There is a myth in the United States that if you work hard and get a job that provides good health insurance, you and your family members will never need to worry about accessing the medical care you need to stay healthy.
For many, this myth holds true. Most professional jobs provide employees and their families with sufficient insurance to cover their basic medical needs. Preventative care, including annual physicals, are usually covered with a modest co-pay. Trips to the emergency room may cost a little more, but out-of-pocket costs are typically no more than $150.00. Specialist appointments are typically covered without the additional burden of referrals and obtaining pre-approval for a visit.
Yet, for those who experience a significant illness or disability, even the excellent insurance regularly available to professionals is not enough. As many other middle-class families have found, the country's system is ill-equipped to deal with the brunt of higher medical costs, especially those in families with disabilities and complex medical needs. My husband and I, both attorneys, learned this lesson starkly when our daughter Claire was born with complex medical needs, multiple disabilities and significant intellectual disabilities. She has epilepsy, chronic lung disease and autism. Her brain, heart, ears and kidneys did not form in the typical way. She cannot speak and uses a wheelchair. She needs to be watched closely and cared for twenty-four hours a day to ensure she remains safe and healthy. Any one of these conditions would be expensive to treat but combined, the cost is astronomical.
My family is not alone in having both inadequate health insurance and insufficient income to pay for the high costs of medical care. In 2020, before the pandemic, 43% of working-age adults lacked adequate health insurance resulting in out-of-pocket costs for medical care equaling or exceeding 10% of household income. For families like mine, expenses not covered by private insurance far exceed this amount. This means that millions of Americans, including many insured, fail to seek medical care when sick, do not get tests recommended by their doctors and skip follow-up visits, appointments with specialists and treatments. Moreover, one in four Americans reported not taking prescription medications or cutting doses in half because of the cost. Many of them had ongoing health issues.
More Stories of Power and Health Connect in Unexpected Ways
A Single Story out of Millions
When Claire was born fourteen years ago, she was a gorgeous baby with big blue eyes, chunky cheeks and curly blond hair. After weeks in the Neonatal Intensive Care Unit, she came home with monitors, oxygen and a full schedule that sometimes included three appointments a day to various therapists and specialists. She did not develop according to typical expectations, but she made progress at her own pace. As a toddler, she learned how to blow kisses, which became her signature move for years. She learned how to walk when she was seven. Through the years, she has pieced together a communication system involving modified sign language, gestures and a communication device with pictures to make herself understood.
However, as Claire grew, so did her needs. Even with Claire’s “Cadillac” health insurance plan, the costs of her care were crushing. Small co-pays added up quickly with Claire’s multiple appointments a week. There were also co-pays for her medications and frequent E.R. visits. It was not unusual for our out-of-pocket costs to top $1,000 per month, on top of the $1,000 premium we were already paying for coverage. Some equipment Claire needed, including a hearing aid and wheelchair, were not covered by private insurance. We constantly fought with her insurance company who insisted that Claire was not covered for “habilitative services” such as physical therapy to help her learn how to walk, but that physical therapy services would be covered for “rehabilitative services” if she had been able to walk then lost that ability in an accident.
Complicating Claire’s access to care was the reality that I had to quit my job because no adequate childcare or home care was available for children like Claire, a problem common in families with a disabled child. They did not have enough staff to care for a child who needed to be fed, who would be unable to walk and who lacked to capacity to understand basic directions or even respond to her name. We tried to find a nanny who might be willing to care for Claire, but everyone we interviewed declined, uncertain that they could handle her many medical needs and preferring instead to care for typically developing children who would be able to engage in storytimes and the library and play independently at the playground.
Even if I had been able to find childcare for Claire, it would have been nearly impossible to work and take Claire to the numerous medical appointments she had each week. As a baby and young child, Claire had at least four appointments a week, although it was common for her to see seven or more doctors and therapists in a given week, all of which were during working hours. Together Claire and I developed a routine at the hospitals where she received most of her care. I had a favorite chair in the hospital lobby and got to know the owner of the hospital's coffee stand by name. He asked about Claire, and I asked about his family.
My husband and I covered Claire’s care in part by neglecting our own medical needs and by keeping our lifestyle very modest, especially compared to most other attorneys. We lived in a small apartment, went without a car and did not go on any vacations for many years.
Eventually, as Claire's needs grew and with the addition of more children to our family, I could no longer care for Claire on my own. Out of desperation, we applied for Medicaid for Claire. She was initially denied coverage because her father earned too much, although it was not nearly enough to cover the cost of Claire’s care. We looked into moving to Minnesota to be closer to my husband’s family and have a stronger support network, but job prospects there were not great, and health insurance and special education options were abysmal.
Impossible Choices Parents of Disabled Children Make
Out of desperation, I went to Capitol Hill with Claire during a lobby day for healthcare organized by Easter Seals, a nonprofit health care organization that provides services to children and adults with disabilities and their families. A staffer for Republican Congressman Roscoe Bartlett told me that the Congressman hoped that doctors would volunteer their services to treat children like Claire, even for care as critical as cardiac surgery. The staffer expressed that she hoped we could find a donated wheelchair once Claire outgrew her stroller.
