Posts in LL Statements
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.

Pharmaceuticals

  • 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.


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

Submitted to www.regulations.gov/docket?D=CMS-2018-0015 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:

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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. 

Sincerely,

Elena Hung
Michelle Morrison
Co-Founders, Little Lobbyists

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