When you become a parent or caregiver of a child or youth with disabilities or medical conditions, there is a lot to learn. Your child will need ongoing care from a pediatrician. They'll also see specialists and possibly need therapies and education support.
It can be hard to think about how or if your child's
condition will affect their daily life. You may not know if your child's health problem will be gone soon or if it will be
chronic.
Here's what you can do now to get organized at home, so you can have more
quality time with your child.
1. Learn about your role as a care coordinator.
If a child has a disability or medical condition, they often have multiple
health care providers. There are a lot of services needed to keep your child healthy.
At home, you will oversee your child's medical,
nutritional and other needs. You'll also manage their appointments,
insurance records, medications, medical equipment and other supports. The name for this role is "care coordinator."
Some
insurance companies or medical offices may have someone with the title of care coordinator. However, this important service may not be available in many pediatrician offices.
Your care coordination responsibilities may include:
Working with the pediatrician and other care team members to create a care plan for your child
Tracking your child's progress, such as their
milestones and
physical development
Updating your child's care plan and letting the care team know when there are changes
Parent tip
Parents are often in the best position to help coordinate their child's care. When a parent is actively engaged in their child's care, it is good for their child's overall health. 2. Organize medical records and notes.
With a new diagnosis, your family may be thinking about your child's immediate needs. However, now is the time to start keeping track of your child's medical records and notes that may be helpful in the future.
Choose a method that you prefer, such as a notebook, computer or phone.
Take notes each time you talk with someone about your child's medical condition. Include the date, time, and name of the person you spoke with.
Keep records on your child's appointments. Note the main reason for the visit.
At the end of each conversation or appointment, read your notes or summary back to the other person. Make a note of the next steps or actions and decide who will be responsible for following up.
Use an online patient portal (for example: MyChart or MyCare) to keep track of your child's medical records and notes. Parents can request access to their child's patient portal, share documents and transfer records from system to system. The patient portal can also be used for communicating with your child's care team.
Parent tip
Right after your child's diagnosis, you may not expect the situation to last for days, weeks, months or even years. Having notes about the next steps helps you keep track of information and follow up on your child's medical care. 3. Make space for medical supplies and medications.
The medical supplies that you brought home may only be temporary, or your child may need them over a longer period. Set up a designated space, and have a plan for storing equipment and medications.
Here are some things to consider:
Keep equipment and medications in a temperature-controlled space. Check labels for storage instructions and keep them
out of reach of children.
If others will be providing
home health care, make space for it and have a way to keep track each time care is provided.
To keep your child's lungs healthy and medical devices working well, look for ways to keep the air clean in your home. Let others know that your home is free from
nicotine, vaping, candles, air fresheners and diffusers.
Parent tip
Keep notes about your child's home medical supplies and durable medical equipment, including company and insurance information.
4. Connect with your child's care team.
Your child's care team works with your family on a shared plan that supports your child's
care requirements. They help navigate through procedures, diagnoses and tests. And they listen to you, answer your questions and follow what is best for your child and family.
The people on the team will vary depending on your child's disability or medical condition. Your child's team might include:
Parent tip
Understanding
health insurance plans and
medical bills can be challenging for any family. To avoid paying unneeded costs, learn about your family's eligibility for
Medicaid, Medicare and/or Supplemental Security Income for
Children through Social Security (see
eligibility requirements). Need help? Ask your pediatrician to connect you with support and resources in your
state.
5. Connect with other families.
Having support from other families and peers can really help when you're trying to figure things out. But not every support group will feel like the right fit, and that's okay. It can take time to find one that works for you, whether it's a general disability group or one focused on a specific condition. If one group doesn't feel right, don't worry. There are plenty of others out there.
Some places to find support include:
Parent tip
Keep in mind that some groups might share triggering content or incorrect information, so it's good to be careful.
Remember
It's easy to get very focused on being your child's care coordinator. However, simply spending quality time playing and bonding with your child is just as important. Your child needs that connection and playtime with you to support their development.
In addition to taking care of your child's medical needs, it is important to take care of yourself. Make sure that you, your partner and other family members check in with one another, too. Allow yourselves to take breaks, exercise and talk with friends. Doing things you enjoy helps manage
stress as you adapt to a new routine.
More information
This article was developed with insight and contributions from the American Academy of Pediatrics (AAP) Family/Caregiver Workgroup—a dedicated group of parents and caregivers of children with special health care needs. These individuals generously shared their lived experiences to help shape meaningful, accessible, and family-centered educational resources. As part of this workgroup, members advised on content, reviewed materials, took part in planning discussions, and supported the sharing of resources. Their collaboration with the American Academy of Pediatrics and subject matter experts ensured that the information provided reflects both evidence-based guidance and real-world needs of families. The AAP is grateful for their time, partnership and commitment to improving health outcomes for children and supporting those who care for them.