What I took away from this conversation was that if nothing changed, my daughter would not be able to live a life of dignity. Neither she nor I had any power, but those that did made the literal recommendation that instead of changing the system to provide security and access to healthcare that we should take Claire from door to door quite literally begging for care, and that if we could not find a doctor to treat her imperfect heart or help control her epilepsy out of the goodness of their hearts, we would have to sit by and watch Claire die. If we could not find a wheelchair in Claire's very small size that someone was willing to gift her, then we would have to keep her at home, isolated, until we found someone more generous.
After several years, we eventually discovered that Claire was eligible for a Katie Beckett Medicaid Waiver where we lived in the District of Columbia. This program waives parental income requirements for Medicaid eligibility. Instead, Claire qualified based on the level of her disability, and it became a lifeline for our family, providing home care that allowed Claire to remain in her home and grow up with her three younger siblings while covering significant other medical expenses.
To qualify, D.C. makes a determination every year that the level of Claire’s disability is significant enough that she cannot live safely in her home without Medicaid and that without the support Medicaid provides, she would be forced into an institution for care. D.C. also makes the determination every year that the cost of keeping Claire at home with long term services and support is less than the cost of keeping her in an institution. With Medicaid, Claire was able to get a $30,000 medical-grade bed that allows her to sleep at home safely, a hearing aid to allow her to participate meaningfully in school and a wheelchair that allows her to be a part of her community. The Katie Beckett waiver fills the gaps left by even excellent private insurance plans like Claire’s.
We thought that our worries were over, but it is only a reprieve. As Claire’s needs change, as our other children’s needs and our family situations also change, we — like many other families in the country — need flexibility from the system, which currently does not exist.
Not every state has Katie Beckett waivers. Not every state provides long term support and services for children to remain in their homes with their families. My family needs to move closer to my husband's job, closer to family, and access better schools for our other children, and we would like to move to Maryland. Maryland also provides better services and support for disabled adults than D.C., and we want to ensure a stable adult life for Claire who, at 14, is at the age when planning for a transition to adult services typically begins because waitlists for adult services are very long as well.
However, moving would mean giving up Claire’s access to Medicaid since Maryland does not have a Katie Beckett waiver. While they have a program to provide services for children with rare and expensive diseases like Claire, the waitlist is more than six years long. This is not just problematic but devastating. The cost of Claire’s care, excluding what is covered by her private insurance, easily exceeds the income my family brings home in a year. Without Medicaid, we might be able to cover Claire’s care for a few months or even up to a year by using retirement savings, but that would still leave a gaping chasm in care that would span years.
Discussion after discussion with parents, advocates and administrators in Maryland revealed the same unpleasant answer. There is no program for middle-class families who earn too much to qualify for Medicaid through the traditional route but who do not earn enough to fully cover the cost of their child’s care that does not have a years-long waitlist.
The only available solutions are horrifying. Claire can be placed into foster care, at which point she would qualify for Medicaid for as long as she remains in someone else’s home. Claire could live in an institution or hospital away from her family. My husband and I could get divorced, and I could take sole custody of Claire, enabling us both to qualify for Medicaid as long as I earned no more than slightly above poverty-level wages. Or, my husband could quit his job, driving our entire family into poverty with no health insurance, at which point our family of six would all need and qualify for Medicaid.
All of these options are far more expensive to the government than providing Claire with access to Medicaid. All have worse outcomes. Yet, because of our lack of power, these are the options presented to us.
If my family does not move, we face staying in a school system that is failing our children and the long-term consequences of poor education. We will not be able to move closer to work and family, which would improve our lives in many other ways. Claire will also be in a worse position to receive adequate services once she becomes an adult. Not moving only delays the problems we need to solve but does not avoid them.
Claire’s lack of power means that she has no real choice in where she lives. Disability advocates for years have been advocating for a Money Follows the Person approach to funding. It makes little sense that governments are willing to provide care at a higher cost, but only if the disabled person does not live in their home. It makes little sense that funding is available to provide care only if families are fractured, and disabled people are removed from their family, friends and community. This money is available. Disabled people should be able to use it to live in whichever state, in whatever setting they believe is best.
We are not alone. Medical planning sites advise disabled people like Claire who require long-term services and supports to avoid institutionalization to “proceed with caution” because even if “there is a comparative waiver, there may be a very long waitlist for benefits…[and]one may have to apply for state Medicaid benefits and reside in a nursing home facility until waiver services become available.”
There are over 2.8 million disabled children in the United States. Millions of parents, like my husband and me, went to college, followed the “rules” of creating a stable, middle-class life in America and came up against the reality that even with a good income and great health insurance, there are gaps that cannot be filled without the safety net that only good government programs can provide.
