Affordable Healthcare is the Bedrock of American Self-Reliance (By Jeneva Stone)
The Author’s son, Robert.

The Author’s son, Robert.

The spring of 2010, when the Affordable Care Act was signed into law, was preceded by a hard winter for my family. In February, two major snowstorms hit the DC area where we lived within one week, dropping thirty to fifty inches of snow. They called it Snowpocalypse. During the height of the second storm, I slipped out a bedroom window onto our long porch roof, afraid it might collapse from the weight and knowing we couldn’t afford to repair it.

This was the accessible home we’d built for our son Robert, a medically complex child disabled due to an undiagnosed disease. We’d been chasing a diagnosis and treatments for him for 12 years. I bit the shovel in deep and pushed the heavy snow forward, watching it cascade into piles on the front lawn. Snow clung to my eyelashes, my vision spotted with haloes from the street lights. As fast as I shoveled if off, it accumulated.

Struggling with health insurance in the days before the ACA had been much like shoveling my way through an unending financial storm. My family had had 6 different health insurers in those dozen years, always one step ahead of bankruptcy by medical expense, whether due to annual caps, lifetime caps, or the tens of thousands of dollars we’d spent on co-pays, medications, uncovered items, and other out-of-pocket expenses. I’d taken a job I didn’t really want as an editor for a federal advisory committee, just so we could have the golden ticket: federal health insurance.

But I wanted more: The ability to live how I wanted to live. The freedom to do what was best for my family. That meant choosing where we wanted to live, pursuing work for the love of the job, not the health insurance tied to it, and knowing my son could be insured even if a good work opportunity didn’t offer health benefits.

During the 2008 campaign, Obama had promised to deal with our country’s health insurance crisis, yet during the summer of 2009, his opposition had gotten the upper hand: health insurance reform meant no one would be able to choose their doctor and the federal government would establish death panels. I’d watched a town hall meeting at which a senator from Oklahoma heard a sobbing woman describe her brain-injured husband’s eviction from a nursing home when his benefits expired. He had a feeding tube, and she was now expected to retrain him to drink and eat on her own. The senator replied, What’s really missing here is the failure of neighbors to help others who need our help. The audience burst into resounding applause.

Self-reliance, rather than government hand-outs, was the yardstick of freedom that audience understood. I’d learned self-reliance growing up in 1970s Vermont, when the state was still staunchly conservative. That mentality from my youth had me futilely shoveling snow off my roof in the middle of the night, without considering how easily I might fall off. We were always in danger of falling off and losing everything.

Our neighbors had helped us as they could, but I relying on them would be just another form of dependence. None of them had the money or expertise it took to pay for my son’s healthcare or assist with his home medical needs.

Robert’s illness taught me that self-reliance and freedom were not the same thing. If you’re free you can go anywhere and do anything, right? But you’d better not have anyone depending on you. Janis Joplin sang, “Freedom’s just another word for nothing left to lose,” yet in my life, I’d had everything to protect and keep. She and Bobby McGee were drifters, criss-crossing the U.S. That’s not the type of citizenship most of us experience, even if we admire its free-wheeling nature.

Freedom and self-reliance are a delicate balance. There are few opportunities without a solid base of support: some self-reliance, some neighborly, and, yes, some from the government. It is our government; it is we the people who form it. Our government can provide a platform for each of us to seek freedom. Let me put it this way: If I had certainty with healthcare, then I could take other chances. Then we could chase a better way of life—the American dream.

That spring of 2010, the ACA proceeded to a final vote, and Speaker Pelosi struggled to keep her caucus in line. Bart Stupak of Michigan was the final hold-out. In his floor speech, Stupak said that he wanted women to know that if they had a child and that child had medical problems, he or she would be entitled to medical care. I cried. Stupak understood what my family had gone through, all that long winter. Freeing my child meant freeing me and my family.

The ACA remains under attack today, snowflake after snowflake piling up and threatening to keep all of us in a permanent winter. Let’s not allow the critics to snow us in. Let’s move forward, once again, to a new spring of improved healthcare-for-all, so we can each manage our competing responsibilities and free-wheeling dreams.



Laura Hatcher
From Parent to Ally: Listening to the Experts on Autism (by Daya Chaney Webb)

The greatest tragedy that can befall a child with Autism is to be surrounded by adults   
who think it’s a tragedy”.
~ Ellen Notbohm

Raising an Autistic child can change the very heart of who we are as parents, and as people. It’s a life that provides deep rewards, a broader perspective of the world, and an unspoken fellowship with other parents who can understand and connect with one another from across the aisles of Walmart – and hopefully across the aisles of political parties, as well.

This life can also be overwhelming. It can be easy to get tunnel vision when you’re far into IEP preparation, therapies, and appointments; alongside the day-to-day challenges of life for our kids with Autism. This parenting gig (a different job than most!) requires a lot of focus: focus on today, tomorrow, this year, maybe even five years from now. Navigating the uncertain terrain is intense, scary, and isolating. It’s exhausting.  

Parents of Autistic children often travel a modified timeline for developmental milestones. We try not to compare our children with the kids of friends and neighbors, but I know from experience it can be hard not to filter the comparative ease of “neurotypical” experiences through an alternative lens of emotion and insecurity, self doubt and exclusion.

We’re told we need to learn to be flexible in our expectations. We talk about our need to adjust our dreams for our kids according to their diagnosis.

Knowing this, why would anyone be surprised to learn that some Autistic adults have feelings of resentment toward parents? That there’s anger, sadness, disappointment, suspicion, and distrust? If you think about it, it makes sense – for decades we work on care plans meant to “fix our kids” and help (force) them to fit into a world that my own autistic son, Sam, tells me feels “sharp and jagged” to him sometimes.

It would be easy for our kids to get the feeling that we think they are broken.

It should be easy to see that our alternative lenses don’t always show us an accurate picture of “best practices” for our children’s therapies, education, and more. That after years of traumatic events for our families, our perception as parents and protectors might be somewhat skewed.

For example, I was truly surprised to learn some adults in the Autism community want to be referred to as Autistic. I still struggle with this – as a mom, my gut feeling is that I want more for my child than this “label,” which feels like a limitation to me. I wonder why I can’t say artistic or athletic instead? Because my son is both of those things, too.

But maybe it’s the viewpoint of neurotypical parents (like me) - who’ve seen Autistic as something lesser in comparison to traits like artistic or athletic - that’s contributed to an impasse between the worlds of parenting someone with Autism and being someone with Autism. We lack the insight needed to accurately understand the full Autistic experience.

I first learned about the negative feelings some Autistic adult advocates have towards parent advocates when I joined Little Lobbyists, who’ve been advocating alongside self-advocates since they began. Little Lobbyists know our kids with disabilities will grow up to be adults with disabilities. We want to empower them to be the next generation of self-advocates, and to do that we know they need role models who are themselves disabled.

When you get a tip for who to bet on in a horse race, it’s most valuable (and accurate) when it comes directly from the “horse’s mouth”- the jockey or the trainer. Moving forward, I’ve decided to take advice straight from the most reliable source.

Only an Autistic person can be an Autism expert. I can trust that.  

“You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.” – Julia Bascom, Executive Director of the Autistic Self Advocacy Network


The author, Daya, with her son Sam.

The author, Daya, with her son Sam.

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. 

#StopTheShock (by Laura Hatcher)

The following is the transcript from remarks given on 4/24/2019 at the Stop The Shock Washington D.C. Wait-in hosted by The Autistic Self Advocacy Network.

Hello, my name is Laura Hatcher. My son, Simon, and the rest of our family are members of Little Lobbyists. We support Simon in his self-advocacy as a person with disabilities and complex medical needs, and we advocate together to create the kind of future all our families deserve - a future that does not include electrical shock for people with disabilities.

I’m also a college professor and creative consultant and I mostly work from a home office. Sometimes it gets a bit too quiet, so I put the TV on for background noise while I work. One morning fairly recently I caught a bit of a talk show – it’s called “The Doctors” – and I was surprised to hear one of their topics for discussion was the electric shock “therapy” of people with disabilities in use at the Judge Rotenberg Center.

We don’t often hear issues of disability rights in mainstream media so I was pretty interested to see how this discussion would go. As the host introduced the segment and the camera panned the audience I was glad to see the co-hosts and audience members were genuinely surprised and appalled to learn that this barbaric abuse is happening here, in the United States, in 2019.

Then, following the formula of shows like this -- they went on to question the so-called “experts” to learn more.

