Advocating for Your Child


The task of finding information and deciding how best to advocate for your chronically ill child can be overwhelming. Parents or caregivers must work with medical professionals, teachers, school nurses, and social service agencies. Advocacy is not only necessary to obtain the best care and services for your child; it can also be an effective coping strategy for living with chronic sorrow.

Parents or caregivers who have a strategy for working with medical professionals and others can feel empowered to balance the needs of your chronically ill child as well as other family members. Empowerment can be confidence building for families and encourages a greater sense of control over a sometimes chaotic situation. Remember that caregiving and advocating for your child is not a “sprint,” but a “marathon.” So, it is important to strengthen your coping skills and strategies along the way.

As you collect information about your child’s condition, you may want to organize it in a binder. That way all the information is in one place when you need to refresh your memory.  You can also use the information to explain your child’s needs, rights or services when necessary.

Visit each page listed below for information about advocating with professionals and agencies for your chronically ill child:

Advocating for Your Child at School

Advocating for Your Child with Medical Staff

Working with Social Service Agencies