Families of children and youth with special health care needs and disabilities are the engine that drives home- and community-based services for their children. They are not passive observers in the pediatric health care system; they become specialists in medical care, advocacy, and public health, uniquely qualified through their lived experience of providing care across multiple systems to their child—a “certification” only they can hold.
I know because I was the mom, primary caregiver, chief communicator, and care coordinator for one of my daughters, Justice Hope, before she died at the age of 11. Justice was born with congenital anomalies that did not tie up neatly into one overarching diagnosis but that led to multiple disabilities and many complex medical needs requiring technology, home health, and numerous interventions throughout her life.
Nearly 40 years ago, the Beckett family of Iowa worked to bring their daughter with multiple health care and technology needs home from the hospital to continue her care, leading to a fundamental and radical shift in Medicaid policies to favor home care as the norm for children and youth with special health care needs. This shift also gave rise to family-centered care and family-professional partnerships across health, educational, and other systems of care that further changed the landscape of how and where care is provided.
However, decades later, families still report feeling invisible: relied upon to provide care but largely ignored as equal partners and a vital part of the labor force. The home health care picture for children and youth with special health care needs is different by state, but the challenges that families identify are universal: a lack of home care and respite providers, lack of care coordination, non-existent communication between home health and other providers, unreliable providers, lack of privacy, long waits for durable medical equipment, poor quality of home care supplies, and problems with transitions, all of which impact a child’s quality of life and family well-being.
As the pediatric home care system continues to grow, so do the challenges. Efforts to remedy problems often leave out the priorities, contributions, and meaningful involvement of families who are the only constant for linking multiple systems and teams for their child. Families must be supported in ways meaningful to them; they must be respected and valued as equals because the pediatric home care system cannot exist without them.
Feeling Invisible
In 1999, Carol Levine recounted the following in the New England Journal of Medicine about her experiences providing care to her husband after a tragic automobile accident:
“During my nine-year odyssey, I stopped being a wife and became a family caregiver. In the anxious weeks when my husband was in the intensive care unit, I was still a wife. … At some point, however, when he was no longer in immediate danger of dying, and as the specialists and superspecialists drifted out of the picture, I became invisible. Then, when the devastating and permanent extent of his disabilities became clear to clinicians, I became visible again. At that point, I was important only as the manager, and it was expected, the hands-on provider of my husband’s care. … I feel abandoned by a health care system that commits resources and rewards to rescuing the insured and ill but then consigns such patients and their families to the black hole of chronic ‘custodial care.’ ”
Although providing care to a spouse is different than providing care for a child with congenital health care needs, it is uncanny how the stories, policy issues, and challenges overlap.
I often felt invisible in my daughter’s care, despite filling a critical workforce gap to make sure she got the care she needed. My efforts felt akin to those of the little Dutch boy in the old story who saves his country by putting his finger in a leaking dike (in my case, Justice’s health and quality of life, and our family’s well-being) to keep it intact.
Filling Workforce Gaps
The first time my daughter came home from the hospital with nursing care, not only was it nearly impossible to fill the shifts for the care she needed, but the quality of care was horrific. Justice had a feeding tube, an ileostomy, a central line, and a catheter, and required assistance with all activities of daily living (ADLs), including bathing, dressing, toileting, and grooming. She was receiving 22 hours of total parenteral nutrition (TPN), fluids, and lipids through her central line (an intravenous line that requires highly skilled care) daily, but the nurses provided by the home health agency were not licensed to provide central line care or TPN services. In fact, they were not able to do much more than assist with ADLs. Despite having paid nurses on shift for Justice, I had to prepare and hook up her TPN and care for her central line.
Data indicate that 5.6 million US children with special health care needs receive a total of 1.5 billion hours of family-provided home health care annually. The value of this care is estimated to be between $17.6 billion and $35.7 billion dollars a year. However, these numbers are not truly representative. For example, they focus on the provision of skilled health care tasks alone, instead of including assistance with ADLs. This mischaracterizes pediatric home care (the amount, type, extent, and complexity of ADLs for children and youth with special health care needs is vast and directly connected to health) and woefully underrepresents the amount and value of family-provided care. The unpaid efforts of families result in significant cost savings for the health care system, but excluding ADLs from estimates of these costs renders families’ efforts invisible. In addition, some estimation methods (such as the replacement cost method) value family-provided care as equivalent to that of a home health aide’s minimum wage and do not recognize that most families provide care at a skill level beyond that of home health aides. Providers, researchers, policymakers, and payers must partner with families to capture a representative picture of family-provided care; value and support family caregivers; and partner in the co-design of a pediatric home care system that is truly family-centered.
Navigating Insurance
A few months before my daughter passed away, our new primary insurance denied her enteral formula as “not medically
necessary.” Ironically, however, they approved the rental of the pump that delivered enteral formula to her gastrostomy-jejunostomy tube. Justice had not eaten by mouth during her entire 11 years of life, so I suspected that there was a problem with the paperwork and started tracking it down. The two supply companies, two insurance policies, and the gastroenterologist’s office all told me “they didn’t know why or how to help.” I investigated more, discovered that the problem was incorrect clinical and visit notes and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) codes, and “suggested” an appropriate remedy so that Justice could eat and our family would not have to pay $750 per month out of pocket for formula.