First, they asked a psychiatrist from a well known university about the practice, who firmly denounced it as torture and pointed out that there are myriad other far better treatment options available to individuals with disabilities and their families.

Next, predictably, they asked a representative from the Judge Rotenberg Center why - if the first specialist was correct -- the JRC persisted in its use of electric shock devices.

The JRC Clinical Director summarily dismissed the United Nations report stating that the use of Gradual Electronic Decelorators (GEDs) is torture. He claimed, that despite evidence to the contrary, they no longer really hurt people. He even claimed that they’d had some success with really tough cases, for problems nowhere else could deal with. As he spoke, I noticed that the way he talked about the people he was supposed to be caring for was dehumanizing. To him, they were cases not community members. They were big, scary problems -- not real, vulnerable people.

The co-hosts and audience members listened to this exchange with furrowed brows. They acknowledged that this was indeed a difficult problem. And then they cut to commercial.

I hoped that, when the show resumed, they’d have included a person with disabilities on their panel to respond. To provide a much needed first hand account of the damage abuse masked as discipline or, more insidiously, therapy, has. To explain that it does not heal anything or anyone. Instead it causes fear, anxiety, and lasting trauma.

But that didn’t happen. Instead they started on a new segment about mites living in eyelash extensions.

“The Doctors” never asked a person with Autism, like my 13 year old Little Lobbyists Simon, who has complex medical needs and physical and intellectual disabilities, what they really needed to understand. They never asked families like mine if the JRC clinical director was disconnected and dehumanizing in his assumptions about our loved ones.

If they had, they would have learned that just being secluded by an aide in school when Simon was in the first grade led to months of acute separation anxiety for him - communicated to us through sudden, painful meltdowns; and to years’ of guilt, fear, and an inability to trust outside caregivers for us, his parents who love him.

They might have learned that many families like mine are desperate, but not in the way described by the JRC clinical director. We are desperate to have the lives of our loved ones valued. To be counted as full members of our communities - the sort of people whose opinion would be worth getting when discussing their lives on a mainstream talk show.

No, they never asked. So we just have to tell them.

We need everyone -- even the talking heads, doctors, and so-called specialists – to recognize that people with disabilities are people and that “behaviors” are communication. We need them to be aware that there are insufficient resources to support people with disabilities in their homes and communities. We need everyone to understand that treating people to improve their health and well-being is NOT the same as shutting them away and shocking them into submission.  

We are here to remind the FDA that every day they delay banning the use of electric shock another person is subjected to treatment the United Nations has classified as torture. We are here to remind the United States of America that the imprisonment and torture of disabled people is wrong.

I sometimes think our government administrators have a lot in common with talk show hosts. They pan the audience for reactions but rarely ask for the input of true experts -- the people impacted. They observe commercial breaks and hope we will simply tune out.

But we cannot change the channel. I cannot bear the thought of a person like my son being tortured for simply being who they are by anyone too lazy, incompetent, or cruel to understand their needs. I know you can’t either.

People with disabilities are still being tortured today. Every moment we are waiting for the FDA to ban this practice is a moment too long. It is time to stop the shock.

To learn more, visit: www.autisticadvocacy.org/stoptheshock/

[Image description: An illustration of a construction site-style metal warning sign. At the top, white text on a red background reads: ATTENTION! Below that is large text which reads: “PEOPLE WITH DISABILITIES ARE STILL BEING TORTURED AT THE JRC.” Next to the text is a warning symbol depicting a person being electrocuted against a yellow triangle background. Below the warning symbol is text reading #StopTheShock. There is a post-it note on the sign that says #WeAreStillWaiting.]

[Image description: An illustration of a construction site-style metal warning sign. At the top, white text on a red background reads: ATTENTION! Below that is large text which reads: “PEOPLE WITH DISABILITIES ARE STILL BEING TORTURED AT THE JRC.” Next to the text is a warning symbol depicting a person being electrocuted against a yellow triangle background. Below the warning symbol is text reading #StopTheShock. There is a post-it note on the sign that says #WeAreStillWaiting.]

From Parent, to Advocate, to Leader (by Jessica Fox)
Jessica Fox and her daughter Claire, age 4

Jessica Fox and her daughter Claire, age 4

I am a mom.

When my daughter was born with a heart condition requiring a high level of medical care, I became her advocate.

When I realized there were many kids like her, unable to access the resources they need to survive and thrive, I became a leader.

The truth is, I never thought I would be a health care expert meeting with legislators in our state Capitol, but now I am. Because I have to be.

Too often, our policies on health care are made by people who do not understand what it's like to care for a child who has had more doctor's appointments than play dates. That is why I started speaking up and fighting to change our state law.

I started speaking up because of my daughter, Claire, a very happy four-year-old child. She loves to tease her siblings and will pull out all the stops to make them laugh. She loves music and she loves to play dress up. She currently attends an inclusive pre-K program, where she signs her best friend’s name “poppy” by using sign language for “bubble".

In many ways, she’s just a kid living her best life; but unlike most kids, she has spent more than her fair share of time in hospitals, racking up millions of dollars of medical bills in the first two weeks of her life.

We were very fortunate to be covered by my employer’s commercial insurance plan to pay for her medical care. In addition, due to Claire’s extended hospitalization, we also qualified for our state’s Medicaid plan, called TennCare, as a secondary policy. This was necessary because as great as our insurance was, it did not cover everything Claire needed, like her therapies, medical equipment, and surgeries.

Then, one day, just prior to Claire’s 4th birthday, we lost her Medicaid because we no longer qualified. Just like that. I appealed not once, but twice and lost. How could a disabled child be denied access life-saving medical care in America?

I sat in the grocery store parking lot crying one day, and I knew I had to do something.

I have to confess that a year ago, I had no idea who my State Representative was. We all start somewhere. I began a letter writing campaign and asked everyone I knew to join me.

I connected with groups like Little Lobbyists, a family-led organization advocating for children with complex medical needs and disabilities, where I felt encouraged and a sense of community. I made calls to my State Senator. I reached out to several agencies. I attended health care forums. I took notes as candidates campaigned for the mid-term elections.  After tucking my kids in bed, I spent my late nights reading and learning about our state government. I learned about the Katie Beckett program, a Medicaid waiver program that allows medically complex children to live at home with their parents instead of an institution, by waiving the parent’s income. I learned that Tennessee was the only state in the country without this program.

I told my story in several newspaper and television interviews. This past October, my daughter’s face was the front-page center piece article of our local newspaper, talking about why we need the Katie Beckett program.  I joined four other families with children like mine, and we took off to our state Capitol. That day, my husband and I took our daughters to meet various lawmakers who agreed to sponsor a bill that we hope to become a Katie Beckett program in Tennessee.

I remember we sat in a legislator’s office, next to Claire as she rocked in his rocking chair. When you show up with your kid at the state Capitol, legislators are forced to see them with their own eyes. Claire is not a number or statistic; she’s a real child.

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Our bill is now progressing in Tennessee’s House of Representatives. This bill, if passed, will ensure Claire can access the medical care she and so many other kids need and for us, that means we give them every fighting chance to reach her their highest potential.

This is why we need to engage our lawmakers. They work for us. They need to understand how policies affect our lives. We are the experts on our children. We are the experts on policies that affect our children.

We are constituents. We are real people, who care about our loved ones. We are spouses and siblings and friends and neighbors, and yes, we are parents. It is time for us to speak up and lead.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

JessicaFoxUnrig.jpg
Confronting my own ableism as the parent of a child with complex medical needs (by Tasha Nelson)

The realization hit hard, like a punch to the gut. Almost as hard as the day I learned my son has Cystic Fibrosis, an incurable fatal illness. I’m nearly 39 years old, have always considered myself an ally to marginalized communities, and have loved all people of all varieties all my life. I’m aware of racism, sexism, and ableism - discrimination against people with disabilities. But what I wasn’t aware of, until today, is that I myself have been an ableist.

Why am I calling myself an ableist? After all, I’m part of Little Lobbyists, a group of caregivers who advocate for kids with complex medical needs and disabilities, to ensure lawmakers understand our needs. Yes, I just said “our needs” and you’re probably wondering how I could be ableist? Good catch.

Recently, Little Lobbyists leadership were discussing how we define who Little Lobbyists advocates for. Within this definition, there was one sentence I was completely offended by. It read: “Kids with complex medical needs have disabilities.”

