Child Life Specialists

• Child life is a great resource to aid in patient and family care and understanding. The service is at no charge to patients and families and available at most hospitals with a pediatric unit.
• To use child life services, speak with staff at your medical facility to be connected. This request may be completed the day of or before arrival.
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Child Life may not be available at all facilities or units in a hospital or other medical facility. The organization, Child Life On Call, can provide many resources when child life may not be available.

Click HERE to learn more

Social Workers

• Social workers work with children with medical complexity and their families to help overcome challenges and advocate and access medical care, shelter, sanitation, and education.
• Social workers are available in most medical facilities by request. Speak with the care team who will have the information about their organization’s social work team or have references to outside social workers who can provide assistance.

Insurance - Care Coordinators

• Medical insurance care coordinators work with families to set appointments, help them fill out and understand complicated medical paperwork, coordinate with insurance providers to determine payment options, facilitate the execution of treatment plans created by doctors and nurses, coordinate efforts between doctors when there are needs for multiple avenues of care, and assure families that they have an advocate to help them navigate their medical journey.

Chaplains and Spiritual Advisors

• Chaplains work with families to help foster comfort, hope and peace while they offer suggestions about how spirituality and faith can be a source of strength.
• Families do not have to have a recognized faith practice in their lives to work with and benefit from the services of chaplains and spiritual advisors. These professionals can provide a variety of interventions, both religious and secular, to meet the needs of patients and families.
• Chaplains can consider the cultural beliefs of families when discussing sensitive topics.

Bereavement Professionals

• Bereavement professionals provide support as end of life approaches, and they  can help with planning and decision making.
• Memory making and legacy building are often extremely important to children and families and bring a great source of comfort before a child reaches end of life and after a child has died.
• Many institutions use bereavement professionals to support siblings, often staying in contact with families for a significant period of time following the death of a child.

Support Groups

There are perceived benefits from peer support programs. These programs offer unique support through advice from people with similar experiences.

• Since support groups are often topic-specific, locating a group may require research. Many doctor’s offices have references to some support groups specific to diagnoses which is a great place to start the search.
• Many institutions use bereavement professionals to support siblings, often staying in contact with families for a significant period of time following the death of a child.

Social Support

• Put together a list of family and friends who can help with tasks, meals and other daily or weekly needs. Set up a  text thread, email chain or online group to reach out to those folks.
• Create a list of ways people can help when they offer, because being asked "How can I help?" can be overwhelming.
• Do not be hesitant or afraid to ask for assistance. People are often eager to help you meet a specific need.

Lawmakers and Legislators

• Get to know your local lawmakers and legislators - constituent advocacy is a powerful tool to effect change in policy, especially at the state level.
• Grassroots advocacy for children’s health issues is often parent/caregiver-based activism. And it works.