Depending on your child’s medical needs, they may see a pediatrician, a family doctor, and other specialists. All the physicians who treat your child are part of the care team. There will be some that you rely on heavily and others that you may only see as needed, but they all play some role on your child’s team. The doctors and specialists are generally long term.
Your child may have nurses, attendants, and/or aides who help them with day-to-day needs. Not every child will have home health providers on their teams, but if your child has home health, all the individuals that provide care for your child are also on their care team. Home health can be long or short term, depending on the individual’s needs.
If your child is under 3 years old, they may receive Early Intervention services (ECI). ECI services could include therapists, a social worker, a case manager, etc. All the ECI individuals that provide care for your child are part of their care team. After your child turns 3 years-old, or if they no longer receive ECI services, these individuals will no longer be care team members. You can think of ECI members as a short-term care team.
Some care team members come from your child’s school. If your child goes to school there will be their teacher, probably a classroom aide, and possibly school therapists (OT, PT, ST, VI, etc.). Depending on the program your child is in, there may be additional providers that help with designing your IEP, managing your child’s technology needs, etc.
If your child does not attend school and has home-bound services, there will be a team of teachers and therapists that come to your home to help with your child’s educational needs. If you chose to home school there may be just yourself, or other individuals that you bring in to help your child. Any of the people that come in to help are part of your child’s team.
You are a HUGE part of your child’s team. Any family and/or friends who are part of your child’s life may be part of the team as well.
Not everyone in your child’s life is on the care team. If there is a friend or family member that may spend a lot of time with your child, but does not participate in any of the care needs, they are not considered as part of the care team.
Regardless of how big or small your child’s care team may be, everyone on it plays a role in your child’s health and progress. You are your child’s best advocate and it is up to you to make sure that everyone on the team is the best person for your child.
There may be some roles that get switched out often and some that may stay on the team for the long haul. Bottom line—you and your child’s primary provider lead your team, keep them focused and working together.
The Diagnosis and Healthcare section has more information including useful tools to help you keep care team information organized.
With every new diagnosis and symptom, there is often additional equipment. What do you do with it all? Here are a few ways one mom has found to hide a few things and keep her home looking like a home.
Some tips for traveling by car with a child that uses a wheelchair for mobility.
Making a decision that goes against your doctor’s advice is tough to do but sometimes we must make those decisions. Learn about one family’s decision-making process when in this position.