The degree of offense I felt was one of the greatest I’ve experienced. This one sentence and my reaction to it rocked my world. (I want to acknowledge here that I have benefitted from a very middle-class, white-privileged life. I realize, those reading this who have endured far more discrimination than I ever have, might be spitting out their coffee and laughing at my ignorance as they read this, and rightly so. I fully understand my experience is not remotely close to what so many others face every single day. For my part I continue to strive to do better.)

During the conversation that followed about this sentence I indicated that, though my son is medically complex, I in no way identified him as disabled. I could tell the other moms, who do identify their children as having disabilities, were surprised by this. We’re all Facebook friends, so they have a view into my son’s medical needs. I suspect much of what they see is similar to their own experience, and so they assumed we also identified as part of the disability community. We had a positive and open exchange about why I didn’t think my son was disabled, they listened to my opinion and didn’t push me to identify differently.

But since that day, I have found myself frequently revisiting that conversation and asking myself why don’t I identify my son as disabled? Is it because he has no cognitive disability? No visible physical disability? Because he doesn’t qualify for disability services under SSI? Could it be related to the first, and often repeated, thing the CF care team said to me when he was diagnosed – “your baby is a normal baby, who happens to have Cystic Fibrosis?” Is it because of the heavy stigma society puts on the word “disability?” Honestly, I think all of these things have played a role.

The ADA defines disability in this way: “ a person who has a physical or mental impairment that substantially limits one or more major life activity.”

My son Jack takes over 50 pills and 14 different medications per day. His respiratory therapy takes 2 or more hours every day. He spends a large portion of his life in the hospital. He’s not in school this week because he is not absorbing food, isn’t breathing as well as usual, and we have to implement new therapy techniques and train his school nurse to perform them.

Cystic Fibrosis (CF) is invisible, progressive, and deadly. Until his lung function drops below 80%, I consider him healthy in comparison to other people with CF. However I know full well that every single day, every organ in his body sustains more damage. His medications help slow the disease but cannot stop it. A simple cold could end his life.

Clearly Jack has a physical impairment that substantially limits one or more major life activities. My son is disabled. It is the first time in his nearly 8 years of life that I have said those words, accepted them, and fully understood what they mean. My son is disabled. Tears are dropping on my keyboard as I type this, tears from shame – not for my son, but for myself. For the first time I realize that I am an advocate for the medically complex and disabled community who could not see her own ableism.

Fortunately, Jack did not inherit my ableism. I suspect he self-identifies as a disabled person without realizing it. He is drawn to other children with disabilities and befriends them immediately. He says “mamma that kid is like me, we are gonna be best friends!”

My job now is to be like Jack and embrace this part of him. I need to acknowledge my shame, and work to change the stigma against disability that was so deeply ingrained in me that I could identify my son as medically complex but feel offended by the word “disabled.” It is up to me to shed the ableism society has instilled in me from youth. Doing so will make me a better person, parent, and advocate.

Being a member of Little Lobbyists has opened me to a world beyond Cystic Fibrosis. It has helped me focus on all forms of medical complexity and disability. Our advocacy isn’t about a specific disease, syndrome, or disability, because we really are stronger together. It’s about raising ALL of us up to create a voice loud enough to get Congress to pay attention to our children with complex medical needs and disabilities and consider them every single time they write a new policy or review a proposed law that impacts them.

Thank God for my friends in Little Lobbyists who did not judge me as I walked this path of discovery, but gently educated me while embracing me and encouraging my advocacy. I have a feeling I’m not alone, and am writing this in part as an invitation to other parents who may, like me, be in denial about their child’s disability. It’s time to take a good look at why we fear this word. Ending society’s stigma against our children with disabilities must start in our own hearts.

Little Lobbyist Jack in front of the U.S. Capitol.

Little Lobbyist Jack in front of the U.S. Capitol.



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.


LL_KidSpeakers_062618%2B%25281%2Bof%2B38%2529.jpg
A Vote for Readler is a Vote Against People with Pre-Existing Conditions (by Maya Brown-Zimmerman)

I’ve been involved in healthcare advocacy work since I was 14 years old, eventually pursuing a Masters in Public Health. Most of my spare time is spent working with patients and families with chronic illness, but you can also find me binging home design and cooking shows on Netflix, and enjoying Brazilian food.

I was born with a rare genetic disorder called Marfan syndrome. I spent most of my first two years in the hospital having surgeries, but it would be several years later before my parents learned what the cause of my difficulties was. I have a list of specialists and medications. Without health insurance I could not afford the tests and pharmaceuticals needed to keep my heart as healthy as possible, let alone the periodic necessary surgeries (10, to date) and hospitalizations.

My husband and I are blessed to have 4 children, who are between the ages of 2 and 10. Between all the kids we’re involved in musical theater, cub scouts, and playing dress up. One of our children is autistic. One inherited my genetic disorder. One has a brain injury from in utero. I can’t work because of the time I spend in therapists’ and doctors’ offices with my children. Since the start of this year alone one of my children has had 2 ER visits and a multi-day hospitalization.

In 2013 my mother was about to start a new job when she started having dizziness. Less than week a later we learned she had stage 4 cancer as she was whisked to emergency brain surgery. I was with her when she woke up and the first thing she did was ask for a social worker to come and tell her whether she had healthcare coverage.

I don’t want to live in a country where someone’s first thought upon waking up from surgery is whether they’re going to go bankrupt from their care. I cried the day the ACA was passed because it meant a safety net for my family: no lifetime caps on medical coverage, and the guarantee of being able to get health insurance even if something were to happen to my husband’s job.

Unfortunately, not all members of Congress agree with me. Right now, I’m worried about the nomination of Chad Readler to the Sixth Circuit Court of Appeals. As a Justice Department official, Readler led the anti-ACA effort on behalf of the administration, and filed a legal brief arguing that the Affordable Care Act’s protections for people with preexisting conditions were unconstitutional. He wants to dismantle the ACA and a vote to confirm him is a vote against my family and millions of families like mine. I can’t let this happen. That is why I participated in a press call with Senator Brown yesterday and shared my story.

Right now, there are 11 million Ohioans. 4.8 million of us live with pre-existing conditions that range from diabetes and asthma to genetic disorders and cancer. Without the ACA, that’s 4.8 million of us here alone that may have to decide between going bankrupt from care, and going without care. If we reinstate the lifetime cap, what happens to people like my son and I, with complex medical conditions? I have friends whose children would have hit that cap by their first birthdays. What happens to the young adults trying to go to college or start a career that lose their health coverage under their parents?

If we lose these protections, people will die. It is as simple and horrific as that.

Whether or not my family loses these protections literally keeps me awake at night. I want our elected officials to remember that we cannot predict when we will need to access the healthcare system and so access to healthcare is an issue that is going to affect us all.  Congress needs to stop these attacks on people with pre-existing conditions and guarantee essential health benefits, lower the cost of care and prescription drugs, and strengthen Medicare and Medicaid.

Please join me in opposing Readler’s nomination by contacting your members of Congress and requesting them to do the same. Thank you.

The author, Maya, and her daughter.

The author, Maya, and her daughter.



Keep Health Care in Mind When You Vote (by Jodi Aleshire)

It's the eleven year anniversary of my diabetes diagnosis and the government still wants me dead!

My brand of insulin costs $340 if I were to be uninsured. That's $0.34 a unit. A unit is ONE HUNDREDTH of a mL. If something seems wrong about that to you, that's because it is. (1)

Technological advances has increased to the point where human and analog insulin can be produced for under SEVEN DOLLARS a vial. For anyone following along at home, that's a nearly 5,000% increase in cost. (2)

It's estimated by the World Health Organization that the average diabetic will use 40 units of insulin a day. At the current price point, without decent health insurance, living a single day costs about $14. A week $95. A month $432. A year comes in at just under $5,000. (1)

There are no "generic" insulin brands on the market, no older options like "pork" or "beef," so to say, animal-based insulins, available in the United States any longer. This is due to "evergreening," a technique used by the big three insulin producers (Sanofi, Eli Lilly and Novo Nordisk) slightly tweaking the formulas for their insulin before their patents can expire, thus extending the patent. (3, 4)

That's why a drug that has been around since the 1920s is still so expensive. While, yes, progress has obviously been made, the Big 3 have slowed the process of change, with Sanofi filing a lawsuit against two producers, Merck and Mylan, from introducing a generic form of Sanofi's primary insulin. (4)

Now, you may be saying "if it costs so much, just suck it up and get health insurance. It's not the government's fault that you don't -" yeah, I’m gonna need you to stop. Because this is where the issue of Big Pharma and the American government's lax health care collide.

