Special Health Needs: Non-Medical Necessities Matter, Too

By: Joan Jeung, MD, MPH, FAAP​

If your child has special healthcare needs, you're probably used to asking doctors questions about medications and treatments to help your child. But did you know that your doctor can help support your entire family's well-being?

This support can include non-medical concerns like meeting basic needs (such as food and housing) and dealing with stress and emotional concerns. Pediatricians know that addressing these issues can make a big difference in your child's health, development, and overall well-being.

Supporting your entire family's well-being

Our living conditions, daily life, relationships, and emotions shape our health as much as medicine and technology do. That's why we call these things "social determinants of health."

More than 1 in 5 children in the United States live in families that struggle to make ends meet. If your family is in a similar situation, you are not alone. More and more, pediatricians are recognizing that we need to partner with families to meet basic needs like nutritious food and safe housing if we want all children to be healthy and thrive.

Medical issues and everyday life

For children and youth with special healthcare needs, medical issues and the stress of daily life can impact each other in unique ways. Taking time off work for a child's medical appointments, or paying for transportation to all those appointments, may become difficult. Sometimes it's too hard for parents to juggle a paid job with the many demands of caring for a child with special needs. And sometimes insurance or financial issues make it hard to afford care.

The time and effort needed to handle a child's medical care may leave little space for bringing up such practical, day-to-day needs during a medical visit. Families may not know whether it's OK to talk about such challenges with their doctors. But your doctor is here to help with any challenges your family is facing, even if it isn't doesn't seem directly related to your child's medical care.

Emotions and mental health also matter

More than 40% of children with special healthcare needs have an emotional, developmental, or behavioral issue. These challenges can affect their ability to care for themselves and their families' ability to care for them.

For many children, their special need is a developmental delay, learning difference, or behavioral condition like attention-deficit/hyperactivity disorder (ADHD) or autism. These needs may not be as visible to others but are still life-changing.

Other family members may also experience a lot of stress. The family needs to be healthy to keep caring for a child; it's hard for a child to be healthy if the family is not.

Help is available

Support services are available, and it is important for all families of children with special healthcare needs to know where and how to access them. Examples include:

• Medicaid and the Supplemental Children's Insurance Program (SCHIP) provides free or affordable insurance for many children and youth. Each state receives additional federal funding (through Title V) to help pay for healthcare for additional supports and services based on a medical condition.

• Family-to-Family (F2F) Health Information Centers. It can also be helpful to talk with other parents and caregivers with experience in getting help for children with similar needs as yours. Look for a Family-to-Family (F2F) Health Information Center near you. These family-led centers are funded by the Health Resources and Services Administration (HRSA).

• Family Voices. Another helpful resource is Family Voices, a national family-led organization providing support to families with children and youth with special healthcare needs and disabilities.

Your pediatrician's office can help connect you with resources

You might have seen your child's pediatrician give out surveys asking about basic needs and emotional well-being; however, even if this might not be your experience, the door is open to talk with your doctor about these concerns.

Many clinics have social workers or other staff members who are knowledgeable about community resources. They can help link your child and family to the help you need, whether that's transportation, school services, extra income, the local food bank, or parenting support and mental health services. A growing number of clinics also have counselors on staff, who can help with emotional and behavioral concerns.

Your medical home

This is what we call the medical home: a team of professionals who know your child and family, identifies your child's healthcare conditions, and works with your family to come up with a plan and coordinate the care that your child and family needs. For clinics or practices that do not have these services available to families onsite, your doctor may be able to refer you to these services in your community.

In other words, you don't have to figure it all out on your own. Your child's doctor and medical home team are here to partner with you in helping your family and child. Pediatricians and the medical home team are here to help the whole child and family.

Remember

Don't hesitate to talk with your child's doctor about practical, social, and emotional concerns you may have, too. All of these affect your child's health.

More information

• Ask the Pediatrician: How should we feed our baby if we are running low on money?
• Childhood Adversity: Buffering Stress & Building Resilience
• Poverty and Child Health

The National Resource Center for Patient/Family-Centered Medical Home is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $4,100,000 with no funding from nongovernmental sources. The information or content are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.