Caregiving for children with disabilities

Kids can face many health challenges, some more severe than others. These tips can help both caregivers and their child with disabilities thrive.

More than an estimated 14 million kids in the United States — that’s about one in five — have some kind of special health care need. But even though this is common, helping a child with a disability get through the day can make a parent feel different and maybe alone.

Many parents in this situation rely on a good game plan and plenty of teamwork. If the caregiver journey involves a minor, consider these tips.

In this article:

Understand a child’s diagnosis

The period of getting to a diagnosis can be one of the most stressful parts of the caregiving journey. But once the health care team can pinpoint what’s wrong, that information can be used to provide better support.

Health care professionals are the first stop for reliable information. Many parents take things a step further by looking into published research or joining advocacy groups. Be sure to communicate any big changes in routine or treatment to professional providers. They can vet any information and help with any confusion.

Health care teams might also direct to condition-specific groups, such as those for attention deficit disorder or autism. If a child’s condition requires medication, a local pharmacist is a valuable resource to learn about benefits, interactions, side effects and what to do if a child misses a dose.

Build a supportive community

Being a caregiver for a child often involves dealing with financial strain, feelings of loneliness, mobility issues and stigma. But connecting with other caregivers who have a child with the same disability has been shown to be good for both parents and kids.

Not sure where to start? Every state has a federally funded program that offers information about support groups, and some school districts have special education advisory councils. Many communities also have local organizations, clubs, and arts or sports programs that provide valuable connection points.

Make the most of pharmacy and provider visits

Keeping a good relationship with health care providers can lead to better outcomes. Make the most of each visit by coming in with a plan. Prepare a list of concerns, questions or updates. If the caregiver feels like they’ll need more time, they can request a longer visit from the staff when they schedule.

At the visit, keeping note of what is discussed is critical. It can be tough to listen to a health care provider and care for a child at the same time, so they may want to bring another adult to help if possible. They can also ask the health care provider to send follow-up notes or ask permission to record the conversation on their phone so they can refer to it later.

If a child takes prescription medicine, it’s a good idea to spend time with their pharmacist as well. They can help give techniques for helping a child take the medication successfully and provide guidance on how to properly store medication in an emergency kit.

And don’t forget that a caregiver can add a child to their own pharmacy account for easier management of medication.

School considerations for kids with disabilities

A medical need shouldn’t keep a kid from getting the most out of school, which, in addition to education, strengthens social skills from being around other kids. Children with disabilities should receive a high-quality, inclusive education with individualized support and specialized environments when needed. Caregivers can work with educators to create an individualized education program (IEP) or a 504 education plan.

Health challenges and especially developmental issues can mean shifting expectations around what school is. Research shows that it may be best to focus on the bigger picture. Don’t worry too much about their specific milestones in math or English. Instead, focus on the fact that children with learning disabilities often experience long-term success when they can build skills like goal setting, perseverance, proactivity and self-awareness.

This content is for informational purposes only and is not medical advice. Consult your health care provider before taking any vitamins or supplements and prior to beginning or changing any health care practices.