• Article
  • October 23, 2018

How Hospitals Create Partnerships with the Families of Children with Complex Medical Conditions

How children's hospitals are creating deeper, more dynamic partnerships between families and providers to improve care for children with medical complexity and reduce health care spending.

By Darcie Reeson

Families, including the Wests, Jurados, Joneses, and Landua-Figueroas, were integral to the work of the CARE Award.

Caroline West is quick to smile and deliver hugs. But everyday life isn't easy for her or her close-knit family. When she was born in 1997, Caroline was one of only 250 children in the U.S. diagnosed with alternating hemiplegia of childhood, a rare neurological condition. She has seizures, cerebral palsy (CP) and is developmentally delayed and confined to a wheelchair.

Little things easily turn into big things. A cold becomes pneumonia. Wisdom teeth extraction requires hospitalization and ends in a 10-day stay for bacterial pneumonia. Mild scoliosis becomes a total back fusion accompanied by mild pneumonia. When the family brought Caroline home from the hospital, the demands of caring for her daughter quickly overwhelmed Tish West.

In the early days of her life, Caroline was frequently hospitalized to get her seizures under control. "An ambulance ride to the emergency room in the middle of the night became routine," West says. "Balancing the needs of my other three children during these hospitalizations was a challenge. So I quit a lucrative job and gave up my dream of a career to care for her." For 21 years, the West family has experienced the emotional and financial toll of raising a child with medical complexity.

Families like the Wests are not alone. Up to 3 million children in the U.S. have various degrees of complex medical conditions, and the current health care system is not equipped to provide care coordination or support families, the primary caregivers for these children.

According to the 2018 Pediatrics article, "Families of Children with Medical Complexity: A View from the Front Lines," the numbers of children with complex medical conditions have increased. Treatments for life-threatening diseases and congenital abnormalities that once were fatal are contributing to the survival of a new generation of children requiring care coordination and integration that's beyond the capacity of the current medical system.

Factor in that each of these patients is unique. They may share the same diagnostic names, but the similarity ends there. Their variable and highly specialized medical needs make it difficult to find one solution that can be widely replicated to improve care for this small, but very high cost, patient population. In 2015, 10 children's hospitals, along with Children's Hospital Association, began work on the Coordinating All Resources Effectively (CARE) Award to find a common approach for transforming care delivery and payment for children with medical complexity enrolled in Medicaid.


The 8,000 children participating in the CARE Award—the largest sampling of children with medical complexity in one study—represent $380 million in annual health care costs. As the highest utilizers of health care resources, these patients present a significant challenge for children's hospitals, families, physicians and payers.

Funded by the Center for Medicare & Medicaid Innovation (CMMI), the goal of the CARE Award, a national three-year study, was to demonstrate the health system would benefit from an investment in care coordination for this population. Here's a closer look at the issues these families face, and how the CARE Award will help inform best practices to improve care for the up to 6 percent of children with medical complexity enrolled in Medicaid who represent 40 percent of the Medicaid spend for children.

Care coordination is a full-time job

Born in 1991 with spastic quadriplegic cerebral palsy, Tim Jurado spent the first five months of his life connected to machines to keep him alive. For his mother, Teresa, who also had an active toddler son, she never felt like she was in the right place—physically and emotionally. "My husband needed to work two jobs to keep us insured and financially alive, so me and my sons did everything together," Jurado says. "Tim got to experience parks and playgroups, while his brother learned about doctor's appointments and therapy."

Life got more complicated for the Jurados. "Tim had seven specialists in different locations who did not talk to one another," she says. "He was in the back seat of the car screaming while we were driving around to these specialists." The family moved with the hope of finding better services, but that meant Teresa left her support system—her parents and brothers—behind. While she now has a supportive community and Tim is older, he has end-stage renal disease, and life remains unpredictable.

"One blood test can change our lives again," she says. When families like the Jurados enter the world of having a child with complex medical needs, they assume the health care system functions in a coordinated way. Gradually, they learn the system has flaws. Families bear the brunt of trying to coordinate care from numerous providers.

Like the Jurados, Monica Jones coordinated inpatient stays; home nursing and medical equipment; physical, occupational and speech therapies and visits to eight specialists for her twins, Isaiah and Jaydon, 12, and daughter Cailyn, 13. Cailyn and Isaiah have generalized arterial calcifications, a rare disease that has no cure. "I had to manage the visits and communication with the multidisciplinary team," Monica says. "Not only was it a full-time job, it didn't allow me to be full-time mom."