Being able to discern that the insurance denial was a result of wrong ICD-10 codes took years of experience navigating my daughter’s benefits. Many times families cannot get to the bottom of denial or, when they do, learn that their coverage is simply inadequate for the unique needs of their child. Nearly one-third of children with special health care needs do not have adequate insurance coverage. More than 20 percent of families of children with special health care needs pay more than $1,000 per year in out-of-pocket health care expenses. Families need adequate insurance that meets the unique needs of children and youth with special health care needs and of pediatric home care. For instance, pediatric home care should be recognized as an essential health benefit. In addition, federal and state policymakers, agencies, and providers need to engage the expertise and lived experience of families (regarding the need for and impact of home care, for instance) in the development of policies, programs, and resource requirements.
Coordinating Care And Communication
Justice had at least 15 physicians but no shared plan of care, and it was my job to keep every member of the vast care team informed. Justice’s providers relied on me to “give report,” but I was then expected, by some, to await instructions instead of participating in shared decision making and planning for the care of my daughter that I would ultimately manage and provide.
Fragmentation and lack of care coordination plagued Justice’s care and the care of most children and youth with special health care needs. Only about 20 percent of families of children with special health care needs “usually” receive the help they need with care coordination. Nearly 40 percent of families report that their child does not receive needed care coordination, and more than one-third are often or sometimes frustrated in efforts to get services for their child. Many define care coordination as a job in a health care office or setting, but it is truly as dynamic as the needs of children and youth
with special health care needs—unique for each child and requiring flexibility, nuanced insights of lived experience, and tenacity to achieve. Time and again, this role falls to families.
Families also play the role of communicator-in-chief. In a pediatric health care system mired in fragmentation, this role is most critical and most challenging. Being the communicator-in-chief requires that families speak up for the needs of their children to ensure care safety and quality. For example, I required nurses to demonstrate skills before they performed them on Justice. Sadly, earlier on in our home care journey, I trusted people too much, and Justice was the one to suffer: in one instance, a broken leg by a nurse who refused instructions of how to stretch and put on a leg brace and in another, a catheterization resulting in scars. But when families do speak up, we are often labeled as “difficult parents,” “micromanagers,” or “in need of psychiatric help or something else to do.” (The latter is an actual quote that was said to me in the last few months of Justice’s life; sadly, many parents are told similar things.) Families need to be equal partners or teammates in their child’s care; a true team is one in which each member is valued equally for their contribution regardless of knowledge, skill level, or a specific role.
Marginalized No More
The challenge of caring for children and youth with special health care needs is often described as the family or caregiver “burden.” I experienced these challenges, and often with significant stress, but I never thought of them as a burden. Many families find this term to be offensive, not constructive and laced with judgment. Quite possibly the most burdensome part of this care is that the work we do as skilled providers and advocates, while essential to achieving good patient outcomes, is ignored and not valued as equal to the work of others on our children’s health care teams.
Efforts to measure and support caregiver “burden” focus on challenges and negatives; I would rather focus on resilience—how families function when faced with challenges, adversity, and trauma. Studiesshow that how parents respond to stressors is more important to outcomes than the stressors themselves. Notably, more than 80 percent of families of children and youth with special health care needs know they have strengths to rely upon during tough times.
Many families find the peer support they receive from other families with similar experiences to be the most valuable in building resilience. The national network of Family-to-Family Health Information Centers (F2Fs) provide such support. These statewide, family-led organizations help families navigate systems of care, payers, and learn about resources. F2Fs also organize families to collectively drive change on the local, state, and federal levels.
Family caregivers are public health workers. Yet, families and family-led organizations struggle to be recognized as part of
care teams and to be authentically regarded as equal colleagues. While increasingly invited to provide input, families remain tokenized and invisible. They are asked to “share stories,” provide parent-to-parent mentoring, and provide direct care to their children with special health care needs but are not viewed as “professional enough” to warrant an equal role in designing and implementing programs and policy. Recently, an executive director of a family-led F2F shared that the care coordinators of their state medical home project so regularly send families to the F2F for the actual coordination of care that the F2F has begun to advocate for recognition of and payment for their work. Thus far, their efforts have been met with the response that they lack the proper clinical degrees to be recognized and paid as care coordinators.
How have families, for nearly four decades, cared for their children and youth with special health care needs at home and advocated for change on behalf of all such children? The reality is that they have done it so well that the power and skill of family-provided care and leadership have become simultaneously marginalized and exploited as a hidden source of labor. Providers, pediatric home care, payers, and policymakers must authentically and meaningfully partner with families in the
co-design of family-centered care, policies, and programs. Families must be supported, valued, and respected as equal partners in care—because the pediatric home care system cannot exist without them.
