Working with Schools and Health Systems
"It is frustrating to have to repeat information with multiple sets of providers in an organization."
Parents in the Building on Family Strengths Project told us that while they cared for their children with chronic conditions, they also had to find their way through and learn the "language" used in hospitals, health care clinics, and schools. Parents found good communication was really important in working within different systems and were frustrated when communication was inconsistent or broken down. Many wanted information and answers yet there seemed to be no one person or place to turn to for assistance.
Strategies
Parents told us that developing good working relationships with staff and professionals in schools and health care systems helped them find resources and ways to navigate the systems. Other strategies these parents suggested include:
- Build partnerships - develop an individual health plan for your child and share it, set expectations with teachers (how to communicate, discipline), share your philosophy with school staff and professionals, develop a relationship with the nurse, receptionist or other staff person who can help when you have questions, use resources available for you in the system (social workers, resource centers), seek and use an insurance case manager, get a care manager in the community by asking your provider or insurance case manager to refer you
- Be prepared - keep copies of medical records, have a written plan for school (food choices, medications, etc.), laminate schedules and reward charts, develop a plan for emotionally charged meetings and conversations
- Become an advocate - know your rights, learn the laws, bring an advocate to school meetings (health professional, therapist, etc.), be assertive, make firm requests, visit your child's or their sibling's school classes to educate about your situation, attend meetings and play a role in policy setting, join coalitions with other parents to make an impact, learn about Becoming a Family Advisor.
- Shift your perspective - keep your end goal in mind, tell yourself not to take it personally, set realistic expectations
- Be part of a community - find other families with similar experiences; network with other parents to get information about schools or health system resources
- Self care - take a breather, pick your battles, find someone to vent with
Reflect and act
It may help you to reflect and explore some of the challenges you experience when working with large systems. You can also use these questions to help think of some ideas and strategies you would like to try.