Parents Discover the Power of Stories to Affect Policy
Again and again, I have been faced with the reality of the powerlessness of disabled people and their families. Accessing health care for my daughter has largely been the focus of my life since I became a mother. Lacking any other means to exert influence or change the systems in place for families like mine, I discovered that the power of families like mine lies in telling our stories.
Over the years, I have returned to Capitol Hill many times. I have joined with grassroots groups like MomsRising and Little Lobbyists and to tell my family’s story to those in power, and in so doing, discovered a kind of power that comes with concerted effort.
Kristin Rowe-Finkbeiner founded MomsRising in 2006 to help families across the country achieve economic security and thrive. One of the issues MomsRising focuses on is health care. Led by Felicia Burnett (formerly Willems), MomsRising’s healthcare program compiles stories of thousands of parents across the country and delivers them to Congressional offices. MomsRising also brings parents and children to the Hill to meet with members of Congress and tell their stories in meetings and press conferences. Burnett is so passionate about her job because after her son Ethan was born in 2006, she learned he needed to start chemotherapy when he was just a few weeks old. Burnett needed to quit her job to care for her very sick baby, and as a result, her entire family lost their health insurance. While Medicaid covered Ethan's care, Burnett was unable to find insurance for herself because she had a pre-existing condition that insurers were not required to cover at the time.
Burnett advocated with MomsRising to help get the Affordable Care Act passed and in 2010. In 2013, she and Ethan were invited to the White House to meet with President and Mrs. Obama to discuss the impact of the ACA on her family’s life and how it allowed both her and Ethan to access the care they need as well as how grateful they were for the Medicaid program that covered the cost of her son’s care when he was sick. Jon Carson, Obama’s Director of Office of Public Engagement, called MomsRising “one of the smartest and most effective advocacy groups that I've seen across a full range of issues.”
Then, there are the parents whose advocacy lies squarely with those living with disabilities. Terrified at the prospect of the Affordable Care Act's possible repeal in June 2017, Elena Hung and Michelle Morrison, both mothers of medically complex children, came upon an idea around the kitchen table —lobby Congress, introduce these lawmakers to the stories of families living with disability and impart how crucial programs like ACA, Medicaid, ADA and IDEA are for families just like theirs. The idea was further bolstered by the fact that the doors to Senate and House offices are not locked, either in Washington D.C. or in their communities. In the three years that followed, Little Lobbyists families returned to the Hill over 100 times to share their stories.
Hung and Morrison used this experience to build Little Lobbyists, a nationwide family-led organization that advocates for children with complex medical needs and disabilities. Over the past three years, Little Lobbyists (including my family) have opened those doors and been able to educate Hill staffers and those Senators and Congresspeople willing to meet with us about the reality of raising a disabled child — the many needs that are not met, the nights staying awake worrying about what happens when a doctor recommends care that is financially out of reach, the impossible choices we are forced to make between keeping our families together or ensuring our children have the care they need. Little Lobbyists has made dozens of visits to the Hill, usually with our children. Its members have visited all 100 Senate offices and met with at least 100 members of Congress. There is more work to do, but progress has been made.
In her January 2019 speech retaking control of the House of Representatives, House Speaker Nancy Pelosi acknowledged the power of ordinary families like mine have in coming forward to share their experiences and their fears. She stated: “Countless families — even sick little children, the Little Lobbyists — bravely came forward to tell their stories. And they made the difference.” Just by showing up, we made the difference. We came with all of our chaos and noise, with our children’s oxygen tanks and feeding tubes. We had to leave meetings with our Senators when our children had a seizure. A couple of times, we came in Halloween costumes. The night Senator John McCain gave his famous thumbs-down vote on the Senate floor to save the Affordable Care Act, we were on Capitol Hill to show Members of Congress who they were protecting, or hurting, with their votes. Right after Senator McCain issued his vote, away from the cameras, he hugged my mother as she held my sleeping toddler.
Speaker Pelosi is not the only one who took our stories to heart. Senators Chuck Schumer, Bob Casey, Patty Murray, Chris Murphy, Debbie Stabenow, Maggie Hassan and Ron Wyden and others shared the story of Little Lobbyists on the Senate Floor and in press conferences. They met with us many times. Senator Jack Reed from Rhode Island made the time to meet with Little Lobbyists many times and thanked us for telling us things he did not know about the challenges families like mine face. Vice-President Elect Senator Kamala Harris highlighted the story of Little Lobbyists Myka Eilers, who during the Senate Confirmation Hearings for Justice Amy Comey Barrett to illustrate what is at stake for health care in this country. Little Lobbyists families have twice been invited to testify before Senate Committees about their medically complex children, Xiomara and Emma.
Progress is slow. The system of power was not created to support children or adults with disabilities. Every step towards keeping people with disabilities in the community has been a struggle, won by those willing to show up and tell their stories, ready to share their struggles and fears in a very public way. It is not easy, but it is where our power lies.