When a Child Faces a Serious or Life-Limiting Illness: How ECM Can Help

When a child is living with a serious, complex, or life-limiting illness, families may face many challenges at once. Managing multiple doctors, specialists, appointments, treatments, medications, hospital visits, and community resources can feel overwhelming.

Enhanced Care Management (ECM) for children and youth can provide an additional layer of care coordination and support for eligible Medi-Cal members with complex health and social needs. ECM can help families navigate healthcare services, coordinate available resources, and create a care plan centered around the child's individual needs and goals.

ECM does not replace a child's doctors, specialists, or pediatric palliative care team. Instead, it can help families navigate the different parts of their care and connect with appropriate healthcare and community resources.

What Is Enhanced Care Management (ECM) for Children?

Enhanced Care Management (ECM) is a Medi-Cal benefit that provides additional care coordination for eligible members with complex healthcare and social needs.

For children and youth, ECM may help families coordinate different healthcare providers and connect with services that address medical, behavioral health, and social needs.

A dedicated care manager can serve as an important point of contact, helping families understand their care plan, identify barriers, and connect with appropriate resources.

The goal is to help bring the different pieces of a child's care together.

How ECM Supports Children With Complex Health Needs

Children with serious or complex illnesses may need support from several healthcare professionals and community services.

ECM can help families navigate these connections through:

Care Coordination

A child may receive care from a pediatrician, specialists, therapists, behavioral health providers, hospitals, and other healthcare professionals.

An ECM care manager can help coordinate with appropriate members of the care team and help families navigate different services.

Individualized Care Planning

Every child is different. An ECM care plan can consider the child's healthcare needs, goals, family circumstances, and available support. As needs change, the care plan can also be reviewed and adjusted with the appropriate care team.

Connecting to Community Resources

A child's health can be affected by challenges outside of the doctor's office.

Families may need help accessing:

• Transportation

• Food assistance

• Housing resources

• Behavioral health services

• Social services

• Community programs

• Caregiver support

• Other appropriate resources

ECM can help identify these needs and connect eligible members and families with available services.

How Pediatric Palliative Care Supports Children

Pediatric palliative care focuses on improving comfort and quality of life for children living with serious illnesses. Palliative care can address physical symptoms as well as emotional, social, developmental, and spiritual needs. It can also provide support for parents, caregivers, and siblings.

Importantly, pediatric palliative care is not only for the final stage of life. It can be provided alongside treatment for a serious illness.

Depending on the child's needs, palliative care may focus on:

• Pain and symptom management

• Comfort

• Emotional support

• Coping with illness

• Communication

• Quality of life

• Family support

• Helping children participate in meaningful activities

Listening to a Child's Voice

One of the most important parts of pediatric care is recognizing that a child's voice matters. Children understand illness differently depending on their age and developmental stage. Young children may express their feelings through play, behavior, or simple questions. Older children and teenagers may have a greater understanding of their illness and may want to participate more directly in conversations about their care. Whenever appropriate, children can be encouraged to share what matters to them.

Healthcare teams and families may ask:

• What is most important to you?

• What are you worried about?

• What helps you feel comfortable?

• Is there something you want your care team to know?

• Who would you like to have with you?

Including a child in age-appropriate conversations does not mean placing difficult decisions on them. It means recognizing their experiences, feelings, preferences, and concerns.

Supporting the Whole Family

A serious illness affects more than the child. Parents and caregivers may experience stress, exhaustion, uncertainty, and grief while balancing appointments, caregiving responsibilities, work, and family life. Siblings may also experience changes in their routines and emotions.

ECM can help identify social and support needs and connect eligible members and families with appropriate services.

Support may include connections to:

• Behavioral health services

• Community resources

• Transportation assistance

• Food resources

• Housing support

• Caregiver resources

• Other appropriate family services

Supporting the family can be an important part of supporting the child's overall well-being.

ECM Can Help During Healthcare Transitions

Healthcare transitions can be especially difficult for families caring for a child with complex medical needs.

A child may move between:

Hospital → Home → Specialist → Primary Care → Community Services

Each transition can involve new appointments, providers, instructions, equipment, transportation needs, or follow-up care. An ECM care manager can help families navigate these changes and connect with the appropriate healthcare and community resources. ECM does not make medical decisions or replace healthcare providers. Instead, it can provide an additional layer of care coordination and navigation.

Every Child's Care Journey Is Different

There is no single approach that works for every child. Two children with the same diagnosis may have different symptoms, goals, family circumstances, emotional needs, and support systems. That's why care should be individualized and centered around the child and family. As a child's needs change, the care team can reassess what support may be appropriate.

A Simple Example of How ECM Can Help

Imagine a parent saying:

"My child has so many doctors and appointments. I don't know how to keep everything organized."

An ECM care manager can work with the family to understand their concerns, help coordinate available services, and connect them with appropriate healthcare and community resources. The goal isn't to take over the family's decisions.

The goal is to help make a complex healthcare journey easier to navigate.

Making Every Moment Matter

When a child faces a serious or life-limiting illness, families may experience uncertainty, fear, and difficult decisions.

Although healthcare providers cannot always change the course of an illness, compassionate and coordinated care can help support comfort, quality of life, communication, and the needs of the entire family. 

Pediatric palliative care focuses on helping children and families live as fully and comfortably as possible while facing serious illness.

For eligible Medi-Cal members, Enhanced Care Management can provide an additional layer of support by helping coordinate care and connect families with appropriate resources.

You Don't Have to Navigate Complex Care Alone

If your child has complex health or social needs, talk with your healthcare team or Medi-Cal health plan to learn whether Enhanced Care Management (ECM) may be available.

ECM can help connect eligible children, youth, and families with care and support—one step at a time.