This past year, TWENTY STATES filed a lawsuit against the Affordable Care Act (which in March of 2010 made it so that insurance companies couldn't penalize those of us with preexisting conditions by refusing us health care) that moved to revoke the protections in place for us. Texas vs Azar went so far as to say that the protection placed on pre-existing conditions was "unconstitutional." I guess they missed the "life" part of that whole "life, liberty, and the pursuit of happiness" bit. (5)

Not only have legislators tried to take away something that keeps people with pre-existing conditions from, often, a painful, PREVENTABLE death, we've had to watch them mock us in the media. Mo Brooks (R-AL) decided that we simply weren't "living the right way." Or Mick Mulvaney (Officer of Budget and Management for the Trump Administration) declaring "that doesn’t mean that we want to take care of the person, or should be required to take care of the person, who sits home, drinks Coca-Cola, no offense, drinks sugary drinks, and doesn’t exercise, and eats poorly and gets diabetes." Which not only shows a fundamental lack of knowledge on diabetes, but a lack of empathy as well. (6, 7)

While the ACA has yet to be repealed, the window to apply for insurance through the ACA has been shortened from 90 days to 45 days and the awareness budget has been slashed by 90%. Now, there's also the option for Medicaid, which at base-country wide level, will offer coverage if you're under the 138% poverty mark- with individual states having the option to expand coverage to under that point.

I make under $9,000 a year and I only fall at the 73% poverty point, to help put things into perspective. And a basic plan at that rate, without Medicaid, runs on the national average (for me, a single household 21 year old nonsmoker) between $230 and $370 dollars. That's more than my rent if you were curious. (8)

All this to say, health insurance, even with aid, still isn't cheap. And when the cost of insulin is so high, there are still out of pocket charges you have to pay monthly. I know diabetics who have gone without insulin because they just can't afford it; they can't afford insulin; they're trying to save their parents' money. (9)

Diabetes affects over 30 million Americans, with 1.2 million having Type 1 specifically. There are, on average, 1.5 million new cases diagnosed each year. In 2017, the nationwide total cost of diagnosed diabetes came in at 327 BILLION dollars. It comes as no surprise that diabetes is the 7th leading cause of death in America. (10)

I'm 21 years old, and today, I've been diabetic for eleven years. The average life expectancy for a Type 1 diabetic is 15 years shorter than that of the average person. For a woman in the United States, the average is 81. (11)

That means for me, that average is 66. According to statistics, I've got 45 years left. And I'll be damned if the government takes a single year of it.

So do me a favor for my anniversary, keep health care in mind when you vote.

The author of this post, Jodi Aleshire

The author of this post, Jodi Aleshire


January (by Tasha Nelson)

Medical parents will know exactly where I’m going the second I say the following, “January is coming.” January is easily the hardest month for any medically complex family. In this month it does not matter if we have employer sponsored insurance, private insurance, Medicare or Medicaid—we all are all rendered equal in our work-load.

Why is January so hard for us? There is an annual avalanche of work created for us and our medical providers office by our insurers.

In my family of five there are two of us that are medically complex. I have a rare auto-immune disease called Behcet's as well as a rare blood clotting disorder. My 7-year-old son Jack has Cystic Fibrosis; a progressive and fatal disease that affects most of his major organs. To meet us, you would never know we fight illness. We both look and seem healthy.  By contrast, when you see our medical claims, you would think we were on death's door.

Every January I spend between ten and eighteen hours making calls to insurance companies, providers, pharmacies, and facilities. This work happens whether we have an insurance change or not. Where do we start? We first check our plan benefits and formulary (list of covered medications) to see if there have been any changes.  If our plan has changed pharmacy contracts, we must call and set ourselves up with our new local, mail order, and specialty pharmacy, then if there are formulary changes and insurance is dictating an alternate similar medication, I call the doctor's office to request a new prescription as well as all the other prescriptions be sent to the new pharmacies. While we are on the phone for that we are requesting new prior authorizations for all our expensive medications.

TashaandJack.jpg

Most of our medications require a prior authorization so that insurance will cover them. Prior authorizations can take anywhere from 24 hours to ten days to complete depending on whether appeals are needed or not. If appeals are needed, then my work increases and I spend hours proving that my child’s medications are medically necessary. The irony of that is the person making the determination is rarely clinically licensed.

Next, we move to calling each of our medical  provider’s offices. Between my son and I, that is 11 different facilities I contact. Many families with medical complexities rely on grants and co-pay assistance programs which must be re-applied for annually and often provide new identifiers and cards. As soon as we are approved for those items, we make all the calls again.

Many of us incur a little extra work if we elected different insurance during Annual Enrollment, as I did this year. I filled our medications on 12/28/18 with my previous insurance and will fill them again with the new insurance on the first day it is effective 1/7/19. This is because we always need to have a 60-day supply on-hand in the event that we go through a lengthy appeals process, there is a natural disaster, or shipping is impacted. At all times, I must think ahead with every decision we make because without his medication, my son will die. I cannot hope to have enough.  It must be here, ready and on-hand.

This year my family’s insurance has changed, which means I’ll spend closer to 18 hours getting everything updated, ordered, approved, and shipped. The other thing I must be weary of is the dreaded gap. My old plan ends on 12/31/18, the new one begins 1/6/19. This creates a five-day gap where if a claim is submitted for medical care or medications I pay toward my deductible and out-of-pocket on the old plan which will not be attributed to the new plan. If we need medical care in those five days, we are increasing our annual out of pocket over the maximum.

January is full of research, phone calls, planning and care coordination. It is a complex mosaic that sets us up for relative success for the remainder of the plan year. On the other side, our medical providers are working just as hard to update our information and provide the items we need. If you happen to be a person that does not have the same January stress as the medically complex you may instead be a person that notices your doctor’s office running a little differently. The phone queue may be longer, you may have a longer wait for your appointment or a return call. Every piece of work we, as patients, are met with, the doctor's office meets in-kind.


My Son is in Hospice and his Healthcare Matters (by Tonya Prifogle)

My 7-year-old son Colton is in hospice.

Our entire family has been gathered around his bedside for weeks. His health, which had been slowly declining for over a year, rapidly deteriorated the day after Christmas. I’m grateful that he made it to Christmas, my smiling boy’s favorite time of year, to give us the gift of one last holiday together as a family.

The time will soon come when his broken body will be at rest, and my constant fight to ensure his access to health care will become a distant memory.

But not yet. Even in these final moments, when I should be able to focus the whole of my broken heart on saying goodbye, our fight is not over. Once again, our health care system has failed us. Once again, I am consumed by the fire of outrage at the suffering our children are needlessly forced to endure.

Obtaining hospice care for a medically complex child like my son is no easy task. The flat rate allocated for home hospice by Medicaid is not enough for a child like Colton; who needs a trach, feeding tube, supplemental oxygen, ventilator, medical supplies, medications, and more (we don’t call him our “million dollar kid” for nothing). Negotiating difficult contracts with agencies to set up care was complicated and stressful, to say the least.

As Colton became more ill, he needed more pain medication to remain comfortable. The prescription was written, but when we tried to fill it the medication was denied. Over the next few days, the script was denied four times. No matter what our physicians and pharmacists tried, it would not go through. As we ran out of medication, my greatest fear as a mother was coming true - my child would die a painful death and there was nothing I could do to help him. The health care system in our country is so broken that it prevented my child from accessing the medicine he needed to ease his suffering in his final moments.

I refused to accept this. I turned to the Little Lobbyists community I have been advocating alongside and my fellow mommas went into action. Through Twitter and Facebook, we shared Colton’s story. Generous friends and strangers donated funds and clicks alike. We cried out to the world for help and our voices were amplified by collective compassion and matching outrage. No family should have to endure this. Not here, not now, not ever

Fortunately we were heard by the people who needed to hear us. We finally got the attention of the pharmacy responsible. They explained they had made a mistake due to confusion over a new law in our state and were correcting the situation. After more than a week of worry, pain, and distraction, Colton finally got the medication he needed.

I’m filled with relief and gratitude that my beautiful little boy will not have to endure unnecessary suffering at the end of his life. But I cannot stop thinking about all the other mothers who are facing the death of their child. We should not have to fear the loss of health care coverage while we are trying to say goodbye. This is excruciating enough -- without fighting for hospice, without needing a “GoFundMe,” without exposing ourselves in our most vulnerable moment to the public scrutiny of social media in the hope that sharing our story will facilitate access to desperately needed care. This is wrong.