Carl Cooley, M.D., clinical professor of pediatrics at the Audrey and Theodor Geisel School of Medicine at Dartmouth and CARE Award faculty, says proactive care coordination remains one of the biggest challenges in managing these patients' care. "With multiple specialists involved and a sometimes secondary role for primary care physicians, no one assumes clear responsibility for coordinating care," Cooley says. "Families with the means to take on care coordination do it because someone has to, while others struggle to be successful."

Care coordination became the basis for the better care aim in the CARE Award by developing a dynamic care team. Team members represent the child's entire care continuum, and designate care coordinators with the expertise to help families navigate different systems. When the Wests found the Chronic and Complex Clinic at St. Joseph's Children's Hospital of Tampa in Florida, life changed. There, Caroline had access to the right care at the right time. "We found a true medical home," says West. "Prior to this, we were doing poorly on our own. Now, the nurses and doctors know us, and they are experienced in caring for a medically complex child."

The right care at the right time is a key aspect of care coordination. These patients' conditions can change rapidly; families aren't sure how to get care when this happens. They reach an after-hours triage nurse who is unfamiliar with their child's needs. Or, they panic and seek emergency care. If the provider can't access the health record, the child may receive extensive and expensive testing or be admitted.

Because uncertainty can lead to unnecessary utilization, access to care became another focus of the CARE Award. Participating families worked closely with care teams to develop goals for care plans and explicit access plans adjusted for the child's needs. These tools simplified the decision-making process for a family worried about their child's health on a Saturday night.

The financial side of care

A Closer Look: Projects Inform Public Policy

The CARE Award results add to a growing body of CMS Innovation Center-funded projects focused on improving care and reducing spending for children with medical complexity. A number of projects, many involving children’s hospitals, have used these awards to implement projects ranging from building medical homes and neighborhoods for these patients to developing comprehensive patient care plans. These projects aim to demonstrate that care delivery for these children must address their needs in a timely manner, and there are opportunities to reduce spending for this population. The CARE Award adds its insights to this evidence base with the aim of contributing to larger-scale innovations and delivery transformation among providers.

Project results also inform public policy. In September 2018, the CARE Award caught the attention of Rep. Joe Barton, R-Texas, who referenced the findings during an Energy and Commerce hearing conducted on the Advancing Care for Exceptional (ACE) Kids Act. Congress later passed the bill, and President Trump signed it into law in April 2019. The ACE Kids Act of 2019 will improve care for children with the most medically complex conditions who rely on Medicaid. It will also reduce spending by tailoring medical care to these kids’ needs, allowing them to access multiple providers and services when needed.

Learn more about the ACE Kids Act.

For Marion Landua-Figueroa, a focus on helping families navigate care is essential for a family's well-being. She's the mother of nine children; seven have complex medical conditions. Nate, 26, has microcephaly, short bowel syndrome and autism; David Jeremiah, 21, has fetal alcohol syndrome (FAS); Caity, 13, has CP and seizures; Jaycob, 12, has Tetrology of Fallot, CP and requires full-time care; and Caity and Jaycob are wheelchair dependent. Isaiah, 11, has a learning disability and FAS; Jermaine, 3, was diagnosed with a global delay and FAS. Caila, 3, was born with cytomegalovirus infection and as a result is deaf, has CP, failure to thrive and microcephaly.

"As a single, working mom, it has been difficult to find competent and compassionate home health care for my children. Because of the lack of home health care staff, I was in a tough position to place my 12 and 13 year olds into an intermediate care facility last year." The challenges for Landua-Figueroa don't end there. Trying to keep a job has been difficult because of multiple appointments, in addition to trying to get insurance to approve equipment her children need to maintain their quality of life.

Families like the Landua-Figueroas navigate the financial side of their child's care under stressful conditions. Many rely on Medicaid, even if they have private health insurance. Medicaid has important benefits, such as transportation, durable medical equipment and therapy services that private insurance plans don't cover. "Financial challenges will always be a reality," says Carolyn Allshouse, executive director of Family Voices of Minnesota and CARE Award faculty. "Medicaid must be a viable alternative that covers needed services to ensure optimal health outcomes for this population."

The Jurados have private health insurance but rely on Medicaid to supplement a large co-pay or a share of the cost for essential equipment. But navigating Medicaid and private health insurance systems can be tricky. "There are authorizations and denials to track," Jurado says. "There are insurance companies telling you one thing when the law is saying something different. I have been on hold for hours trying to get insurance companies to work together."

