require extended hospital stays with medical care billed into the millions of dollars.  The need for comprehensive medical care frequently continues long after they are finally discharged home. The protections in the Affordable Care Act ensure that insurance providers cannot deny coverage for medical care because their medical bills reach a certain threshold.  It ensures that they have access to lifesaving prescription drugs. It ensures that the preexisting conditions these children are born with will not prevent their ability to access care into the future.

The “short-term” insurance plans proposed in this rule eviscerates those protections.  Families purchasing such plans for health coverage, whose children subsequently encounter medical difficulties, will soon find these insurance plans to be worthless – failing to cover the specific, life-saving care their child needs, and taking coverage away completely if care becomes too expensive.  On top of the trauma and stress that comes with a sick child, these families will face financial ruin as well. While our focus is on medically complex children, this outcome is no less true for any individual who encounters unforeseen medical complications, be it through sickness or an accident.

The damage would not be limited to those families buying short-term plans created by this proposed rule.  For those families that remain in ACA-compliant plans to ensure they receive the care their child needs, the cost of insurance premiums would increase, leading to financial hardship – realities that the proposed rule explicitly concedes.  Once again, children and families who are most in need of care and financial protection will be the most negatively affected.

As we stated at the outset, America’s health insurance system needs fixing.  Access to care must be expanded so that all Americans can receive the care they require, and the cost of this care must be controlled so that financial hardship and bankruptcy due to medical care is reduced to a terrible relic of bygone days.  There are ways of meeting this vital goal. Americans demand it. Unfortunately, this proposed rule, which provides a path to less comprehensive care and higher medical costs for our nation’s most vulnerable, is a harmful leap backwards.

On behalf of the millions of children with complex medical needs and their families, we ask that the proposed rule be rescinded and replaced by one that truly sets access to comprehensive and affordable health care for all Americans as its cornerstone.

Little Lobbyists’ Letter to U.S. Senators on the Graham-Cassidy health care repeal bill

Below is a copy of the letter that we have been delivering to U.S. Senators regarding our opposition to the Graham-Cassidy bill:


September 18, 2017

Dear Senator,

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  We have visited your office previously and hand-delivered the stories of medically complex children in your state whose health and future would have been jeopardized by the legislation under consideration at the time.

We write again because the pending Cassidy-Graham health care bill poses similar danger to the millions of medically complex children in this country, thousands of whom live in your state.  We ask that you stand up to protect our children, and demand that Congress do the same.   

Our current health care laws can and must be improved, about this there is no debate.  However, the Cassidy-Graham bill departs from recent good faith, bipartisan efforts and attempts a massive upheaval of our health care system without input from policy experts or those who would be most affected by its provisions.  In particular, the Cassidy-Graham bill undermines three protections in current law that are vital to the health and well-being of medically complex children and their families:  

  • Decreased Medicaid funding through “per capita caps” and “block grants”. Private insurance frequently does not cover home/community-based care (such as private duty nursing) and therapeutic care. Medicaid fills this gap, which allows medically complex children not only to live at home, but to thrive. Cassidy-Graham’s upheaval of Medicaid will cut billions of dollars nationally from the program relative to current law, with no guarantees that the funds must be spent on the same population. Under such funding restrictions, optional Medicaid programs, such as the Katie Beckett Medicaid waiver program created by Ronald Reagan to help families care for their medically complex children at home, will likely be among the first eliminated. In short, under Cassidy-Graham, the vital safety net that Medicaid provides our children is slowly pulled away, with families like ours left to worry constantly whether it will be there when they need it.

  • Eliminating the ban on annual/lifetime limits. Many of our children accumulated millions of dollars in medical bills in their infancy before they ever left the hospital. Under the ACA, insurance companies were prohibited from kicking our children off of insurance plans when their care reached a certain dollar amount. Cassidy-Graham would allow states the ability to waive these protections. This means that parents across the nation sitting bedside in Neonatal Intensive Care Units will once again have to worry not only about whether their child will survive, but also whether the hospital stay will leave them bankrupt.

  • Eliminating the ACA’s pre-existing condition protections. Medically complex children are frequently born with multiple pre-existing conditions. Protections against discrimination on the basis of these conditions give us the security that our children will not one day be denied affordable insurance because of conditions they were born with. That security is stolen by the Graham-Cassidy bill, giving states broad authority to waive these protections. This is contrary to the Republican Party’s own platform, which provides that “individuals with preexisting conditions who maintain continuous coverage should be protected from discrimination.”

We have heard politicians over the past few days tell us that the Cassidy-Graham bill will increase “flexibility” and “choice” for Americans.  That is flatly untrue for our families.  Rather, the bill’s provisions will fundamentally disrupt the safety net that our families depend on, likely leaving us only one unthinkable choice: incur debt far beyond our means, or forego medical care that will keep our children alive and able to achieve their God-given potential.

As we said at the outset, our nation’s health care laws can and must be fixed.  But it is unjust, immoral, and contrary to any reasonable meaning of “pro-life” to pass a health care law that makes it harder for medically complex children to access the care they need to survive and thrive.  Our children have done nothing wrong.  They do not lack personal responsibility; indeed, they show more strength, bravery, and resiliency in a single hospital visit than many people do in their entire lives.  They are just kids who, through no fault of their own, need a little help.  

You can help them now.  Stand with our children.  Hear their stories.  Work with us to ensure their access to health care is not diminished.  We will make ourselves available anytime of any day to discuss our concerns with you in person, and to assist in any way we can toward the goal of a health care system that works better for all Americans. 


Elena Hung
Michelle Morrison
Co-Founders, Little Lobbyists

Austin Carrigg, Anna Kruck Corbin, Laura LeBrun Hatcher, Ben Zeitler
Steering Committee, Little Lobbyists