In his all-too-brief 7 years, Colton has taught me so many things about strength, and love, and the gift of life. To all who hear his story, I pray you learn just one thing from him – that the right to health care extends throughout a person’s life. My child deserves to live with dignity and as free from suffering as possible from the time he was a newborn in the NICU all the way to this moment in hospice, as he lies beside me struggling to hang on for just one more day.

Image description: Tonya (the author) and her son Colton embracing nose to nose.

Image description: Tonya (the author) and her son Colton embracing nose to nose.



The Disability Integration Act

Little Lobbyists know our children with complex medical needs and disabilities will grow up to be adults with complex medical needs and disabilities. This is why legislation like the Disability Integration Act, which seeks to end institutional bias and secure everyone’s right to choose to live in their communities instead of an institution - regardless of level of need - is so critical to protecting the civil rights our children deserve.

This year, on Martin Luther King Jr.s birthday, the Little Lobbyists were invited to speak at the re-introduction of the Disability Integration Act with members of ADAPT, NCIL, other disability rights advocates, and members of Congress. The following text is from Erin Gabriel’s speech, mom of Little Lobbyists Abby, Bridget, and Collin. Erin, who lives in Pennsylvania, was also asked to introduce Senator Bob Casey (PA) by the Senator himself before he gave his remarks in support of this bill, which he called and important piece of civil rights legislation befitting the legacy of Martin Luther King Jr..


Image Description: Elena Hung, Erin Gabriel, and Little Lobbyists Xiomara and Abby at the podium during the DIA day reintroduction program. They are accompanied by an ASL interpreter.

Image Description: Elena Hung, Erin Gabriel, and Little Lobbyists Xiomara and Abby at the podium during the DIA day reintroduction program. They are accompanied by an ASL interpreter.

I am the lucky mother of three beautifully autistic children, Collin, Bridget and Abby. Abby is my youngest. She is 9 years old.

In addition to being autistic, Abby is also Deaf-blind, nonverbal, uses a wheelchair and has a long list of medical symptoms that go along with her genetic diagnosis. She has a rare, progressive and degenerative syndrome that we are still trying to learn more about. Medically, Abby has had to go through a lot.

That said, she, in so many ways, is a story of everything that can go right with the system. Because of where we live in Pennsylvania, her hearing loss was found at birth and she immediately qualified for Early Intervention services as well as a home and community based Medicaid waiver for children with disabilities-Pennsylvania’s version of the Katie Beckett Waiver. We have been able to find therapies and treatments that have helped her – all while living at home with her family.

Abby’s syndrome is progressive. She will eventually lose much of what she has gained. Her seizures will return and intensify.  And as her disease progresses, we know she will need nursing care at home to help with her daily needs. With the waiver, we know that when the time comes, she will be able to access the care she needs until she turns 21.  

But our waiver is not available to every child like Abby. It varies significantly state by state. And without that waiver, insurance companies use an institutional bias and won’t provide the home care so many of our children need. That means they will pay for care in a nursing home, but not in your own home. It’s part of why we live 600 miles away from our family- because Abby’s access to care literally depends on her zip code.

And when she reaches adulthood, that waiver will go away. Her services will stop, including any therapy and nursing care she has. She will be put on a wait list that extends for years. Her health will continue to decline during that time, while she waits.

Right now, Abby is growing up in her community, with her family and friends. She goes everywhere with us. She enjoys shopping, going to movies, even going to some political events here and there. She travels. She goes swimming at our local lake. She snuggles with her dog at home. She rides all the rides at Idlewild (our local amusement park). She smiles and laughs and brightens the day of so many people around her. She LIVES her life with more spark than most people I know. She deserves to have that freedom to keep living in her community. To get a job if she can. To keep going out with her friends and to travel if she wants to.  

She deserves to have that choice and not be relegated to a nursing home at age 22 because of the services she will require. She deserves to actually live and not just exist. Abby and people like her deserve the right to that choice regardless of which state they happen to live in. This is why the Disability Integration Act is so important for our family, for Abby and for people like her.

The National Centers for Independent Living (NCIL) held an art contest last summer. My daughter, Bridget, entered. The contest was “What the DIA Means to Me.” After talking about it for a few minutes, Bridget knew exactly what it would mean to her. She drew a picture of herself and her little sister in a wheelchair with a nurse being shown to their table at a restaurant. Because, as she explained to me, “The DIA would mean I could visit Abby at her house and we could go to a restaurant or anywhere we want instead of being stuck in a boring nursing home.”  

The DIA means families can stay together and people with disabilities can participate in their communities and LIVE their lives. Just like every other American. — Erin Gabriel

Image Description: Abby’s sister Bridget with her award from NCIL and her award-winning artwork about “What the DIA Means to Me.”

Image Description: Abby’s sister Bridget with her award from NCIL and her award-winning artwork about “What the DIA Means to Me.”



Speaker of the House (by Stacy Staggs)

On January 3, 2019, the 116th Congress was sworn in, with Democratic party leadership.  At 4am I had yet to close my eyes, even though I had a full day ahead of me. I couldn’t sleep because January 3rd was the day we had worked for two years to reach.  The day the Nancy Pelosi regained reclaimed the gave and became Speaker of the House. This was the day that ended the Republican majority in all three branches of Federal Government.  We made it. Checks and balances have been brought back to the US Government.

Americans with pre-existing conditions, families with medically complex children and adults, people who are chronically ill and in need of sufficient healthcare, all relaxed just a bit, knowing that the Affordable Care Act (ACA) will not be repealed by legislation for now.  I was one of them. My daughter Emma, a former 28 week micro-preemie twin along with her sister Sara, relies on the protections against pre-existing condition exclusions and the lifetime coverage limits the ACA put a stop to…

When Speaker Pelosi reclaimed her gavel I breathed a little easier knowing that the Republican party agenda to repeal the ACA  without a replacement cannot pass while the Democratic party leads one of the chambers of Congress. We saw that the GOP could not repeal the ACA even  when Republicans held the majority in both chambers, but the devastating threat constantly loomed. With Democrats in the majority of the House, the threat has been somewhat neutralized for now.  Instead of being on the defensive, we can resume and expand our plans to improve the framework and execution of the ACA instead of fighting off its demise.

I have never, in my 40+ years of life, followed politics so closely as I have over the past two years.  I have never been so personally impacted or attacked by members of my own government and my fellow citizens who support an agenda that includes removing healthcare and Medicaid supports for millions of families, including my own.  That is why I joined forces with the Little Lobbyists. I could not sit and remain silent as Emma’s right to access healthcare was attacked, belittled and dismissed as unimportant. My daughter is not expendable. None of our children should be thought of as a budget line item.

I was astounded when Speaker Pelosi shared credit for the Democrat’s victory with our Little Lobbyists,” in her first speech as Speaker to House Members and the American public. When she credited part of the progress we have made during these scary and tumultuous times to the Little Lobbyists it hit a lot of us like a lightning bolt!  It served as validation that the innumerable hours, late nights at our kitchen tables, butterflies as we approach the microphone to speak, or write to share stories about our families have, in fact, made a difference. In those early morning hours, between enteral tube feeds, checking ventilator settings, covering for another missed nursing shift, emergency room visits and lengthy inpatient stays, we realized that the time we have given in service of the Little Lobbyists goals have been an important part of the fight to stem the erosion of healthcare in our country.

We now have allies leading the US House of Representatives, and no greater champion than Speaker Pelosi. January 3rd was the day the landscape has changed. It was the day we have had circled on our calendars since before the midterm elections.  The day everything changed.

Stacy’s daughter Emma is the reason she cannot sit and stay silent.

Stacy’s daughter Emma is the reason she cannot sit and stay silent.

Of Mickey Mouse and Congressmen (by Sandra Joy Stein)
IMG-3220.PNG

“Hello, my name is Sandra,” I recorded onto the senator’s voicemail as my own voice cracked. “I am calling you from my son’s Make-a-Wish trip at Disney World.” The tears started down my face. “I beg you to not repeal the Affordable Care Act.”

This was January 2017, just a week week before the inauguration of the 45th President of the United States. The timing felt ominous. We had watched the 2012 election returns from our son’s hospital bed, back when his tracheostomy tube had just been removed and a pacemaker was still protecting his heart. We knew that if our son were fortunate enough to leave the hospital alive, the outcome of the election would determine the fate of his potential for health insurance with a pre-existing condition and without lifetime limits.