Cooley says it's a challenge for families when states contract the management of their Medicaid programs to for-profit Medicaid managed care organizations (MCOs). MCOs tend to control access to care through the creation of narrow networks, prior authorization requirements and restrictive medical necessity processes. "They may also reduce already low Medicaid payment rates to providers, creating shortages in personnel willing to accept low reimbursement rates," Cooley says. "These factors disproportionately affect children with medical complexity."

Lessons learned

The Wests, Jurados, Landua-Figueroas and Jones' represent families from across the U.S. who participated in the CARE Award. Results from the project demonstrate it's possible to transform care and payment for children with complex medical conditions without creating additional stress for families. Here are some of the conclusions from the work of the CARE Award teams:

Engage families at every level. Families know how the systems work, not how they were designed to work. "In quality improvement work, families offer creative solutions to system challenges because they're not constrained by working within the limitations of systems," says Allshouse. "Families must be involved deeply in system design, implementation and evaluation." This changed the perspective for hospitals that thought they were already successfully engaging families.

Partnerships lead to increased family confidence and an ability to manage health care interventions for their child, more effective shared decision-making and care planning, increased satisfaction with the health care experience, and decreased utilization of emergency and in-hospital services.

"It was important to include the family voice in this work," Jones says, who is a family consultant at Children's Hospital of Philadelphia (CHOP) and provides a family voice for the Compass Care Team at CHOP. "This partnership between patients, families and health care providers is how excellent health care is achieved. She says this results of this work helped create balance in her life. "It gave me an opportunity to be mom, wife and to carve out time for self-care."

Care coordinators enable access and reduce stress for families. The CARE Award revealed that providers weren't aware a family like the Jurados had so many people who were critical to the child's care. The focus became taking care coordination off the backs of families and transitioning it to a team-based approach that included enhanced relationships between physicians and services. Families drive the child's care plan, and care coordinators ensure providers are working together.

Dynamic care teams represent the care continuum. Hospitals worked with families to identify a care team of primary care physicians, specialty providers, social workers and care coordinators. As a parent partner for the CARE Award at Wolfson Children's Hospital in Jacksonville, Florida, Landua-Figueroa saw this concept come to life. "It is life changing to have one person in the pediatrician's office who is familiar with my children and can communicate with providers and insurance," she says. "In my role, families shared how important the support is; they appreciate having someone who understands their lives."

Families need a plan. Each family was given an access plan that listed the care team members contact information for routine or urgent issues. But after interviewing more than 500 families after emergency department (ED) visits, teams found families didn't know what to do, who to call, or when to go to the ED. So teams enhanced access plans by adding contingency actions and emergency care plans, which provide guidance when an acute illness or exacerbation occurs.

Once all interventions were implemented and 100 percent of children enrolled, inpatient days and ED visits declined. The decrease in ED visits exceeded the three-year aggregate goal, which correlates with the use of patient centered care plans and access plans.

Viable alternative payment models support resources. Hospitals began to understand care coordination costs and partnered with payers to adopt new payment models that support and sustain the new care delivery model. The development of these models enables providers to understand underlying utilization and spend patterns.

Communications tools are essential. The CARE Award emphasized the importance of the care plan and access plans so when a patient arrives in the ED, information is accessible. Electronic health records serve as a single source of information for any physician or specialist interacting with the child. This ensures consistent care. For example, Caroline's conditions require her to be in the doctor's office frequently for X-rays and blood tests.

During these visits, West, who served as a parent partner for the CARE Award, has seen improvement in the patient portal. "This allowed me to access information on a timely basis and not have to wait to hear results from the doctor. We were able to start treatment for Caroline sooner, which helped her get better faster." 

More change is needed

The CARE Award was a collaborative experience for a diverse group of children's hospitals and partners. The 10 sites varied in size, geography and local demographics, experience with quality improvement and concepts such as medical homes and family centered care, existing systems of care for children with medical complexity and relationships with primary care physicians. They also developed critical relationships with multiple state Medicaid agencies.

It was difficult to achieve change across multiple sites and providers; the CARE Award was the first CMMI project to do this. "Given this diversity and the challenge of improving outcomes these children, I was inspired by the evidence of improved outcomes," says Cooley. "I was impressed by the integration and coordination with primary care teams for children whose care has become siloed and fragmented."

Jurado, as a parent mentor at Lucile Packard Children's Hospital Stanford in Palo Alto, California, is helping other families navigate the system she once struggled with. "I look at the ideas we had, the important CMMI funding we received, and the people working on this project, and I see we're just beginning to assist these children," she says. "The tireless work that went into this project and the outcomes should be an inspiration to keep moving this forward."

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