Children’s Complex Medical Needs

Today, treating children with complex medical needs is often difficult since many of these children may require intensive services from multiple providers in a range of clinical and non-clinical settings.

A briefing sponsored by Children’s Hospital Association held on Capitol Hill October 5, 2018 opened with comments by Sarah J. Dash, President and CEO, for the Alliance for Health Policy

She emphasized that the volume of care required to support caring for vulnerable children with complex medical issues is not only challenging but a number of other factors can affect providing care to children with complex medical needs. Today, providers are faced with challenges along with payers and caregivers that can impact the quality, affordability, and accessibility to care for this group of children.

Starting the panel conversation, Deidre Gifford, MD, MPH, Deputy Director, Center for Medicaid and CHIP Services at CMS reports “Medicaid covers nearly half of all births in the U.S, resulting in the need to provide care to over one-third of all children in the U.S.

She reports that states can elect the Health Home option under their Medicaid State Plan. Health Home providers coordinate all primary, acute, behavioral health, and home and community based services to treat the “Whole Person”.

Providing Health Homes requires coordination and integration of primary, acute, behavioral health, long term services, person-centered care planning, uses a multi-disciplinary team approach, and is available to children with selected chronic conditions which are determined by the state.

So far, three states (New Jersey. Oklahoma, and Rhode Island) have approved health home programs tailored specifically to meet the needs of children. New Jersey and Oklahoma target children with serious emotional disturbances along with co-occurring developmental disabilities, The State of Rhode Island targets children with severe mental illnesses and also if they have two or more chronic conditions.

Stephen Groff, Director, Division of Medicaid and Medical Assistance, for the state of Delaware Health and Social Services https://dhss.delaware.fov/dhss/dmma developed a Steering Committee in the state.

The Steering Committee includes community partners, managed care organizations, state agencies, parents, and caregivers, plus community advocates working to map the care needed to deal with the needs of children with complex needs.

The Committee started the process to help children in the state receive care if they have one or more chronic health conditions, have functional limitations that impact their ability to perform everyday daily activities, require multiple sub-specialties, therapists, and or surgeries. These children are often continuously dependent on technology to overcome functional limitations.

The goal is to clearly define and identify the population, assess the availability of services, evaluate models of care, and analyze the relationships between insurance payers. One specific goal for the Steering Committee is to do a comprehensive data analysis related to children with medical complexity.

Karen Fratantoni MD, MPH Medical Director, Complex Care Program for Children’s National Health System, discussed how the Center for Medicare and Medicaid Innovation (CMMI) within CMS, developed a national three year project to transform care delivery and payment for children with medical complexities

The program referred to as “CARE” a CMMI funded project, is available through Medicaid at ten hospitals, involves eight Medicaid agencies, deals with 8,000 medically complex children at 42 primary care sites, and funds $380,000,000 to handle total annual care costs. CARE hospitals partner with families and patients, primary care providers, and payers.

She reports that CARE has decreased hospital days by 32 percent, decreased ED discharges by 26 percent and has increased family engagement. Dr Fratantoni also said, “The CARE program should provide telemedicine directly to homes with children with complex needs.

Rylin Rodgers, Director of Public Policy, Association of University Centers on Disabilities, reports that access to coverage for children with disabilities and complex health needs varies from state to state so families can struggle to get coverage for their children.

In addition, Federal policies around disability are not working and care coordination alone can take up a great deal of time depending on how many coordinators are involved.

Both as a parent and professionally, she understands personally the issues involving special education regulations, public and private healthcare financing, along with family professional partnerships and situations. Her two children were born with complex medical issues and she truly understands how these in-depth issues can impact policies and systems and be difficult for the parents and children involved to handle.

To take it a step further, many young adults living with complex medical issues may need to get jobs, live independently, change providers to adult healthcare providers, pursue post-secondary education, plus be determined to successfully navigate the adult service system. The truth is that every transition for these children and their parents can involve losing financial help and/or resources.

Go to for the video.

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