Our son’s disease—a horrific and unpredictable autoimmune encephalitis that, like many other diseases, can strike anyone at any age and at any time—came on fast and furious. He went from perfectly healthy to critically ill within a week’s time. His first hospitalization was fifteen months long. The disease caused multiple acquired disabilities, the need for near round-the-clock nursing care, several medications, a wheelchair and other durable medical equipment. While his prognosis was uncertain, his spirit and grit were strong. The mere fact of our trip to Disney World felt like a miracle.

Make-a-Wish was incredibly responsive to his unique needs. Just weeks before our trip, my son stunned us when he regained his ability to walk with a gait trainer. I mentioned this exciting new development to the Make-a Wish staff member who coordinated our trip and she quickly rented a gait trainer for him to use at Disney. When she informed me that “It will be in your villa when you arrive,” I nearly dropped the phone. My son, the bulk of whose childhood has been spent in hospitals and at medical appointments, would be walking around the Magic Kingdom and, just like magic, the durable medical equipment needed to make that possible would appear!

It’s usually much harder. Even with relatively decent insurance, tenacious parents, and extraordinary medical providers, getting my son what he needs is a constant battle and soon after that Disney trip, the administration’s repeated attempts to repeal the Affordable Care Act and severely cut Medicaid made me fear for my son’s life. Should he need to change insurance for any of the predictable reasons, the likelihood that his coverage could be legally denied or prohibitively expensive has increased with each profit-motivated tactic to derail his protection. Given the necessity for mandatory enrollment of healthy folk to compensate for the coverage of folk like my son, coupled with the role of a robust Medicaid program to cover what private insurance does not for people with disabilities, the Republicans have been intent on discontinuing his current level of coverage and care. My son's ability to live at home, frankly to live at all, depends on the social contract between all of us.

Now the 2018 midterms are upon us and I fear for what lies ahead in health policies if the senators and congresspeople who voted against protecting my son’s healthcare remain in office. Already the administration has shortened the ACA enrollment period, allowed junk insurance policies to compete with more robust coverage, allowed non-protection of pre-existing conditions, launched a lawsuit to further undermine healthcare protections, failed to enforce current policies on which people with complex illness and disabilities rely, and misrepresented their healthcare policies and platforms while campaigning. Parents of children with medicalized lives know how to read the fine print of such policies and we know what puts our children’s lives at risk.

My mind returns to that moment at Disney, when I was taking time from my son’s Make-a-Wish trip to call the elected officials I had hoped would break with their party and protect my son. Now it is time to vote them out.


Today’s election matters for family caregivers of children with medical complexity in unprecedented ways. At Little Lobbyists we have leveraged our collective power to protect our children in both our political processes as we also perform their day-to-day care. As November is National Family Caregiver Month, Little Lobbyists is partnering with the Who Lives Like This podcast to feature caregivers, just as we have featured our beautiful children over the past 100 days.

To kickoff off National Family Caregiver Month, Who Lives Like This features writer and caregiving comedienne Sandra Joy Stein. You can hear her episode on Who Lives Like This at http://bit.ly/NaFaCaMoPodcast.



Raising Our Voices Together to Make a Difference (by Aiden Abbott, age 13)
Aiden with his Dad and Brother visiting the Capitol.

Aiden with his Dad and Brother visiting the Capitol.

My name is Aidan Abbott, I’m 13 years old, live in Slinger, WI, love to play basketball and my favorite team is the Milwaukee Bucks. I also have a rare disease called Ectodermal Dysplasias.

People born with Ectodermal Dysplasias have severe oral and dental issues due to missing teeth. They also have sensitive skin, don’t sweat, and other health issues. I was blessed to be born with some of my teeth; however, others who have Ectodermal Dysplasias are born with only two teeth and some are born with no teeth.

Most families, like mine, have to fight for insurance coverage to cover our complex dental issues and insurance will constantly deny treatments. I think this is wrong. Kids need teeth to speak, eat, and chew, and it helps to have teeth so kids don't bully you.

Over the past few years, I have been going to Capitol Hill to advocate for medical insurance coverage for the repair of congenital anomalies, including dental treatments that are medically necessary. Each time I travel to Washington, D.C., I visit all of my legislators, and share my story. During one of my first visits to Capitol Hill, Senator Tammy Baldwin from Wisconsin not only listened to my story, she took action and worked on the Ensuring Lasting Smiles Act (ELSA). This legislation will ensure that medical insurance cover repairs and treatments of congenital anomalies for kids and adults like me. I even had the privilege of naming the Bill the Ensuring Lasting Smiles Act (ELSA).

Aiden and his family and Allison and her family with Senator Tammy Baldwin.

Aiden and his family and Allison and her family with Senator Tammy Baldwin.

My friend Allison, who also has Ectodermal Dysplasias went to Capitol Hill with me and shared her story with her legislators. Ally was able to garner support from Iowa Senator Joni Ernst, who agreed to co-sponsor ELSA, when it was introduced by Wisconsin Senator Tammy Baldwin. The Ensuring Lasting Smiles Act was introduced in August 2018 and has bipartisan support in The House and The Senate.

It is important for kids and youth to share their stories and advocate on Capitol Hill. Legislators need to hear our stories and understand the struggles we go through and the insurance coverage issues our families face. If our legislators don't know about our insurance issues, they will not be able to help us.

I have made it my mission to work with Senator Baldwin's office and my other legislators to make sure that everyone born with congenital anomalies get the coverage and treatments they need. My family, along with the other National Foundation for Ectodermal Dysplasias families continue to contact their legislators and ask them to support our cause.

If we all raise our voices together, we can help bring change to kids and families who desperately need medically necessary care and treatments. If you’re over 18, make sure you vote for candidates who will protect our care in the upcoming midterm elections. And, no matter what age you are, you can start talking to your legislators at home and in D.C. about the issues your family faces.

I look forward to seeing you all on Capitol Hill in the future!



Laura Hatcher
“If there is anything you need, please let us know” (by Kate Green)

People have been asking us this since 2014 when our second daughter, Lorelei, was born with Down syndrome. Immediately after she was delivered, she was whisked away to our Children’s Hospital for surgery to repair a blocked intestine and she spent her first weeks of life in the NICU. In her first two years, Lorelei had more scary medical diagnoses, needed additional surgeries, hospital stays, and therapies. Though the bills were high ($120,000 for one stay!), we had good insurance and were covered. We were okay, so while I appreciated the many kind offers, I didn’t reach out for help.

025.JPG



In the spring of 2016 things were going pretty well for us, until I started to lose weight without trying and had several bouts of gastroenteritis. My doctor ordered an ultrasound, and in June of 2016 I was diagnosed with renal cancer.

My left kidney was removed, and though the recovery was rough, I was lucky that no chemo or radiation were necessary. Once again, kind offers of help poured in.

“If there is anything you need, please let us know.”

We had out of pocket expenses, but didn’t have to risk losing our home to pay for the surgery. I worried about leaving my children without a mother, but I got the life-saving medical care I needed. When I didn’t feel well, I could see the doctor and take necessary medication without worrying about the cost. We had good insurance and I could take care of myself; so while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2017 we discovered that Lorelei had life-threatening third degree heart block and needed a pacemaker. As Lorelei faced heart surgery and our family again faced a “new normal,” more kind offers of help poured in.  

“If there is anything you need, please let us know.”

But Lorelei survived, and thanks to our insurance we didn’t worry about the cost of heart surgery or the hospital stay, we focused on her. She was going to be okay. So while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2018, Lorelei developed a cough that would not subside. Her doctor sent us to the ER and she was admitted to the hospital and diagnosed with RSV. We celebrated her 4th birthday with nurses and doctors at her bedside. Fortunately, Lorelei recovered pretty quickly and we were able to go home in a few days. Until, two weeks later, she was back in the hospital with pneumonia. Again, our friends and family stood by us.

“If there is anything you need, please let us know.”

I no longer sleep well during cold and flu season (which in Ohio lasts from September to May), and this year I was diagnosed with a rare and incurable neurological disorder called Cervical Dystonia, which causes excruciating neck pain (and is exacerbated by stress). But, when Lorelei has a cough for more than a few days, she can go to the doctor. She can also see the other specialists, and get the therapy, hearing aids, and additional surgeries she needs. I can also get treatment for my pain and monitor my cancer, so I’m able to continue caring for my family and working full-time.

Woven in between all the frightening diagnoses and unexpected hospitalizations are moments of joy, fun, and laughter. We are blessed with an abundance of love and fortune. Lorelei and I have both been saved by medical science, wonderful doctors, and access to affordable and necessary health care coverage. We have bills, but for now, we can afford to pay them. We have been able to focus on our family and haven’t needed to ask for help.

Until now. The Affordable Care Act, which protects people with pre-existing conditions – like myself and Lorelei – from being denied or charged more for coverage, or even completely cut from care by a lifetime max, is under threat by the party in power. Programs like Medicaid and Medicare are targeted for drastic cuts. If we don’t do something, in the very near future, I could lose the ability to care for myself and my family.

I am letting you know I need your help.

I need you to vote for lawmakers who will ensure ALL people have affordable and appropriate health care coverage. Our story is not an exception; we’re all one accident or illness away from needing health care. While illness may not affect you today, it surely affects someone you love. It affects people I love.

I need you to vote because our lives depend on it.

OH_LorelieGreen2_crop.jpg




Every Child Deserves a Chance (by Amy & Erik Boyle)

Like most couples, when we dreamed of having a child we dreamed about our child laughing, playing, growing up strong and smart, going off to college, having tons of friends, being part of a community, falling in love, and one day maybe starting her/his own family.  When we decided to have our first child, we were young, healthy, working parents who assumed we’d find great childcare and be able to continue our lives (although maybe a bit more tired than before) as we always have.

Our first child, Ryler, was born in June 2011.  He was full-term, but to our surprise, only about 4lbs and had a significant cleft lip and palate which prevented him from sucking. We spent several weeks in the hospital with him undergoing numerous tests from specialists to determine what other medical challenges he had, and learning how to feed him. We eventually discovered he has a genetic disorder none of the doctors had heard of, swallowing issues which required a feeding tube for a couple years, has a few heart defects, a bleeding disorder that required transfusions and causes excessive bruising and bleeding, is immune deficient, hearing impaired, has microcephaly (small head with abnormal brain development), seizures, significant intellectual disabilities, and he would require extensive early intervention and continuous therapies to learn what most of us take for granted – how to eat, walk, talk, hold things with his hands, etc. Today, he is followed by almost 15 medical specialists to manage his care.

After learning all this about our son, the dreams we had for him before he was born didn’t dissipate, but our focus shifted to understanding his medical issues and how to navigate our new world together. Our dreams may have changed a bit, but during those early days, and still today, the most important thing we want for our son is that he be given a CHANCE. We believe that everyone deserves one. We want Ryler to have a chance to develop to his fullest, to love and care for others and be loved and cared for by many, to go to school and learn, to have friends, play and laugh, and just be a kid.     

ryler2.jpg

We were fortunate Ryler was born 15 months after the ACA (Affordable Care Act a.k.a “Obamacare”) became law.  Because of the ACA, we don’t have to worry about lifetime maximums within our private insurance or pre-existing condition insurance discrimination, so Ryler can have access to the many wonderful specialists who work with and believe in him. Thanks to our Medicaid waiver which helps our family cover things, like therapy, that private insurance doesn’t, Ryler has been given the chance AT LIFE we dreamed of.  

It is frustrating to us that many don’t realize how crucial affordable, quality medical insurance and programs like Medicaid are. Many people don’t appear to understand what they cover, how they protect the most vulnerable Americans, how close they themselves may be to needing ACA protections one day (if they don’t already), or how devastating it can be to go without.  Raising a medically complex child can be financially devastating, no matter your income level. Many families like ours need one parent to work in the home to care for their sick child (Ryler’s amazing Daddy in our case) and are down to one income; making health care costs even more of a challenge. Our private insurance and Medicaid pay for extremely expensive antibodies that protect Ryler from illness, his seizure medications, home nursing, and therapies. Medicaid even gives children like Ryler the ability to go to school with medical care in place, rather than being forced to teach him at home where he’d have little social interaction.

Today, Ryler is an extremely happy, strong, playful, spunky, loving seven-year-old.  He adores his family including his little brother, Reece and medical alert dog, Oaty.  He loves going to school and gives the best kisses. Ryler has proven many doctors wrong over the years and we’ve learned so much from him, simply because he was given the chance to be a little boy – to learn in an environment appropriate for him, and to receive crucial, life-saving medical care. As a family, we’ve been with him during countless medical procedures, surgeries, hospital stays, ICU visits, ambulance rides. We have even seen him near death after complications from procedures.  But one thing that has saved our sanity and allowed us to focus on caring for our sweet little boy is knowing he will always have the health care coverage he needs. If we don’t vote to protect our care in November, GOP leadership has said they will once again try to strip families like mine of that lifeline. Please be a health care voter and help kids like Ryler have the chance they deserve.

Ryler_1.jpg




Don't Crowd-Fund Health Care; Vote For It (by Tasha Nelson)
TashaandJack.jpg

I’m conservative on some things and less on others. A true swing voter, a moderate. A Republican was as likely to get my vote as a Democrat —dependent on their voting history on issues important to me. Historically, I leaned more Republican than Democrat until last year, when the Affordable Care Act (ACA) came under fire and I became terrified that my son might lose the health care vital to his survival.

My son Jack is 7 and has a fatal genetic disease called Cystic Fibrosis. This disease is scary, profoundly expensive (just one of the 14 medications he needs to survive is $1,200 per month), excluded from life insurance policies, and fatal.

When Jack was born the full protection for pre-existing conditions provided by the ACA wasn’t yet in place. When he contracted MRSA (a very scary infection), I used up all my vacation time and FMLA to care for him and faced losing a job I’d held for 10 years, knowing my son’s disease made him largely uninsurable. I was terrified that if I lost my job, I’d also lose my son.

Fortunately, I was lucky. The CEO of the huge company I worked for had a heart. He learned of my dilemma and allowed me to work from home. What a relief that was! For 3 months I worked from home, feeling more secure, but still terrified. I’d experienced exactly how quickly my son could go from having all he needs – to having nothing at all. It wasn’t until the full protection of the ACA took effect in January of 2014 that I felt safe. For the first time since Jack was born insurance companies couldn’t discriminate against him by withholding coverage.

Others weren’t as lucky as I was. Their CEO didn’t save their job, their child was born, and died, before the ACA. In the history of health insurance in this country those of us with pre-existing conditions have only experienced 4 years of guaranteed coverage, and we’re already standing on the edge of losing it.

I am a mom fighting for her son’s right to live his healthiest life.

I speak from experience. I’m not a person raging from behind the safety of a keyboard, I’m not a person whose feelings are hurt easily, and I don’t make assumptions. I do speak in person with my politicians at every opportunity, and I actively seek those opportunities out. I educate myself before making any political decision (or post).

No candidate who voted yes on the Tax Bill that weakened that ACA or in favor of short-term “junk” insurance will get my vote. I am a #HealthCareVoter, my son Jack is a #LittleLobbyists, and Jennifer Wexton will get my vote over Representative Barbara Comstock, because Comstock has proven to me that she won’t protect us and she failed my son with her votes.

Many Republicans I’ve spoken with have argued that the Tillis Bill is the GOP’s answer to protecting pre-existing conditions. This is a half truth, at best. While the bill does prevent insurance companies from excluding people with pre-existing conditions all together, it does NOT require insurers to provide coverage for their pre-existing condition – or prevent their premiums from being far more expensive.

I used to be a swing voter that leaned Republican. But, now that the Republican Party has reduced rare disease tax credits, is not protecting people with pre-existing conditions, and moved (in my opinion) far too quickly on a decision about a lifetime Supreme Court Justice who could determine the future of health care in this country... the GOP has single handedly forced me to move steadily and solidly to the left.

My family is a working, lower middle-class family, with a Federal health insurance plan. Between now and December we will work hard to pay all of our 2018 medical costs, because typically by February 1, 2019 we will owe $9,000 again.

We participate in grants and medication coupons to help us, but because of the new accumulators payors introduced this year (our insurance is one of them) which don’t count coupons and grants towards our deductible or out of pocket max, we’re likely going to owe even more next year. Meanwhile the insurance company will receive our deductible twice – once from our coupons and grants, then again from us directly.

This week I started selling our things on Facebook to help cover our medical bills, which is normal for many families dealing with expensive illnesses, but was somewhat shocking to many of my friends who reached out with offers of help and crowd-funding.

While the offers were sweet, we respectfully declined. Crowd-funding Jack’s medical needs is not sustainable. Unless health care in our country changes, these expenses will continue to build for the duration of Jack’s life. The single biggest thing you can do to truly help families like mine, is VOTE for candidates who will protect access to affordable health care for everyone who needs it.


Why I’m Speaking Up (by Stacy Staggs)
Stacy.jpg

I wish y’all could have seen my face when I was handed a megaphone, of all things. Actually, it may be better my reaction was mainly internal, because I can tell you I did not feel nearly as confident as my picture portrays.

After more than a year of calling and emailing both of my US Senators, with hardly any response, I felt pretty ineffective. I was sure people would want to know the human cost of their proposed Healthcare changes. It had to be a mistake that both Senators had repeatedly voted to repeal the Affordable Care Act. They must not know what it means for my girls, and millions of children like them, who would be in mortal danger from such an unstudied and hasty change. To be fair, I had never approached them with a constituent issue in the past. Honestly, I didn’t even know their names until early 2017. Still, I had no way to anticipate the apathy I was greeted with by Senators Burr and Tillis.

I felt bold when I accepted the request from Little Lobbyists co-founder Elena Hung to speak (gasp!) in front of people (gasp!) at a political rally (gasp!), but in the days leading up to the #StopKavanaugh rally in Atlanta, my courage evaporated. I was left with the feeling that we all experience when asked to speak in public – all kinds of scary scenarios ran in a loop in my head. What if I fall over? Has anyone ever barfed at one of these things? Fainting seemed like a real possibility.

In the car, I poured over my carefully written remarks and practiced the purposefully placed pauses to my family, who listened in hopeful support. Together, we navigated through downtown Atlanta in our matching Little Lobbyists t-shirts and marched to the rally site. As I watched the three speakers ahead of me, I already felt the support of the crowd. This was a safe space filled with like-minded, active citizens who were angry about what we’re seeing come from our legislators. The unrest was pointed away from me, aiming straight for Washington DC.

Megaphone aside, when I spoke my first words, “My name is Stacy. I also answer to ‘Mom’, ‘Mommy’ and <ASL sign for ‘Mom’>…” I knew the crowd was already on my side and full of encouragement. I continued to tell the story of my beautiful twin toddlers, former micro-preemies who have fought every minute of their five years on this earth to stay with us. My voice broke as I shared snip-its from the early days in the NICU, when my willpower and determined stare were not enough to bring up oxygen saturation. The helpless feeling we have when the monitors are blaring and nurses move swiftly to intervene. I did my best to convey the impossible fragility of a 2lb newborn that has more wires than skin. When I waivered, I felt hands on my shoulder. I heard calls of encouragement from the crowd. I looked into the sea of faces and I saw genuine concern. Not just for our plight, but for the ongoing threat to their lives from a political party bent on undoing the accomplishments of the prior administration.  

I ended my speech by asking for help. Beyond outrage, we need action. We need concerted efforts and relentless outreach to our legislators.  Every day and twice on Sunday, we need calls, office visits, tweets and signs of protest to keep these critical issues top-of-mind. In April, I promised myself I would do at least one thing each day toward the goals of voter registration and story sharing. I see my daughters faces’ in the daily pictures of “100 Little Lobbyists Who Need You to Be a Health Care Voter” series we are sharing on social media.  

I am a newly minted parent activist and I know there are more of us out there. I know you’re angry and worried about what’s happening. You want to get involved, but you’re constantly exhausted and a little unsure about how to take the next step. Recent weeks have been especially difficult for us. We have witnessed conduct that would have been unthinkable until it all unfolded on our televisions. It would make perfect sense to recoil in despair.  

But consider this: What if we continue to speak up? What if our actions become stronger than our fears? What can we accomplish if we keep going? Just like we have done with our children and their medical teams, we can continue to advocate for them to reach their highest potential. I can help you. You can help me. We can do this together! Who’s with me?


Protect Children with Complex Medical Needs and Disabilities: Little Lobbyists Oppose Appointing Judge Kavanaugh to the Supreme Court (STATEMENT)
scotus.jpg

In recent days there have been many troubling allegations regarding Judge Kavanaugh’s past. However, even before these allegations came to light, there were known facts about the Judge’s past rulings and legal opinions that make him a threat to children with disabilities and complex medical needs’ future health care, education, and civil rights.

Once appointed, the next Supreme Court Justices’ rulings will have a long and lasting impact on our children’s future, and no amount of calls to our legislators will influence his decisions. As advocates and as parents it is critical we take a stand now and tell the Senate not to appoint a judge to the highest court in our country who is a threat to our children’s future. Our children deserve a Justice who will defend them (almost) as well as we do. That Justice is not Judge Kavanaugh.

Here are three reasons Little Lobbyists opposes the appointment of Judge Kavanaugh to the United States Supreme Court. We ask you to read and share with your fellow special needs parents, your friends, family, and most importantly with your Senators.

1. Kavanaugh is a threat to our children’s health care.

Judge Kavanaugh has said he thinks the supreme court should not have upheld the Affordable Care Act, which protects people with pre-existing conditions against being denied health care, being charged more for health care, or for anyone having a cap on their lifetime coverage for health care.

Judge Kavanaugh has stated that he feels it is okay for the President not to uphold or defend a law he disagrees with, like the Affordable Care Act.

There are already cases challenging the Affordable Care Act making their way to the supreme court. If appointed, Judge Kavanaugh would likely have a deciding vote in taking away the vital protections our children’s ability to access health insurance relies on.

2. Kavanaugh is a threat to our children’s education.

Judge Kavanaugh supports school voucher programs which routinely force students with disabilities to waive their rights under the Individuals with Disabilities Education Act (IDEA) to a free and appropriate education. Voucher programs divert funds away from already underfunded public schools which are required to recognize the rights of children with disabilities and complex medical needs.

3. Kavanaugh is a threat to our children’s civil rights.

Judge Kavanaugh ruled that people with intellectual disabilities do not need to be consulted, or have their wishes considered, before elective surgeries are performed on them (including abortions). In employment discrimination cases, he has consistently ignored/discounted the evidence provided by people with disabilities in favor of explanations provided by the employers. His overall interpretation of antidiscrimination laws, including the Americans with Disabilities Act (ADA), and the role of administrative agencies in charge of enforcing those laws limits their ability to protect people against discrimination.  

To contact your Senators we recommend you call the Senate switchboard directly: 202-224-3121. You can also use this email tool from our friends at The Arc USA.


For additional resources to further explain Little Lobbyists position, please see these related articles:

On Health Care:

The fate of the ACA could turn on Judge Kavanaugh’s appointment, VOX

Supreme Court nominee Brett Kavanaugh could deal death blow to Obamacare, USA Today

What’s at Stake with the Supreme Court Vacancy, Protect Our Care

On Education:

Kavanaugh Could Unleash School Voucher Programs Throughout the Nation, National Education Association (NEA)

A dig through Kavanaugh’s record on education finds plenty of material, POLITICO

School Voucher Programs Should Be Clear About Disability Rights, Report Says, NPR


On Civil Rights for people with Disabilities:

Employment Discrimination: Review of Disability Related Cases Involving Judge Brett Kavanaugh, Bazelon Center for Mental Health Law

Review of Disability-Related Cases Involving Judge Brett Kavanaugh, Consortium for Citizens with Disabilities (CCD)

Kavanaugh Thinks It’s Okay to Perform Elective Surgery on People Without Their Consent, Talk Poverty

Disability Activist Elizabeth Weintraub testifies about the danger that Brett Kavanaugh poses to the disability community, C-SPAN (video)

AUCD Opposes the Nomination of Judge Brett Kavanaugh to the Supreme Court of the United States, Association of University Centers on Disabilities (AUCD)

Response to Snopes Piece Regarding Brett Kavanaugh and Disability, Association of University Centers on Disabilities (AUCD)

Disability Groups Line Up Against Trump Supreme Court Pick, Disability Scoop

WHAT THE NOMINATION OF JUDGE KAVANAUGH TO THE SUPREME COURT MEANS FOR PEOPLE WITH DISABILITIES, Center for Public Representation

Stop Brett Kavanaugh Fact Sheet: Disability Justice, People for the American Way

The American Association of People with Disabilities Opposes the Nomination of Judge Brett Kavanaugh to the US Supreme Court, AAPD

ASAN Opposes Supreme Court Nominee Brett Kavanaugh, Autistic Self Advocacy Network



Laura Hatcher